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.
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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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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 día 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)
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…
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!!!!!
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