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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I wonder if any of you out there has a problem of a sundowner’s loved one who will not leave there clothes on at night? This is becoming a problem bwcause my 95=year-old mother-in-law is incontinent and I have been really lucky thus far that she has alerted me in time to her toileting needs, but
—sorry–my internet just shut off–I couldn’t edit out typos before previous question was apparently sent
My problem is that my incontinent 95-year old mother-in-law has (since coming home after a two-week hospital stay for a UTI and pneumonia) started the new habit of taking her clothes off in the evening. How can a “feeble” frail woman who gets out of breath after ten steps have the strength and dexterity to take off a pair of sweatpants and her Depends without setting off the bed alarm?? Her evening meds are usually just Tylenol PM, and her other meds trials, (which have not helped except to knock her out for four hours, Xanax, Haldol, Ambien,)do not seems to help. Neither can I rationalize with her that she needs to leave her clothes on for hygiene’s sake. I thought about tightening a sewn-in drawstring in all her pants so that she could not physically take her clothes off, but she hates anything tight. The goal is to keep clothes on, not cause further agitation. She is not rational enough to offer any reason for stripping. Thanks for this very helpful site. Wherever unending attempts to find solutions to frustrating problems go, so go we!
My mother lives 700 miles from me and I just learned she was placed in a nursing home and is now in the hospital with bleeding and nutritional loss. They say they don’t know the source of the bleeding. I’ve been reading up on what they say my Mom may have, Sundowners. If they are administering anti-psychotic drugs to Mom then there’s no telling how her brain and body will react to those drugs. I have read several of these folks issues on here with loved ones behavior who are on these crazy anti-psychotic drugs. These drugs can cause all kinds of side-effects and any psychotic drug can cause more psychotic behavior. Every single one of them can cause psychotic behavior.
It’s absolutely absurb what’s going on with these drugs and they keep administering them. When I read your poor 95-year old mother has been put on these drugs (Haldol is very strong) it doesn’t surprise me that she can take off her pj’s. They tried to put my husband’s aunt on an anti-psychotic in the nursing home and the first one the doctor prescibed was one that would have interacted with her other medications and if I hadn’t caught it then it’s hard telling how that drug would have affected her behavior and her health.
You mother is on not one, but THREE drugs that are designed to target her brain cells and they all have terrible side-effects. I know how drugs can affect your behavior and your health because I had a long-term sprint with Cushings Sydrome in the 80′s and they put me on and off of anti-psychotic drugs. I’ll have nothing to do with them and I would never have myself or anyone in my care on anti-psychotics. They can cause suicidal urges as well but the doctors keep on prescribing them, even to people who are already suicidal.
I will bet they have my mother on an anti-psychotics already, if not multiple brain-altering drugs. It is a hellish thing to do and that’s why I won’t put my loved one in any medical facility to die, among other reasons. I am trying to get my siblings to agree to let me have her. I would rather deal with her issues and the inconveniences they cause than to live with this uncertainty of what is happening to her and being done to her by strangers. I know what’s involved in caring for sick elderly relatives, my husband had five that we were directly involved in.
You and your mother are in my prayers, Brenda. There is help for these things without using drugs. I reccommend Doug Kaufmann and other holistic websites for non-medical direction. However, here’s something I just found that may be helpful. Except for the drugs it refers to, I believe these are helpful suggstions:
What to Do for a Person You Suspect of Sundowning
Possessing a clear understanding of what a person is going through will go a long way to preparing your mind and body for a healthy response. Gerontologists recommend staying calm and reassuring to convey a sense of peace and tranquility. Never confront a sundowner, accuse them of being irrational or try to convince them that the feelings they’re experiencing aren’t real. Suggest a soothing drink or a nap to help restore balance. Close drapes or shades late in the day, and divert attention from clocks and watches. Involve the sundowner in a favorite structured activity. Additionally, make certain the sundowner’s basic needs — like hunger, thirst and hygiene — are being met to reduce stress. When all therapies have been exhausted, turn to oral medicines, patches and other chemical therapies being fast tracked by medical researchers. At the most extreme, antipsychotic drugs and/or sedation may be prescribed to help sundowners find peace from the storms raging in their brains.
I’m still reading about Sundowners and I want to address Chloe’s August 31st posting.
Hi Chloe, when my husband’s 88-year-old aunt suffered a brain-sroke in Jan 2006 we were trying to care for her at her home rather than put her in a nursing home. The doctor said she would respond quicker if she could be in her familiar surroundings. I knew this would be taxing on my husband and me but I wasn’t working outside the home and I could devote the time to her. The first thing I did was ask the hospital (Medical College of VA) about any support groups or counseling that we might be able to receive to help us better understand his aunt’s condition and how to serve her needs better. As a result I found out we qualified for a FREE counseling program for families of head trauma victims. Actually, they made an exception for us because the cause of his aunt’s brain stroke was not head trauma, it was instead the drug Coumadin, a blood thinner commonly prescribed to prevent heart attacks and strokes. Isn’t it ironic that the drug prescibed to prevent a stroke was charted as the cause of the bleeding in her brain. It was also noted on her chart that she was not to receive any blood thinners ever again, not even aspirin.
Anyway, Chloe, the point of all this info is that you need to seek out a support group and if possible please get counseling. Contact your local hospital(s) and see if they can give you direction. I think this website is wonderful but you need someone to talk to who is trained to deal with the issues you are facing. What we soon discovered in our weekly sessions with a hospital psychologist is that WE needed the counseling as much for ourselves as for his aunt. Without it I know we would not have been able to cope with all the adjustments of caring for his aunt’s condition, and with it we were fore-armed with information that helped us serve his aunt’s needs better. I’m sad to say she eventually did have to be admitted to a nursing home but nevertheless we remained actively involved with her care until she passed away.
We have well-meaning friends and family, Chloe, and its very helpful to have them as support. But they are not trained in how to equip us with the knowlege and skills we need to help our failing relatives and to keep our ownselves healthy both mentally and emotionally. And in your case, you don’t have much if any support at home. So please serve your own needs and then you will be better equipped to serve your mother-in-law. But, if you find yourself sinking, Chloe, then recognize that sometimes, no matter how much we want to care for someone at home, it may be in their best interest and yours for them to be placed in a nursing home. I know I said I would never do it, but that was not taking into account that sometimes we just aren’t physically or emtionally able to what we most want to do. And, remember, you can still be very active in her care. I was at the nursing home with his aunt daily, I even did her laundry rather than have them do it. I kept track of the meds they were administering, we had weekly sessions with the staff at first and then monthly. You don’t have to feel like you have failed her because you have not. You have given her a wonderful gift of yourself and she may not realize it but forgive her. But please do get in a support group now and keep it up even if she has to go to a nursing home. Be well, Chloe, you are in my prayers.
I have had the worst experience of my life this year.My mother has dementia.Ended up in a ?good? nursing home and has gone downhill since then.She was a nice little lady with dementia. Since they do not have any activities,she had nothing to do.Within 7 days she was put on depakote & paxil.That was the last time she functioned.Within 21 days she was on baby food & mechanic lift.She is now on an extremely high dose of depakote & haldol.She cannot talk,use her hands,open her eyes.The nurses won’t even acknowledge or chart her lethargy.When she is in a stupor,they say “she’s real good today”.HUH? A good day for employees,but not her.She cannot chew or swallow.She no longer has the urge to urinate or have a bowel movement,due to the haldol.She might have only days or weeks to live because of weight loss,dehydration,decrease in respirations.This woman functioned upon admission!! The nurses will chart her “misbehavior” but not the adverse effects of the medicine.This is clearly negligence,behind the mask of treatment.
Remember to be your parents advocate!! They will become victims a/k/a prisoners in a nursing home.
This is in reply to Beckys advice to Chloe. Becky: I am not sure what state you live in,but in my state the nursing homes DO NOT want a family that tries to have input on their loved ones care. I gather from what you wrote that you do not know how nursing homes really operate. It’s called:D-R-U-G-S. How many people have you heard mutter the same thing: “my dad went downhill when he went into a nursing home”. The reality of it is that they drug people.That’s the answer for behavior problems/issues.They can spend a few bucks a month on old fashioned psychotropics to quell any human features a resident has left to make them easy to take care of..plus get more money from Medicaid. The flat rate is low,but once you add on feeding,hoyers,tubes,etc they get a few more bucks. When the nurse says dad had a good day…good for them,he’s like a vegetable so he was no problem…bad for him because all he did was eat,sleep & defacate in his diaper. Remember Dad used the toilet before he went in? Hmm..wonder why he’s incontinent? Ever notice the lack of fluids for residents? Yes,the more they drink,the more they pee,the more diapers they go thru. Ever notice a strong urine smell? That’s because limit their fluids,save on diapers?Awake & oriented? Then they better have more staff and activities for the residents. I have seen facilities that allow 30 minutes for a meal,not done eating? Too bad Dad..off to bed you go. They are like planes on a tarmac ready to go to bed. Yelling?fussing?trying to get around…awww are you tired? Do you want to go to bed? Yes,under the guise of getting less money from the government they cut back,but the Administrators still have a nice BMW or Mercedes.
Cash pay? Well..then it’s like you are in a no-kill shelter.They will keep you alive forever! Cash is twice what Medicaid pays.
It’s a lousy system…animals in the SPCA get treated more humanely. Would the employees of a nursing home allow a physician to drug their children into a stupor? Would the government allow it? Absolutely not..but seniors are treated like kleenex..used and in the garbage.
I’m disgusted and the system is disgusting.
And the geriatricians that are “wonderful”…aren’t really.They just know the right narcotics to use to “taser” Dad or Mom.
I hope all you health care “professionals” that read this see yourself. We all have to face the same maker..and while you are doctors and nurses are ruining our seniors..God is keeping score of the credits and debits.
you have it all figured out.smart.keep at it and fight for all the poor loved ones suffering.been there and am going though again
Marcia, your situation sounds terrible and it must be extremely difficult to experience. Why don’t you move your mother to another nursing home or get her on hospice? Much or all of hospice fees may be covered by medicare. Hospice was terrific for my mother and we were pleased with the services and compassion they had.
Hi Marcia, on October 22 I posted TWO posts. Perhaps you didn’t read the first one I posted about my mother just before my post to Chloe. If you did read it then you weren’t paying attention because you are very angry about health care and I can certainly understand why. There are most definitely situations throughout the country like you have described. I’m not attacking what you say at all.
We live in Virginia and the nursing home is located in a small town where my husband’s family has resided for most all their lives. It’s a small nursing home, only about 60 beds. It’s probably the exception, not the rule. However, I have volunteered in larger nursing homes in various cities and states over the years and I personally know people who work in the health care profession. My own mother worked in nursing homes in various states and was an administrator of a private nursing home in Michigan for several years after my father passed away in 1985.
Please understand that unlike your experience, Marcia, not all nursing homes and health care professionals are wretched. There are caring staff at nursing homes and caring healthcare professionals as well. We all have to be careful not to make sweeping generalizations based on our own personal experiences. I am just as guilty as the next person to do that and I apologize to everyone on here who may have a loved one in a nursing home.
In any case, Marcia, I am in my 60′s now and my husband and I are married for 30 years. He’s an only son and also the only nephew on his mother’s side in a position to help his mother and father and her two sisters and an uncle. We went through a decade of failing relatives, there is light at the end of the tunnel. Not everyone has the financial means to care for loved ones at home. You do the very best you can, Marcia, with what you have to offer your loved ones.
Becky, I did not read your post,nor was did my comment reflect on any other posts. I was venting. Perhaps there are caring people in nursing homes,but the administrators are number crunchers.If the profits aren’t there,then staff gets cut,and it’s the aides that are reduced.Or the quality of care, or medications are reduced,or diapers are cheaper quality. People eat,get their diaper changed & go to bed.Get up,get diaper changed,eat,go back to bed. That’s it.No activities.If they are unruly(i.e.don’t like getting diaper changed) they get medication to subdue them..which just about kills them. This is New York and I’m sure that this problems exists all over the country.I have talked to people in other states that say there are good & bad nursing homes. The states are much too soft on the nursing homes. That’s why people languish in their “golden” years.Ever heard of CRIPA? That’s a federal law that protects people in public facilities,such as prisons. Those are strict rules.Imagine,an inmate having more protection that a frail 90 year old woman. Sad but true
My mother is 86 and in good physical health. I have an 83 year old father that is in worse physical health than my mother, but has his right mind and can still drive and get around-slow but can still manuver. Mother has demetia, which i believe has turned in to alhimerzer(sp?). She is on Aricept,Namenda and Cuminduan (blood thinner) and has been for years. She is usually good in the mornings and knows who we are and can talk somewhat intelligently, but she has the hardest time from 3:00 til bed time. She begs to go “home”., sometimes thinks she has kept the grandchildren who are now grown and she does not know who we are. She will ask “where’s daddy? Does he know i’m here? Is he coming to stay here tonight?” All the time Daddy is sitting right next to her on the couch. All these questions are asked several times from 3 to bedtime. My parents have been married 63 years and have always done EVERYTHING together. My dad never went anywhere without my MoM and now he is the one who is really having a difficult time with her problem. HE does not understand why she is fine – almost completely sane in the mornings and from 3 to bedtime- as he says she’s “Crazy”. They still live in the same house they have lived in for 60 years and my sister and myself go there daily-i get mama up in the morning, feed breakfast to both, give medicine and almost every day i dress mama. We do have someone to come in 2 times a week to stay and help with dressing and watching them from 9-2. My sister comes in afternoon and feeds them supper, medicine and get’s mama ready for bed. This is when she is experiencing the sundown syndrome. I ususally come over at 5:00 from work to see what is going on because we do not want my daddy to get frustrated with her as he most of the time does. We are trying to tell him to go along with her. for example, she’ll say, “where are the babies, i can find them.” I will then say, “Oh their mama came and carried them home a few minutes ago.” This usually satisfies her. Then she may ask, Does Daddy know i’m over here? ” I will say “yes he knows” She will say, “How do you know? ” I will then tell her that i talked with him and he said it was ok for her to be here and that he would be here soon. Again she is satisfied. BUT the problem is that if and when we are not there and she ask the off-the-wall questions, he tells her like it is. He does not pretend with her. He will tell her that there has not been any babies here at all. Some times he gets so agravated that he will finally say to her that she is crazy. In fact he says we are lying to her, which i do not consider myself lying. My parents are good christian people and my daddy does not want to do anything wrong. I am a christain also, but in cases like this i do not consider this a lie. I know she believes what she is saying and to keep her from getting upset and start crying, we need to go along with her. Now sometimes she will get her shoes on and say she is going home and we do have to handle that different. we just cant let her go outside alone. But then we think of something else like “stay here and daddy will be here for you soon.” ANY THING we can do to keep her happy. As most of you have heard the saying, “IF MAMA’S HAPPY THEN EVERYONES HAPPY”. that is more truer today in our life than ever before. Again as some of you are experiencing, i am having trouble believing this is actually happening to our lives. My mother has always be very active and a peoples person. She was the best cook in town and now does not even know how to boil water. She was always very concern about her clean house and dressed very well, Now she is not even aware about any of it. I know i’ve gone on and on, but i just stumbled on this site also and i guess i had to vent. My mom was the glue that held our family together and this is just so hard for our family. She has always begged not to be sent to a rest home and by the help and grace of God we are trying to do all we can not to send her. Of course we do not know what the future holds, but i pray that God in his mercy will take her home before we ever have to make that decision. Maybe that is selfish, but i know that is the way she would want it to be. For all of you who are going thru this nightmare, just take one minute at a time and learn to call out to God for his help–for He is the only one who can. He has been there with us and he will you too if you will just call on Him.
Sorry i’ve gone on and on.
to Diane: No, you are not selfish to wish God calls your loved one home before you have to make the nursing home decision. My husband promised his dad he would take care of his mom and never send her to a nursing home. He also has had medical power of attorney for his brother, who died without making his end of life wishes known. I promised my husband that when the time came I would quit my job (which didn’t pay well, but I loved it) and help him take care of his mom–I quit that job two years ago. I never believed she would rebound after each UTI or pneumonia case as she has. She is 95 and physically is doing great, but sundowners is settling in. Today she told me I was staying with her only because my husband loved me, but he didn’t want me to live with him! Cut to the quick again.
He says, don’t pay any attention to her, etc. but she, in her dementia, is my main social contact every day. I forget there is a sane world out there, and that this too will pass. I see myself existing in her world. I see that my health is affected, my husband’s too. So should I feel guilty that I want my life back? It’s Catch-22. If I do a good job caring for my mother-in-law, then I am bound by honor and love of my husband to continue doing it. It is a self-perpetuating prison.
Diane, you will think we all have freewill and that at any time we can change our situation, but our loved ones do not. They are truly without options. So even though I grump, complain, and lose my temper more often than I ever thought possible, I know I will continue caring for my husband’s mother. When I stop and think about it, I realize I have learned: 1. you can endure more than you think you can; 2. I never want my family to have to give up their lives to care for me; 3. don’t make promises that you may have difficulty keeping!
Diane, it sounds like to me you have the patience of Job. You dad too is doing the best he can–my husband can only take a few hours with his mom before he goes bananas. She doesn’t want me out of her sight, but I have taken to raking leaves A LOT. She can stand at the window and watch me, if she remembers to look out at me, and I can compose my thoughts and energy for the long evening hours. Hang on, you are doing great!
Has anyone ever considered that low sodium may be causing this symptom. Blood sodium level has a cicadian rhythm which starts to drop in the evening. Low blood sodium is known to cause psychotic symptoms. Many elderly are also told to reduce sodium consumption to avoid hypertension. The combination of a low diet of sodium and a circadian drop may be putting them at risk for hyponatremia. If blood pressure is not a problem, a dietary concentration of sodium equal to that of normal blood concentration might fix this problem.
My Mother and her husband have mutiple health problems and are now displaying the first signs of dementia. Mother is getting pretty hateful and won’t do everything her doctors tell her to do. Her husband gets Sundowners everytime he goes into the hospital. They still live at home, and my two younger sisters and I are trying our best to take care of them. Each of us live within a 25 mile radius of their house. Mother has gone down really fast and he is not too far behind. Heaven help us if Mother dies before her husband… Our Daddy died 20 years ago and Mom remarried about 15 years ago. The house is in Mother’s name, and has a provision in their will that Mr. B. can live there, until he dies or has to go into a nursing home. We can probably take care of Mother a little easier than we can him. Does anyone know how three middle-aged women can take care of a grouchy old fellow, who is not our father? I’m retired and have gone back to college. Our middle sister has her husband and daughter at home. Our youngest sister still has a full-time career, and will be taking care of her 11 year old grandson often next year, due to a serious medical proceedure he will have. I am going to check out our Area Counsel on Aging, to see what resources might be available for them and us. I hope the Counsel can give us some help. If I find some good advise, I’ll be happy to pass it on. We may be in the same shape as our loved ones, some day. None of us knows how we will be, before the Lord calls us up. We have to be prepared leagally and spiritualy. Good luck to each of you. 8~) Pat
my mother is 85 yrs old. and has dementia i have had problems with her lately in the evenings,staying awake all hours of the night and packing clothes gathering things getting dressed. and i have just started her on risperidone and i have found out that it works well for claming them down when there aggitated, but alsoif there really tired from lack of sleep it has a reverse reaction. they end up fighthing the sleep with makes it worse. now here it is morning and she’s not wanting to get up. she’s been awake all night.so it’s almost impossible to know what to do at this point.i’m opening for suggestions!
Does anyone know of medication that could help? I really want to help my mom, this is too much to handle and she is miserable!
I am the 24-7 caregiver for my 95 year old mother-in-law. I am sure there are those who will disagree with me, but after two years of seldom getting more than a few hours sleep each night, my husband decided that a time-release sleep aid, Ambien CR should be tried. It works great– she now sleeps 8 hours at night.Sometimes she is incontinent, but I use bed pads and Depends, so it is a small price to pay to get some rest, for both of us. Formerly she would be up at night, roaming, calling her son on the phone at 3 a.m. talking to her imaginary friends, yelling in nightmares, etc. Then she would want to sleep all day–finally we are now on a night-sleep schedule and her daily activities are much more productive since she is rested.
Side effects will no doubt vary, but she only complains of an occasional headache. Since she is on bp meds and lasix etc it is hard to tell what is going on. We tried various things, such as tylenol pm, and xanax previously and the best we could hope for was four hours of calm time.
Her insurance and medicare will not cover Ambien CR, and locally it runs about $175 for 30 pills. We gritted our teeth and paid it, and now we are trying to get authorization from the Dr. to allow the ins. to pay for it. Not easily done, lots of paperwork, and the DR. is already so busy.
Hope this helps. I try to remember that if I get sick or become unable to care for her, that we are really up the creek. Psychologically, I find I am much less stressed and more patient when I have gotten some sleep too–so, for us, Ambien CR works. Good luck.
My Grandma is 83 and she started with signs of dementia about a year ago. Her short term memory is not good, but it seems to worsen at night. She has been on nuemenda for 8 months and it really hasn’t improved at all this disease is really crazy and so inconsistant.
My mom is 86 and was recently diagnosed with a significant Urinary Tract Infection. She was put on a strong anti-biotic and within three days there was a remarkable improvement. She started sleeping through the night, was no longer agitated. She used to constantly try to take her clothes off anytime and anywhere and would not stay in bed at night. She never slept. She was constantly on the move and getting into anything she could get her hands on. All of that is gone. Praise God! We just take one day at a time.
Here’s an update about my Nov. 5 Ambien CR recommendation: after only three weeks of using it, it’s effectiveness has diminished from 8 to 4 or 5 hours or less. My mother-in-law (95) now goes to bed at 9 p.m. after taking the Ambien CR at 8:45. She is usually up again at 2 a.m. It is taking longer and longer to take effect. Initially within 15 minutes she was relaxing and getting drowsey. Now she can be still wide awake after an hour of taking the CR. So I am back at square one, and am getting up 3-4 times a night with her. We keep the safety rails up on both sides of her home hospital bed, but she bangs them with her arms until she is bruised. We have wrapped them with foam pipe insulation. Good and bad nights, live and learn. This sporadic bad sleep has been progressing for two years, and now I cannot get back to sleep after she wakes me up, and I dare not take any kind of sleep aid for fear of not hearing her when she wakes up. I see after googling “Ambien CR tolerance” this tolerance is a common reaction. Anyone had any experience with melatonin as a sleep aid for the elderly?
My mother is 79, and she tends to lose motor skills at night. What I find that worked was putting her on a bedtime schedule. 9:30pm is when I put her to bed, and she will sit up for about 10 minutes then fall asleep. She stays asleep until the health care worker gets her up the next day. This schedule also helps her with bowel movements (which usually occurs at night). Try to alter the schedules before you give your loved ones more medication.
My father just suffered a heart attack and they found a blockage in his main artery and fixed that. He is very strong physically and in great shape but now seems to be exhibiting signs of sundowners. I’m very concerned about this because they weren’t sure how long he had been without oxygen. He’s 72, will this condition be permanent? I’m hoping it isn’t.. I want my father back the way he was before.
Wow…can’t believe there’s so much sundowners and how it affects everyone. My mother 88, got sick in May (cryptococcal meningitis), the drugs they put her on shut her kidneys down and after 2 months she passed away. During this time, my father (90), fell and broke his hip, was in the hospital at the same time as mom (thank goodness they were in the same place, same time)…two weeks later after a very bad experience with a local rehab clinic, I brought them both home. Mom, I thought, would do better with being home and perhaps get stronger…wrong! Dad, did get better but dymensia has been playing a large role in his life….my husband and I moved out of our house and into my parents house to care for my dad and he is getting increasingly worse with keeping me up all night, talking, yelling at people, trying to get out of bed…I find myself up every 20 minutes making sure he’s ok…our doctor prescribed a sleep medication, which worked for about 2 weeks and now…it’s not working AT ALL…I try to talk to him about it when he is lucid during the day and of course, he says, “that can’t be, I’d remember it”…I’m interested in anything that will help dad to get a good nights rest…and me too! I am going to try leaving a light on in his room and perhaps the tv to see if that helps…because like so many of you have said…they sleep great during the day…so, what harm can it do? I’ll keep you posted.
I have a 76 year old father that i’m now taking care of.My Mother past away 12 years ago on my birthday, and there are five of us siblings. Dad had a triple bypass in Sept. of 2007 and was given a shot during surgery that caused him to have a stroke and renal failure. Dad had a complete hip replacement done in 2008 due to a fall. Since the hip replacement the most he has walked was 10 steps with the walker during his therapist. Now he is transcare transport and bound to bed or the wheel chair. He talks about wanting to die all the time, but I just tell him that when the man upstairs is ready then he will take him home. My so called baby sister was p.o.a. and really done dad in. Her and her family moved in with dad to supposingly take care of him. She was in it for the money and what ever she could get.
Her and my brother told dad that they would be there til the end and neither one are there. Dad had a home nurse that would see him once a week at his home. My sister would tell me to let the nurse know he was verbally mean to her and threatened her and the nurse said it was sundowners. I have never experienced any of this and I was there until 3:p.m. or 3:15 at the latest. It really seamed to happen after I was gone. She moved out on October 15, 2009 and I became his power of attorney. It was really hard to take care of two houses, and I had no choice but to move dad in with me and my family after my brother said he was done. Dad has dialysis three times a week so I told dad that he had to move in with me. When Transcare came to pick him up on Saturday I told them directions and that they were going to drop him off had my house and pick him up there from now on.
Since October 17,2009 I have not seen any signs of sundowners or even one cross word from him. When she was taking care of him, dad was seeing people that were not there and still to this day he remembers this. I’ve asked him if he has seen any body and he’s states only the people that lives here. Dad wouldn’t eat her cooking because he stated that he would taste metal and that she couldn’t cook. But since he’s been here he (dad) eats what ever he wants including my cooking.
Good luck to you all on any info on sundowners.
You may contact me at v.ridner@fuse.net
My mom just turned 87. Lived on her own and drove up to a year ago. We sold her house and put her in a beautiful senior apt. where the city senior center was. she hated it, cried everyday, wanted her house back,never liked it, stayed at either my house, or my sister. Got rid of the apt. (diagnosed with vascular dementia) and lived alternating with us onver the past year. We could not leave her alone, would panic and try to call us 9forgeting how to dial) would leave the house, go to a neighbors and ask them to dial us. So sad that THE BEST Mom, helped us with our kids, now 16,13 & 9 and 6, since the day they were born.
Just moved her to an assisted living, thinking it would be better,,,people her own age, (since loud noises bother her. when we close a door she yells “ouch” or any other noise.)
but hard since she doesnt really like “old people”! My sister and I both hairdressers, did her hair and makeup everyday. Now she is having sundowners at her new place. I have had her her at least once a week spend the nite in the past month since she has been there. Last nite my brother got a call, she wanted out! shes told me its dangerous–(had this happen in a hospital last year too)My brother tried to calm her done, tell her its all fine etc. I want to bring her overnite this evening for New Years Eve. brother and sister not so sure i should..might disorient her more and have to get reacclamted to her place? Hate to to be with her for a holiday. Life is so short and precious. Nothing good about getting old. Very sad to see our wonderful,loving parents go through this. I am so sad to see her scared.Mom,we love you! I am soorry this has to happen to you.
My mom is 72 years old. I noticed at Christmas she seemed a little more confused and discussed it with my dad. On December 31, 2009 he took her to a local hospital as she was very weak and talking incoherently. The local hospital transferred her to a bigger hospital where she was admitted. She had an UTI which was treated but they also felt that she has Encephalopy due to a viral infection in the brain. (This appears to be a generic term for a brain disease). However, all of the tests results are coming negative. They are giving her acyclovir for viral infection and antibiotics for the UTI. The MRI and CT scans have shown no stroke and normal dementia for her age. She is currently very confused. Sometimes she seems coherent and other times she has no idea where she is. At night in the hospital she is showing signs of Sunddowners. She has been in other patients rooms and has tried to get on the elevator to leave. Most recently she fell in her room and may have broken her wrist. They have put her on Risperadol and Trazadone to try to get her to sleep at night. This has not worked. She has been denied rehab due to her behaviors and confustion. The doctor’s cannot tell me what has caused this and if she will ever get better. Please give me some guidance. Should I take her somewhere else for a second opinion? My dad is 75 but very healthy and this is killing him. They have been married 53 years and sometimes she says very mean and hateful things to him. She should be released from the hospital this week. What are my options?
If your dad feels he can no longer take care of her, that is all you have to tell the hospital and a social worker will come in and make a plan for her care. If you refuse to take her home, as you have not got appropriete care in place, they can not throw her out the door. Ask for a social worker, ask for an alzheimers evaluation by senior services, they have a like score card thing, they can tell what she will need and might have answers for you. Your dad will not be able to take care of her alone, please set up a team, to help with her. I did some work with the alliance for the mentally ill, they too might have some answers in your area. Each state has different laws and services availible. The hospital will have a team meeting before she is to be released , ask the hospital to enclude a family member on the team. That way you know what the plan is and can be part of it. Let them no if you dont have the safety tools to deal with your mom’s wondering. Dementia and alzheimers can be dangerous, if you don’ t have the safety area’s set up. I have a baby monitoring system set up in my mother in laws bedroom , so i can view her on the t.v. I can leave it on all night in my room, so i can see and hear her. Many times in older couples it is the caregiver who dies first, because of the stress of caring for the sick one. Please give you dad the help he will need. Ask the social worker in the hospital, what services she qualifies for now, also , ask hospice to come give and evaluation, they have services not just for the imediate passing stage, and are very well trained in demintia ( i dont spell great). good luck and God bless. lynda
Hi Kandy
I was wondering if you have any more information on your mom. My grandmother is showing the same signs. But I believe her symptoms are worse. She is throwing things, hitting people, being really rude, and refuses to listen to anyone. She fell and broke her hip last week, had surgey this week and was doing really well. They transferred her to a rehab hospital and only a few hours later they transported her back to the hospital because she was insisting that the doctor told her she could go home. When back at the hospital they run some test, and found she has a UTI. But they could not find any signs of a stroke. Since back at the hospital like I said is acting like a child. The doctors and nurses are not doing anything. They are not checking her vitals, and have told us (the family) that someone has to stay at the hospital with her. Please if you have any new information I would greatly appreciate it.
THank you
Marie
Hi,
My advice is to call a homehealthcare service in the city where you live, They have wonderful trained people to help with the care of your mom And she can stay home !
Which is what i do for a living…..Also i’d advise you to take mom to a neurologist. that
is the plan this week for the 93 yr old woman that i’m currently taking care of. They are
best in finding answers about Dementia, sundowners etc…The lady i stay with 24/7 has been diagnosed with sundowners and will be tested for dementia soon her signs are more and more intense ! You may need a team of help.
lack of understanding made it difficult for my siblings and I to accept the evidence that has been in front of us. My father has been living alone at 80. He has shown signs of forgetfullnes (not extreme very slight) but he becomes fixated with the furnace in the winter. He will not let it rest he writes down when it goes on/off length of time running and calls fire department, gas company, furnace repair and family mostly in the evening 2A.M or later. he is up all night walking around checking on things always using flashlights (sundowners???) We were trying to get him to agree to assisted living care with little to no success. I finally had to take him to the hospital for an unrelated incident and his mental state has gone downhill rapidly like in 24 – 36 hours. Prior to this the only meds he has taken is lisinopril 40mg. Doctor as him on an anti depresant now, yet he now seems more depressed. Thinking we would have been better off keeping him home in familiar surrounding and trying to take care of him there. In my heart I think that would be best for him but my head is telling me otherwise. I feel like we are losing him (mentally) very quickly and don’t know how to help him.
My Dad was getting his days and nights confused, sometimes calling me in the middle of the night wonderig where I was and why wasn’t I there to pick him up? He once took a cab to Walmart at 2.00 am and another time took a cab to his doctor’s appointment sometime in the middle of the night. The fact that it was dark outside did not seem to make any bells go off. He got angry that the store or the doctor’s office was closed. Later, after he’d gone into extended care we found out he was always up all night wandering around (the neighbour told us he could see him in there with all the lights blazing). He painted everything in his basement (tools etc) wierd colours etc with any paint he could find. But for most of that time when we took him to see the family doctor he would pass the mini-mental health test.
to Kevin–we also felt it was the best thing to kepp my 95-year old mother-in-law at home, and we did since her husbaqnd died in 2000. For the first five years, we got along OK. This last year has been a real trial and none of us get a respite form the strain of (1) her not knowing where she is;
(2)her not remembering where the toilet is; (3) being able to respond to simple requests, such as “take out your teeth”. Still, as I look back over the last ten years, she had five very good years with us, four years in decline, and 2009 saw many UTI’s, bouts with pneumonia, and dehydration, and the dark cloud of sundowners every day at 4p.m. She seems very unhappy now all day and family relationships are deteriorating, and for the first time I can see why people put their loved ones in nursing homes. “She doesn’t know where she is anyway” we tell ourselves. So perhaps this is the beginning of the last stage of at-home family care–don’t really know since this is the first time we are experiencing it. It’s hardest on my husband, who can see the sharp decline, and he feels helpless. I finally today gave up for the millionth time trying to explain, “This is where you live, you don’t have to go anywhere, your brothers and sisters are all gone except for one who is ill.” I cannot pull her back to reality. She has gone where all old frail minds go–where we ALL will go probably. So, even though I sense you are feeling guilty about your dad–don’t. He’s in his own world regardless, and we cannot join him. We can just observe and see that our loved ones are really already gone. How else could we bear to part with them? Good luck to you. (Sorry I couldn’t proof the previous note–hit the wrong button!)
Kevin, I feel like you do that it is best to keep them in familiar surrounding if at all possible. Did the hospital rule out other possibilities that interfered with his mental status deterioration such as infections, med side effects,thyroid problems, etc?
Please everyone, be careful of what psychotropic-mood altering medications and others that get prescribed for your elderly loved ones. Many can cause increased behaviors, falls and other side effects.
Just giving diuretics ( water pill) for congestive heart failure can cause electrolyte imbalances that send people into symptoms of dementia.
My Mom is 92 and until recently had been living alone in her home with some home health services. On Thanksgiving she was very lethargic and had cellulitis in her leg. She has been hospitalized 4 times since then with a series of increased confusion episodes due to the infection process, low hemoglobin and low sodium and low potassium. Any of these can mimic dementia. She also has symptoms that are similar to Sundowner syndrome, but it occurs at various times of the day intermittently so that is not likely consistent with Sundowner, though maybe.
Soon after the electrolytes ( potassium and sodium ) were stabilized she had no Sundowner symptoms for many days, until her potassium went low again due to use of water pill and no potassium replacment prescribed. What is interesting is she voices her episodes of “confusion”,saying she just wants the confusion to go away. She will tell us , I am slipping out again.
Please advocate for your elderly…..
One of the ER docs wanted to place a urinary catheter in her at one of her admissions.
She is normally totally continent! A catheter is the worst source of bladder infections which can also cause dementia symptoms. Needless to say I said no to the catheter and she remains continent and is toileted with assist during her hospitalizations.
Each of the elderly needs a strong advocate and I feel sorry for the ones who have no one looking out for them, as they likely get lost in the long term care or hospital systems.
Thanks for listening. It is a roller coaster. Sandi
I work 7pm to 7am at an Assisted Living Facility in Md. We have several residents that suffer from sundowners. We have one that is extremely violent, not towards herself, but to us. She will destroy her room then scream that we were in there stealing her things and look what we did. She has gone as far as to baricade her room with chairs and her desk to keep us out, which means we can not do bed checks or rounds every hour. She slaps, kicks and punches anyone who walks by her, and has hit one of the girls over the head with a glassed picture. She refuses to take any medication that is prescribed for her. We are always polite and talk to her calmly and clearly at all times. All i’ve been told by my bosses is that i had classes to be able to deal with this. I tell them, come in and work my shift one night, then tell me the best way to deal. Of course we all know, that will never happen!
sandy, i dont know what will work but you can try many things.. Say, I am here to help you, your family sent me, what do you need me to do? How can i help you, if you get scared you call for me, i will help you..
Maybe it will help maybe not, sometimes i have to play the game, see what works. I took granny out for a walk in the hall, we walked till she was so tired, then i got her back in the front room and said, wow, it’s good to be home isn’t it? she said yes.. also,,, she is not on the best meds, she doesn’t feel good inside , that is what you have to remember, if she looks like this on the outside, how bad must she feel on the inside. If she has family, they need to review her meds, and if you see a doctor, tell him how bad she seems to feel. You are her only voice, go to a doctor. You will be good at your job, because you cared enough to look this up…. I can tell God has his eyes on you…. be her voice..
My father has been diagnosed with Multiple Myeloma (Bone Morrow Cancer) with this comes confusion and exhaustion. He had a confused episode that lasted more than 30 minutes, but most of the time he is lucid, just can’t remember small things. Great memories of the past, but not current things. A nuerologist stated he had “a sundowners episode” Is this the beginning of Alzheimers and is it worth fighting this Cancer. He is 77 years old. Other symptoms….Can’t sleep, no energy, no appetite, loss of weight, depression, constipation, weak bones, (now on top of all this, daughter has MS, and Sister/Law has breast cancer) I need some answers
John or anybody else out there. Where can I find that a Coreg side effect is dementia? I do not see it listed on
the manufacturer’s website as John said in his post.
Elaine
Light is a friend to someone who suffers sundowners. Music is another friend. Be patient. Try and get sleep and God Bless us all. This is a battle no child should have to go through
My mother also is suffering from Sundown Syndrome. She is 87 and recently broke her hip. She is in a nursing home for rehab, which isn’t going well. At the nursing home her agitation starts around 7:00. Mom is given a sleeping pill. By 1 AM she is up, agitated and really angry. The nurses, who are great, put her in a chair and keep her by the nurses station where she dozes off and on till 7AM. She then goes back to bed, but is so exhausted she sleeps off and on all day. Too exhausted for physical therapy. Tomorrow I am bringing a clock radio that plays soothing sounds and has a light that gets dimmer as the hour goes on. I will let everyone know if this works.
Nancy
An update on Mom.
For 2 months Mom slowly went down hill. Se got pneumonia late March and passed away last Friday. She spent the last 2 weeks resting comfortable and sleeping 20 hours a day. Hospice was a Godsend, and helped us all to understand the process that my Mother went through. Everything shutting down little by little. She felt no pain, and even knew we were in the room as her eyes would not open but when I told her I love you her eyebrows would arch a little. No answers for sundowners. But the nurses said the clock radio with soothing sounds calmed her and her room mate for a time.
Patience, love , understand and more patience. When you can not take care of your loved ones needs at home anymore, find a skilled facility. Make daily visits at different times. Insist your loved one is treated with dignity till the very end. Make friends with the nurses and therapist. (Bring them cookies). Best of luck to all. Mom is finally at peace.
God Bless
Nancy
Taking care of someone who has sundowner’s or any form of dementia is a thankless job, because you usually don’t see that you are making any progress. You do the best you can to follow common sense and the doctor’s orders, but there is always the obstacle of what is going on in your loved one’s mind which prevents your care from reaching them. For example, my mother-in-law thinks the cannula from her oxygen is choking her if it touches her neck. We put it on her from behind and over the ears so that it nowhere touches her neck. She will not be convinced, and she will not leave it on. We also know from her experience in the hospital she will not wear an over-the-face oxygen mask.
So she is fighting to take off the very thing that will help her feel less short of breath–which she frequently complains of. It is difficult for me, the caregiver, to not feel a sense of frustration and anxiety that I cannot reach her, and I don’t know how to accept that in some instances THERE IS NOTHING I CAN DO to fix this. She will not, CANNOT, listen to reason, medical explanations, or even pleadings (“This is something you can do to help your own health–you are lucky there IS SOMETHING you can do to help yourself,” etc., etc.,)
Tomorrow morning she will not remember anything that happens tonight. She will feel tired and her congestive heart failure drags her overall condition down. So here it is 3 a.m. and I am all revved up from arguing with her, and her sleep aid has kicked in and she is finally sleeping–but I know the oxygen will not stay on, as soon as she can take it off, she will. She will also take off her Depends if she can, and pour her drinking water in the trash and then tell me she drank it. What I constantly pray for is the serenity to accept the things I cannot change–the loss of her mind–and the wisdom to know WHEN I cannot change the situation.
My sister-in-law says a refusal to do something, like drinking enough liquids, is my mother-in-law’s way of shutting down (she is 95), that she and her body are more accepting of her death than I am. And (this is the hard part)that I should just let her go. She says I should accept that this is not in my hands any longer; but I continue to fight it, and write on this website, and ultimately feel a little better that I can express my sense of hopelessness in this anonymous forum. Whoever you are reading this, if you waded through it this far, thanks for reading. Pray for all us caregivers who sometimes feel we would rather jump off a cliff than do this another day–yet we do it another day…
Brenda
My heart goes out to you, as I understand what you are going through. I came across this forum tonight as I lay awake praying my grandmother would go back to sleep. Her dementia has been coming on midly for a few years and in the past three weeks has went to severe and sundowners has kicked in to boot. I believe this is the hardest situation most of us will ever deal with. I believe we each have to give the care we deam best and in the end know that we each did everything we could do for our loved one. Thank ypu for sharing your post as it has let me know I am not alone this late night/early moring. I too often repeat the serenty (sp) as I lay awake praying for an hour of sleep before its time to get up and go to work.
Wow, your story is very touching. I totally feel for you. You have explained everything so expressively. I am definitely going to pray for you and all caregivers. It’s killing me that I’m losing my mom this way too. I think my mom is at the beginning stages of this “sundowners”. My mom had a stroke 9 years ago which killed her kidneys and has been on dialysis for eight years. She just started doing some weird things in the last two weeks. The waking up at night is definitely one of them. She wants to take a shower and get ready even though it’s 1:30 in the morning. She also seems to do physical things that normally she cannot do. She walked outside (opened a heavy sliding glass door and walked out to the back yard and fell down. We were looking for her all over the house and couldn’t find her and finally went out to the back yard and saw her sitting on the grass asking for someone to help her. I just couldn’t believe it! All I kept saying was how did she get out there?
mona
i just found out tonite my 68 yr old mother has sundowners….onset of dementia due to poor dialysis. She gets off early most times.
i am devastated. i work in a retirement community and have seen up close and personal the effects this disease has on any of our seniors.
im so sick about it….we have been tryin so hard ot get h er back to where she used to be….MOM….i fear that she is gone…and i dont know how to handle it…sigh…
My mom is able to go to an adult day care (thank God for this relief) and I go visit her at lunch, but I’m finding out more and more lots of things go on with dialysis. My mom has been saying lately that she’ll just stay over night at dialysis because she will be safer because my brother hasn’t been coming to help her during the night (she lives with my brother and he has her on a baby monitor at night so she’s not out and about getting up and causing danger to herself). Some nights are good where she sleeps all night, others not so good and she’s calling for him every 5 minutes. My brother has a one year old baby and he’s exhausted with both of them.
It’s interesting what you say about dementia and the dialysis. I’ve been reading alot of these stories here on this website and it’s just amazing how many people are taking care of their parents or grandparents. What I’ve done lately when my mom starts talking “crazy” I go along with whatever she says and try and keep her satisfied with the answer she wants to hear. At first, I was getting frustrated and fighting with her about these games I thought she was playing with me, now I know it’s not her fault and she doesn’t know what’s going on with her mind. I am just thankful for the good days and cherish when she is sharp on those days and we walk and talk and are happy together. I love her.
OMG Brenda, I’m just beginning to walk your walk. Thanks for the insight and the validation that I’m not insane. I hope I’m an able caregiver and patient advocate. This came on more suddenly and intensely than I’d ever imagined. Prayers?–of course!!
I came on this site tonight because my 87 year mother has been showing signs of sundowners. She had a compression fracture in her back a month ago and it has been a nightmare since. She was diagnosed with Alz… last year and was in the hospital for about nine days….she threw fits and pulled her ivs out and took the alarm off of her. she got up in the middle of the night and yelled at the nurses to shut up that was talking in the hallway. I could not believe she had it then…. until then she had stayed in her home and maintained all of her household chores and even did her own yardwork…she stayed in the nursing home for twenty days and they dismissed her and made her promise she would continue taking her medication and let her go home with home health care. she stopped taking her meds one month later. i reported to her nurse that she had stopped them. she went to see her and called me back and said there was nothing we could do if she refused to take them.
now to current date….. we took her to the hospital because of the excruciating back pain she was having. To make a long story short she was so horrible while we waited for five days(she had been taking aspirin to thin her blood) to let the blood thicken back up before she could have surgery. My brother stayed with her from eight in the am until two pm…..I stayed from two pm until eight pm. We are both in our sixtys and get very tired so we could not stay all night…she gave the nurses so much trouble after we left ..she pulled her ivs out four times ….she slapped them and
crawled out of the bed all of the time. she was not supposed to get out of bed until she had the surgery. … she had the surgery finally and it was sucessful…. she has been on a merry go round of moods since she was in the hospital. the nursing home has said sh e has the sundowners and gets so bad at night….she doesn’t remember being in the hospital and she doesn’t remember having surgery. Her twenty days is going to be up this tuesday with medicare and she is saying she wants to go home. i dont know what to say to her but i know i cnat bring her here to care for her in my home, and i cant let here go back to hers….it is tearing my heart out. She has never been a very nice person and looks as if she is going to get worse….I just needed to express myself tonight… it is such a difficult place and time in our lives
Not giving up and remembering to be humble is my everyday prayer. My dad is suffering from depression which began a year ago after having double bypass surgery. I finally had to have him admitted at a phychiatric hospital. So far no response, he just wants to lay in the bed, and complain about not sleeping.He is not interested in anything. Now it seems that he has some form of dementia and sundowners. I have heard that the depression after a double bypass is more common than not. My mother died 10 years ago and so dad is all alone. I try to do for him like she would if she could. My sister thinks that we just may have to face reality and put him a nursing home. I am hoping the doctors will not give up on him. He is only 72 and is surely to young to be admitted to nursing care permanently. I am not sure that I agree about the dementia or sundowners, but I do know that he does not have any quality of life with this depression. He doesn’t want to participate in traditional therapy and therefore we continue to try different medications to bring him out of his depression.
Reading many of these articles made me realize just how many elderly people and caregivers are affected by these diseases or symptoms. Please just know that you are not alone and my best advice is to take one day at a time. I am still hoping for a miracle and something will finally work on my dad. I have been frustrated and disheartened more than I can count. I know that I have to deal with it whatever happens and that’s a fact. So I need to just suck it up and be the grownup and take care of my dad.
Just want everyone to know that your not alone. God is always watching and has a purpose for our lives, including our loved ones. Love, hope, and faith are words to live by.
Thank you Brenda for your post. I’m sure you are doing a good job. So, hang in there. I can identify with what you are going through.
I’m writing this at 1:45 AM as I watch over my father in his hospital room.
My father is 77 years old and has myelodysplastic syndrome (bone marrow is not properly producing blood cells) and he also has failed kidneys (ESRD). He has been on dialysis for a total of 2 weeks so far.
He appears to be afflicted with a combination of “dialysis dementia” as well as sundowners syndrome. All of this is due to his body trying to adapt to dialysis. I believe that is the correlation because it all started the very first night he had dialysis.
So, he is tormented and unstable at night. Then, he tries to sleep during the day and is grouchy towards family, nurses, and physical therapists who try to help him in the daytime. I’m trying my best to help him reset his internal clock with respect to daytime/night by getting him more exposure to sunlight during the day.
This is approximately my father’s 4th week in the hospital. So, the nurses said he might also be suffering from a bit of “hospital psychosis” from being in a room/bed for so much time.
He also has nearly zero appetite. This is so concerning to me because I don’t know how his body/brain will be able to adapt and possibly rejuvenate at all if he has so little nutrition.
I wish I could stay up with my father everyday and watch him. But, the reality is that I have trouble working during the day when I stay up with him at night.
I’ll stick with it as much as possible, even if I can only stay awake until midnight some days, because I love him and I know he would have done the same for me.
Everyone out there who is in a similar situation, my thoughts and prayers go out to you and your loved one.
Best Regards,
James
My 85 year old mother had an aortic valve replacement and double bi-pass Friday, Jan. 29, 2009. It was horrific surgery and I’m wondering what we were thinking allowing her to got through this. She did not begin to wake up until Monday. With slurred speech, they said she had a stroke but later decided she didn’t. Today, Sat., Feb. 6 she is now in acute rehab. She seems to be talking better but now is not making sense. The nurse suggested ‘sundowners’…Tonight she was angry and made nasty comments to the nurse. She thought I was her sister and they told me after I left last night she tried to get out of her bed and hurt herself. My mother was mentally healthy until this surgery. Has anyone seen this? Based on what I’ve read, could this be a vit. d deficiency?? Please excuse the misspelled words…my spellcheck doesn’t work?? God bless each of you.
Kathy, my dad went in for lower back surgery in fall 2008, and came out of the hospital having had a stroke due to the coagulating agents or whatever. He was in rehab a couple weeks and that is when the sundowners kicked in. He did the same thing your mom did, being nasty, aggressive, taking off his clothes, trying to leave, threatening, losing touch with reality. As you have read from all the other comments, we are not alone. Now that my dad’s Parkinson’s is progressing more rapidly, his dementia is too, so lately the sundowner’s has been back with a vengeance, even though he’s living in his own home with a full time caregiver. He’s impossible for one person to deal with, so now we need to get him placed into a home asap. Only God can handle stuff like this for us, as we are way beyond equipped to do this alone. Good luck everyone.
Hi Kathy.
I will start off by saying that I am not a clinician and am not giving any advice with the following comment. I’m just sharing my thoughts from reading your post.
It seems too soon for your mother to be suffering from sundowners syndrome. From what I’ve heard and read, it usually kicks in after an extended number of days in the hospital.
Secondly, when my father had bypass surgery several years ago, he too wasn’t quite right mentally for awhile. But, it appeared to be from the fact that his body was trying to recover from the very aggressive surgery he had just been subjected to.
Major surgery, reduced nutrition, and reduced sleep all in conjunction with increased medications can easily cause confusion and irritability in even a young person. So, an older patient would be even more succeptible.
Regards,
James
Hello Kathy, I’m also Kathy so I am just signing with “K.” so that people know the difference…
Early December 2009, my 91 y.o. dad had pneumonia and was admitted to the hospital.
Previous to that he was having some episodes of dementia. He would do odd things, started swearing a lot when people aren’t around which he never really did before, complained a lot that “something’s not right, I don’t feel well” but was unable to tell anyone what was wrong. We would note all his vitals, check his pulse, respiration, temperature and he would all be in normal range so we wouldn’t call the ambulance but noted that there may still be something wrong, but not enough to call an ambulance. He also had a slow growing prostrate cancer and had been diagnosed with severe osteoporosis.
This was going on for a couple of months before he collapsed and was picked up by ambulance to go to Emergency. He was diagnosed with emphysema and pulmonary hypertension while in ER, and had a sudden loss of blood pressure which precipitated him being put into Critical Care.
The hospital building had been opened for only two weeks and was built right next to the old hospital facility.
The first two nights in the Critical Care unit, he wasn’t showing that much abberrant behaviour from before, but would be up all night playing on an electronic poker game. As he improved he was sent to a brand new Telemetry wing. The rest of the week was literally a nightmare for the family. Dad flipped out, would be verbally abusive and agitated all night. He was moved out of a private room, to another private room closer to the nurse station, and finally to a shared room with a 24/7 attendent to ensure that he was monitored 100% of the time because of his behaviour. He was put into restraints twice, and his arms got ripped to shreds because of his old skin texture and by an attendant getting a little too agressive in trying to keep him in his bed. My brother in law who lives with my sis and my parents was flipping out and wanting to put him in a nursing home right away.
It was interesting to note from previous posts about the connection with military service and post traumatic stress syndrome. The nurses would tell us that he was reliving a lot of WWII during the times he was in restraints.
The doctors told us about the Sundowners syndrome and assured us that he would be back to normal once he’s back home (for whatever’s that’s worth!) Sure enough, when he got back home he did get better and we’ve all been pitching in to relieve my sister and brother in law and trying to keep dad at home. At this time, nursing home would probably be the last thing that he will be able to handle which was confirmed by the social worker.
He’s on risperidone (his “funny” pill), Advair and Combivent for his emphysema, Flomax (I believe for his prostrate) as well as Fosomax and Testosterone shot for his osteoporosis. We did notice an improvement in his behaviour/mood with the risperidone, but that still hasn’t made him sleep normal hours. My mom ended up sleeping in the study which is the room that my dad would go too during his night rambles which started really to disturb my brother in laws sleep. This stopped my dad from going in that room, so we got rid of their king bed and got twin beds and put the computer into their bedroom so he stays up all night and stares at the bridge game on the screen.
So things are simmering down now, and we are looking into a day program for him. He will be in pulmonary therapy soon too so hopefully all the day time activities whill suppress his night activities…..
K.
My mother was recently told she has sundowner syndrome, This morning around 3:00 am she woke up scared that something bad was going to happen to her and she wanted me to call my brother, and sister’s and take her to the hospital. I’m not sure when this first started but I’m worried about her , she fears that she is going to die and now she wont go to sleep. If someone out there is going to the same thing please tell be what I can do to help her. Thank you to anyone who responds. God bless
We were without electric for ten days here, and sundowners took over. After five days we sent my mother-in-law to a hospice respite facility that is supposed to give caregivers a break. When I picked her up today after the electric came back on at 4 am last morning, she didn’t know me, did not know she was going home, didn’t want me out of her sight, woke me up this a m with “help me! help me”–but nothing was wrong. This is how her fearfulness is manifesting itself, and this is new for us. She has almost no cognitive perception beyond what is happening in her mind. She cannot help herself, and I see the five respite days apparently made her worse–since we were snowbound we really didn’t get a break either. So one more option that I thought was a Godsend didn’t pan out. I see she wouldn’t survive a month in a nursing home, and that keeping her here at home is the only humane thing to do. But I honestly hate it, and whatever love I once felt for my mother-in-law is gone. I feel trapped, as she is trapped. I feel guilty that I lose my temper, and she doesn’t hold it against me the next day–because she cannot remember the hurtful things she says to me, and then I let loose with a few choice words myself. It does not relieve the stress though. Now, you’re thinking, reader, “this lady is going nuts” and you would be right. What IS the purpose of all this madness? I have been her primary caregiver for YEARS and I have had it. I have prayed and cursed and loathed her and myself and the next day…it all repeats itself. What is the goal??? I have lost sight of it. I can no longer see any good I am doing. My husband is not much help–it’s all too painful to see how his mom is gone and he now has to witness my misery too. I know I’m being selfish, but tonight I just don’t care! If it weren’t for this website I would just get in my car and drive and never look back.
Dear Brenda,
My mother is 94 and I have been careing for her for 19 mos. The problem we all have is the way our towns and cities are organized with us not knowing(or not wanting to know!) who the hell our neighbors are and all of our friends are spread out all over creation. So, many of us are doing this job with little or no help. You are lucky your husband is at least around, sometimes. I think most of us understand that we are trying to preserve our humanity as we do this hardest of all jobs. The temptation is to feel sorry for ourselves in the sense that no one “really” understands what we are going through. Well, no one really understands anything we do and what it may cost us in the long run. Raising kids, caregiving, it is all the same. Beware any husband or career woman who slights the efforts of the stay at home spouse. “Worship me, I’m the one bringing home the bacon!” A person could get hurt if a person were careless in that way.
I have started to think of myself as already dead, like a soldier in war. That way survival comes as a bit of a surprise, like UPS showing up with an unexpected but delightful parcel from a secret admirer, or something like that. I think it is especially important for women to get together and talk about their lives and problems. If you are a woman who has not had a group of friends over the years I suggest you start now if at all possible, even if it is only on the telephone .Ladies from some churches are very good at giving this kind of support without placing you under any obligation.
You ask what is the purpose of it all. What is the purpose of life itself? Probably nothing more than to reproduce. And to stay human doing it. I sure do understand that you have been walking a thin line but the point is that you are succeeding! And you are learning just how thin that line is that separates us from…well, you understand, I feel certain.
Actually, I do get in the car and race up and down the freeway at night sometimes, just to smell the night air and feel a little bit free. So what if the house is on fire when I get back! You can’t have everything!
Resisting the situation I am in is what causes the most anguish. Accepting it without reservations is best. I don’t-have-to-do-it-if-I-don’t-want-to is the truth of the matter. Being controlled by the person being cared for is beside the point. I DO WHAT I CAN AND WANT TO DO AND THAT IS THAT.
Brenda – I know what you mean about wanting to just get in your car and drive away and not look back. My 90 mom was diagnosed with Alzheimers about 3 years ago and I am her primary caregiver. She was hospitalized last week with extreme weakness and they think she had a mini-stroke. This would be her second stroke. Last night in the hospital she had a bout of sundowners. Wanting to pull out tubes, and go home – she told me we both could climb out the window and get out that way. The doctor told the nurses to give her Ativan to calm her down and it took two hours for her to get calm. In the meantime, the only way I could keep her in bed was to crawl into bed with her and put my legs on top of hers so she couldn’t move around. This latest hospitalization and bout with sundowners is on top of all of the other all consuming things involved with her care. She has diabetes which is difficult to control, stents in her heart, high chloesterol, takes about 17 pills per day and I’m pretty exhausted – I’m not sure how much longer I am going to be able to go on.
READING ALL THE INFO FROM YOU GUYS HELP SHED THE LIGHT on my 74 yo husband who will be find all day, but around 4 pm his mind tell him to get into his car and drive, sees people that are not in the house, and forget who I am. He been diagnosed with dementia for 2.5 years, taking aricept and zoloft. Also klonopin for restless sleep and night terror. I am grateful that so far he sleeps well thru the night. Brenda I am so sorry that you are having to go thru this and don’t seem like any relief in sight. I pray God will give you more strenght and endurance. Be sure to take care of you, too. Hang in there! It makes me realize what may happen to our life in years to come. God Bless.
my 82 year old dad had his first episode of “sundowners” lastnight. He is terminally ill with cancer and lives with me(daughter) and my 9 year old daughter.
It was very strange, he had a bad day where his best friend for like 50 years had visited and he couldn’t seem to hold a conversation with him. He says that he stumbled over his words alot and felt terrible about it.
At about 8:30 p.m. he started asking really jumbled questions that didn’t make any sense. He was very persistent in asking things that I didn’t know how to answer because he was really confusing me.( His Dr.told me at our last visit about a month ago that she suspected he had an early form of dementia)
Finally I called the hospice nurse because he got paranoid that I was giving him the wrong medication and acted like I was tricking him into something.
they had me give him 0.25 mg of haldol, a very small dose. He slept all through the night for 12 hours and woke up fine today and had no symptoms tonight.
Wow was I relieved. I know that it will come back though….
this medication when given in very small doses can be beneficial to patients and does not have the same side effects as benzodiazepines like xanax and ativan. Those meds just make things worse with my experience.
Good luck to all.
Thanks for your kind words, Barbara. After much gut-wrenching thought, we have decided to put my 95 yo mother-in-law in a nursing home for a while. We hope we are doing the right thing, but we can no longer give her happiness or contentment here. She is as someone leaving a sunlit field and entering a dark woods of fearful sounds, like a baby constantly crying for help, she goes into sundowners at 2 in the afternoon, “I’d better get ready before dark.” She, even in her confusion, knows what is coming, and sees strangers in her house, calls to us for help, and wonders why no one will take her to safety? Why won’t we help her, she wonders?
We have only initiated the paperwork, and still have days ahead of guilt. Our hospice counselor gave me a comforting perspective on the situation I had never considered: after five days of hospice trying to give respite care for my mother-in-law, they were drained. The counselor said, “We are a full staff of professionally-trained medical workers. You and your husband have been doing this for YEARS, and you have only just now gotten tired. We only did it five days!” She told us we have been doing a great job of caring for her, and that the decision to try a nursing home does not mean we are putting her in prison, only that we are handing the bulk of her care over to professionals. So wish her luck in this new phase of her life. We bottomed out last week, and pray she will have some kind of peace and security, which is all we ever wanted to give her. All of you out there who are every day watching your loved one enter the dark woods and know too well you cannot go in there with them, have courage.
Be strong when you can, forgive yourself when you can’t, and let go when you must.
Brenda,
I’m a newbie to this site and have been fascinated for the last 2 hours by all the comments, especially yours. I’m so sorry for the final exasperation you’ve experienced after so many years of attempted normalcy. As I said before, I’m just beginning to recognize the total helplessness and frustration of the situation and it’s maddening to be so out of control! Good to know there are so many others sharing the frustration and can offer help. May God walk with all of us.
Janet
I’m taking care of my 95 year-old grandmother who, until only months ago, was fully independent and living alone. She had momentary memory lapses and her eyesight was severely impaired [macular degeneration] but, having lived in her home for 60 years knew it like the back of her hand. She fell and cut her leg and hid the wound from everyone until it got horribly infected. After I discovered it she went into the hospital and, later, a skilled nursing facility. She hasn’t been the same since. She sleeps a few hours at a time but fitfully. She’s anxious and fretful. Sometimes she thinks I’m her husband, other times her brother-in-law. I try explaining thing to her but it’s useless. They just aren’t retained for more than a few minutes. I’m very lucky in that she’s always very pleasant and appreciative. You have to know her well to tell that she’s angry about something. My hope is to do what I can to prevent illness or injury from taking her before she dies peacefully in her sleep. But I know that’s not up to me.
I’ve spent several hours here reading about sundowners after “Grandmother Ruth” got up at 9:00pm for breakfast and I knew I’d be getting another night of no sleep and being asked a hundred times why it’s so dark.
Thanks Brenda. Your honesty and compassion are encouraging. You did what you could— and then some. We’re all trying to make our way through this life with as much dignity as we can muster. Sometimes that means helping someone else hold onto theirs.
I’ve read some of the above comments, and, although I can certainly relate to everyone’s concern (my father died at 85 after 3 strokes, my grandmother lived to 101 and now my mother-in-law has been diagnosed of Sundowner’s Syndrome), part of me says:
30 years ago, it was normal for old folks to becomed SENILE! It was, for some, not all, a normal progression to DEATH. Yes, folks, if we live long enough, some of us will develop mental inadequacies. But today, we all want a reason, a name, and a magic pill to correct the condition. Wake up, folks. Death is knocking on the door, and this is just a precursor.
To comment on Maria,
We as family of people who has be diagnossed with sundowners or dementia need people with postive feedback we know that oneday our love one’s will die but this is a outlet for us to talk with one another and share our experiences and help each other.
In light of a book I recently read, I thought I would recommend it here in reference to Sundowners Syndrome. It’s called “When Pigs Move In” by Don Dickerman. He is a Christian—and this book talks very straight about the ministry God gave him as he was dealing and ministering to mostly prison inmates. He found so many of them (even the ones who had become Christians) still had certain torments—that they just couldn’t get a handle on—had demonic attachments. It was simply a matter of casting them out in Jesus name. Many in our culture today—will think this is way too spooky and would not happen in the USA—but I encourage you to read the book. He is very down to earth. If any of you read the Bible—he gives many references to this being a necessary part of our walk as Christians. So—–he also mentions many other areas that he sees these problems—and some are with people with emotional disturbances —such as Sundowners Syndrome or panic attacks or many mental illnesses. One typical comment people say they feel—is that they feel tormented. Even Pastors can have these attachments—which one I read about had gotten an attachment through a visit to a foreign country (where vodoo was commonly practiced) on a mission trip. Or—these can get passed down from previous generations, or through traumas….so many different avenues. My mother has some form of dementia—–which has been incredibly painful because of her seeming to be normal one minute—then go into a rage with all of these crazy accusations against my husband and me. Since reading the book—I have been praying differently for her—and have seen an improvement! Things are not totally solved—but improvements. I am not a professional—but know with all that I am dealing with with her—I am willing to look into whatever may help. Perhaps this book may be of help to you.(I ordered mine from Amazon)
God Bless and I hope your loved ones find some help.
As i finished reading all these posts, all of this I can relate to as my mom suffers too. Its nice to know that we live in a country that allows us to communicate and realize we are not alone in all this. God bless all of us.
to Maria Nekludoff: Of course, as you say, “death is knocking”, but this does not mean we have to let our loved one endure the torment of sundowner’s if there is something, ANYTHING, we can do to lessen their discomfort for the time they are with us. The same God who makes people senile also gives caregivers the intelligence and strength to search for solutions. We may fail, because senility is a natural part of aging, but we will not fail because we have given up. Each of us must deal with the inevitability of death in our own way–and this website has helped me on many a long dark night. Best wishes to all who are still raging against sundowners, and to those who can more peacefully accept it.
Hi, i am a 20 year old college student and i have been taking care of my 90 year old great grandmother. It is becoming extremely hard to watch her at night because at night she starts seeing her son who passed 3 years ago. Recently she slid out of bed and though she has ways of callinng me out of my room, she was talking to him instead. I usually get up around 4am to use the bathroom so i check on her and she thought i was on my way to school. I asked her if she was hurt, and she wasnt, i put her in bed and as i was laying her down she was yelling at “someone” over my shoulder telling them not to come back because they had not helped her. Last night she called me in at 2am to “remove” the guests who were having a “party” in her closet, i was shocked cause the closet door was closed! it took a while for the rest of the family to believe me because during the day she is perfectly fine for a 90 year old. My family told me i was just being lazy and that im tired for school everyday because i talk on the phone all night! I got so fed up i told my uncle to spend the night and sure enough he verified these strange behaviours my grandma has been showing. we took her to the doctors and the told me that she was fine and that she is greiving her son. but looking at the symptoms of Sundowners, i believe this is a perfect fit. And i ask, will this get worse or will it plateu?
Your great grandmothers behavior is very common. I can’t say if it will get worse or not. But please keep your sanity and keep your compassion. Sometimes when the end of life is near elderly people tend to think they are seeing ones that have passed on. Very common. And hey if they already have one foot in heaven who knows what they are seeing. We will never know until we get there ourselves.
Today as I was visiting my Mom she pointed to a lady across the hall at the nursing home and thought it was and old friend that died years ago. She even commented that she was looking wonderful for her age. Go figure. She also made me write her a grocery list out and to bring the groceries right back because she is having a luncheon later and needed more roast beef. i said I would, tucked her into her bed, kissed her and she fell asleep.
So keep doing what your doing for great grandma, it takes a special person to be compassionate and understanding. Hang in there, don’t worry. Tell her next time you told them to keep the party down or you kicked out all her “guest”. I only hope I have a great grandchild like you one day. Peace.
Thankyou to everyone who has contributed to this forum. I have read all your comments and it has really helped me to understand how many are out there with the same situation. I am the primary carer for my mother-in-law who is 86 yrs old. She is blind with MD, deaf, has Parkinsons, severe osteoperosis, and dementia. She has suffered many TIA’s (mini-strokes), and after each stroke never returns to were she was in her health. The last one a month ago left her unable to walk. Fortunately, after a week or so she is now walking assisted and with a walker.
Lately she has been suffering severly with Sundowners, it starts about 5ish for us and continues throughout the evening. She has suffered this for a number of yrs and has progressively got worse. Some nights she has terrible nightmares, screaming and calling out. I wish there was more we could do to help her relax. My husband is wonderful and explains things to her and sometimes she just cannot be consoled.
She is also becoming very cranky for no apparent reason, and wants to know why this is all happening to her? It must be terribly frustrating for her and I feel life can be so cruel sometimes.
After reading the feedback, maybe music and light could help in the late afternoon/evening to help with the symptoms of sundowners. Anything would be good if it helps to take away the frustration for her. It is getting to the point where we are dreading 5 o’clock comming round.
It is wonderful when we can look after our families at home in their later years and hopefully give them a dignified and enjoyable life. We can all do our best and only our best. Good luck to all out there. God Bless.
I wrote the post above on 2/27.
After six days in the hospital my grandmother passed away very early yesterday. My regret is that she suffered nearly the entire time and, when I wasn’t there, was calling out for me. I visited everyday, sometimes several times a day but she slipped further and further away. She died on the morning of her 95th birthday.
Perhaps it is because I only took care of her for a short time but I have to say that I
was totally unprepared for the emotion I experienced; that despite all the frustration and resentment [and the GUILT I felt at being frustrated and resentful] I would have gladly turned the clock back to just spend another day with Ruth.
I miss her more that words can say.
Steve,
I offer many condolences on the loss of your grandmother Ruth. That was also my adored grandmother’s name and I, like you, would give anything for another conversation or a look at another sunset with her. We have what we have and we do what we can do and cherish the rest. Best of luck in your journey.
Janet
To Steve–so sorry to hear about your grandmother Ruth. You must have been a wonderful comfort to her, and I’m sure she loved you and was proud of you–even though she couldn’t show it or express it in her last hours on earth. We are now visiting my mother-in-law (95) in the nursing home (almost three weeks now) and she seems to be settling in. Our time with her is less stressful, and though we still feel guilt, we see that the “home” she wants to go to is the one in her mind. I hope when she passes to the other side, she will find that home and the peace she has looked for for so long.
Get the book The 36-Hour Day for all caregivers
My father-in-law is 86 yrs. old and does have sundowners until time changes. He is terrible when the days are short. He doesn’t watch T.V. , read, work puzzles, viist with anyone on the phone or do wood wooding. He just walks from his house to mine. He drives me crazy. He is attached to me to the point I want to pull my hair out. He has to know where I am at ALL time and he can’t even be left with his own son or grandson to give him his medication or my daughter in law who is a RN with out it being a war. This has been going on for almost 5 yrs. He has got to where he fusses about strange things and I ignore him. When summer comes he is a diffrent person.
My father-in-law is 86 yrs. old and does have sundowners until time changes. He is terrible when the days are short. He doesn’t watch T.V. , read, work puzzles, viist with anyone on the phone or do wood wooding. He just walks from his house to mine. He drives me crazy. He is attached to me to the point I want to pull my hair out. He has to know where I am at ALL timse and he can’t even be left with his own son or grandson to give him his medication or my daughter in law who is a RN with out it being a war. This has been going on for almost 5 yrs. When summer comes he is a diffrent person.
My 88 year old mother is visiting us now and we want very much for her to move in with us. She also suffers from demitia and Sundowners. I have always been close to my mom and having her get so angry with me hurts so bad. I know that if she really knew it would hurt her just as much. I find comfort in knowing that she will not remember what she has said the night before. This is a woman who has been so independent and now she cannot accept that she cannot remain independent. We know that it will only get worse and I am so frightened what might happen to her if she should go home again. I am the only one of my siblings that she would even consider living with and yet she still is fighting the thought of moving in. We have thought about not telling her and just not take her home.
I live with someone who is 49 and has been showing symptoms of Sundowners for many years. I thought he was taking drugs or drinking. His mood quickly changes and he is aggitated, very confused and picks fights. Can someone who is this young have this?
THEY ARE SO DIFFERENT… My darlin, my sister and I took care of my mom and dad for 4 years around the clock, two hospital beds, to wheel chairs, the whole nine yards, yet it was wonderful. Mom and dad died at home with us, we were able to communicate every day, they remembered everything, and each on the day they died was able to say I LOVE YOU, and thank you, for whatever small thing we might have done, while both were worried we had not got enough rest, or that each of them was in worse condition then the other. they passed within 9 months of each other, after celebrating their 50 wedding anniversary one month before dad passed. the only thing that keeps me from calling them back is the last day of mom’s life was very hard…… i would never want her to suffer that day again. .. Now.. i have my mother in law.. she has alzeheimers, and has small issues after reading your notes of sundowners.. she has been with us for over 3 years. I have dealt well and she hasnt been so bad till lately… I home school a 9 yr old with special needs and have a 4 year old. they came to me from another special needs child we raised in foster care.. so i am no spring chicken. My mother in law , has seizures and TIA’s, she in the last 6 months walks all day, up and down the hall, complains, and argues, she will have sweet minutes where she says , “i got this new shirt today, ” and i say yes it looks wonderful.. she tries to be nice to the kids.. but those moments are fewer and fewer these days. My kids see how I am responding to her, so i try to say to her what I want them to say to me, when my day comes. it is hard… my 4 yr old is watching the 78 yr old, saying, sit down, don’t do that. yesterday, after 8 hours of HER, ALL ABOUT HER, you can not walk with your kids, talk with your kids, plant a flower, carry on a conversation for 5 minutes,without talking to , or about HER. GUILT.. jezzz… Guilt, I am learning to shake it off… I remember one day on my way to work, with my parents at home, i would be up at night, from room to room, breathing txmts, emptying pots of blood, going days with very little sleep and so scared Mom or dad would leave this world while i was at work i was crying driving to work, I felt I was chasing the grim reaper away from their doors nightly, and as I was driving, a voice came to me and said… IT IS NOT THE GRIM REAPER, is it angels, and they are not in a hurry, they are only there to watch and take over, when my time for caring is over…. A COMFORT came over me, and I relaxed, as who else would i hand off the most precious things in my world to but GOD’S ANGELS. .. I never stressed over the grim reaper again… and when it came time to hand off, it was ok, I miss them greatly… Now… with my mother in law, I can’t wait to hand off, and the guilt of that is unreal… i have been up for nights, with things that are not real, i am glad to say we dont chase spooks with her, but she wakes constantly, see the potty chairs, SAYS OOOOH I MUST SIT ON THAT…gets up, cant get back on the bed without help to lift her feet, so she walks and yells… i put her back to bed… 45 minutes later, she wakes and sees the potty chair and say.. I MUST SIT ON THAT….. and here we go again. If it werent for laughing at somethings you would go nuts… I do want to say, after having been on both sides of the fence.. their is a time to hand off… sometimes to the professionals, and sometimes to God… YOU.. deserve a good day, and you are here to do a lot, but some things require a team… not and individual… It is ok, to hand off , we are not yet ready to hand off with my mother in law, but we are talking what will be the point , at what point to you have a team take over, we are now imprisoned, we can not do anything, with her because of her physical health, she can barely walk, and her mental health, in her states of confusion. I could take care of 6 elderly like my mom and dad, and not feel near the exhaustion i feel with one alzheimers person.. I am blessed to be in a relationship, where we talk as a team, we plan as a team, we trade off, you may not have a spouse who takes over when they come in… i know she will not remember what i said or did to her or for her in 10 minutes… but , my children will remember how i was to her, I say… i have granny, i cant walk while you bike, i have granny, we cant work out side, i have granny, we cant go to the easter egg hunt, … my stress is so high i am getting sick from dealing with the situation.. so whether is it you mental health or physical health, you are taking a beating trying to do that which a team is needed to do. there are some good nursing homes as well as bad ones, the thing not to do is abandon them, once you find a team to work with them, even if they dont know, go by and check on them in the nursing homes… but you have to take care of yourself, and I know i have to take care of me, I have kids to raise, I have been getting very sick.. so.. please take care of yourselves, and hand off to a team, when you know the time is right, letting go was very hard for me with my parents… I watched as their bodies, shut down.. I watched as they visited with family on the other side, they were there more than they were with me… my mom and dad had all their senses when they passed, they told me seeing the otherside with eyes wide open… we celebrated.. the reunions they had coming… I might cry in my room… for i was loosing them.. but I was happy for the otherside whom they had not seen in a long time… my parents told me of those who came to them in their sleep as well… and how good they looked, and how happy they were to see them, how could i not be happy for them… their bodies were tired.. they could tell me that daily… when we finally called in hospice, they had a book, with the poem… the last part was of a ship sailing… we cried THERE THEY GO.. the other side.. cried HERE THEY COME….
it’s ok to let go… my love to you all… and my understanding…
to Lynda and all, one month ago we decided to let my mother-in-law be cared for by a nursing home team. For me it was good decision, as I had the bulk of the care of her at home, and had a surprising amount of guilt, though I was doing the best I could. She is doing about the same at the center as she was at home–a big relief to me. She still knows her son, but not me (for ten years I was her primary caregiver). She still gets worse in the p.m. and chatters for hours on end. It is harder on my husband who cannot be in charge any more of her life, and he is gradually letting go. This is a valuable service that the center provides–giving the ones who are left behind a cushion of space to become accustomed to the absence of our dear ones. He talks of bringing her back home for the end, so she will not die away from her family. So this we will do if we have the advance knowledge. Lynda, your story is very comforting and enlightening. I truly could not have provided the care for her as much as I did if I had children. My grandson, who is 13, observed one day, “you’re busy with her now, we’ll have time to visit later” –so he was able to give me support by being patient. God bless you and your children, who will have the opportunity to someday care for you.
i have a friend that is 30 years old . i am noticing her having some signs of sundown syndrome. is she to young to be having this problem? and if not what kind of help can she get and where.
Does anyone have suggestion about how to respond when your dad (87 yr old) wants to go home or wants you to get him out of jail when he is in house he has lived in for the past fifty years. I understand the home he is talking about is only in his mind, but you cannot tell him he is already at home. He won’t believe it. I just go along with him , but is there anything, any trick that would help and comfort him? By the way, Brenda, your comments were very helpful to me.
It’s going to be hard to type this without any mistakes because of tears running down my face, so please forgive errors in this typing.
I too would like to know of any “ticks” that may help with sundowners. My 80 year old father has it. My dear mother tries her best and I have really seen her age in the past 6 months. I am an oly child and I wish I had siblings to lean on.
AT what point does one turn the care over – my mother doesn’t want to do so as long as he still knows her – which he does in the mornings.
When do the tears stop? Do they ever?
Michael T
to Michael T,
You cry and you deal.. some times you go from being your dad’s son, to being his social worker, advocate, then when you least expect it, you are the son, and you cry again.. worry about your mom, she needs help, call all the local services, senior services, hospice, see what is availible to help your mom. then look at the nursing homes, who give respite care(that is weekend care). she needs time, to be her, and get a break, we have nursing home, that has an open bed on weekends, and we put our mother in law there. They have CNA’s who help, we give her a book with pictures that says we will pick you up Monday. and a chart to mark off the days. we take her over on Friday after noons, and pick up on Monday mornings. I didnt have that for 4 years, and it is wonderful. we can have a touch of normal life. Your mom doesnt realize how much she is doing and how tired she is. Our loved ones dont sleep at night, so we dont sleep. take care of the care givers… it’s ok to cry, I used to do it continually, now once in a while.. pray, do the best you can.
Michael, my heart goes out to you reading this. I am an only child also and it’s very difficult without any siblings. Unfortunately, my parents had me when they were older, so now that I am 44 years old, I’m having to deal with the same thing. It’s terrifying to see it and even worse because there’s not much you can do on your own. Get as much help as you can, ask for help and yell if you have to (I’ve found raising my voice tends to really get their attention as I scare the crap out of the medical profession!). Also, get an attorney. I’m taking my dad to the elder law attorney tomorrow to sign new papers including a health-care by proxy directive which allows me to make all the decisions related to his health care. We have a power of attorney (POA) but even with that, they sometimes won’t give you all the medical records that you need….I can see the point of HIPAA but did they ever hear of extenuating circumstances? Sheesh.
mike
i feel your pain…mom is only 68 and showing signs of dementia…
i dont think the tears ever fall….something that has helped me alot lately
with this new diagnosis of sundowners….is a book.
i recommend you read the book called the shack….its life changing
allows you to know and think of what GOD wants for dad…
in addition, i am a dir of a retirement assisted living community…GET HELP
children and spouses should not ever be caregivers its too close…
get someone to come in and help with dad…as long as you can….i agree
if he still remembers then allow him to be home….ur mom needs help at home
and so do you….
at some point the BEST THING for dad will be a unit that can keep him safe
visit often and really look for the best affordable place….
i know your exhausted…i am too….life is a circl…and its our turn…but
your dad would never want you to cater to him and be sad….just make sure
he gets the care he needs…and embrace that you ARE doing the best
and for his best interest….
to Marilyn–it was the same with us for at least the last two years–WHEREVER my mother-in-law was, she wanted to go “home”–sometimes I would ask questions to try to figure out what place from her past was on her mind. It was a place with stairs, a bathroom in the basement or with an outside toilet which she was always afraid to go to alone–especially after dark. In the nursing home now, she still wants to go home, but seems OK to be told, “As soon as you are stronger, we will go home…” or “whenever you are swallowing better, we will go home.” This way she seems more content to be where she is–which she does not know is a nursing home. Her dementia makes for some days being completely in another mental state, and some days she gets scared about choking, but on those days she is really “better” since she is in the present and can carry on a limited conversation. The nursing staff are cutting back gradually on her meds, which seems to help with her cognition–mostly Ativan as needed, and no Lasix at all. By the way, some of her agitation was from needing to go to the toilet but not being able to express that urge. When we regularly toilet her, she is much more restful. Also another trick they taught us, when she gets agitated, we distract her by “playing” cards. This usually requires us to help her with each hand, but she has a vague idea what is going on. She loved dolls all her life, but has NO INTEREST at all in dusting them, dressing them, etc. So maybe, you could experiment with your dad by putting items within his reach, like a puzzle, non-dangerous tool (like sandpaper and a piece of wood), to see what things he could focus on, even in a limited way. Also we found out noises negatively affect her–like a loud truck or airplane, which can trigger agitation. Trial and error, one thing at a time, one day at a time–God bless you and your dad. Hang in there, your concern shows you are doing a good job, and trying to help him. He is lucky to have you.
Hi to all here. I was just searching for information on Sundowner’s Syndrome on Google and thankfully found this website. It is reassuring to read that so many others are going through the same thing and that I’m not the only one. My father, who is 93, is living with me while I complete my paralegal certificate in Health Law at Widener University in Wilmington DE. I live in West Chester, PA and am changing careers at age 44…had I known he was going to get this, I would have stayed at my old job, bad though it was! Soon after moving here from Central PA last May 2009, he really began to get dementia. I know he had symptoms of it before, but the move made it much worse. He got very agitated and one day was threatening me. I was in the bathtub trying to get a bath and wash my hair and he was screaming at me because I wasn’t fast enough and he was “dying”. He said he felt like he wanted to commit suicide (sometimes I wish!). Anyway, to make a long story short, he was admitted to a psychiatric hospital for 2 weeks and treated by a geriatric psychiatrist who put him on Seroquel. He has done well on this, but needs another geriatrician; the one he had was very young and inexperienced and frankly, I can’t believe the University of Penn Health System hired her;she reminds me of an inept kindergarten teacher who talks in a “baby” voice. She didn’t want to prescribe other meds for him, including Axona, because she didn’t know about them. I am taking him to a geriatrician with a lot of experience on May 20 and will post here how it goes after the visit. It’s a real uphill battle and nobody understands this until they’ve had to do it themselves; I had heard about it, but until you have lived it you have absolutely NO IDEA! He is okay during the day–very quiet, no agitation–but as soon as 5 pm comes around, watch out. He is given the Seroquel right around 4:00 pm. I also have found that he cannot have coffee or too much tea, as that makes the agitation much worse. The biggest problem is the lack of short-term (working) memory; he recently left a pan on the stove while I was out of the house and when I came back, I found that it had caught on fire and he’d put it out with a towel and a throw rug and then did not remember any of it. That is what is so terrifying. He now has a home-health aide with him when I am not here so he’s never alone. The interesting thing is that he knows he can’t be alone and although he initially resisted getting an aide, he now realizes he has to have one, and she’s great with him. Ultimately, I think, the USA has to have more support for caregivers because as the population gets older, this is what is going to happen, and you can put that in the bank!
I was told to get the book 36 Hour Days….it is so informative and so helpful for how to talk to your parent/grandmother father with dementia/alz…..
they MUST get reassurance at all times….joking is not something they understand most times…sarcasm huge no no…..view your parent as a child who will require explanations…and patience to understand…
its so incredibly hard…tears and siblings who do not educate themselves do NOT understand….make them! FORCE THEM…or they will yell and get frustrated and cause her tears…and that is NOT supposed to happen…ever..
Very heartbreaking stories to read. I suggest looking up delirium, as this is the most common cause of many of your loved ones symptoms. In an elderly person, having a new infection, or a hospitalization or surgery will often cause delirium. It is a waxing and waning condition that is often mistakenly called sundowner’s. In the hospital/ICU we use Haldol for it if it must be treated, but try to avoid valium and related meds. (ativan, xanax….)
Good luck to everyone, and keep on being the gentle, caring relatives you obviously are.
Jill, thanks for reminding me of HALDOL, I had forgot of it. It might work better than valium or zanax. I wil ask her neurologist. lynda
My mom is 75 yrs.old, and I can’t be sure what is wrong with her as after 6:00 in the evening I can see a change when I try to explain things to her. She can’t understand anything I try to tell her. She starts telling me things that happened back when she was a child, and doesn’t remember what she was talking about. Sometimes I get so frustrated I have to leave the room to gather my wits and she starts crying or just pouts. She has chores to do and 1 chore in particular is doing the dishes and each time she unloads the dishwasher she either puts the dishes in places where they don’t belong or forgets where she puts them. She often forgets to eat or when she ate last. She acts younger than my 3 yr. old grandson at times. She doesn’t like to go places with me and would rather sit in her recliner and rot than go anywhere. She can’t wait to get home and get back to her chair. She doesn’t like to take showers, telling me she is afraid her skin will get wet. What do I need to do or who do I need to talk to? She seems ok when she sees her dr.and says is just fine and hates it when I tell him what she is doing. HELP!!
Dear Kathy, It is hard when our parents become our children. The realization that they are not the parent in the house, they have to be cared for, and need reasurance like a child doesnt seem normal. however, each of us as we begin our walk through the valley of the shadow of death, will each have issues someone will have to deal with. She is not rotting in her chair, it is her comfort zone, as she is going out of this world and into a new world, like kids we cling to those things that give us comfort like a child and their blanket. Like a small 3 yr old, she can no longer do chores correctly, and we have to pick chores they can do. if she can load the dish washer, have someone else empty it first. It is hard to continue to RESPECT the adult in them, while caring for them as a child. They become more uncomfortable in public places or away from home. The book 36 HOUR DAYS may help. She will only get worse, not better, you will need a support net work. Look at elderly day care. To help. You will have a lot less arguements, when you become just a listener. comments, when they are in the past .. like .. did you have a good time then mom, are your friends there. Don’t argue, just love them as they are, and for what they can do, not what they can’t do. WHO DO YOU TALK TO; a senior care doctor , someone who specializes in senior. Geriatric. Get a referral to a neurologist, so you can get the right meds to help her. You are her parent now, only you cant schold her, it won’t help and does hurt. I hear your frustration, there are support groups for those dealing with caring for their parents, they have idea’s that might help. You have a hard job. God Bless.
This can also happen to someone with brain trama, no matter what the age. My girlfriends daughter was in a car accident, and she has sheared her brain, and now has Sundowners, they don’t know if it will go away (we are hoping so as she is only 23 years old). Does anyone know if giving a sleeping pill at night helps?
My grandmother has Parkinson’s disease. Recently she has been getting paranoid at night. She constantly thinks people are looking in her windows at night, shining flashlights at her, trying to break in. She panics and turns her alarm on alot. The neighbors never see anything, nothing has ever been found to show there is any fact to what she believes she is seeing at night. Is it possible that this is a problem stemming from her Parkinson’s Disease?
Sandy, my dad has PD too, and has the same kinds of issues. His doctor thinks a lot of it is the PD meds. In fact, he just took him off Aricept to see if that helps. I recommend that you get a referral to a clinical pharmacist to review your gma’s med list and see if they can make any recommendations. Good luck. My dad’s behaviors are that he will get up and night and put all his stuff in a box because he was “told” that he was leaving. He’s done this 4 or 5 times in the last couple weeks at the new care home he’s at. The last time he even said someone else did it, not him. He’s also gotten really aggressive saying he’s looking for a weapon and that he’s going to hurt the people there. We think that might have been a reaction to the shingles meds he was just prescribed before that happened, so we stopped those and it hasn’t happened since. He also has progressive dementia and thinks he’s not an American anymore because he’s being kept there against his will and wants to go back to living alone. He wants to talk to the state department. He also asked me if i thought he would make a good fireman or policeman (not would have made, but make). Truth is, we’ve been given a 30 day notice to vacate him because of the aggressive behavior, but his doc thinks we can get him stable by tweaking his meds here and there. Only time will tell, but he does know that he’ll have to go to a more secure location if his behavior doesn’t change, and he knows it won’t be very pleasant. This is very sad and scary for all of us to watch and try to deal with, and i think it will only increase in prevalence as years go by and more baby boomers are aging. There are scarcely enough secure facilities that handle dementia and take Medi-Cal, for example. What are people supposed to do? Most of the time these kinds of patients cannot be cared for by family in their home. It’s way too difficult on everyone and not the best thing for the patient.
On M/D my sister came by to see mon and she asked her who she was there to visit. My brother later called and she asked who he was. Now this was in the day time and she never seems out of sorts during daylight hrs. As time progressed I had to leave for a short errand, I told her I was leaving, and when we returned she started screaming at us for not telling her we were leaving. I cooked dinner and she couldn’t tell me whaqt she was eating for dinner. She said it was good but what was it. When we were watching T.V. she had to narrate all the movies which forced me to leave her to her own devices. She then got ready for bed, and she uses a CPAP at night only and insisted it was positioned with the nose piece was to go on the back of her head. I finally had to force my hand to make her wear it correctly. I was ready to yell at her but just went in the other room and cried. She sits and talks to the T.V. all day and night telling them what they should be doing, like they can hear her and then shes picks up a shoe and throws it at the T.V. I’m confused at what to do.
kathy, it sounds like her condition has progressed to the point where it may not be feasible (or even best) to keep her at home with you. there is no way you can keep dealing with that, and from what everyone says it will worsen over time. i feel for you, because we just had to move my dad into a home after he has been cared for 24/7 in his own home by a live-in caregiver. of course he hates it (even though the place is like paradise, much nicer than anywhere he’s ever lived before) but it’s the best we could do for him with his income. we are applying for Medi-cal and know that we will have to move him to a lock-down location if his condition progresses further. so hard on everyone. i wish you the best of luck and wisdom for her future decisions to be made.
I am new at this. My husband had been diagnosed for two years. Last week, my husband and I bought carry out breakfast from a Coney Island. He got the super breakfast, which has everything in it. After eating, he offered to take out the garbage. When he returned from taking out the carry out containters, he asked, what are we going to eat for breakfast. He became very angry when I tried to explain that he had just eaten. I just cooked another meal and he ate again. On Christmas eve, our children came over and brought gifts. He opened them and appeared to enjoy the time, but the next morning he didn’t know where anything came from and why it was here. We all have to pray for one another as we deal with this evil disease. I want my husband back, but I am at a loss.
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