Sundowner’s Syndrome
Sundowner’s Syndrome is the name given to an ailment that causes symptoms of confusion after “sundown.” These symptoms appear in people who suffer from Alzheimer’s Disease or other forms of dementia. Not all patients who suffer from dementia or Alzheimer’s exhibit Sundowner’s symptoms, however. Conversely, some people exhibit symptoms of dementia all day which grow worse in the late afternoon and evening, while others may exhibit no symptoms at all until the sun goes down.
Sundowner’s Syndrome largely remains a mystery to medical science, although there are several theories about why these symptoms begin at night. More and more studies are being conducted to try to determine the exact cause.
In the meantime, some doctors believe it’s an accumulation of all of the sensory stimulation from the day which begins to overwhelm and cause stress. Some speculate that Sundowner’s Syndrome is caused by hormonal imbalances that occur at night. Still others believe that the onset of symptoms at night is due to simple fatigue, while some believe it has to do with the anxiety caused by the inability to see as well in the dark.
The theory that the symptoms have something to do with darkness has been supported by studies where the symptoms subside within an hour of the return of daylight. There is some evidence that nursing facility patients show an increase in Sundowner’s symptoms during winter, which may suggest a correlation with Seasonal Affective Disorder (SAD). SAD is believed to cause depression in the winter due to the shorter periods of sunlight, and it affects people of all ages.
Alzheimer’s Disease and Dementia
There are actually at least 70 different conditions that cause similar symptoms of confusion and loss of mental capacity, usually in the elderly. Alzheimer’s Disease is only one form of dementia. All types of dementia generally begin as a subtle loss of memory, which may barely be noticeable since everyone struggles somewhat with memory. However, when the symptoms worsen gradually over time, dementia is usually the culprit. While it’s normal to forget where you put your house keys, for example, it isn’t normal to forget your street address, at least not for more than a few seconds.
Dementia can affect a person’s ability to logically judge circumstances, which means they’re no longer able to safely care for themselves. Studies have shown that people diagnosed with Alzheimer’s Disease generally live from one to 20 years after diagnosis, with the average person living just eight years with the disease. It is one of the leading causes of death among the elderly. It’s estimated that as many as four million Americans have Alzheimer’s Disease, and this doesn’t include the other forms of dementia.
Just as the causes of Sundowner’s Syndrome are largely a mystery, the same is true for Alzheimer’s and dementia. The symptoms are believed to be a result of neurons in the brain that stop working, and autopsies on people with Alzheimer’s show abnormal brain cells. Some forms of dementia are believed to be genetic, while others appear to have no genetic link whatsoever.
Strokes, Parkinson’s Disease, and Huntington’s Disease put a person more at risk for dementia. In advanced forms of Parkinson’s Disease, dementia is almost inevitable and is called “Parkinson’s-related dementia.”
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I am extremely curious and scared of what I am finding on Sundown Syndrome! I am a 33 year old male, I was first diagnosed with having Sundown Syndrome as a child. I have since been diagnosed a total of three times and am worried as to what this means. It was never insinuated that it was serious, as I have gotten older and the last couple years have been the hardest. I find myself with most of the symptoms that are listed and thats where it started, the way it was explained to myself when I could understand was its a emotional roller coaster that a person in a bad relationship breakup goes through. Doesn’t seem so bad! but if it was only that simple… My main concern has become the lack of sleep, I am awake till wee hours watching over everyone in the house. Of course this does cause conflict with others because I am awake and moving through the house. My symptoms flair up as soon as the house is dark, I am afraid of the dark, and wander through the house with a flashlight, which causes shadows and makes fears worse, I use a flashlight till I get downstairs where I will turn on every light there is. I have fears of what is in the dark, not from scary movies ect, although I cannot watch them it does make it worse….lol I fear the dark extremely, I will never turn my back to the dark in the house… I can however walk around outside, down the street and find comfort in the quiet, but watching a movie tv or even playing on the computer I need light. Now that I have moved recently to the east coast and the days are shorter I noticed that I have gotten worse, days are shorter and dreary. I am in a relationship and find it hard to voice what I am going through, not even sure how to explain how a 33 year old is going through a disorder such as this??? I am frustrated because I hear about my being up late and then wanting to sleep when its light out. Its not a night owl thing its out of fear and agitation I have bad nightmares and just even bad dreams… If anyone has anything that can help me understand this a little better I would extremely appreciate it, so will the house mates!! I do want to state that I am not the kind of person that wants medication to deal with it I think there has to be something that explains it and something that can be done.
I don’t know if this will help you or if anyone has suggested it yet. One of the artifical lights for Seasonal Disorders. It would give you the extra daylight hours, more than regular light bulbs.
We used christmas lights around the ceiling for lighting when my grandson is going through night terrors.
They gave off enough light to dispell the darkness but not keep outhers awake
Hi,
I read your story and my heart goes out to you. I was going to suggest the same thing someone else did and that is providing the lights for seasonal affectiveness disorder or SAD. Light can affect you in such a huge way. I would also make sure you are getting your vitamins and make sure you’re hormones are in check. You can bounce yourself out of whack big time and those simple things can make a huge difference. Good luck to you! Susan
hi there,
i read your problem and i relate to that. i am having similar symptoms. though its not of fear but of rage and outburst n hopelessness. during the day i am normal but as soon as dusk its like everything just overwhelms me. m a med student so have been researching. first of all find out the cause. usually there is a trigger in the past.. mine was a huge academic failure followed by a break up in a very serious relationship.. find it out n make peace with it. secondly at dusk go for calming n satisfying activities.. it could be something from a prayer to the Lord to something like sex. anything that makes u have a peaceful mind or a satisfying experience. it has helped me.. hopefully it will to u too.. cheers mate.
I just wanted to say how encouraging it is to see people helping people. My mother in law has alzheimers dementia and it is very hard not to be able to shop talk with her anymore. I lost my husband (her son) 18 years ago (at a very young age) and we were able to remember him together. Now when I visit with her she asks my name over and over again, then states something conversational and then back to asking who I am. I ask her about my husband (her son) but she does not seem to change demeanor or remember him or sometimes will stop talking (did she remember something?) I love her and want to reach her but I can’t. I know the very most important thing with her is not to be angry at her for anything she has done…she did not deserve or in any way cause this condition. I know some with dementia will act out and get beligerent or angry (I have seen this with some of my patients), but again it is not an afront on anyone who cares for them.
Dementia causes a myriad of symptoms and behaviors, just knowing that can help you stay focused on their care. A doctor can help control some of the more agressive behavior with medication, but support (groups too), guidance and a gentle spirit will go a long way. For those with fleeting symptoms as yourself with sundowners symptoms you should seriously think about some of the new medications that actually do help people with early memory loss or extreme behaviors. I don’t like to promote medications, because there are so many ways in which we can be therapeutic without them; ie presence, patient guidance, touch, animals, stuffed toys or baby dolls, therapeutic talk (especially about the past), looking at pictures to stimulate memory, music…especially nano or ipod (with headphones) music for their generation (I have seen this work very well, with stimulating the love for dance and singing), etc. Light boxes (concentrated in one box with time exposed to whole body light) for SAD (seasonal affective disorder), medications and therapy for depression, hormone tests for imbalances and even lab work for thyroid or pituitary problems can be identified. The medical realm is the first place I would go to get myself some help. I wish you the best, but don’t lock yourself in the house without getting some sort of help and somebody you can talk to about this problem. Being afraid in the dark by yourself is no way to live. You need hope and healing and health recommendations!
Can you try putting on as many lights in the house as you need, besides lights in bedrooms of those sleeping? You may want to lay in a bedroom or on a couch with a lot of light and fall asleep that way. I know that I did that for a long time when I was having panic attacks.
my grandmother is 95 and when ever she has to go into the hospital she always gets sundowners syndrom. it really puzzles me because she does not get it at home.why is this
DID YOU GET ANY REPLIES BECAUSE IS LIKE THAT ALSO. I LIKE TO KNOW IF YOU GOT ANY ADVICE
Hi Cathy, I've just introduced the ability to reply here on the site. So let's see how it goes. I hope replies do start coming in. People have so many experiences to share…
The reason elderly are affected when they go to the hospital is due to the fact that they are out of their comfort zone, nothing is familiar to them, causes anxiety and confusion, the older they are the worse the effects, my mother is 96 and recently fell and broke her hip, the trauma to her mind and body from the fall, plus surgery, pain meds, strange environment, she is a ball of confusion, she has dementia, and now it’s full boar at this point, we just transferred her back to skilled care where she resides normally in assisted living, she’s a little more oriented here and there, but wonder if she will ever fully be herself again, but she started with the sundowners during her stay at the hospital, nothing you can do to calm her, or reason with her, she’s in another world and nothing we say to her registers, takes alot of patience.
I am the daughter of a sundowner. I am interested in finding out if the person with the disease is physically violent, toward themselves or others.I understand that they are not aware of the pain but do they have fits of rage? If I could get an answer or some feedback that would be appreciated.
My father was doing wonderful until we put him in the hospital in December. We had no idea what so ever that he had any problems! I had to stay around the clock with him and it was almost more than I could do! The second night in the hospital it started and I had no idea what was happening to my father-he was find before the hospital. He reverted to his teen age years and asked me to fix the plow and I did not know that he was talking about but he was talking about the footboard of the bed. Some medications to calm them down do not work and sometimes it works just the opposite. At the end of the stay the following had happened: he was kicking at the nurses trying to get out of bed, nurses had to sit beside him to keep him in bed, he punched me in the stomach(my father had never touched me prior to this), he ripped all the monitors off him, and pulled his IV out, and eventually had to be put in restraits. We had no idea about this disease. He had to be hospitalized again and January and I don’t want to go there. After we brought him home in December the Sundowner’s disappeared. But since bringing him home in January things haven’t been as good. The public needs to be made aware of this disease! Nurses and Doctors know about it but too many families face this when a elderly loved one is hospitalized. My heart goes out to everyione who has a loved one suffereing!
I am also the Daughter and the Caregiver of a Sundowner and Lewy Body Dementia patient. My Dad’s Dr’s. and I have been working to control this disease. Yes, I have seen the violence and the sweet kind hearted person that this horrible disease has completely taken control of. My dad will turn 80 in May and is not in the best health. My dad lives with me and my husband, and it is so very hard to handle at times, but, is definitely worth it to me. I am able to say, that I have been blessed to spend the time with my dad thru thick and thin. The anxiety and sleeping pills help a little. I pray that one day this disease is completely wiped out. It is really sad to watch it. My prayers are with each and every one of you.
Bettye, i know ext what you are going through. My dad has had sundowners for years but it only manifest itself when he was in the hosp or sick and his amune sysytem was comprimised something as small a cold could bring on symtems. The worse sick he was the worse the symtoms.
Dad moved in with me and my husband a year ago the 29th of this month after losing his little lady friend he had been living with for 6 yrs and doing really good. The stress from losing her really made him bad. With in a few days he didn’t know I was his daughter, that had never happened before. Dad was dianosed with demitia not alzhiemers but he had 2 siblings with it so I am sure his will develope into it.
He thinks I have the same name as his daughter but we are different people.
After he got used to living here things started getting better. And there have been no major outbreaks of the sundowner just the dementia. Doc put him on the med for memeory that they give Alz patients to slow down the progression of the dementia. It seemed to be working.
Then on the 18 of this month he took a bad fall and broke his shoulder, cheekbone and had a concussion and 6 stitches.. he was treated at ER and sent home. Everything was same as always till the 21st. He woke up around 2a.m. didn’t know where he was and it went down hill from there. worse he has ever been. By the end of the day I was ready to pull my hair out. He had excessive energy and wanted to get up and pack to go home. He wanted to wash his hands over and over trying to wash the bruises off. I couldn’t keep him in bed or the wheelchair. I got no sleep for 48 hrs sitting with him. If i tried to go to the bath room he would get up. I have no one that can help but I am determined to keep him home with me. My husband is great putting up with it.
I promised my mother who died in 03 at 65 from diabetes(I took care of her for 7 yrs) she was blind and in heart failure that I would take care of him and i will till he passes.
Finally last night around 8 he fell asleep and slept like a baby all night.this morning hegot up and was back to his self happy and calm. It has been a very nice peaceful day and we have watched old western. he would prefer to watch military channel but i have to draw the line somewhere;) He also lives in the past, reliving his mil days. Thats all he want to talk about. Well I’ll shut up now but it has been nice to vent to others that understand.
Dana, wow….where do I start. I will start by saying, “Your an Angel, and your husband is a Saint”. I know at times we can only handle so much……because we are only human….Girl, I know you are tired. Last night was my first time back at Church in almost 3 months, and I felt guilty about leaving the house. I had to hire a Caregiver to come in and help me. Starting tonight, I will sleep in the same room with my dad, in a chair in the corner. Things are declining very fast here. All my prayers are with you and your loved ones. God Bless.
Dana,
I too am determined that I will take care of my father who has alzhiemers.
I have a wonderful father who worked three jobs to take care of his family of nine children. He has never turned his back on me and I will take care of him until he is gone, I understand everything you are going thru. My Dad is at the point where he has regressed back to his childhood memories and the things he went thru as a child. He has recently started having the sundowners and it just breaks my heart to watch him go thru this. I have tried many things to make him feel better but even with meds he still has this happen. I think the hardest part of this is watching my Mother lose the man that dedicated his life to her they have been married 57 years and my Dad has always been her rock. This disease is the most cruel I have ever
seen. My dad takes meds to slow down the progression but I sometimes wonder if it is the right thing to do we are just prolonging his misery and eventually the disease will win. I do not know how I would get thru this without God because I do not have the strength to do it alone. I will pray for you and your family and I applaud you for stepping up and taking care of him. God Bless You and your family
Amen, Bless you & your family my Mom has Dementia and I’ve been through it all alone. It’s like losing her twice. I pray for God to be kind every day of my life. It’s a SAD desease.and it just gets worst there is no better…;( I love her so, she’s going to be 87 in August. It’s all in God’s hands.
Carolyn, I pray for God’s will. I know it has taken it’s toll on me and my family. In the same respect, Wow, what it has shown to my kids. I admire you for taking this on alone. God definitely has an Angel in you. I pray he gives you strength and peace.
It’s heart breaking…..and what’s so sad about this desease is it takes such a hard hit to the love ones. Because this is real , and it totally takes her away from me and Its so hard to see her go further and further away from me. She’s my Mom I love her so much.
Thank you Bettye for caring that means alot. The families going through this needs all the support they get. Bless you its so appreciated,
From my Heart, Carolyn
Carolyn ,
I totally understand what you are going thru because I’m going thru it in much the same way.My mom turned 80 in March and has Vascular Dementia with a slight case of Sundowners and other health issues ,it is a very sad thing and I often wonder if she undrstands what is happening to her . She is more settled during the day and somewhat confused at night and Dana my Mom has the same Sleep Problems she sleeps in a Recliner (because she has a severe Breathing Problem)and is on Oxygen 24 hrs a day ,I sleep on the Couch beside her chair and when she wakes up at night (usually 3 to 4 times a night) but there are Rare times that we get to sleep thru the night , if she sleeps thru the night she usually is a little better the next day..
TO everyone here Thank U so Much for leaving your thoughts here I just found this site tonight and it is a comfort to read your letters .
My dad will be 91. He lives alone nearly 85 miles from me and I am only child. neighbors look out for him and we pay for someone to check and give him his medication for his heart problems twice each day. He gets meals on wheels as well. Once he is up in the AM until he goes to bed, he is fine with the exception of what they call “pleasant confusion.” For the past 6 weeks, he has started calling neighbors and me every morning anytime from 3 AM to 8 AM – complaining of chest pains, stomach pains and other mystery ailments. We admitted him to the hospital one morning due to the complaint being fairlly severe. He was there 4 days, in a rehab center for some PT/OT for a few days and it was our hope he might like the assisted living setting. No way – got belligerent and insisted on going home so we decided to try. Now the phone calls have continued and he cannot seem to describe any specific ailment. We though maybe acid reflux and he is now taking nexium – no change. In the hospital and nursing center he was taking a sleeping aid – restoril and ativan prior to bed. He cannot take those at home. He does suffer from a form of dementia but during the day, is doing fine – it is the early, early morning that is the problem and we do not know if the pains he describes are real or not. Cardiologist has not been much help (and I do not criticize anyone). I fear his neighbors will lose their compassion for him due to calls and it is elevating my blood pressure, cocnerning my husband and stressing our household. I want to do the right thing but not sure what that is – just for the record, he takes Coreg, Plavix, mulit-vitamin, lisinopril, imdur, nexium and baby aspirin. Blood pressure was normal at doc on Friday. The chief pain complaint in the early hours is chest coming from pit of his stomach – it changes. Nexium has not helped. Sorry so long but am very concerned and desperate for a good night’s sleep and a pain free dad! Someone suggested gall bladder. Are there any other only children with difficult, often belligerent 91 year olds dads with dementia out there?
You may want to double check with someone like a pharmacist, but my husband was told by an gastrointestinal doctor, not to take nexium and aspirin together. It might be that some of his medicines are interfering with each other.
Also, wanted to tell you that my very swet mother was given ativan in the hospital at age 84, and it made her a “wild woman” wanting to get out of bed, talking about those nurses being mean to her, etc. I asked the nurse why she gave my mom the medicine and she said they give it to the elderly lots of times so they can get to sleep. I said it is doing the opposite of helping her sleep. That’s when the nurse told me that this medicine sometimes in the elderly does the opposite of what it is supposed to do. I asked them not to give it to mother anymore. The next night they did not give it to her and my mom slept fine. However, the third night there was another nurse and I found out at 3 AM that mother was again wide awake and very restless. I asked why she gave mother the ativan since I had requested it not to be given to her. The nurse said she had another very sick patient that might not “make it” that night and she gave my mother the ativan in hopes to make her sleep so she could devote her time to the other very sick dying patient. I think its horrible that nurses given anti anxiety or sedative medications to patients, just so it can make their nights easier. Of course, it worked the opposite in my mother and made her NOT get the sleep and rest she needed.
Cathy,
I have spoken to alot of doctors and they tell me that alot of Alzheimer patients are given these drugs to try to keep them “quiet” and as we have found out in most cases this doesn’t work. Keep on top of your mom’s treatment and good luck. Xanax works good for my Dad and it seems to tire him out so he can get some sleep…
Tom
Cathy, I know exactly what you are talking about. The assisted living/hospital are very short staffed and it seems to me that they (nurses) are there for a paycheck. The ativan works for my dad, but, I have to make sure it is given exactly 5 1/2 hrs apart for aggravation. I give my dad tamazapam 1 1/2 to 2hrs after his evening dose of ativan. Of coarse, we will have to fine tune it as time goes on.
Tom, you are so correct, drugs work differently on everybody.
Me being so concerned about getting addicted to the ativan, yesterday I tried 1/2 mg, and my dad takes 1mg every 6 hrs. I took my dad to get a pedi-cure and he became very violent. I survived the attack, and rushed back home. If addiction is all we have to worry about, that would be great.
May God’s power strengthen us all.
Bettye.
My dad has this exact same issue. In the evenings he complains of stomach aches and chest pain, he goes to ER sometimes 4 times a day forgetting that he had already went. We moved him to assisted living and he is good with it and feels safe now. Thank GOD for that, he actually likes it there. But they still can not say no to a request to go to ER because the one time they do not take him could be the time he needs real help. The visits are cutting down but are still many. They are suggesting we get him on anti anxiety drugs and say they have a specific drug to take that edge off in the evening…..or morning in your case. They also say that the pain in the stomach and chest is more than likely anxiety building up. if you think of something that scares you or a near miss when you are driving……that feeling in the pit of your stomach, then it moves to your chest………this is what they are feeling, extreme anxiety that only builds and builds the more they think about it. Then they get frightened and it builds even more. Its sad, but I feel medication is the only way to help sometimes. I know its not a great answer but when life is so unhappy and this gets worse, what do we have to lose? I am trying to get my dad on meds now…….so far his doctor is completely non responsive. I am moving up the chain of command today.
Good Luck with the Dr.’s.. My dad’s is fine today, of coarse I have given him his ativan….Not gonna try to cut back on that. Learned my lesson.
Keep us posted Lisa McB
Bettye.
I can relate to your story somewhat due to recent care of my mother with similar complaints which was thought to be gall bladder but discovered a large bleeding ulcer due to prolonged use of baby aspirin and possible over medicating due to forgetfulness. The home health nurse said that aspirin and ibuprophen is not good for elderly as it causes stomach bleeding most commonly. My mother’s Dr. removed her from her aspirin regiment and ordered an upper and lower GI which determined her ulcer. She is now on omeprazole ( prescrip. strength ) for 6 mo to heal the ulcer and doing much better. Takes upon awakening one hr. before eating and it has solved a big mystery. While my mother is only 83 she has dementia and it is a challenge
At 91 it could be anything. We now have a full time caregiver with my dad nights because they got so bad. Adjust your thinking such that you may not get him back to the independence he had when he was 89 but that now you need to secure options for him in his present state. Good luck.
Avery, I will ck with the Dr.’s about that sleeping pill thing you talked about. Just had to hire a Caregiver, It is going to hill quick. He was put on another pill for the anger. Now, just seems like he is drugged up. I am still pray for my daddy back. God Bless.
Bettye, we gave my Dad over the counter sleeping pills and they worked sometimes but he seemed very tired the next morning. I have stayed away from the psychotic drugs because Dad got really weirded out and never slept at night and was very combative too…
Xanax has worked well for him (2.5 mg) of course you want to check with the Dr first but we only give him one pill before bedtime and this has seemed to help quiet him down, take care…
Tom
Good Afternoon Tom, I will keep the Xanax in mind for when the Dr. calls back. Well, needless to say, I’ve had to hire a Caregiver for my dad, just to help me. My dad was put on wellbutrin for the aggression. Well, now he has stopped eating and will not take his pills. So, it looks like I am back at square 1. I have a call in to his Dr. for a change. My dad is going to give himself a heart attack…and it starts happening earlier and earlier. Had a Social/Case worker come to my house and told me “put him in a home”! This lady was unbelievable. Wow, and in the same breath told me “anywhere you put him, you have to watch them (the nurses)” Please, is what I thought to myself…… And then, tried to make me scarred of her…..Again, Please. Will let you know on what the outcome of this portion of the of this problem is. Always, God Bless.
Betty, Xanax will help quiet your Day down and it will make him easier to handle. I would suggest staying away from SRI’s such as Zoloft, these pills made my Dad very agressive. The pills can be placed into his drinks if needed and be sure to give him B vitamin and also Ensure if he’s not eating alot of food. You’re doing good by taking care of him at him just don’t forget to take care of yourself too since you are his main caregiver…
Blessings…
Tom
My mom has the same problems. Last friday I took her to the doctor because her sugar was high and her stomach was still hurting her. Been having stomach problems for over a year. She had a fever so they put her on antibiotics and said she had a sinus infection. By Saturday night she was very weak. Called 911 and they took her to the hospital. Ran test all night and she had a infected gallbladder. Lucky to have not busted. Surgery on Monday after a round of IV antibiotics and coming home today. Have that checked out if he has stomach problems. Was a ruff time with the dementia after the surgery. Hoping that since the infection is gone the head will clear up some also. She didn’t want to eat or sleep at night because she was having stomach issues. Good luck.
My father is 88. he is a disabled vet from ww2. My mother took care of him..she passed away over 2 years ago. He is living in an assisted situation. I have been going to see him for 3 or 4 hours every day since she passed. He has always taken alot of meds…I noticed that one of the ones you mentioned the lisinopril is also one he takes. he takes anti seizure meds also and blood pressure and also prosac..lots of calcium and some meds to settle his stomach. Lately at night he has been taking off his clothes, basically ripping his pajama tops off and laying in bed totally naked. He says he sees Patsy cline in the closet ( he doesn’t even really know who she is) and now he seems really disoriented.( he does not have alzheimers) I am wondering about this sundowners thing. I wish i could be as kind as you in referring to the medical profession but alas, I cannot. My father has never lived alone and i know he is lonely but this thing has come about so quickly. I am about to visit quincy veterans home tomorrow , he is now on the list. I understand about the homelife…this letter is just to let you know that you are not alone. Joan
Before my mother fell in December, she was fairly rational. At times she would have some memory loss but she’s 94 and it was never a real problem. She is now in re-hab and showing significant dementia. The nurses claim it is “Sundowne’s Syndrome” and they seem to be comfortable leaving it at that. She is taking Coreg and one of its side effects (stated on the manufactures’ web site) is demenita. I’m not saying this is the cause of her Sundower’s Syndrome but it could be an underlying factor. I have mentioned this to the nurses at the reb-hab center she is in but no one seems to make the connection. She is afraid of having to go to the toliet at night so she doesn’t drink water at night and I have read dehydration is also suspected as a factor. In her case, the part What is really hard to understand is she is fine at 5 pm and within two hours she can be totally irrational. This is causing my blood pressure to rise to at times dangerous levels. It’s like some insane roller-coaster I can’t get off. Any one have any ideas?
john i read your story it sounds just like my grandmother when she was in the hospital i hated to see 500 come thats when the stuff would hit the fan and like you know one seemed to worry about it. she would cry one minute and be mean the next. i even ask them to give her a low dose xanax they said no. it worried me when i had to leave because i was always afraid they would be mean to her.
john feel free to email me cat726@mchsi.com
My father has dementia and was not actually diagnosed with sundowners but was getting very violent at night and walking around all night. A psychiatric nurse suggested it could be the Ambien the doctor prescribed for him. We took him off it and in 3 days he was his normal sweet man. Now I don’t know if it was the combination of drugs with the ambien, as he was also on Risperidone, Hydralazine, Metoprolol and Mirtazapine (Remeron). Which we are in the process of trying to wean him off some of these with the help of the psych nurse. All these doctors just dope these people up. It’s terrible.
I posted several days ago about my father. He has never taken any medication for dementia. His primary care physician has recommended we try a combination of namenda and aricept. Do any of you have experience with these meds for older loved ones? He has never been diagnosed with Althziemers specifically – only mild to moderate dementia. Thanks for the responses to the original post – much appreciated. I sure feel all alone in this sometimes but obviously have much company. Blessings to all of you.
Deb: I have no experience with those drugs and if they work, let me know. I am going to try a different approach. I’m going to try a night light. I doubt it will help but there is evidence that people who have a lack of light such as in Alaska do have some mental problems. It worth a try. Anyone else tried this?
John, There are lights that actually replicate outdoor light – sometimes used in classrooms, offices, etc. We referred to them as “happy lights.” We put them in a classroom for students with behavior issues and it seemed to help. Might want to Google. My BP has been affected as well – constant worry I guess and wanting to do the right thing.
I was talking to a friend who is a doctor about this. He offered a few insights but was quick to admit that the medical community is in essence baffled by this condition. He did share one thought that I’d like to share with you. “The person who is most effected by Sundowner’s syndrome is the caregiver and they must be careful of their health as well.” Easier said than done but something to think about.
Joan, My dad is a WWII vet as well. 82nd Airborne and he is very proud. You mentioned a Veteran’s Home. Is that like assisted living for vets or a hospital setting? I am unfamiliar with one. He loves to talk army to anyone who is willing to listen. I think loneliness has much to do with the dementia and the sundowners.
dose this sight have a chat room or a support group would love to join sometimes care givers need others to help
Hi,Everybody my dad is a wwII vet also I think he is your folks lost kin.He’s 92 and had dementia for some time.He fell and shattered both bones in his leg. he had to have the bones reconstructed.It took an act of God to keep him in the hospital for the last five days!Everything Deb says above is the same with him.We just transfered him to a nursing home to be watched and for rehab. Wow has he been hard to handle.We can’t keep him off his feet because he does not believe he broke it or that he had surgery.My brother is his M.D.and he wont even listen to him.He tried to take his cast off today. He snuck past the nurses and almost made it out the door before he was noticed.I think it is just plain fear and anxiety that causes the behavior.But what do you do he is in perfect health.If we take him home he will fall for sure.We have guardianship now but he doesnt know that. Sorry your all going thru the same thing. BRIAN.
I am a 27 yr old combat vet. I have had a history of problems through out my life as well as it running in the family. Family history includes A.D.H.D., suicidal thoughts and attemps as well as a few successes, Depression, bi-polarism, manic depression just to name a few. I was in a helicopter crash on my last deployment which rounds out my head injuries over my lifetime into the teens. My wife and mother-in-law have an uncle/brother respectively who is a Vietnam vet that was diagnosed with Sundowners syndrome. I am currently on more medications for pain and inflamaition/seizures than you can shake a stick at. The army currently has me on 27 pills daily. My wife and mother-in-law have noticed many of the symptoms i have match to the tee that he has. Im afraid of being thrown out of the military as this is all I have and with my injuries I would never be able to support my wife and son if that happened. I tried going to college but with my brain injuries I cant even concentrate for more than 10 minutes and trying to retain the information is damn near impossible. I also don’t dream at night but suffer from severe flash backs and have also been diagnosed with severe P.T.S.D. from things that i was part of/witnessed over my deployments.Sleep is very far and few between to the point where my longest stint was 10 days without a single wink of sleep. Any help or information I could get would be greatly appreciated. contact me at blkhwkce69@yahoo.com or justin.j.stanton@us.army.mil or my wife who would also like to speak with someone who has any info on this subject at jennygnkb@yahoo.com
100% disability medical retirement. I have a friend who is experiencing something very similar to what you have described.
Cathy, Great idea! I stumbled across the site so have no clue.
I just found this forum this evening after “Sundowner Syndrome” struck me as something my husband (age 58) might be suffering from in the evenings. The topic of his change in behavior after dinner came up during a visit with his visual/occupational therapist. I had discussed this syndrome with friends with elderly parents but it never occurred to me that this was happening with my husband. I was too close to the situation?????
I noticed Deb’s entry from earlier this month asking about meds for her father and thought I could relay some things we have seen with my husband. My husband has been diagnosed with PCA (posterior cortical atrophy) which is a form of dementia effecting the back part of his brain, the parts that control his visual spactial abilities. He was started on Namenda and Exelon (similar to Aricept – I believe) in June or July or last year. We have seen a marked improvement. I believe these meds have improved his quality of life and slowed his decline. I would encourage you to seek out more information on these meds and how they can help your father. I would also encourage you to keep pushing forward to work with the very best doctors you can find. The philosophy we live by in our home is that once you give up hope there is nothing left. We continue to use prayer, holistic meds, conventional medication, therapy, and the very best specialists we can find. We enjoy the great days, the good days and the tough days with the hope a cure will be found for these diseases we could all face as we continue to age. You and your father are in my prayers.
I was very interested in Carla’s comments because my husband, age 56, has been exhibiting the same sort of behavior, beginning around 10:30 P.M. every evening. He is on methadone and zanax for pain conditions, and has been under increasing stress lately as he has been having trouble with his doctors. The Sundowners behavior reminds me of what my 84 year old father exhibited when hospitalized, and I wonder if anyone else has seen this kind of thing in chronic pain patients being treated with these drugs? He becomes quite irrational, very verbally abusive, and threatens physical violence. Also disoriented and forgetful. A lot of “blaming” and name calling. Then it seems to lift around 1:00 a.m. but we are both getting terribly worn out! Any comments would be welcome.
Pat:
A doctor I spoke to said there is some evidence that pain meds do have an effect but there is so little known about the root causes that it is just speculation at this point. You should consult with your doctor before doing this but he did recommend possibly moving the dosage times and seeing if this had an effect.
John
Deb…my Mother has dementia and was put on Aricept over a year ago. We didn’t notice a huge improvement and about 6 weeks later the doctor added Namenda. She continued her decline and we were very worried. She was moved from independent living into health care after a fall. The decline and confusion worsened and the nurse suggested DROPPING the Namenda. Her improvement happened pretty quickly. She is still on Aricept and is doing very well on it now. Hope this helps–I imagine every case is different–but the nurse at the facility said she had seen that a lot–along with improvement once the Namenda was eliminated.
Well here I am, I feelng so bad for my mom. She was fine in October and then she was in the hospital for some digestion problems and depresseion. They gave her respidal and some depression medicine. She is in assisted living, but after Christmas I took her home with me because she needed more help than they could give her. They got her on Welbrutrin and I took her off of respidal. It made her have tremors, etc. When she when back to assisted living in January, she forgot how to dress herself , how to sit down, food would fall from her mouth, etc. I had them do a cat scan and it showed an old stroke (couldn’t tell me when) and dimentia. She can dress herself but very slowly now and has a hard time buttoning her blouse, etc. Now she is going to a rehab to see if they can help her. The neurologist said she has moderate dimentia. and especially at night, she gets so confused between the telephone and the tv changer. I spend at least 20 minutes almost every night trying to explain which is which and how to use it. She tries to write it down. Then she’ll get my brother and do the same thing. During the day, she doesn’t do it at much. The neurologist put her on aricept this week. I’m just so upset. Is that a part of dementia. I hope someone can help me. Thank you
Terry–it can take several weeks for the aricept to begin helping and before you may see some improvement. I hope that it proves of help to you. For any of you whose Moms are suffering from Alzheimers –a dear friend of mine found that giving her mother a real baby doll–the baby type, not the toddler type, “woke” her Mother up to her mothering instincts. She kissed that baby every day and sang to it and nurtured it–now there is a program in her area to provide baby dolls to other Mothers suffering from Alzheimers. It was a joy just to see some of her Mother returning to her nurturing roots.
My grandfather is almost 83. He suffers from Sundowners sydrome. He has had alzheimers for almost three years now and just recently it has gotten worse. He is very forgetful during the day of everything. When the sun goes down and it gets dark, thats when my grandpa wants to go “home”, but he is at home. This is when he forgets who my grandmother is and he gets very abusive. We took his car and license away almost 2 years ago but he still tries to get in the car and if he does get in the car he will sit there for hours at a time. If you try to tell him to come back inside he will yell at you or curse at you. My grandfather is a very religious man and never in him 83 years has he talked the way he does now. Why is that? Why when it gets dark he wants to go “Home” and he goes off wondering and goes to his neighbors house and through their shed. I just want to know what makes him want to go home when it gets dark?
anyone willing to chat or to just vent please feel free to email me sometimes i feel like iam the only one going through this cathy
Cathy, I have been through all the stages of Alzheimer’s with my Dad. He has had it for about 12 years. He is in the last stage now and I would appreciate being able to encourage you. God doesn’t waste anything and He will use what my dad and I have been through…I know He will. Feel free to e-mail me anytime.
Take care,
Christi
Thank you so much for answering me. Today, my mom seemed to have no patience. I had to fill some papers out and it took quite a long time. When I got back she was clenching her jaw saying where was I, why was I there so long. I calmed her down and explained why I was late. I have noticed that she has no patience an ymore. During the day she is okay but I can see her going down, and like right now she had called, its 5:49 pm est, and she was confused about where to put the telephone, and how to call me. I am very patient with her so she doesn’t think anything is wrong. She is in a rehab place right now, to see if they can help her get stronger to go back to assisted living. If not, she will go to a skilled nursing place. No matter what, she will be not far from me so I can go daily to care for her. Wish they would find a cure for this. Again, thank you.
Sorry Meghan, i put your name instead of mine. I wasn’t sure what they wanted.
Cathy53,
My mom has been diagnosed with Dimentia and it is the hardest thing for me to believe it. She’s not real bad but I know it will be coming. Its so hard to see such a fun loving person be depressed, worried and anxious. If you need to talk, please keep in touch. No one is alone.God Bless You
I feel that those with Sundowner Syndrome are actually
exhibiting symptoms of electrical sensitivity or (EMF
Sensitivity). As dark approaches more lights start coming
on, the electric stove is used for cooking of dinner, people
settle down to watch tv, etc. This increased use of
electricity causes EMF Sensitivity symptoms in people with
medical conditions that are making them more sensitive. The
symptoms relieve an hour after dawn as the electrical load is reduced. This may sound strange, but consider it as an option.
-i am trying to find someone that can tell me ways to get through it when it starts i take care of my 95 yr grandmother it started after her last trip to hospital it use to go home when she came home this last time it came home with her. it seems to start at around 200 in afternoon and can last an hour or sometimes longer. then it is gone just like it never happened. i remind myself that this cant be helped but sometimes i get a little scared. cat726@mchsi.com any info will be a help.
John my 83 yr old mother is on Coreg as well and has suffered sundowners lat august while in the hospital for the first time, we were mortified and it seem some nurses and staff weren’t even aware of this disorder, once i got her home he was fine, then we changed the furniture around in January and we had a stint of a 27 hr straight episode, i was so exhausted, imaginary children peole hanging from the trees, but when she awakened the next morning to her it was all a dream, she was placed in the hospital with congestive hert failure and once again it showed its ugly face, she is now home an has not had any delusional visions, but still does not recognize home, i was wondering if the coreg had anything to do with it…. best of luck everyone….
Xandra my mom is on Coreg also. Her blood pressure went very high after she had a fall and didn’t go down so the Doctor Doubled her Coreg and Lisinpriol. I read where Coreg could cause dementia. I am wondering is this is making my mom worse> Thanks for any comments.
Terry:
I have long suspected that Coreg played a role in my mother’s
sudden dementia The effects of the drug can be quite profound and can
have both physical and mental consequences (including dementia) if there is a negative reaction. I asked her doctor to put her on as little a dose as possible. When he did, her dementia did lessen somewhat, but did not disappear.
Hope this helps
John
John, Thank you, I will call the doctor and tell him to give her just half. She needs is because she has a stent in her heart. I’ll see if that helps a little. Thank you very much for your help.
My grandmother is 98, and this is now a common every day life occurrence. She has 2 care givers one for the day and one for the night time. She too gets mean, and at other times when she see’s me, she completely recognizes me and is happy, awake and lucid for about 5 minutes. Then she goes right back into talking to herself again. The paranoia is there day or night this I can tell yiou. But she is a big coffee drinker and they keep changing her medicine. The question remaining is this: how much longer do we subject her to testing just to keep her around? Shouldn’t she just be kept comfortable and happy with her foods and her coffee? One more thing I’ve noticed, she started drinking soda and eating cookies, she now has a HUGE sweet tooth. Which she sneaks at nnight when she thinks the care givers aren’t watching like a child.
I realize that most of these posting are a few years old….I am a part time caregiver of my 94 year old aunt…we had her moved from independant living apt to an assisted living apt about 8 months ago…she is dilusional in the evening hours and thinks there are meters in the walls of her bedroom, is afraid to use the shower, doesn’t trust anyone but me….won’t leave her apt for dentist appts, dr appts or hair appts…HELP!! She take one med for High Blood pressure that she has been on for years and her BP is controlled and an occasional xanax…people, your not alone in your difficulties in careing for our elderly….and when us baby boomers age watch out…we should be finding treatments and facilities for this now….if anyone can direct me to some dependable assistance I would appreciate it…thanks
Hi Gayle,
I try to keep my dad is his safe zone, which is our house. I cut his hair, nails and take him to his Dr.’s appt. But, he is also on ativan every 6 hrs, but there are times that I will get him more than 1mg. I make sure around 4pm that he is home in his house and get him ready to go to bed at 8pm. That is what I do, but then again everyone is different on medicines. We have a family trip this week, and I am dreading it. Good Luck with your Aunt. Keep in contact with her Neurologist.
Bettye, that sounds almost exactly like my daily routine, good luck and God Bless…
Tom
Hey Tom, It’s tough isn’t it. Nobody really understands it, unless, they live it 24/7. My dad has the strength of a bull, there are times that I get scared. Tom, I spend alot of time on my knee’s. I can only give thanks to God, for the power he has provided me.
God Bless.
Bettye
Yes it is but fortunately I have some experience in dealing with people with disabilites because our daughter was mentally challenged by Rett Syndrome. But yes, it becomes more of a mental stuggle as well. My dad has Parkinson;s too , so he isn’t too active but during his Sundowner’s moments he becomes quite strong again. Hopefully you have some family to help you through this too, God Bless…
Tom
I am the daughter of a sundowner, my mother would show signs when in the hospital, but about a month ago, she started showing signs at home, first she was always thinking the doors were open and not locked, then she would get her bath room and closet confussed, she thought she was in a really big place and had to walk along way to the other end, now she is seeing people outside in the yard but noone is there. Her Dr. started her on a patch to see if the med would help her. She does not get voilent, but she does argue about seeing people. Mama is 73 she has 2 Aorta anurisums, she has osteoporisis,she has a leaking aorta valve,so you could say Mama is a walking time bomb, she lives with me and my husband and my mother-in-law, I am so fortunate to have a family that helps me take care of her, I have 2 brothers but they never come to see her, they call but never come unless I am cooking a big dinner which I have stopped I have to much to do now. I am an AVON Indpendent Representative and I was gonna give my business up, But, AVON keeps me sane. I love my Mama and I will keep her with me as long as I am able to tend to her, and I do hope she does not get fits of rage. At night she sleeps in her room and I have to leave the bathroom night light on for her and I have a bed side potty she uses only at night, because I am afraid she might fall during the night, she cannot keep her self from falling back words unless she is holding on to something, she uses a walker in the house, but she rarely leaves her room, We have a baby monitor in her room to my bed room so she can call me anytime I am not with her and at night if she wakes in pain, she is sleeping alot better now, but when this first started she would wake me 4 to 5 times a night and I finally had to sleep in her room a while. she could not control her urine so we started using depends, but that is better for the time being. We take her out to eat and she keeps looking around like she is looking for someone, she will stare at something for hours.I had to watch my Daddy waste away until he died, now I am having to watch a woman that I love act like a child at times and change everyday. I am so glad that she does remember God and feels like everyone needs him in thier life.Our parents take care of us and watch us grow and make so many mistakes inlife and watch us change as we grow I guess we become strangers to them, so when our parents get older it is our turn to watch them change and grow into strangers from a disease that is unexplainable. All we can do is pray for each other and give to the lord and lay our problems at His feet and let Him take care of us the way He has planned.
feel free to mail me.
My 76 year old mother is has been at a nursing home for 7 weeks recovering from her second broken hip. She has been very confused and making up stories ect which we attributed to the anesthesia. Now she has begun to beome very agitated at the Pt’s and Nurses, calling them names and yelling at them. It is very much out of character for her. It is definately later in the day and she seems to have forgottn all about it the next day. They have suggested she may have Sundowners, and they are going to do some psychological & neurological testing. Is this something that a definate diagnosis can be made, and are there any effective treatments?
Lori:
Lori:
I’m sure this will be echoed by other but there isn’t any real reason why this happens. By in large it is a mystery to medical science. Treatments vary and the effectiveness vary also. In short there aren’t any real answers or sorry to say real cures.
I have a very close friend who was just diagnosed ? with Sundowners. He is 88,
lost his wife about 2 years ago. He has had some health issues but with the right meds he is clear thinking and aptly used the computer. My question is how long is the onset. Is it possible to have no symptoms and within a few weeks be full blown sundowners? He was fine when I
spent a week with him about a month ago and we communicated daily by e-mail. Now EVIDENTLY he is incoherent a lot of the time.
Somehow this just doesn’t sound right.
Any info will be appreciated.
To Thors Mom;
Tragically from my experience the onset is quick and this is one of the reasons that makes this condition so hard to deal with. The rapid decline intermixed with times of clarity is so hard to fathom. The only bit of good news is in my mother’s case is it can diminish and there are times when things are realitive okay but I have found that this is not an indication of a reversial more of an ebb and flow type of situation.
I have just heard the Sundowner’s Syndrome the last few weeks. My best friends husband has dementia, Parkinson’s disease (just now showing the symptoms) and Sundowners disease. He was put in a nursing home last week. Fell the third night and now is in the hospital. She has been his 24/7 caregiver for the past 2 years because she is in denial. Now she is having seizures and has a loss of memory problem. I feel 80% of her problem is the 24/7 care she has given him. She can’t sleep at night because he is either up and piddling around in the house or he quits breathing (sleep apnea) and she counts to 8 and then wakes him up and tells him to breathe. I don’t know which one of them is going to go first. It is just heart-breaking to see. She just turned 59 and he is 65. Any suggestions on how to help her other than encouragement and friendship?
Thanks!
I had a friend whose grandmother was in her late 90s who was affected by Sundowners. She would get very confused and constantly insist that she was not home and kept wanting “to go home”. I suggested to my friend to simply put her in the car, drive around for about 5 minutes because invariably she would “want to go home”. Then take her home, which she’d recognize (most times) and then she’s quiet down and be able to fall asleep normally. She was usually a very calm individual during the day but could get extremely agitated during the evening, and particularly during the Winter.
As this article describes, it is a mystery and a ‘syndrome’. I think lighting is definitely the key factor here and by finding some natural lighting that are set on timers would help.
Good luck
i wish there was sone sort of chat room where we could get on and talk to each other something like a support group
Hi Cathy,
I’m working on it. A failed attempt at it a few months ago set me back a bit. It is in the works and should
be coming online, I hope, before the end of July. Thanks for your participation in the website.
does anyone live in the sussex county delaware are iam trying to find a doctor to come to my home for my 95 year old grandmother and am having no luck she is bedridden so getting her out is not an option. it is very hard being a 24/7 care giver i almost never get a break. even going to the store is a big deal. my only help is a state home health aid that helps me bath her and change bed clothes 2 times a week.
I have written to a couple of you who had your email addresses available. To the rest of you I urge you to go to http://www.emofree.com which stands for Emotional Freedom Technique. There is a short video which you can watch. Also you can subscribe to Gary Craig’s enewsletter free and download the manual free. It is an extremely effective technique to use on many challenges. It may not help your loved one but it can help you deal with it more effectively. I sincerely hope you find this useful. Jan
My mother was diagnosed with vascular dementia 4 yrs ago.I have been the only caregiver for years.She is 86.She has been in the hospital for 4 weeks awaiting placement in a nursing home.Her sundowners has started again.Unknown to me the hospitalist put her on Haldol(3 doses).Her daytime agitation got worse & 3 days later it was as if she had Parkinsons.The doctor refuses to admit it was from the drug.Her symptoms of Parkinsons have subsided(10 days later).Last nite her sundowners acted up..guess what! The doctor prescribed Ambien and Haldol! I went to the hosp.at 1:30am & stayed until 3am. I gave her Melatonin,which had helped at home,hope it helped at nite.How can I get the hospital to stop giving her drugs with definite black box warnings. Benadryl helped,but affected her kidneys. I think she needs LESS light so her body can use whatever melatonin is available. She calmed right down when I got there.The medical profession needs to realize that conventional drugs DO NOT work for sundowners.
My 97 year old aunt had very mild symptoms of dementia until about 4 or 5 weeks ago. She started getting very agitated, confused, hallucinating, and combative. The assisted living facility where she lived sent her to the hospital and she was diagnosed with a severe urinary tract infection. As the treatment progressed, her symptoms diminished markedly. However, the infection returned when she went back home to the facility and now she is in kidney failure. She is again combative, hallucinating, feelings of persecution, confused, etc. These symptoms are intensified in the early evening and all night. Have your loved one screen for a bladder infection. Poor toilet habits and not being hydrated can intensify dementia symptoms. My aunt has always been mean. But she has gone to another level of “mean-ness” I once read that whatever your personality is when you are young will be intensified in old age. I don’t know how many of your loved ones this holds true for but in our case, this is what has happened. My grandmother was 98 and her last months with dementia found her very subdued and almost catatonic. She was always funny, creative, and always very pleasant. I hope to go out the same way.
For the caregivers…I read an article recently in AARP called “The Promise”. In a nutshell, the article said that many of us live under a “promise” expressly given or implied that we would never institutionalize our loved ones “when the time came”. This was true of myself and my parents, too. But I have released my children from “the promise”. I have made arrangements by getting longterm care insurance. I found the assisted living facility and nursing home for them where I and /or my husband want to go. I told our children in 18 years I/we may need to live with assistance. I told them that they will then be the age I was when I discovered the joys of the empty nest and increased financial security because our children where no longer sucking at our finances like udders. At, 53, we began to travel, ride motorcycles, bought an RV, started cruising the seven seas, etc. I told them that we want the same for them and not to be strapped down under the burden of their parents care taking needs.
So, caretakers, crawl from under the promise and take your lives back. This does not mean tossing your loved ones in the garbage. It means being an example to your children and friends and showing them how to take care of themselves, first. You will not be able to care for anyone if you don’t keep yourself healthy and relieve the stress.
I just found this site and am glad/sad to read the posts. My mother (83) just started getting anxious, paranoid and confused over the last few weeks. A CT last night in the ER showed multi-infarct vascular dementia. She seems lucid in the morning and gets progressively worse as the day goes on. She has called me at 1:00 in the afternoon and at midnight complaining of severe pain or mean nursing home staff. At this point, I’m not sure I believe either as the pain usually disappears. Sundown on the East coast isn’t until 9 in the summer, so this could be named “cocktail hour syndrome” instead – an association that may need more investigation IMHO.
My Dad has Parkinson’s, dementia, and now Sundowner’s. He is in a carehome but when he became agressive they took him to the local hospital physic ward for almost 2 weeks. I can’t imagine why he’s confused? I really do believe its partly because of the vast amount of meds they cram down their throats to control them. I know its not an easy task to be a caregiver! I’m long distance so I can only give encouragement and empathy. I value the imformation that I can get from sites like this! I’d never heard of Sundowners before recently. Thanks to all for your input! Kay
My grandmother has alzheimer’s Disease. She was diagnose with it about 5 or 6 years ago. No one wanted to believe it, So my uncles and aunts swept it under the rug. Well this year I moved in to help take care of her and the first couple of weeks were good, real good. Then she started seeing things that weren’t there during the day and night. She started staying up all night and therefore I stayed up all night. I was really scared because she started using her cane to it at whatever it was she say. She started seeing my grandfather and he has been deceased for over 20 yrs. Then I was really afraid. She got out the house a couple a nights ago and she argued with everyone who tries to help her. Now she’s in the hospital and I don’t know what to do. Can someone give me some suggestions???
Hello i am a 21 year old, I am not sure about anything but i am looking into this. so far i do feel more emotional at night i thought this was normal but it does affect my sleeping patterns so i looked into it, is it possible to have sundowners at such a young age from what i have seen it is mostly a problem of alzheimers. and another question why is it during the late evening not near supper in early evening it usually changes near 9-10 pm usually please someone help me out Thanks
Try getting the lights they are speaking of here. The artificial sunlight lamps for seasonal affected disorder. This might help as it has helped others on this site. Also another poster (the army guy) said he was diagnosed with it when he was 2. its rare but does happen to young people. I would say try the light and talk to a doctor. And work HARD on other thoughts if you can. I see that my father can not push his thoughts out of his mind and the anxiety builds so much its all he knows. I feel if he could push it away from his mind he would do better. So do practice if you can while you are at a young age.
sorry please notify me by email with follow ups might have unchecked that by accident thanks
Nice to know others are going through this. My dad is 83 and has been going downhill since they tried knee replacement surgery three years ago – he didn’t do well in therapy and went into assisted living, then lost the use of his legs (for some reason – they think mild stroke) and now has to be in the nursing home because he is incontinent and can’t move himself. He’s been sliding downhill since he went into the nursing home – Now the late afternoon/evening periods of confusion and anxiety have increased – last night the center called me at 10 pm because Dad didn’t know who any of the aides were – he’s been on good terms with them before. The doctor wants to screen for a UTI – didn’t realize until I read this what the connection was. Last time they gave him antibiotics for a UTI he got really bad stomach problems. I feel that this dementia/sundowners is, in my dad’s case, just part of being old and drifting towards death. Is it wrong to not pursue aggressive medical treatment and just accept the dementia as part of the natural aging progression? My mom says that life in old age is so uncomfortable so that people have an easier time letting go of it.
I do think that dementia/sundowners is part of the natural aging process…lot of factors enter into it…in my aunts case a lot of it has to do with a move…she has all her belongings and an apartment that looks very much like her old apt but the people she made friends with are all gone and the new facility’s memebers are very frail and not as independant as the old apartment…she is very hard of hearing so that has a lot to do with it too as she doesn’t hear what is being said and tends to imagine what is said….then throw in the short term memory loss, it is enough to make a young person whacky…..we all try to get her to stay active but she refuses to leave her apartment other than to go to the dining room to get her meals twice a day…..she panics about money as we handle her finances now, she is incontinent so we have to make sure she has supplies, necessities…she never had children so her sister (my mom) who is 86 and I are her only family…My time with her is very limited as I work a full time job outside of the home 58 hours a week and have two homes and a husband and mother to care for….she is in an assisted living facility that provides all her meals and extra help for a fee….i tried to hire them to help her with showers….ummmm, that didn’t go so well….she insists on sponge bathing…..so I left that alone for now….she also told housekeeping that she does her own laundry….NOT…so I told them to strip her bed and do what they are hired to do…she can’t even work the microwave let alone a washing machine….they do daily house keeping and a weekly total clean……it is a very nice facility…..
Dementia is not going to happen to everyone but it is certainly part of the aging process and a byproduct of mentally degenerative conditions which occur when strokes, Alzheimer’s and Parkinson’s diseases occur. Lonliness often supports these conditions because the social abilities are also effected. And not everyone gets Sundowners either but again this is also a brproduct of the various diseases I mentioned earlier. Alzheimers mainly effects the braincells and destroys them which in turn lead to cognitive failures and eventually full-blown Dementia. Alzheimer patients may still perform some essential functions but Dementia suffers often lost the function to remain social…
My grandmother is exhibiting symptoms of sundowners, So I am looking for answers. I am involved in a program called Project Lifesaver – it is for clietns who wander due to Alzheimers/ Demnetia / Autism etc. It helps me understand it all a little better and it is a great program. The caregivers tell me that it gives them great peice of mind. Thanks for the info on this site and letting me vent a little. bye.
my mother has alzheimers and sundowners. she is 80 and still lives alone. for the past 5 months she has started imagining that she is keeping her great grandson, Hunter. She calls me, her daughter and another daughter and son in a panic stating that she was keeping Hunter and now he is missing. We assure her that Hunter is with his mother but she is firmly convinced that he was at her house and now is missing. we go through this just about every evening. She has spent the night at my house many times and will get up in the night looking through the house for Hunter. Before we go to bed I remind her that we do not have any children in the house but it never fails, she gets up, goes in all the rooms, looking for Hunter. Any advice on how we can better handle this situation?
thanks,
Judy Brown
Thank you to all who have submitted information..I am grateful to read that others have the same challenges. Comforting to me. When I stop being so emotional, I will share. thanks
I work with people that have Alzehimer’s. I have noticed that they all suffer from some type of Sundowners Syndrome. I have also known they can be combative at times. We had a resident who had it really bad and she would be awake all night. Her family brought in a lotion that we would put on her at night and it seemed to help her sleep.
There was a recent post about dementia and a UTI. It is common for the elderly to acquire dementia with a UTI and it normally resolves with the resolution of the UTI. Dementia can also occur with other infections as well but for some reason most often with a UTI.
My mother-in-law has recently begun exhibiting symptoms of dementia and sundowners. Much to my Father-in-laws dismay her doctor is only concerned with addressing her other health issues not the dementia at this time. There is an old post on this forum that mentioned use of light. My first thought when I learned of this condition was light treatment. Full spectrum lighting which very closely simulates daylight is used to alleviate symptoms of seasonal affective disorder and symptoms of depression. This light is not a damaging light such as the UV light used for tanning. The recommendation is to install the lighting in an area where the most time is spent, such as an area for watching TV or reading. Because of sundowners being related to light exposure I am curious to see what full spectrum light would do for it. I am wondering if a couple of extra hours in the evening before sleep would help. I suspect that in many cases it would probably need to be on at a lower level in the bedroom all night or perhaps at full brightness in some cases. I hope this information is helpful.
Don Heese
My mother’s friend is a 85yr old WWII Vet. who has been diagnosed with Sundowner just last week and probably will be placed in an assisted living facility. My mother has been his live in Housekeeper/Cook for the last 8 years. The VA was giving him various drugs for diffferent health reasons over a 2-3 month span of time. He was getting addicted to the pills and started a slow decline of his physical health and then his thought process was declining. This all happened within the 2-3 months period. His sodium level is slow low the Docotors seem concerned but have not treated it. I have read up in books and the internet how these pills he was on could cause most of his physical/mental symptoms and the Doctors took him off the pills. Of course they will not acknowledge my input and keep trying different medications to help him sleep/anxiety/restlessness. Today I looked at the Life Extension Magazine site and have found many Holistic remedies he could try to help restore his health and slow the decline of demnetia. I wonder if any of the peoples who wrote about their family members have tried any Natural remedies?
My mom is 93 with advanced dementia. I have taken care of her for 11 years now. My brother, a doctor, does not help even though he lives close by. She is on no medication except Plavix. She has no physical problems. She is still ambulatory (shakey) and is continent. She is terrified of being alone. I can not even go to the bathroom without her standing there watching me. At night she wakes up about every hour calling “mommy, mommy” or my name, and walks to my room to find me. Recently she has started having periods of “spacing out” when she looks dead and is nonresponsive. Her b/p and pulse are fine during these events. She has also started twitching, panting, writhing around on the bed, and being violent at night – tearing at her clothes, agitated, talking nonsense non stop. She has been seeing people for a year or so that aren’t there. I am exhausted. I can’t afford to hire someone to watch her all night. I have someone watch her during the day so I can go to work. My husband is a saint, but he is at his wit’s end. We can’t afford 6K a month for a nursing home, and if we could I wouldn’t do it. They would tie her in a chair, sedate her, and let her die. The doctors can’t help me as she really doesn’t have any underlying medical conditions. She gets violently delusional when any dementia drugs are tried. I know no one can help me, but it feels better just talking about it!!
God Bless you and your husband,both of you are saints. My Dad suffered a heart attack having 2 bi-pass
surgey`s in a row.Once he was put into ICU, he was restained. Since he`s been home from the hospital he`s been violent, not sleeping for days, talking about the dead as if these people are still alive, & non-stop talking non-sense. He`s surgeries were in Jan.2012. Now doctor`s are saying he shows symptoms of Sundown`s. Maybe we cshould look into taking him some of his meds, your story helped alot. It`s exhausting, just tough on the entire family but,Despite it all ”God Is Good”.
Hello Nickey,
I remember when this first started….They found ammonia in his blood. My dad came 85% out of the Sundowners and Dementia. This last surgery was also in Jan 2012. Now, he is full blown in Sundowner’s and Dementia. I know around what time he starts getting very agitated so I prepare his meds at least an hr before it happens. I have to keep my dad busy. I know exactly what you are talking about. It’s tough.
May God always bless you and your family.
Bettye.
There may be some sleeping meds that are antipsycochitc that you can try. Look for a doc who specializes in the elderly, That may give you some clues… you are doing a great job. Best
My father inlaw just came to live with us about 4 weeks ago. He has had Alzehimer’s for the last 6 to 8 years. He is angry most of the time and at night it gets much worse. He has started to throw furniture about the house and hitting people. I’m really afraid he will have to go into a mental home for the elderly he is 92 years old. Has anyone out there gone through this?
“Thank you”, to all, and I am so sorry you all are going through what I am going through! My mother-in-law has come to live with us, at MY request, not her two son’s. They want her her far away from them. The history with the two boys and her her (dearly) departed husband has confused me, as no one has really told me what the issues have been, other than her “…being a mean b…. the entirety of their lives.” I have a history with her as well, altho not as extensive…she has been unbelievable. I only mention this as I feel that it is effecting our (mine, as I really am her sole caretaker) abilities to be objective about the meanness that is coming through now. I went to see the facilities for assisted living, and it broke my heart to see the different places that offer an “Apt.”,( which is only a room the size of a medium bedroom, and they are supposed to make that “home”!) Soooooo, I said I would bring her into our home, until I could no longer take care of her. She was very frail when we got her here (even though she spent 6 weeks in rehab!?!!) and now she is back to her strong, belligerent self, up all night, slamming things around, t.v. on LOUD, wandering all through the house, yelling at me for “disturbing HER peace at 2:30 in the morning” when I ask her what she is doing and that she is waking us up. As most of you have experienced…the list is long. She is on many meds that she has been on for most of her life, ( no, they have NOT been the reason for mood or attitude, according to the boy’s, “Mom has ALWAYS been like this, LONG before meds came on the scene) Aricept and Namenda being the newest for the dementia. It takes HOW long to see improvement’s, if at all?
I guess, as I reread my words, my reason for writing is ” vomiting ” the poison that seems to infiltrate the ‘sanity’ that was. I want the ugly side effects of this ‘illness’ to be less harmful to those of us who love extensively and offer parts of our heart’s up for sacrifice. It hurts like hell to see this, AND to be the target. How long do we suffer before we say enough and let someone better equiped take over, or we too, become victims to our own side effects of this ugliness??? My heart breaks for what she must be experiencing, and yet I find myself vacilating to the angry side of what her old self is doing to ALL of us.I cant tell what is the diseased side of her, and the real her!! I have been the cardiologist numerous times now, and dont want to end up leaving this world before the real reason I am going….this sounds so mean, doesn’t it? How does one deal with the “emotional self” side of this all? I am losing me, and she is not even MY Mom…..
And I cant thank all of you enough for your experiences with this, the ‘what you’ve done’, the ‘what works’, the ‘what doesn’t’. It DOES help, although one doesn’t
wish this on anyone. Not the victim’s of dementia, nor the victims of those with dementia.
Nobody has diagnosed my mother with “Sundowners” yet, except for me. I am actually going to print out some medical jargin on it for my mom. She was a nurse at one time (the worst possible patient) and she appreciates medical jargon, as opposed to anything I could offer to her, verbally. I know nothing, and never have (long-time history with my mother). I am new to this website, and I don’t know if there is a way to comment or respond to postings, other than to just post. I wanted to respond to Cloe. You sound very alone and despondent. Caring for an elderly patient is difficult, and when you throw dementia in there, you’re looking at an almost impossible task to take on yourself. I strongly suggest that you pay for help, particularly at night. Employ an individual who has experience in this area. Or, if you can afford it, find a care facility. It is not your job to care for anyone, it is a choice. God will love you, no matter what. But, when you find yourself at wits end, this is a sign that you need some help. You are only human, and you have a responsibility to care for yourself as well. Shame on her husband and his siblings for not helping her, but that’s going to be their own problem with God. They should at least open up their checkbooks to get some help for her. She needs help, but that doesn’t have to be you.
My mother’s life changed early this year. She’s had several medical problems, which have put her in the hospital and also nursing facilities. This is when we saw the dementia begin. It was when she was out of her comfort environment and surrounded by strangers. She didn’t see much daylight in her first stay in the hospital, and she started a paranoia that someone was controlling time. My mother always was a feisty, “I am right and everyone else is wrong” kind of person. She can be quite a handful these days. She is hanging onto her brain, and if she gets agitated at people during the day (usually at me or her staff), she can be calmed fairly easily. But her words can hurt. I have to remind myself that she is not mentally well, and I am. At night, she sometimes hallucinates, she chats to herself, she only sleeps at an hour at a time, and she makes demands on her staff (she’s at a private care home) throughout the night. If they argue at all with her, she flips out with anger. Anger is an emotion, fear is an emotion, as is sadness. These emotions can take over rational thought in a normal, healthy person, imagine what they must do to a fragile elderly person. The care home is not able to care for my mother, because the staff keeps quitting. It is hard to find angels. So, now I am looking into dementia care facilities that can accommodate my mother’s needs. No one in my family is willing to have her stay with them, because she is so difficult (my house is also too small), so she’ll be moving to a new, unfamiliar place and the dementia will be worse for awhile. Caring for an elderly parent is not for the weak of heart, is it?
Here are some of my thoughts on this “mysterious” Sundowner’s Syndrome: Something happens to all of us around 4pm to dawn. I always felt it was the magnetic pull of the moon, or something. When my children were ill, I always saw their fevers or symptoms escalate at around 4:00 and it wouldn’t break until dawn. Happened every time, especially with my more sensitive child. My diabetic (type 1) daughter went through a common “dawn effect” when she was in puberty, where her need for insulin increased from about midnight until dawn. I do think that getting the patient outdoors frequently during the day (or using lights) is important, as is trying to keep them active so that they are more fatigued at night. But, I believe that the condition is just a natural thing that can happen to those who are most sensitive to their environment; children and the elderly, in particular.
I stumbled on this site by accident as I was googling a new med for my 95-year old mother-in-law. It seems that the symptoms of sundowner’s fit her exactly. I have been staying with her at night since Dec. 6, 2006 and with her 24-7 since June 20, 2008. A real Dr. Jeckel and Mr. Hyde–she says the most hurtful and mean things to me and sometimes to her son, my husband in the evening. In the morning she remembers nothing. The trouble is–I DO!
Our relationship has deteriorated from one of friendship in 2000 when her husband died and she came to live in a mobile home in our yard, to open hostility and unveiled dislike. I KNOW she has dementia, and that she doesn’t know what she is saying–how then can she calculate the one thing to say that will absolutely get on my wires immediately?
I recall an embroidered saying on the back of a jacket my cousin wore after he got back from Viet Nam: “I’ve got to go to heaven–I have spent my time in hell.”
I KNOW her suffering is worse than mine and I try to be patient, but I see the breakdown in how much I care–that things that used to really concern me, like whether she has her jacket on wrong side out, don’t bother me. I don’t like how her sundowner’s affects my own sense of self-worth. I used to really like myself–now I feel like a shrew. ARRGH!
I hope every person who joins this discussion goes all the way back to the first post and reads every single one written since then. What you will know for sure is that you are NOT alone! What seems to us as strange and unusual behavior in loved ones for which we are not prepared, can be seen for what it is…the insidious disease of dementia.
If you don’t feel strong enough to be a caretaker, you will find out that you are. If you think you are the only one who loses your temper with a loved one, you will discover that you are not. If you can’t sleep, feel agitated, guilty, depressed, etc., you are not alone. You must find a way to take care of yourself. There is no reason that two people should live in the same nightmare.
For three years I have watched my mother go frm mild cognitive impairment to full blown Alzheimer’s. She is finally at peace in a weird little world in her mind. She is a Medicaid patient in a nursing home and she gets good care. They don’t care for her as if she is their mother, but they are kind and watchful. I didn’t think I would ever get my life back, but I can visit just 2-3 times a week for half an hour and that is just fine with Mom. She doesn’t make any sense when she talks, but she loves hugs and smiles. For a while I didn’t think I had any hugs or smiles to give because I was completely worn out…and angry. Be kind to yourself. You are just one person doing the best you can. At some point you have to let go of the person you knew and befriend the body that was your loved one.
My father has been showing signs of his mental faculties deteriorating for some time, but he was finally diagnosed after he caused a car accident and nearly killed both himself and my mother. In the hospital he became very belligerent, especially at nighttime, and we were told it was due to ICU psychoses. He had also received a very nasty head wound in the accident. CT scan was okay, but they started him on the drug Haldol. This produced hallucinations and sedation to the point, where I would have to make sure he was still breathing. We transferred him to a nursing home, but my Mom retrieved him after 5 days because he called her crying every night, begging to come home. We have home health therapies set up and I take care of all of his medications (20 in total). Once we got him home, he became the man he was prior to the hospitalization and I thought we were out of the woods. 3 weeks after being home he has started having the “sundowning syndrome”. He thinks that my Mom is a total stranger and after having been married to her for 59 years, refuses to sleep next to her because he thinks he is being unfaithful. He thinks my daughter (his granddaughter) is me as a little girl. My Mom looks so worn out both physically and mentally and I just ache to see her this way. I thought we had been granted some more time to share as a family, but this is miserable. I would appreciate any insight into this awful disease.
My mothers doctor put her on aricept 6 months ago on a trial basis. In one month’s time I noticed a slight improvement so I decided to fill the script only to find out it was $200. My mother does not have drug insurance so I decided not to fill it. I did try to write to the drug company because I have heard that sometimes they give assistance but I never heard back from them. Mom is now in a nursing home setting and has been diagnosed with Sundowners. I am feeling really guilty that I should have kept her on the meds. Does anyone know of a less expensive drug or where I might get it less expensive.
Susan
Hi,just reading all your posts have helped me today. Thankyou, my 89 yearold aunt lives with me and she basically is doing well for her age, but she has started seeing people in her room at night, to where she comes and gets me, last night it was about every hour, finally I turned her tv on and it seemed to do the trick, it took her mind off of it. I was wondering if it might be sundowners?
Thanks for listening,
steph
As children, partners, and friends of Sundowners, we share a common role. We become a beacon of light in a Sundowner’s dark world. My Dad, who’s almost 83 has Sundowners. It rudely moved in and has taken over a his life. I am blessed to live next door to him in an adult style community of homes. I first became aware of Dad’s problem Christmas Day 2008. My Mom is in a nursing home, but I brought her home for our family Christmas Dinner. As I was busy in the kitchen putting the dinner on the serving table, Dad turned to my brother,and said, “We should go pick up Mom for dinner.” But Mom had been sitting right next to him for the last 3 hours. On grey days and winter days, he’s totally lost. At night time he’s beyond lost. Everyday, I turn on all the lights in his house, the bathroom, den, kitchen , foyer, and this helps. When the sun sets each evening, Sundowners, comes in and steals his mind, destroys our family relationships, and slowly begins the nightly torment of his mind. There’s never enough light to drive Sundowners away. It’s tough on the Sundowner and their caregivers. I know how each one of you feel. I find great comfort in God’s Word, especially in Psalms 23. I am so thankful the Lord walks beside me each day, He supplies all my needs and more. Blessing to you and those you love with special needs. May His Light always shine in your life.
I wonder if any of you out there has a problem of a sundowner’s loved one who will not leave there clothes on at night? This is becoming a problem bwcause my 95=year-old mother-in-law is incontinent and I have been really lucky thus far that she has alerted me in time to her toileting needs, but
—sorry–my internet just shut off–I couldn’t edit out typos before previous question was apparently sent
My problem is that my incontinent 95-year old mother-in-law has (since coming home after a two-week hospital stay for a UTI and pneumonia) started the new habit of taking her clothes off in the evening. How can a “feeble” frail woman who gets out of breath after ten steps have the strength and dexterity to take off a pair of sweatpants and her Depends without setting off the bed alarm?? Her evening meds are usually just Tylenol PM, and her other meds trials, (which have not helped except to knock her out for four hours, Xanax, Haldol, Ambien,)do not seems to help. Neither can I rationalize with her that she needs to leave her clothes on for hygiene’s sake. I thought about tightening a sewn-in drawstring in all her pants so that she could not physically take her clothes off, but she hates anything tight. The goal is to keep clothes on, not cause further agitation. She is not rational enough to offer any reason for stripping. Thanks for this very helpful site. Wherever unending attempts to find solutions to frustrating problems go, so go we!
My mother lives 700 miles from me and I just learned she was placed in a nursing home and is now in the hospital with bleeding and nutritional loss. They say they don’t know the source of the bleeding. I’ve been reading up on what they say my Mom may have, Sundowners. If they are administering anti-psychotic drugs to Mom then there’s no telling how her brain and body will react to those drugs. I have read several of these folks issues on here with loved ones behavior who are on these crazy anti-psychotic drugs. These drugs can cause all kinds of side-effects and any psychotic drug can cause more psychotic behavior. Every single one of them can cause psychotic behavior.
It’s absolutely absurb what’s going on with these drugs and they keep administering them. When I read your poor 95-year old mother has been put on these drugs (Haldol is very strong) it doesn’t surprise me that she can take off her pj’s. They tried to put my husband’s aunt on an anti-psychotic in the nursing home and the first one the doctor prescibed was one that would have interacted with her other medications and if I hadn’t caught it then it’s hard telling how that drug would have affected her behavior and her health.
You mother is on not one, but THREE drugs that are designed to target her brain cells and they all have terrible side-effects. I know how drugs can affect your behavior and your health because I had a long-term sprint with Cushings Sydrome in the 80′s and they put me on and off of anti-psychotic drugs. I’ll have nothing to do with them and I would never have myself or anyone in my care on anti-psychotics. They can cause suicidal urges as well but the doctors keep on prescribing them, even to people who are already suicidal.
I will bet they have my mother on an anti-psychotics already, if not multiple brain-altering drugs. It is a hellish thing to do and that’s why I won’t put my loved one in any medical facility to die, among other reasons. I am trying to get my siblings to agree to let me have her. I would rather deal with her issues and the inconveniences they cause than to live with this uncertainty of what is happening to her and being done to her by strangers. I know what’s involved in caring for sick elderly relatives, my husband had five that we were directly involved in.
You and your mother are in my prayers, Brenda. There is help for these things without using drugs. I reccommend Doug Kaufmann and other holistic websites for non-medical direction. However, here’s something I just found that may be helpful. Except for the drugs it refers to, I believe these are helpful suggstions:
What to Do for a Person You Suspect of Sundowning
Possessing a clear understanding of what a person is going through will go a long way to preparing your mind and body for a healthy response. Gerontologists recommend staying calm and reassuring to convey a sense of peace and tranquility. Never confront a sundowner, accuse them of being irrational or try to convince them that the feelings they’re experiencing aren’t real. Suggest a soothing drink or a nap to help restore balance. Close drapes or shades late in the day, and divert attention from clocks and watches. Involve the sundowner in a favorite structured activity. Additionally, make certain the sundowner’s basic needs — like hunger, thirst and hygiene — are being met to reduce stress. When all therapies have been exhausted, turn to oral medicines, patches and other chemical therapies being fast tracked by medical researchers. At the most extreme, antipsychotic drugs and/or sedation may be prescribed to help sundowners find peace from the storms raging in their brains.
I’m still reading about Sundowners and I want to address Chloe’s August 31st posting.
Hi Chloe, when my husband’s 88-year-old aunt suffered a brain-sroke in Jan 2006 we were trying to care for her at her home rather than put her in a nursing home. The doctor said she would respond quicker if she could be in her familiar surroundings. I knew this would be taxing on my husband and me but I wasn’t working outside the home and I could devote the time to her. The first thing I did was ask the hospital (Medical College of VA) about any support groups or counseling that we might be able to receive to help us better understand his aunt’s condition and how to serve her needs better. As a result I found out we qualified for a FREE counseling program for families of head trauma victims. Actually, they made an exception for us because the cause of his aunt’s brain stroke was not head trauma, it was instead the drug Coumadin, a blood thinner commonly prescribed to prevent heart attacks and strokes. Isn’t it ironic that the drug prescibed to prevent a stroke was charted as the cause of the bleeding in her brain. It was also noted on her chart that she was not to receive any blood thinners ever again, not even aspirin.
Anyway, Chloe, the point of all this info is that you need to seek out a support group and if possible please get counseling. Contact your local hospital(s) and see if they can give you direction. I think this website is wonderful but you need someone to talk to who is trained to deal with the issues you are facing. What we soon discovered in our weekly sessions with a hospital psychologist is that WE needed the counseling as much for ourselves as for his aunt. Without it I know we would not have been able to cope with all the adjustments of caring for his aunt’s condition, and with it we were fore-armed with information that helped us serve his aunt’s needs better. I’m sad to say she eventually did have to be admitted to a nursing home but nevertheless we remained actively involved with her care until she passed away.
We have well-meaning friends and family, Chloe, and its very helpful to have them as support. But they are not trained in how to equip us with the knowlege and skills we need to help our failing relatives and to keep our ownselves healthy both mentally and emotionally. And in your case, you don’t have much if any support at home. So please serve your own needs and then you will be better equipped to serve your mother-in-law. But, if you find yourself sinking, Chloe, then recognize that sometimes, no matter how much we want to care for someone at home, it may be in their best interest and yours for them to be placed in a nursing home. I know I said I would never do it, but that was not taking into account that sometimes we just aren’t physically or emtionally able to what we most want to do. And, remember, you can still be very active in her care. I was at the nursing home with his aunt daily, I even did her laundry rather than have them do it. I kept track of the meds they were administering, we had weekly sessions with the staff at first and then monthly. You don’t have to feel like you have failed her because you have not. You have given her a wonderful gift of yourself and she may not realize it but forgive her. But please do get in a support group now and keep it up even if she has to go to a nursing home. Be well, Chloe, you are in my prayers.
I have had the worst experience of my life this year.My mother has dementia.Ended up in a ?good? nursing home and has gone downhill since then.She was a nice little lady with dementia. Since they do not have any activities,she had nothing to do.Within 7 days she was put on depakote & paxil.That was the last time she functioned.Within 21 days she was on baby food & mechanic lift.She is now on an extremely high dose of depakote & haldol.She cannot talk,use her hands,open her eyes.The nurses won’t even acknowledge or chart her lethargy.When she is in a stupor,they say “she’s real good today”.HUH? A good day for employees,but not her.She cannot chew or swallow.She no longer has the urge to urinate or have a bowel movement,due to the haldol.She might have only days or weeks to live because of weight loss,dehydration,decrease in respirations.This woman functioned upon admission!! The nurses will chart her “misbehavior” but not the adverse effects of the medicine.This is clearly negligence,behind the mask of treatment.
Remember to be your parents advocate!! They will become victims a/k/a prisoners in a nursing home.
This is in reply to Beckys advice to Chloe. Becky: I am not sure what state you live in,but in my state the nursing homes DO NOT want a family that tries to have input on their loved ones care. I gather from what you wrote that you do not know how nursing homes really operate. It’s called:D-R-U-G-S. How many people have you heard mutter the same thing: “my dad went downhill when he went into a nursing home”. The reality of it is that they drug people.That’s the answer for behavior problems/issues.They can spend a few bucks a month on old fashioned psychotropics to quell any human features a resident has left to make them easy to take care of..plus get more money from Medicaid. The flat rate is low,but once you add on feeding,hoyers,tubes,etc they get a few more bucks. When the nurse says dad had a good day…good for them,he’s like a vegetable so he was no problem…bad for him because all he did was eat,sleep & defacate in his diaper. Remember Dad used the toilet before he went in? Hmm..wonder why he’s incontinent? Ever notice the lack of fluids for residents? Yes,the more they drink,the more they pee,the more diapers they go thru. Ever notice a strong urine smell? That’s because limit their fluids,save on diapers?Awake & oriented? Then they better have more staff and activities for the residents. I have seen facilities that allow 30 minutes for a meal,not done eating? Too bad Dad..off to bed you go. They are like planes on a tarmac ready to go to bed. Yelling?fussing?trying to get around…awww are you tired? Do you want to go to bed? Yes,under the guise of getting less money from the government they cut back,but the Administrators still have a nice BMW or Mercedes.
Cash pay? Well..then it’s like you are in a no-kill shelter.They will keep you alive forever! Cash is twice what Medicaid pays.
It’s a lousy system…animals in the SPCA get treated more humanely. Would the employees of a nursing home allow a physician to drug their children into a stupor? Would the government allow it? Absolutely not..but seniors are treated like kleenex..used and in the garbage.
I’m disgusted and the system is disgusting.
And the geriatricians that are “wonderful”…aren’t really.They just know the right narcotics to use to “taser” Dad or Mom.
I hope all you health care “professionals” that read this see yourself. We all have to face the same maker..and while you are doctors and nurses are ruining our seniors..God is keeping score of the credits and debits.
you have it all figured out.smart.keep at it and fight for all the poor loved ones suffering.been there and am going though again
Marcia, your situation sounds terrible and it must be extremely difficult to experience. Why don’t you move your mother to another nursing home or get her on hospice? Much or all of hospice fees may be covered by medicare. Hospice was terrific for my mother and we were pleased with the services and compassion they had.
Hi Marcia, on October 22 I posted TWO posts. Perhaps you didn’t read the first one I posted about my mother just before my post to Chloe. If you did read it then you weren’t paying attention because you are very angry about health care and I can certainly understand why. There are most definitely situations throughout the country like you have described. I’m not attacking what you say at all.
We live in Virginia and the nursing home is located in a small town where my husband’s family has resided for most all their lives. It’s a small nursing home, only about 60 beds. It’s probably the exception, not the rule. However, I have volunteered in larger nursing homes in various cities and states over the years and I personally know people who work in the health care profession. My own mother worked in nursing homes in various states and was an administrator of a private nursing home in Michigan for several years after my father passed away in 1985.
Please understand that unlike your experience, Marcia, not all nursing homes and health care professionals are wretched. There are caring staff at nursing homes and caring healthcare professionals as well. We all have to be careful not to make sweeping generalizations based on our own personal experiences. I am just as guilty as the next person to do that and I apologize to everyone on here who may have a loved one in a nursing home.
In any case, Marcia, I am in my 60′s now and my husband and I are married for 30 years. He’s an only son and also the only nephew on his mother’s side in a position to help his mother and father and her two sisters and an uncle. We went through a decade of failing relatives, there is light at the end of the tunnel. Not everyone has the financial means to care for loved ones at home. You do the very best you can, Marcia, with what you have to offer your loved ones.
Becky, I did not read your post,nor was did my comment reflect on any other posts. I was venting. Perhaps there are caring people in nursing homes,but the administrators are number crunchers.If the profits aren’t there,then staff gets cut,and it’s the aides that are reduced.Or the quality of care, or medications are reduced,or diapers are cheaper quality. People eat,get their diaper changed & go to bed.Get up,get diaper changed,eat,go back to bed. That’s it.No activities.If they are unruly(i.e.don’t like getting diaper changed) they get medication to subdue them..which just about kills them. This is New York and I’m sure that this problems exists all over the country.I have talked to people in other states that say there are good & bad nursing homes. The states are much too soft on the nursing homes. That’s why people languish in their “golden” years.Ever heard of CRIPA? That’s a federal law that protects people in public facilities,such as prisons. Those are strict rules.Imagine,an inmate having more protection that a frail 90 year old woman. Sad but true
My mother is 86 and in good physical health. I have an 83 year old father that is in worse physical health than my mother, but has his right mind and can still drive and get around-slow but can still manuver. Mother has demetia, which i believe has turned in to alhimerzer(sp?). She is on Aricept,Namenda and Cuminduan (blood thinner) and has been for years. She is usually good in the mornings and knows who we are and can talk somewhat intelligently, but she has the hardest time from 3:00 til bed time. She begs to go “home”., sometimes thinks she has kept the grandchildren who are now grown and she does not know who we are. She will ask “where’s daddy? Does he know i’m here? Is he coming to stay here tonight?” All the time Daddy is sitting right next to her on the couch. All these questions are asked several times from 3 to bedtime. My parents have been married 63 years and have always done EVERYTHING together. My dad never went anywhere without my MoM and now he is the one who is really having a difficult time with her problem. HE does not understand why she is fine – almost completely sane in the mornings and from 3 to bedtime- as he says she’s “Crazy”. They still live in the same house they have lived in for 60 years and my sister and myself go there daily-i get mama up in the morning, feed breakfast to both, give medicine and almost every day i dress mama. We do have someone to come in 2 times a week to stay and help with dressing and watching them from 9-2. My sister comes in afternoon and feeds them supper, medicine and get’s mama ready for bed. This is when she is experiencing the sundown syndrome. I ususally come over at 5:00 from work to see what is going on because we do not want my daddy to get frustrated with her as he most of the time does. We are trying to tell him to go along with her. for example, she’ll say, “where are the babies, i can find them.” I will then say, “Oh their mama came and carried them home a few minutes ago.” This usually satisfies her. Then she may ask, Does Daddy know i’m over here? ” I will say “yes he knows” She will say, “How do you know? ” I will then tell her that i talked with him and he said it was ok for her to be here and that he would be here soon. Again she is satisfied. BUT the problem is that if and when we are not there and she ask the off-the-wall questions, he tells her like it is. He does not pretend with her. He will tell her that there has not been any babies here at all. Some times he gets so agravated that he will finally say to her that she is crazy. In fact he says we are lying to her, which i do not consider myself lying. My parents are good christian people and my daddy does not want to do anything wrong. I am a christain also, but in cases like this i do not consider this a lie. I know she believes what she is saying and to keep her from getting upset and start crying, we need to go along with her. Now sometimes she will get her shoes on and say she is going home and we do have to handle that different. we just cant let her go outside alone. But then we think of something else like “stay here and daddy will be here for you soon.” ANY THING we can do to keep her happy. As most of you have heard the saying, “IF MAMA’S HAPPY THEN EVERYONES HAPPY”. that is more truer today in our life than ever before. Again as some of you are experiencing, i am having trouble believing this is actually happening to our lives. My mother has always be very active and a peoples person. She was the best cook in town and now does not even know how to boil water. She was always very concern about her clean house and dressed very well, Now she is not even aware about any of it. I know i’ve gone on and on, but i just stumbled on this site also and i guess i had to vent. My mom was the glue that held our family together and this is just so hard for our family. She has always begged not to be sent to a rest home and by the help and grace of God we are trying to do all we can not to send her. Of course we do not know what the future holds, but i pray that God in his mercy will take her home before we ever have to make that decision. Maybe that is selfish, but i know that is the way she would want it to be. For all of you who are going thru this nightmare, just take one minute at a time and learn to call out to God for his help–for He is the only one who can. He has been there with us and he will you too if you will just call on Him.
Sorry i’ve gone on and on.
to Diane: No, you are not selfish to wish God calls your loved one home before you have to make the nursing home decision. My husband promised his dad he would take care of his mom and never send her to a nursing home. He also has had medical power of attorney for his brother, who died without making his end of life wishes known. I promised my husband that when the time came I would quit my job (which didn’t pay well, but I loved it) and help him take care of his mom–I quit that job two years ago. I never believed she would rebound after each UTI or pneumonia case as she has. She is 95 and physically is doing great, but sundowners is settling in. Today she told me I was staying with her only because my husband loved me, but he didn’t want me to live with him! Cut to the quick again.
He says, don’t pay any attention to her, etc. but she, in her dementia, is my main social contact every day. I forget there is a sane world out there, and that this too will pass. I see myself existing in her world. I see that my health is affected, my husband’s too. So should I feel guilty that I want my life back? It’s Catch-22. If I do a good job caring for my mother-in-law, then I am bound by honor and love of my husband to continue doing it. It is a self-perpetuating prison.
Diane, you will think we all have freewill and that at any time we can change our situation, but our loved ones do not. They are truly without options. So even though I grump, complain, and lose my temper more often than I ever thought possible, I know I will continue caring for my husband’s mother. When I stop and think about it, I realize I have learned: 1. you can endure more than you think you can; 2. I never want my family to have to give up their lives to care for me; 3. don’t make promises that you may have difficulty keeping!
Diane, it sounds like to me you have the patience of Job. You dad too is doing the best he can–my husband can only take a few hours with his mom before he goes bananas. She doesn’t want me out of her sight, but I have taken to raking leaves A LOT. She can stand at the window and watch me, if she remembers to look out at me, and I can compose my thoughts and energy for the long evening hours. Hang on, you are doing great!
Has anyone ever considered that low sodium may be causing this symptom. Blood sodium level has a cicadian rhythm which starts to drop in the evening. Low blood sodium is known to cause psychotic symptoms. Many elderly are also told to reduce sodium consumption to avoid hypertension. The combination of a low diet of sodium and a circadian drop may be putting them at risk for hyponatremia. If blood pressure is not a problem, a dietary concentration of sodium equal to that of normal blood concentration might fix this problem.
My Mother and her husband have mutiple health problems and are now displaying the first signs of dementia. Mother is getting pretty hateful and won’t do everything her doctors tell her to do. Her husband gets Sundowners everytime he goes into the hospital. They still live at home, and my two younger sisters and I are trying our best to take care of them. Each of us live within a 25 mile radius of their house. Mother has gone down really fast and he is not too far behind. Heaven help us if Mother dies before her husband… Our Daddy died 20 years ago and Mom remarried about 15 years ago. The house is in Mother’s name, and has a provision in their will that Mr. B. can live there, until he dies or has to go into a nursing home. We can probably take care of Mother a little easier than we can him. Does anyone know how three middle-aged women can take care of a grouchy old fellow, who is not our father? I’m retired and have gone back to college. Our middle sister has her husband and daughter at home. Our youngest sister still has a full-time career, and will be taking care of her 11 year old grandson often next year, due to a serious medical proceedure he will have. I am going to check out our Area Counsel on Aging, to see what resources might be available for them and us. I hope the Counsel can give us some help. If I find some good advise, I’ll be happy to pass it on. We may be in the same shape as our loved ones, some day. None of us knows how we will be, before the Lord calls us up. We have to be prepared leagally and spiritualy. Good luck to each of you. 8~) Pat
my mother is 85 yrs old. and has dementia i have had problems with her lately in the evenings,staying awake all hours of the night and packing clothes gathering things getting dressed. and i have just started her on risperidone and i have found out that it works well for claming them down when there aggitated, but alsoif there really tired from lack of sleep it has a reverse reaction. they end up fighthing the sleep with makes it worse. now here it is morning and she’s not wanting to get up. she’s been awake all night.so it’s almost impossible to know what to do at this point.i’m opening for suggestions!
Does anyone know of medication that could help? I really want to help my mom, this is too much to handle and she is miserable!
I am the 24-7 caregiver for my 95 year old mother-in-law. I am sure there are those who will disagree with me, but after two years of seldom getting more than a few hours sleep each night, my husband decided that a time-release sleep aid, Ambien CR should be tried. It works great– she now sleeps 8 hours at night.Sometimes she is incontinent, but I use bed pads and Depends, so it is a small price to pay to get some rest, for both of us. Formerly she would be up at night, roaming, calling her son on the phone at 3 a.m. talking to her imaginary friends, yelling in nightmares, etc. Then she would want to sleep all day–finally we are now on a night-sleep schedule and her daily activities are much more productive since she is rested.
Side effects will no doubt vary, but she only complains of an occasional headache. Since she is on bp meds and lasix etc it is hard to tell what is going on. We tried various things, such as tylenol pm, and xanax previously and the best we could hope for was four hours of calm time.
Her insurance and medicare will not cover Ambien CR, and locally it runs about $175 for 30 pills. We gritted our teeth and paid it, and now we are trying to get authorization from the Dr. to allow the ins. to pay for it. Not easily done, lots of paperwork, and the DR. is already so busy.
Hope this helps. I try to remember that if I get sick or become unable to care for her, that we are really up the creek. Psychologically, I find I am much less stressed and more patient when I have gotten some sleep too–so, for us, Ambien CR works. Good luck.
My Grandma is 83 and she started with signs of dementia about a year ago. Her short term memory is not good, but it seems to worsen at night. She has been on nuemenda for 8 months and it really hasn’t improved at all this disease is really crazy and so inconsistant.
My mom is 86 and was recently diagnosed with a significant Urinary Tract Infection. She was put on a strong anti-biotic and within three days there was a remarkable improvement. She started sleeping through the night, was no longer agitated. She used to constantly try to take her clothes off anytime and anywhere and would not stay in bed at night. She never slept. She was constantly on the move and getting into anything she could get her hands on. All of that is gone. Praise God! We just take one day at a time.
Here’s an update about my Nov. 5 Ambien CR recommendation: after only three weeks of using it, it’s effectiveness has diminished from 8 to 4 or 5 hours or less. My mother-in-law (95) now goes to bed at 9 p.m. after taking the Ambien CR at 8:45. She is usually up again at 2 a.m. It is taking longer and longer to take effect. Initially within 15 minutes she was relaxing and getting drowsey. Now she can be still wide awake after an hour of taking the CR. So I am back at square one, and am getting up 3-4 times a night with her. We keep the safety rails up on both sides of her home hospital bed, but she bangs them with her arms until she is bruised. We have wrapped them with foam pipe insulation. Good and bad nights, live and learn. This sporadic bad sleep has been progressing for two years, and now I cannot get back to sleep after she wakes me up, and I dare not take any kind of sleep aid for fear of not hearing her when she wakes up. I see after googling “Ambien CR tolerance” this tolerance is a common reaction. Anyone had any experience with melatonin as a sleep aid for the elderly?
My mother is 79, and she tends to lose motor skills at night. What I find that worked was putting her on a bedtime schedule. 9:30pm is when I put her to bed, and she will sit up for about 10 minutes then fall asleep. She stays asleep until the health care worker gets her up the next day. This schedule also helps her with bowel movements (which usually occurs at night). Try to alter the schedules before you give your loved ones more medication.
My father just suffered a heart attack and they found a blockage in his main artery and fixed that. He is very strong physically and in great shape but now seems to be exhibiting signs of sundowners. I’m very concerned about this because they weren’t sure how long he had been without oxygen. He’s 72, will this condition be permanent? I’m hoping it isn’t.. I want my father back the way he was before.
Wow…can’t believe there’s so much sundowners and how it affects everyone. My mother 88, got sick in May (cryptococcal meningitis), the drugs they put her on shut her kidneys down and after 2 months she passed away. During this time, my father (90), fell and broke his hip, was in the hospital at the same time as mom (thank goodness they were in the same place, same time)…two weeks later after a very bad experience with a local rehab clinic, I brought them both home. Mom, I thought, would do better with being home and perhaps get stronger…wrong! Dad, did get better but dymensia has been playing a large role in his life….my husband and I moved out of our house and into my parents house to care for my dad and he is getting increasingly worse with keeping me up all night, talking, yelling at people, trying to get out of bed…I find myself up every 20 minutes making sure he’s ok…our doctor prescribed a sleep medication, which worked for about 2 weeks and now…it’s not working AT ALL…I try to talk to him about it when he is lucid during the day and of course, he says, “that can’t be, I’d remember it”…I’m interested in anything that will help dad to get a good nights rest…and me too! I am going to try leaving a light on in his room and perhaps the tv to see if that helps…because like so many of you have said…they sleep great during the day…so, what harm can it do? I’ll keep you posted.
I have a 76 year old father that i’m now taking care of.My Mother past away 12 years ago on my birthday, and there are five of us siblings. Dad had a triple bypass in Sept. of 2007 and was given a shot during surgery that caused him to have a stroke and renal failure. Dad had a complete hip replacement done in 2008 due to a fall. Since the hip replacement the most he has walked was 10 steps with the walker during his therapist. Now he is transcare transport and bound to bed or the wheel chair. He talks about wanting to die all the time, but I just tell him that when the man upstairs is ready then he will take him home. My so called baby sister was p.o.a. and really done dad in. Her and her family moved in with dad to supposingly take care of him. She was in it for the money and what ever she could get.
Her and my brother told dad that they would be there til the end and neither one are there. Dad had a home nurse that would see him once a week at his home. My sister would tell me to let the nurse know he was verbally mean to her and threatened her and the nurse said it was sundowners. I have never experienced any of this and I was there until 3:p.m. or 3:15 at the latest. It really seamed to happen after I was gone. She moved out on October 15, 2009 and I became his power of attorney. It was really hard to take care of two houses, and I had no choice but to move dad in with me and my family after my brother said he was done. Dad has dialysis three times a week so I told dad that he had to move in with me. When Transcare came to pick him up on Saturday I told them directions and that they were going to drop him off had my house and pick him up there from now on.
Since October 17,2009 I have not seen any signs of sundowners or even one cross word from him. When she was taking care of him, dad was seeing people that were not there and still to this day he remembers this. I’ve asked him if he has seen any body and he’s states only the people that lives here. Dad wouldn’t eat her cooking because he stated that he would taste metal and that she couldn’t cook. But since he’s been here he (dad) eats what ever he wants including my cooking.
Good luck to you all on any info on sundowners.
You may contact me at v.ridner@fuse.net
My mom just turned 87. Lived on her own and drove up to a year ago. We sold her house and put her in a beautiful senior apt. where the city senior center was. she hated it, cried everyday, wanted her house back,never liked it, stayed at either my house, or my sister. Got rid of the apt. (diagnosed with vascular dementia) and lived alternating with us onver the past year. We could not leave her alone, would panic and try to call us 9forgeting how to dial) would leave the house, go to a neighbors and ask them to dial us. So sad that THE BEST Mom, helped us with our kids, now 16,13 & 9 and 6, since the day they were born.
Just moved her to an assisted living, thinking it would be better,,,people her own age, (since loud noises bother her. when we close a door she yells “ouch” or any other noise.)
but hard since she doesnt really like “old people”! My sister and I both hairdressers, did her hair and makeup everyday. Now she is having sundowners at her new place. I have had her her at least once a week spend the nite in the past month since she has been there. Last nite my brother got a call, she wanted out! shes told me its dangerous–(had this happen in a hospital last year too)My brother tried to calm her done, tell her its all fine etc. I want to bring her overnite this evening for New Years Eve. brother and sister not so sure i should..might disorient her more and have to get reacclamted to her place? Hate to to be with her for a holiday. Life is so short and precious. Nothing good about getting old. Very sad to see our wonderful,loving parents go through this. I am so sad to see her scared.Mom,we love you! I am soorry this has to happen to you.
My mom is 72 years old. I noticed at Christmas she seemed a little more confused and discussed it with my dad. On December 31, 2009 he took her to a local hospital as she was very weak and talking incoherently. The local hospital transferred her to a bigger hospital where she was admitted. She had an UTI which was treated but they also felt that she has Encephalopy due to a viral infection in the brain. (This appears to be a generic term for a brain disease). However, all of the tests results are coming negative. They are giving her acyclovir for viral infection and antibiotics for the UTI. The MRI and CT scans have shown no stroke and normal dementia for her age. She is currently very confused. Sometimes she seems coherent and other times she has no idea where she is. At night in the hospital she is showing signs of Sunddowners. She has been in other patients rooms and has tried to get on the elevator to leave. Most recently she fell in her room and may have broken her wrist. They have put her on Risperadol and Trazadone to try to get her to sleep at night. This has not worked. She has been denied rehab due to her behaviors and confustion. The doctor’s cannot tell me what has caused this and if she will ever get better. Please give me some guidance. Should I take her somewhere else for a second opinion? My dad is 75 but very healthy and this is killing him. They have been married 53 years and sometimes she says very mean and hateful things to him. She should be released from the hospital this week. What are my options?
If your dad feels he can no longer take care of her, that is all you have to tell the hospital and a social worker will come in and make a plan for her care. If you refuse to take her home, as you have not got appropriete care in place, they can not throw her out the door. Ask for a social worker, ask for an alzheimers evaluation by senior services, they have a like score card thing, they can tell what she will need and might have answers for you. Your dad will not be able to take care of her alone, please set up a team, to help with her. I did some work with the alliance for the mentally ill, they too might have some answers in your area. Each state has different laws and services availible. The hospital will have a team meeting before she is to be released , ask the hospital to enclude a family member on the team. That way you know what the plan is and can be part of it. Let them no if you dont have the safety tools to deal with your mom’s wondering. Dementia and alzheimers can be dangerous, if you don’ t have the safety area’s set up. I have a baby monitoring system set up in my mother in laws bedroom , so i can view her on the t.v. I can leave it on all night in my room, so i can see and hear her. Many times in older couples it is the caregiver who dies first, because of the stress of caring for the sick one. Please give you dad the help he will need. Ask the social worker in the hospital, what services she qualifies for now, also , ask hospice to come give and evaluation, they have services not just for the imediate passing stage, and are very well trained in demintia ( i dont spell great). good luck and God bless. lynda
Hi Kandy
I was wondering if you have any more information on your mom. My grandmother is showing the same signs. But I believe her symptoms are worse. She is throwing things, hitting people, being really rude, and refuses to listen to anyone. She fell and broke her hip last week, had surgey this week and was doing really well. They transferred her to a rehab hospital and only a few hours later they transported her back to the hospital because she was insisting that the doctor told her she could go home. When back at the hospital they run some test, and found she has a UTI. But they could not find any signs of a stroke. Since back at the hospital like I said is acting like a child. The doctors and nurses are not doing anything. They are not checking her vitals, and have told us (the family) that someone has to stay at the hospital with her. Please if you have any new information I would greatly appreciate it.
THank you
Marie
Hi,
My advice is to call a homehealthcare service in the city where you live, They have wonderful trained people to help with the care of your mom And she can stay home !
Which is what i do for a living…..Also i’d advise you to take mom to a neurologist. that
is the plan this week for the 93 yr old woman that i’m currently taking care of. They are
best in finding answers about Dementia, sundowners etc…The lady i stay with 24/7 has been diagnosed with sundowners and will be tested for dementia soon her signs are more and more intense ! You may need a team of help.
lack of understanding made it difficult for my siblings and I to accept the evidence that has been in front of us. My father has been living alone at 80. He has shown signs of forgetfullnes (not extreme very slight) but he becomes fixated with the furnace in the winter. He will not let it rest he writes down when it goes on/off length of time running and calls fire department, gas company, furnace repair and family mostly in the evening 2A.M or later. he is up all night walking around checking on things always using flashlights (sundowners???) We were trying to get him to agree to assisted living care with little to no success. I finally had to take him to the hospital for an unrelated incident and his mental state has gone downhill rapidly like in 24 – 36 hours. Prior to this the only meds he has taken is lisinopril 40mg. Doctor as him on an anti depresant now, yet he now seems more depressed. Thinking we would have been better off keeping him home in familiar surrounding and trying to take care of him there. In my heart I think that would be best for him but my head is telling me otherwise. I feel like we are losing him (mentally) very quickly and don’t know how to help him.
My Dad was getting his days and nights confused, sometimes calling me in the middle of the night wonderig where I was and why wasn’t I there to pick him up? He once took a cab to Walmart at 2.00 am and another time took a cab to his doctor’s appointment sometime in the middle of the night. The fact that it was dark outside did not seem to make any bells go off. He got angry that the store or the doctor’s office was closed. Later, after he’d gone into extended care we found out he was always up all night wandering around (the neighbour told us he could see him in there with all the lights blazing). He painted everything in his basement (tools etc) wierd colours etc with any paint he could find. But for most of that time when we took him to see the family doctor he would pass the mini-mental health test.
to Kevin–we also felt it was the best thing to kepp my 95-year old mother-in-law at home, and we did since her husbaqnd died in 2000. For the first five years, we got along OK. This last year has been a real trial and none of us get a respite form the strain of (1) her not knowing where she is;
(2)her not remembering where the toilet is; (3) being able to respond to simple requests, such as “take out your teeth”. Still, as I look back over the last ten years, she had five very good years with us, four years in decline, and 2009 saw many UTI’s, bouts with pneumonia, and dehydration, and the dark cloud of sundowners every day at 4p.m. She seems very unhappy now all day and family relationships are deteriorating, and for the first time I can see why people put their loved ones in nursing homes. “She doesn’t know where she is anyway” we tell ourselves. So perhaps this is the beginning of the last stage of at-home family care–don’t really know since this is the first time we are experiencing it. It’s hardest on my husband, who can see the sharp decline, and he feels helpless. I finally today gave up for the millionth time trying to explain, “This is where you live, you don’t have to go anywhere, your brothers and sisters are all gone except for one who is ill.” I cannot pull her back to reality. She has gone where all old frail minds go–where we ALL will go probably. So, even though I sense you are feeling guilty about your dad–don’t. He’s in his own world regardless, and we cannot join him. We can just observe and see that our loved ones are really already gone. How else could we bear to part with them? Good luck to you. (Sorry I couldn’t proof the previous note–hit the wrong button!)
Kevin, I feel like you do that it is best to keep them in familiar surrounding if at all possible. Did the hospital rule out other possibilities that interfered with his mental status deterioration such as infections, med side effects,thyroid problems, etc?
Please everyone, be careful of what psychotropic-mood altering medications and others that get prescribed for your elderly loved ones. Many can cause increased behaviors, falls and other side effects.
Just giving diuretics ( water pill) for congestive heart failure can cause electrolyte imbalances that send people into symptoms of dementia.
My Mom is 92 and until recently had been living alone in her home with some home health services. On Thanksgiving she was very lethargic and had cellulitis in her leg. She has been hospitalized 4 times since then with a series of increased confusion episodes due to the infection process, low hemoglobin and low sodium and low potassium. Any of these can mimic dementia. She also has symptoms that are similar to Sundowner syndrome, but it occurs at various times of the day intermittently so that is not likely consistent with Sundowner, though maybe.
Soon after the electrolytes ( potassium and sodium ) were stabilized she had no Sundowner symptoms for many days, until her potassium went low again due to use of water pill and no potassium replacment prescribed. What is interesting is she voices her episodes of “confusion”,saying she just wants the confusion to go away. She will tell us , I am slipping out again.
Please advocate for your elderly…..
One of the ER docs wanted to place a urinary catheter in her at one of her admissions.
She is normally totally continent! A catheter is the worst source of bladder infections which can also cause dementia symptoms. Needless to say I said no to the catheter and she remains continent and is toileted with assist during her hospitalizations.
Each of the elderly needs a strong advocate and I feel sorry for the ones who have no one looking out for them, as they likely get lost in the long term care or hospital systems.
Thanks for listening. It is a roller coaster. Sandi
I work 7pm to 7am at an Assisted Living Facility in Md. We have several residents that suffer from sundowners. We have one that is extremely violent, not towards herself, but to us. She will destroy her room then scream that we were in there stealing her things and look what we did. She has gone as far as to baricade her room with chairs and her desk to keep us out, which means we can not do bed checks or rounds every hour. She slaps, kicks and punches anyone who walks by her, and has hit one of the girls over the head with a glassed picture. She refuses to take any medication that is prescribed for her. We are always polite and talk to her calmly and clearly at all times. All i’ve been told by my bosses is that i had classes to be able to deal with this. I tell them, come in and work my shift one night, then tell me the best way to deal. Of course we all know, that will never happen!
sandy, i dont know what will work but you can try many things.. Say, I am here to help you, your family sent me, what do you need me to do? How can i help you, if you get scared you call for me, i will help you..
Maybe it will help maybe not, sometimes i have to play the game, see what works. I took granny out for a walk in the hall, we walked till she was so tired, then i got her back in the front room and said, wow, it’s good to be home isn’t it? she said yes.. also,,, she is not on the best meds, she doesn’t feel good inside , that is what you have to remember, if she looks like this on the outside, how bad must she feel on the inside. If she has family, they need to review her meds, and if you see a doctor, tell him how bad she seems to feel. You are her only voice, go to a doctor. You will be good at your job, because you cared enough to look this up…. I can tell God has his eyes on you…. be her voice..
My father has been diagnosed with Multiple Myeloma (Bone Morrow Cancer) with this comes confusion and exhaustion. He had a confused episode that lasted more than 30 minutes, but most of the time he is lucid, just can’t remember small things. Great memories of the past, but not current things. A nuerologist stated he had “a sundowners episode” Is this the beginning of Alzheimers and is it worth fighting this Cancer. He is 77 years old. Other symptoms….Can’t sleep, no energy, no appetite, loss of weight, depression, constipation, weak bones, (now on top of all this, daughter has MS, and Sister/Law has breast cancer) I need some answers
John or anybody else out there. Where can I find that a Coreg side effect is dementia? I do not see it listed on
the manufacturer’s website as John said in his post.
Elaine
Light is a friend to someone who suffers sundowners. Music is another friend. Be patient. Try and get sleep and God Bless us all. This is a battle no child should have to go through
My mother also is suffering from Sundown Syndrome. She is 87 and recently broke her hip. She is in a nursing home for rehab, which isn’t going well. At the nursing home her agitation starts around 7:00. Mom is given a sleeping pill. By 1 AM she is up, agitated and really angry. The nurses, who are great, put her in a chair and keep her by the nurses station where she dozes off and on till 7AM. She then goes back to bed, but is so exhausted she sleeps off and on all day. Too exhausted for physical therapy. Tomorrow I am bringing a clock radio that plays soothing sounds and has a light that gets dimmer as the hour goes on. I will let everyone know if this works.
Nancy
An update on Mom.
For 2 months Mom slowly went down hill. Se got pneumonia late March and passed away last Friday. She spent the last 2 weeks resting comfortable and sleeping 20 hours a day. Hospice was a Godsend, and helped us all to understand the process that my Mother went through. Everything shutting down little by little. She felt no pain, and even knew we were in the room as her eyes would not open but when I told her I love you her eyebrows would arch a little. No answers for sundowners. But the nurses said the clock radio with soothing sounds calmed her and her room mate for a time.
Patience, love , understand and more patience. When you can not take care of your loved ones needs at home anymore, find a skilled facility. Make daily visits at different times. Insist your loved one is treated with dignity till the very end. Make friends with the nurses and therapist. (Bring them cookies). Best of luck to all. Mom is finally at peace.
God Bless
Nancy
Taking care of someone who has sundowner’s or any form of dementia is a thankless job, because you usually don’t see that you are making any progress. You do the best you can to follow common sense and the doctor’s orders, but there is always the obstacle of what is going on in your loved one’s mind which prevents your care from reaching them. For example, my mother-in-law thinks the cannula from her oxygen is choking her if it touches her neck. We put it on her from behind and over the ears so that it nowhere touches her neck. She will not be convinced, and she will not leave it on. We also know from her experience in the hospital she will not wear an over-the-face oxygen mask.
So she is fighting to take off the very thing that will help her feel less short of breath–which she frequently complains of. It is difficult for me, the caregiver, to not feel a sense of frustration and anxiety that I cannot reach her, and I don’t know how to accept that in some instances THERE IS NOTHING I CAN DO to fix this. She will not, CANNOT, listen to reason, medical explanations, or even pleadings (“This is something you can do to help your own health–you are lucky there IS SOMETHING you can do to help yourself,” etc., etc.,)
Tomorrow morning she will not remember anything that happens tonight. She will feel tired and her congestive heart failure drags her overall condition down. So here it is 3 a.m. and I am all revved up from arguing with her, and her sleep aid has kicked in and she is finally sleeping–but I know the oxygen will not stay on, as soon as she can take it off, she will. She will also take off her Depends if she can, and pour her drinking water in the trash and then tell me she drank it. What I constantly pray for is the serenity to accept the things I cannot change–the loss of her mind–and the wisdom to know WHEN I cannot change the situation.
My sister-in-law says a refusal to do something, like drinking enough liquids, is my mother-in-law’s way of shutting down (she is 95), that she and her body are more accepting of her death than I am. And (this is the hard part)that I should just let her go. She says I should accept that this is not in my hands any longer; but I continue to fight it, and write on this website, and ultimately feel a little better that I can express my sense of hopelessness in this anonymous forum. Whoever you are reading this, if you waded through it this far, thanks for reading. Pray for all us caregivers who sometimes feel we would rather jump off a cliff than do this another day–yet we do it another day…
Brenda
My heart goes out to you, as I understand what you are going through. I came across this forum tonight as I lay awake praying my grandmother would go back to sleep. Her dementia has been coming on midly for a few years and in the past three weeks has went to severe and sundowners has kicked in to boot. I believe this is the hardest situation most of us will ever deal with. I believe we each have to give the care we deam best and in the end know that we each did everything we could do for our loved one. Thank ypu for sharing your post as it has let me know I am not alone this late night/early moring. I too often repeat the serenty (sp) as I lay awake praying for an hour of sleep before its time to get up and go to work.
Wow, your story is very touching. I totally feel for you. You have explained everything so expressively. I am definitely going to pray for you and all caregivers. It’s killing me that I’m losing my mom this way too. I think my mom is at the beginning stages of this “sundowners”. My mom had a stroke 9 years ago which killed her kidneys and has been on dialysis for eight years. She just started doing some weird things in the last two weeks. The waking up at night is definitely one of them. She wants to take a shower and get ready even though it’s 1:30 in the morning. She also seems to do physical things that normally she cannot do. She walked outside (opened a heavy sliding glass door and walked out to the back yard and fell down. We were looking for her all over the house and couldn’t find her and finally went out to the back yard and saw her sitting on the grass asking for someone to help her. I just couldn’t believe it! All I kept saying was how did she get out there?
mona
i just found out tonite my 68 yr old mother has sundowners….onset of dementia due to poor dialysis. She gets off early most times.
i am devastated. i work in a retirement community and have seen up close and personal the effects this disease has on any of our seniors.
im so sick about it….we have been tryin so hard ot get h er back to where she used to be….MOM….i fear that she is gone…and i dont know how to handle it…sigh…
My mom is able to go to an adult day care (thank God for this relief) and I go visit her at lunch, but I’m finding out more and more lots of things go on with dialysis. My mom has been saying lately that she’ll just stay over night at dialysis because she will be safer because my brother hasn’t been coming to help her during the night (she lives with my brother and he has her on a baby monitor at night so she’s not out and about getting up and causing danger to herself). Some nights are good where she sleeps all night, others not so good and she’s calling for him every 5 minutes. My brother has a one year old baby and he’s exhausted with both of them.
It’s interesting what you say about dementia and the dialysis. I’ve been reading alot of these stories here on this website and it’s just amazing how many people are taking care of their parents or grandparents. What I’ve done lately when my mom starts talking “crazy” I go along with whatever she says and try and keep her satisfied with the answer she wants to hear. At first, I was getting frustrated and fighting with her about these games I thought she was playing with me, now I know it’s not her fault and she doesn’t know what’s going on with her mind. I am just thankful for the good days and cherish when she is sharp on those days and we walk and talk and are happy together. I love her.
OMG Brenda, I’m just beginning to walk your walk. Thanks for the insight and the validation that I’m not insane. I hope I’m an able caregiver and patient advocate. This came on more suddenly and intensely than I’d ever imagined. Prayers?–of course!!
I came on this site tonight because my 87 year mother has been showing signs of sundowners. She had a compression fracture in her back a month ago and it has been a nightmare since. She was diagnosed with Alz… last year and was in the hospital for about nine days….she threw fits and pulled her ivs out and took the alarm off of her. she got up in the middle of the night and yelled at the nurses to shut up that was talking in the hallway. I could not believe she had it then…. until then she had stayed in her home and maintained all of her household chores and even did her own yardwork…she stayed in the nursing home for twenty days and they dismissed her and made her promise she would continue taking her medication and let her go home with home health care. she stopped taking her meds one month later. i reported to her nurse that she had stopped them. she went to see her and called me back and said there was nothing we could do if she refused to take them.
now to current date….. we took her to the hospital because of the excruciating back pain she was having. To make a long story short she was so horrible while we waited for five days(she had been taking aspirin to thin her blood) to let the blood thicken back up before she could have surgery. My brother stayed with her from eight in the am until two pm…..I stayed from two pm until eight pm. We are both in our sixtys and get very tired so we could not stay all night…she gave the nurses so much trouble after we left ..she pulled her ivs out four times ….she slapped them and
crawled out of the bed all of the time. she was not supposed to get out of bed until she had the surgery. … she had the surgery finally and it was sucessful…. she has been on a merry go round of moods since she was in the hospital. the nursing home has said sh e has the sundowners and gets so bad at night….she doesn’t remember being in the hospital and she doesn’t remember having surgery. Her twenty days is going to be up this tuesday with medicare and she is saying she wants to go home. i dont know what to say to her but i know i cnat bring her here to care for her in my home, and i cant let here go back to hers….it is tearing my heart out. She has never been a very nice person and looks as if she is going to get worse….I just needed to express myself tonight… it is such a difficult place and time in our lives
Not giving up and remembering to be humble is my everyday prayer. My dad is suffering from depression which began a year ago after having double bypass surgery. I finally had to have him admitted at a phychiatric hospital. So far no response, he just wants to lay in the bed, and complain about not sleeping.He is not interested in anything. Now it seems that he has some form of dementia and sundowners. I have heard that the depression after a double bypass is more common than not. My mother died 10 years ago and so dad is all alone. I try to do for him like she would if she could. My sister thinks that we just may have to face reality and put him a nursing home. I am hoping the doctors will not give up on him. He is only 72 and is surely to young to be admitted to nursing care permanently. I am not sure that I agree about the dementia or sundowners, but I do know that he does not have any quality of life with this depression. He doesn’t want to participate in traditional therapy and therefore we continue to try different medications to bring him out of his depression.
Reading many of these articles made me realize just how many elderly people and caregivers are affected by these diseases or symptoms. Please just know that you are not alone and my best advice is to take one day at a time. I am still hoping for a miracle and something will finally work on my dad. I have been frustrated and disheartened more than I can count. I know that I have to deal with it whatever happens and that’s a fact. So I need to just suck it up and be the grownup and take care of my dad.
Just want everyone to know that your not alone. God is always watching and has a purpose for our lives, including our loved ones. Love, hope, and faith are words to live by.
Thank you Brenda for your post. I’m sure you are doing a good job. So, hang in there. I can identify with what you are going through.
I’m writing this at 1:45 AM as I watch over my father in his hospital room.
My father is 77 years old and has myelodysplastic syndrome (bone marrow is not properly producing blood cells) and he also has failed kidneys (ESRD). He has been on dialysis for a total of 2 weeks so far.
He appears to be afflicted with a combination of “dialysis dementia” as well as sundowners syndrome. All of this is due to his body trying to adapt to dialysis. I believe that is the correlation because it all started the very first night he had dialysis.
So, he is tormented and unstable at night. Then, he tries to sleep during the day and is grouchy towards family, nurses, and physical therapists who try to help him in the daytime. I’m trying my best to help him reset his internal clock with respect to daytime/night by getting him more exposure to sunlight during the day.
This is approximately my father’s 4th week in the hospital. So, the nurses said he might also be suffering from a bit of “hospital psychosis” from being in a room/bed for so much time.
He also has nearly zero appetite. This is so concerning to me because I don’t know how his body/brain will be able to adapt and possibly rejuvenate at all if he has so little nutrition.
I wish I could stay up with my father everyday and watch him. But, the reality is that I have trouble working during the day when I stay up with him at night.
I’ll stick with it as much as possible, even if I can only stay awake until midnight some days, because I love him and I know he would have done the same for me.
Everyone out there who is in a similar situation, my thoughts and prayers go out to you and your loved one.
Best Regards,
James
My 85 year old mother had an aortic valve replacement and double bi-pass Friday, Jan. 29, 2009. It was horrific surgery and I’m wondering what we were thinking allowing her to got through this. She did not begin to wake up until Monday. With slurred speech, they said she had a stroke but later decided she didn’t. Today, Sat., Feb. 6 she is now in acute rehab. She seems to be talking better but now is not making sense. The nurse suggested ‘sundowners’…Tonight she was angry and made nasty comments to the nurse. She thought I was her sister and they told me after I left last night she tried to get out of her bed and hurt herself. My mother was mentally healthy until this surgery. Has anyone seen this? Based on what I’ve read, could this be a vit. d deficiency?? Please excuse the misspelled words…my spellcheck doesn’t work?? God bless each of you.
Kathy, my dad went in for lower back surgery in fall 2008, and came out of the hospital having had a stroke due to the coagulating agents or whatever. He was in rehab a couple weeks and that is when the sundowners kicked in. He did the same thing your mom did, being nasty, aggressive, taking off his clothes, trying to leave, threatening, losing touch with reality. As you have read from all the other comments, we are not alone. Now that my dad’s Parkinson’s is progressing more rapidly, his dementia is too, so lately the sundowner’s has been back with a vengeance, even though he’s living in his own home with a full time caregiver. He’s impossible for one person to deal with, so now we need to get him placed into a home asap. Only God can handle stuff like this for us, as we are way beyond equipped to do this alone. Good luck everyone.
Hi Kathy.
I will start off by saying that I am not a clinician and am not giving any advice with the following comment. I’m just sharing my thoughts from reading your post.
It seems too soon for your mother to be suffering from sundowners syndrome. From what I’ve heard and read, it usually kicks in after an extended number of days in the hospital.
Secondly, when my father had bypass surgery several years ago, he too wasn’t quite right mentally for awhile. But, it appeared to be from the fact that his body was trying to recover from the very aggressive surgery he had just been subjected to.
Major surgery, reduced nutrition, and reduced sleep all in conjunction with increased medications can easily cause confusion and irritability in even a young person. So, an older patient would be even more succeptible.
Regards,
James
Hello Kathy, I’m also Kathy so I am just signing with “K.” so that people know the difference…
Early December 2009, my 91 y.o. dad had pneumonia and was admitted to the hospital.
Previous to that he was having some episodes of dementia. He would do odd things, started swearing a lot when people aren’t around which he never really did before, complained a lot that “something’s not right, I don’t feel well” but was unable to tell anyone what was wrong. We would note all his vitals, check his pulse, respiration, temperature and he would all be in normal range so we wouldn’t call the ambulance but noted that there may still be something wrong, but not enough to call an ambulance. He also had a slow growing prostrate cancer and had been diagnosed with severe osteoporosis.
This was going on for a couple of months before he collapsed and was picked up by ambulance to go to Emergency. He was diagnosed with emphysema and pulmonary hypertension while in ER, and had a sudden loss of blood pressure which precipitated him being put into Critical Care.
The hospital building had been opened for only two weeks and was built right next to the old hospital facility.
The first two nights in the Critical Care unit, he wasn’t showing that much abberrant behaviour from before, but would be up all night playing on an electronic poker game. As he improved he was sent to a brand new Telemetry wing. The rest of the week was literally a nightmare for the family. Dad flipped out, would be verbally abusive and agitated all night. He was moved out of a private room, to another private room closer to the nurse station, and finally to a shared room with a 24/7 attendent to ensure that he was monitored 100% of the time because of his behaviour. He was put into restraints twice, and his arms got ripped to shreds because of his old skin texture and by an attendant getting a little too agressive in trying to keep him in his bed. My brother in law who lives with my sis and my parents was flipping out and wanting to put him in a nursing home right away.
It was interesting to note from previous posts about the connection with military service and post traumatic stress syndrome. The nurses would tell us that he was reliving a lot of WWII during the times he was in restraints.
The doctors told us about the Sundowners syndrome and assured us that he would be back to normal once he’s back home (for whatever’s that’s worth!) Sure enough, when he got back home he did get better and we’ve all been pitching in to relieve my sister and brother in law and trying to keep dad at home. At this time, nursing home would probably be the last thing that he will be able to handle which was confirmed by the social worker.
He’s on risperidone (his “funny” pill), Advair and Combivent for his emphysema, Flomax (I believe for his prostrate) as well as Fosomax and Testosterone shot for his osteoporosis. We did notice an improvement in his behaviour/mood with the risperidone, but that still hasn’t made him sleep normal hours. My mom ended up sleeping in the study which is the room that my dad would go too during his night rambles which started really to disturb my brother in laws sleep. This stopped my dad from going in that room, so we got rid of their king bed and got twin beds and put the computer into their bedroom so he stays up all night and stares at the bridge game on the screen.
So things are simmering down now, and we are looking into a day program for him. He will be in pulmonary therapy soon too so hopefully all the day time activities whill suppress his night activities…..
K.
My mother was recently told she has sundowner syndrome, This morning around 3:00 am she woke up scared that something bad was going to happen to her and she wanted me to call my brother, and sister’s and take her to the hospital. I’m not sure when this first started but I’m worried about her , she fears that she is going to die and now she wont go to sleep. If someone out there is going to the same thing please tell be what I can do to help her. Thank you to anyone who responds. God bless
We were without electric for ten days here, and sundowners took over. After five days we sent my mother-in-law to a hospice respite facility that is supposed to give caregivers a break. When I picked her up today after the electric came back on at 4 am last morning, she didn’t know me, did not know she was going home, didn’t want me out of her sight, woke me up this a m with “help me! help me”–but nothing was wrong. This is how her fearfulness is manifesting itself, and this is new for us. She has almost no cognitive perception beyond what is happening in her mind. She cannot help herself, and I see the five respite days apparently made her worse–since we were snowbound we really didn’t get a break either. So one more option that I thought was a Godsend didn’t pan out. I see she wouldn’t survive a month in a nursing home, and that keeping her here at home is the only humane thing to do. But I honestly hate it, and whatever love I once felt for my mother-in-law is gone. I feel trapped, as she is trapped. I feel guilty that I lose my temper, and she doesn’t hold it against me the next day–because she cannot remember the hurtful things she says to me, and then I let loose with a few choice words myself. It does not relieve the stress though. Now, you’re thinking, reader, “this lady is going nuts” and you would be right. What IS the purpose of all this madness? I have been her primary caregiver for YEARS and I have had it. I have prayed and cursed and loathed her and myself and the next day…it all repeats itself. What is the goal??? I have lost sight of it. I can no longer see any good I am doing. My husband is not much help–it’s all too painful to see how his mom is gone and he now has to witness my misery too. I know I’m being selfish, but tonight I just don’t care! If it weren’t for this website I would just get in my car and drive and never look back.
Dear Brenda,
My mother is 94 and I have been careing for her for 19 mos. The problem we all have is the way our towns and cities are organized with us not knowing(or not wanting to know!) who the hell our neighbors are and all of our friends are spread out all over creation. So, many of us are doing this job with little or no help. You are lucky your husband is at least around, sometimes. I think most of us understand that we are trying to preserve our humanity as we do this hardest of all jobs. The temptation is to feel sorry for ourselves in the sense that no one “really” understands what we are going through. Well, no one really understands anything we do and what it may cost us in the long run. Raising kids, caregiving, it is all the same. Beware any husband or career woman who slights the efforts of the stay at home spouse. “Worship me, I’m the one bringing home the bacon!” A person could get hurt if a person were careless in that way.
I have started to think of myself as already dead, like a soldier in war. That way survival comes as a bit of a surprise, like UPS showing up with an unexpected but delightful parcel from a secret admirer, or something like that. I think it is especially important for women to get together and talk about their lives and problems. If you are a woman who has not had a group of friends over the years I suggest you start now if at all possible, even if it is only on the telephone .Ladies from some churches are very good at giving this kind of support without placing you under any obligation.
You ask what is the purpose of it all. What is the purpose of life itself? Probably nothing more than to reproduce. And to stay human doing it. I sure do understand that you have been walking a thin line but the point is that you are succeeding! And you are learning just how thin that line is that separates us from…well, you understand, I feel certain.
Actually, I do get in the car and race up and down the freeway at night sometimes, just to smell the night air and feel a little bit free. So what if the house is on fire when I get back! You can’t have everything!
Resisting the situation I am in is what causes the most anguish. Accepting it without reservations is best. I don’t-have-to-do-it-if-I-don’t-want-to is the truth of the matter. Being controlled by the person being cared for is beside the point. I DO WHAT I CAN AND WANT TO DO AND THAT IS THAT.
Brenda – I know what you mean about wanting to just get in your car and drive away and not look back. My 90 mom was diagnosed with Alzheimers about 3 years ago and I am her primary caregiver. She was hospitalized last week with extreme weakness and they think she had a mini-stroke. This would be her second stroke. Last night in the hospital she had a bout of sundowners. Wanting to pull out tubes, and go home – she told me we both could climb out the window and get out that way. The doctor told the nurses to give her Ativan to calm her down and it took two hours for her to get calm. In the meantime, the only way I could keep her in bed was to crawl into bed with her and put my legs on top of hers so she couldn’t move around. This latest hospitalization and bout with sundowners is on top of all of the other all consuming things involved with her care. She has diabetes which is difficult to control, stents in her heart, high chloesterol, takes about 17 pills per day and I’m pretty exhausted – I’m not sure how much longer I am going to be able to go on.
READING ALL THE INFO FROM YOU GUYS HELP SHED THE LIGHT on my 74 yo husband who will be find all day, but around 4 pm his mind tell him to get into his car and drive, sees people that are not in the house, and forget who I am. He been diagnosed with dementia for 2.5 years, taking aricept and zoloft. Also klonopin for restless sleep and night terror. I am grateful that so far he sleeps well thru the night. Brenda I am so sorry that you are having to go thru this and don’t seem like any relief in sight. I pray God will give you more strenght and endurance. Be sure to take care of you, too. Hang in there! It makes me realize what may happen to our life in years to come. God Bless.
my 82 year old dad had his first episode of “sundowners” lastnight. He is terminally ill with cancer and lives with me(daughter) and my 9 year old daughter.
It was very strange, he had a bad day where his best friend for like 50 years had visited and he couldn’t seem to hold a conversation with him. He says that he stumbled over his words alot and felt terrible about it.
At about 8:30 p.m. he started asking really jumbled questions that didn’t make any sense. He was very persistent in asking things that I didn’t know how to answer because he was really confusing me.( His Dr.told me at our last visit about a month ago that she suspected he had an early form of dementia)
Finally I called the hospice nurse because he got paranoid that I was giving him the wrong medication and acted like I was tricking him into something.
they had me give him 0.25 mg of haldol, a very small dose. He slept all through the night for 12 hours and woke up fine today and had no symptoms tonight.
Wow was I relieved. I know that it will come back though….
this medication when given in very small doses can be beneficial to patients and does not have the same side effects as benzodiazepines like xanax and ativan. Those meds just make things worse with my experience.
Good luck to all.
Thanks for your kind words, Barbara. After much gut-wrenching thought, we have decided to put my 95 yo mother-in-law in a nursing home for a while. We hope we are doing the right thing, but we can no longer give her happiness or contentment here. She is as someone leaving a sunlit field and entering a dark woods of fearful sounds, like a baby constantly crying for help, she goes into sundowners at 2 in the afternoon, “I’d better get ready before dark.” She, even in her confusion, knows what is coming, and sees strangers in her house, calls to us for help, and wonders why no one will take her to safety? Why won’t we help her, she wonders?
We have only initiated the paperwork, and still have days ahead of guilt. Our hospice counselor gave me a comforting perspective on the situation I had never considered: after five days of hospice trying to give respite care for my mother-in-law, they were drained. The counselor said, “We are a full staff of professionally-trained medical workers. You and your husband have been doing this for YEARS, and you have only just now gotten tired. We only did it five days!” She told us we have been doing a great job of caring for her, and that the decision to try a nursing home does not mean we are putting her in prison, only that we are handing the bulk of her care over to professionals. So wish her luck in this new phase of her life. We bottomed out last week, and pray she will have some kind of peace and security, which is all we ever wanted to give her. All of you out there who are every day watching your loved one enter the dark woods and know too well you cannot go in there with them, have courage.
Be strong when you can, forgive yourself when you can’t, and let go when you must.
Brenda,
I’m a newbie to this site and have been fascinated for the last 2 hours by all the comments, especially yours. I’m so sorry for the final exasperation you’ve experienced after so many years of attempted normalcy. As I said before, I’m just beginning to recognize the total helplessness and frustration of the situation and it’s maddening to be so out of control! Good to know there are so many others sharing the frustration and can offer help. May God walk with all of us.
Janet
I’m taking care of my 95 year-old grandmother who, until only months ago, was fully independent and living alone. She had momentary memory lapses and her eyesight was severely impaired [macular degeneration] but, having lived in her home for 60 years knew it like the back of her hand. She fell and cut her leg and hid the wound from everyone until it got horribly infected. After I discovered it she went into the hospital and, later, a skilled nursing facility. She hasn’t been the same since. She sleeps a few hours at a time but fitfully. She’s anxious and fretful. Sometimes she thinks I’m her husband, other times her brother-in-law. I try explaining thing to her but it’s useless. They just aren’t retained for more than a few minutes. I’m very lucky in that she’s always very pleasant and appreciative. You have to know her well to tell that she’s angry about something. My hope is to do what I can to prevent illness or injury from taking her before she dies peacefully in her sleep. But I know that’s not up to me.
I’ve spent several hours here reading about sundowners after “Grandmother Ruth” got up at 9:00pm for breakfast and I knew I’d be getting another night of no sleep and being asked a hundred times why it’s so dark.
Thanks Brenda. Your honesty and compassion are encouraging. You did what you could— and then some. We’re all trying to make our way through this life with as much dignity as we can muster. Sometimes that means helping someone else hold onto theirs.
I’ve read some of the above comments, and, although I can certainly relate to everyone’s concern (my father died at 85 after 3 strokes, my grandmother lived to 101 and now my mother-in-law has been diagnosed of Sundowner’s Syndrome), part of me says:
30 years ago, it was normal for old folks to becomed SENILE! It was, for some, not all, a normal progression to DEATH. Yes, folks, if we live long enough, some of us will develop mental inadequacies. But today, we all want a reason, a name, and a magic pill to correct the condition. Wake up, folks. Death is knocking on the door, and this is just a precursor.
To comment on Maria,
We as family of people who has be diagnossed with sundowners or dementia need people with postive feedback we know that oneday our love one’s will die but this is a outlet for us to talk with one another and share our experiences and help each other.
In light of a book I recently read, I thought I would recommend it here in reference to Sundowners Syndrome. It’s called “When Pigs Move In” by Don Dickerman. He is a Christian—and this book talks very straight about the ministry God gave him as he was dealing and ministering to mostly prison inmates. He found so many of them (even the ones who had become Christians) still had certain torments—that they just couldn’t get a handle on—had demonic attachments. It was simply a matter of casting them out in Jesus name. Many in our culture today—will think this is way too spooky and would not happen in the USA—but I encourage you to read the book. He is very down to earth. If any of you read the Bible—he gives many references to this being a necessary part of our walk as Christians. So—–he also mentions many other areas that he sees these problems—and some are with people with emotional disturbances —such as Sundowners Syndrome or panic attacks or many mental illnesses. One typical comment people say they feel—is that they feel tormented. Even Pastors can have these attachments—which one I read about had gotten an attachment through a visit to a foreign country (where vodoo was commonly practiced) on a mission trip. Or—these can get passed down from previous generations, or through traumas….so many different avenues. My mother has some form of dementia—–which has been incredibly painful because of her seeming to be normal one minute—then go into a rage with all of these crazy accusations against my husband and me. Since reading the book—I have been praying differently for her—and have seen an improvement! Things are not totally solved—but improvements. I am not a professional—but know with all that I am dealing with with her—I am willing to look into whatever may help. Perhaps this book may be of help to you.(I ordered mine from Amazon)
God Bless and I hope your loved ones find some help.
As i finished reading all these posts, all of this I can relate to as my mom suffers too. Its nice to know that we live in a country that allows us to communicate and realize we are not alone in all this. God bless all of us.
to Maria Nekludoff: Of course, as you say, “death is knocking”, but this does not mean we have to let our loved one endure the torment of sundowner’s if there is something, ANYTHING, we can do to lessen their discomfort for the time they are with us. The same God who makes people senile also gives caregivers the intelligence and strength to search for solutions. We may fail, because senility is a natural part of aging, but we will not fail because we have given up. Each of us must deal with the inevitability of death in our own way–and this website has helped me on many a long dark night. Best wishes to all who are still raging against sundowners, and to those who can more peacefully accept it.
Hi, i am a 20 year old college student and i have been taking care of my 90 year old great grandmother. It is becoming extremely hard to watch her at night because at night she starts seeing her son who passed 3 years ago. Recently she slid out of bed and though she has ways of callinng me out of my room, she was talking to him instead. I usually get up around 4am to use the bathroom so i check on her and she thought i was on my way to school. I asked her if she was hurt, and she wasnt, i put her in bed and as i was laying her down she was yelling at “someone” over my shoulder telling them not to come back because they had not helped her. Last night she called me in at 2am to “remove” the guests who were having a “party” in her closet, i was shocked cause the closet door was closed! it took a while for the rest of the family to believe me because during the day she is perfectly fine for a 90 year old. My family told me i was just being lazy and that im tired for school everyday because i talk on the phone all night! I got so fed up i told my uncle to spend the night and sure enough he verified these strange behaviours my grandma has been showing. we took her to the doctors and the told me that she was fine and that she is greiving her son. but looking at the symptoms of Sundowners, i believe this is a perfect fit. And i ask, will this get worse or will it plateu?
Your great grandmothers behavior is very common. I can’t say if it will get worse or not. But please keep your sanity and keep your compassion. Sometimes when the end of life is near elderly people tend to think they are seeing ones that have passed on. Very common. And hey if they already have one foot in heaven who knows what they are seeing. We will never know until we get there ourselves.
Today as I was visiting my Mom she pointed to a lady across the hall at the nursing home and thought it was and old friend that died years ago. She even commented that she was looking wonderful for her age. Go figure. She also made me write her a grocery list out and to bring the groceries right back because she is having a luncheon later and needed more roast beef. i said I would, tucked her into her bed, kissed her and she fell asleep.
So keep doing what your doing for great grandma, it takes a special person to be compassionate and understanding. Hang in there, don’t worry. Tell her next time you told them to keep the party down or you kicked out all her “guest”. I only hope I have a great grandchild like you one day. Peace.
Thankyou to everyone who has contributed to this forum. I have read all your comments and it has really helped me to understand how many are out there with the same situation. I am the primary carer for my mother-in-law who is 86 yrs old. She is blind with MD, deaf, has Parkinsons, severe osteoperosis, and dementia. She has suffered many TIA’s (mini-strokes), and after each stroke never returns to were she was in her health. The last one a month ago left her unable to walk. Fortunately, after a week or so she is now walking assisted and with a walker.
Lately she has been suffering severly with Sundowners, it starts about 5ish for us and continues throughout the evening. She has suffered this for a number of yrs and has progressively got worse. Some nights she has terrible nightmares, screaming and calling out. I wish there was more we could do to help her relax. My husband is wonderful and explains things to her and sometimes she just cannot be consoled.
She is also becoming very cranky for no apparent reason, and wants to know why this is all happening to her? It must be terribly frustrating for her and I feel life can be so cruel sometimes.
After reading the feedback, maybe music and light could help in the late afternoon/evening to help with the symptoms of sundowners. Anything would be good if it helps to take away the frustration for her. It is getting to the point where we are dreading 5 o’clock comming round.
It is wonderful when we can look after our families at home in their later years and hopefully give them a dignified and enjoyable life. We can all do our best and only our best. Good luck to all out there. God Bless.
I wrote the post above on 2/27.
After six days in the hospital my grandmother passed away very early yesterday. My regret is that she suffered nearly the entire time and, when I wasn’t there, was calling out for me. I visited everyday, sometimes several times a day but she slipped further and further away. She died on the morning of her 95th birthday.
Perhaps it is because I only took care of her for a short time but I have to say that I
was totally unprepared for the emotion I experienced; that despite all the frustration and resentment [and the GUILT I felt at being frustrated and resentful] I would have gladly turned the clock back to just spend another day with Ruth.
I miss her more that words can say.
Steve,
I offer many condolences on the loss of your grandmother Ruth. That was also my adored grandmother’s name and I, like you, would give anything for another conversation or a look at another sunset with her. We have what we have and we do what we can do and cherish the rest. Best of luck in your journey.
Janet
To Steve–so sorry to hear about your grandmother Ruth. You must have been a wonderful comfort to her, and I’m sure she loved you and was proud of you–even though she couldn’t show it or express it in her last hours on earth. We are now visiting my mother-in-law (95) in the nursing home (almost three weeks now) and she seems to be settling in. Our time with her is less stressful, and though we still feel guilt, we see that the “home” she wants to go to is the one in her mind. I hope when she passes to the other side, she will find that home and the peace she has looked for for so long.
Get the book The 36-Hour Day for all caregivers
My father-in-law is 86 yrs. old and does have sundowners until time changes. He is terrible when the days are short. He doesn’t watch T.V. , read, work puzzles, viist with anyone on the phone or do wood wooding. He just walks from his house to mine. He drives me crazy. He is attached to me to the point I want to pull my hair out. He has to know where I am at ALL time and he can’t even be left with his own son or grandson to give him his medication or my daughter in law who is a RN with out it being a war. This has been going on for almost 5 yrs. He has got to where he fusses about strange things and I ignore him. When summer comes he is a diffrent person.
My father-in-law is 86 yrs. old and does have sundowners until time changes. He is terrible when the days are short. He doesn’t watch T.V. , read, work puzzles, viist with anyone on the phone or do wood wooding. He just walks from his house to mine. He drives me crazy. He is attached to me to the point I want to pull my hair out. He has to know where I am at ALL timse and he can’t even be left with his own son or grandson to give him his medication or my daughter in law who is a RN with out it being a war. This has been going on for almost 5 yrs. When summer comes he is a diffrent person.
My 88 year old mother is visiting us now and we want very much for her to move in with us. She also suffers from demitia and Sundowners. I have always been close to my mom and having her get so angry with me hurts so bad. I know that if she really knew it would hurt her just as much. I find comfort in knowing that she will not remember what she has said the night before. This is a woman who has been so independent and now she cannot accept that she cannot remain independent. We know that it will only get worse and I am so frightened what might happen to her if she should go home again. I am the only one of my siblings that she would even consider living with and yet she still is fighting the thought of moving in. We have thought about not telling her and just not take her home.
I live with someone who is 49 and has been showing symptoms of Sundowners for many years. I thought he was taking drugs or drinking. His mood quickly changes and he is aggitated, very confused and picks fights. Can someone who is this young have this?
THEY ARE SO DIFFERENT… My darlin, my sister and I took care of my mom and dad for 4 years around the clock, two hospital beds, to wheel chairs, the whole nine yards, yet it was wonderful. Mom and dad died at home with us, we were able to communicate every day, they remembered everything, and each on the day they died was able to say I LOVE YOU, and thank you, for whatever small thing we might have done, while both were worried we had not got enough rest, or that each of them was in worse condition then the other. they passed within 9 months of each other, after celebrating their 50 wedding anniversary one month before dad passed. the only thing that keeps me from calling them back is the last day of mom’s life was very hard…… i would never want her to suffer that day again. .. Now.. i have my mother in law.. she has alzeheimers, and has small issues after reading your notes of sundowners.. she has been with us for over 3 years. I have dealt well and she hasnt been so bad till lately… I home school a 9 yr old with special needs and have a 4 year old. they came to me from another special needs child we raised in foster care.. so i am no spring chicken. My mother in law , has seizures and TIA’s, she in the last 6 months walks all day, up and down the hall, complains, and argues, she will have sweet minutes where she says , “i got this new shirt today, ” and i say yes it looks wonderful.. she tries to be nice to the kids.. but those moments are fewer and fewer these days. My kids see how I am responding to her, so i try to say to her what I want them to say to me, when my day comes. it is hard… my 4 yr old is watching the 78 yr old, saying, sit down, don’t do that. yesterday, after 8 hours of HER, ALL ABOUT HER, you can not walk with your kids, talk with your kids, plant a flower, carry on a conversation for 5 minutes,without talking to , or about HER. GUILT.. jezzz… Guilt, I am learning to shake it off… I remember one day on my way to work, with my parents at home, i would be up at night, from room to room, breathing txmts, emptying pots of blood, going days with very little sleep and so scared Mom or dad would leave this world while i was at work i was crying driving to work, I felt I was chasing the grim reaper away from their doors nightly, and as I was driving, a voice came to me and said… IT IS NOT THE GRIM REAPER, is it angels, and they are not in a hurry, they are only there to watch and take over, when my time for caring is over…. A COMFORT came over me, and I relaxed, as who else would i hand off the most precious things in my world to but GOD’S ANGELS. .. I never stressed over the grim reaper again… and when it came time to hand off, it was ok, I miss them greatly… Now… with my mother in law, I can’t wait to hand off, and the guilt of that is unreal… i have been up for nights, with things that are not real, i am glad to say we dont chase spooks with her, but she wakes constantly, see the potty chairs, SAYS OOOOH I MUST SIT ON THAT…gets up, cant get back on the bed without help to lift her feet, so she walks and yells… i put her back to bed… 45 minutes later, she wakes and sees the potty chair and say.. I MUST SIT ON THAT….. and here we go again. If it werent for laughing at somethings you would go nuts… I do want to say, after having been on both sides of the fence.. their is a time to hand off… sometimes to the professionals, and sometimes to God… YOU.. deserve a good day, and you are here to do a lot, but some things require a team… not and individual… It is ok, to hand off , we are not yet ready to hand off with my mother in law, but we are talking what will be the point , at what point to you have a team take over, we are now imprisoned, we can not do anything, with her because of her physical health, she can barely walk, and her mental health, in her states of confusion. I could take care of 6 elderly like my mom and dad, and not feel near the exhaustion i feel with one alzheimers person.. I am blessed to be in a relationship, where we talk as a team, we plan as a team, we trade off, you may not have a spouse who takes over when they come in… i know she will not remember what i said or did to her or for her in 10 minutes… but , my children will remember how i was to her, I say… i have granny, i cant walk while you bike, i have granny, we cant work out side, i have granny, we cant go to the easter egg hunt, … my stress is so high i am getting sick from dealing with the situation.. so whether is it you mental health or physical health, you are taking a beating trying to do that which a team is needed to do. there are some good nursing homes as well as bad ones, the thing not to do is abandon them, once you find a team to work with them, even if they dont know, go by and check on them in the nursing homes… but you have to take care of yourself, and I know i have to take care of me, I have kids to raise, I have been getting very sick.. so.. please take care of yourselves, and hand off to a team, when you know the time is right, letting go was very hard for me with my parents… I watched as their bodies, shut down.. I watched as they visited with family on the other side, they were there more than they were with me… my mom and dad had all their senses when they passed, they told me seeing the otherside with eyes wide open… we celebrated.. the reunions they had coming… I might cry in my room… for i was loosing them.. but I was happy for the otherside whom they had not seen in a long time… my parents told me of those who came to them in their sleep as well… and how good they looked, and how happy they were to see them, how could i not be happy for them… their bodies were tired.. they could tell me that daily… when we finally called in hospice, they had a book, with the poem… the last part was of a ship sailing… we cried THERE THEY GO.. the other side.. cried HERE THEY COME….
it’s ok to let go… my love to you all… and my understanding…
to Lynda and all, one month ago we decided to let my mother-in-law be cared for by a nursing home team. For me it was good decision, as I had the bulk of the care of her at home, and had a surprising amount of guilt, though I was doing the best I could. She is doing about the same at the center as she was at home–a big relief to me. She still knows her son, but not me (for ten years I was her primary caregiver). She still gets worse in the p.m. and chatters for hours on end. It is harder on my husband who cannot be in charge any more of her life, and he is gradually letting go. This is a valuable service that the center provides–giving the ones who are left behind a cushion of space to become accustomed to the absence of our dear ones. He talks of bringing her back home for the end, so she will not die away from her family. So this we will do if we have the advance knowledge. Lynda, your story is very comforting and enlightening. I truly could not have provided the care for her as much as I did if I had children. My grandson, who is 13, observed one day, “you’re busy with her now, we’ll have time to visit later” –so he was able to give me support by being patient. God bless you and your children, who will have the opportunity to someday care for you.
i have a friend that is 30 years old . i am noticing her having some signs of sundown syndrome. is she to young to be having this problem? and if not what kind of help can she get and where.
Does anyone have suggestion about how to respond when your dad (87 yr old) wants to go home or wants you to get him out of jail when he is in house he has lived in for the past fifty years. I understand the home he is talking about is only in his mind, but you cannot tell him he is already at home. He won’t believe it. I just go along with him , but is there anything, any trick that would help and comfort him? By the way, Brenda, your comments were very helpful to me.
It’s going to be hard to type this without any mistakes because of tears running down my face, so please forgive errors in this typing.
I too would like to know of any “ticks” that may help with sundowners. My 80 year old father has it. My dear mother tries her best and I have really seen her age in the past 6 months. I am an oly child and I wish I had siblings to lean on.
AT what point does one turn the care over – my mother doesn’t want to do so as long as he still knows her – which he does in the mornings.
When do the tears stop? Do they ever?
Michael T
to Michael T,
You cry and you deal.. some times you go from being your dad’s son, to being his social worker, advocate, then when you least expect it, you are the son, and you cry again.. worry about your mom, she needs help, call all the local services, senior services, hospice, see what is availible to help your mom. then look at the nursing homes, who give respite care(that is weekend care). she needs time, to be her, and get a break, we have nursing home, that has an open bed on weekends, and we put our mother in law there. They have CNA’s who help, we give her a book with pictures that says we will pick you up Monday. and a chart to mark off the days. we take her over on Friday after noons, and pick up on Monday mornings. I didnt have that for 4 years, and it is wonderful. we can have a touch of normal life. Your mom doesnt realize how much she is doing and how tired she is. Our loved ones dont sleep at night, so we dont sleep. take care of the care givers… it’s ok to cry, I used to do it continually, now once in a while.. pray, do the best you can.
Michael, my heart goes out to you reading this. I am an only child also and it’s very difficult without any siblings. Unfortunately, my parents had me when they were older, so now that I am 44 years old, I’m having to deal with the same thing. It’s terrifying to see it and even worse because there’s not much you can do on your own. Get as much help as you can, ask for help and yell if you have to (I’ve found raising my voice tends to really get their attention as I scare the crap out of the medical profession!). Also, get an attorney. I’m taking my dad to the elder law attorney tomorrow to sign new papers including a health-care by proxy directive which allows me to make all the decisions related to his health care. We have a power of attorney (POA) but even with that, they sometimes won’t give you all the medical records that you need….I can see the point of HIPAA but did they ever hear of extenuating circumstances? Sheesh.
mike
i feel your pain…mom is only 68 and showing signs of dementia…
i dont think the tears ever fall….something that has helped me alot lately
with this new diagnosis of sundowners….is a book.
i recommend you read the book called the shack….its life changing
allows you to know and think of what GOD wants for dad…
in addition, i am a dir of a retirement assisted living community…GET HELP
children and spouses should not ever be caregivers its too close…
get someone to come in and help with dad…as long as you can….i agree
if he still remembers then allow him to be home….ur mom needs help at home
and so do you….
at some point the BEST THING for dad will be a unit that can keep him safe
visit often and really look for the best affordable place….
i know your exhausted…i am too….life is a circl…and its our turn…but
your dad would never want you to cater to him and be sad….just make sure
he gets the care he needs…and embrace that you ARE doing the best
and for his best interest….
to Marilyn–it was the same with us for at least the last two years–WHEREVER my mother-in-law was, she wanted to go “home”–sometimes I would ask questions to try to figure out what place from her past was on her mind. It was a place with stairs, a bathroom in the basement or with an outside toilet which she was always afraid to go to alone–especially after dark. In the nursing home now, she still wants to go home, but seems OK to be told, “As soon as you are stronger, we will go home…” or “whenever you are swallowing better, we will go home.” This way she seems more content to be where she is–which she does not know is a nursing home. Her dementia makes for some days being completely in another mental state, and some days she gets scared about choking, but on those days she is really “better” since she is in the present and can carry on a limited conversation. The nursing staff are cutting back gradually on her meds, which seems to help with her cognition–mostly Ativan as needed, and no Lasix at all. By the way, some of her agitation was from needing to go to the toilet but not being able to express that urge. When we regularly toilet her, she is much more restful. Also another trick they taught us, when she gets agitated, we distract her by “playing” cards. This usually requires us to help her with each hand, but she has a vague idea what is going on. She loved dolls all her life, but has NO INTEREST at all in dusting them, dressing them, etc. So maybe, you could experiment with your dad by putting items within his reach, like a puzzle, non-dangerous tool (like sandpaper and a piece of wood), to see what things he could focus on, even in a limited way. Also we found out noises negatively affect her–like a loud truck or airplane, which can trigger agitation. Trial and error, one thing at a time, one day at a time–God bless you and your dad. Hang in there, your concern shows you are doing a good job, and trying to help him. He is lucky to have you.
Hi to all here. I was just searching for information on Sundowner’s Syndrome on Google and thankfully found this website. It is reassuring to read that so many others are going through the same thing and that I’m not the only one. My father, who is 93, is living with me while I complete my paralegal certificate in Health Law at Widener University in Wilmington DE. I live in West Chester, PA and am changing careers at age 44…had I known he was going to get this, I would have stayed at my old job, bad though it was! Soon after moving here from Central PA last May 2009, he really began to get dementia. I know he had symptoms of it before, but the move made it much worse. He got very agitated and one day was threatening me. I was in the bathtub trying to get a bath and wash my hair and he was screaming at me because I wasn’t fast enough and he was “dying”. He said he felt like he wanted to commit suicide (sometimes I wish!). Anyway, to make a long story short, he was admitted to a psychiatric hospital for 2 weeks and treated by a geriatric psychiatrist who put him on Seroquel. He has done well on this, but needs another geriatrician; the one he had was very young and inexperienced and frankly, I can’t believe the University of Penn Health System hired her;she reminds me of an inept kindergarten teacher who talks in a “baby” voice. She didn’t want to prescribe other meds for him, including Axona, because she didn’t know about them. I am taking him to a geriatrician with a lot of experience on May 20 and will post here how it goes after the visit. It’s a real uphill battle and nobody understands this until they’ve had to do it themselves; I had heard about it, but until you have lived it you have absolutely NO IDEA! He is okay during the day–very quiet, no agitation–but as soon as 5 pm comes around, watch out. He is given the Seroquel right around 4:00 pm. I also have found that he cannot have coffee or too much tea, as that makes the agitation much worse. The biggest problem is the lack of short-term (working) memory; he recently left a pan on the stove while I was out of the house and when I came back, I found that it had caught on fire and he’d put it out with a towel and a throw rug and then did not remember any of it. That is what is so terrifying. He now has a home-health aide with him when I am not here so he’s never alone. The interesting thing is that he knows he can’t be alone and although he initially resisted getting an aide, he now realizes he has to have one, and she’s great with him. Ultimately, I think, the USA has to have more support for caregivers because as the population gets older, this is what is going to happen, and you can put that in the bank!
I was told to get the book 36 Hour Days….it is so informative and so helpful for how to talk to your parent/grandmother father with dementia/alz…..
they MUST get reassurance at all times….joking is not something they understand most times…sarcasm huge no no…..view your parent as a child who will require explanations…and patience to understand…
its so incredibly hard…tears and siblings who do not educate themselves do NOT understand….make them! FORCE THEM…or they will yell and get frustrated and cause her tears…and that is NOT supposed to happen…ever..
Very heartbreaking stories to read. I suggest looking up delirium, as this is the most common cause of many of your loved ones symptoms. In an elderly person, having a new infection, or a hospitalization or surgery will often cause delirium. It is a waxing and waning condition that is often mistakenly called sundowner’s. In the hospital/ICU we use Haldol for it if it must be treated, but try to avoid valium and related meds. (ativan, xanax….)
Good luck to everyone, and keep on being the gentle, caring relatives you obviously are.
Jill, thanks for reminding me of HALDOL, I had forgot of it. It might work better than valium or zanax. I wil ask her neurologist. lynda
My mom is 75 yrs.old, and I can’t be sure what is wrong with her as after 6:00 in the evening I can see a change when I try to explain things to her. She can’t understand anything I try to tell her. She starts telling me things that happened back when she was a child, and doesn’t remember what she was talking about. Sometimes I get so frustrated I have to leave the room to gather my wits and she starts crying or just pouts. She has chores to do and 1 chore in particular is doing the dishes and each time she unloads the dishwasher she either puts the dishes in places where they don’t belong or forgets where she puts them. She often forgets to eat or when she ate last. She acts younger than my 3 yr. old grandson at times. She doesn’t like to go places with me and would rather sit in her recliner and rot than go anywhere. She can’t wait to get home and get back to her chair. She doesn’t like to take showers, telling me she is afraid her skin will get wet. What do I need to do or who do I need to talk to? She seems ok when she sees her dr.and says is just fine and hates it when I tell him what she is doing. HELP!!
Dear Kathy, It is hard when our parents become our children. The realization that they are not the parent in the house, they have to be cared for, and need reasurance like a child doesnt seem normal. however, each of us as we begin our walk through the valley of the shadow of death, will each have issues someone will have to deal with. She is not rotting in her chair, it is her comfort zone, as she is going out of this world and into a new world, like kids we cling to those things that give us comfort like a child and their blanket. Like a small 3 yr old, she can no longer do chores correctly, and we have to pick chores they can do. if she can load the dish washer, have someone else empty it first. It is hard to continue to RESPECT the adult in them, while caring for them as a child. They become more uncomfortable in public places or away from home. The book 36 HOUR DAYS may help. She will only get worse, not better, you will need a support net work. Look at elderly day care. To help. You will have a lot less arguements, when you become just a listener. comments, when they are in the past .. like .. did you have a good time then mom, are your friends there. Don’t argue, just love them as they are, and for what they can do, not what they can’t do. WHO DO YOU TALK TO; a senior care doctor , someone who specializes in senior. Geriatric. Get a referral to a neurologist, so you can get the right meds to help her. You are her parent now, only you cant schold her, it won’t help and does hurt. I hear your frustration, there are support groups for those dealing with caring for their parents, they have idea’s that might help. You have a hard job. God Bless.
This can also happen to someone with brain trama, no matter what the age. My girlfriends daughter was in a car accident, and she has sheared her brain, and now has Sundowners, they don’t know if it will go away (we are hoping so as she is only 23 years old). Does anyone know if giving a sleeping pill at night helps?
My grandmother has Parkinson’s disease. Recently she has been getting paranoid at night. She constantly thinks people are looking in her windows at night, shining flashlights at her, trying to break in. She panics and turns her alarm on alot. The neighbors never see anything, nothing has ever been found to show there is any fact to what she believes she is seeing at night. Is it possible that this is a problem stemming from her Parkinson’s Disease?
Sandy, my dad has PD too, and has the same kinds of issues. His doctor thinks a lot of it is the PD meds. In fact, he just took him off Aricept to see if that helps. I recommend that you get a referral to a clinical pharmacist to review your gma’s med list and see if they can make any recommendations. Good luck. My dad’s behaviors are that he will get up and night and put all his stuff in a box because he was “told” that he was leaving. He’s done this 4 or 5 times in the last couple weeks at the new care home he’s at. The last time he even said someone else did it, not him. He’s also gotten really aggressive saying he’s looking for a weapon and that he’s going to hurt the people there. We think that might have been a reaction to the shingles meds he was just prescribed before that happened, so we stopped those and it hasn’t happened since. He also has progressive dementia and thinks he’s not an American anymore because he’s being kept there against his will and wants to go back to living alone. He wants to talk to the state department. He also asked me if i thought he would make a good fireman or policeman (not would have made, but make). Truth is, we’ve been given a 30 day notice to vacate him because of the aggressive behavior, but his doc thinks we can get him stable by tweaking his meds here and there. Only time will tell, but he does know that he’ll have to go to a more secure location if his behavior doesn’t change, and he knows it won’t be very pleasant. This is very sad and scary for all of us to watch and try to deal with, and i think it will only increase in prevalence as years go by and more baby boomers are aging. There are scarcely enough secure facilities that handle dementia and take Medi-Cal, for example. What are people supposed to do? Most of the time these kinds of patients cannot be cared for by family in their home. It’s way too difficult on everyone and not the best thing for the patient.
On M/D my sister came by to see mon and she asked her who she was there to visit. My brother later called and she asked who he was. Now this was in the day time and she never seems out of sorts during daylight hrs. As time progressed I had to leave for a short errand, I told her I was leaving, and when we returned she started screaming at us for not telling her we were leaving. I cooked dinner and she couldn’t tell me whaqt she was eating for dinner. She said it was good but what was it. When we were watching T.V. she had to narrate all the movies which forced me to leave her to her own devices. She then got ready for bed, and she uses a CPAP at night only and insisted it was positioned with the nose piece was to go on the back of her head. I finally had to force my hand to make her wear it correctly. I was ready to yell at her but just went in the other room and cried. She sits and talks to the T.V. all day and night telling them what they should be doing, like they can hear her and then shes picks up a shoe and throws it at the T.V. I’m confused at what to do.
kathy, it sounds like her condition has progressed to the point where it may not be feasible (or even best) to keep her at home with you. there is no way you can keep dealing with that, and from what everyone says it will worsen over time. i feel for you, because we just had to move my dad into a home after he has been cared for 24/7 in his own home by a live-in caregiver. of course he hates it (even though the place is like paradise, much nicer than anywhere he’s ever lived before) but it’s the best we could do for him with his income. we are applying for Medi-cal and know that we will have to move him to a lock-down location if his condition progresses further. so hard on everyone. i wish you the best of luck and wisdom for her future decisions to be made.
I am new at this. My husband had been diagnosed for two years. Last week, my husband and I bought carry out breakfast from a Coney Island. He got the super breakfast, which has everything in it. After eating, he offered to take out the garbage. When he returned from taking out the carry out containters, he asked, what are we going to eat for breakfast. He became very angry when I tried to explain that he had just eaten. I just cooked another meal and he ate again. On Christmas eve, our children came over and brought gifts. He opened them and appeared to enjoy the time, but the next morning he didn’t know where anything came from and why it was here. We all have to pray for one another as we deal with this evil disease. I want my husband back, but I am at a loss.
Thanks for the advise. I am going to see her dr. in 2 wks and see if he is still intertaining te idea of more testing. She had a very bad kidney infection that ravaged her whol body laast year 2 times and this is when she started acting like this and along withe the past illness she had fallen down about 10 to 15 times in the past 1 1/2 years. each time she manages to hit her head and she is way out there when this happens. Within the last 9 mo. each time she falls it makes it more and more difficult for her to get around and can’t stand up straight.
My Mother also is possibly experiencing Sundowner’s, along with other complications. About 10 days ago she had erratic behavior, which included not believing she lived in the assisted living she had been in for 20 months, threatening an aide, and trying to walk out. After I took her to the hospital, it was determined that she had a urinary tract infection which was suspected to be the culprit for the sudden-onset erratic behavior. After antibiotics she still has confusion, but no real erratic behavior. Now the confusion is considered to be related to Sundowner’s. After a trip to the doctor soon, maybe we will know for sure. It certainly does appear that the UTI or a kidney infection can cause irregularities in behavior. Also, a friend of mine had stroke-like behavior with a UTI.
I care for an elderly lady friend in my home. Last December we got up one morning on the coldest morning of December only to find her in her floor with literally everything all over the floor. It was a horrible sight, which looked like a crime scene if you asked me because in falling or getting out of bed she scraped and hit her arms and legs and they were bleeding. When I asked her what she was doing she responded in such a way I thought for sure she was having a stroke. I called an ambulance and she was taken to the hospital and the ONLY diagnosis they came up with was a UTI. I had been told this infection could cause confusion (major confusion) in the life of an elderly person, but I didn’t believe it until I had to experience firsthand!! I don’t understand it, but sure as life, that’s what happens. Now she fell and broke her pelvic bone about 6 weeks ago and she hasn’t slept an ounce in her bed, at night but she sleeps sitting up in her wheelchair during the day. Someone told me this is referred to as “Sundowners” s syndrome where they’re afraid to go to sleep at night for fear they will die. I have tried everything to get her to sleep at night to no avail. She goes to the doctor in a couple of days. Hopefully he will be able to offer me something that will help her.
Darlene,
My dad did the thing with taking all his stuff from everywhere in his room and putting it all on a pile on the floor. He would also keep moving stuff from place to place, all day and night, obsessively. When we moved him into the first assisted living home, it got so bad they emailed me pics of what he did, and i couldn’t believe it. His room was trashed. He would also pack up his stuff and say he was told to do it because he was going to be leaving in the morning. They checked him for UTI’s every time, never had one. But every medical professional that has ever seen him confirmed the sundowners syndrome symptoms. He also would respond (or have a lack of response) and they would think he was having a stroke. Most of the time no stroke activity was found, although he did have more than one stroke over the last couple years. He also did the refusing to sleep in his bed and only would sleep in his wheelchair. Good luck with the doctor appointment. I am not aware of anything that helps with this condition, except heavy sedatives and restraints. It’s a shame, an awful way to live. My dad just passed away 10/29 (we are relieved his suffering is over, so it’s a good thing). Hate to be a bummer, hope it will go differently for you.
Sounds like she could also have some brain damage from the falls….possibly subdural hematomas, possibly hydrocephalus. Both very serious. She should get a CT scan of the head. Falling and not being able to stand up straight are classic symptoms.
Dear Kathy,
I don’t know your whole story but have worked with the elderly for years and have seen this falling syndrome many times. There could be mechanical inner ear issues, medication reactions, poor nutrition/ dehydration, joint issues and possibly a neurological disorder. Have you considered a short term stay in a nursing or rehab facility? If the falls do not stop, it will be very difficult to diagnose the underlying cause and could actually make the dementia worse. There is also the issue of risking further disability with a fracture, concussion, blood clot. The loss of self confidence and fear caused by these repeated falls additionally muddies the waters and makes the treatment more complicated. Good Luck with this situation,
All the best,
Meg
As it turns out, my mother-in-law has a heart condition which had gone undiagnosed until her first fall. As long as she continues the medication she does well but if the heart meds are neglected she ends up in the hospital and rehab again where discussions continue within the family and physicians in regard to whether or not she needs the heart meds. Sounds like they’re playing with mother’s life, doesn’t it. She has terminal cancer now and their discussions are neverending. Some think the heart meds should be stopped in order to treat the cancer while others think the cancer treatment should be top priority. Unfortunately, she waited too long. In her state of dimentia she never knew she was dying and now she hasn’t got much time remaining. PS The falls will not necessarily stop inside the nursing home. They try but even standing right beside them, they still fall.
Just wanted to tell those of you who have written encouraging words to me from time to time–my 95 year-old mother-in-law joined the angels on Mother’s Day 2010. After living with us for ten years, in a nursing home since March 1, she developed accelerated swallowing problems., complicated by congestive heart failure and atrial fibrillation. We had decided to bring her back home, but we wanted to be sure she did not have pneumonia, and she was to have x-rays the next a.m. My husband had given permission for hydrating IV’s, but before she had to endure the procedure, which we know would have scared her and caused her great pain in her dementia, she went quietly to sleep holding her son’s hand. When we could no longer care for her, the nursing home did. When she could bear no more and was sooooo tired…God took over her care, and opened his comforting arms.
So to all of you caregivers who are still hard at work, bless you. God knows what you do, even though your loved one may not. We are still numb, and not sure what to do with ourselves. To the website people, thank you for what you do for all of us.
Brenda, I am sorry to hear about your MIL. I am glad he was with her when it happened. Thanks for the last paragraph words. I think it’s all really important to remember that God is in charge, it’s not all up to us.
May God bless you and your family. Even though I lost my mother three years ago to Alzheimer’s and Parkinson’s, it is still fresh in my memory. When they are sooo very tired, you pray that God will take them into his loving arms. The numbness will soon wear off and hopefully, you and your family will remember mostly the good times before the dementia. I will be praying for you and your family.
My Dad was sent to the Hospital by ambulance after being found in his apartment. He is Diabetic and his Doc had him on 4 different Narcotic’s along with Diabetic med, blood thinner, ummmm, I forget the entire list! However, he was moved from the Hospital to a Rehabilitation Center for PT, OCC, and strengthening to see if we could get him back to his own apt. It has not worked, and in fact, revealed a very disturbing diagnosis of Sundowner’s, although the Doc in the Hospital diagnosed him with Senile Dementia. His age is 91. He had been driving to the store and back up until this incident at home. He had 2 other fall incidents, and now I’m very concerned that he may have had underlying illnesses that contributed to all of this, along with FOUR Nacotic’s given to him! One given should never be prescribed for anyone over 60 because the body does not get rid of or process meds like we do at 30 or 40′s. We recently realized he will not be going home and is in skilled care now. I have not lived at home for over 43 yrs, and actually live out of State, so I only knew when I would call him, VERY FREQUENTLY how he was doing. He seemed to be tired all the time, and I figured it was a Med I KNEW HE WAS ON, not all the one’s he had in his Apt. I guess I’m feeling pretty angry right now, not knowing but most of the family “did not want to upset me” so I only recently knew how bad Dad was doing. (I’ve had MS for 40 yrs and recently was homebound, wc bound the last 8 mos. with caregivers in my own home. I’m so sad thinking of all who have gone through this, and our journey is only just beginning. Thanks for being here!
Just wondering how fast dementia can take someone? It was diagnosed last year and now my Mother keeps saying she’s leaving this house and going home. A couple of times I had to go outside to get her. Since then there is always someone here. It just seems like it’s progressing really fast. Is this possible? Then she’ll have a week or two of almost normalcy, then 3 or 4 days of absolute craziness. I don’t get it. I just need some advice or I don’t know what…thanks anyone for answering me. Frank.
Frank, it is definitely possible that dementia moves that fast. At lot of it can be medication related, that is what I am finding with my dad. Over the past few weeks he’s gone from nice clear sometimes confused gentleman, to aggressive threatening violence looking for a weapon, trashing his room convinced someone was going to kill him, back to nice and apologetic, and on and on. We just placed him in a residential care facility in April, but it’s looking like already his behavior will necessitate us moving him to skilled nursing. I would recommend that you ask the local area agency on aging or senior centers for some good referrals for geriatric specialty doctors who are dementia experts. I would also recommend that you have a clinical pharmacist do a review of her meds list to see if they think they could be causing some of this. Good luck to you!
Frank
My Mother was diagnosed with Normal Pressure Hydrocephalus and had a vp shunt placed. The shunt broke and Dr, did a shunt revision and caused a brain hemmorhage. Since then all her symptoms have gotten worse. Some have gradually improved but the one thing that does not change is when she gets tired, she says she wants to go home. She asks us to take her home and I am sure she is talking about the home she is in. It’s hard to deal with and I can relate to how you feel.
Sandy
My dad has been acting strange, no diagnosis, or anything.I have noticed things like he will get up ,go in the kitchen ,get a butter knife out, put it in the sink and go sit back down. Then he does it again a few minutes later.Also he’s up at the crack of dawn doing yard work?! I know he won’t let me go to the dr. with him what do I do ?
Amy, why won’t he let you go to the doc with him? I was going to suggest you take him to a geriatric specialist (how old is he?) to get some tests done. Your local alzheimers association would probably know some good ones to refer you to. Find out if they take medicare first. The Alz association could probably also give you a lot of good advice on how to work with him from now on. I am sure some of the others on here will have some good advice for you. Hopefully his will, power of attorney and advanced health care directive are done. If not, he should really do them before he gets too far gone. I suggest you read the 36 Hour Day (it’s on amazon). It will help you prepare if he is indeed heading towards a dementia. Good luck!
Hi, Tammy my mother has been vaguely diagnosed with ALZ, however there has been as of late some disturbing behavior. For the last 3 days after sundown she has had varios episodes of what appear to me to be sundowner syndrome. She’s 86 and can still walk but it’s not very safe and she HAS had both UTI’s and a
TIA back in 1999. The first night I walked upstairs and she turned suddenly to me and said, ” the tv. is on be we’re at a different place. It was so scrambled that the entire scenario was never made coherant. But it was as though she was hallucinating. Last night she kept asking what time it was (this was after sunset) not realizing how disorented she was I said “oh it’s almost ten” she replied”well I guess it’s time to have breakfast now”. And though I told her it was night time she wouldn’t believe me, and persisted with this look of incredulity. Tonight she ate at 6:30 pm. and at nine thirty said “when are we going to eat”? I told her she had already eaten her reply was “who do you think you’re fooling”? So I showed her the dirty pan etc. to no avail.
My imediate concern is that she seems to be unconvincable as to the truth, and I am detecting a slow rise of her aggression or hostility toward me because she cannot believe me.
Perry, I will suggest the same for you as I did for Amy above. Have you read the 36 Hour Day (scroll to the bottom of this page)? It will help you a lot as to how to deal with her increasingly aggressive or incredulous behavior. There are definitely right and wrong ways you can handle it. It’s a tough situation, and there isn’t necessarily an answer. What meds has her doctor given her to take, if any? Trying to convince them of the truth generally doesn’t work, although it’s our natural response. You’ll only frustrate her and yourself. If her hostility increases, you may have to consider assisted living. When my dad got to the point that his one caregiver couldn’t handle him anymore, we moved him out. His symptoms progressed super fast, and we went from one assisted living, to another, then to skilled nursing within a 2 month period. That started this April, and he went home to Jesus on 10/29. I am relieved that his suffering is over. Most cases don’t move that fast, and I hope and pray that your mom’s situation gives you time to think and make the best decisions possible for her (assuming you are the one in charge of doing that?). Good luck Perry.
My mother is progressively getting worse with dementia/Alzheimers. she has fallen 3 times in the hospital ward & we think it may be from neglect. They said she had a seizure, but she has never had a seizure before. I am wondering if the Alzheimers has anything to do with her falls? Her doctor doesn’t explain what is going on, with her falling. we are ready for file a complaint with the state on elderly abuse & consult an attorney. My mother is confused & cannot tell us anything about her falls, & what the hospital is saying does not add up. I cannot bear the thought of her being abused, but is the something medically related to her falling?
Dear Rose,
My mother in law is having the same falling problems, no one can explain because they don’t know… Like others here at sundowners , falling is part of the problem, they loose ability to keep balance. 3 weeks ago, my mother in law could eat and drink without assistance, walk with a walker, tell you if she needed to potty, and walk with you to the potty. she could walk to the car and get in and out.. 2 weeks ago, she could walk with a walker, get in and out of the car with assistance, but would forget she was in a chair and mess in her pull ups, she started throwing up because she was not chewing her food, then she would forget to finish eating if you didnt tell her to eat each bite. 7 days ago, she could stand with the walker, sit in the wheel chair, stand at the car so you could help her get in the car to go to day care, she would eat 1/2 of her food, and began sleeping alot, the day care said she was more combative and needed her meds. on an emergency visit with neurologist, whom she has seen since diagnosis of alzheimers ( which often comes with seizures) he siad she was getting worse and it would come fast now.. she struck him 3 times in the office.. he is the sweetest man alive, and she wanted to take him out… then out side his office, she could not stand with walker to get back in car.. 2 days ago.. we got her up to go to day care, she could no longer control her legs, her brain, would not tell her legs to stand, and she can no longer follow directions of any kind, today… she is bed ridden, and has to be hand fed… helping your parents cross over will be the hardest thing you ever do.. at first there is shock that no one can fix her, then how to handle it without the frustration and anger stressing you out, it is what it is.. no one’s fault, how to help your love one to cross over.. treat them with respect, even if they are not giving it to you (they are sick , you are not) , keep them clean, give them what they want and don’t force anything you dont have to . dignity sometimes means dying without arguements.. the day car said she is always on her feet following someone.. my mother in law fell 3 times in one weekend, one time we were within 4 feet and she had a walker, but her balance was off, and we could not move fast enough, then she fell twice at the day care, they were scared we would be mad, NO, we understood it is part of alzheimers, it takes balance away from them. there is nothing we can do, love her, even if she doesnt know me, keep her the way i would want someone to keep me.. Let go and let her cross over, with love. we know we have done the best we can and are still doing, so when she gets to heaven and looks back and all things are clear, she will know we did our best.. and she was loved.. that is all you can do, keep them comfortable and give them respect, and know when to hand off if they require a team to take care of them. we are looking for respite in a nursing home, but hospice is coming in this week, and may help. Whatever you do for her, she will know you did with love.
I have just found out about sundown syndrome as my mother has it and at the moment we are having most of the systems that you have said , and it has helped to to read what you have written and a lot of things are falling into place thank you
My father in nursing home broke two bones in his neck, is in brace but keeps getting up by himself at night to go to restroom. Glad to understand this could be a “part” of why he tries to be more active at night. It also seems to affect his sleep; rolling in bed, etc. which worries me since he wears neck brace. Any medication they could give. No restraints but nurses do not always hear bed alarm that beeps when he attempts to leave bed.
jmixon, my dad is basically bedridden for most of the day, but at night he somehow can jump up and down from the bed to the floor. they turn their back for a second and he’s out of bed. just recently he fell and hit his head. he is ok, this time. i know of no meds, other than super heavy sedatives that keep them in bed, that help with this problem. i share your worries. restraints are awful but sometimes necessary. i know that some facilities are less able to use them than others, and that their ratings on medicare.gov go down the more they use them. very frustrating for everyone involved.
My Dad has had Alzheimers for a long time about 12 years. He has slowly progressed which wasn’t so bad at first. But now. it’s been five years. He is in a wheel chair and just this week he has forgotten how to feed himself. I know this is part of the progression of the disease, but because his has moved so slowly, this change really shocked me. I am adjusting that he has to be fed because I have to. I know the next stage is even harder, when he foregets how to swallow. I really hoped the Lord would take him before this part. I know that is selfish, but it hurts so much to see him like this. I have been walking through this with him and I feel like I enter his world everytime I see him and then leave it and go back to mine. I feel like part of him has already gone and he has. This part is the hardest. His eyes just look right through me and he is so disconnected. I know he is not in pain which is a blessing. That is about all….it’s just hard
Please don’t jump to neglect. Although I assure you neglect happens, old people are quicker than one might think. Turn your head to get a wad of TP and they’re up off of the toilet and down of the floor as fast as that. It happens to the best of caregivers in the best of places and under the best of circumstances. You’ve said what the hospital is saying doesn’t add up. Okay, good starting point but remember your mother is confused and doesn’t know what happened so don’t try to compare stories. You might check BBB or other sites to find out if your hospital has a history of neglect but please don’t run someone through the wringer who hasn’t done anything wrong. Check your facts.
Meg and everyone, the problem about getting the story straight also works in the other direction, I found out. Thursday night my dad apparently attacked a caregiver. According to her, he was trying to kill her. She said she was covered in bumps and bruises but my dad’s friend saw 1 only when she showed them to her. They said he broke a window trying to escape and cut his hand and was chasing everyone around with a lampshade naked. Turns out he pushed out the window screen frame. Didn’t break the glass or even cut the screen. He had an abrasion on his arm, not a laceration that was bleeding all over the house. Obviously something happened, but we will never know exactly what. No reliable witnesses, including my dad. THEN to top it off, the caregiver was asking me to pay her medical bills and give her money for time she couldn’t work, when in actuality she was told she could see the doctor using the work comp coverage but she declined. She was also offered another position with the same company in a different house away from my dad, but she declined that too. She didn’t miss any work the 2 days my dad was there in that state of mind. She worked with him both days, no missed time. Boy was her boss pissed when my dad’s attorney called him. Then she got in trouble for trying to extort me behind his back. Nice, huh? Now that my dad has a documented violent episode, we can’t find a place to take him anywhere in California, and we have no idea where to place him. Aren’t we all having fun yet? :\
I have been arguing with everyone that they are giving myDad medications to make him behave irrationally but than I took him home only to find out the diease has progressed and its not the docyors and nurses its my Dads illness.
I feel so strange entering this site but I am having such issues with my mom that i feel others can help. my mom is in the advanced stages of als, my father whom is 90 still feels its his responsibility to stay with her, we take her out every day for 5 hours to give him relief and i know its not enough. its killing him. she has wanderd and most recently at night, trying to go home to her mom. she believes she is 35 although shes 88 she deprestly wants to go back to her childhood shen she was wit her mom, dad and her brothers. she doesnt remember having me as a daughter and only relates to her eariler life, im guessing when she was about 24. what does anyone suggest? I am planning on taking her on a “vacation” to my summer home togive my dad more relief maybe he can sleep. he is such a hard and loyal person i just want both of them to be happy
I am going thru the same problem with my Dad. Some days he thinks it’s 1970 and others it’s 1900, but so far it’s never been 2010. He has also fallen alot and it may or may not be the hospital. I recently ordered a book that really answers alot of questions. It’s called “The 36 hour day” It explains where the disease comes from, what to expect and some tips on how to handle the unexpected memory problems. According to this book some dementia/als patients can lose thier balance and fall or have very weak legs. My dad has fallen probably 10 to 12 times in the last 3 months. He has not hurt himself so much but he could and now we have him in a nursing care facility and they are taking real good care of him. I would suggest you get the book and educate yourself on whats next. It has helped me a great deal. Good luck and stay strong.
My Dad, sisters and I ALL read the 36 hour day and it helped us so much while Mom was going thru her Alzheimer’s. She suffered with it from 1998-2007; it was agonizing. My dad was able to care for her at home with the help of daughters and some skilled “at home” help but once she fell, broke her hip, that was it. Nursing home from 2001-2007. Read / re-read, it is so very helpful. Things you feel, wonder why my mom, why our family PLUS how to deal with caregiver fatigue. There was a “Senior Day Center” in Panama City where mom loved to go and do arts & crafts. A shuttle would pick her up and bring her home so my dad could nap, run errands, etc. Then she would come back, nap and it started again the next day.
Hi Debby….My Dad was falling alot too for a while. He has been in a Alz. Facility for almost five years. When he stopped walking and starting shuffling in a wheel chair, ,I was almost releived. I felt guilty for that, but at least he was less likely to break a hip of something. Have you noticed that your Dad has a different pain threshold than normal. I don’t think my Dad processes pain like normal, like things that would hurt me, he doesn’t even react. I wonder if that is normal for him.
My mom took care of my Dad w/alz. until she died. I know it’s hard but it is so important to let them live out this season in their life together as long as they can. Your Dad is probably scared to lose her but also overwhelmed. You don’t want him to have any regrets if she goes first. My mom fell and broke her neck and we had to disconnect life support while my Dad had alz. She wouldn’t have had it any other way. We all wanted to help her with Dad but she wanted to do it. They married for better or worse…all of that. Anyway, I have taken care of my Dad for five years now, so for my mom, taking care of my dad wasn’t a life long thing for her. My Dad is really hanging in there, even though he doesn’t walk anymore and has lost lots of his speach. Anyway, I just wanted to encourage you to let your Dad do as much as he wants to and as much as he can to he can feel useful to her. Hope this helps.
Dear Laurie,
My condolences. This is an awful situation however taking her to your summer home may disorient her
even further. That said, would you consider respite? This is a service offered by nursing homes which allows family members to get a break from care giving. Your mother would be cared for in the home and your father ( bless him) could have a break. I also wonder if it is good for you to be alone with such a dependent and wandering charge ( even if she is your mother). You need a break too. Have you looked into assisted living? many facilities, including the one my MIL lives in have several levels of care and there is help 24/7. Please do not think of any of these solutions as “abandonment”. Your mother is clearly unable to care for herself, your father is advanced in years and regular households simply do not have the facilities to care for such an ill individual. You can not do this alone unless you are prepared to spend every waking moment watching over your mother…Even then, it may not be enough… Good Luck.
My brother has been diagnosed with cancer Melatona he is in stage 4 he gets very confused and anxious at night. Is this a condition that cancer patients get?
Hi,My dear sweet aunt is 70 years old and was living alone until my uncle passed away at that time she moved in with her son.Everything was going fine and she got sick last winter and got really dehydrated. Since that time she has been put on a lot of medicine. I myself do not believe she has dementia but is way over medicated. She is confused about all of the medication she takes and sits and stares like someone over medicated. Some days she seems fine then other days she repeats things over and over.She says she doesnt know why she is like she is, so she realizes that there is something wrong. Her kids are so fed up with her which hurts me so bad. Is there a certain kind of Dr. I can try and get her to go to to check out her medication and see for sure if she has dementia..Thank you so much for your time and thanks from my sweet, sweet Aunt!!
Dear Edna,
Please see a neurologist, he can test her and test the medications. if she has a doctor apptment go with her, tell them the problem you see. Ask for a referral to a neurologist. Some people are what we call CHEAP DATES… that means, we need half the medicine doctors normally perscribe, ask the doctor is she can cut back on any meds, and yet make sure she is getting the meds she needs..
Edna, for my dad, we found him a geriatric specialist, who also sent him to a clinical pharmacist for a full meds review. You can ask the local alzheimer agency or senior center or other place like that for referrals, i would imagine. good luck!
to all, we now have hospice in, with my mother in law, but I wanted to thank the lady who worked with dementia patients in the hospital. she suggested Haldol, and when hospice came in, we got Haldol, all the depression meds did not help, the anxiety pills did not help, but Haldol did. I actually got to have a small conversation with her, it didnt last too long, but the yelling and screaming and night terrors have slowed WAY down. I think of all of you daily, my prayers are with you…
Lynda, glad the Haldol worked for your MIL. It didn’t help my dad unfortunately. Ativan is the only thing that seems to keep him under control, and now he is in the hospital after he attacked one of his caregivers. since he got violent, no facilities want to take him. still looking though. best wishes for much comfort for your MIL.
My husband has terminal cancer and is a confirmed Sundowner, has been violent on some occasions. He is currently an inpatient in Hospice but last night they called me to come help them get him back in bed. He is fast as greased lightening when he goes. He is going to be released out of inpatient tomorrow and I am desperate. We just lost $3200 to a facility and I don’t know whether I can find one that will take him, and we cannot afford it anyway. He’s on Ativan. I am just at the end of my rope. I am not a young woman and what we have been through is unbelievable anyway with all the complications of surgery that he’s had. He does definitely have dementia. He is weak as a kitten and sleeps all day, and fights demons all night. It’s an evil syndrome that’s for sure. He would never in a million years want to be in this condition.
Donna, my dad is in the same situation, with the dementia part. He is in California. After he got violent, he was evicted from 2 places. We had a really hard time finding a place that would take him. I would recommend you contact A Place for Mom (www.aplaceformom.com) and get a representative helping you (it’s free to you, as the facility pays them). They are experts on finding people in your husband’s situation places to be cared for long term or short. Ativan doesn’t work on my dad. They seem to use a combination of Haldol, Cymbalta and restraints when needed. It’s very sad. We got him into hospice too, at the one skilled nursing facility in California who would take him. It is several hours from where he had lived for the last 30 years, so no one he knows lives near. He wants to die (he doesn’t have a terminal diagnosis, other than the dementia). He also is weak during the day, but can hop up from the floor to the bed and back at night somehow. Best of luck to you!
medicines…. the right ones work wonders… HALDOL.. granny was screaming all night and day.. night terrors all day.. i was crying she was crying.. drugs.. hospice came in and saw what was happening, and said.. HALDOL.. given correctly for 3 days i started to see a difference… it was easier.. then LACUTLOSE.. pulls nitrogen from the system.. and she was almost sain again. if you have hospice ask about these two.. and she gets morphine for pain, her skin hurt every time i touched her.. so she still talks but can answer questions again.. get the right meds.. good luck.. lynda
lactulose pulls amonia.. from the body.. sorry.. haha.. sometimes we are not perfect… and its ok..
My mother is 91 years old and still in good health. My bother thinks she has sundowners but I think she just wants to move in with one of us. My husband and I just retired and travel alot so there is no way we can take care of her. We all have families to take care of. She does not want to go to a nursing home but can’t afford an assisted living. She is only scared in her home. When she goes to my brother’s or my house she is never afraid at night and is perfectly fine in the evenings. Do you think she has sundowners?? MMM
My Mother is in a nursing home and she said the lady next to her has been doing weird things at night, like accusing her of being her daughter, blocking the nursing home doorway with chairs to keep the children. My sister was told that this lady has sundowers syndrome. Now that I understand what it is I will be more understanding and listen to what Mum says happens. When you are 97yrs with a wonderful memory it is very upsetting, I will be having a word with the nursing home aout her relocation.
Hi,
I am new to this site because I never heard about sundowners until about midnight last night. My 87 yr old mom is in the hospital after having a “mini-stroke” 6 days ago. She also has stage 4 caner (breast cancer in the spine) and heart problems (now on a monitor). She called me last night terrified of the nurses, thinking they were all smoking in her room (not true, of course). She had a ct scan, which did not show anything, so the doctor said it was probably sundowners. She has not had any form of dementia, as far as we know.
She has been living on her own until now, but tomorrw we are supposed to move her to an assisted living (not skilled nursing) facility, and I don’t know wherth or not she would be able to handle it. I am worried that she will wake up in a strange place and panic without anything familiar there at first.
Since I am so new to this, and comments or suggestions?
Hi Mary,
It seems like this Sundowners Syndrome hits everyone at some stage, it is very confronting and upsetting to see your loved ones act in this way. I am the primary carer for my mother-in-law and have been through lots of episodes. My mum and I are dealing with lots of problems and try to put them into stages, it helps us to deal with all of it easier. I have found if I put the light on before it gets dark this seems to either prevent or slow the sundowners from comming on. It is worth a try, also I have tried to limit sugary foods and alcohol.
My mum has Parkinsons as well, and any change at all can onset Sundowners, so keeping routine is a big key too. Hope this is of some help, all the best.
My Dad has been in a assisted living for memory impared folks for almost five years. At first, he was a litle disoriented. The staff should know how to help him make the adjustments. It takes a little while, but from what I’ve seen, the women sometimes enjoy being with each other and make friends. You stay strong, and be patient, you are doing the best thing to help your mom.
Can someone with Chronic Fatigue Syndrome and Fibro suffer from Sundowners? Or is this a new problem I am having?
my mom had a stroke in may. we were lucky that she had it in a place in her brain that did not cause her to lose her voice and she is capable of walking and getting around. she has care givers and my sister and myself, plus a couple of wonderful cousins have been helping out. mom seems to have no idea that we are the walking zombies. i am afraid that she is getting sundowners. my mother in – law had it and it was terrible for everyone. she has trouble bathing and dressing herself. she HAS to be assisted. she is always saying that we are “doging” her ever step. well, we have been warned by the doctors and the nurses that she must not fall since she is on blood thinners and could possibly die. we try to give her as much privacy and independence that we can. mother is a terrible patient. she has never been ill so this is all new and scary for her.
I just wanted to update everyone on my mom’s move to assited living a week ago today.
As I said, she is 87, and had a mini stroke 2 weeks ago. On 4th of July, she had her first (as far as we know) sundowner symptoms. She also has breast cancer gone to her spine, and heart problems. Up until now we have worked our tails off to enable her to live in her own home, thinking it was best for her.
Well, I cannot tell you the change in my mom since her move to assisted living. She is LOVING it! She looks better than she has in years, has had no more issues with sundowning, is eating 3 square meals a day with her new friends, is going out for walks around the facility. She also feels like iniviting her old friends over for lunch now that she does not have to prepare it herself. She has plans to go to the movies, a baseball game, and a play.
I just wanted to post this because alot of us think we are doing the right thing by working our tails off to keep them in their homes, when in reality they are almost prisoners there unless we are with them. Now when we go to visit her (everyday) we are not exhausted. We are not caring for her or cleaning her house, we are there to actually just spend time with her. It has been fantastic.
Greetings everyone. What an interesting site. I had never heard of this term “sundowner” until I researched “waking up disoriented at night” on Google. My dad is 88 and in very good health heartwise. His problem is waking up disoriented on occasion. He will tell us there are people in his room and swears he has seen them. We were almost inclined to believe he was experiencing paranormal activities but he has also told us he has seen bugs, snakes and other creatures in his room and that they have bitten him. He does his best sleeping early morning until around 11 AM. When he awakes he is usualy fine and alert. He is generally well during the day and until he goes to sleep. He is totally self-sufficient and able to recall events from years ago and never forgets names.
He did have two blood clots in the brain removed about five years ago which we believe resulted from a fall and suffered a mini-stroke last year which we alsao believe resulted from a fall out of his bed. He takes around 9 medications everyday and doesn’t eat what I would consider enough food for all that medication. I wonder if all that medication and not eating right would bring some of these symptons on. He does take diabetes medication and the powerful blood thinner “coumadin,”
When he was in the hospital after the last mini-stroke he was very belligerent with the nurses at night and would call the house during the night telling us to come and get him because they (the nurses) were trying to do him harm. Again, during the day he’s normal and acts as if nothing is wrong. When he was released he had nothing but nice things to say about the nursing staff. He does remember his episodes from the night before and swears there are people and things in his room.
This is not a nightly occurence as he has many nights that he sleeps all the way through but it’s become more noticable and the pattern I see is he’s having these problems from the time he goes to sleep until the 3 to 4 AM hours.
My dad has lost a lot of weight in a very short period of time and will not eat. He has gotten very fraile and has trouble walking. As of mid-July, 2010 he has started to sleep most of the time saying that he is tired. As a result, my mom has Home Health care over a few times per week. Currently, he gets up several times during the night to go to the bathroom and has fallen twice. So it is impossible to leave him alone at any time. Since I have been here, I have noticed that he seems confused several times during the day but at night he calls several names and when you respond he asks for you to get him ready for bed (he is still calling another persons name). He is already in bed but he wants to be prepared for bed. Additionally, if you attempt tell him you are not the person he is calling he says that you are, and then asks why are you being so mean. What should I do? My mother has some health issues as well so it is impossible for her to care for him 24/7. Any ideas where I start trying to get him care?
Just wanted to say thanks for all the informative posts. I just learned yesterday that my grandmother, who suffers from a progressing parkinsons disease, is suffering also from sundowner syndrome. I was informed Friday she was admitted to the hospital and diagnosed with a heart attack, her second one. I believe some of the symptoms described here we related to the parkinsons. The hospital staff had called us to come back to the hospital as my grandmother was uncontrollable, kicking-cursing and hitting the staff trying to calm her from ripping out her IV’s. She is never like this and I was upset and suprised to hear this. She claimed the nursing staff were conspiring to kill her and it is hard to see her like that, scary even. I hope the diagnosis can be treated on top of the parkinsons disease treatments as mixing medications is always risky. Thanks again for the posts
Hello, new to this site. My 40 yr old son, 6’2″, avg wt., college grad, handsome, recently (3weeks) became a non-drinker, past few yrs was a heavy drinker, has been experiencing symptoms similiar as those described as sundowners syndrome. In the morning he’s the nicest guy you ever wanted to have coffee with and is pleasant and articulate through noon until late afternoon/early evening. At that time he begins to get anxious, somewhat irritated, volume increases, eyes become somewhat glassy/dilated. (We originally attributed this behavior to sneaking drinks but are now doubtful). In conversations regarding symptoms, he reveals that his mind starts racing and attempting to cover a myriad of subjects. A recent conversation concerned the many head injuries he has sustained over his lifetime as a result of normal childhood play and other activities. Recently he experienced 2 seizuzures with convulsions which were attributed to alochol withdrawal. The last seizure resulted in a fall that caused a consussion with associated vomiting. Your thoughts would be appreciated.
Wally, I am very sorry to hear about your son. 40 seems way too young to have to be going through all this. All I can contribute is that my dad (72) was a super heavy drinker and drug user from the 1960′s through early 1990′s. He also developed Parkinson’s. He also had a stroke in 2008. I think the dementia was creeping in before the stroke, but it became more noticeable after it. This April we had to place him in skilled nursing because he progressed to a violent combative state. The first I heard of the sundowner’s was when they told me he had it in rehab after his stroke. He would become angry, paranoid, vulgar, agitated, combative, remove all his clothes, etc in the afternoons and evenings. The man never exhibited a racist bone in his body, until this kicked in. Then everyone was suspect that wasn’t caucasian. He would have times when he thought he was the sheriff and would need to incarcerate people he was living with, asking them for their i.d., etc. It is awful to go through, and scary to deal with at first. I suggest you read the book The 36 Hour Day. It will tell you everything you need to know in dealing with someone with dementia, delirium, all that. Good luck.
Dear WallyK
I realize that several months have past since your post about your 40 yr old son. Have you found any answers? I am on this site because I have some similar symptoms as you described. I have been diagnosed with Post Concussive Syndrome. After falling and hitting my head, I immediately had convulsions causing me to hit my head repeatedly on the floor. My situation did not result from drinking or not drinking but the result of the fall and head injury could have the same result. I too am pretty good in the morning but my mind races and I talk really fast because I am trying to get everything said before I forget it. Post Concussive Syndrome causes memory problems and brain fatigue which can be very frustrating. I don’t always know that I am doing it. You may want to google it to see if this may give you some answers. I am lucky to have a Chiropractor Neurologist that caught it right away. A chiropractor neurologist is different than a chiropractor. They have to pass the neurological boards. Good luck and I hope it is only temporary.
My wife’s family on her mother’s side has a history of Alzheimer’s disease. Aunts, uncles, brothers have all contracted the disease, some at a very young age. Her older brother, 65, has been in a nursing home for 2 yrs. My wife is now 52 and is beginning to show symptoms of degeneration in the form of fogetfulness and Sundowners syndrome. I can deal with the forgetfulness, but dealing with the personality changes due to Sundowners is becoming unbearable. I try to keep in mind that her mean spirit is a function of the oncoming disease, but it’s not easy to keep things in perspective when you are being verbally attacked. The following morning, she says she doesn’t remember acting that way, but that is little consolation to me who has to put up with it.
I don’t know what to do. She is becoming less of a wife and more like a child. She is on medication, but it does little to prevent the episodes of Sundowners. Her psychiatrist will not speak to me due to privacy issues. It appears as though she is just a pill dispenser. My wife is not very cooperative as far as wanting to do something else about this. She is afraid of what is coming and would rather hide her head in the sand.
I need a support group where i can not only vent, but learn about ways to better handle the situation. Anyone aware of any support groups in N.E. Ohio?
Ron
Ron, I am so sorry to hear about your wife and her family. Very scary and sad. If nothing else, read The 36 Hour Day book, which I believe shows as recommended if you scroll down to the bottom of the page. It will help you deal with how she acts toward you. There are things you can say that will help, as well as make the situation worse, so you want to educate yourself as much as possible now. I hope she changes her mind soon about getting more help, but if she doesn’t you have to do what you need to do to keep your own sanity too. I hope it doesn’t get completely unmanageable, but if it does, you will need to make some tough decisions about living arrangements. I had to do this for my dad when his dementia and sundowners caused him to become violent and combative. We took him out of his home this April and placed him in assisted living, then he got too hard for them to deal with. We placed him in a heavier duty assisted living, then he attacked a caregiver. We finally found a skilled nursing home that would take a violent big man (very difficult to place, no one wants to risk it). He’s been there since June and is now in hospice mode. They have his meds managed and can handle his combativeness. It’s been hard, but I was left with no choice. I hope it doesn’t go this way for you. Trust in God, He will open the doors for you if you ask for His help. Best of luck to you.
Tammy-
Thanks for your comments and suggestions. I hate to sound like a whiner because i know that so many of you have been through so much worse. i hope my experience is better but am not counting on it. I will buy the 36 Hour Day. Thanks for recommending it. I am still looking for a group where i can vent or talk things out. This site is great, but it’s still not the kind of personal interaction i need. However, i am so grateful for all your input and hope to hear more.
Ron, I hear what you’re saying but I’ve behaved like that since day one of my marriage with my husband at age 25. Is it that she’s having personality changes? Is it that you’ve had a lifestyle change and now are more sensitive to her words like never before? Sometimes churches have support groups. I can tell you that I act like a nut job w/ my husband most of the time because I feel unhappy due to a variety of reasons. When for a while I wasn’t acting like that, when for a time I felt content and happy, he went and had me committed to a mental hospital saying I was acting weird. So now I’m back to being ugly to him until I can get out of this marriage and get away from him because I shouldn’t be put in a mental ward because I’m happy and it spills over into my home life….I was happy because I finished my training and was hired on at a great job. I felt glad that I was useful, and able to contribute financially. I started going back to church at that time and reconnected with friends, the whole gamut and it clearly freaked him out that I went from angry, isolated, inconsolable, and mean to sunny, friendly, wealthy and a social butterfly within a week of getting hired. Time to find a guy who has a brain and is more sensitive. He made me lose my job and my license over that mental hospital confinement which was for no reason other than he’d never seen my happy and fulfilled and enjoying my new status in life rather than bored, bored and bored and bored.
Ron,
This website was the biggest help to me, because it is available 24/7. Sometimes I and some others would be on here at 3 a.m. venting. You are not alone. Even though my 95 year old mother-in-law passed in May, the memory—and the guilt—is still very fresh. In hind sight I think she would have lived longer staying at home. (she was in a good nursing home for 6 weeks before she died) But after years of progressive illnesses, she was very hard to care for, and I and my husband were exhausted. IF YOU CAN, get as much help as you can. Sitters, family, neighbors, home health, anyone who will give you the chance to get away and freshen your perspective. You will need to find a way to some peace. I found the love I had for her, which I thought had compleletely been destroyed, has returned and I find myself remembering some of the good times. But I hit bottom pretty hard before that happened. Maybe this will not happen to you–feeling desperate and nowhere to turn–but if it does, it will pass and when you can bear no more, a solution will come to you. We all cope as best we can and I have seen incredible strength–I have an 87 year old friend who cares for her 85 year old sister–with all the love and tenderness after 10 years that she had the first year of care. She is a strong angel, and was the person I strived to be like, and fell short. God bless you and other caregivers–forgive yourself and your wife–she really doesn’t know what she is doing. Google alzheimer’s support–I think there is one in Wheeling– too far from you?
Brenda-
thanks for your response and empathy. I know i’m not the first nor will i be the last person to go through this but truthfully, that is little consolation when it is happening. It’s sad no matter what age the person is, but especially when that person is in their 50′s as is my wife. I need to pray harder for me to become a stronger, more accepting person since this is really only the beginning of the process. It would be nice to have others to talk to at those times when i’m feeling overwhelmed.
Wheeling is very far from the Cleveland area. I’m hoping to find a local group. If anyone knows of such a group, please let me know.
Hi.
My husband whi is 83 yrs old has been suffering from Advanced Dementia for about 3 yrs now that we are aware of.. I took cae of him for two yrs until I could no longer do it anymore. I swore that as long as he knew who I was he would never go to a nursing home. I couldn’t keep that promise and I felt like i threw him away. I know thats not the case but I feel like I failed him. He has many medical problems such as Conjestive heart failure,diabetis,seizures that are now under control, and stage 4 kidney failurs for three yrs now. He has no pain and for that I am gratefull…I visit every other day and I am exhausted as I have Arthritis and a very bad back.. I also suffered 2 strokes, one being about 3 weeks ago. I am now on Plavix. I know now that I have to watch the stress for myself. My husband knows me and soemtimes says he wants to come home. He no longer knows wehre that is except its a place where I am and he wants to be with me. He is in a nice place and they call him “The Captain ” as he constantly tries to tell all the aides what to do and when.. I never thought my husband would live as long as he has with 2 by-passes and the kidneys as bad as they are. I was told bt the kidney docotr he is not a canidate for dialysis and when the kidneys fail they will let him go. I was told he should have been on dialysis 3 yrs ago and he is not. I pray every day the Lord calls him home as this is not a place where he should live out his life. I feel so quilty that he’s not here with me. When and if I know the time is getting close I want him home with me and Hospice so I can hold his hand as I did my mother when she passed. Sometimes I don’t even know if the Lord hears me anymore..
Shirley
SHIRLEY, THE LORD HEARS YOU….THERES ONLY SO MUCH HE CAN DO.WE ALL PLAN THE LIFE WERE GOING TO LEAD AND THE CIRCUMSTANCES OF OUR DEATH…WAY BEFORE WE COME INTO THIS LIFE.DON’T FEEL GUILTY,HE’S WHERE HE CAN GET THE BEST CARE.YOU HAVE DONE AN AMAZING JOB,CARING FOR HIM AS LONG AS YOU DID.I DON’T WANT TO END UP IN A NURSING HOME EITHER, BUT I’VE TOLD MY SON,IF I’M UNABLE TO CARE FOR MYSELF AT SOME POINT,DO WHAT YOU THINK IS BEST….NO GUILT!LIVE YOUR LIFE,MAKE SURE THE PEOPLE YOU LOVE, KNOW YOU LOVE THEM, AND CARRY ON.WE’LL ALL MEET AGAIN ON THE OTHER SIDE,SINCERELY,KATE
Kate: I think that most of your reply is very nice and supportive, however, I must disagree with your statement “There’s only so much He can do.” That is certainly NOT true of my God! I am sure you didn’t mean it that way. Of course He can do anything and everything, according to His great plan.
My grandfather has been going downhill for a few years now. It started off simple, with him repeating stories, which wasn’t so bad, but as it got worse he began shifting from repeated stories to repeated questions amongst other problems. In this last year is where things have really gone downhill, during this time he has started to become EXTREMELY attached to my mother (his daughter) to the point where she can’t even leave a room (even if she tells him she’ll be right back) without him either yelling out her name or getting up and chasing after her just seconds later. If I try and reason with him to stay sitting in his chair, or try reminding him that she’ll be right back, I will be met with: a hateful glare, a hateful comment, a hateful gesture, or a combination thereof.
He’s pretty well confined to having to use a walker because of how weak he is, yet he still gets up and wanders off without it a lot of the time. We try to get him to build up his strength with food and drink, but he flat out refuses to eat most of the time, assuming he might gain a whole pound if he does. And if you manage to get him to take the food, he will usually only take a couple bites and chuck it in the garbage. This is extremely frustrating because he always decides he wants to ‘go for a ride’ and ‘pick something up to eat’. So basically we end up wasting money on both food and gas for the car.
It’s to the point where the only thing he eats willingly is oatmeal. However oatmeal lacks so much in nutrients that despite filling his belly, it still leaves him weak.
This all wouldn’t be so bad if not for the fact that he has become extremely hateful over these last few months, and I seem to have become his prime target for directing it at. Every chance he gets to sass me or to put me down, he takes it. He even went so far as to ruin my birthday the other day out of spite, which hurt me greatly. It’s really hard for me seeing as I used to get along with him so well, listening to his stories and so on. I feel like a puppy being kicked around in the street.
It’s also particularly stressful for me considering how much he has attached himself to my mother. It’s so stressful because my mother is extremely important to me, and it kills me to see her pushed around so much. For the past 18-19 years of my life, my mother has been taking care of family. First my grandmother (grandpa’s wife) who, despite being disabled physically, was extremely sweet and loving personalitywise. About 4 years ago she died. Promptly after that my father was diagnosed with kidney cancer and died 6 months later which tore my mother to shreds emotionally. Following my father’s death, my grandmother from my other side of the family began the downhill spiral of dementia which ended a little over a year ago. Despite how stressful the time with that grandmother was, I can’t help but notice that even she was easier to deal with than my grandfather now.
If you could possibly give me any tips for how to deal with this, I would appreciate it. I’m just at my wits end and don’t know what to do. I find myself crying practically daily anymore.
Karen, please read the 36 Hour Day (it should be showing at the very bottom of this page). It will help you deal with the difficult behaviors and the hurt they have and will cause. My dad is the same way, but he got really combative and violent so he’s in skilled nursing now. He does much of the same thing. If your gp is wandering, on top of all the other stuff, i think it might be time to consider a placement outside the home, if that is an option. Best of luck to you and your mom!
My dad has dementia and after dark gets very combative and cannot remember what when on today or yesterday. The next day he can recall things that he did the day before but very little of the night before. He sleeps until 11am every day, is 87 yrs old, lives alone after being married 60 yrs. and lost his spouse 3 yrs. ago. Still mourns and cries about her each day. He is on meds , however , shows continued degression.
Just found out, that my mom, might have sundowner’s syndrome that I had never heard of before, until a friend of mine mentioned it. My mom is in a nursing home, and it seems at night she is usually confused. She has a bad kidney infection, and she needs dialisyis, and she is 85 yrs old. She will forget where she is, she says things like, where am i? Is this your house? Where we going? When she was in the hospital she did this, but she said that she left the hospital, and she went to the nurse’s house, and how pretty it was-boy that thru me for a loop?! All these things seem to happen at night time. She will always have infection because of the UTI, and bad kidney problems. I never knew, that an infection could cause so many different problems with the memory. My mom has been sick since september, and it has been a long haul. Im still trying to grasp everything.
We deal with korsekoph dementia and it is awful the calls we get at night.
some from the dementia and some from the “medication vodka”
we say he sleeps all day to bother us at night
we laugh but it is not funny and you get no help
If someone can dress and clean and cook, then they are ok I guess
Tell me that at 2 am after about 20 calls.
Lila, tell me about it!! I think the phone calls in the night were the very worst part of my dad’s situation. The other stuff I could deal with a lot better than when they would call me, and THEY were scared because he was walking down the hall naked telling them he was looking for a weapon so he could hurt them. So glad those days are over for him. He would have been horrified if he knew he was acting that way too. Dementia and the like can be so very cruel. Good luck to you!
My father-in-law was recently diagnosed with dementia. He has fallen twice at home and both times couldn’t get back up or walk without help. The second time the dr. decided to keep him in the nursing home. He is 81 and lost his wife in April of 2010. His confusion didn’t start until after the 2nd fall. It’s mostly just getting the time of day wrong, am vs. pm, which we thought might be normal since he’s not near a window. But once or twice he asked for his wife. He can get dressed on his own but the nursing home and dr. suggest assisted living. We’re waiting for a room right now. My problem is that he seems so normal 90% of the time and I’m worried that we may be ‘committing’ him prematurely. But the nurse has told us that he gets undressed and dressed 5 to 7 times during the late night, and sometimes wonders the halls. I’m conflicted on keeping him in the home and after several months, selling his home. We have seen 2 attorneys and they both agree to selling his assests to pay for the care.
Sharon,
I agree with the attorneys. Assisted living is really pricey, and you probably already know that medicare/medicaid do not cover most places. Medicaid covers approved skilled nursing facilities. If he is a fall risk, it is sometimes harder to place him, as many assisted living facilities are for the more ambulatory folks. Of course, the cost goes up the more help they need. If he is wandering too, he may progress to the point of needing a locked facility. You have probably already discovered that it is harder to place men than women. I will suggest to you the same stuff I suggest to a lot of people on here: 1. Read the 36 Hour Day book (see bottom of this page). It covers all aspects of caring for someone like your FIL. 2. Contact A Place For Mom online or in your area. http://www.aplaceformom.com/ Their consultant will help you for free and will be experts in all the available places in your area. They were of supreme help to me with my dad’s situation over the last couple of years (which you can read about throughout the various threads on here). 3. Contact the local long-term care ombudsman in your area. They have great resources. 4. Make sure you are familiar with Medicaid guidelines about selling assets and stuff, if you ever think there’s a chance he will need government aid. They have some pretty strict rules, and the documentation requirements are tedious and lengthy. You will have to go back 30 months from when you apply, so keep EVERYTHING. The senior consultants mentioned above can help you find someone (or they may be able to help you themselves) who can help you with Medicaid (Medi-Cal in Calif.). 5. Call on the Lord for help, and pray without ceasing. My faith is the only thing that brought me through my dad’s time. Don’t feel guilty about the choices you will have to make. You are not “committing” him, you are finding him the care he needs. Sometimes there isn’t a right choice, just a best choice. If he is already wandering, dressing obsessively, and thinking his wife is still alive, you are most likely not acting prematurely. Especially if his dementia is of a progressive nature. It can move quickly, so it’s best to act now, like you are trying to do. My dad went from normal 90% of the time to not knowing who I was or caring about the future in a matter of a few short months, then he died another 4 months after that. His case moved quite rapidly, and I hope you have more time than I did. These diseases are so insidious and unpredictable though. Good luck to you! Call on us when you need support.
Sharon, I hope for your father-in-law’s sake you put him in assisted living. My mother, with dementia, who just died last month, went from a nursing home, where care was inadequate and she had nothing to do, into a beautiful atmosphere that kept her active and happy until the time she died. She was allowed to have FUN again. The aides were wonderful and took much better care of those who needed assistance as opposed to those at a nursing home who never even answered a call button. Just my thoughts. Give him some happiness!
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Mary, may I ask long your mother was in a nursing home and assisted living? Luckily my FIL just got moved to assisted living. He is confused right now, but also stays quiet most of the time. I do think the aides are great and realize that most of the time he thinks he’s fine and doesn’t understand why he had to stay there. No one knows how to explain this to him.
Sharon: After being over-medicated by docs, she was in a nursing home because she had stopped eating and was hallucinating, so they put a feeding tube in, which required the nursing home. She was in the nursing home about three months until the feeding tube could be taken out, then back to assisted living for the second time. She then lived in assisted living for the next two years. She stayed quiet for a long time, also (maybe 2 months), then the next thing we knew, she was playing bingo, listening to entertainment, attending church services, and looking forward to every meal of the day in the dining room. Pretty soon she forgot the house she had lived in for 50 years and actually said more than once that she LOVED the assisted living facility; that it WAS her home. It was so hard leaving her there (but better than the nursing home) but after hearing her say that, we were comfortable and happy with our decision and her happiness.
And, if your father-in-law was a veteran, there is financial help available too him as far as his “care”. Because my mom was a wife of a veteran, she qualified for $1000 a month for care.
No, my FIL was not a veteran. Another stresser for my husband, having to handle all his dad’s bills plus looking into selling his dad’s house in the next few months to pay for his care. But this morning my FIL was found on his bathroom floor after taking a fall. He is ok now,but still no one knows why he falls. So sad.
I am so very glad to have found this website, for 10 plus years now I have had so many questions about Sundowner’s, which no one could really answer for me. After reading comments, posts and thoughts, I feel as if I finally got the information I so desperately have sought since 1997. My story started similarly with my great Grandma when I was in my late teens, she went for a routine heart exam, was disgnosed with some congestive heart failure and admitted to the hospital. Up until that day, she was making food for herself, cleaning house, talking on the phone and paying her own bills (at age 94). After she went into the hospital, she developed Sundowner’s, which began as confusion with the time of day and progressed to forgetting our names, and where she was. She began thinking she was being put on the roof at nighttime, and thought it was 1940 -conversing with a long ago deceased friend. I asked the doctor who took care of her, and some nurses about this syndrome and never could get a straight answer. They simply told me things like “it happens with the elderly” and it is a form of dementia, etc..” I spent some time researching and reading books, but hadn’t encountered anyone else who’s relative had had Sundowner’s and Alz. occur like this. This website has been a true blessing to me not only by answering my questions, but letting me know I was not alone with what I thought was a very unusual situation.
Sharon, I hope for your father-in-law’s sake you put him in assisted living. My mother, with dementia, who just died last month, went from a nursing home, where care was inadequate and she had nothing to do, into a beautiful atmosphere that kept her active and happy until the time she died. She was allowed to have FUN again. The aides were wonderful and took much better care of those who needed assistance as opposed to those at a nursing home who never even answered a call button. Just my thoughts. Give him some happiness!
This site, is a prayer answered. About 2 years ago, us siblings, notice some changes in my dads behavior and memory struggles at the age of 88. The real shocker was 18 months ago my dad and I cut down a tree in his yard , he has wanted to cut down for 2 years . I did all the cutting and dropping the limbs down to the ground , as he hauled them to the driveway a few feet away, and trimmed the small limbs off the branches and he stacked the branches. The next day he woke up to see the tree cut down and asked my mom who cut the tree down , and was very angery. I came over that am to grind the stump . As i walked into their house, he was standing by the window looking into the yard. He turned to me and stated, who the hell gave you permission to come into my yard and cut my tree down. I was shocked and confused. He got into my face, clinched his fist with anger. I said to him. You and mom wanted the tree cut down dad. He stated the hell I did. This caused me to stay away from their house for almost 2 months. Me living only 2 city blocks from their home was ideal. I could be there for them anytime they needed me. I shut down after the conflict with my dad. He was taken to his doctor days later to lean, he was suffering from dementia. Up to just 7 weeks ago he was mostly managing to do things on his own with the help of my 84 year old mother. He walking on his own , doing dishes. letting his dog out and other things. He would wake up in the mornings asking my mom where he was. thinking he was in a prison camp and very confused. 7 weeks ago he was admitted to the hospital for back pain, which made it very hard for him to get out of bed and walk.. In the hospital he was very combative and verbal to the staff , thinking he was at home and they were in his house. he would not sleep but maybe 1 hour durning the night. My dad, a laid back person , never hit, swear or disrespects women. was doing it in the hospital, even striking out at my sisters. He was given meds to slow his behavior down which worked sometimes. After 4 weeks he has now been in a nursing home going down hill. I wore my work shirt with my name on it everytime i go to see him. He knew me every time , until 3 days ago. I walked into his room as a CNA was changing his shirt for him , I said hi dad , and he turnned to look at me and stated who are you. I said your son dad , and he said you look like Binladin. May I add i don’t even have a beard. I told the CNA I will come back into the room after she was done with my dad. He was asleep 10 mins later after i entered the room. when he woke about 45 mins later he saw me, was confused , but smiled and said great to see you. I see in him, alot of what i have read in this site. He does have begining stages of parkinsons. I noticed yesterday. I stopped at McDonalds to get him a breakfest tray. He had problem holding a fork, getting the food into his mouth, and hard to lift his cup, And hard to swallow his food. For some other reason he likes to take his cloths off during the night, and try to get out of bed. Now he is in a bed that has a concaved mattress with high sides and the bed is lowered to floor so he can not get out or even sit up, to prevent him from falling. He is now wheelchair bound, and very confused. He knew who I was yesterday. Today I don’t know what to expect when i go there to see him. Again i will get his favorite food, at take it to him this morning. It is very hard to see anyone go threw this. I ask God to take him , before he suffers more. I want to hold the good memories, which are very strained seeing my dad like this. I want to thank all of you who have shared your stories on this site. You are a blessing. You have given me some comfort in understanding this sickness…
Now that, Keith, just broke my heart. Make sure he is not over-medicated, which happened in my mom’s case. She went from the ability to feed herself to not being able to after a hospitalization where she was loaded up with unneeded drugs. After another hospitalization when she was weaned off those drugs, she was again able to feed herself. This truly is the most disturbing disease in the world, and to have to watch our parents go through this is horrific. My heart goes out to you.
Mary , Christi, Tammy and Brenda… Thank you so much for your replies to my post. Yes it is a very hard struggle, to see my dad go threw this. Mentaly , I am a train wreck.
Keith I can relate to your story. My dad will be 88 in about two weeks. He has had Alzheimer’s for about 10 years. The last five have been a very slow steady decline. I admire you showing up even when he doesn’t know you are does things that don’t make sense. My brothers have a real hard time seeing our dad like that. He lives in an assisted living for those with memory imparement. I live about 70 miles away so I go once a week and make sure he is cared for. He is getting awesome care and we will keep him there until we no longer have the funds to do it. Then it will be nursing home. I pray that God takes him before that but you know I believe he strenghtens us for every stage of the journey so if we do have to move him, we will and the really good thing is that this is so much harder on me than it is on him. That is the place that I have to go when I get down about it. I have to remember that he is not suffering. He doesn’t remember that I have been to visit him five minutes after I am gone, but I remember. Stay strong friend and keep the faith in the one who is in control! His plan is best
Keith, wow does your dad’s situation mirror my dad’s. I am so sorry. I know you will never forget the things he said and did, and may continue to do. That hurts a lot. I was spared a lot of the interaction you are facing because I live in another state, but the phone calls would come in the middle of the night (I was my dad’s power of attorney, even though I wasn’t nearby), telling me he was threatening people, attacking people, naked, etc etc. Sometimes they would even tell me they didn’t know what to do, like I knew what to do either? By the time we found a place that was willing to take him, he was ready for hospice care. My dad’s illness progressed pretty slowly the first year and a half (although he had Parkinson’s since 2000), but in April of 2010 it really ramped up to much of what your dad is going through. My dad passed away in late October, but it was a blessing because he was suffering so much. I wasn’t able to speak with him the last 4 months of his life because he couldn’t do a phone conversation anymore and didn’t even realize he had a daughter. It is truly tragic what these diseases do to our loved ones. I especially found it hard to see the changes, like you said about how he was laid back and all that. My dad was never prejudiced but soon thought any non-white caregiver was a criminal or a communist. Keep holding on to your faith in God. He is the only thing that led me through that miry swamp, and He will continue to do the same for you. I had to rely on Him for every decision, every day, and there were many times I had no idea where He would take things. But it’s over now and my dad is with Jesus. Best wishes for you and your family. If you haven’t read the 36 Hour Day (see bottom of this page), I highly recommend it.
Keith, your recent post of Jan. 23 brings back vividly our caring for my mother-in-law. She passed away in May after staying with us for ten years, minus the last 6 weeks in a nursing home for swallowing therapy. She had refused to eat, drink, sat with her eyes closed all the time, did not know us, was hostile–all your dad’s symptoms. On the day we were going to sign the papers to bring her home she passed to the other side. It may not be a comfort to you now, but I can say this: God will not give you more than you can bear, and when you can bear no more, He will take your burden. He did for us as we were franticly trying to figure for the umpteenth time how to help, what to do. I know exactly where you are, having been there myself. You are a good son. You do all you can. God bless you and give you strength and peace. You have many people on this support line who send out their good wishes to you and your dad.
Hi Keith,
We saw my husband go downhill and my son can’t even remember the way he was after seeing him decline so far. He was such a handsome, rosy cheeked man with soft brown eyes. He died after a year, never complaining. Everyone has their heartaches and trials. So sorry for yours. I just put the last valentine I gave him on the mantle.
Keith.
I too am caring for my father with alzheimers. I took care of him in our home after my mom died and it became too hard to handle. He is now in a nursing home. It has been six years since my mom died and he keeps declining so slowly. I try not to expect anything and ask God to prepare me for where my Dad is that day when I visit. I do love on him when he will let me. Sometimes he doesn’t want to be touched. Sometimes he won’t let me go and wants me to sit by his bed for hours. It is heartbreaking and it bothers me more sometimes than others. I am thankful for each time I visit though. I am thankful that I can serve him in this way. I know he wold not have wanted to be a burden on me, that was the kind of man he was. So, now I can serve him and he doesn’t worry. His needs are simple now. I wash his clothes. He is bathed, fed, and changed by the staff where he lives. He sleeps about 6 to 7 hours a day and all night too. One day this season will be over. I don’t know if I will be sad or if I will be thankful that he is in heaven. That’s all for now. Stay strong
Does anyone have an experience with driving issues? My FIL has had issues with getting AM and PM mixed up and has gotten lost as a result of driving in the dark (both places he was driving to he was unfamilar with). He seems to have worsening symptoms in the evening. He lives in a very small town and we live 3.5 hours away, so it makes it very hard. We took over his finances 1 year ago because he had a huge mess. Now, we give him a monthly stipend for groceries, etc and pay his bills. Every 3 months or so, he complains to ppl that he doesn’t have any money, where in fact he has 600% more than he did 1 year ago. I sent him his balance monthly via a letter in the mail, but I don’t think that’s enough.
We’ve had him stay with us for extended periods of time, but we have 3 children (2 elem + 1 high school) and it’s so very hard for me to care for him + be a mother to young children + work. Sigh…it’s so hard.
He has been diagnosed with dimensia / sundowners and seems to be progressing. He refuses to take the medication the Dr has prescribed that may help him with his memory (at least in the short-term).
I am not taking care of my mother, father, nor any relative of mine. However, I am caring for a sweet lady from my church who has Alzheimer’s. I was asked today if she suffered from Sundowner’s syndrome and that is what brought me here. I have been taking care of my patient for almost 3 years now. My partner and I live with her 24/7. I do get a break on the weekends when my daughter comes to relieve me. I am positive after reading the comments on the website, that she does indeed suffer from Sundowners. She gets scared in the evening, tells us she doesn’t like to be alone, she asks to go home, and will not eat a good dinner if we are in the house. She is on the meds for Alzheimer’s and they have added an antidepressant to help her sleep. We are up atleast every two hours every night. We have rails on the bed and a bedside commode. We keep a lamp on in the room for her. We have purchased a baby monitor that actually has the tv monitor, but now I never sleep due to watching her to make sure she is okay. She has had the spells with biting, hitting and spitting. She spent a week at a behavioral place to ween her off of some of the meds she previously was on. Over all during the day she is a whole lot better, but our nights have not improved at all. She has come through the living room with no clothes on and my boyfriend would just shake his head and then help me get her dressed back. She has truly been a blessing in my life in more ways than one. I intend to purchase the book The 36-hour day. I am so glad I stumbled upon your site. Each of you are in my thoughts and prayers. May God Bless each of you. This is certainly one of the hardest jobs I have ever had in my life, but too, she has taught me so much over the years. Oh how I will miss her when the day comes that I am no longer able to care for her.
Hi my name is LaGayla,
My mother was diagnosed with dementia over a year ago. I can not explain to you the huge change that has taken over. My question is when does dementia stop, and Alzheimers start. I realize that they are one and the same. But is dementia more mild, than alzheimers.
One year ago we were told the news, and today we fight to understand all that is taking our mother away. One of my sisters told me about Sundowner’s. I believe with all my heart that this to has my mother. She can awake at 5am, go all day. And when the sun goes down she has more engergy than sixteen mules. She is up all night, that is when she is most likely to wander off somewhere. Always looking for her home by the river. My mother has lived in the same home for over 15 yrs, and never has she lived by a river. My mother hides everything that is important to her, sixty times a day, in all new area’s. You spend, your day right by her side, watching everything. So you will know where to look for whatever. She reminds me of the Rabbit on the commerical it just keeps going and going. She will come up with the most off the wall stories, and your wondering how in the world could she even come close to forming that idea. Also one major issue with her is trash, my mother will put anything new, good in the trash. I can not tell how much has been lost for the very reason. My family is huge, my mother has nine kids. And yes, its hard to take care of one person, nine different ways. I love my mother, and my family. But one thing concerns me the most, how can you help someone to understand whats happening to them, how can you take away the fear they have, when they have been diagnosed with dementia/alzheimers….
Yes, the book 36 hours a day, I will be reading….
My boyfriend’s father is 85yrs old very healthy with drinking problem ,his wife died two months ago at nursing home from dimensia. He enjoyed his life without his wife because they had a very bad marriage.Last two months only thing he did was drinking and sleeping. Now he can’t even walk and has to wear diaper all day.He hired 3 young ladies to take care of him ,But since he sleeps most day from drinking,those ladies collect money from doing nothing. Now since they can’t move him around he started to have bedsore with filthy sheet since nobody can pick him up to change bed sheets. My boyfriend took him to veteran hospital,thinking they will keep him,but they sent him back by taxi after 3 days because he refuse physical therapy ,other than he is healthy beside weakness..My boyfriend though he could put him in nursing home with power of attorney.Then he found out medical decision is not included.Those 3 ladies take so much money out of this old man so much monthly,more than expensive nursing home.He doesn’t want to give up these ladies who are from church ,not even pro. We are stunt this evening. Those 3 young ladies will comeback again since he refuse professional help.What can we do. my boyfriend is a only child. How can we put him in nursing home. Now I am wondering how long this man can live with drinking and wearing diaper all day. By the way he felt few times last couple month.Any advice,please.
My Dad is 74. Over the past several years my Dad’s memory slowly began to slip. We didn’t really notice the beginning of it until now, as we began to think back. Over the past year it got more noticeable… the past six months was fast… and this last 2 months was a landslide! My dad lost “his” father (who had dimencia of sorts), then his best friend who was his younger brother Ron, and then the love of his life left him (not my Mom – they divorced years before). After that Dad was diagnosed with prostate cancer and at that time he chose laser treatments instead of chemotherapy… two years ago he lost his Mother who had alz…. last year he lost his grandson (my son) at age 28.
Keep in mind that my Dad has NEVER gone to the doctors unless something felt seriously wrong… so after the laser treatments for the prostate, that was it, he never went back. He never got his PSA’s checked. Anyway… he’s also diabetic, and about 2 weeks ago, he was slurring his words, complaining of being dizzy and said he couldn’t see right. My baby brother who lived 3.5 hours south told him to eat something. When Dad didn’t answer the phone ten min later, my brother called off work and drove 3.5 hours north only to find an ambulance in the drive… somehow, with a blood sugar level of only 27, he managed to dial 911 after falling and not being able to get up off of the floor.. Thank God for small miracles huh? So since then, we’ve discovered through a battery of tests that not only does he have gall stones, that his bladder isn’t emptying out completely because the urethra is fused with the prostate…. but the kidneys are also not functioning well, he was severely dehydrated and his liver is only partially working. The doctors said that his lack of a proper diet and lack of liquids could have caused a lot of this very recently – Now he is diagnosed with Sundowners. He gets very very confused at night and gets very combative, calling his sons the “enemy”, swearing at them etc… My brother’s just say things like “yeah I know, I’m a (&^%@#$, now work with me Dad”. He wasn’t like this two weeks ago!
We are all a mess!! He will be living with my brother in central wisconsin now – and he doesn’t realize he even has a home anymore, so that’s actually a good thing as he would NEVER agree to move in with anyone. The brother in southern Michigan went up for about ten days to help… he has gone back, now I’m going up from Texas to help for ten days…when I get back the brother from Montana will go out…and when he is done the one from southern Mich will go BACK up and use the last of his vacation… 2 reasons, to get “me” time with our father (who also has bone cancer in his pelvis)…and to help the baby brother who is saddled with the whole thing and not getting a wink of sleep!!
I want to thank you ALL for your posts!! I have written down the drugs mentioned, the 36 hour book that was mentioned as well. We are also looking into the veteran’s admin, his insurance, and medicare to see what can and can’t be utilized for in-home hospice. My dad loves us four kids…and especially the one who lives in wisconsin… and though we may not always be familiar to him as this progresses, at least we’re all familiar to him NOW… we will put off assisted living after all else is exhausted.
and no, the cancer will not be treated as it was against my Father’s wishes over ten years ago.
Paige
I think we are in the same boat…It is very hard understand what direction to go to help a loved one in this situation. My dad has sundowners very bad and the nursing home asked us if we can stay for 2 days to keep my dad awake during the day so he will sleep at night . Because the nursing home is under staffed on 3rd shift it is very hard to care for him when he is awake. He is wheel chair bound now and tries to get up all the time and falls. My sister is coming from Texas on the 12th of Feb. to try and work with my dad on sleeping at night.. It is impossible to try and keep him awake during the day, when he does not sleep at night . I have tried. He thinks the nursing home , is his house and yells at people , telling them to get out of his house. He strikes out at people there. He has very good days to where I can understand him clearly and feeds himself and other days wow a big change. It is a roller coaster ride. I never know what to expect when i go see him. Just keep your trust in God and work threw him . I may not have any answers for you but i want you to know , people do care.
Keith, have they suggested maybe getting him a geri-chair? they look like the one in this link :
http://www.scooterlink.com/index.cfm/method/product.details/id/convalescent-recliner-525/Winco-5251-Convalescent-3-Position-Reclining-Geriatric-Chair-with-Tray.htm
and many come with straps to secure them from getting out of them. i think you can even rent them.
when my dad became wheelchair bound, they got him a reclining wheelchair, since the transfers were really difficult and he never wanted to get into his bed. that might be another option, if they can secure him properly. he was also very combative, awake at night, all the same stuff. they just let him sleep in his wheelchair whenever possible.
maybe one of those, with the right combination of sedatives, could alleviate your problem. like you said though, no easy answers, except to rely wholly on the Lord. He knows the right thing for your dad. best wishes to you both.
I didn’t read every single post. Have there been studies where adding plenty of light at sundown can help a patient?
My mom has advanced COPD. She lives with me and my husband. She became very ill last May after getting pneumonia. While in the hospital she was offered to have Hospice take over her care. Since she is on a limited income she chose to do this because they pay for her meds that relate to her COPD. They put her on morphine. She had a reaction to the morphine and was completely in a coma like state for a week even through I had them quit giving it to her after 2 days. I believe that during that time she must have had a stroke because now she does not walk with out assistance. She is basically bed ridden and needs 24 hour care which is provided myself and my siblings. The past few months have been awful for me at night. She fights and argues with me. She wants to know where we are moving the house to. What am I doing to the doors and why am I moving them? She has a little boy that is sleeping with her every night and wants me to tell her who it is. (no one is sleeping with her) She has accused me of hitting her, or tells me she hates me. She will have me up 7 or 8 times in an hour. During the day is is more coherent and with it. Is this Sundowners?
mel, sure sounds like it. sorry to hear this, but you came to the right place for support. read on, my friend. good luck with your mom.
Thank you for the responses.
Since my last post… my Dad has improved a lot. He’s much more aware during the day than he was, and much more coherent at night, although evidence of a dimming mind are definitely present. Only now we’ve come across a new problem… he’s aware that he has his own property! It took us the last entire week, of telling him about 30 times each day that he only had ONE property, and not three or four! He thought we were lying. Now he may not totally believe us, but he’s accepted that he has one property. He wants to know why he’s being held here and not allowed to go home… he said when he gets back up there (my brothers promised to take him up LAST WEEK so that he could physically see that all of his things are still there and not stolen), that he’s going to refuse to come back, and is going to drive his van around town…None of us are sure how to approach this.
The second we tell our extremely stubborn Dad that if he’s caught living alone, that social services will whisk him away to a nursing home, seize his property, and get my brother’s power-of-attorney revoked for lack of care through the courts (which is all true)… he will get very mad, and start walking down the street the minute anyone goes to the bathroom! We know him well, and he will NOT take this well…worries me. We can’t “not” tell him either…we are just not sure what to do.
I feel bad for my brothers since Dad is blaming them… they are strong willed as well – but I don’t care who you are, you know that foul words from a parent hurts just the same.
I guess I’m not really looking for answers, so much as needing someone to vent at.
Thanks for listening.
Maybe get one of his doctors to sign a letter of incompetency? Then your brother with the power of attorney has power over his care, treatment, where he lives, etc. Hate to suggest that, but…………
Don’t know what to do. My dad has early dementia and we just put him in an assisted living home. He wasn’t happy living with my brother or my sister. Now we think he has Sundowners Syndrome. He becomes very erratic and agitated and begins to call us constantly from about 4 – 11 p.m. and then again around 5:30 a.m. demanding to go home. He gets really nasty and nothing we say makes him feel better. We feel bad not answering his phone calls but it’s so upsetting.
My mother in law has since passed last august, but we can not say enought about haldol she got to help with sundowners. What a difference the right medicine made. Talk to your dad’s doctor about a medication for this. If you don’t get control some assisted living homes can not handle them. my mother in law never slept, cat napped.. but never slept.. so we heard her all night , and we were up much of it with her. We understand, You can not handle the verbal abuse and make good decisions for him. HE IS MISERABLE, It is not fair for him not to get the right meds to help him feel better. When he feels better you will too. he may complain about the meds, but they will help. It took a week or so on the meds, till we had a great difference. One day at a time.
Cindy, my dad was in the exact same situation. Please try to read the “36 Hour Day” book. It helped me a lot. Also, if you have faith in the Lord, never cease to call upon it. It’s the only thing that got me through without having a total breakdown. I hope this phase doesn’t last too long for your dad. For mine, it lasted for about 2 months (and that was the worst part – the phone calls, especially after bed time), then his dementia progressed to the point where he didn’t know who i was anymore, and couldn’t use the phone anymore. His brain couldn’t process how to have a conversation on it. So no more phone calls. We had to place him in 2 different assisted living homes, until he attacked a caregiver. Then we placed him in skilled nursing. He rapidly progressed to needing hospice care, and died in October. I hope you find the relief and direction you are looking for. Pray a lot!
Thanks you for responding to me. Last night, my dad tried wandering away from the assisted living fac. They put a wrist band on him. Told him they couldn’t let him stay there if he wandered or wouldn’t wear the monitor. At midnight, he took his razor and cut it off! They said they had never seen a monitor cut off before. Looked like a rat had chewed it. He was very proud and called himself a hero! He feels he has rights. He tells us that when we die and see God, we’ll have to explain why we did what we did to him. He know has to live in a lock down facility for Alzheimers patients. Makes me very sad because my dad is such an educated man. He is a retired pharmacist. He’s also refusing to take all his meds.
Thanks for the advice.
if he were at home, he would still be wandering, and you would be incharge of handling all the shifts, they have a team at the home. I am surprised he didnt cut himself doing that. but if he gets proud of himself, you get proud of him.. for what time he has left, dont fight, if possible, you CAN NOT reason with him.. so be his friend, if you cant agree with him say nothing… if he says i am a hero.. say you always are with me.. the home can be his caretaker, like parents.. you be his friend.. let them be the bad guys,you be the good guy. take him chocolates, or peppermints, take pictures, not in frames, you can hang on the walls, or frames without glass.. get the easy off tabs and hang some, make it more like a home and less like a lock up facility. My mother in law was a charge nurse for 30 yrs, she was in charge of the entire hospital nurse division at one time in virginia.. we know.. dont look at him and expect him to respond like dad.. he is sick .. remember that and dont get mad at him.. he is doing the best he can… he has to live in that body you are so frustrated with, he is frustrated with it tooo. take a meal with you.. play checkers.. you cant make the disease go away, but you can make a moment in time better… keep in touch with his doctor there, haldol comes in liquid form, it can go in orange juice, I wished i had tasted it so i could tell you what it taste like, but i didnt… hahaha.. he is your special needs DAD.. love him, agree with him, you can say.. I wished you could go home too, the doctors said not yet… I hate it too, I am powerless dad, I am sorry.. i love you.. want to play checkers.. this kind of coversation will take a while to get used too, but it helps.. blame the doctors not him.. not the disease.. he cant understand that.. he can understand doctors, he worked with them all his life. .. make out it is a recovery center. . when they say he can go home he can.. but not yet.. now dad i know you have to be in this recovery center till you are better, can i bring you anything tomorrow..
does he have a dvd player in his room.. those are important.. by LUCY SHOWS, and watch him laugh… roy rogers,. gaither gospel singing.. you have to make your fun times now.. you will be fine, it takes 30 days before something becomes a routine in the alzheimer brain.. you can do it.. each day will get better.. hold on… he is safe.. God sent you angels .. the home if filled with good people who want to help and are part of your team…
Wow, Lynda, you said it ALL! And I will totally agree, as we did with my mom, that when she wanted to get out of there initially, we DID tell her we had no power; she’d have to talk to the doctor; that they were only holding her until she was medically able to leave. Pretty soon, she totally forgot about leaving. This all changes so much from day to day; no one ever knows what to expect. Eventually, she didn’t WANT to leave.
All great advice Lynda, thank you. Good point about the glass frames too. Before my dad went to skilled nursing, he broke furniture and tried to break a window (luckily he just knocked out the screen). He would also put all his stuff in a big pile in the middle of the night and say he was told he was leaving, so he was getting ready. He did cut himself up while doing all this. I totally believe that he cut off the wrist band, but i question the fact that they let him have access to a razor in the first place (scary!). He had a big thing about his rights too. He always wanted to talk to the sheriff, police, state department, whatever. He would even think he was law enforcement at times, and interrogate the staff. When he still could use the phone, he called me asking why i did this to him, and i reminded him of the power of attorney. He made them go bring it to him to show him (not that that helped). So very sad. My dad was really smart too, and was an avid reader. It’s really hard to see the drastic difference between what they were and where they are now. Feel free to vent on here anytime, we all get it. Oh, and one thing I did both verbally and in writing was to thank and encourage the staff. They don’t get a lot of that, and they really need it. The things they see and have to do….
And, Meds may not always work, but maybe they will help… Lactulose.. ativan, try different ones, till something helps, and go with your instincts.
Hey, is anyone else seeing some of these patterns??? My dad is 81 and the neurologist can’t decide quite which dementia he has. Possibly Parkinsons…. no, maybe Alzheimers…. nope, now it’s vasculaar dementia… yep, that’s it! He had surgery to have his gall bladder removed 3 years ago. In the hospital I couldn’t communicate with him prior to the surgery. He was so doped up that he couldn’t understand me and could not speak. They claimed that he was in so much pain that he was heavily medicated ( Morphine??) to keep him calmer. After the surgery, he never really recovered. The neurologist claims that an MRI shows that he had some strokes, possibly due to drugs at the time of the surgery or…. what? Over the last 3 years he has become more like an Alzheimer’s victim. Memory loss, some stroke like speech loss, dressing muck ups, and finally we are seeing the Sundowners syndrome. And, he was on medication for heart problems… Atenelol, and Metformin for diabetes. Plus various other medications. I am seeing the diabetes reoccurring in this website, plus the heart problems, plus many, many incidents of hospitalization that turns into dementia symptoms quite readily. What about anesthesia?? It would be fascinating to see how many of our loved ones went in for surgeries and came out with dementia. And, YES, I think the entire world is overmedicated. Dr.’s seem to prescribe drugs and make referrals to other Dr.’s. I think they are becoming less and less able to actually HEAL anyone. It is sickening and frustrating. And once you are put on a medication it is very difficult to remove you from it. No Dr. wants to remove anyone from a medication they are currently taking. So…. maybe if enough people begin to discuss their situations with each other we may begin to understand more than the medical profession. Is anesthesia something to look at?? Are alot of dementia patients currently taking alot of the same medications for diabetes and heart problems? Is there a personality that seems to magnet up dementia? I don’t think I have ever read anyone who says, ” my dad was always a real jerk and cruel to animals and now he has dementia!” Most folks write about the nicest, sweetest, caring and intelligent people who end up with Alzheimers. Just some thoughts…. thank you to all of you who provide information and solace.
My dad went in for back surgery in fall 2008, and came out with a stroke. We suspected that it was because they had to give him platelets because he has ITP (low platelets or whatever). They apparently told him of the risks, but his back pain was severe so he went ahead. The back surgery was highly successful, but he was never the same after that. He had been diagnosed with Parkinson’s in 2000, and looking back, we think the dementia actually started before 2008. We didn’t see it before, but can now. Problems with dialing the phone, little things, not keeping up the house when he was fastidious before. He was an avid reader, very intelligent wordsmith. After the stroke he couldn’t read and had very frustrating speech problems. The dementia progressed, especially rapidly the last 6 months of his life. He passed away in October. He wasn’t diabetic (surprisingly) or a heart patient per se, but he was on around 16 different meds for various issues, and we also thought those made the problems worse. By the time he got to see a geriatric specialist who tried removing and changing meds, he was too close to the end to bounce back. It’s just an ugly situation all around for anyone who gets any dementing illness. His cat scans also showed some older undiagnosed strokes. After reading the 36 Hour Day, and talking to many people with a lot of experience, I learned that heavy alcohol abuse can lead to a really angry combative dementia, which my dad had for sure. He had been sober for like 16 years, but it still took it’s toll, along with heavy drug use since the ’60′s. Hope it helps that you know you’re not alone and your dad’s situation isn’t terribly unique. Good luck!!
Fortunately I have never had to see a loved one go through this, but I was a caretaker (hired) for 22 months for a lady with dementia. I am also a psychiatric nurse.
Reading these comments has been so inspiring because of the love all of you have even in these more-than-stressful circumstances, and your faith in God that is the source of your strength. When the going gets rough, just break the day into segments that you can handle. If taking things a day at a time is still too overwhelming, take it an hour at a time. Or two minutes at a time. Ask God to strengthen you and see you through whatever portion of time you think you can bear. “God, just please see me through the next 10 minutes because I need you and I can’t do this by myself.”
Haldol is one of the medications mentioned in these comments and it can be very helpful. It does come in a liquid which is tasteless, so it can even be added to water. That makes it very do-able for people who refuse to take meds or ones that have difficulty swallowing pills.
Very well said Shelly, thank you for sharing your faith. He is the only thing that got me through!!
I lost my father yesterday, at the age of 90. He was surrounded by many family members, as I had to tell him to let go and not to be scared and that he is so loved . He was given his last rights, and let go one hour later. Dementia and kidney failure over took him. He died very peacefully. I want to thank all off you for your posts. This site has helped me go threw my trying times. All who showed me support, Thank you again. I wish the best for anyone who has to deal with this issue. I thank God for answering my prayers. My Dad died peacefully , with no struggles.
So sorry for your loss Keith. I am so glad he passed in the best way possible for him. What a blessing for him and for you all. I bet you are excited to think about the next time you see him, and how whole and healthy and happy he (and you!) will be. Thanks for your message.
Keith, so sorry for your loss. Everything about this disease is so sad. But remember, it’s now time to take care of yourself. (And I’m sure your dad would agree.)
Thanks , Mary. Yes it is time for all involved to heal. He is at peace now, in the loving hands of God. We will have mass for him thursday and then his body will be transported by plane, to Minnesota, where he was born, to his final resting place, next to his mom and dad.
Powers of attorney and living wills, I haven’t seen this on here a lot and wanted to remind all, these are important. MEDICAL POWERS OF ATTORNEY, without them many doctors will not speak to you. We have used them to refuse treatments, that might cause pain, and not really solve problems. Sometimes if seniors have insurance, hospitals tend to run a lot of test. The test for Neurothapy is painful, when it was ordered for mom, I ask, can we cure it after diagnosis, NO, he said, then why would we put a 78 yr old through this pain, when we know she can not feel her foot after getting a cut that needed stitches in it?..Stress can add to stokes. I know she has Neurothapy. I used the medical power of attorney to refuse the test. We also used it to cut down on blood draws when her veins were collapsing. I think the valley of the shadow of death, is the process we go through when dying, no one can go through it for us, It sometimes can be a year or more before you pass. Our bodies sometimes shut down quickly or over a long period of time. Our jobs are to support the ones going through it with love, and compassion. If you have a family attorney get advise, if not , look on line. But, these are important things. Living wills, financial and medical… different.. powers of attorneys. A financial power of attorney will not work in a hospital setting, you need medical. I am not an attorney, but I know these are needed. Especially when a family member is dealing with decreasing mental health. We were blessed, our mom and dad did theirs way before we needed them. Once your parent has lost mental health, you will need a doctor to get involved. What ever it takes , get these done. Lynda
All excellent points and very true Lynda. Thanks again. I was also fortunate my dad did his before he lost his lucidity. I did need the doc to do a letter of incompetency when the time came, so the medical and financial p.o.a.’s would legally take effect.
Thank you so much to everyone sharing your stories. My Mom is 91 and up until 3 months ago, she lived alone. She has major spinal stenosis and her pain management consisted of taking 8-10 aleve aday. She would forget she took one or two and when the pain didn’t go away right away, she would take more. I would see her every Thursday and go out, over the last few years she needed to use a cane and hang on me because she was too proud to be seen using a walker. She slipped off the edge of her bed one thursday and I found her. After calling the police to help her up, (she’s a large woman) she FLAT OUT REFUSED TO GO TO THE HOSPITAL as people in the neighborhood would see her in an ambulance. That all started the downward spiral. She remembers nothing of the week long hospital stay and then 5 weeks in rehab. Sure enough, at night she would start in, I had to hang a sign to tell her where she was, it rarely did any good, she couldn’t wait for me to pull the shades so people couldn’t look in. She would then get so nasty and sarcastic towards me and I know she loves me more than anything. I’m the only daughter. I cried every day. When the time came to go home she didn’t want any help but I had to get her morning help to get her up. What a nightmare, I worried constantly, then I would go to the house after work and stay to put her in bed. The only saving grace is that she does sleep thru the night, she takes ametryptaline (elavil). Two weeks at home and another fall, she gets pneumonia and is back in the hospital. NOW she gets virtually uncontrollable. They put her on xanax. Grabs me and damands that I get her the hell out, she looks possessed. Two days and shes back in rehab. The worst 2 weeks ever. She has become that patient that all the nurses can’t stand. Crying, calling me to come and take her home when I say I can’t she cursed me out and says how much she hates me. The next day she doesn’t remember and thinks we are all lying to her her. She is now home with 24 hour care and wants to know when she is getting control of her house and how long is this going to last (with the woman living there) It has been so helpful reading all your stories, I feel like I am not alone. I can relate to all of you who feel like God is no longer listening, I have prayed until I thought I would pass out but I know He is there and there is some kind of plan. My mother went thru this with my grandmother, she made us tie her hands at night because she said she was afraid she would kill us. Later we saw some humor, but I’m not laughing lately.
Chris, I feel your pain! Luckily this won’t last forever. Tough season to go through though.
It often seems like we are chasing a phantom in trying to “solve” the dementia patient’s problems. My dad could no longer be cared for by his lady friend ( also 81) and so we placed him in a memory care facility. He did a spiral downward in all areas; weight loss, increased anxiety and delusions, a bad case of shingles, and just overall unhappiness. So we took him out of the care facility and put him in a private home with a care giver 24/7. She is an old friend of his and is 55 ( a spring chicken!) He was doing just great and we thought we had solved the issues ( from the shingles, to the diet, to the meds etc.). Until this morning when he went berzerk. He ran outside and nimbly removed the locks from the gates and shot out into the road yellling at the people he came upon. “Tell everyone about the terror!” Luckily my daughter and son-in-law happened along and could assist our care giver in rounding up my dad and finally getting him back into the house. They had called the sheriff’s office and the officer came out and told my dad to calm down and get hold of himself. Well…. now what? My husband and I have not had a 3 day run without some issue arrising due to my dad. It is so exhausting. But the worst part seems to be that the problem is unsolvable. You put them on one drug and it works for awhile. Then it doesn’t work. You put them in a care facility and that doesn’t work. You get care givers and that works for awhile and then it doesn’t work either. My husband and I are considering checking ourselves into the care facility!
It often seems like we are chasing a phantom in trying to “solve” the dementia patient’s problems. My dad could no longer be cared for by his lady friend ( also 81) and so we placed him in a memory care facility. He did a spiral downward in all areas; weight loss, increased anxiety and delusions, a bad case of shingles, and just overall unhappiness. So we took him out of the care facility and put him in a private home with a care giver 24/7. She is an old friend of his and is 55 ( a spring chicken!) He was doing just great and we thought we had solved the issues ( from the shingles, to the diet, to the meds etc.). Until this morning when he went berzerk. He ran outside and nimbly removed the locks from the gates and shot out into the road yellling at the people he came upon, “Tell everyone about the terror!” Luckily my daughter and son-in-law happened along and could assist our care giver in rounding up my dad and finally getting him back into the house. They had called the sheriff’s office and the officer came out and told my dad to calm down and get hold of himself. Well…. now what? My husband and I have not had a 3 day run without some issue arrising due to my dad. It is so exhausting. But the worst part seems to be that the problem is unsolvable. You put them on one drug and it works for awhile. Then it doesn’t work. You put them in a care facility and that doesn’t work. You get care givers and that works for awhile and then it doesn’t work either. My husband and I are considering checking ourselves into the care facility!
The problem is unsolvable…If you focus on the fact that you didn’t take your dad to the facility to “get well” I have had to do that for the past five years. We have had him at home and in and out of facilities (mostly in)Now he is in a wheelchair, he eats when fed. He says very few words. There have been many stages that lead to this point. When the change came each time, I would ask God to help me adjust to the change. Eventually, that would become the “new normal” I still have a relationship with my Dad, it’s just not the same relaitonship I had a year ago. I couldn’t have handled this if I had the whold picture at once. I’ts different for each person, but I want you to know you can do this. It is a journey lived one moment at a time. Take care of yourself in the process so you can make good decisions for your dad.
Linda,
this thing with your dad is only going to get worse. If you are having it very stressful, you might want to find a third party who can help. Find a senior care counselor who might can help walk you through this. Do you have a senior services , or at the hospital there are case workers who can help you talk this stuff through and make long term plans. If you have any brothers or sisters, call a family meeting, face this with all knowing it is going to get worse, and there has to be a short term plan and a long term plan, and a plan B for those moments when it all goes to pot.. LIKE OUT THE GATE.. ” it is not what is real but what he believes to be real” , don’t argue with him, he does not understand. Find your support group, maybe family or may not be.. ask for a case worker in the care facility, ask her to help with these plans, It feels better to ACT ON A PROBLEM , then to RE-ACT TO A PROBLEM. If you and your husband are not in a position to handle this long term, and many are not, Talk to his doctor, or someone who understands this disease. I hope you find the help both you and your dad needs. Lynda
My Dad fell on the ice 6 days ago and hit the back of his head and bruised his ribs. The hospital had him on morphine for 5 days. Last night while asleep in the hospital, he woke up and thought my sister was my Mom, who died 16 years ago. So, now the Dr. thinks he has sundowner syndrome. He has never experienced any signs of dementia. Does this make any sense?
Linda, it makes total sense. Happened to my dad after back surgery/stroke.
Linda, I feel doctors need to remember that the elderly do not handle morphine/pain meds as younger people do. My father had surgery twice and both times the doctors told me that they thought he had a stroke due to the way he was talking and seeing things. ( Yes, he did try to pull onions out of my mouth and asked me to catch the bird in the room.) However, after being taken off the morphine, he was his old self.
I have a 54 year old sister who is mentally handicapped, and been falling and hitting her head for about 20 years now. My parents have taken her for many tests, UCLA, USC and none of the doctors can diagnose. Over the past year things have gotten worse. She is now hallucinating, falling, lot’s of confusion. I’m worried she has the onset of dementia, sundowners….do you think this could be possible at her age???
Hi Katie,
Dementia does not have an age preference. Different brain diseases effect different body functions and thoughts. Falling a lot happened to my mother in law, the last 4 months. You could be standing beside her and down she would go. No apparent reason, not moving. My mother in laws sister passed at 56 from complications of ALZHEIMERS. So, it is possible. We will be thinking of you..Lynda
Hi Katie-
I am the caregiver for my sister-in-law who is 53 and also has Down’s Syndrome. She, too, has had “falls” that were later diagnosed as seizures. She hallucinates, has confusion, and memory loss. We have been through a boat load of testing with her through a period of several years with the final result being an Alzheimer’s diagnosis. You didn’t say what your sister’s mental handicap is, but the risk factor for Alzheimer’s in Down’s patients is significantly higher. Check with her doctor and have them do some testing. My sister in law is now on Keppra for seizures (the “falling” has stopped) and Namenda for cognitive function. She also has a thyroid imbalance which, untreated by itself, can cause dementia like symptoms, so she is also on meds for that. She is also on Seroquel for the hallucinations and while they have not stopped, they are no longer distressing to her. We are fortunate to live in Southern California and she is seen at the UC Irvine Down’s Syndrome program and I cannot say enough good things about the care she receives there. She also sees a psychiatrist to monitor the Seroqual meds. There are similar programs in Chicago and New York, if you live close to any of those places.
My dad has been doing quite well with his caregiver in a private home. We had him on Atavan at night, but he was getting a bit nutty during the day and so the Dr. suggested Haldol during the day. The caregiver stopped the Atavan at night and went with just the Haldol during the day and he was doing pretty well , even at night. Now, however, he is not sleeping at night again. This is a severe problem for the care giver who NEEDS to sleep at night. He is up, wandering and getting lost and creating problems. Does anyone have any experiences with these 2 drugs?? For awhile he was on the Haldol in the day and the Atavan at night. He was drooling and coughing and not sleeping anyway. He has only been taking the Haldol for 3 weeks. I did read the entry above that says that the Atavan can wear off rather quickly. Does anyone know about drug interactions between the two? The Dr.’s in our area don’t seem especially gifted in dealing with dementia. They seem to just want to refer us to someone else. Thanks for any help you can give.
If sleep is an issue i recommend Melatonin… this will help him sleep at night but has no long lasting effect and isnt addictive. If the Haldol is only taken once a day try changing the time he is taking it…
Those are just a few suggestions i can recommend from my experience of working in Long Term care.
Linda, as I recall, my dad didn’t do well on either of those. It’s different for everyone. Meds are so frustrating to deal with, especially if there are several of them. Hope you can find some resolution.
My FIL went from falling more than once at home, to the hospital, to the nursing home, to skilled nursing and just got moved into the Alzheimers wing. He’s a sweetheart during the day but mean and nasty at night. My husband gets upset when we visit if I try to converse with him about the past. I’m just trying to live in that moment with him. Am I wrong? He shuffles when he walks so between what they felt was dementia and his walking, they’re starting him on alzheimers medicine (haldlo?) and something for Parkinsons.
Your dad may not be capable of conversing back about the past, but if it makes you feel good, DO IT, if it upsets your dad, or he has to struggle and feel bad that he doesnt remember, DONT DO IT, Your husband feels like you are riding a dead horse, why ask someone a question who surely doesnt know the answer. A mans logic, says why would you do that? … But, he is your dad, and you are having to adjust to loosing him. You want to hold on to any moment he MIGHT be able to give you. It is ok, to be you. Ask, if he remembers YEA, if he doesn’t , say ” its alright, do you want to have ice cream?” Take him treats., heck, he will be crossing over soon, this is your time together…. , let him EAT CAKE , bacon, salt.. all the things you have worried he would eat.. .. The shuffling may be a sign that he is forgetting how to pick up his feet and walk. ENJOY EVERY MINUTE YOU CAN. Make every minute with dad as fun as possible. Remember , Gaither singing dvds or Lucy, what ever brings him a smile… Never argue with them.. If they see a race car driver, then ask which one and enjoy the conversation. Go for THE GOLD in moments, this is his time.. Each day may get worse, SO THRILL IN THE MINUTES… LYNDA
Lynda, your advice is such a Godsend, and all right on. Wish I read more of these BEFORE my dad’s term in the sundowner seat! Thanks for all the help you are providing to those in need.
Dear Lynda,
Thanks you so very much, ur comment to Sharon has touched my heart. Just over a week ago I was talking to one of my sisters, on how we should treat our mother who has Alzheimers. You took the words out of my mouth. Just knowing that there are others that think, and feel the same as I, makes me happy. Let them be however they want to be. If they live in a different world let them live there, because in all honestly they know no other way. Don’t correct them when they are wrong, let them be. If they are not hurting you, then why would you hurt them? After all they have shared their life, an they should have us to remember for them. For my mother, I pray each day that my family is willing to face what may come, to find the strenght to except that day, and prayer for other tomorrow.
I have worked on the Alzheimer units for over 15 years and we have had patient who had sundown syndrome. We made the adjustments but that was for only 8 hours to 12 hours on the night shift. i understand how you feel. My husband and I moved in with his parents in October 2010. His father broke his hip and his mother was dignose with Alzheimer disease two years ago. His neiece was caring for the both of them until his mother ended up a trugeon to the head that couldn’t come from a fall according to doctors. We told her to leave with a court order and we have been taking care of them. This week after my husband made the mistake of letting my mother in law sleep past 5 p.m. Sunday. I have been dealing wtih Sundown Syndrome but it is okay because I don’t work and my husband don’t work either. We are retirees and I try to explain to him that she just want to watch television and I stay up with her. We have to do like we did when we had babies or small children, sleep when they sleep and be up when they are up.
I take her to church with me, I am called of Jehovah God as his apostle and I pray and speak the Word of God over her and she can communicate with us as well with my church members. When we take them to church on the 2nd Sunday in every month the people always walk up and say do you remember me? I think it is so unfair, it should not matter if she know you; just be happy to see her and keep a simple conversation going with her and she is find.
I hope I have said something to help or encourage you in the endeavor waiting for you ahead. Accept your father where he is don’t try to put him in the past. My sister in laws try to take her back to the past. I don’t know her past I have only been in this family 3 years and that is good. I accept her where she is at now and I don’t try to take that from her. If you are a new born christian and you don’t quite unstand how to live for Jesus. You will not know everything but you will began to walk by faith and not by sight so this is not different. Walk by faith in your father and not by sight what you want it to be and not what it is and you will find rest for your soul. I will pray for your father and you pray for my mother in law and we will see Jesus do the rest. Your Friend In Jesus Christ
My father-in-law had knee replacement surgery this week and at night he becomes agitated and they have to restrain him. This has now happened for the second night in a row. He was suppose to be released today but has to stay in. I am staying with him tonight. The doctors and nurses are saying this is from him having surgery and coming off of the anesthesia and gradually taking him off the pain medications he is on. He does not remember doing these things the next day and it upsets him. When I first heard that he was doing this I thought of Sun Down Syndrome. Am I right in thinking this or could it just be a reaction to the surgery, anesthesia, and medications?
Sundowners often comes on after a stay in the hospital. What kind of pain meds was he on? Did he have any dementia before going into the hospital? I have known many with knee surgery, and not had this experience. Do not take him home until THEY have him back leveled on meds. If there is a reaction , find out what it is to, cause you don’t want to go through this again. My sister had a violent reaction to demeroll, (spelling) , she would take you out on it, she was allergic to it. You have to know what he is reacting to. If they try to release him tomorrow , you say no.. I am not qualified to handle this situation, what is plan B. I REFUSED, to take my sister home, she was crying uncontrollably, and MAD, MAD , MAD. She was in pain, and turned out her pain meds had valuim in it, she was highly allergic to that. It was the meds. Change pain meds, and stablize before you go home. Ask questions, and get answers. Ask for a print out of all meds he is on. Your dad is having moments of not being lucid, get a MEDICAL POWER OF ATTORNEY while you are in the hospital, patients assistance can help. So , if they say they cant give you one, stand on the POA, AND them restraining him is proof he is having moments of incompetinents. (spelling it is late, and I am tired.) Send another note if you have questions. LYNDA
My 94 year old mom who lives with us began complaining of left side pains getting in an out of bed with screams like she is dying. Xrays and doctor exam revealed nothing. One night she was screaming because she thought she was falling out of bed, but was not. Last night screams got worse every 30 minutes for 4 hours and then stopped. She could not remember any of it. Also wet herself in bed for first time in one year. We think she is screaming in her sleep. It is keeping entire household from sleeping, because screams are very loud like she is dying. Do not know what to do. Going to try having her sleep sitting in a chair which she did for several years when living on her own. If sundowners syndrome, I wonder if leaving a light on all night will help.
Hi Jimmy, I can hear the stress. If it is Sundowners, and it does sound like it, it will not go away in a chair. They are NIGHT TERRORS. She can not help it. They are worse than night mares. She may believe someone is trying to kill her, or stabbed her, falling off a building. Then when you walk in, the mind jumps, and she has no recollection of the sounds she has made. See a neurologist for medicine. It is not depression, it is hallucinations. But, you need to see a doctor for the actual diagnosis. She can’t help it, she is facing terrors. Help her. Read some of the old post, and see what meds might help.
My father who is 94 and has exhibited NO previous symptoms of Alzheimer’s or dementia is recovering in the hospital from major back surgery (two vertebrae broken in a fall and successfully repaired) and is displaying classic Sundowner’s symptoms. I am finding very little information on Sundowner’s in persons who do not already have dementia and have only started displaying symptoms after hospitalization. Can anyone out there give some help?
Hi Bob, Yes , this often comes on after surgery if they are older. Maybe.. a small TIA (tiny stroke) happens in surgery, TIA’s are often missed. My mom used to have them, my sister and I were the only ones who could tell she had had one. There is no major sign. they don’t always show up on CT’s. I don’t know exactly why, but I know they happen. If you read on her on OLDER POST, you might find someone who had back surgery, or heart surgery, and now have this. However, usually once they have it, I have not read where it goes away. There are some ideas on here, in how to live with it. We are here if you have questions. I am so sorry that your family is having to go through this. LYNDA
What to Do for a Person You Suspect of Sundowning
Possessing a clear understanding of what a person is going through will go a long way to preparing your mind and body for a healthy response. Gerontologists recommend staying calm and reassuring to convey a sense of peace and tranquility. Never confront a sundowner, accuse them of being irrational or try to convince them that the feelings they’re experiencing aren’t real. Suggest a soothing drink or a nap to help restore balance. Close drapes or shades late in the day, and divert attention from clocks and watches. Involve the sundowner in a favorite structured activity. Additionally, make certain the sundowner’s basic needs — like hunger, thirst and hygiene — are being met to reduce stress. When all therapies have been exhausted, turn to oral medicines, patches and other chemical therapies being fast tracked by medical researchers. At the most extreme, antipsychotic drugs and/or sedation may be prescribed to help sundowners find peace from the storms raging in their brains.
Thank you to all who offered me adivce on this website. It was a mind and emotional support system that I didn’t have anywhere else. My dad passed away on May 10th. He had suffered from aspiration pneumonia and once he got into the hospital he never improved. We removed him from the hospital and he died in his home with his care giver 3 days later. It was a blessing. I wish all of you good luck with your situations. And Bob… you just posted regarding your dad getting Sundowner symptoms after surgery…. would you know if he had had any sort of Morphine during his hospital stay??? We are seeing incresed suspicious instances of anesthesia and morphine put together in the surgery situations and, bam! people wake up with Sundowners. I don’t think there is any professional research or even recognition of the situation, but my husband and I are finding the 2 together often and then the result is Sundowners. I would think at some point, someone would begin to be suspicious. However, most of the medical people we dealt with were not especially curious about anything. We often found the Dr.’s to be both arrogant and stupid and I got more help from the folks on this website than anywhere else. I know that sounds really pathetic, but it is true. I found out about the 36Hr. book, the drug Haldol, the other possible drugs, all on this site. Anyway, thank you all again. Linda T
Linda – my Dad was on morphine for a few days after the surgery. They replaced that with oxycodone combined with Tylenol for another few days, and Haldol at night for sleep. Most recently his pneumonia is not getting better (or worse) and he is having trouble swallowing food so he is being tube fed and has been placed back on the morphine pump with like a 12-minute timer.
Bob
I am so pleased that i found this website today! I have been feeling very depressed and guilty, because I did not understand what was happening to my dad.
My father was diagnosed with Parkinson’s over 11 years ago, and 4 and a half years ago, my parents moved in with us, as my mom could not drive a car, and my dad was not allowed to do so anymore. Looking back, I realise that my dad already had sundowners, although it was not so bad yet, just bad dreams and hallucinations, with very little sleep. Being sleepless was and is normal for my dad, as he has always slept very little.
I had better explain my dad a bit more, than maybe you will understand a bit better why I feel the way that I do. My dad has always been the “BOSS” of the house, his word was law, and even my mother had no right to express any thoughts, or ideas or anything. She was not even allowed to choose the colour floor tiles she wanted in her kitchen! My mom raised five children, worked basically like a slave all her married life (in the house) and had to do everything for my dad. He could be sitting in the kitchen, having supper, just in front of the fridge, and if he wanted something, he gave the order, and she had to stop eating, get up, and take it out of the fridge which was a foot behind him. He mistreated my older brother – both mentally and physically – basically destroying my brother’s self image – because he was a soft and gentle person like my mother – he was supposed to be tough and hard like a man!! I am the eldest of five, and the only daughter, and I can remember how my poor brother was treated. My mother would try to intervene, and it just made it worse. He was never physically violent to wards to my mother, but was verbally abusive if he did not get his way. My three younger brothers managed to get away without too much mental damage, as he concentrated on his oldest boy.
As the years went by, I got married to a wonderful man, soft and gentle, the total opposite to my father. He has also caused that I am very defensive, and will not keep my mouth shut if I feel that I am being verbally attacked, which fortunately for me, my husband understands.
Anyway, to cut a long story short, just shortly after my parents moved in, they were both diagnosed with cancer, my mother with colon cancer and my dad with prostrate cancer. My mother had a portion of her colon removed, and started chemo, but had to stop as it was affecting her heart badly. My dad had an orchidectomy. My parents were very young at this stage, just 70 and 71 respectively. My parents moved into their cottage on our property, and I would go in every day to check on them, take them shopping, library, etc. I worked from home, and according to my dad, I was available at all times for them, so he could not care whether I was in the middle of a job, if he wanted something, I had to get up immediately and do what he wanted, there and then! It caused quite a few arguments! My mother was finally starting to fight back, and refusing to bow down to my dad all the time, but it was too late. All it caused was that my dad was just horribly confused by her reaction.
My dad was quite together, with only mild sundown syndrome symptoms at night. It all changed in October last year, when my mom was diagnosed with terminal cancer – colon, liver, lungs, spine and lymph system. The night after we told my dad what was happening, he started with very bad sundown syndrome – which in a way I understand, for it was a huge shock for him. But at the same time, in stead of being there for my mom, placing her first and supporting her as much as he could, he just gave up and became totally dependant on her. He also became both verbally and physically abusive towards her, and I had to seperate them. My husband and I moved them into our house, putting my dad in the main bedroom, and my mom in my daughter’s bedroom (she moved out so that we could do that). I was eventually totally exhausted, as I was nursing my mom day and night, and also having to try and keep my dad calm and contained. That stopped the day I caught him hitting her, because she would not get up and help him dress! My mother was the entire spill of our family life, and she was more than my mother – she was my best friend, my sister, my everything! I adored her! I love my dad, but not in the same way as I loved my mom. There was no way on this earth that I was going to allow my dad to mistreat my mother even more. We eventually hired nursing care, one fulltime at night to take care of my dad, I took care of my mom at night, and then a nurse’s aid during the day for both my mom and dad, while I tried to rest and carry on working. It was becoming extremely stressfull at home!
My mom eventually passed away on 28 February this year, and my dad has just completely regressed, showing all the symptoms that are discussed on the blogs here. We eventually had to let our night carer go, as he was gay and unfortunately my dad started saying that he was “fiddling” with him! We kept our day carer, and she has been an absolute treasure, helping to keep me sane! She works during the week, and we have just this weekend hired another nurse to take care of my dad on Saturdays and Sundays, while I take over at nights.
My dad is on various types of medications, including 3 different tranquilizers and 2 sleeping tablets at night. He complains of terrible pain in his left shoulder, but xrays do not show anything wrong. Since my mom’s death, my dad has been suffering from UTI’s, and is now on a permanent antibiotic. (he has a permanent catheter due to his prostrate cancer, he is unable to pass urine normally). He is constantly trying to get up, still does not sleep, in spite of all the medication, will insist of trying to walk, even without a walker, undresses himself at night, is verbally abusive, and last night, for the first time in a few months, tried to hit me!
I have had enough! I am wrong, I know, but I have not been able to mourn my mother, I am so angry at my dad, for once more, he placed himself first and made my mom’s last remaining days on this earth more hellish than it should have been! I am struggling to get him into a home, because they are not all equipped to take care of him, and there are huge waiting lists here in South Africa. Also my dad never wanted to listen to anyone about making provision for his old age, so all he has is the proceeds from the sale of his house and a tiny little government pension. He has given my brothers a huge part of the money he got for his house, and now so little is left that my husband and I are going to pay a lot towards frail care once I am able to get him into a home. I am stressed, exhausted, cannot forgive my dad! I also feel devastated that I feel this way, which just makes things worse.
Michelle,
I am very sorry to hear of the loss of your dear mom. She sounded like an angel leashed to a demon, sadly.
First of all, you are NOT wrong for having had enough and being mad at your dad. Please know this. There are limits to what we can do for our loved ones when they get to a certain stage (which in my opinion your dad is way past, and is lucky he got to stay with you as long as he did!). My dad also did the naked angry violent up at night blablabla stuff. Only a professional can really deal with these times, and sometimes it’s too much for them too. I understand the difficulty of placing your dad and finding a home for him. Violent men are the most difficult, since no one wants to take a chance on them. Too much liability, I guess. Same in the USA. There were times when I didn’t know where we were going to put him, since he got evicted from 2 homes. The only thing that got us through was the Lord. I was way in over my head and could only take one step at a time each day. Jesus was with me the whole time and took me through each step. I had to rely 100% on Him, and He came through, as He always has and will. Pray without ceasing, if you aren’t already. If you aren’t already working with consultants and professionals in the elder care arena, please ask around at the senior homes and alzheimer associations for referrals. They helped me in countless ways. I hope they can place him soon, that will be a lot better for you. May I ask how long he is expected to live, if they have given you a timeframe? You are not a bad person or daughter. You can stop the guilty feelings. Don’t even let them get a foothold!
Hi Tammy,
We have no time frame for my dad. He could live 3 weeks, 3 months, three years or 20 years! And the time lies in front of me like a long pitch black tunnel, with no end in sight. I am now at the stage of having a grownup toddler on my hands, who when he is in the full grips of SD, throws tantrums when he does not get his way. But at least when I had children, the tantrum stage disappeared as they grew up, and the situation just got better and better, and I also was stronger and physically better equipped to deal with it. I am n ot so strong with my dad, at least physically. My husband has had to step in help me, as for some reason my dad really respects him and loves him. My hubby and our nurses are the only ones who have not had to deal with the bad side of my dad, for he is always on his best behaviour with them. Someone from hospice said to me that I should count myself blessed, for my dad loves me so much that he can let go with me! If this is being blessed, than I do not want to know what cursed would mean!!!
After seeing and reading this site, I sat down yesterday and started searching for specialist homes who deal with patients like my dad. I have managed to find quite a few, of which 2 have a place available for him. It took me the whole day! I made an appointment with them for Friday, and will go and inspect them, and then make up my mind what we are going to do.
Thank you for your kind words, they made me feel better instantly. I realise now that the way I feel is because I am exhausted, both mentally and physically, and it is also part of the process of grieving for my mother.
Michelle,
Everything you are feeling fits your situation, a couple things you might not have thought of. When your dad was born, there was depression, WWII started, men had to be tough and mean they thought. Ladies Home Journal, told the wife to put in white carpets, and put the children to bed at 7, the moment the man came home. She was told to keep her husband happy, he worked. They both responded the way they were taught. Although it might not have been perfect, it was the way things were. We are talking over 70 years ago, here Slavery had only ended in his fathers life time. Big things changed in their life times. It is not easy to change with the times. We say we will, but when you are 50, you just listen to oldies.. well not all.. but you see where I am going. He is and She was who they were because of where they came from. Let that give you some understanding till a little forgiveness can find its way in.
You have done more than so many would even have tried to do. It is time to call in a team. Your back up troops, to care for your dad, if you can find a suitable place. If not call your brothers and have a TREATMENT TEAM MEETING. Put all the cards on the table and ask for advise, assign jobs. The young man , who your dad was so abusive to.. might be able to give mental support… you all have to remember that a treatment team is not EMOTIONALLY INVOLVED.. so since you don’t have one, you have to become that team. Try not to think when you are doing so in anger… get a sitter 24 hours before a team meeting.. so you have time to calm, get those boys who were not so hurt, to assist.. if it is the new century, they are part of the team,,, anyone not helping must want to step up and take him on full time.. each keep him a month.. or 2 weeks if a month is too long.. get a neurologist, to put him in a hospital to balance his meds, usually 3-30 days.. making sure he is on the right meds.. Once he is in a hospital, if you feel you are not qualified to care for him, tell the hospital, and have them assign him a social worker.. See how they do then..
You have done a good job… thornes to daisies.. my family had a very bad man , who severely abused his kids… when he was found in a Texas hospital on vent, the hospital had to find his family states away.. Each child did not want to pull the plug, although revenge could have taken over, their Christian hearts took over, and took compassion for man who should have died a terrible death.. With compassion and forgiveness, they asked them to do a brain scan to prove he was brain dead, they took another 72 hours to pray, and each to come to terms of forgiveness.. When their dad died, they had him brought home, buried him beside their mom, his first wife, and said … she always loved him, now he is nice, he had been baptisted in a church mannny years before, they prayed for his forgiveness of souls, and they let go.. these are children who now adults slept with guns by their beds their whole lives… You have done a good job.. forgive yourself for the guilt you feel.. Your mom did a good job, and it was your dad who made you the strong woman you are today , there must have been something he did good once.. focus on it.. you are a good daughter.. it is time to call in the troops. .. God bless..
Hi Lynda
Yes, I agree with you about the times in which my parents were born, making them who they are, but at the same time so many of my friends’ parents were born the same time, and their fathers were not like my dad. My husband’s father was even older than my dad, and he was amazing with his wife! She was a full time housewife, and he worked, but he still came home and helped her cook, and helped her clean up afterwards. When he retired, he took over the housework so that she could concentrate on her hobbies, such as needlework, sewing, etc. She was only too pleased, for her health was already suffering by then, and she HATED housework! He loved it!
I also agree with you that my dad made me the strong woman I am today – totally determined to never accept what my mom had to, and to NEVER treat any of my children the way my dad did!
The young man that you are talking about is now 51, and all my brothers are behind me, and support me as well as they can, but unfortunately none of them are in any position to take my dad for any length of time. My eldest brother is single, and unfortunately is crippled after an accident at work in which he broke 5 vertebrae in his neck. He is still able to walk, but will be in severe pain for the rest of his life. He is the only one who has been able to take my dad for a weekend, but I feel that it is unfair to saddle him with my dad for a longer period of time. Unfortunately we have been hit very hard with the latest economic depression that hit the world recently, and my two middle brothers are unable to keep my dad, as they are struggling to keep the pots filled and families fed. My youngest brother lives more than 3 hours away, and he comes through once a month and spends the weekend with us, to keep my dad company. My dad, of course, is on his best behaviour then! That makes me so mad! Unfortunately he cannot take my dad for any length of time, for his wife is in the same boat as I am with her mom, she has been nursing her mother for almost 20 years now. The old lady one day decided that she was not going to get up and do anything for herself anymore, and my poor sister-in-law has been doing everything for her since then. In fact all my brothers live more than an hour away from me, and rarely are able to come through and spend time with my dad. My eldest brother is in the police force, and works long and irregular hours, and that makes it even more difficult for him. I was the only person to able to help my parents, and I did it with all the love in my heart, especially for my mom! My dad has always been a selfcentered egotist, and as he got older, he just got worse! I was also the only one, apart from my youngest brother, that could talk to him and get him to moderate his behaviour.
I am going to inspect 2 places tomorrow, and hopefully I will be able to make a choice of the best place.
In many ways my dad was a good father and husband – we were always fed and clothed properly, educated to the point of graduating high school, and if any one of us ever fell into financial difficulties, he helped out as much as he could. He did not drink, and his whole salary package was handed to my mom each month, he never kept a penny for himself. He respected me, even though I never kept quiet and told him what I thought, and strangely enough he accepted it from me, but never from my mom or some of my brothers! But then again, my mom told me that he really wanted me when I was born, but never any of the others. He never mentally abused me, but I saw what was going on, and I really resented and hated it! I also quickly learned to not say too much, for he quickly would turn against the others and put them through hell, especially my mom and my eldest brother. I just could not and still cannot, accept and understand how he could behave the way he did. At the end of her life, my mom could not handle him around her anymore, and resented him terribly.
It will take time, I know, and eventually, I will forgive him, for he never did me any harm, apart from his SD episodes, and there he is not in control of himself.
In reading your story, I realize that there where people in far worse positions than we were. I am glad that you were able to forgive, and hopefully I will be able to do so before my dad passes away. Thank you for your kind words.
Everything came to a head yesterday afternoon!
Since my dad had a bad fall three weeks ago, his agression has climbed steadily, and he has become more and amore uncontrollable. his bad periods started earlier and earlier every afternoon, and yesterday was a particularly bad one. He wanted to go home to the old house where we lived for many years, and no reasoning and trying to calm him down helped in any way. His day nurse Alna and I spent about an hour with him trying to calm him, trying to show him pictures, get his mind onto other things, but nothing worked. He tried to hit us with his walking stick, and although we took it away from him, he just tried different tactics. Having grown up with my dad, I could see the signs that he was working himself into a total rage, so I gave him a tranquiliser, which he took, but that only had an effect much later in the afternoon. When he started to try and break our fingers, and almost succeeded inbreaking my thumb in front of my daughter, that was the final drop to make the bucket overflow. I made him see that he was frightening my daughter who was watching everything, and as he looked at her and sneered, he grabbed my thumb and bent it backwards before I could stop him. The crack was audible in the kitchen, and my daughter simply lost it! She flew into him verbally, telling him exactly what she thought of him at that moment, which unfortunately did not help. I phoned our GP, who told me to take him straight to the hospital, where they would admit him, and monitor him.
The doctor then spoke to him when we got there, and afterwards she took me into another room and told me that he was totally senile and going through a “beserker” stage, and that we would not be able to take care of him at home any more, but that he now needed specialist care. Of course by the time we got him there, he had calmed down, but also because we told him a lie and said that we were only going to get his catheter changed, and then we would take him home.
I had already found a good care centre for him last week, but still need to get some legal documents completed. Then this happens! He will not be coming home any more, but will ge going into a place of safety for family respite, and from there he will be going straight into the home. He more than likely will be spending the rest of his time under sedation, but that will be for his and the staff’s protection.
My thumb is sprained, luckily not broken. I just feel so sad that we have been forced to do this, but in the long run it is the best that we could do. My family was suffering, not wanting to come home anymore, and he simply did not give me any choice.
I am so sorry and sad for you reading about this! So painful, in more ways than one. These diseases are so cruel that way, and seem to be effecting more and more people each month. I am really sorry your daughter had to see that, and for the reaction it produced. It is unfortunate that the GP couldn’t have advised you sooner that he needed outside care, but such things happen. You certainly did more than your share, beyond the best you could do! No one (that isn’t paid to) should have to put up with that kind of behavior.
This sounds so much like how my dad got, however he never lived with me (as I did not inherit a caregiver gene at all!). My dad got evicted from 2 assisted living homes for increasing violent behavior, until no one would take him and we had to dump him at the only hospital in his county that he’d not been to recently (meaning, all the other hospitals were familiar with him and would just discharge him after a couple hours). It was only by the grace of God that that last hospital was able to find a skilled nursing home to take him, albeit a few hundred miles away. But that was ok.
Facing that point when they can’t come home again is so difficult. I live in NM and my dad was in CA, so I had to deal with this remotely, and also flew out for a couple weeks to help with the first transition (which went well for a few weeks, then BAM!).
In the last place that took my dad, he spent the rest of his time under sedation too. No more midnight phone calls saying they were calling the police or taking him to the ER, with a frantic rundown of all the violent things he was doing. They could tell he was going downhill fast, so we just put him into hospice mode there, and within 4 months he passed away. I never got to speak to him or see him after the last placement, since he couldn’t figure out how to have a phone conversation, and he didn’t know who I was anymore. I think that that was mercy on the Lord’s part, to help spare us from some of the pain. The distance helped with that too. Everyone thinks they want to be with their loved one near the end, but I don’t believe it’s always the best case. It wasn’t for us. I would have confused and upset him even more, and I would have been a wreck. It was best to let the neutral professionals care for him. He wasn’t alone when he died, they were always right there. My dad had recently come to faith in the Lord, so I knew his suffering would soon be over.
If you are a Christ follower, He will will carry you through this turbulent time. My faith is the only thing that got me through. It all worked out for both our goods, just like He promised in His Word. God bless you and your family for your valiant attempts during an unworkable situation. Truly, you didn’t have a choice, I agree. Please let us know how it is going at the new home sometime.
I am glad to have a place to ask questions that my mother’s Dr.’s don’t seem to have frank answers to. My mother at 75 had a heart attack and a stroke a year ago and seem to have come back pretty well, but still needed some assistance with daily tasks so she moved in with my husband and me. Our kids are grown and out so we both retired early to enjoy travel and each other, so having her in our home is a major adjustment. Then we started hearing my mother having very loud conversations with someone at night, all night long. She would laugh and be very sweet to the people she was “talking” to. Last month her Dr. thought it would be a good idea to have her bad knee replaced since she had been having alot of pain and it was hampering her walking without a walker. She had her surgery and was on a morphine pump for 2 days. She went into a mental state like I have never seen before, from crowds of people and her room full of popcorn to being trapped in the hospital basement and frantic phone calls from her all hours of the night and day. Finally her nurses asked me to come stay with her so she won’t climb out of bed and hurt herself and her new knee, what a nightmare that was. We brought her home after 2 weeks of PT and had home health nurse and a Physical Therapist come. Now my mother’s mental state seemed to have become worse. She does not sleep at night for all the conversations and wandering around the house wanting a shower or thinking she is in the hospital and not eaten for days. She has even called the hosp. and her doctor and told them she is in her hosp. room and she has not gotten a tray for 3 days and is hungry. She eats very little and is forgetting I told her things and where she is. I took her to her Dr. and he put her in the hosp. again and her nerologist said it sounds like Sundowners Syndrome ,dementia and small sezures too. She had an MRI which was negative. I am at a loss what to do now to help her. Is there medication or therapy? I really don’t want to bring her back home just to sit in the house, nap, watch tv all day and be up all night. I love my mother and dread telling her I have to put her in a nursing home, the guilt would kill me. She has limited funds so I would think an assisted living facility might be out of the question. I am an only child and my father passed several years ago. I don’t know where to turn, what to do or who to contact. I have POA and she has a living will already. What’s next ?????
Gloria, so sorry to hear all this. I too am an only child who had POA for my dad. When my dad got to the stage your mom is at, we placed him in assisted living until his funds ran low (actually, he got evicted before that, but that is another story, see my other notes on this site!). My dad’s sundowner’s kicked in after back surgery, during which he also had a stroke. He already had dementia and Parkinson’s too. In my opinion, your mom is more advanced than you can handle in your home. I am hoping Lynda or other experts will chime in with their opinions too. Different people respond to different meds, so we could all suggest different things, but not sure how helpful that would be. For example, my dad was put on Ativan, Haldol, and a bunch of drugs that I can’t even remember now. Most of them didn’t work for him, and his docs were also pretty powerless to effect any positive changes. His condition deteriorated, and his funds ran low enough that we got him placed in a skilled nursing home (so that Medi-Cal, which is the same as MedicAid elsewhere, would pay for it). Eventually they put him in hospice mode and stopped most of his usual drugs, and kept him on different kinds of sedatives, sometimes resorting to restraints if needed. Very sad.
I recommend that you contact your local senior center or Alzheimer’s Association to get referrals to people and places that can help you. A Place For Mom was a lifesaver for me, I am sure they can help you too (www.aplaceformom.com). They are placement consultants, as well as overall eldercare experts. You can also talk to your local long term care ombudsman (look in yellow pages, government listings). Find out where your local MedicAid office is and start applying now, as it takes a long time to get approved. They only pay for skilled nursing (i.e. convalescent home), so assisted living sounds out of the question like you thought.
About the guilt…please read The 36 Hour Day by Nancy Mace and Peter Rabins. Excellent source for all aspects of caring for and dealing with people with dementing illness. This will help you with your guilt. I too promised my dad that I would never put him in a home, but I had no choice. You may not either. Someone told me that sometimes there is no good choice, but just the best that you can make at the time. Hope that helps you. These situations are beyond what family members can handle on their own. It will most likely get worse, and she may become less and less the person you knew and loved. That is how it happened for me. You will need detached professionals to help her. That is what they are there for. You can go to medicare.gov’s website and compare nursing homes. Here is the link: http://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteriaNEW.asp?version=default&browser=Firefox|4|WinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True
Most important of all, call upon your faith in the Lord if you have it. (If not, now is a good time to start, trust me!). Jesus Christ is the only thing that helped me get through my experience intact. He guided every step of the way. He will do the same for you. Please let us know what happens, and feel free to vent anytime. We get it, really.
I recently heard about this syndrome. I think my grandfather may be suffering from this but he refuses to go to the dr to get checked. At times he feels fine but at night he turns every single light on in the house and has this anger towards my grandmother. And its only with her. He insists that she has a boyfriend and he paces and seems restless at night. And recently we have been experiencing a lot of rain and he has mentioned twice that he feels weird when its cloudy outside. Has anyone experienced this with a loved one? Could it be the “darkness” of the sky thats making him anxious?
Kim, part of my dad’s symptoms also involved turning on all the lights at night, as well as extreme jealousy toward his female caregiver. He would tell me how she’s got another guy on the side (he thought he was her main guy, of course). He would ask her for her ID and act like he was the sheriff. He eventually fired her (and didn’t understand why she was packing up her stuff the next day). This was the last straw that prompted us to move him from his home, as he was edging toward the violent man he would become. Hope it doesn’t go that way with your grandfather, but be prepared for anything. I think the dark sky would definitely have an affect. I also don’t see why some seasonal affective disorder wouldn’t be thrown in to the mix. I am sure it doesn’t help, and that sunny and bright would be better.
My Mom is suffering from dimetia for the past three years. Lately I’ve noticed that she is confused about the time and is making breakfast at 9PM at night. She is constantly rearranging things and displays greeting cards from Christmas and Easter even though these holidays have past some months ago. It’s tormenting me to see this happen to her. I bring her to the Adler Clinic at Yale on a regular basis and I wonder if there’s anything I can do to help with this confusion?
My 60 yearold grandmother has been living with me for a little bit now after a month and a half in the hospital then a minth in a pphysical rehad do to a serious blood infection from a pace maker put in. shes been having wierd “fits” or “spells” at night such as calling me by another naming, thinking we live in alabama (we live in florida, but she did grew up in alabama) , forgetting she took her meds, wandering the house a all hours of the night, and the like. At first it was onlt happening once in a while then it went to a couple times a minth now its happing like 2 – 3 nights a week and there getting worse. Im so worried to mention it to her because shs all ready takibg it hard she had to start wearing diapers shes so worried about losibg her independence and I dont want to scare her. Because someone told me that sibce I have a 2 year old with leukemia im being “medically paranoid” and its probably just old age. But its starting to worry abd scare me because she trys to smoke n bed in forgets shes smoking, which we dobt even smoke inside, 4am cleaning ect. So it makes me worry she may hurt herself or may hurt soneone else by accident. I dont know what to do or even how to go about the whole thibg or if im even being paranoid”. Any advice anyone?
Narseis, You are not being paranoid.. that said.. you need to take some precautions.. if you can buy that smoke less cigarette that might help.. it is battery operated, I would remove all lighters.. you need to take her to a neurologist.. you need treatment and meds.. You need to have her mentally checked out, and a power of attorney both medical and financial.. so you can make some decisions. tell them what is happening. she is at that place where you ask her if she wants to go and she will say no. that is not an option. When you see the neurologist.. explain the information you gave us.. calling you by different names, doesn’t always no where she lives, etc.. document on a calendar.. daily what she says or does.. then take the calendar with you to the doctor… doctors are all about documentation.. keep a running email to yourself discribing the situations.. date each time you write.. date and time… God bless you and you are doing fine. Lynda
this whole scenerio with dementia has not been easy..i left my home,career and life to care for my mom with dementia..i have been doing this for three years..it appears that i will have to place my mother in a nursing home losing our home and modest assets. i will be going to a homeless shelter in our capital…everything whisked right from us,,cant keep personal belongings..how am i going to bring a cat and furniture to a shelter…nights are terrible. my mother is counting her money in her wallet over and over..counting her change..looking at her checkbook for hours over and over..she wont sleep nights..shes missing money she claims…i wish i had an alternative..she wont spend down..and is moaning at every bill i show her…she doesent even want to pay the taxes..this is not how i saw things for the future..around 8pm she starts the cuckoo period intill about 5-6 am.i tried my best..
To All: I Have a good friend Jim, who was a next door neighbor until he and his wife went to Alaska some years ago. about a month ago, Jim and his wife while in Alaska, got concerned about his elderly mother in California so he left his home and business in Alaska to care for His mother. Mother was diagnosed some years ago with Lupus and subsequently had a pain pump implanted to deal with Lupus issues. Shortly after Jim arrived at his mothers, he found out she was not goung to her pain Dr. to get her pain meds, He attempted many times to get her to her Dr. for medication, but Mother refused to go.
ENTER ISSUE # 1- (2 years ago), for that entire year, after she had called the police many times, and had made a total of 47 visits to her house that year, for various disturbances. We as next door neighbors, were accused by her, of shooting lazers at her through her roof, attic, ceiling, and into her bed to terrify her (every) night. This continued, even after Jim an his wife arrived to care for her last summer. His mother, who we, my wife and I, think she has had Sundowners Syndrome for some time now. After Jim’s dealing with all of the issues (mother won’t go to Dr.)(mother cursing at Jim) (mother refusing to leave house for any reason)(mother incessently complaining next door neighbor (Me),shooting Lazers at her every nite), Mid June Jim told me that he felt both helpless and trapped and after seeking help from many social agencies and workers, that he, with only Power of attorney, felt his only choice was to return to Alaska.
ENTER ISSUE # 2- Jim was accused by his Mother, and arrested by the Police, for grand theft. Jim was subsequently handcuffed and taken to Jail for theft. The charge was later changed to (Elder Abuse). Jim and wife’s only possesions- all money,clothes,trailer, are in impound til 8/4 . This is an example of what can happen when a child attempts to care for an elderly Parent with mental issues/(Sundowners Syndrome) I have known Jim for 26 years, and he would never HURT OR STEAL form anyone, let alone a Parent. Get Professional advice first. you wouldn’t want to be blind sided like this.
I am so sorry for Jim, sounds like he tried to do the right thing, This is a lesson to all, remember that there comes a time you become the parent.. as a parent you child says “No, I don’t want my 5yr old shots” you take them anyway… although we understand wanting to run away, if it is a child that is called abandoment.. turns out if it is an elderly with issues, it is abandoment… We are taught to respect our parents wishes, and when they have clear minds, as both of my parents had on the day they passed you must do that, but when they are mentally ill you are now the parent.. If they refuse you get assistance, get MEDICAL POWER OF ATTORNEY..so you can make appointments and trick them into going.. I don’t care if you have to say it is for an ice cream. Once in the parking lot, you bring the doctor out… and refuse to leave till he sees her/him. Just like with children you choose your battles, handle things you can handle without their opinions, and when it is a battle you MUST WIN, YOU WIN IT..if that means calling 911 and having them taken to ER for diagnosis. .. NOT getting their meds is a sign of not mentally well.. Don’t wait a year. A police record of number of calls because of her imagination is something a doctor could use to help with the diagnosis that she is incompetant to handle her own choices. Now if you call a social worker agency, don’t let them leave, till you have a plan.. If you are in an ER, have the doctor put in writing that they are not competenent, when you have it in hand see an attorney.. You can do a lot of things when you are in the hospital… before leaving.. ask that a social worker be assigned to her, to help you get the power of attorney you will need.. Once you leave the hospital, it is hard to get this help.. the hospital wants to send you home, if you say… I am not qualified to handle her illness alone, and REFUSE to leave the hospital.. you will get a social worker faster than your head will spin, it is a legal catch 22 and they will help… they will give you steps to getting power of attorneys, they will have home visits set up to help.. once they have you feeling confident , then go home, I am not an attorney, this is information I have used…. ask an attorney for help.. you can not abandon them at the hospital either.. .. you have to get a team… One thing is sure, you may want to run away.. I had many days with my mother in law and alzeheimers, but I also knew I had the child in her, and that was my responsibility.. If you have to leave and it is understandable.. you have to find someone to care for them, get them in a care facility and keep calling social services till someone helps you. If one does not give you the answers you need, and you can not afford an attorney, keep calling.. I appreciate the post on here, because it gives all of us food for thought. It sounds like Jim was trying to care for mom and listen to her as a mom.. I hope things work out for him, and his mom gets in a place that can care for her. It sounds like Jim didnt have medical power of attorney, or financial, and once a parent is sick this is harder to get , have these conversations with your families. Get advice from someone of knowledge if you are in this situation. Attorney, DSS, Department of AGEing, Thanks for posting the other side of a situation.
Lynda: I appreciate your response to my post and to attempt to supply an alternative (Medical Power of Attorney)To solve his delima in this perticular case. I have been reading the prerequsites in aquireing MPofA and California, The mother that Jim was trying to help, has to agree to his aquasition of the MPofA, before he could aquire one. His mother would definately have said NO WAY!!!. Unfortunately the longer Jim tried to help Mom, Jim found he was trapped in a (no win) situation. Jim did not want to leave his mother alone but the situation was affecting his marriage and all of his 7 brothers and sisters who FLED years ago, as mother had become so impossible to deal with. My heart reaches out to him and his wife, as he is trapped here in Ca. to try to get the charge of grand theft dismissed, as he is innocent of this. As you know, the wheels of the system can and usually move SLOWLY. The situation he is trapped in is SO BISSARE that he is affraid to go near the town he grew up in, for fear the police will find an excuse to re-arrest him. He is LIVING A NIGHTMARE and can’t wake up, and return to Alaska and put this behind them and get their lives back. I can’t for the life of me understand why when the police had made 47 visits that year, to her house to calm her down. Why they would not realize when talking to her that she was not rational. and issue a 5150 on her, to have her mental state evaluated, THAT WOULD HAVE GOTTEN HER (MEDICATION as well as PSYCHOLOGICAL HELP) and none of this would have ever happened. I don,t know if Jim will ever get this purged from his memory, because, as of now this is all he can think and talk about. The longer this drags on, the more it haunts him. I personally would not advise ANYONE to attempt to come in to the middle of Sundowners Syndrome, even with a parent without knowing exactly what to expect and especially if you have been away from that parent for an extended period of years so you don’t trapped like Jim did. Hindsight is ALWAYS 20 20 but my guess is, that Jim should have not told his mother he was leaveing, he should have notified a local sibling that he had to go back to Alaska to save his marriage and business,and left. QUESTION IS——- WHAT WOULD YOU HAVE DONE????. Thanks for your thoughts Jim’s situation. will
Dear William,
I have had Jim on my mind, he is in a terrible situation, I hope he can get good representation, and gets free. Yes, I have said many times, there are parents you need to leave to the professionals, and his is surely one of them. It reminds me of the movie Gas Light, he tried. There are abusive parents, and they don’t turn sweet as they get older. I very well might have made these same mistakes. There but by the Grace of God go I. Jim will not feel a stone thrown by me. I am glad he has a friend that truely knows the truth. My prayers are all of you. Thank you again William for sharing the other side of situation. Lynda
Lynda: Since adding my comments to this site, I have been unable to acces/read/find furthur comments/posts by anyone else and their experiences/challenges with sundowners. Did my comments/posts somehow lock me out to furthur site access??? Thanks Will
it shouldn’t. Look under older post.. It has been quite for a while.. but they are here.
My husband lost his job almost 3 yrs ago. He was sent home by HR bc some of his co-workers had heard him mention suicide and I know they only reported it bc they cared. He worked as a manager over 50 people for 23 years-same jobplace. He would come home and tell me that his boss was always on him about loosing parts or whatever. He always blamed someone else. You would just have to have known my husband 4 years ago. He shopped for the best clothes we could afford, took pride in his appearance. After he was sent home from work, the plant eventually closed. In the meantime, I took him to a phycologist (against his wishes) and he said the co-workers that reported this were lying. He was 54 years old at this time. I knew he was depredded-I went to sessions with him that didn’t seem to help. Then in June-09, he tried to kill himself with about 300 pills-ambien, zanax, high b/p pills-everything in the cabinet, then ran a bath and we just caught him in time before his mouth went under water. He never had to go on the ventilator. They pumped his stomach and he slept 3 days in ICU. We sent him to Brookwood rehab straight from the hospital for a week. He seemed better after his stay, but refused to take any meds for depression. He then started repeating himself alot, called one grandchild by another’s name-ask questions that were very strange-having memory loss about simple things-day of the week or what he ate for supper the night before. I took him to the Memory Loss Clinic in Birmingham and they ran a battery of tests. Doctor said he passed the test and MRI of the brain did not show anything. Months passed, he couldn’t find a job and truthfully, I don’t think he wanted to work. He began to drink beer during the day while I worked and I was very scared he would hurt himself or someone else accidentally. He always said that he could not sleep. Our family doctor and neurologist have put him on several different types of sleep meds. I even took him to the ER last month bc he hadn’t slep in three nights. we sent him to Stabler Clinic which was probably a mistake. All the other pts had alheimers and were very elderly. When he was released from there, they changed him to seroquel and trazadone for sleep. Now, he is abusing this drugs. I caught him taking (or about to take) 4 ambien and 4 zanax at one time. He sneaks and chugs beer, I have caught him. I have kept the medicicines hid for 2 years, but he seems to find them or get them elsewhere. This last weekend, I caught him again-demanded to know where he had hid the med bottle. He took me to it hid in a closet. He said that he had been taking that many all along to be able to sleep. He has had several falls and I always see a new scratch or bruise when I get home from work. I am about to the end of my patience. I am turning bitter toward him bc I am the one working and scraping by to pay our bills and he is here watching TV. I took him to our daughter’s house yesterday bc I can’t handle it anymore. It is affecting my job and I sure can’t loose that. She talked him into signing ppw making her the power of attorney. He goes Thursday to Kirkland Clinic for another assessment. Our money is running low due to medical bills. I have no savings left. I hate to do it, but I am filing for divorce and my daughter said she would get him diagnosed and help, for me to rest and not worry. He calls me all during the night, but he did that before if I was out of town for mandatory meetings for my company. Can anyone help me-him-our family?
Hi Cherry,
You have truely been trying to work this out, but it sounds like he has a mental illness without the right diagnosis therefore you are not getting the right treatment. However, you have to do what you need to. Has he been tested for schizophrenia, and such problems. Has he stayed anywhere for 30 days for diagnosis? I don’t think he knows why he is hiding the pills, or why he is really taking them, and is his thyroid right, to be up all night for nights.. has he had a full chemical work up? .. it sounds as though something in his body is making SPEED, and keeping him up. Yet some mental illnesses will do this to. I would want a 30 day stay in a hospital for stablization even if your daughter is handling it. You need sleep, cut your phone off, if you are burned out, you will handle things worse anyway. It is not the sleep that is the problem, it is a symptom of a bigger problem. What is making him not sleep, I would say to a hospital.. don’t give him pills to sleep, find out why his body is not letting him sleep. I hear you… Also find a representative from the AMI.. alliance for the mentally ill,, you need an advocate .. call AMI and ask for an ADVOCATE… You have done well, it is the sickness.. I will keep you in my thoughts and prayers.Lynda
Lynda,
My daughter has taken my husband to Kirkland Clinic today. They put him on Depakote, 2ml Zanax and a drug similiar to Haldol, I believe. He failed his memory test and/or mental testing. Dr. Clark said he believed him to have some sort of brain disease that is progressing rapidly since he had seen him 2 years ago. He goes back on Aug 4th for more tests. I don’t understand all of his, but I am going up to my daughter’s this weekend so we can have a family talk. The doctor told my husband he shouldn’t be driving and he hit the roof. He still thinks he is fine. Pray for us. I don’t exactly know where the AMI is. Where do I look for one?
Thanks
Cherry
Hi Cherry,
I am glad you have a doctor who is working on it, but if he gets too hard to handle, till they can find out what it is don’t put yourselves in danger. Is he agressive with your daughter, as long as he is not and she can cope great.. But, if this is coming on fast, it can turn worse fast. Have an imediate plan, then an emergency plan. http://nami-eastside.org/support/support.htm this is the website to I believe your local AMI. (alliance for the mentally ill) they have support groups and you are going to need their experience. they know the laws, and how to work around them in emergencies. When you go back to the doctors office ask him to help make a plan like (if her dad gets agressive with her what should we do besides call 911, is it in his file he has this problem, and can they find temporary mental health placement?). If your husband gets mad infront of the doctors that is good, it is a matter or record should you need it in the future. I am not a doctor , nor a lawyer and you need professional opinions. The support groups are great for getting information, they may have tricks on how they handle problems like this. I am sorry you are having such a time, and I am sorry for him, although it may be a blessing he doesn’t know anything is wrong. Don’t try to include him in your talks with your daughter , can someone take him out to dinner. Or can the two of you go out, and have someone visit with your husband. He will not understand and may think you are conspiring against him, and not realize you are both working in his best interest. He can not believe he is sick, no matter what you do, this is not like drug rehab intervention, his mind tells him he is well, and if you try to talk together he might just get mad. If you think he will listen and be part of his medical treatment that is your call. Please contact the support groups at AMI. I am glad they changed his meds, and I hope they work long enough to find out what the problem is. Hang in there, and God bless.. Lynda
My dad is 56 years old. Starting 2 years ago he was eating and I swear he had a stroke. Face drooping, couldn’t talk, walk or function in any way. After he was finally seen in the ER 2 hours later, he was a lot better. They checked him for everything. In the time since he has memory loss, tried to commit suicide, stumbles at times, slurred speech at times. He had slight change in his MRI but I guess not enough for some help. He tries to walk to store and buy beer, hide it in neighbors yards and disconnect gas line under house and about blow everybody up. He does some scary stuff sometimes and don’t know what he is doing. I finally got him in with a great clinic. I wish my daddy was well but he isn’t and I would live for someone to just try and help him. I am so scared he will hurt himself. He did not sleep at all last night and hasn’t slept today. Says he’s not sleepy tonight. He sometimes goes days without sleeping at all. Help?!?
I am so sorry Julie, Somehow each of us missed your post, Have things changed? Did you take your dad to a neurologist? His chemicals seem messed up after the stroke. Is he living with yoiu? Lynda
My 79 y/o husband has end stage CLL. He had chemotherapy 3 years ago to reduce his spleen. His spleen enlarged again with a 250,000 WBC. This time he started on the ‘chemo’ pill ,leukeran(2mg., 3 tabs daily). He has been on it since May. Recently, he had a period of confusion after being awake all night. This was very unusual. He is usually asleep by 9pm. He sleeps well,although awakens about 6am. During the night he was obsessed with the full moon thinking it a UFO. I reorientated him several times but he kept going back to it. He has never been confused before so I was stumped. By morning his confusion continued. He knew the President, the year and month but very confused to the events scheduled for the day, where he was to pick up grandchildren (no plans for it), where the package was he was to pick up a package, (there was none), where our daughter works a where to pick her up (a he had been doing all along.). I took him to ER but all his labs and CAT scan were normal. The Dr. thought it was Sundowner Syndrome. One of the symptoms of leukeran is confusion. His oncologist took him off it for a week. He is better but but still having problems remembering. What do you think?
HI Jean, Sounds like it might have been the meds, If it continues, see neurologist. Allergic reactions can cause allucinations, but I have been allergic to a med and still had to take it. Ask your doctor about benedryl with the med, see if it helps. Let me know how he is doing. Lynda
My 84-year old mother had bypass heart surgery this past Tuesday. Although, she is doing well physically, I got a call from the ICU nurse asking me to come to the hospital the night of her surgery. The nurse explained that my mom was confused and afraid and the nurse was concerned that my mother “might hurt herself”. When I got there she couldn’t understand why her “home” looked so different. I explained many times, but she was too altered to comprehend the reality of her logistics. She kept insisting that she needed to use the bathroom although she was catherized and when I explained she would say “well, I’ll have to hold it then”. In the morning she was improved only to slip into her confused state after dark. The next night I turned on more lights, although it was harsh fluorescent lighting, it seemed to lessen the shadowy, confusing environment. She is due to be discharged to rehab, where she will stay for her physical therapy to regain her strength. Yesterday, uncharacteristically, she had an episode during the afternoon. She remembers everything else, including details I had to think about to recall! It is this one block of time that she is confused about. I’ve noticed that when my mother is overwhelmed she has great confusion, such as the event of my father’s stroke 7-years ago, when he died. She still does not fully comprehend the series of events as they happened. I am hoping that when she returns to the familiarity of her home of 50-years, her confusion will be obliterated, but that remains to be seen. In the event that this is fully a result of “pump head” following bypass that required some time on the heart-lung machine during the surgery, my mom will require assisted living. The nurse helped her to the restroom the other day, whereupon, my mother had no idea why she was there. When she stood up (it was already late in the day and dark), she asked why we were in a different room. We were in the same ICU room she has been occupying for days. However, the lighting in the room DID make the room “look” different. Although, my mom is fully lucid the majority of the time, this seems to be a random kind of episodic occurence that could be dangerous if she were alone (which is the way she prefers living). In fact, she chose to stay at the nursing home for rehab rather than have “strangers” in her home. I am afraid that this change in her living situation (if, in fact, proves to be necessary), will be extremely difficult for her.
Hi Amy,
Things will change for your mom, even if she does well with this surgery. Having these episodes will create danger in her home. The thing about sundowners is it very well can come and go. I am guessing the doctors are monitoring her kidney function levels, feel free to ask. Did you get a medical and financial power of attorneys before this surgery? If not try to explain to her when she is in a good state that these might need to be done, incase she had any other problems in the future, because if this continues, you make sure the nurses document it, make sure the doctors discuss it with you.. get it on record. If you feel you are not set to take her home, or that she is not safe to go home alone, make sure you have a plan. Then when she goes home stay with her a few nights, because she might sound fine at 10am and be up at midnight till 3 am looking for her home, even when she is in it. You and your mom have moved into a new part of life. I am sure this is stressful and may become more stressful. Stay in touch, and read back post to help if something new pops up, please leave a note. Lynda
what happened with your mom? how did she do post op? was she able to go home? did she end up in the nursing home?
My mom just had an episode of diarrhea and abdominal pain. was in the hospital for a few days, by day 2 she was angry, confused. It was attributed to urine infection and hospital psychosis. She was given ativan to help with her anxiety which she takes at home. It made her very confused and she ended up having another CAT scan to rule out a stroke. She returned to normal. she knew everyone and understood where she was but was having difficulty verbalizing. Ultimately she was sent to nursing home for rehab. We have noticed that she becomes angry, confused in the evenings even combative to my sisters and myself. This is where we are and we hope she will be able to come home. as you mentioned she does not want any outsider in her home.
tell me how your story ends
thanks Diane
Dianne, Thank you for asking about my mother. I just got home from visiting her. she is in a nursing home and she had fallen and fractured her left pelvis, had a touch of pneumonia, a urinary tract infection etc. She is 93 and also has congestive heart failure. She has now been in the nursing home for a week. At first she was doing quite well with exercise but she seems to be getting more tired and has lost her appetite. She has a catheter because every time they take it out and put her on a commode she cannot go so it builds up. At this point I am wondering if it is because of her fractured pelvis. anyway, I do not know what will happen. Only a miracle will get her back to her assisted living. she has to be able to walk with her walker without help, be able to walk to the dining room and dress herself etc. So far she seems to exhausted to do it. She is very anxious (as I would be) We just pray for her recovery and also live the outcome to God. Again, thank you for asking. Sharon
Stay on top of the UTI situation… it causes anxiousness. So sorry to hear of your challenges, Lorri
My dad has emphazemia, copd, has had lung cancer six years ago and has had angioplasty. Most recently he had congested heart failure and was hospitalized for a week. Since he has been home and prossibly long before my dad becomes a very violent person at night. My mother will hide in the closet with her cell phone and call a family member crying because she is afraid he is going to hurt or kill her. He says mean things to her and swears all night long. A few nights ago, he put his fist through a wall. I have researched all his medications and can’t come up with a lodgical reason for his behavior. I feel sorry for both parents. My dad always says he is afraid to fall asleep because his doc told him he would die in his sleep. What can be done. What if he continues like this. We are all scared and concerned for both parents.
Sharon,
Your mom has every reason to be scared. You didnt say how old they are. Not that it matters a lot, your father is hallucinating and that alone makes him dangerous. Do whatever you need to , to protect your mom. Someone needs to stay with them, your father needs to see a neurologist, not about MRI issues but about behavior issues. Sundowners does not show up on an MRI. If he thinks he is in a war, or your mom is an intruder, she is in danger. Have his doctor help get him in somewhere for an evaluation. This is dangerous. Go the distance for your mom. I loved my dad with all my heart, I made him cry when I took his keys… I had never saw my dad like a child, but failure to do so would have been dangerous for someone else. My dad had perfect thinking, he was just on COPD, and it was posioning his lungs and he was falling asleep without notice, which is how he passed over, he leaned over and went to sleep. We have to step into the parent role now, and one of your darlings is in danger. The other is very sick. Help them both.. get your dad evaluated.. Call his doctor tell him your mom is in danger and what is going on… let me know how things go. Lynda
Hi, My mom has been diagnosed with Dementia. She is 80 yrs old and had a seizure about 20 months ago. The dementia symptoms started a few years ago, and has progressed slowly. She did take Aricept and Nemenda for a while, but said she did not want to take them anymore. After consulting with her Dr, he decided to take her off all meds. She did great for about a year, then, just recently started having other problems, Incontinence being one, and night waking and walking being the other. She would wake up and go to the room of the family members who were living with her, and stand over their bed. When they would wake, she would ask where she was, or say she just came to check on them. They would comfort her then she would find her way back to bed. Also, we could notice an ‘odor’ when we would visit, then one day I got a call at work from a family member who was there, saying “she just had an accident and could I come and help”. She did slightly wet herself, but refused to admit it. I was able to address that issue, and things were okay. The family members who were living there, moved, and some of us decided we could not leave mom at home alone. Two of us have been taking turns sleeping at her house, being woken up 3 – 6 times a night. Sometimes with her just getting up to go to the bathroom, others with her lost and wondering where everyone is, why cannot she just go home, how long has she lived her, and more. We took her to the dr, and found that yes, she had a UTI. Antibiotics cleared that up, but the night waking has not stopped. The dr did tell us it was sundowning. At least now we have a name to put with the behavior. Some members of the family think we are exacerbating the situation by sleeping there. I don’t think so. I can only imagine what would happen if we were not there. I have watched my mom go from someone who was always cooking, baking and canning to now not even knowing how to scramble an egg. She walks around her house, lost and confused. Her dog is her best companion. (dad passed away several years ago from a brain tumor). The dr just prescribed Haldol. We have not started it yet, however I will tonight. I am just afraid of how she will react to it. Is it going to cause her more problems? I am rambling but trying to express myself, and seek some guidance.
My late husband had dementia and had sundowning. The Dr had put him on Haldol and that made him worse. There is another med that is much better and not making the patient worse. Aricept is much better and He didn’t have the falling down that went with Haldol.
Good luck and God bless you and your mother.
Holly, Mom was on Aricept but it did nothing for her dementia or sundowning. The purpose of Aricept is to help slow the memory loss. She asked to be taken off of the Aricept as it was causing her depression. (we noticed the difference also) Since being off those meds, (Aricept and Namenda) she has perked up quite a bit.
Interesting how each med works differently on different people. I just wish there was a cure………. sighs with wishful thinking…….
Nancy,
I so understand your stiuation…my mom broke her first hip back in 2009 then later fractured her pelvis then has just within last 3 months broke her other hip. After her first break she was staying with my sister…then wanted to go home which after considerably arguments let her where she stayed for a couple of months before she fractured her pelvis which meant another stay with my sister who nursed her back to health then she came to live with me. She has a suite within our house. This July she fell breaking her other hip…went back to my sisters to recover and is now back with me. Since her last fall we have noticed considerable confusion…memory loss etc. I work and fix meals so all she has to do is put in microwave and have all her waters she has to drink a day set out and make her coffee and put in a thermos etc ect. She can no longer shower unless I am there and it takes a lot of time and effort to care for her. She is tired of living this way and I understand but am trying to keep her out of a nursing home. Her friends tell her how lucky she is and she hates hearing that and tells me so. It is very difficult but what else do you so? I hope your situation improves and good luck to you.
Please no one should use Haldol….terrible medicine….terrible side effects…my mother at 88 had that for 2 days in a hospital and she went crazy for weeks, not just saying crazy , went crazy . We finally could not handle her , put her in a nursing home and finally after 6 weeks she just woke up and said why am I here and what happened to me .Like a light bulb , on and off. She did not even know her name , went into paranoid states and had to be restrained at times.She would scream to everyone to help her , that we and the nurses were trying to kill her. She slept all day came alive at night, had to be force fed, diapers and would not keep her clothes on and would rock on her bed on her hands and knees. Never in my life have I seen a medicine effect someone like that. Research this medicine , it is not for normal elderly people. She now is 94 and has continued to live on her own , although she now is getting very frail , has home health and we are considering an assisted living. But she remembers none of those terrible weeks. I found out later it has terrible side effects on the elderly and is really used to subdue people in mental wards.
Carrie,
Just had a call from my Mom’s hospice case nurse. Mom is 95 going on 96 and the nurse told me that although a doctor had signed the script for Haldol that it was her experience (over 40 years of hospice nursing) that this drug was dangerous in the elderly. So she and the nurse pracitioner were changing to a different drug and a nurse would be checking on Mom in the HIC facility every day and the case nurse would call me on Monday to see how the meds were working. Since my Mom qualified for in home hospice care and because she deteriated to where it was not safe for me to keep her at home and because her condition is terminal, we were able to place her in a HIC facility. We could take her out at any time we see fit but why do so? A skilled nursing home is not needed and she couldn’t make it in an assisted living facilty. Also Medicate will pay for all supplies and medications relating to her terminal condition. In Mom’s case that is nearly everything except for her thyroid and fentynal patche. Medicare and her secondary insurance pay for those except for a small copay. Thank God you found out about the Haldol I know I do!
My dad went crazy after haldol to the point of fighting us trying to rip out his iv,s demanding to leave the hospital. Its a very baddrug that needs to be taken off the market
My mom is 87 and does the exact same thing. We stay overnight 5 nights a week, but since we all work also, want to be with our families on the weekend. Last night (Sat) I called Mom to see how she was doing and my sister was over there, apparently mom had called her and didn’t want to be alone. She walks at night, checks on whomever is there, and wants to go home to “live in the other house where there were lots of people”. She’s never been the best mother, having 5 children with essentially no man in sight left her little time for her children, so now we are left to take care of her and as you can imagine there’s a lot of resentment along with the other emotional feelings of taking care of someone who is essentially crazy. We want to take care of her, but now realize we have to get an “outsider” involved since we can not be there on Sat & Sun. We have one sibling who is lemon and does nothing. She and I have had a falling out and haven’t spoken for two years. I’m thinking of calling her and offering her money to go over to mom’s on Sat & Sun night, hoping that money (which of course being the lemon she never has), and getting our relationship back on track will be an incentive enough to help our mom. Sorry for rambling, but your e-mail really struck a cord. This is the worst thing I’ve ever been through, I’ve always worried about losing my mom probably because she’s never been there and no father. I’ve been going to a counselor trying to get my feelings sorted out, at this point, since everyone my mother really loved – all her siblings and of course mother has passed over, I’m wondering if “going home” means she’s ready to go, it’s all so confusing and heartbreaking. If you have time to e-mail with any good tidbits, I’d been grateful.
Sincerely,
Debbie
Hello Nancy my name is Leslie. I have been taking care of my boyfriends dad who had a massive stroke almost a year ago. He to was very independent. We last week got the same diagnosis. And are up several times a night with him too. Sundowners is real and it will get worse. The one thing I do know is try it and if it doesnt work then stop it. It has helped us and he seems to be doing better. He got to the point where he would just snap and start hitting. Dont listen to other family and just do the best you can. My advice is follow your heart…listen to the dr. and take care of you. I hope this helps as we were desperate too but please just try it I think it will help your mom. God bless and good luck! p.s. as for the uti push water! Lots and lots of water!!
Oh one more thing that worked for me get a radio and turn it down very low just enough to barely hear it. He never liked music but it gives noise and he doesnt wake up every couple hours any more we now get 5 to 6 hours almost every night!. HUGE CHANGE OVERNIGHT! Research white noise for children or infants. MY DAUGHTER HAS A 3 YEAR OLD AND THIS IDEA CAME FROM HER!
Thank you Leslie. She usually has her TV on all night. She has Tinnitus and with the ringing in her ears, she has to have a noise around her at all times. (I have it too and it is terrible) Haldol seems to be working for her so far. She is sleeping longer hours with short “potty breaks” that are not disturbing to anyone but her, and really she does not remember them the next day.
My husband has demitia and I was up all night with him last night. Does anyone think maybe the dr will give Os a sleeping pill ???
The dr has told me about his condition only a week ago. He is 85 and I am 53. This is all new to me because nobody in my family has had this dementia disease. But I need sleep. Please give me some pointers to help.
Shirley,
With your husband being 85 and having dementia, I do not see why a dr would not give something. Be sure to see a Geriatric Dr, as they have a much better understanding of the elderly. The one we take mom to is amazing. They are so patient and understanding with her. Dementia is very real, as is sundowning. Please update on what you find out. I wish you the best.
Hello to all of you, my name is Leanne and I am a caregiver for the elderly, sundowners and dementia is very real, and can have long term and heartbreaking consequences for you family caregivers as well. Tho i cannot and will not push any kind of medication as each person is an individual and medication effects everyone differently, I do suggest getting help from as many people as you can, and taking frequent breaks, one very basic lesson is you cannot do it all!!!
leanne,
thanks for your words. I have been taking care of my 88 yr old mother who has been bed ridden since january of 2010. She was diagnosed with dementia since mid 2009. What scares me now is for the past 2 weeks she has been talking about these 2 korean boys ages 3 and 8. She talks in detail of their visits. At first I just took it as a dream but every day she tells me more about them and their family, I mean in detail, example: their parents finally moved here from korea, their mother has cancer, they cant wait to go to school. they go downstairs and visit my son, My mother was so worried about these boys one day that she started crying . She said they were outside and whe wanted me to make sure they were ok. She talks so clearly about this , not confused or disoriented. This is so real to her. Your words to take a break helped me relize that i can only do what i am already doing. Please e-mail me if you have any other advise. blackrose181@att.net Thanks again
Nancy I hope things get better for you…I know how frustrating it is. I live with my Mom and its sounds like my nights are just like yours. Mom is on no medications at this point…She will sleep good from about 4am -12 pm
Lisa
I have a similar situation. My elderly Mom is in a nursing home. The sundown is getting worse. they have tried trazadone, amoung other meds, at high dosages and it causes hallucinations but no sleep. They now want to try resperital (anti psychotic for schitzophrenia), she is not schitzo, but has alzeimers and dementia, up all night.
where do I go to get home care for 24/7? Is it covered by medicare?Medicaid?. My heart tells me to take her come and stop all these meds.
Any suggestions?
Our mother has been in rehab for the past 3 months following 2 falls and a partial hip replacement. One week ago she finally got the go-ahead from her surgeon for full weight bearing and come Tuesday the Rehab Center wanted her to go back to her Assisted Living since Medicare would no longer pay. They initially gave us 2 days but we insisted that we weren’t comfortable with that and could we pls put it off for a few days to make sure she was ready. We were doing that (and paying over $300/day) and last night we got a call that she had fallen again (2nd time since she went into rehab) and that she was extremely confused because of the sundowners. What do we do? I really don’t think she’s ready for Assisted Living but she was so anxious to get out of the Nursing/Rehab Center.
Nancy~
It has been, somewhat, comforting to read your email, as well as others’ comments. My grandmother was recently diagnosed w/Sun-downers Syndrome. She is roaming, during the night, at the nursing home. She has also shown more aggression, after 4:00pm. We are sending her to a place that specializes in treating people, like my grandmother………who was a kind, caring person all of her life, until the dementia hit. There, they detox them of their meds, and start fresh, to try and treat them. Their goal is to stop the roaming @ night. The patient may stay from 3 to 14 days. I’m not sure exactly what the success rates are, but, this is all we know to do. She is mobile, and strong, so she won’t be able to stay at the nursing home, if this doesn’t work. Also, if it doesn’t work, I don’t know what we will do. Prayers to you and your family.
Jacquie
Jacquie
I have the same situation with my mom. The nursing home has tried so many different, many of which she is still on but are not working. Where are they taking her to detox and begin again. Is it a geriatric dementia phys ward? that’s where they want to take my mom. The problem here is they don’t want her back so I’m hesitant to let her go. Although they can hold the bed for 10 days, the nursing home has a right to screen her at the end of ten days and not let her back in. Moving again is too confusing to her.
If anyone has any suggestions I would greatly appreciate it.
Hello All – My sister has terminal brain cancer from a brain tumor and she is in a nursing home now. She is only 58 yrs. old and suffered a stroke the beginning of August 2011. She is paralyzed on the left side of her body and needs a 2 person assist when transferring. She has had sundowners sydrome for approximately one month now. She gets breakfast and dinner mixed up and insists on coffee at 3 a.m. I stay over with her sometimes at the nursing home and when she wakes up at 3 a.m. and rings for the nurse to bring her coffee, I have some too and we also indulge in cookies. After that we go back to sleep and wait for coffee again at 7 a.m. Sometimes she’ll insist it’s time for supper at that time and wonders why we’re having breakfast food. I never realized there was a name for this. The other day I wheeled her outside in the evening after dinner and we watched the sun go down. Believe it or not she seemed to get back on track that night and knew it was time for bed and time to sleep for a while. The next day she was ‘off’ again, but at least for that night, she was on track for a while. She was diagnosed almost 1 yr. ago with this rare tumor. It is probably almost the end of her time, but she fought hard. There is nothing anyone can do for her now except treat her pain. Thanks for the information on sundowners.
Hi Sue,
Just read your comments. I just went on this site for a neighbor to find information. My heart goes out to you in dealing with your sister esp. at her young age. I am 59 and just lost a brother age 62 to prostate cancer. Sometimes life is not fair. Not sure if your sister is still with you or not but I am wishing you all the best.
Anne
My dad has had Parkinsons and dementia associated with it for approx. 6yrs. Within the last 11/2 weeks he has had a sever downturn. He was hospitalized and just yesterday we put him in a nursing home for rehab. Around 5-6 pm. is when he starts having his delusions, and out burst. Though my mom is with him he seems to target me with all his anger, saying some pretty harsh things, accusing me of alot of things. He sees bugs everywhere and is convienced there is a “man” out to get him if he tells about the bugs. This is all new to us so I am trying to learn to deal with it. It’s hard watching your loved one not understand what’s happening to them…..
Jovona, I have seen the same symptoms from the side effects of Haldol. Is he on Haldol? A man I cared for saw bugs and it was so real to him. Once off the Haldol, he was fine. Ruth
Parkinsons in and of itself does NOT affect the mind-at least not for years.
BUT the medicines, especilly the “adjunct” medicines CAN CAUSE HALLUCINATIONS.
Please have the doctor remove some of the meds, and see if he gets his mind back.
It is better to be stiffer in body than to be out of your mind.
My mother fell yesterday and fractured a bone in her pelvis. At night she is very agitated and crying. she is hearing music etc. and very confused. She is pretty good during the day. My brother just called and she is in bad shape tonight crying again. I cannot get up there the next two days as we need to go to Maine for a funeral for my brother in law. Help ?
Hi Sharon – I sympathize with your situation. I live 5 hrs. from my sister who is in the last stage of a rare brain tumor. Our family has been dealing with this for 10 months now – since my sister’s diagnosis. One thing I have learned is that one cannot be in two places at one time. I have logged many, many miles on my car traveling to visit her, and then back to my home where I have a husband, a daughter and a grandchild. No sooner do I get home and I’m back on the road to see my sister again. I do my best. My sister doesn’t have much time left, so now I spend more time with her. We do what we can do. There was a time during these past 10 months when the distance stressed me out. I had to let it go and do the best I can considering this huge obstacle. Our loved ones know we’ll get there and in the meantime put trust in your other family members to ‘hold down the fort’ til you can get there again.
A male friend of mine is a nurse who recently had a patient in her early 80′s and was in for a conscious sedation procedure, to fix a complication from a leg injury, she has been on pain meds outside of the hospital for an extended period of time. She made some comments in the evening showing confusion, then this patient made WILD, very specific and descriptive claims that sexual abuse was carried out by her male nurse on the night he cared for her in the hospital, (of course, she didn’t report this for 5 days)…… Is it possible that she was experiencing sundowners? Her claims are completely false, so I am trying to figure out if she was lying or just experiencing dementia or something of the sort…..
i am looking after my mother in law with the help of my husband she is 88yrs old and suffers from vascular dementia.she went in to hospital with a fractured hip, was in for 14weeks,she is now home but does not sleep at night (prior to hip replacement she would sleep from 8pm until 8am)she calls out for help all the time during the night and is up about 4-5 times to use the toilet she only gets about 2 hour sleep at anyone time which is very hard then come 6am she will go out like a light and sleep for a few hours.we have tried her on different medication but nothing seems to work,we have tried zoplicone risperidone and tempazipam.
Hi Anne,
I hear you are having a time, yes Sundowners mixes up days and nights. Nights terrors are so bad they can’t sleep the the sun comes up. You need to see a neurologist. This is a special problem and needs the right person. As you look back through the older post, you might find other meds that might help. Lactulous was a surprise that it helped. She may not change these behaviors. You might need to call in back up. God bless and keep you strong.
I am truly touched by all of your stories… I have a grandmother who has suddenly started developing symptoms of Sundowning.. It is very scary because she cries, thinks she sees people in the house and freaks out. She has not been diagnosed yet but we will have her evaluated soon.. Is there any natural remedy that can be used other than medication?
If she is going to be up and scared, try entertaining her , pick her favorite shows and run them at night on low volume. Also have her kidneys checked , if amonia builds up it can cause side effects. things that remove amonia can help some. I have no idea why, and sometimes it doesn’t help at all. My mother in law had a picture of babies in her room, she heard one crying all the time, and it was so sad she cried with it… I removed the picture, but she still dreamed. When hospice came in they helped. Know we care and understand. Lynda
My grandfather was just diagnosed with congestive heart failure. He has been in the hospital for about 5 days. Last night he started acting really paranoid. He didn’t believe he was in a real hospital, he thought the whole thing was a scam. Today he was talking about being kidnapped. When I alerted the nurse she tried to tell me that people of his age get confused and that it’s normal. I’m thinking that this nurse is an idiot. He was just fine the day before yesterday, he understood where he was and why he was there. Now it’s like him against the world. I just don’t understand what has happened!!! Can dementia just keep up on you like that? Then I thought maybe they put him on a new medication that I don’t know about, that could be causing paranoia. Or maybe it’s because he was taking Prozac every night at home, with no apparent side effects, because he was asleep and now (in the hospital) maybe he is taking it during the day so we are able to see the side effects??? Does anyone have any thoughts or advice. This is so hard to understand. He is one of the most level head men I know and now he being totally unrational. He did a 180 in a matter of 2 days.
My father who is 94 yrs. old now had a stay in the hospital this past summer. He had fallen and was too weak to get up himself. My mother called 911 and because my father’s pulse and b/p was so low, he ended up in the hospital for tests. The first night there he awoke at 11 pm and started yelling at ‘people who were in his room’ and demanding that they all get out of his house! The nurse came in and told my dad that there was no need to worry, that no one was in his room. He insisted that there were many people in his house and he demanded the police be called immediately. Now, a few months later, he still recalls that he envisioned this and that it was very real. He even laughs about it. I realize now he was ‘sundowning’ that night. He didn’t have another episode after that that I know of. He shows no sign of dementia, but he does have parkinson’s. Tests showed his red blood platelets were low and they gave him a transfusion (or two) and he is now off coumidin which was causing internal bleeding.
I have commented above in regards to my sister who is nearing the end stage of a brain tumor. She has sundowners everyday and night. It is always with her. She has been hospitalized since early August and started sundowning early September. It’s just been steadily getting worse as time goes by. She is heavily sedated now because of it.
Yes to all the above., Who has medical power of attorney, find out they need to be in charge. 2. Make sure he is getting his Prozac at night, and they have not forgot to give it to him. 3. Kidney failure can cause this real quick.. ask how his kidneys’s are doing, tell them you want a blood work up done, and you want to see the results. 4. If no one is listening to you , ask for a patient advocate.. 5. Sundowners can come on in the hospital with elderly, it comes with bad dreams, so he may feel kidnapped. for someone to just say this is normal is not an appropriete answer. Let them know loudly , he had his mental ability before coming in and you want answers. 6. ask for a neurologist referral. the meds he is on need to be monitored by a neurologist, not an GENERAL practictioner. (spelling) , You say he is your grandfather, how old is he? .. He can not go home alone, make sure there is a care plan for him. If they try to release him in this condition, let them know he was not in this condition before he came in, and more answers will be needed before you take him home. Now.. that said.. Read some of the old post, and see if you relate to anything.. There is a lot of information you may need on here. thinking of you.. lynda
My Dad has sundowners. He is already on Namenda and Exelon. Does someone have experience with a med that helps for sundowners?
Susan,
We are using Haldol for my mom, as well as a Xanax earlier in the day, and in the morning when she wakes up. Her sundowning lasts from about 6pm to 8 am. She also takes Trazadone. Her confusion is not gone, or really a lot better, she just sleeps more steady and is not up and worried as much during the night. We are exploring a new option we just found out, and that is at our University Hospital they have a Cognitive Disorders Clinic that we are getting a referral from her dr to take her to. Not only do they work with the patient, but the family as well. They offer support groups for the care givers, and I can tell you, we need it. Mom has progressed quickly the last few months and it is taking me and my siblings by surprise at how fast things are moving.
One thing I will add, my mom did not do well on the Exelon patch. It works different for everyone.
Best wishes to ou and your Dad.. Please post as to how things are going.
Hi,
A nurse told my mom today that my dad might have the beginnings of Alzheimer’s or dementia. He’s 67 years old, and has been in ICU for almost a week. The reason he’s in the hospital is because he was being treated for heart-burn, but a week ago he woke and couldn’t breathe.
Therefore my mom took him to the emergency room, and the emergency room doctor discovered he has four blood clots (two in his lungs and one in each leg) + pneumonia.
The very first night he was in the hospital his behavior changed drastically, he went from being a very kind gentleman to being a monster.
The nurses had to tie him to his bed, and he remained in ICU for six days. However, he’s still acting very confused, and is threatening the nurses. He’s fine when my mom is there, but she has a broken foot, and can’t stay with him around the clock. I live over four hours away, and am sick. It would be nice to go and see him, but I’m afraid he’ll catch my cold. He also refuses to have any sitters in the room with him.
Does anyone think he might have the beginnings of Alzheimer’s or dementia…one nurse also did tell me he might be a sun-downer.
Thanks,
Hi Ron,
Did your dad not show any signs of confusion before going into the hospital? You might want to look into allergic reactions to cumadine, and lovaloc (not sure of my spelling) they are blood thinners. 1 in a million are allergic to these and one of the side effects is anger. There is an alternative med. Benadryl will help a little but not a lot. Look into this, You do not wake up one day with alzehimers, it is a slow progress, it can move fast, but not a 24 hour thing, so there should have been other signs. Sundowners can come on quick, but look into the reaction, and ask a neurologist see him. That first night sounds like it came on quick, which is when they would have given him blood thinners. so.. 1. ask about reaction to blood thinners, it is very rare, but happens and the doctors might not believe that is it at first, but you have the RIGHT to refuse a treatment and request a different one. If it is the blood thinners, even if you change types that are arsnic free, it will take a few days to clear his system. 2. It might be sundowners, and if so you need a neurologist to administer meds. Your dad is mentally miserable. Any meds will help. 3. If the doctors don’t listen get a patient advocate. 4. If your dad is not in his right mind have a doctor say so, and make sure you mom or someone has medical power of attorney. I hope things get better for all of you. I hate you are so far away from your mom and dad, as it sounds like they have entered a time when they need help more. Don’t try and take over, just assist your mom, respect her and him. I am not an attorney nor in the medical field, I have a lot of life experience, but These are just things I have seen happen, and would want you to check into. God Bless and keep you all in his care.
Hi Lynda,
My dad did show signs of confusion about sixteen years ago…he had a hip replacement. While recovering from the hip operation a fatty embolism broke loose and passed through his brain. He ended up in ICU for three weeks in a coma, but could hear everything around him. A nurse told my mom and me “your dad / husband will probably not get any better; you need to start looking into placing him into a home” my dad heard this nurse say these things.
My mom and I immediately told his doctor what the nurse had said, and the doc. was furious. The doc. told us there was no reason to believe he’ll not have a full recovery, but there was a two to three percent chance he wouldn’t. However, he did eventually come out of the coma, and was very confused. The doctor released him from the hospital after five weeks, and he was still a bit confused until he got home. Once he got home and was able to sleep in his own bed for a couple days, the confusion went completely away.
This time is very similar, but he is now on his way to a full recovery. The doctor released him today, and he’s back home with my mom. However, my mom has convinced him the reason I didn’t visit was because I didn’t love him not because his doctor and nurse told me to stay away with the bad cold I had.
My mom is a bit confused…she’s always been confused her entire life. She wasn’t a very good mother to me, and she’s good at convincing him of certain things for a while. I’m certain he’s still a bit confused, and she’s using it to her advantage…my mom is a very jealous person. She’s extremely selfish and my dad is very, very giving…therefore, lots of people have been coming around during his sickness to help. She can’t punish him for the care people show him, but she’s punishing me now, and refuses to let me talk to him on the phone.
Realizing this has nothing to do with my dad being a sundowner or having dementia, but hopefully it helps you to better understand (what could be some of his confusion). He’s always tried to make her happy in life, and settle arguments + always takes her side in most cases.
Although, he did tell me when I was in my twenties “son I love you more than I could any child in the world, but you do realize your mother is a bit crazy?” I have always taken that to mean he’s sorry for the way he’s treated me.
My mom doesn’t need power of attorney, but I’d never try to get him to give it to me. She’d have a fit and make his life a living hell once I left.
Thanks for your advice,
Thank you for your great advise and concern. My brother, who lives in Davis, CA has power of attorney at my mom’s preference. However, his advise from CA was not very relevant to the situation at home and served to add to the stress for me. My mom recovered physically very well and was discharged to a nursing home of her choice for a few days of rehab. Her brother and his wife live very nearby and were lifesavers in many ways, but also made it difficult for me in getting the “real” story. I have mixed connective tissue disease and managed to acquire a head cold by the time my mom was discharged from the hospital. I did not go into the nursing home, as her stay was to be brief and I did not want to compromise others at the nursing home. I called my mom, who told me she wanted out of the nursing home as the physical therapists hurt her shoulder and would not allow her to “pass” on therapy. I arranged to go get her the next day per her decision and in talking with her doctor, his approval. I then encountered much opposition from my brother in CA and my aunt and uncle. They told me my mom wanted to stay (in fact a few days longer than prescribed). Since I knew firsthand that my mom was having sundowner symptoms while in the hospital, but sounded completely lucid while talking with her at the nursing home, (she was not returning my calls at this point), I, basically, undid everything I’d done that day to secure her release the following day. I could only assume that my mother was telling me one thing and everyone else, including the nursing home staff, something else. This situation caused me a great deal of anxiety with second-guessing. After the fact, my brother emailed me to say “well, you were right. Mom doesn’t want to stay”. As she only had one more full day, I let it be. She came home and refused my aunt’s plans to stay with her for a few days. My mother has always been difficult, hard to please yet not forthright in her desires. It makes helping her very difficult. I have to try to decipher between the lines what she really wants. This is not new, but it creates a great deal of anxiety now. She is not driving any longer. I finally called her, as I knew I’d wait forever to hear from her and I took her to the grocery store and pharmacy. She remembers details about everything before her surgery without hesitation. She does not remember much of the stay in the hospital. She is very aware of everything happening around her now. However, I notice she is “childlike” in some respects she was not prior to the surgery. For example, the visiting nurse was a source of great aggravation for my mother. She made the statement to me that the nurse was insistent about keeping her appointments to monitor mom’s vitals. My mother said the nurse never came at a “convenient” time. My mother has no pressing appointments, needless to say. The nurse maintains a strict schedule on all of her assignations. My mother doesn’t seem to understand or care about this fact.
When I took her to the pharmacy and grocery store, she headed for the things on her list. She wanted sweet potatoes, as she is inflexible with her eating and has one nearly everyday. The stocker was trying to add to the bin in the store and my mother, without hesitation, got in his way, instead of waiting a moment, until the young man stepped away and let her have at it. Normally, my mom has always been reticent and overly compensating, but she seems to have lost some of her impulse control. I noticed some people at the store stopping and observing her quietly, not saying anything, but looking at me as if to say “what’s wrong?”
All in all, she is very lucid, though and remembers everything from the past. The surgery has changed her to a degree, but it is difficult to say if it was the anesthesia, the bypass, or just the trauma of the whole ordeal. She seems fixated on her scar beyond what my mom would have been in the past. She states that “had she known how traumatic it would be, she would not have done it”. I reminded my mom what the doctor told her would happen if she hadn’t. He described a rapid decline, trips to the hospital, and intubation, which I believe is true. I do not believe she would choose to suffer in that way.
My relationship with my mother was troubled once I reached my teens. I was estranged for many years as she disliked my first husband and would not attend my wedding. She and my father travelled to Jamaica for my brother’s wedding. Despite the fact that I always help her in any situation, at any time, she remains somewhat disapproving. It seems the best I can do is honor her wishes to leave her alone unless she asks me for help. Otherwise, she interprets anything else as intrusive. I was laid off, due to the economy, two-weeks after my divorce was finalized. I have an 8-year old Scottish Terrier as my companion now. I offered to help her, even move in with her if she wanted that, but she is concerned that my dog might pee on her carpets. Eventually, when I can no longer afford my rent, as I remain unemployed for over a year now, she advised I check into a shelter, which means I may have to find a good home for my Scottie (possibly they allow for pets, though). So, it is with great relief that my mother is able to remain independent. Thank you kindly for your help and concern.
One question I have is this. Is it common for the elderly to continue to lose weight following surgery? My mom’s normal weight was 130 lbs, but she lost weight as her heart condition accelerated and went down to 115 lbs and since her surgery, has plummeted to 108 lbs. She claims she just is not hungry. Thank you for your help.
A Becherer
The moral to all of these stories seem to be that anyone over 55 needs to buy long term care insurance.
I was taking care of my mother (end stage emphysema) on hospice and it nearly killed me trying to take care of her, 2 children under 10, and work 2 jobs. She also became quite demanding with her meals and tv shows even though she saw I was running around. Meanwhile, she was improving and walking around the house and I was physically and mentally exhausted all the while claiming she didn’t want to “be a burden”.
She ended up falling and breaking her hip and she dislocated it shortly after that in rehab, also has severe short term memory loss developing and sundowner’s syndrome. Called me last night from the nursing home to pick her up and that she couldn’t stand it anymore. However, she doesn’t participate in anything, and it is truly one of the nicest nursing homes I’ve seen (and I’m in the medical field and have seen my share of them).
A few tips for the future aging parents
–Don’t rely on your children to take care of you when you grow old and unable to take care of yourself–a few months here or there is doable, but it’s a big burden, especially when they are trying to raise children and have a life of their own.
Don’t say, it’s my life and I’ll do whatever I want, and then depend on your children when you are embracing bad health choices (i.e. smoking, excessive eating, etc).
- Don’t think you’re just going to die in your sleep one day at home, that rarely happens.
- Do buy some type of long term care insurance–this way, you can be care for at home–your $1500 a month wont’ pay for your aging house which is in need of serious repairs, nor will it take care of a part-time caregiver.
I’ve learned that I don’t want to be placed in an environment where they are at liberty to just drug you. When you are placed in a nursing home, assisted living home or an alzheimer’s unit it appears to me that you turn over your well being to those who treat you like a number. Finding someone to treat you the way they would want to be treated is the key — to me that’s family or a Christian home where life is treated with respect and dignity.
Life is a choice, My GreatAunt took care of my great grandmother, when she came home from Africa as a missionary, My Grandmother took care of my Aunt, while working full time and raising 4 grandchildren, My mother took care of her mother and her dad with the loving help of 3 of those grandchildren and her own children, My sister and I took care of our Mom and Dad 4 years around the clock.. Life is choice, and our family sees it differently , but our family enjoy each others company, we laughed and smiled and each one of them said thank you on the day they died.. Everyone of them.. So sometimes it is the family that enjoys taking care of them that would not want them anywhere else but by my side. I can see that your family truely needs an insurance policy to releave the burden, we didn’t see a burden. I also took care of my mother in law for 4 years with alzheimers. Every one of these minus the first, passed away here at home in the house I lay down each night in. The house my grandfather built. We were blessed to be the caregivers. It is not a job for all.. But for me and Mine we were blessed.. We got up each day with our best friends, and I understand families are different, I respect those who need a team to assist, they were in different situations than I, I respect some parents reap the seeds they sowed, yet some children work past forgiveness and still care for them. I respect your choice, and can see how you needed to just voice your stress. We understand stress. I am glad you found a good home for your mom, and I can see how she could push you to wits end. But, I think the moral of this story , is respect each persons decision, and some children will truely enjoy the company of their aging parents. It is a conversation they should have.
Mi hermana actualmente tiene 50 años, desde hace un tiempo para aca empezo a presentar convulsiones y le diagnosticaron hepilepsia, y en los útimos daños se le ha presentado un problema mental. Cuando esta en crisis se empeña que esta mi madre ya fallecida y se comporta en gesto y voz como una niña. Tanto el neurologo como espsiquiatra estan al tanto de esto, ellos la medican, pero cada dÃa las crisis son mas seguida. Que puedo hacer por ella? Necesito de su ayuda por favor¡
-Translation-
My sister is 50 years old now, for some time now began to have seizures and was diagnosed hepilepsia, and the latter one submitted damage a mental problem. When in crisis insists that my mother died and behaves in gesture and voice as a child. Both the neurologist and espsiquiatra are aware of them, medicate them, but every day more crises are followed. I can do for her? I need your help please
My Dear Nelly,
I can hear you pain , and your heart breaking. I am so sorry your sister is going through this. The brain damage is so hard to deal with , it can change a person’s complete behavior , you can not change what is happening, you can only deal with the best way you can. Don’t argue with her, that will only make things worse and She Will Not.. understand. So don’t waste your precious time together arguing. If she is a child, you will need to become a comforting parent. Make her feel safe. If she wants jello at every meal that is ok. She is on a journey, and you can only assist. Keep her as comfortable and happy as you can. if she becomes stressed over something not real, don’t argue it is Real To Her. When she believes she is a child and her mommy died, comfort her. .. Now.. ask the doctors if there is another med, maybe another med will work better than the one you are getting. Ask them to try another. Is she sleeping? Is her area safe,? put a baby monitor in there if you need to .. Never be disrespectful, she can not help what is happening to her, if she had a choice ,it would not be this way. Sometimes the meds she is own have strange side effects , read them so when you speak with her doctor, he understands you are educated on her care. Please get medical power of attorney, look online if you need to for the forms. I am not an attorney, but I know you need this to represent her in a hospital setting. Get her neurologist to assist if you need to . If she is in a hospital, ask for patients assistance to help you with this . Most hospitals have people to help with this type of thing. I will think of you often. I hope someone else has more advise. .. Make sure you get rest… and a break from the stress if possible.. Lynda
Just a few comments. My 95 year old soon to be 96 year old mother was diagnosed back in February with end stage congestive heart disease. The pulmonary specialist that was called in at that hospitalization recommended that we check out in home hospice care as she was not going to get better and this was a terminal condition and he expected a life term of about 6mos. He said that she definitely was a candidated for in home hospice care. We started that and at that point she still could feed herself, bathe herself, and go out with us using a cane. She did have trouble sleeping nights. At the end of Aug she suffered a minor fall at our home but she remained with us and hospice people seeing her and guiding me. In less that three weeks later, she suffered a really bad fall and it was apparent that I could no longer keep her safely in our home. The hospice people suggested a HIC facility. This is a facility which is in a home setting but can take no more than 2 patients. It is a step above assisted living but is not a skilled nursing home and you do need a diagnosis of long term chronic illness or a terminal condition. For some of you it may be worth checking into. BUT IF YOU DO BE SURE TO VISIT THE FACILITY AND CHECK IT OUT. We checked out five in one day and turned three of them down right away. One was full and the other, while they took good care of the people, they were also inclined to hike the monthly rate for every little thing they had to do extra above basic care. I also found a wide range of monthly basic fees. I did find with the help of an outsource researcher that the hospice company worked with, a wonderful place for my Mom. I know she isn’t going to get better and now has Sundowner’s Sydrome but she has tender loving care. I am having a sense of peace for the first time in 5-1/2 years. I hope this story may be of help to some of you. I pray nightly to God to thank HIm for His gifts and to ask Him to continue blessing my family and those who are now considered family because of their dedication, compassion and help.
Thank you for sharing. It might help someone else know what to ask for or about. I don’t believe we have this in our state, But, I like the idea.
My 86 year old father recently became ill. He fell 2 weeks ago yesterday but I was not informed until 2 days later. I took him to an ER where they took a CT Scan of the head, which showed a subdural hemorrhage. According to the ER doc, it is relatively small. Due to his advanced age, surgery to relieve the pressure will not be performed. There was no neurosurgeon on call at that hospital and he was transferred to another. They discharged him 2 days later.
Fast forward to the next day. My stepmom phoned me that evening and asked me to please come over and straighten out Dad’s medication. It was all helter skelter, out on the table and in a box on the table, all mixed up. I went and did that. Dad is brittle insulin dependent and records all his readings on a tabled document for his endocrinologist. He didn’t seem to know what he was doing and couldn’t write them in, just sat there holding the pen.
Sometime during the night, he got out of bed and fell again. This time he landed in the ER of hospital from which he was discharged just the day before. He went there complete with a laceration to the back of his head and a neck brace. He spent 2 days in ICU and is now in a private room. It is my understanding that he’ll be discharged on Monday. My stepmom realized that she won’t be able to take care of him at home so he will be admitted to a skilled care facility.
Two days ago, he started sundowning. Night before last, this went on for the entire night.and all day yesterday. His symptoms are tossing his head from side to side, flailing/flinging his arms/hands, and swinging his legs over the bedrail in an attempt to get up. He tries to talk to us, but nothing much makes any sense. The dr. wrote an order for medication to calm him down, and last night he slept through the night.
A friend is at the hospital with Dad and called my stepmom to say he is doing better. By better, I mean asking for water and a Coke, and eating some of his lunch. This after he has barely drank or eaten anything in 3 days. I told her I’d have to see it to believe it.
We have been told by his doc and nurse that he is likely suffering from the early signs of dementia (delirium has also been mentioned) and that these symptoms can disappear as quickly as they appeared. Is this accurate or will it only worsen? What have been your experiences?
Sorry to have been so winded with this. Thanks for your insight/suggestions.
Kathy
My husband is in later stages of Alzheimer’s disease and I was his sole caregiver. I found that I would no longer be able to keep him home safely, Dr. told us to take him to ER, they would admit him and then they would find a nursing home to put him into and medicare would pay for it. Keep in mind he was able to walk, etc. After he passed medical tests, they were going to admit him into psychiatric wing and told me he would be fine and to go on and leave. At this time he was becoming combative because he was confused and scared. I have no idea what took place between then and that night as he was unable to walk or hold his head up. He just sits there despondent looking down and I tried to lift his head and it won’t lift. His eyes are glazed over. He went downhill 100%! What on earth has caused this?
Beverly, I am so sad this happened but not unusual. They took charge and put him on such strong meds, he can not move. Sounds like the put him on seizure meds, or strong physcotic (sp) drugs he can’t move. They did that so they don’t have to deal with him. He might have done better on less meds, doctors often over medicate. If he is in the phsyc ward, he should have a medical power of attorney, if that is you, you will also need a daughter or son you can trust or a friend, to help understand what they are doing. There should be a 30 plan in place and a 60 day plan in place, the hospitals do this on the treatment teams which family should be a part of, ASK .. BE VOCAL… say.. I would like a copy of the treatment plans please, a list of meds, (one doc got to my aunt and if we had not had medical power of attorney he was planning shock treatment on her, we stopped it ) the Physc ward is not where he belongs, he belongs on a geriatric unit, with a geriatric specialist, not a physc specialist.. ASK he be moved. Ask what drugs he is on and why, if they gave him two new drugs at the same time ask why… get the drug warning sheets, if there is a seizure med with a pyhsycotic drug, ask that one be removed, how can you tell if one works alone with out the other , the other might not be needs. Or ask that the amounts be cut in half. The physc ward, thinks of only one way of control. please get a geriatric specialist to help. Ask the hospital to assign a family patient assistance coordinator. Call or go by his doctors office and tell him what has happened so he knows what will happen if he tells anyone else to do this. Keep in touch.. every thing we suggest is only from our life experiences. I hope something helps.
LYNDA
My mother in law is having the same falling problems, no one can explain because they don’t know… Like others here at sundowners , falling is part of the problem, they loose ability to keep balance. 3 weeks ago, my mother in law could eat and drink without assistance, walk with a walker, tell you if she needed to potty, and walk with you to the potty. she could walk to the car and get in and out.. 2 weeks ago, she could walk with a walker, get in and out of the car with assistance, but would forget she was in a chair and mess in her pull ups, she started throwing up because she was not chewing her food, then she would forget to finish eating if you didnt tell her to eat each bite. 7 days ago, she could stand with the walker, sit in the wheel chair, stand at the car so you could help her get in the car to go to day care, she would eat 1/2 of her food, and began sleeping alot, the day care said she was more combative and needed her meds. on an emergency visit with neurologist, whom she has seen since diagnosis of alzheimers ( which often comes with seizures) he siad she was getting worse and it would come fast now.. she struck him 3 times in the office.. he is the sweetest man alive, and she wanted to take him out… then out side his office, she could not stand with walker to get back in car.. 2 days ago.. we got her up to go to day care, she could no longer control her legs, her brain, would not tell her legs to stand, and she can no longer follow directions of any kind, today… she is bed ridden, and has to be hand fed… helping your parents cross over will be the hardest thing you ever do.. at first there is shock that no one can fix her, then how to handle it without the frustration and anger stressing you out, it is what it is.. no one’s fault, how to help your love one to cross over.. treat them with respect, even if they are not giving it to you (they are sick , you are not) , keep them clean, give them what they want and don’t force anything you dont have to . dignity sometimes means dying without arguements.. the day care said she is always on her feet following someone.. my mother in law fell 3 times in one weekend, one time we were within 4 feet and she had a walker, but her balance was off, and we could not move fast enough, then she fell twice at the day care, they were scared we would be mad, NO, we understood it is part of end stages, it takes balance away from them. there is nothing we can do, love her, even if she doesnt know me, keep her the way i would want someone to keep me.. Let go and let her cross over, with love. we know we have done the best we can and are still doing, so when she gets to heaven and looks back and all things are clear, she will know we did our best.. and she was loved.. that is all you can do, keep them comfortable and give them respect, and know when to hand off if they require a team to take care of them. we are looking for respite in a nursing home, but hospice is coming in this week, and may help. Whatever you do for her, she will know you did with love. Medicine to help them calm is wonderful, sometimes different meds have to be tried. Don’t stress over side effects, they are preparing for cross over, what ever keeps them comfortable out of mental and physical pain. I know this is a hard time, and we will keep you in our thoughts and prayers.
Thank you for the kind words of encouragement for everyone to be loved & give love. I find it sad when people want to throw away an elderly person & call them a burden. People & family are priceless, just because they have lived their lives. We should punish them? We do not punish infants because they do not know, it is our job to teach them, as is our job to re-teach our elders.
My father recently received 4 units of red blood cells, and had a colonoscopy at the same time. Because of his heart condition, they put him in a “twilight state” for the procedure. Ever since then, he has been walking the house at night, completely confused. Of course, the doctors are relating it to sundowners, but he never did this until after his procedure. Could the anesthesia have caused this? He also has prostrate cancer and is being treated with hormone therapy, and is very emotional. Is it possible that his hormones are out of whack? this came on so suddenly!
Yes, anesthesia can do this. It did it to my mother a few years ago and she did not get her head straightened out until she got home in her familiar surroundings. Now she has sundowners and is up alot all night long. We are trying the S.A.D. bright light and it helps some. She will be going to a special clinic is 2 weeks for a day of evaluation by different specialists who will then make recomendations to her primary care physician.
Hi Debbie, For some reason it happens a lot after hospital stays, some think the internal clock is messed up, which the way they wake you up all night in a hospital for days or weeks on end, I can understand, but the night terrors that often come on too are just scarry with no rhyme or reason. Hormones can had a lot to one’s thinking, for better or for worse. Sadly , I have not seen a cure for sundowners, but there are meds that make it easier to deal with for him and the family. See a neurologist for referral, Sundowners comes on quick without warning sometimes. I see he is dealing with a lot. Try to make him feel respected, protected , and comfortable. That is all you can do. Let the doctors take care of as much as possible. I hope there is a caring family / not just one person dealing with this daily. If he is married, make sure the primary caregiver is cared for. Anesthesia, or no anesthesia, this often comes on after a hospital stay. Get some meds so all can get some rest. Hang in there and let us know how things are going. Lynda
So my babysitter Alice whom i have known since the day i was born, is like family to me. She is one of those older woman that seemed ageless. She played tennis every day in a competitive league, walked 5 miles daily, and took care of her dying husband and my brother and I all at the same time. She was amazing and full of life.
Unfortunately two years ago, her daughter convinced her that she was to old to live by herself and that she needed to be closer to her family. Reluctantly, she agreed to leave her home and move into a nursing home 2000 miles away in florida, a few minutes from her daughter’s home. Ever since the day she left, Alice has been depressed lonely and homesick. The nurses in the nursing home do not let her clean her house or take care of her husband by herself. She calls me every once in a while claiming that her daughter never visits, she is being forced to take medicine (10mg of gendon) and now her husband has been taken away to live in the hospital part of the home so that the nurses can take better care of him. She claims that her daughter doesn’t listen to her and refuses to buy her a ticket to visit us.
Now Alice’s daughter called me last week claiming that alice has dementia and has been diagnosed with paranoid schizophrenia. She claims that alice believes the nurses there are trying to kill her, and are moving her things around when she is not there…I do not believe her, alice is SO independent and hasn’t mentioned this to me when I talked to her last. After reading the comments on this website, it is possible that Alice is suffering from sundowners, as I always seem to talk to her after breakfast and she seems fine, yet her daughter clams she is dellusional. I don’t know what to do as I am 2000 miles away and have not personally seen Alice in two years, and I do not know who to believe anymore:( Also, i looked up the medication (gendon) that her daughter claims the psychaitrist has prescribed for her, but I couldn’t find it, so does this medicine even exist? What can I do to help?
My mother is 93 years old. she is in excellent physical health and mental as well. she had a TIA 6 years ago but recovered from that. one week ago after having dental work done she complained of confusion so, thinking she was having another TIA, took her to the hospital. they said she had a bladder infection but no TIA. she was moved to a rehab. she goes from days of being fine to days of being completely confused and made at me because I wont take her home. She is not herself. How can this happen in a week?
Teresa…My mom stayed with my sister for a month after hip surgery and when she was not in her own home she was confused. Returning her home made all the difference. Ruth
My Mother is 54 years old and suffered heart failure about15 days ago. During this she experienced “Sudden Death” in which until she recovers more from her physical ailments it will be hard to tell if she will fully recover her mental functioning. She seems to have this Sundown Syndrome at night of course and throughout the day. I believe in her case it is due to over-stimulation, and seems to be improving. She hasn’t been diagnosed with any dementia or alzheimers. I am wondering if this is something she can over come and what the family can do to support her no matter the outcome?
Dear Janice, My 84 year old mom underwent bypass heart surgery and suffered sundowner’s while in the hospital. I am here to tell you that she is doing great now. After a very brief stay in a rehab facility to build up her physical strength, she is now back living in her own home. I did not think this would be the outcome in seeing the extreme degree of confusion and delusional thinking she exhibited after bypass. It was explained to me that this syndrome is common after bypass, and in fact, many surgeons do not discuss it prior to surgery, as they fear many patients in dire need of heart surgery, might avoid it in order to avoid this common side effect. In fact, the nurse slipped and mentioned the nickname given this common effect as “pump head” Since your mother is so young and has no diagnosis indicating any dementia, and since you are seeing improvement, I suspect and hope your mother has the same rapid recovery that my 84 year old mother had. My mom is no longer driving, which is something she should have considered prior to surgery. Due to this inconvenience for her, she has made the decision to sell her home and, as she has paid for long-term care insurance for many years, move into a senior facility where she will live independently with many fine conveniences she doesn’t have at home until circumstances would change that. If that time arrives, she will be able to remain in the same home and move to assisted living care. Best of wishes to you and your mother.
My 90 year old Aunt has been diagnosed with Alzheimers. She still knows us but short term memory is shot. For some reason she has this “thing” where all of her clothes are now too tight and she started cutting them at the waist until she destroyed all her underwear and most of her nice slacks. We buy underpants 3 sizes too big that just hang on her hipbones (she’s 4’11″ and 102 lbs.), she has soft cashmere sweaters that she lived in the last few years and now they are scratchy, and she works herself into a tizz (heart racing, clammy, panicy) thinking she’s restrained in her robe, night gown or any other clothes.
What is going on with her?
Hi, Sure sounds like a drug side effect. Do you know what she takes for meds?
Hello everyone,
It breaks my heart read all of your stories. My mom is going to be 79 next week. She has many health issues and is taking a lot of medications. Just recently she began to “talk” to me at night (I’m a teenager when this happens, I’m 51 now). She’s also been “talking” to my dad who died 17 years ago. She remembers it and tells me everything that happened the night before and very convinced that I was there. I’ve taken her to her diabetes doctor, she’s had a CAT scan of the brain (normal result) and I don’t know what else to do. I’m taking her to a neurologist next week hoping he can help us. How is Sundowner’s diagnosed? Can this just start out of nowhere? I’m at a loss…thanks for you help!
I am 33 years old and suffered a TBI in July due to choking. I have severe short term memory loss. I have written it down many, many times that I am clearer in the morning and get bogged down in the evening. The best way I can describe it is like a computer. The longer it is on and the more you surf the web the slower it gets. The temporary cache gets filled and this slows down your computer. Sleep for me is like dumping the temporary cache in your computer. I wake up fresh new and sadly empty at the same time. As I go through my day things become familiar and I can function faster and better, but I peak and the day slows down again.
My mom is 82 years old and 7 years ago she went into cardiac arrest and was without enough oxygen for up to 15 min. She survived but the memory loss from anoxia has been steadily getting worse. Then in June of this year her hip fractured and now she has almost total short term memory loss. She also has a lot of confusion at night and can’t sleep very well. She gets up often to go to the bathroom and will ask me when we are going to go home. This farm has been in our family for 100 years and mom lived here when she was young. She has lived here for 30 years now and it is very difficult to know that she has no idea where she is at night. I have noticed that this is much worse now that the sun goes down so early. She will come to my bedroom and stand at the door until I wake up and she will ask me where her boys are. Her boys are in their 50′s and have been gone from home for many years. Her doctor told me to give her a couple of tylenol pm to help her sleep and sometimes they work and sometimes they don’t. I’m taking her to the dr. in a few days to find out about her blood tests for her kidneys. She has congestive heart failure along with everything else and that could be why her kidneys aren’t functioning well or she might have a UTI. We will see what her dr. says. I am trying very hard to care for her and also go to college. I do this by myself as my brothers aren’t able or willing to help me. They have their own lives to live and I do understand that. Sometimes though, I do feel completely alone.
Hi Judy. After reading all the tragic stories on here yours rings identical in some ways to my father in law. He is 84 with Parkinsons and Congestive heart problems with Angina.
He has now been in hospital for near 3 weeks and the staff told us of Sundowners, hence found this site. Sadly he is totally on another planet now and constantly strives to be pulled up in bed and constantly grasps anything, bedrails, sheets, yourself if you close. He removes all his nightclothes and writhes naked on the bed. His language is now colourful and he says some very hurtful things. He looks as if hs is lapsing in and out of conciousness and carries out many of his actions with eyes shut. He was discharged and was home for 2 hours before we called 999. He has progressively deteriorated over the last 4 days and he always starts getting more agitated around 5pm and that is it till he sleeps. We left hospital 1.15am the other morning.
So sorry to ramble but this is a really painful thing to witness by my wife and myself, let alone his wife. It is a dreadul condition with no answer sadly. My heart goes out to all who have need to leave a story on this forum.
My Mom is 84, and up until 6 months ago lived alone and did her own cooking and laundry. She had a fall and we found out she had a bad UT infection. But since that first fall she has went rapidly downhill, both physically (cannot walk unassisted any longer) and mentally. She has been diagnosed with dementia and sundowners, but has no other medical issues and takes no medications. Recently she has become more lifeless and is almost always sleepy. She lives in a memory care assisted living now, as she fell 4 times because she forgot she couldnt get up and use the bathroom by herself anymore..It just seems the doctors all tell us the same thing..age, dementia, etc etc..she is going through alot of pain from being in a wheelchair and not moving enough. She is almost like a ragdoll, just barely able to sit upright. It is painful to watch her suffer so we try to bring her favorite foods, etc..it is a tough road alot of us babyboomers are walking right now
I am a caregiver for my 78 yr old mom with dementia and have been for the pass 4 yrs off and on but now I have had her for the past 5 months and her guardian. I need some help I cant do this anymore she has sundowners goes to adult day, she doesnt take her meds so I crush them and give to her, I am at whits end I have gained weight smoke more than ever have no life no friends and my own family wont help. I feel I need to let go and place her but she only has medicare and medicade wavier I cant find nothing all this has affected my health and my dr tells me stop let go U me will not live mom will. At times I just want to help mom and cant see her in a home nursing homes say no assisted say no mom needs dementia unit, mom is high functioning but the dementia is bad she argues with me wont take bath wash I have to do everything I work but now thats limited and my income is suffering. I need advice please help me
I read the stories of people with sundowners.It breaks my heart to read all of the ordeals you all go through with your love ones.We are going through the same thing with our mother she’s 81 years old.She has not been diagnoised with it yet but shows all the signs between 12 a.m. and 4 a.m.Her hospice nurse told me about it this morning I never even heard of it.I pray for my mom not to have this cause it sounds like no fun for the person and caregivers.There only me and my two siblings and our sister-in-law and our niece that are caregivers for her.I’ll keep all caregivers and people out there who dealing with this diease in my prayers
I would suggest that you begin by calling the Alzheimer’s Association at 1-800-272-3900 and tell them that you need support. They are a wealth of information. Also, you said that she has a Medicaid Waiver. Does she also have Medicaid for her medical coverage? There are some Memory Care facilities that accept Medicaid. There are also caregiver support groups. Others that have been through this will be able to give you ideas. You cannot let your own health suffer trying to take care of your mom. From what you’ve described, she is past the point of being cared for at home. Memory Care facilities can be wonderful places. Take care and good luck.
My dad just turned 80 yrs old dec 9. He has a list of medical problems one is what they call sundowners. At night he get confused disoriented. He wanted to use the bath room and refused to said the floor was flooded. Their was not a drop of water on there floor. One night he was petting his dog his dog was at home he was in the hospital. A number of times he got very violet to the point of hitting me that was the first time in my life he ever laid a hand on me. He was seeing people with rifles outside his window trying to kill him he was on the 4th floor.
My father in law just turned 88 and has been experiencing sundowners for about a week. He has transgressed very rapidly over the few days. He has trouble walking as he has diabetes and a balance problem. This accompanied with sundowners is a difficult problem to handle especially at night.
He was a very brilliant man and taught Calculus and Trig in college. He also taught one of our Presidents.
I can tell he tries very hard to remember things but they don’t come to him very quickly. He sometimes can’t remember his Grandsons or Grandaughters names that he is very close to. He has always been so kind and it is hard to see him like this. We are working to make his life as comfortable as possible.
I think my 88 year old mum might be showing similar symptoms, confused, emotional, odd behaviour at times, I agree this is very difficult to watch when they have been so capable. I like you do all I can to keep her happy and content.
This is my first visit to this site. Any help is appreciated. As a 4+ yr caregiver to an Alzheimer and COPD patient (who also has major dental issues); the sundown problems came to the surface at dinner on Christmas. Major concern from all family – the 30 min. ride home was not good. Thank goodness that the calming effect of meds helped after we got home. I have seen this coming on for some time and the meds will have to get stronger. I Wish everyone a better new year even though it will not be easy.
Not really sure…… My dad of 70 yrs had a quadruple bypass a yr and a half ago. My brother and I found him a rehab facility to go to afterwards ( one that wasn`t such a nursing home setting ), but the first night he was calling my other brother and telling him they were selling drugs in there and just all kinds of stuff. So that brother went and got him out and took him home. My dad is back drinking again and it seems when the evening gets here, he drinks and starts saying awfull things about people, running family members down. Altho different times of the day he can`t remember somethings he did back 15yrs or 20yrs ago, even further back. I live out of state and brother is trying to help with daddy, but I dont think he really knows what to do, look for, he is just taking it day by day. I s going to go to a doc appt with him soon. So what questions does he ask the doctor? How do we stop the drinking?? We dont know if it is something else or the drinking or both. My dad is really just a mess right now!! Confused! Someone told me he might have sundowner is why I came here. Thank you for any advice you can give.
Tammy you should not allow your Dad to drink while hes taking meds. Maybe delute his drinks because he wont know the difference. You brother should take him to see a neurologists and have him checked out,tell your brother to give the doctor as much info about his condition as he cabin and also what medication hes taking…
Many of the stories here. Seem the same even though they sound different. My 84 yr old Dad has sundowners and it is vertigo frustrating when trying. To deal with him at night. The neurologist today prescribed. Him olanzapine to help him sleep, I will check in laterand let you know.how.it works…
My mom started suffering from anxiety a little over a year ago and was taking Celexa. A couple of months ago she stopped taking it. A month ago she started having anxiety again. She paces from the front of the house to the back of the house, cries, screams, pulls her hair and causes herself to have heart pain. She has congestive hear failure and had triple bypass surgery 18 years ago. She has been to the hospital 3 times in the last week and no one can seem to help her. The keep giving her meds and sending her home where she keeps falling while my dad is trying to take care of her. I live 2 hours away so it is hard for me to stay there with them especially since I have a school aged child. I took her to a hospital that had a psychiatrist on duty and their preevaluation group stated she was not a candidate because she isn’t suicidal, she has a strong family basis, and she has no prior history of any type of psychosis. She is suffering and can’t get any relief. They put her on ambien, all she did was act like she somewhere else and never did sleep. They put her on Xanax 4 times a day and it helps during the day, but when it gets dark, she is a whole different person. The gave her Seroquel and still no sleep at night. I just don’t know where to go or what to do.
Any ideas? She lives in a very small community with limited resources and the other caviat is she becomes more panic stricken while riding in a car.
I just don’t know what to do.
Stacey
Checkwhat I wrote below…
It seems to me that doctors are extremely quick to prescribe strong drugs that effect the mind. I have decided to go with natural products as much as possible. Find a good health food/natural supplement store — a reputable one and check out natural alternatives. One such product that I am trying is called NutriZac — it’s main ingredient is St. John’s Wort. The NutriZac (300 mg of St John’s Wort) said one a day, but a little research online said you can take up to 900 mg of St John’s Wort, so I increased her dose to 3 a day. Don’t take my suggestions, talk to your local Health Food Store specialist and then follow up with a little research online.
Melatonin is good for sleep. I have also been told that Valerian Root is good for Sleep and Anxiety — I have not used it yet, but have it in mind for the next time I go to the Health Food Store.
None of have the answer, but if we keep trying I believe there are options better than prescription drugs. Please know that healthy alternatives do not work as fast, but have fewer bad side effects!
Wishing you the best!
Mary
Stacy, my Dad slept through the entire night last night after he took olanzapine so you might want to try that also some quiet music while she sleeps may help too,good luck
Tom –
thanks for the information, she has been admitted to a hospital due to something unrelated to the sundowners so hopefully we can get her quiet during the evening while in the hospital so we can make her life so much better.
Thanks again for the information, though.
Stacey
My mom is diagnosed with alzheimers and lives at home with us. We have seen a slow but steady decline for the
past 6 years (she’s 82 now). Yesterday a nurse came to do an assessment of her, and told us she is having
sundowners syndrome. I never heard of this until yesterday, but all the symptoms are there. Mom was always
restless at night, but now it has gotten almost unbearable. We find her out of the room totally undressed and
standing in a pool of urine (she wears diapers). We have tried limiting her fluids at night and making sure she
goes on the “potty” before bed. She has fallen out of bed 4 times in the last 6 weeks. We have taken out the
bed frame and have her mattress and box spring on the carpet.
The nurse suggested we ask the doctor about Seroquel, but when I read the warnings I am very concerned.
I’m wondering if anyone has tried it. Also, my mom has taken to chewing on her fingers, sometimes making
them bleed. We have tried everything to keep her from doing this. When I bandage the finger, she takes
it off. We have tried mittens, and taped them around her wrist so even Houdini can’t get them off…she does.
Anyone dealing with this behavior or have suggestions? I appreciate any and all advice.
Joanna, you might want to try putting gloves on her hands to prevent them from bleeding. I’m
not sure about Seroquel my. Dad takes Olanzapine and has been feeling good so far. Ask you doctor about getting a sleeping med for her…
Seroquel sure has worked for my mom. She has been on it 3 years.
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Check this out.
Best Wishes!
My wife has been prescribed two different anti-anxiety drugs for her sundown syndrome: at night, she takes a mild alprazolam(.25mg).
She is awake a lot but does not get out of bed and does not get the ‘nervous’ reactions to nightfall. In the am, I give her one/half of the drug: clonazepam (.5mg) – I found that if I gave her a whole one, she would sleep most of the morning. Hope that these help.
Thanks for the info Ken…
Hi
I had a 69 yo male patient that was a rule out for a CVA, MRI and CT were negative. He had complaint of right arm heaviness and numbness and right neck pain. He was confimed for a CVA about 6 months earlier with no risidual deficets except thought disorganization and on his NIH scale I noted some agnosia. He woke up the second night of his stay and was out of the bed when I went in to do my assessment. He did not know who he was, where he was or what time of the day it was. He wanted to use the bathroom, he was fully ambulatory with no deficites of ambulation or uppper extremities. There was a change in his personality .He was much more animated and flirtatious with the nurses as well as using foul language. He did not know his wife’s name, where he lived. or his date of birth. I called a code stoke and he was sent to CT which was negative (no changes). I gave report to the oncoming day nurse. Later that day his was discharged home in the care of his wife. He apparently had some improvement of memory during the day but still could not recall his date of birth or the date and year. The docotor put him on Aricept and sent him home. I am at a loss. I have NEVER experienced such and had a MD send the patient home. Of course he could do his own ADL’s and was safe as far as a PT/OT consult would consider. Could alzhehimers come on so suddenly? I called his wife after the event and asked her if he had ever had such an episode which she denied. She also denied he had any hx of ETOH use or abuse. I just found this kind of crazy.
From my own experience I say answer “yes” to your question. In the early stages of alzhehimers it seems that in some cases it comes and goes. For instance my Father can have it and in the next minute not even look like anything has happened to him. I would at least suggest that he has an early start of dementia at best and it seems like he is having small bouts of alzhehimers too…
My mother in law was just admitted to the hospital ,because of what we are being told is sundowners, and has been made a ward of the state. We are being told that we can’t do anything until the hearing next week. In the mean time we are trying to learn as much as possible about this condition. She is very lucid and aware of everything around her, but at night she swears that people are living in her attic. Is it normal to change that quickly? You can sit and have a normal conversation with her and then in the next breath she will tell you about the people living in her attic.
Jake, it comes and goes quickly and other times it may last for hours. The best time to get info and communicate with them seems to be the morning but as the condition gets worse the “sane” window gets smaller and smaller. Becareful with what the State does to her and be sure she gets the proper help, my Dad was given an SRI (anti-depressant) drug that ony seemed to complicate things more. We are still trying to get him off of this drug…
So true on the anti-depress meds!
Serotonin Syndrome (from SRIs, stimulants, and some sleep aids like trazodone) can certainly mimic sundowners. We’ve been trying to wean my mom (age 75) off some of her meds to see just how much it is contributing. My mom also has hallucinations and paranoia about people coming in to rape her or poison her…..only at night or early morning.
My mom is also narcoleptic, and she has both cataplexy and hallucinations.
One thing that has REALLY helped is the CPAP machine. She fights it because with no short term memory, she’ll wake up and not know why she’s wearing it. Even three hours a night helps. So many people that are post stroke or have dementia also have sleep apnea.
Wishing you well,
Lorri
Yes, it can hit that fast. Mom’s was triggered by hip surgery. Anesthesia started it and then it continued from being in the hospital’s unfamiliar surroundings. Once she was home with Dad she greatly improved, but never fully recovered. Seroquel has helped a great deal.
Grandmother gets sundowners syndrome and her diet seems to play a big role. Days where she gets candy or anything with corn syrup all hell is going to break loose in the evening. The days she eats, for example, waffles with home-made brown sugar syrup the evenings will be fairly peaceful. I’ve been documenting this fact about corn syrup, but most other people say I’m the crazy and then hand her a candy bar. And it’s not only candy, but anything with corn syrup, such as jam or otherwise what might seem healthy food until you look at the ingredient list can have similar effects. She is 92 years old, doesn’t take any medications and good health, except for the dementia.
The sugar could be an issue let us know the complete results. My wife and I were also
Thinking that maybe the darkness outside also. contribute to the condition…
Every case is different, but with my grandmother it seems not so much with the darkness, but with her bed time. She goes to bed around 7pm and the sundowners starts about two hour before. Winter months it is dark, but summer months it is still light. Then she will get up around 9 pm for something to eat and is calm as a lamb. She is only crazy for those two hours before going to bed running. On the corn syrup days she will get mad, slam doors, and generally irritated. On the good days she is just running around but with a calmer approach to things. A common theme is searching for her cats that she had 30 years previous or making sure the doors are locked over and over. During the day she can remember who you are, but at night will confuse names and faces. Sometimes she will wake up in the middle of the night and search for her babies or a couple girls she has imagined live there, but is more confused than upset.
My mothers anger and debilitating inability to balance her checkbook is driving me mad. She fly’s into rages and chases, hits and threatens me with knives. She is 72 years old and blames me for everything wrong in her life all day every day. I recently moved home after being away on my own for 25 years. I am worried that it is Sundowners Syndrome. She has always aimed her anger at her only child to which “ruined her health and robbed her of a life”. I am the trigger, all I need do is enter a room and the war commences. I have been cataloging and recording her outbursts for the better part of a year now, and the only thing that fits is Dementia/ Sundowners Syndrome. If there are 70 different recorded dementia types recorded; how can you choose the one right for the case? She will not seek help for her condition and becomes combative at the mention. She has Dry Macular degeneration, diagnosed a few years ago and has been in an eye study from the diagnosis date. Of course it is unknown whether she is in the drug trial or the placebo group. She slips in and out of depression stating she is going to blow her brains out, and other days paces the house complaining she can’t get anything done at a maddening pace. Should I try and have a conversation with her Doctor or seek help from social services. It’s hard not to take it personally when she tells me how horrible she thinks I am or that I am stupid and worthless. She is a kind person to everyone she knows except for me. I want to walk out the door and never look back, but she is my mother and I love her.
PS: I am at my wits end and examining exit options. Can someone please advise me as to what to do?
Kevin, I am sorry we missed your post, Call senior services if there is one in the area, and let someone come in to help, so they see her behavior. Call social services, if you need to. She is a danger to herself and others. Talk with her doctor and play a couple of her rants for him. I hope you find help.
Try this for the dementia:
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
My mother has the dry macular degeneration -get some Preservision from the drug store. Be cautious with the drugs – doctors wanted to put my mother on Prozac and Schizophrenia meds – I thought that was way over the top.
This is all very difficult for everyone on this page, but this is definitely NOT YOUR FAULT – so just know that.
Wishing you the best!
My father who will be 89 suffered a brain anuerysm and had a stroke. He was in the hospital for 2 weeks and seemed to have good days and some very bad days. We were able to move him to a nursing facility and he does have sundowners, in the mornings you can have a nice conversation with him but gets worse as the day goes along. He is on Seroquel (sp?) but that has not helped much. I know that he will not be able to stay there much longer and my Mother will not be able to take care of him , I live 2 hours away and am raising my 10yr old grandso after the death of my daughter from epilepsy. My parents have Medicare Complete which Im not sure will pay for his care. We are at our wits end knowing what to do now. He does get very angry and mean at nights. He also cant stand or walk on his own now after the stroke. I talked to his nurse tonight and they had to put a catheter in him because he could not urinate. I hope someone could give me some suggestion on where I can go for some help or some advice
Have you talked to his doctor and the social worker. He sounds like he would qualify for nursing home care to me. Ruth
Viki – We had the same situation with my father. He could not return home once he landed in the hospital. My mother is 85 and her health was already run down from trying to care for him at home. The social worker and doctor at the hospital were able to set up a bed for him in the nursing home of our choice and my mother took steps to apply for Medicaid for my father. Depending on your mom and dad’s financial situation, he may be eligible for Medicaid. Your mom should discuss this with the social worker. I live 5 hrs. away and it’s difficult to get to see them, but I try to get there once a month for a visit. If this goes on much longer, we are going to try to bring them both down to us if my father can make the trip. Time will tell.
Kevin – Do you have an Office for the Aging in your area? You need help and your mother needs evaluation. The Office for the Aging will send in a qualified nurse to come in and do an evaluation. There are definite safety factors both for you and your mother that need immediate attention! Call for help – that’s what they’re there for.
Three years ago I took my mom to the ER hospital because she was walking crooked and talking off the wall. I thought maybe she had a stroke. When they finally got her in the ER, they ask her is she was in any pain. She was not. She was in a-fib and fading fast. Months earilier she kept falling. She hurt herself several times and was black and blue. She just kept saying she was a clutz. She did have some type of pnuemonia but also the a-fib. First time anyone had ever told her that. Sometimes when she wasn’t feeling well, she would babble, making no sense. Now she forgets things, and she is getting up in the night to answer doors, telephone calls, etc. She gets up to eat because she says she is hungry. She fell again this time with a knife in her hand. Called the ambulance. They said all was ok. She could not remember any of it the next morning. My mom is in her late 70′s. I feel like I am dealing with Sundowner’s/ dementia. I don’t know if the dizziness and loss of footing goes along with it? She says when she moves to turn from one side to the other she just blacks out. She insist she needs Ambien to sleep at night. She is on blood thinners also. My mom comes from a family of the most strong willed and hard working women you will ever meet. I notice she gets angry when you try to insist on anything, espcially at night time. My niece stays and lives in the basement now, but she has her own family. I am not sure what I should do. Any other doctors anyone could advise I see? Any help would be appreciated. Thanks
Connie
I have been dealing with sun-downing and dementia with my mom for just over a year. As the dementia progresses rapidly, the sun-downing becomes worse. She does not sleep for any length of time no matter what med combination has been tried in the nursing home. The nursing home cannot provide the one on one day and night care she is requiring. They have been requesting a psych evaluation which I have objected to strongly. My thought: why put her through that when it would just frighten her more.
As of today, there is no choice, as the sun-downing is getting worse, mom is striking out now and becoming extremely aggressive and nasty. This comes on late afternoon and through the night. Mom is being transferred to a geriatric dementia nuerpsych unit of the local hospital for a full evaluation. The nursing home must hold her bed for 10 days and this is covered by medicare.
Perhaps your loved one needs a geriatric dementia specialist as well.
I wish you well. This is such a nasty disease.
Donna
Connie Norton – My mother is 85 yrs. old and has a-fib. She had to have a pace-maker put in to control her heart. She would faint at times and wake up and know she was ‘out like a light’ for a while.
As far as the sun-downing, for me I have experienced this in my father and my sister. Neither one experienced this while at home. Both had to go into a nursing home for different reasons and this is when they started sun-downing. It is exasperating at times, but the nursing home handles it quite well. I stayed with my sister in the nursing home before she died, and I witnessed this at night with her. We never argued with her when she insisted on coffee and cookies at three in the morning and she thought it was the afternoon. She would argue that she should be getting breakfast, when she was receiving dinner, but we never argued. We just corrected her and got her attention off the problem that was bothering her. She was not as extreme as some that I’ve read about on this site, but she did have her moments. My sister died of a brain tumor. My dad is still alive and has parkinsons. I would say that confusion is the root cause of them acting out. Some are more belligerent than others. It’s scary at first, but for me and my experience, it subsides after a while and there are drugs that usually take care of the problem. They just have to try different meds until they find the right combination.
My husband is 58 and becomes drowsy and talks nonsense in the evenings and at the dinner table. its very upsetting for the kids, aged 9 and 7. Its lonely for me because I have no-one to talk to in the evenings, and I am only 43. He has suffered depresson in the past, he has a very stressful job, he’s overweight and drinks too much (around 1.5 bottles of wine every day). On top of this he denies it when I tell him he is being incoherent. I get angry with him and we have been fighting lately. I want him to get help and I am worried as he is the breadwinner in our home.
My dear, you are in a bad situation, arguing with him will not help.. You need to quitely start making plans , something is wrong, You need to speak with his doctor, but when you do this, things can get worse. Are there guns in your house, for some reason I want to ask, just make sure they are removed from your home. Give them to someone you trust. Drinking and mental illness don’t mix. Don’t argue if you dont have to .. I have to run out.. I will be back in a while, I have you on my mind. Together , maybe we all can come up with a plan for your safety and his health. God bless you.. Lynda
Incoherent people do not know they are not making sense and nothing you say is going to change it, You need to speak with his doctor. Stop arguing with him, try to find an outside person, like your doctor to listen. If you can quitely record him, like use a pocket recorder, then you can share with his doctor. It may be something medical like a tumor, it may be early alzheimers, It might be some form of mental illness, but it is something. Be careful how you approach this. Start working to pay off any bills you have. If it is something that you can not get diagnosised now, take this time to plan. Don’t confront him, talk with your doctor about what to do. You need someone locally. His doctor, does he have a brother or a man friend who might notice the problem, you could invite over. If you go to find help remember that once this process starts he will go through an angry stage, till they find out what is wrong. Please keep in touch. Do you have a family attorney you can talk to , that will not tell him what you are doing. be safe.
Lynda
Your husbands drinking will effect any medication that he might be put on, so it’s important for you to wean him off this slowly. Be careful that his depression is not confused with Alzheimer’s and visa versa…
My dad is 89 going on 90 in March. He has had Alzheimer’s for at least 4 years. In December of 2009 he was little more than a vegetable asleep on the sofa. That Christmas I read the research on caffeine treatment for Alzheimer’s and started him on it that morning. By evening he was up off the sofa and joining the party. We estimate he improved by a year and a half but what’s even better is that he has not gotten any worse in all that time. We also tried the niacinamide cure and got further good results with that but unfortunately had to stop it when it caused him to itch. Now we’re starting him on coconut oil expecting even better results with that. Conventional medications did him no good at all so I’m glad we found somethings that do work. I’m interested in Sundowner’s as I think it may be a key to figuring out the cause of the larger disease. We do notice that dad dramatically improves for several hours after being out in the mid-day sun.
jskrepak@mail.com
Wow, wow. I am sitting here reading all these terrible stories about the elderly. I found this site after reading that Gordie Howe, an old Red Wings great, is suffering mildly from dementia and Sundowners. My friend’s mother has very bad dementia and Sundowners and my friend is about at the end of her rope, yet cannot bring herself to institutionalize her. I am 73 and quite honestly am scared reading about all the bad stuff that could come my way in the future. I come from a very long lived line of people and not one has suffered from dementia that we know of. Thank God for that but no guarantee, eh? I feel for all the people struggling with these end of life issues and wish each one God Speed.
My husband is 64 ,a viet nam vet with exposure to agent orange, diabetic, high bp, and cholestrol,has head trama,andover the last few years, ended up at the ER because of confusion, falling out of bed, unable to get up off the floor without help,has a shuffled or unsteady gait, unusually sleepy, little tono memory of events most of the time and yet there is no dianosis related to his” spells” Its always a different answer. What should I do ??
Barb, That really stinks. There is a guy in my church who was also a viet nam vet and was exposed to agent orange. He has diabetes and trouble with his hands. I just did a search and there are alot of forums on line about agent orange and viet nam. I think you will find support and some answers there. Ruth
Seek specialist, Neurology, he is so young, also, look into endocronologist (spelling) if his gait is that far off, he may have a thyroid issue., unusually sleepy… sends to too neurology. I hope this helps, if you are in a small city, go to a big city, training hospital for your specialist. Hang in there, I know you have your hands full, take time out. Get help to come in when you can. God Bless.
Lynda is right, Barb you should seek help to find out why your husband acts this way. If he is currently taking medication this may make him sleepy or he may have the beginning of Alzheimer’s. It can happen at even a young age like 55 or 64. Falling out of the bed is a sign of Alzheimer’s and it is why making Nursing Homes place alarm pads around the bed of someone effected by this…
WOW……41 year old woman recently took over care for my 95 year old Aunt who was sadly stripped of her life savings and taken advantage of from a niece who was living off her SS checks with her husband.
It’s in legal hands so hopefully she will get her savings back.(Pray)
I moved in with my children and gave her the love and care she needed and deserved for 8 months now.
She is healthy as a horse,great blood pressure,great appetite BUT………..boy oh boy……crying all the time which i related to what her niece did to her but as i grew to her and her habit’s i know it’s the start of dementia and possibly sundowners reading all these heartbreaking stories.
We had our first real panic,crying ,trembling,shaking afraid to be alone fit tonight.She is up ALL night sleepless,moving furniture,back and forth to the the bathroom all night.
They had her on Zoloft but i think she was having horrible side effects from it.(i weened her off)
I am taking her to the Drs. in a couple weeks to try and get her something to sleep…..honestly….all the medications everyone has mentioned scares me to death!
This is more than i ever imagined taking on…I gave up my freedom to live with and care for her.
Should i be prepared for this to get worse???? Does it progress differently for everyone??? It’s very stress full because she’s never been as safe as she is now…..but she seem’s in constant panic mode.
anyone in a very close situation to mine has any advise about meds and something that has been effective for your loved one….i would appreciate any advice….We are at the beginning stages of all this i believe…
Thankyou
I’m so glad i came here…lot’s of good information
Personally I avoid prescription drugs after my mother’s doctor and personal friend put her on prozac and schizophrenia meds – I was shocked and stopped the prozac after 4 days, declined the other. Try melatonin from your local healthfood store for sleep and check out this website.
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Although the effects may differ abit for each person the basic disease is still the same for everyone as it progresses. And like some other people here I took Dad off of Zoloft and I’ve found that sleeping pills do help out some but always check with your doctor first. AlsoI would try to keep her up as late as possible this may help her sleep better but there are never real solutions, some days are better than others…
Has anyone heard or used Lecithin for the treatment of dementia?
First let me suggest coconut oil. Check out this websiite:
http://www.cbn.com/media/player/index.aspx?s=/mp4/LJO190v1_WS
Many studies have been administered to test lecithin’s effect on Alzheimer’s disease. Lecithin produces the neurotransmitter acetylcholine which enables communication and signal-transmission between brain cells. Alzheimer’s disease can be caused by a change in production of acetylcholine. Many speculate that an increase in lecithin will prompt brain cells to produce more acetylcholine, thus improving memory. Lecithin and choline have been tested to do this and neither has been proven to be affective. In most of these studies, a portion of subjects improved markedly, while others were not helped at all. (Zeisel, 334)Â
Lecithin “may lower cholesterol since lecithin is composed of polyunsaturated fatty acids, but studies have been inconclusive”. (Thrive Online) “Although it is clear that lecithin administration can be beneficial for humans with tardive dyskinesia (a neurological disorder), and although there is reason to believe that normal memory can be influenced by the choline (found in lecithin) content of the diet, evidence available at this time does not justify the widespread us of lecithin for improved memory by the healthy general public” (Zeisel, 323). The only proven benefit and suggested use of lecithin or choline supplements is for those whom are taking niacin or nicotinic acid to treat high cholesterol. The niacin treatment can deplete choline, so an increased amount of lecithin or choline is necessary in the diet.
I’m not finding anything great on lecithin, but that coconut oil is worth trying, in my opinion – I’m starting it on my mother.
Best Wishes!
Vicki, here’s some info that may help you out;
http://www.doctoryourself.com/alzheimer.html
Good luck and God Bless…
And good news, recent research has finally shown how the Alzheimer’s Disease spreads inside of the brain. This finding may help scientist discover a way to break it down and prevent it from spreading;
http://www.helpingyoucare.com/17870/alzheimers-spreads-in-the-brain-like-a-virus-new-study-finds
It is 2/8/12 – Mom had partial knee surgery on 12/6/11 – has never been the same – has to be restrained – falls, now Doc says it is sundowners…… around 3-4 pm everyday she starts taking the blankets off her bed, her socks, sees things, etc… will she ever come home to her house again? What meds do we need? She knows all of us, talks about her parents (deceased) – wants to go see them – I am at a loss…
Leigh each person with Alzheimers is treated differently for instance my father is on Nemenda and Galantamine but that is not to say this is what your Mother needs. It definately sounds like she has Alzheimer and sundowners (which is a phase of alzheimer). Find out who has the power of attorney and if no one this then get this done ASAP. This will allow you to ask questions about her treatment in the place where she is and also it will allow you to suggest certain treatments for her. In most states tying someone down is frowned upon in case there is an emergency in the building. She may be able to come to your home but then you have to ask yourself if you are able to care for her anymore. For instance my father was good enough to care for here months ago but lately it’s becoming a real struggle and he may have to be comitted soon…
I don’t really know where to start…..my mother has had emergency surgery about 6 weeks ago and has been in a rehab/nursing facility ever since. She is showing clear signs of depression and sundowners syndrome as well as hospital psychosis from what I have read and done some research on. However she is in full on denial about all three things? She is on a mild form of antidepressant called remeron? The rehab places psychiatrist recommended she be on after three evaluations and to increase her appetite as she is barely eating. My mom is only 68 yrs old and acts like she is 90? She also has menears disease (spelling?) which causes sudden attacts of vertigo and she has fallen a few times and actually broke some vertibraes last summer and had less invasive surgery then but recovered faster. Her current Dr. Says she has babied her body so much since then due to her fear of falling and depends on a walker to much that it has caused her muscles to start to deteriorate and atrophy and said she has the body of an 85 yr old women because of this. But currently my main concern is her constant confusion as the day comes to an end. When you talk to her she seems to make perfect sense but gets so confused and contradicts herself constantly. And the lies shes telling everyone from me to the Drs and nurses and even her sister who is now the one there with her helping out. I live in Texas and she’s in Florida so I was there for a week. Nevertheless I continue where to turn she’s refusing help from everyone today I had a psychologist go to her to see her and she thought she was a physical therapist etc. Long story…..can anyone give any guidance. Her personality has changed and it’s like my aunt and I have to tip toe on egg shells with everything we say and do with her and now there releasing her on mon the 13th because physically she’s fine? Psychologically not at all! Any insight or advice anyone has would be greatly appreciated!
Hi! As I am reading this I am really curious to know exactly what my 82 yr old mom really has, she has suffered from two strokes in the past 4 yrs, before that she was in perfect health, she took no daily meds and tylenol worked for minor aches and pains. since her first stroke she has been put on 12 different medications and it seems like the drs are prescribing more daily. This past summer she suffered another stroke which was caused from some idiot dr who prescribed her 1000mg of muscle relaxer and an extremly high dose of vicodin after being admitted for overdosing on meds she suffered a stroke (a bleed not a clot) anywho, while she was in the hospital on the sixth floor she would call me first thing in the morning to tell me that she was being held against her will and that the people there were trying to kill her, she refused to take meds the nurses would give her, she would spit them on the floor when they would leave, at one point she wrote notes ( she believed the nurse told her that they came to my house and took my phone away so she could not call me) and tried to figure a way to break the window and throw them out, in the hospital it seemed to be an all day occurance, she knew everyone in her family and her normal adl’s but she truly believed she was being held captive, she went as far as to tell me she had been discharged and for me to come pick her up, once i got there she is ready with papers and her coat. I figured she had been discharged until half way to her house that I had gotten a call from the charge nurse wondering where she was!!!!! Things seemed to get better once she was back home and it has been sometime now but the other day I took her for lunch and she told me of her “visitors” at night that wake her up, she tells me that she wakes up to go potty and there are four people who she does not know sitting at her dining room table, she thinks they are there to visit but just not with her, she wonders how they get in the house and gets aggitated when they will not answer her. She believes they are playing tricks on her, the other night she told me the girl that was there stole her teeth and hid them under her pillow, other times she gets aggitated and yells at them to stop stealing her furniture. After she told me this I told her that I believe she has sundowners, since i told her this her visitors have not been back, but she did tell me today that there are times during the day that she thinks my brother and me are playing on the floor, she thinks that we are little again, the weird part (ok weirder part) is my brother is 14 yrs older so we never played as little kids and we are now 38 and 52 so….I am concerned and confused, is there anyone out there that knows what this is, I am thinking she is on way to many prescription drugs!!!! or is she seeing ghost!!! Help please!!!!!
It sounds like she may be starting dementia and sundowners but I would suggest taking her to a neurologist for a diagnose before getting her put on any more meds. Being “combative” sounds like alzheimers but the doctor would be able to tell you this for certain. Her regular doctor should be able to get you a referal for the neurologist and be sure to go with her and ask any questions you have about her condition and her meds…
My mother was diagnosed a year and a half ago with full blown dementia. She had brain surgery for too hypotonia’s . Which she was falling and not letting us know. I as her daughter brought her ome with in- home care knowing I could care for her, she’s my mom… Well 21/2 to 3 weeks went by and she became mean,accusing me of awful things. She wasn’t sleeping she was up all night. Moving things hiding things. I called the doctor they gave her sleep aid and I can’t remember the other prescription . But it seemed to work for about 2 days. Than for 7 whole days I stayed awake for fear of her hurting me. I called on the 7th day The CSB I Believe that’s th service , but the was nothining they could do she hadn’t touched nor threatened me, but I don’t know why I knew she was going to hurt me. Around 11:30 that evening she did. I call 911 the hardest hing I’ve EVER done. Or had to do in my life. Have a sister & brother, they haven’t even contacted me for nothing . I have had o go through this totally by my self. To make matters worst I was in an car accident in aug 2010 rear ended, still today I’m going through that was Disabled on Aug 26 2011. My Mother has been in 2 Assisited Living Facilities , just when things were coming together she took a fall Jan 8 2012, another hematoma and a fractured eye. Now they made the decision of her having to go to a Nursing Home with Hospice Care. From the accident my legs will just give out occasionally ,this time I took a hard hit to my left knee and back which I already had servers problems. Mom now is going through the up all night deals and going none stop they upped her meds and she still goes like the Energizer Bunny, she’ll be 87 this year & I’m all alone and their talking about 24/7 care. I can’t afford that my husbands income is all we have. Does anyone know of some kind of help to help me watch her more. I’m so confused, heart hurting for my Mom, I’ve lost her once now I know I’ll lose her again but til that moment comes I want her to have as much quality of life possible. My friends do occasionally help, god has helped me there but not as much as she is requiring…. I’m from Hampton, VA. If anyone has any ideas or knows any kind of help, I’m greatly in need as I’m sureI’m not alone would be Help. GOD BLESS ALL OF US…. Carolyn , HAMPTON, VA
My mother now almost 89 was very lucid 2 years ago. She had total hip replacement and the anesthesia made her very confused, hallucinating and not recognizing us. She thought she was at the doctors and far away places she had lived at. She had two more surgeries and the last one in August made her not only confused but with sun-downers. She is now almost having no lucid moments. She screams and calls for her mother, father, siblings ( who are gone) and for my sister and myself. She lives with both of us, we take turns. She came today to my house. She took a pill to sleep but calls and screams as if in pain. During the day she sits quietly and talks nicely. My sister was ready to explode caring for her. i am going to school, teach a class and have to take an exam and write a thesis in the next few weeks and months. She is taking Haloperidol 3 X a day and 2 unison at night. Tonight she could only swallow one. I am not sure if there is something I can do at night, should I ignore her calling everyone or screaming , I\my sister said she will not get out of bed. She has rails. She is on a walker and walks a little wobbly. I need to get some sleep so I can do my work, but i am afraid to ignore her, my sister said in the morning she is better. it has been inspiring to read and know that so many of you are in the same boat. I remember my Mom staying up nights with us children many nights with an ear ache, sore throat, mumps, all the childhood diseases and I am happy to care for her as she holds my hands in gratitude and sometimes shows a smile. I tell her “where is my smile” and she forces a smile and makes her feel a little better. Good luck to all! There is someone up there greater than us all, I feel that there is great strength to draw from someone I believe has gone through all of our pains and it gives comfort to know that.
Ceci, asa your mother’s caregiver you need to get some sleep too. Something that you might consider is to keep her up as late as possible before bedtime. Playing some soft music seems to help also, my Dad’s listens to orchestrated music (Big Bands are too loud for him). Some other suggestions for yourself (and everyone else here) is to get a strong railing in place, this will keep them in bed and prevent any midnight walks, also if there is an issue with stripping the clothes off be aware that there are places where you can buy clothes that zip up in the back, this prevents them from taking them off at night. Try to prevent them from taking daytime naps because this will only allow them to stay up more at night. As far as the anxiety goes we have had some success with Xanax (.25 dose) and use this right before bedtime. Hope some of this info helps folks here and take care…
It is nice to hear that we arent the only family going thru this but I wouldnt wish this pain on ANYONE!
wow this is my papa to the T and not one dr or nurse has said one thing ever about this. my family thinks im lying about his symptoms because they never see him in the evening and assume im trying to have him “put away” when now i know this is a real disease involved with his parkinsons and dimensia! thank you!
Yep… its real… My dad is fine during the day… sleeps a lot, but when he is awake, he knows pretty much where he is… as soon as darkness hits.. he is WIDE awake and is completely confused as to what town he is in. My daughter works in an assisted living place, and after two days here, that was her first comment…. He has Sundowners. We are going to the DR on thursday to talk to him about this and what we can do about the Anxiety that is involved with this… I don’t think your lying at all. I took care of my Grandfather who had Alzheimers and it was the same thing… A lot of wandering at night and day time sleeping. Unless people spend at the least two or three days… all day and night… they have no idea.
Take care with prescription drugs – do your research – consider having a conversation with your local health food store – find someone who knows the benefits of alternative herbs.
Xanax worked well for my dad’s Anxiety Ebby, maybe you can try that. Be sure that he has a bedrail to prevent any falls that might hurt him…
I care for my mother; she has Alzheimers, and a history of heart disease (two quadruple bypasses).
My sister purchased a machine that that plays nature sounds (nighttime, forest,etc.). The ocean waves works so well for Mom; soft, repetitive. The bonus is, one less pill, with whatever side effects. It has totally replaced her sleeping pill, which caused her to stumble on her nighttime bathroom breaks, and be logy in the morning.
I hope this works for others. Our older loved ones need sleep, and so do we!
I was doing a little research as I am writing about the events of last year, primarily as a catharsis as I move through the grief process. What is written here about Sundowner’s describes exactly what I went through with my mother. She died from cancer last February but in the five and a half years from the diagnosis of cancer until she died last year, I was with her as her primary caregiver and she exhibited numerous symptoms of depression, dementia, and sundowner’s. While she exhibited confusion at other times of the day, it was most pronounced after sunset and especially if she was not at home. I could cite instance upon instance and since I was with her 24/7 and she was able to “cover” well (except after dark) in the presence of other people, others frequently didn’t believe me. This even includes health professionals. My heart goes out to anyone who is living/has lived with what I lived with for those 5 1/2 years. Thankfully, I also found a support group for caregivers of Alzheimer’s and other dementia patients. These support groups are invaluable if you can find them.
Jo,
I am grieving terribly as I just lost my mom to complications from cancer treatment. She was diagnosed seven years ago, and had a recurrence in August of this past year. After completing chemo and radiation, two weeks later she began staying awake all night. She would moan and yell sometimes. It happened out of the blue. I did not have any idea what was going on. Is this part of the process before a patient passes away? I am still not sure what happened…it was all so fast.
Thanks,
Patti
My elderly mother has dementia & is in a rehab center much like a nursing home except for the therapy. She cannot seem to wake up today. She even falls asleep while eating & must be roused. She was this way in the hospital for 3 days last week. The last couple of days, before she slept all the time, she became agitated & restless in the late afternoon, insisting on leaving the room. This was highly unusual for her. Could this be Sunddowners Syndrome? A friend said her mother-in-law was diagnosed with this and slept almost continually also.
Make sure she is drinking lots of water – ask her dr. how much she needs and have staff measure her intake daily. My mother’s symptoms are doubled when she is dehydrated – and it has put her in the hospital, where at least she is on an IV and they do a blood test to check her levels. Elderly lose their sense of thirst and it is a reasonably easy fix if you can get her to drink. Dehydration presents both with dementia and lethargy.
It seems only logical that it must correlate with one’s circadian rhythms. Which occur in the evening. Maybe narrowing of air passages or some other circadian occurrence.
Keep them up during the daytime as much as possible and be sure that any meds given are not contributing to the daytime sleep…
My mother recently went into the hospital for the flu but developed pneumonia. It got pretty aggresive within 24 hours so the doctors used medication to keep her under and try to drain her lungs. She was under for 4 days. She has the same symptoms and the doctors called it Sundowners.The doctor said it was temporary but gave no time table and one of the RN’s said it was not reversible. Have you heard if this is true?
I think you will find that your mom will improve when she gets out of the hospital. However, I think you should expect more episodes in the future. It’s difficult, but relatively common. Be planning for some type of caregivers in the future — family, church family or friends are best, but there are services. Beware because some are not trustworthy and the elderly are as vulnerable as children.
i am on thyroid med and it took years to get it adjusted…the thyroid controls almost everything in the body…andi have had to study nutrition for years to figure out my own problems. no one has mentioned that old people often don’t eat right…i got so tired i wanted to die…dr. checked said i was enemic. i tried iron and found i not only had energy but my memory was better..same thing with d3 which is the sunshine vit…if i go for 3 days without it i can’t remember anything. my dr. said that older people do not absorb vit and minerals as the lining of the bowel gets thin. I am now eating lots of beef and taking iron every other day…it is very constipating so i have to take magnesum . I am now in the process of learning which veg. have what vit and minerals and got me a juicer. allergies also play a large part , if they are glutun sensitive, wheat, rye, oats and corn, and eat it for supper or lunch, could that be the problem?…i have about given up on dr. and am going the nutritional way….Zink makes u dream, and u do need to do that and time seems to have little meaning to me and all my friends…over active thyroid, graves disease, can make u halucinate, been there, as i was given too much med when i first started.. also makes u paranoid, and A,d.d.. they tried all kinds of med…nothing worked, so finally i went off all and started reading about nutrition. .older people will also tell u they aren’t hungry…give them iron that will change!!! check their teeth…pain makes u crazy and will also keep food from digesting properly. if they have badder infections give them cranberry pills.. or drink cranberry juice.,or grape..not the apple they add ascorbic acid to it..works in 2 days…in most cases. antibiotics will make an acidic condition and the body needs to be alkaline. bacteria won’t grow in an alkaline condition…search all these things on the net…i did and talked to the people at the health food store, bought books and found a dr. that believes in nutrition. hope i have been of some help..email me if u can’t get the info..i do find that too much stimulation keeps me from sleeping…i also take melitoin…body is suppose to make it at night…older people do not make it or not enough…then we stay awake until we are exausted.. NO SLEEP, NO BRAIN!!!. .par6197@ yahoo. com.
pat, thanks for the info and also don’t forget that Alzheimer’s patients often contract UTIs (urinary tract infections) which can cause alot of issues. As for folks having a thyroid condition most doctors will do a blood screen/test to check the patient before the prescribe any meds nutrition can help but since this is a degenerate disease often the conditions are worsened by this and no vitamin can cure this disease since they still don’t know exactly what causes it. Glad to see the proper eating is helping you but in the case of here most folks have a hard time eating anything because of their poor motor skills. Also Alzheimer’s patients do not sleep well at night which is why they call this “Sundowner’s Syndrome”…
Thank you so much for this wonderful, insightful information. My mother is 94 and until July of 2011 lived alone. In July she was diagnosed with Congestive Heart Failure. 4 of her 7 children were taking turns taking care of her which seemed to be working out well. In January 2012 she broke her hip and had to have partial hip replacement surgery. Surgery went well, but had a heart attack the next day. She went to Rehab/Nursing Center and there is where the problem started. She would lay in bed all day if she could and at nite would torment the staff with cries of pain,and having to use the bathroom. After a month in there she was sent back to the hospital with chest pains. No real problems were found. I have had her home with me for a week now and she still complains of stomach, hip, feet, shoulder, elbow, and head pain. The pains are much more severe at nite and legs that she could not use to hold herself up during the day are moving like she is riding a bicycle at nite. Under Dr. advice have stopped all meds and use only ones necessary to keep her calm and comfortable. She normally is a sweet person, but has threated me with physical pain. She calls out all nite for help and having to pee if I don’t give her Adivan. I know she must be dehydrated because she will only drink a little & eats very little, and because of the CHF can only have a limited amount of liquid. I thank the Lord for Hospice and their help. Adivan helps my mother sleep at nite so I can get the sleep I need to help her during the day. This has been the meanest roller coaster in my life of 56 years. I just hate to see her suffering so. I am determined to help her as long as I can. She is my mother….and I feel blessed to have had her this long.
Jeannie, is your Mom incontinent and if so then don’t worry about her threatening to wet herself and if she is not then you should get her to wear them ASAP. Be sure to give her a suppliment like ensure so she gets some fluids and vitamins also electrolite will help with dehydration. As for the pain, it could be anythng from self-inflicted at night to something from her surgery, if it continues for awhile I would have it checked out,,,
Tom, Thanks for your reply but sadly my mother passed yesterday. She died in her sleep as she wanted to. I thank the Lord above for his mercy.
Pat, I agree with you. If only we had all started eating properly from the start. There are so many chemicals added to our foods and sprayed on our produce that we are seeing more and more illnesses in later life. My parents did well into thier 90′s before dementia began showing up. They had an organic garden and ate very well until they could no longer do the work. Women especially have thryoid problems and it is being linked to xray exposure with mamograms. I ask for a thyroid collar when I have xrays to cover my throid from exposure. Our processed foods are removing the good vitamins and minerals that our bodies need to function well. Of course other factors are invilved, but I feel this is the biggie. My 2 cents. Ruth RN
Ruth, My wife had a thyroid problem but it wasn’t from any X-rays she had, it may have been hereditary but the Docs are still no sure. But I agree chemicals additives are not good for anyones health…
Tom…
I am in tears as I read the comments. I went through the dementia period with my dad aboiut 6 years ago. He became extremely aggressive after dark. He was in the hospital and it took 2-3 people to control him. He was also having mini-strokes, which certainly didn’t help the situation. I distinctly remember one night when the nurse thought Dad was having another mini-stroke and he was rushed to have a brain scan. He fought like crazy not to have the scan, and my sister and I could not understand a word he said. Oh, how we cried as we watched him. It was terrifying and heartbreaking to watch him. I still remember that feeling as though it happened yesterday. After a while, I insisted that the doctor put him on aricept and he told me that the advertisements for the medicine were to make people feel guilty, which,.of course, would make people buy it. Not true. My dad improved dramatically and survived until Jan. 22 of this year. In fact, his memory became better than mine. It was amazing!! It truly was Then a few months ago I noticed that my dad was becoming confused again, but only sometimes. Then he became a little worse, but he didn’t experience the sundowners syndrome, thank God. I miss my dad something fierce, but I had rather he die than go through sundowners again. Can anyone tell me if animals experience this syndrome? I have a 17-year-old Maltese who can still run, play, and eat, eat. The vet said that nothing is wrong with him except old age. He is like our child. Anyway, come nightfall, he paces, and paces, and paces. One night he paced for one hour. He becomes confused sometimes while trying to get to his water bowl. His eyesight isn’t great, but I can tell when he is truly confused. Don’t think I am comparing animals to humans, although we love Rascal as though he were human, but I just wonder if there is a chance that sundowners effects animals, also. Thanks for bearing with me through my long comments.
My Father-in-law moved in with us a month ago. He has been diagnosed with dementia. He is doing great, just short term memory loss. The thing that bothers me and concerns me is this: He wants to sit in his car for hours. He will roll the windows down, come in for a coke, cheese, or bathroom break, but go back out. He will come eat with us when I go get him, but not so much for his son. But he will just go back out until the evening news comes on. Has anyone dealt with this and is there anything I can do to help him? He welcomes us to come sit with him in the car. It makes me sad to see this withdrawal.
Maxine, no sure about the cat but I’m glad you were able to extend you Dad’s life some. My Dad takes xanax at night to calm down and most of the time it helps. But his doctor first thought he was having seizures which after a CT we found out this was not the case. When they have what I call their “moments” at night they can become violent and when the morning comes they usually don’t remember a thing. One problem my Dad has beyond the Alzheimers is he also has Parkinson’s which just complicates the issue even more…
Thank you so much for your reply. I am truly sorry about your Dad. I wish I had a magic wand and could wave it and help everyone who has to go through this with a parent. It hurts like crazy to see a parent change so drastically come nightfall. I just don’t understand why older people have to deal with more than one illness at a time. It just doesn’t seem fair that your Dad has to endure Parkinson’s as well as Alzheimers. Some people might say, “Well, that’s just life.” How comforting!! What a hatefull thing to say. These people obviously have not faced serious life situations. I cannot comprehend that one of the two people who created me is gone. He went through a rough time, but I think the sundowners was the worst for the family. Dad never remembered the things he said and did. I will keep you and your Dad in my prayers.
DD, maybe sit in the car and find out why he feels this way , sometimes they relive their past and maybe this is what he’s doing…
Good Luck and God Bless…
Here’s a few tips that may help some others;
If you have an issue with disrobing they make adaptive clothing with the zipper on the back that will help relieve this….
If you have an issue with falling out of bed, instead of renting a costly hospital bed you can buy side rails that adapt to most beds that will help with this…
Music (soft and soothing) seems to work the best at night and helps to calm down the system…
Be sure to keep an eye on infections (mainly UTI) since this is common with Alzheimer patients…
Lastly, work with your doctor/neurogolist to get the correct meds for them and also the best dosage too…
Wow-a great forum, and it is obvious this is an important topic that many are experiencing and puzzling over. I work in the eldercare field and get a lot of questions about Alzheimer’s/dementia and especially lately, Sundowner’s Syndrome. One of the things I find (and it seems there are a lot of these questions here) is that there is A LOT of confusion about terminology. This is, unfortunately, even true in the medical/eldercare professional world sometimes. We created a concise handout on dementia/memory loss related terminology to really try to help with this and I’d invite anyone to download and/or share it: http://info.agingwisely.com/memory-loss-dementia-old-age-what-is-it. Just a quickie here–Alzheimers and other dementias (there are many) are not “normal” aging (some learning/memory changes are, but not so that it affects daily living–see our “what’s normal”), but they become more common with advanced age. Sundowners describes certain behavior (as well described here) that is found in some people with different forms of dementia.
If you know someone having sundowner’s symptoms: 1. make sure you understand underlying causes (i.e. have a good diagnostic workup) 2. get experienced medical professionals/specialists–it can be a mess if you are dealing with a Dr. who is not a specialist as some of the supposed “calming” medications can be very problematic with dementia/in the elderly 3. read up on some of the good tips other caregivers and professionals can share–I think light therapy’s been mentioned here but there are also simple environmental things that can help (knowing triggers, calming things, providing activities, music etc.). I’ve been sharing a lot of these lately because there seem to be so many questions out there.
It is too much to get in to in depth here…but I saw a # of comments about hospitalization and this is an important topic. Hospital delirium is common, especially among the elderly. In addition, a hospital stay or surgery can have a # of negative effects on the elderly or someone with any form of dementia. Obviously, it can’t always be avoided…but it should be part of the decision making/care planning process when possible (i.e. is this really something that needs to be handled via hospitalization, what are the pros and cons of surgery and ongoing quality of life) and precautions should be maximized when the hospitalization has to happen (good geriatric care precautions, fall prevention, consideration of round-the-clock caregivers etc.).
Shannon, great info….Thank you for caring for our elderly. 4 yrs ago, I took my father to Hermann Hospital in downtown Houston, I believe, the best Medical Center in the World, and walk him out of there because of the nursing team there. I have found him the best group of Dr.’s on the North side of town. It is very hard to know what sets them off. You know, a smile could set my dad off. I know, not everyone has the luxury of keeping their parent around the clock, but, I know that our “safe zone” is usually not more than 15min away from us.. Hospitalization. wow, definitely weigh the pro’s and con’s. PT and Nurses come to the house, but, as for CNA’s well, long story short. My dad just didn’t want anyone that he didn’t know around him. So, that ended that short trial. Everyone is different. Sundowners Syndrome starts for him around 4pm…It is crazy. When you care for these people, you, yourself figure out all the (little things to us), such as: rugs, coffee tables, extension cords, are definitely huge problems for them. God bless you, Shannon.
Bettye.
I have FINALLY found help after a LOT of investigation. My Mom is now only on Vitamin D 2000 Ius daily in the AM. And Melatonin at night. For weeks she was keeping me awake ALL night, on meds the Dr. gave her.They made her WORSE! She would sleep ALL day and be up ALL night. Now I leave a Melatonin in the bathroom for her at night if she wakes up. ITS FINALLY helped. I also lock my bedroom door at night so shes not waking me all night. With a note on my door to take her med and let me sleep til 7 AM at the very least. She will now only take a small nap in the daytime. Then shes sleeping well at night. I hope this helps someone else. I was ready to pull my hair out before I figured this out. I also, make sure the house has a lot of light in the daytime. And she wont leave the house. If she gets up before me, she just sits in her chair til I get up. I leave her reading material, and crossword puzzles but she never reads them. She watches the cat out on the porch, and the humming birds I feed. I also got her a dog. A prue bred Rat terrior she Loves. That is going to have Chihuahua puppies. She is looking forward to picking a tiny one, she can hold all the time. Unfortunately the Rat terrior is too big, to sit on her lap. She has bonded to me. But I bred our dog to get a tiny one. Then I will fix her. (I already have more homes than the puppies she will have.) I have also gotten my Mom 2 Beta fish she LOVES watching. I hope this helps someone else. If you cannot get a dog,.maybe a kitten. Or beautiful Beta fish.
I would urge you to have an appt with a psychologist to deal with these acute anxieties about the dark
i dont know how he is at dark time but will ask nursing staff tmr ngt …thank you
hi my dad has just turned 64 last week im worried sick abt him,he has been in and out of hospital for last 4yrs,every time he goes in his confusion is getting worse he thinks he has been at work alday or at the pub the confusion has been realy bad he isn,t recognising me a cpl of times now and asking me where i am etc its so hard,they tell me he been ok today but i go at ngt to visit and he away in another world,but just recently iv been getting a nurse in at ngt to see for there selfs,so iv still not got a diagnosis as yet but i dont know how to get the help i and my dad both need even just answers pls help???? thank you for sharing your stories with me
I don’t know what i am supposed to do… my husband is only 64 but has dementia from brain cancer and radiation treatments. I am 13 years younger and I MUST work to keep us afloat. I have a cousin who checks on him most days, but I have anxiety every day because I never know what I am going to find when I get home. The confusion and aggression definitely are worse in the evening when I get home after a long day. He is pretty good in the morning, but bat crazy by dinner time. I work at a very strict employer and can only call during breaks and lunch and if he doesn’t answer the phone, I worry myself sick until I get home. I have no time off because it is a recent new job and as I said strict, I don’t know if he is safe at home, but I can’t afford home care – any ideas on what I can/should do???
Barbara check to see if your county has any medical programs that might help you in caring for your husband. Also maybe if possible you could adjust your hours but if neither works maybe something could be prescribed to help calm him down. Let us know how you make out…
@ Barb-I am sorry to hear about your tough situation–it certainly sounds like you are trying to do your best juggling a lot, but there’s a lot on your plate. I had 2 thoughts–have you checked respite care options in your area? Here’s a broad overview about respite care: http://info.agingwisely.com/blog/bid/49944/Caregivers-Options-for-Respite-Taking-a-Break. Some counties have adult day care which is at least partially funded (i.e. could get paid for or discounted). You’d need to see if it is appropriate for your husband. Perhaps even if he was able to visit a program part of the day or while you are at work, 1. you’d feel some peace of mind re safety, 2. it may keep him busy/more tired when you get home, could possibly help with evening symptoms. Second, would any of his physician’s offices/cancer providers be able to offer any case management or recommendations? Some times they can help connect you with programs to help, though many times the elder services agencies or Alzheimer’s Assoc. are more geared to these types of needs. They may also be able to help with the agitation, what might help him feel more calm.
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