[...] the day goes on. I spoke with staff members about this and one theory may be Twilight Syndrome or Sundowner’s Syndrome, which commonly afflicts dementia [...]

Can you try putting on as many lights in the house as you need, besides lights in bedrooms of those sleeping? You may want to lay in a bedroom or on a couch with a lot of light and fall asleep that way. I know that I did that for a long time when I was having panic attacks.

I am the daughter of a sundowner. I am interested in finding out if the person with the disease is physically violent, toward themselves or others.I understand that they are not aware of the pain but do they have fits of rage? If I could get an answer or some feedback that would be appreciated.

My father is 88. he is a disabled vet from ww2. My mother took care of him..she passed away over 2 years ago. He is living in an assisted situation. I have been going to see him for 3 or 4 hours every day since she passed. He has always taken alot of meds…I noticed that one of the ones you mentioned the lisinopril is also one he takes. he takes anti seizure meds also and blood pressure and also prosac..lots of calcium and some meds to settle his stomach. Lately at night he has been taking off his clothes, basically ripping his pajama tops off and laying in bed totally naked. He says he sees Patsy cline in the closet ( he doesn’t even really know who she is) and now he seems really disoriented.( he does not have alzheimers) I am wondering about this sundowners thing. I wish i could be as kind as you in referring to the medical profession but alas, I cannot. My father has never lived alone and i know he is lonely but this thing has come about so quickly. I am about to visit quincy veterans home tomorrow , he is now on the list. I understand about the homelife…this letter is just to let you know that you are not alone. Joan

john i read your story it sounds just like my grandmother when she was in the hospital i hated to see 500 come thats when the stuff would hit the fan and like you know one seemed to worry about it. she would cry one minute and be mean the next. i even ask them to give her a low dose xanax they said no. it worried me when i had to leave because i was always afraid they would be mean to her.

My father has dementia and was not actually diagnosed with sundowners but was getting very violent at night and walking around all night. A psychiatric nurse suggested it could be the Ambien the doctor prescribed for him. We took him off it and in 3 days he was his normal sweet man. Now I don’t know if it was the combination of drugs with the ambien, as he was also on Risperidone, Hydralazine, Metoprolol and Mirtazapine (Remeron). Which we are in the process of trying to wean him off some of these with the help of the psych nurse. All these doctors just dope these people up. It’s terrible.

Deb: I have no experience with those drugs and if they work, let me know. I am going to try a different approach. I’m going to try a night light. I doubt it will help but there is evidence that people who have a lack of light such as in Alaska do have some mental problems. It worth a try. Anyone else tried this?

I was talking to a friend who is a doctor about this. He offered a few insights but was quick to admit that the medical community is in essence baffled by this condition. He did share one thought that I’d like to share with you. “The person who is most effected by Sundowner’s syndrome is the caregiver and they must be careful of their health as well.” Easier said than done but something to think about.

dose this sight have a chat room or a support group would love to join sometimes care givers need others to help

I am a 27 yr old combat vet. I have had a history of problems through out my life as well as it running in the family. Family history includes A.D.H.D., suicidal thoughts and attemps as well as a few successes, Depression, bi-polarism, manic depression just to name a few. I was in a helicopter crash on my last deployment which rounds out my head injuries over my lifetime into the teens. My wife and mother-in-law have an uncle/brother respectively who is a Vietnam vet that was diagnosed with Sundowners syndrome. I am currently on more medications for pain and inflamaition/seizures than you can shake a stick at. The army currently has me on 27 pills daily. My wife and mother-in-law have noticed many of the symptoms i have match to the tee that he has. Im afraid of being thrown out of the military as this is all I have and with my injuries I would never be able to support my wife and son if that happened. I tried going to college but with my brain injuries I cant even concentrate for more than 10 minutes and trying to retain the information is damn near impossible. I also don’t dream at night but suffer from severe flash backs and have also been diagnosed with severe P.T.S.D. from things that i was part of/witnessed over my deployments.Sleep is very far and few between to the point where my longest stint was 10 days without a single wink of sleep. Any help or information I could get would be greatly appreciated. contact me at blkhwkce69@yahoo.com or justin.j.stanton@us.army.mil or my wife who would also like to speak with someone who has any info on this subject at jennygnkb@yahoo.com

Hello Everyone. I’ve started a discussion forum on the website. Let me know on the forum if you have any questions about sign-up.

I was very interested in Carla’s comments because my husband, age 56, has been exhibiting the same sort of behavior, beginning around 10:30 P.M. every evening. He is on methadone and zanax for pain conditions, and has been under increasing stress lately as he has been having trouble with his doctors. The Sundowners behavior reminds me of what my 84 year old father exhibited when hospitalized, and I wonder if anyone else has seen this kind of thing in chronic pain patients being treated with these drugs? He becomes quite irrational, very verbally abusive, and threatens physical violence. Also disoriented and forgetful. A lot of “blaming” and name calling. Then it seems to lift around 1:00 a.m. but we are both getting terribly worn out! Any comments would be welcome.

Deb…my Mother has dementia and was put on Aricept over a year ago. We didn’t notice a huge improvement and about 6 weeks later the doctor added Namenda. She continued her decline and we were very worried. She was moved from independent living into health care after a fall. The decline and confusion worsened and the nurse suggested DROPPING the Namenda. Her improvement happened pretty quickly. She is still on Aricept and is doing very well on it now. Hope this helps–I imagine every case is different–but the nurse at the facility said she had seen that a lot–along with improvement once the Namenda was eliminated.

Terry–it can take several weeks for the aricept to begin helping and before you may see some improvement. I hope that it proves of help to you. For any of you whose Moms are suffering from Alzheimers –a dear friend of mine found that giving her mother a real baby doll–the baby type, not the toddler type, “woke” her Mother up to her mothering instincts. She kissed that baby every day and sang to it and nurtured it–now there is a program in her area to provide baby dolls to other Mothers suffering from Alzheimers. It was a joy just to see some of her Mother returning to her nurturing roots.

anyone willing to chat or to just vent please feel free to email me sometimes i feel like iam the only one going through this cathy

Sorry Meghan, i put your name instead of mine. I wasn’t sure what they wanted.

I feel that those with Sundowner Syndrome are actually
exhibiting symptoms of electrical sensitivity or (EMF
Sensitivity). As dark approaches more lights start coming
on, the electric stove is used for cooking of dinner, people
settle down to watch tv, etc. This increased use of
electricity causes EMF Sensitivity symptoms in people with
medical conditions that are making them more sensitive. The
symptoms relieve an hour after dawn as the electrical load is reduced. This may sound strange, but consider it as an option.

John my 83 yr old mother is on Coreg as well and has suffered sundowners lat august while in the hospital for the first time, we were mortified and it seem some nurses and staff weren’t even aware of this disorder, once i got her home he was fine, then we changed the furniture around in January and we had a stint of a 27 hr straight episode, i was so exhausted, imaginary children peole hanging from the trees, but when she awakened the next morning to her it was all a dream, she was placed in the hospital with congestive hert failure and once again it showed its ugly face, she is now home an has not had any delusional visions, but still does not recognize home, i was wondering if the coreg had anything to do with it…. best of luck everyone….

Terry:
I have long suspected that Coreg played a role in my mother’s
sudden dementia The effects of the drug can be quite profound and can
have both physical and mental consequences (including dementia) if there is a negative reaction. I asked her doctor to put her on as little a dose as possible. When he did, her dementia did lessen somewhat, but did not disappear.
Hope this helps
John

My grandmother is 98, and this is now a common every day life occurrence. She has 2 care givers one for the day and one for the night time. She too gets mean, and at other times when she see’s me, she completely recognizes me and is happy, awake and lucid for about 5 minutes. Then she goes right back into talking to herself again. The paranoia is there day or night this I can tell yiou. But she is a big coffee drinker and they keep changing her medicine. The question remaining is this: how much longer do we subject her to testing just to keep her around? Shouldn’t she just be kept comfortable and happy with her foods and her coffee? One more thing I’ve noticed, she started drinking soda and eating cookies, she now has a HUGE sweet tooth. Which she sneaks at nnight when she thinks the care givers aren’t watching like a child.

feel free to mail me.

Lori:

I have a very close friend who was just diagnosed ? with Sundowners. He is 88,
lost his wife about 2 years ago. He has had some health issues but with the right meds he is clear thinking and aptly used the computer. My question is how long is the onset. Is it possible to have no symptoms and within a few weeks be full blown sundowners? He was fine when I
spent a week with him about a month ago and we communicated daily by e-mail. Now EVIDENTLY he is incoherent a lot of the time.
Somehow this just doesn’t sound right.
Any info will be appreciated.

I have just heard the Sundowner’s Syndrome the last few weeks. My best friends husband has dementia, Parkinson’s disease (just now showing the symptoms) and Sundowners disease. He was put in a nursing home last week. Fell the third night and now is in the hospital. She has been his 24/7 caregiver for the past 2 years because she is in denial. Now she is having seizures and has a loss of memory problem. I feel 80% of her problem is the 24/7 care she has given him. She can’t sleep at night because he is either up and piddling around in the house or he quits breathing (sleep apnea) and she counts to 8 and then wakes him up and tells him to breathe. I don’t know which one of them is going to go first. It is just heart-breaking to see. She just turned 59 and he is 65. Any suggestions on how to help her other than encouragement and friendship?
Thanks!

i wish there was sone sort of chat room where we could get on and talk to each other something like a support group

does anyone live in the sussex county delaware are iam trying to find a doctor to come to my home for my 95 year old grandmother and am having no luck she is bedridden so getting her out is not an option. it is very hard being a 24/7 care giver i almost never get a break. even going to the store is a big deal. my only help is a state home health aid that helps me bath her and change bed clothes 2 times a week.

My mother was diagnosed with vascular dementia 4 yrs ago.I have been the only caregiver for years.She is 86.She has been in the hospital for 4 weeks awaiting placement in a nursing home.Her sundowners has started again.Unknown to me the hospitalist put her on Haldol(3 doses).Her daytime agitation got worse & 3 days later it was as if she had Parkinsons.The doctor refuses to admit it was from the drug.Her symptoms of Parkinsons have subsided(10 days later).Last nite her sundowners acted up..guess what! The doctor prescribed Ambien and Haldol! I went to the hosp.at 1:30am & stayed until 3am. I gave her Melatonin,which had helped at home,hope it helped at nite.How can I get the hospital to stop giving her drugs with definite black box warnings. Benadryl helped,but affected her kidneys. I think she needs LESS light so her body can use whatever melatonin is available. She calmed right down when I got there.The medical profession needs to realize that conventional drugs DO NOT work for sundowners.

Hi Cathy, I've just introduced the ability to reply here on the site. So let's see how it goes. I hope replies do start coming in. People have so many experiences to share…

For the caregivers…I read an article recently in AARP called “The Promise”. In a nutshell, the article said that many of us live under a “promise” expressly given or implied that we would never institutionalize our loved ones “when the time came”. This was true of myself and my parents, too. But I have released my children from “the promise”. I have made arrangements by getting longterm care insurance. I found the assisted living facility and nursing home for them where I and /or my husband want to go. I told our children in 18 years I/we may need to live with assistance. I told them that they will then be the age I was when I discovered the joys of the empty nest and increased financial security because our children where no longer sucking at our finances like udders. At, 53, we began to travel, ride motorcycles, bought an RV, started cruising the seven seas, etc. I told them that we want the same for them and not to be strapped down under the burden of their parents care taking needs.

So, caretakers, crawl from under the promise and take your lives back. This does not mean tossing your loved ones in the garbage. It means being an example to your children and friends and showing them how to take care of themselves, first. You will not be able to care for anyone if you don’t keep yourself healthy and relieve the stress.

My Dad has Parkinson’s, dementia, and now Sundowner’s. He is in a carehome but when he became agressive they took him to the local hospital physic ward for almost 2 weeks. I can’t imagine why he’s confused? I really do believe its partly because of the vast amount of meds they cram down their throats to control them. I know its not an easy task to be a caregiver! I’m long distance so I can only give encouragement and empathy. I value the imformation that I can get from sites like this! I’d never heard of Sundowners before recently. Thanks to all for your input! Kay

Hello i am a 21 year old, I am not sure about anything but i am looking into this. so far i do feel more emotional at night i thought this was normal but it does affect my sleeping patterns so i looked into it, is it possible to have sundowners at such a young age from what i have seen it is mostly a problem of alzheimers. and another question why is it during the late evening not near supper in early evening it usually changes near 9-10 pm usually please someone help me out Thanks

Nice to know others are going through this. My dad is 83 and has been going downhill since they tried knee replacement surgery three years ago – he didn’t do well in therapy and went into assisted living, then lost the use of his legs (for some reason – they think mild stroke) and now has to be in the nursing home because he is incontinent and can’t move himself. He’s been sliding downhill since he went into the nursing home – Now the late afternoon/evening periods of confusion and anxiety have increased – last night the center called me at 10 pm because Dad didn’t know who any of the aides were – he’s been on good terms with them before. The doctor wants to screen for a UTI – didn’t realize until I read this what the connection was. Last time they gave him antibiotics for a UTI he got really bad stomach problems. I feel that this dementia/sundowners is, in my dad’s case, just part of being old and drifting towards death. Is it wrong to not pursue aggressive medical treatment and just accept the dementia as part of the natural aging progression? My mom says that life in old age is so uncomfortable so that people have an easier time letting go of it.

my mother has alzheimers and sundowners. she is 80 and still lives alone. for the past 5 months she has started imagining that she is keeping her great grandson, Hunter. She calls me, her daughter and another daughter and son in a panic stating that she was keeping Hunter and now he is missing. We assure her that Hunter is with his mother but she is firmly convinced that he was at her house and now is missing. we go through this just about every evening. She has spent the night at my house many times and will get up in the night looking through the house for Hunter. Before we go to bed I remind her that we do not have any children in the house but it never fails, she gets up, goes in all the rooms, looking for Hunter. Any advice on how we can better handle this situation?

thanks,

Judy Brown

I work with people that have Alzehimer’s. I have noticed that they all suffer from some type of Sundowners Syndrome. I have also known they can be combative at times. We had a resident who had it really bad and she would be awake all night. Her family brought in a lotion that we would put on her at night and it seemed to help her sleep.

My mother’s friend is a 85yr old WWII Vet. who has been diagnosed with Sundowner just last week and probably will be placed in an assisted living facility. My mother has been his live in Housekeeper/Cook for the last 8 years. The VA was giving him various drugs for diffferent health reasons over a 2-3 month span of time. He was getting addicted to the pills and started a slow decline of his physical health and then his thought process was declining. This all happened within the 2-3 months period. His sodium level is slow low the Docotors seem concerned but have not treated it. I have read up in books and the internet how these pills he was on could cause most of his physical/mental symptoms and the Doctors took him off the pills. Of course they will not acknowledge my input and keep trying different medications to help him sleep/anxiety/restlessness. Today I looked at the Life Extension Magazine site and have found many Holistic remedies he could try to help restore his health and slow the decline of demnetia. I wonder if any of the peoples who wrote about their family members have tried any Natural remedies?

My father inlaw just came to live with us about 4 weeks ago. He has had Alzehimer’s for the last 6 to 8 years. He is angry most of the time and at night it gets much worse. He has started to throw furniture about the house and hitting people. I’m really afraid he will have to go into a mental home for the elderly he is 92 years old. Has anyone out there gone through this?

Nobody has diagnosed my mother with “Sundowners” yet, except for me. I am actually going to print out some medical jargin on it for my mom. She was a nurse at one time (the worst possible patient) and she appreciates medical jargon, as opposed to anything I could offer to her, verbally. I know nothing, and never have (long-time history with my mother). I am new to this website, and I don’t know if there is a way to comment or respond to postings, other than to just post. I wanted to respond to Cloe. You sound very alone and despondent. Caring for an elderly patient is difficult, and when you throw dementia in there, you’re looking at an almost impossible task to take on yourself. I strongly suggest that you pay for help, particularly at night. Employ an individual who has experience in this area. Or, if you can afford it, find a care facility. It is not your job to care for anyone, it is a choice. God will love you, no matter what. But, when you find yourself at wits end, this is a sign that you need some help. You are only human, and you have a responsibility to care for yourself as well. Shame on her husband and his siblings for not helping her, but that’s going to be their own problem with God. They should at least open up their checkbooks to get some help for her. She needs help, but that doesn’t have to be you.

My mother’s life changed early this year. She’s had several medical problems, which have put her in the hospital and also nursing facilities. This is when we saw the dementia begin. It was when she was out of her comfort environment and surrounded by strangers. She didn’t see much daylight in her first stay in the hospital, and she started a paranoia that someone was controlling time. My mother always was a feisty, “I am right and everyone else is wrong” kind of person. She can be quite a handful these days. She is hanging onto her brain, and if she gets agitated at people during the day (usually at me or her staff), she can be calmed fairly easily. But her words can hurt. I have to remind myself that she is not mentally well, and I am. At night, she sometimes hallucinates, she chats to herself, she only sleeps at an hour at a time, and she makes demands on her staff (she’s at a private care home) throughout the night. If they argue at all with her, she flips out with anger. Anger is an emotion, fear is an emotion, as is sadness. These emotions can take over rational thought in a normal, healthy person, imagine what they must do to a fragile elderly person. The care home is not able to care for my mother, because the staff keeps quitting. It is hard to find angels. So, now I am looking into dementia care facilities that can accommodate my mother’s needs. No one in my family is willing to have her stay with them, because she is so difficult (my house is also too small), so she’ll be moving to a new, unfamiliar place and the dementia will be worse for awhile. Caring for an elderly parent is not for the weak of heart, is it?

Here are some of my thoughts on this “mysterious” Sundowner’s Syndrome: Something happens to all of us around 4pm to dawn. I always felt it was the magnetic pull of the moon, or something. When my children were ill, I always saw their fevers or symptoms escalate at around 4:00 and it wouldn’t break until dawn. Happened every time, especially with my more sensitive child. My diabetic (type 1) daughter went through a common “dawn effect” when she was in puberty, where her need for insulin increased from about midnight until dawn. I do think that getting the patient outdoors frequently during the day (or using lights) is important, as is trying to keep them active so that they are more fatigued at night. But, I believe that the condition is just a natural thing that can happen to those who are most sensitive to their environment; children and the elderly, in particular.

I hope every person who joins this discussion goes all the way back to the first post and reads every single one written since then. What you will know for sure is that you are NOT alone! What seems to us as strange and unusual behavior in loved ones for which we are not prepared, can be seen for what it is…the insidious disease of dementia.

If you don’t feel strong enough to be a caretaker, you will find out that you are. If you think you are the only one who loses your temper with a loved one, you will discover that you are not. If you can’t sleep, feel agitated, guilty, depressed, etc., you are not alone. You must find a way to take care of yourself. There is no reason that two people should live in the same nightmare.

For three years I have watched my mother go frm mild cognitive impairment to full blown Alzheimer’s. She is finally at peace in a weird little world in her mind. She is a Medicaid patient in a nursing home and she gets good care. They don’t care for her as if she is their mother, but they are kind and watchful. I didn’t think I would ever get my life back, but I can visit just 2-3 times a week for half an hour and that is just fine with Mom. She doesn’t make any sense when she talks, but she loves hugs and smiles. For a while I didn’t think I had any hugs or smiles to give because I was completely worn out…and angry. Be kind to yourself. You are just one person doing the best you can. At some point you have to let go of the person you knew and befriend the body that was your loved one.

My mothers doctor put her on aricept 6 months ago on a trial basis. In one month’s time I noticed a slight improvement so I decided to fill the script only to find out it was $200. My mother does not have drug insurance so I decided not to fill it. I did try to write to the drug company because I have heard that sometimes they give assistance but I never heard back from them. Mom is now in a nursing home setting and has been diagnosed with Sundowners. I am feeling really guilty that I should have kept her on the meds. Does anyone know of a less expensive drug or where I might get it less expensive.

Susan

As children, partners, and friends of Sundowners, we share a common role. We become a beacon of light in a Sundowner’s dark world. My Dad, who’s almost 83 has Sundowners. It rudely moved in and has taken over a his life. I am blessed to live next door to him in an adult style community of homes. I first became aware of Dad’s problem Christmas Day 2008. My Mom is in a nursing home, but I brought her home for our family Christmas Dinner. As I was busy in the kitchen putting the dinner on the serving table, Dad turned to my brother,and said, “We should go pick up Mom for dinner.” But Mom had been sitting right next to him for the last 3 hours. On grey days and winter days, he’s totally lost. At night time he’s beyond lost. Everyday, I turn on all the lights in his house, the bathroom, den, kitchen , foyer, and this helps. When the sun sets each evening, Sundowners, comes in and steals his mind, destroys our family relationships, and slowly begins the nightly torment of his mind. There’s never enough light to drive Sundowners away. It’s tough on the Sundowner and their caregivers. I know how each one of you feel. I find great comfort in God’s Word, especially in Psalms 23. I am so thankful the Lord walks beside me each day, He supplies all my needs and more. Blessing to you and those you love with special needs. May His Light always shine in your life.

—sorry–my internet just shut off–I couldn’t edit out typos before previous question was apparently sent

My problem is that my incontinent 95-year old mother-in-law has (since coming home after a two-week hospital stay for a UTI and pneumonia) started the new habit of taking her clothes off in the evening. How can a “feeble” frail woman who gets out of breath after ten steps have the strength and dexterity to take off a pair of sweatpants and her Depends without setting off the bed alarm?? Her evening meds are usually just Tylenol PM, and her other meds trials, (which have not helped except to knock her out for four hours, Xanax, Haldol, Ambien,)do not seems to help. Neither can I rationalize with her that she needs to leave her clothes on for hygiene’s sake. I thought about tightening a sewn-in drawstring in all her pants so that she could not physically take her clothes off, but she hates anything tight. The goal is to keep clothes on, not cause further agitation. She is not rational enough to offer any reason for stripping. Thanks for this very helpful site. Wherever unending attempts to find solutions to frustrating problems go, so go we!

I’m still reading about Sundowners and I want to address Chloe’s August 31st posting.

Hi Chloe, when my husband’s 88-year-old aunt suffered a brain-sroke in Jan 2006 we were trying to care for her at her home rather than put her in a nursing home. The doctor said she would respond quicker if she could be in her familiar surroundings. I knew this would be taxing on my husband and me but I wasn’t working outside the home and I could devote the time to her. The first thing I did was ask the hospital (Medical College of VA) about any support groups or counseling that we might be able to receive to help us better understand his aunt’s condition and how to serve her needs better. As a result I found out we qualified for a FREE counseling program for families of head trauma victims. Actually, they made an exception for us because the cause of his aunt’s brain stroke was not head trauma, it was instead the drug Coumadin, a blood thinner commonly prescribed to prevent heart attacks and strokes. Isn’t it ironic that the drug prescibed to prevent a stroke was charted as the cause of the bleeding in her brain. It was also noted on her chart that she was not to receive any blood thinners ever again, not even aspirin.

Anyway, Chloe, the point of all this info is that you need to seek out a support group and if possible please get counseling. Contact your local hospital(s) and see if they can give you direction. I think this website is wonderful but you need someone to talk to who is trained to deal with the issues you are facing. What we soon discovered in our weekly sessions with a hospital psychologist is that WE needed the counseling as much for ourselves as for his aunt. Without it I know we would not have been able to cope with all the adjustments of caring for his aunt’s condition, and with it we were fore-armed with information that helped us serve his aunt’s needs better. I’m sad to say she eventually did have to be admitted to a nursing home but nevertheless we remained actively involved with her care until she passed away.

We have well-meaning friends and family, Chloe, and its very helpful to have them as support. But they are not trained in how to equip us with the knowlege and skills we need to help our failing relatives and to keep our ownselves healthy both mentally and emotionally. And in your case, you don’t have much if any support at home. So please serve your own needs and then you will be better equipped to serve your mother-in-law. But, if you find yourself sinking, Chloe, then recognize that sometimes, no matter how much we want to care for someone at home, it may be in their best interest and yours for them to be placed in a nursing home. I know I said I would never do it, but that was not taking into account that sometimes we just aren’t physically or emtionally able to what we most want to do. And, remember, you can still be very active in her care. I was at the nursing home with his aunt daily, I even did her laundry rather than have them do it. I kept track of the meds they were administering, we had weekly sessions with the staff at first and then monthly. You don’t have to feel like you have failed her because you have not. You have given her a wonderful gift of yourself and she may not realize it but forgive her. But please do get in a support group now and keep it up even if she has to go to a nursing home. Be well, Chloe, you are in my prayers.

This is in reply to Beckys advice to Chloe. Becky: I am not sure what state you live in,but in my state the nursing homes DO NOT want a family that tries to have input on their loved ones care. I gather from what you wrote that you do not know how nursing homes really operate. It’s called:D-R-U-G-S. How many people have you heard mutter the same thing: “my dad went downhill when he went into a nursing home”. The reality of it is that they drug people.That’s the answer for behavior problems/issues.They can spend a few bucks a month on old fashioned psychotropics to quell any human features a resident has left to make them easy to take care of..plus get more money from Medicaid. The flat rate is low,but once you add on feeding,hoyers,tubes,etc they get a few more bucks. When the nurse says dad had a good day…good for them,he’s like a vegetable so he was no problem…bad for him because all he did was eat,sleep & defacate in his diaper. Remember Dad used the toilet before he went in? Hmm..wonder why he’s incontinent? Ever notice the lack of fluids for residents? Yes,the more they drink,the more they pee,the more diapers they go thru. Ever notice a strong urine smell? That’s because limit their fluids,save on diapers?Awake & oriented? Then they better have more staff and activities for the residents. I have seen facilities that allow 30 minutes for a meal,not done eating? Too bad Dad..off to bed you go. They are like planes on a tarmac ready to go to bed. Yelling?fussing?trying to get around…awww are you tired? Do you want to go to bed? Yes,under the guise of getting less money from the government they cut back,but the Administrators still have a nice BMW or Mercedes.
Cash pay? Well..then it’s like you are in a no-kill shelter.They will keep you alive forever! Cash is twice what Medicaid pays.
It’s a lousy system…animals in the SPCA get treated more humanely. Would the employees of a nursing home allow a physician to drug their children into a stupor? Would the government allow it? Absolutely not..but seniors are treated like kleenex..used and in the garbage.
I’m disgusted and the system is disgusting.
And the geriatricians that are “wonderful”…aren’t really.They just know the right narcotics to use to “taser” Dad or Mom.
I hope all you health care “professionals” that read this see yourself. We all have to face the same maker..and while you are doctors and nurses are ruining our seniors..God is keeping score of the credits and debits.

Hi Marcia, on October 22 I posted TWO posts. Perhaps you didn’t read the first one I posted about my mother just before my post to Chloe. If you did read it then you weren’t paying attention because you are very angry about health care and I can certainly understand why. There are most definitely situations throughout the country like you have described. I’m not attacking what you say at all.

We live in Virginia and the nursing home is located in a small town where my husband’s family has resided for most all their lives. It’s a small nursing home, only about 60 beds. It’s probably the exception, not the rule. However, I have volunteered in larger nursing homes in various cities and states over the years and I personally know people who work in the health care profession. My own mother worked in nursing homes in various states and was an administrator of a private nursing home in Michigan for several years after my father passed away in 1985.

Please understand that unlike your experience, Marcia, not all nursing homes and health care professionals are wretched. There are caring staff at nursing homes and caring healthcare professionals as well. We all have to be careful not to make sweeping generalizations based on our own personal experiences. I am just as guilty as the next person to do that and I apologize to everyone on here who may have a loved one in a nursing home.

In any case, Marcia, I am in my 60’s now and my husband and I are married for 30 years. He’s an only son and also the only nephew on his mother’s side in a position to help his mother and father and her two sisters and an uncle. We went through a decade of failing relatives, there is light at the end of the tunnel. Not everyone has the financial means to care for loved ones at home. You do the very best you can, Marcia, with what you have to offer your loved ones.

My mother is 86 and in good physical health. I have an 83 year old father that is in worse physical health than my mother, but has his right mind and can still drive and get around-slow but can still manuver. Mother has demetia, which i believe has turned in to alhimerzer(sp?). She is on Aricept,Namenda and Cuminduan (blood thinner) and has been for years. She is usually good in the mornings and knows who we are and can talk somewhat intelligently, but she has the hardest time from 3:00 til bed time. She begs to go “home”., sometimes thinks she has kept the grandchildren who are now grown and she does not know who we are. She will ask “where’s daddy? Does he know i’m here? Is he coming to stay here tonight?” All the time Daddy is sitting right next to her on the couch. All these questions are asked several times from 3 to bedtime. My parents have been married 63 years and have always done EVERYTHING together. My dad never went anywhere without my MoM and now he is the one who is really having a difficult time with her problem. HE does not understand why she is fine – almost completely sane in the mornings and from 3 to bedtime- as he says she’s “Crazy”. They still live in the same house they have lived in for 60 years and my sister and myself go there daily-i get mama up in the morning, feed breakfast to both, give medicine and almost every day i dress mama. We do have someone to come in 2 times a week to stay and help with dressing and watching them from 9-2. My sister comes in afternoon and feeds them supper, medicine and get’s mama ready for bed. This is when she is experiencing the sundown syndrome. I ususally come over at 5:00 from work to see what is going on because we do not want my daddy to get frustrated with her as he most of the time does. We are trying to tell him to go along with her. for example, she’ll say, “where are the babies, i can find them.” I will then say, “Oh their mama came and carried them home a few minutes ago.” This usually satisfies her. Then she may ask, Does Daddy know i’m over here? ” I will say “yes he knows” She will say, “How do you know? ” I will then tell her that i talked with him and he said it was ok for her to be here and that he would be here soon. Again she is satisfied. BUT the problem is that if and when we are not there and she ask the off-the-wall questions, he tells her like it is. He does not pretend with her. He will tell her that there has not been any babies here at all. Some times he gets so agravated that he will finally say to her that she is crazy. In fact he says we are lying to her, which i do not consider myself lying. My parents are good christian people and my daddy does not want to do anything wrong. I am a christain also, but in cases like this i do not consider this a lie. I know she believes what she is saying and to keep her from getting upset and start crying, we need to go along with her. Now sometimes she will get her shoes on and say she is going home and we do have to handle that different. we just cant let her go outside alone. But then we think of something else like “stay here and daddy will be here for you soon.” ANY THING we can do to keep her happy. As most of you have heard the saying, “IF MAMA’S HAPPY THEN EVERYONES HAPPY”. that is more truer today in our life than ever before. Again as some of you are experiencing, i am having trouble believing this is actually happening to our lives. My mother has always be very active and a peoples person. She was the best cook in town and now does not even know how to boil water. She was always very concern about her clean house and dressed very well, Now she is not even aware about any of it. I know i’ve gone on and on, but i just stumbled on this site also and i guess i had to vent. My mom was the glue that held our family together and this is just so hard for our family. She has always begged not to be sent to a rest home and by the help and grace of God we are trying to do all we can not to send her. Of course we do not know what the future holds, but i pray that God in his mercy will take her home before we ever have to make that decision. Maybe that is selfish, but i know that is the way she would want it to be. For all of you who are going thru this nightmare, just take one minute at a time and learn to call out to God for his help–for He is the only one who can. He has been there with us and he will you too if you will just call on Him.
Sorry i’ve gone on and on.

Has anyone ever considered that low sodium may be causing this symptom. Blood sodium level has a cicadian rhythm which starts to drop in the evening. Low blood sodium is known to cause psychotic symptoms. Many elderly are also told to reduce sodium consumption to avoid hypertension. The combination of a low diet of sodium and a circadian drop may be putting them at risk for hyponatremia. If blood pressure is not a problem, a dietary concentration of sodium equal to that of normal blood concentration might fix this problem.

my mother is 85 yrs old. and has dementia i have had problems with her lately in the evenings,staying awake all hours of the night and packing clothes gathering things getting dressed. and i have just started her on risperidone and i have found out that it works well for claming them down when there aggitated, but alsoif there really tired from lack of sleep it has a reverse reaction. they end up fighthing the sleep with makes it worse. now here it is morning and she’s not wanting to get up. she’s been awake all night.so it’s almost impossible to know what to do at this point.i’m opening for suggestions!

I am the 24-7 caregiver for my 95 year old mother-in-law. I am sure there are those who will disagree with me, but after two years of seldom getting more than a few hours sleep each night, my husband decided that a time-release sleep aid, Ambien CR should be tried. It works great– she now sleeps 8 hours at night.Sometimes she is incontinent, but I use bed pads and Depends, so it is a small price to pay to get some rest, for both of us. Formerly she would be up at night, roaming, calling her son on the phone at 3 a.m. talking to her imaginary friends, yelling in nightmares, etc. Then she would want to sleep all day–finally we are now on a night-sleep schedule and her daily activities are much more productive since she is rested.
Side effects will no doubt vary, but she only complains of an occasional headache. Since she is on bp meds and lasix etc it is hard to tell what is going on. We tried various things, such as tylenol pm, and xanax previously and the best we could hope for was four hours of calm time.
Her insurance and medicare will not cover Ambien CR, and locally it runs about $175 for 30 pills. We gritted our teeth and paid it, and now we are trying to get authorization from the Dr. to allow the ins. to pay for it. Not easily done, lots of paperwork, and the DR. is already so busy.
Hope this helps. I try to remember that if I get sick or become unable to care for her, that we are really up the creek. Psychologically, I find I am much less stressed and more patient when I have gotten some sleep too–so, for us, Ambien CR works. Good luck.

My mom is 86 and was recently diagnosed with a significant Urinary Tract Infection. She was put on a strong anti-biotic and within three days there was a remarkable improvement. She started sleeping through the night, was no longer agitated. She used to constantly try to take her clothes off anytime and anywhere and would not stay in bed at night. She never slept. She was constantly on the move and getting into anything she could get her hands on. All of that is gone. Praise God! We just take one day at a time.

My mother is 79, and she tends to lose motor skills at night. What I find that worked was putting her on a bedtime schedule. 9:30pm is when I put her to bed, and she will sit up for about 10 minutes then fall asleep. She stays asleep until the health care worker gets her up the next day. This schedule also helps her with bowel movements (which usually occurs at night). Try to alter the schedules before you give your loved ones more medication.

Wow…can’t believe there’s so much sundowners and how it affects everyone. My mother 88, got sick in May (cryptococcal meningitis), the drugs they put her on shut her kidneys down and after 2 months she passed away. During this time, my father (90), fell and broke his hip, was in the hospital at the same time as mom (thank goodness they were in the same place, same time)…two weeks later after a very bad experience with a local rehab clinic, I brought them both home. Mom, I thought, would do better with being home and perhaps get stronger…wrong! Dad, did get better but dymensia has been playing a large role in his life….my husband and I moved out of our house and into my parents house to care for my dad and he is getting increasingly worse with keeping me up all night, talking, yelling at people, trying to get out of bed…I find myself up every 20 minutes making sure he’s ok…our doctor prescribed a sleep medication, which worked for about 2 weeks and now…it’s not working AT ALL…I try to talk to him about it when he is lucid during the day and of course, he says, “that can’t be, I’d remember it”…I’m interested in anything that will help dad to get a good nights rest…and me too! I am going to try leaving a light on in his room and perhaps the tv to see if that helps…because like so many of you have said…they sleep great during the day…so, what harm can it do? I’ll keep you posted.

My mom just turned 87. Lived on her own and drove up to a year ago. We sold her house and put her in a beautiful senior apt. where the city senior center was. she hated it, cried everyday, wanted her house back,never liked it, stayed at either my house, or my sister. Got rid of the apt. (diagnosed with vascular dementia) and lived alternating with us onver the past year. We could not leave her alone, would panic and try to call us 9forgeting how to dial) would leave the house, go to a neighbors and ask them to dial us. So sad that THE BEST Mom, helped us with our kids, now 16,13 & 9 and 6, since the day they were born.
Just moved her to an assisted living, thinking it would be better,,,people her own age, (since loud noises bother her. when we close a door she yells “ouch” or any other noise.)
but hard since she doesnt really like “old people”! My sister and I both hairdressers, did her hair and makeup everyday. Now she is having sundowners at her new place. I have had her her at least once a week spend the nite in the past month since she has been there. Last nite my brother got a call, she wanted out! shes told me its dangerous–(had this happen in a hospital last year too)My brother tried to calm her done, tell her its all fine etc. I want to bring her overnite this evening for New Years Eve. brother and sister not so sure i should..might disorient her more and have to get reacclamted to her place? Hate to to be with her for a holiday. Life is so short and precious. Nothing good about getting old. Very sad to see our wonderful,loving parents go through this. I am so sad to see her scared.Mom,we love you! I am soorry this has to happen to you.

lack of understanding made it difficult for my siblings and I to accept the evidence that has been in front of us. My father has been living alone at 80. He has shown signs of forgetfullnes (not extreme very slight) but he becomes fixated with the furnace in the winter. He will not let it rest he writes down when it goes on/off length of time running and calls fire department, gas company, furnace repair and family mostly in the evening 2A.M or later. he is up all night walking around checking on things always using flashlights (sundowners???) We were trying to get him to agree to assisted living care with little to no success. I finally had to take him to the hospital for an unrelated incident and his mental state has gone downhill rapidly like in 24 – 36 hours. Prior to this the only meds he has taken is lisinopril 40mg. Doctor as him on an anti depresant now, yet he now seems more depressed. Thinking we would have been better off keeping him home in familiar surrounding and trying to take care of him there. In my heart I think that would be best for him but my head is telling me otherwise. I feel like we are losing him (mentally) very quickly and don’t know how to help him.

(2)her not remembering where the toilet is; (3) being able to respond to simple requests, such as “take out your teeth”. Still, as I look back over the last ten years, she had five very good years with us, four years in decline, and 2009 saw many UTI’s, bouts with pneumonia, and dehydration, and the dark cloud of sundowners every day at 4p.m. She seems very unhappy now all day and family relationships are deteriorating, and for the first time I can see why people put their loved ones in nursing homes. “She doesn’t know where she is anyway” we tell ourselves. So perhaps this is the beginning of the last stage of at-home family care–don’t really know since this is the first time we are experiencing it. It’s hardest on my husband, who can see the sharp decline, and he feels helpless. I finally today gave up for the millionth time trying to explain, “This is where you live, you don’t have to go anywhere, your brothers and sisters are all gone except for one who is ill.” I cannot pull her back to reality. She has gone where all old frail minds go–where we ALL will go probably. So, even though I sense you are feeling guilty about your dad–don’t. He’s in his own world regardless, and we cannot join him. We can just observe and see that our loved ones are really already gone. How else could we bear to part with them? Good luck to you. (Sorry I couldn’t proof the previous note–hit the wrong button!)

My father has been diagnosed with Multiple Myeloma (Bone Morrow Cancer) with this comes confusion and exhaustion. He had a confused episode that lasted more than 30 minutes, but most of the time he is lucid, just can’t remember small things. Great memories of the past, but not current things. A nuerologist stated he had “a sundowners episode” Is this the beginning of Alzheimers and is it worth fighting this Cancer. He is 77 years old. Other symptoms….Can’t sleep, no energy, no appetite, loss of weight, depression, constipation, weak bones, (now on top of all this, daughter has MS, and Sister/Law has breast cancer) I need some answers

Light is a friend to someone who suffers sundowners. Music is another friend. Be patient. Try and get sleep and God Bless us all. This is a battle no child should have to go through

Taking care of someone who has sundowner’s or any form of dementia is a thankless job, because you usually don’t see that you are making any progress. You do the best you can to follow common sense and the doctor’s orders, but there is always the obstacle of what is going on in your loved one’s mind which prevents your care from reaching them. For example, my mother-in-law thinks the cannula from her oxygen is choking her if it touches her neck. We put it on her from behind and over the ears so that it nowhere touches her neck. She will not be convinced, and she will not leave it on. We also know from her experience in the hospital she will not wear an over-the-face oxygen mask.
So she is fighting to take off the very thing that will help her feel less short of breath–which she frequently complains of. It is difficult for me, the caregiver, to not feel a sense of frustration and anxiety that I cannot reach her, and I don’t know how to accept that in some instances THERE IS NOTHING I CAN DO to fix this. She will not, CANNOT, listen to reason, medical explanations, or even pleadings (“This is something you can do to help your own health–you are lucky there IS SOMETHING you can do to help yourself,” etc., etc.,)
Tomorrow morning she will not remember anything that happens tonight. She will feel tired and her congestive heart failure drags her overall condition down. So here it is 3 a.m. and I am all revved up from arguing with her, and her sleep aid has kicked in and she is finally sleeping–but I know the oxygen will not stay on, as soon as she can take it off, she will. She will also take off her Depends if she can, and pour her drinking water in the trash and then tell me she drank it. What I constantly pray for is the serenity to accept the things I cannot change–the loss of her mind–and the wisdom to know WHEN I cannot change the situation.
My sister-in-law says a refusal to do something, like drinking enough liquids, is my mother-in-law’s way of shutting down (she is 95), that she and her body are more accepting of her death than I am. And (this is the hard part)that I should just let her go. She says I should accept that this is not in my hands any longer; but I continue to fight it, and write on this website, and ultimately feel a little better that I can express my sense of hopelessness in this anonymous forum. Whoever you are reading this, if you waded through it this far, thanks for reading. Pray for all us caregivers who sometimes feel we would rather jump off a cliff than do this another day–yet we do it another day…

Thank you Brenda for your post. I’m sure you are doing a good job. So, hang in there. I can identify with what you are going through.

I’m writing this at 1:45 AM as I watch over my father in his hospital room.

My father is 77 years old and has myelodysplastic syndrome (bone marrow is not properly producing blood cells) and he also has failed kidneys (ESRD). He has been on dialysis for a total of 2 weeks so far.

He appears to be afflicted with a combination of “dialysis dementia” as well as sundowners syndrome. All of this is due to his body trying to adapt to dialysis. I believe that is the correlation because it all started the very first night he had dialysis.

So, he is tormented and unstable at night. Then, he tries to sleep during the day and is grouchy towards family, nurses, and physical therapists who try to help him in the daytime. I’m trying my best to help him reset his internal clock with respect to daytime/night by getting him more exposure to sunlight during the day.

This is approximately my father’s 4th week in the hospital. So, the nurses said he might also be suffering from a bit of “hospital psychosis” from being in a room/bed for so much time.

He also has nearly zero appetite. This is so concerning to me because I don’t know how his body/brain will be able to adapt and possibly rejuvenate at all if he has so little nutrition.

I wish I could stay up with my father everyday and watch him. But, the reality is that I have trouble working during the day when I stay up with him at night.

I’ll stick with it as much as possible, even if I can only stay awake until midnight some days, because I love him and I know he would have done the same for me.

Everyone out there who is in a similar situation, my thoughts and prayers go out to you and your loved one.

Best Regards,
James

Hi Kathy.

I will start off by saying that I am not a clinician and am not giving any advice with the following comment. I’m just sharing my thoughts from reading your post.

It seems too soon for your mother to be suffering from sundowners syndrome. From what I’ve heard and read, it usually kicks in after an extended number of days in the hospital.

Secondly, when my father had bypass surgery several years ago, he too wasn’t quite right mentally for awhile. But, it appeared to be from the fact that his body was trying to recover from the very aggressive surgery he had just been subjected to.

Major surgery, reduced nutrition, and reduced sleep all in conjunction with increased medications can easily cause confusion and irritability in even a young person. So, an older patient would be even more succeptible.

Regards,
James

My mother was recently told she has sundowner syndrome, This morning around 3:00 am she woke up scared that something bad was going to happen to her and she wanted me to call my brother, and sister’s and take her to the hospital. I’m not sure when this first started but I’m worried about her , she fears that she is going to die and now she wont go to sleep. If someone out there is going to the same thing please tell be what I can do to help her. Thank you to anyone who responds. God bless

READING ALL THE INFO FROM YOU GUYS HELP SHED THE LIGHT on my 74 yo husband who will be find all day, but around 4 pm his mind tell him to get into his car and drive, sees people that are not in the house, and forget who I am. He been diagnosed with dementia for 2.5 years, taking aricept and zoloft. Also klonopin for restless sleep and night terror. I am grateful that so far he sleeps well thru the night. Brenda I am so sorry that you are having to go thru this and don’t seem like any relief in sight. I pray God will give you more strenght and endurance. Be sure to take care of you, too. Hang in there! It makes me realize what may happen to our life in years to come. God Bless.

Thanks for your kind words, Barbara. After much gut-wrenching thought, we have decided to put my 95 yo mother-in-law in a nursing home for a while. We hope we are doing the right thing, but we can no longer give her happiness or contentment here. She is as someone leaving a sunlit field and entering a dark woods of fearful sounds, like a baby constantly crying for help, she goes into sundowners at 2 in the afternoon, “I’d better get ready before dark.” She, even in her confusion, knows what is coming, and sees strangers in her house, calls to us for help, and wonders why no one will take her to safety? Why won’t we help her, she wonders?
We have only initiated the paperwork, and still have days ahead of guilt. Our hospice counselor gave me a comforting perspective on the situation I had never considered: after five days of hospice trying to give respite care for my mother-in-law, they were drained. The counselor said, “We are a full staff of professionally-trained medical workers. You and your husband have been doing this for YEARS, and you have only just now gotten tired. We only did it five days!” She told us we have been doing a great job of caring for her, and that the decision to try a nursing home does not mean we are putting her in prison, only that we are handing the bulk of her care over to professionals. So wish her luck in this new phase of her life. We bottomed out last week, and pray she will have some kind of peace and security, which is all we ever wanted to give her. All of you out there who are every day watching your loved one enter the dark woods and know too well you cannot go in there with them, have courage.
Be strong when you can, forgive yourself when you can’t, and let go when you must.

I’ve read some of the above comments, and, although I can certainly relate to everyone’s concern (my father died at 85 after 3 strokes, my grandmother lived to 101 and now my mother-in-law has been diagnosed of Sundowner’s Syndrome), part of me says:

30 years ago, it was normal for old folks to becomed SENILE! It was, for some, not all, a normal progression to DEATH. Yes, folks, if we live long enough, some of us will develop mental inadequacies. But today, we all want a reason, a name, and a magic pill to correct the condition. Wake up, folks. Death is knocking on the door, and this is just a precursor.

In light of a book I recently read, I thought I would recommend it here in reference to Sundowners Syndrome. It’s called “When Pigs Move In” by Don Dickerman. He is a Christian—and this book talks very straight about the ministry God gave him as he was dealing and ministering to mostly prison inmates. He found so many of them (even the ones who had become Christians) still had certain torments—that they just couldn’t get a handle on—had demonic attachments. It was simply a matter of casting them out in Jesus name. Many in our culture today—will think this is way too spooky and would not happen in the USA—but I encourage you to read the book. He is very down to earth. If any of you read the Bible—he gives many references to this being a necessary part of our walk as Christians. So—–he also mentions many other areas that he sees these problems—and some are with people with emotional disturbances —such as Sundowners Syndrome or panic attacks or many mental illnesses. One typical comment people say they feel—is that they feel tormented. Even Pastors can have these attachments—which one I read about had gotten an attachment through a visit to a foreign country (where vodoo was commonly practiced) on a mission trip. Or—these can get passed down from previous generations, or through traumas….so many different avenues. My mother has some form of dementia—–which has been incredibly painful because of her seeming to be normal one minute—then go into a rage with all of these crazy accusations against my husband and me. Since reading the book—I have been praying differently for her—and have seen an improvement! Things are not totally solved—but improvements. I am not a professional—but know with all that I am dealing with with her—I am willing to look into whatever may help. Perhaps this book may be of help to you.(I ordered mine from Amazon)
God Bless and I hope your loved ones find some help.

to Maria Nekludoff: Of course, as you say, “death is knocking”, but this does not mean we have to let our loved one endure the torment of sundowner’s if there is something, ANYTHING, we can do to lessen their discomfort for the time they are with us. The same God who makes people senile also gives caregivers the intelligence and strength to search for solutions. We may fail, because senility is a natural part of aging, but we will not fail because we have given up. Each of us must deal with the inevitability of death in our own way–and this website has helped me on many a long dark night. Best wishes to all who are still raging against sundowners, and to those who can more peacefully accept it.