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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Thanks for the advise. I am going to see her dr. in 2 wks and see if he is still intertaining te idea of more testing. She had a very bad kidney infection that ravaged her whol body laast year 2 times and this is when she started acting like this and along withe the past illness she had fallen down about 10 to 15 times in the past 1 1/2 years. each time she manages to hit her head and she is way out there when this happens. Within the last 9 mo. each time she falls it makes it more and more difficult for her to get around and can’t stand up straight.
My Mother also is possibly experiencing Sundowner’s, along with other complications. About 10 days ago she had erratic behavior, which included not believing she lived in the assisted living she had been in for 20 months, threatening an aide, and trying to walk out. After I took her to the hospital, it was determined that she had a urinary tract infection which was suspected to be the culprit for the sudden-onset erratic behavior. After antibiotics she still has confusion, but no real erratic behavior. Now the confusion is considered to be related to Sundowner’s. After a trip to the doctor soon, maybe we will know for sure. It certainly does appear that the UTI or a kidney infection can cause irregularities in behavior. Also, a friend of mine had stroke-like behavior with a UTI.
I care for an elderly lady friend in my home. Last December we got up one morning on the coldest morning of December only to find her in her floor with literally everything all over the floor. It was a horrible sight, which looked like a crime scene if you asked me because in falling or getting out of bed she scraped and hit her arms and legs and they were bleeding. When I asked her what she was doing she responded in such a way I thought for sure she was having a stroke. I called an ambulance and she was taken to the hospital and the ONLY diagnosis they came up with was a UTI. I had been told this infection could cause confusion (major confusion) in the life of an elderly person, but I didn’t believe it until I had to experience firsthand!! I don’t understand it, but sure as life, that’s what happens. Now she fell and broke her pelvic bone about 6 weeks ago and she hasn’t slept an ounce in her bed, at night but she sleeps sitting up in her wheelchair during the day. Someone told me this is referred to as “Sundowners” s syndrome where they’re afraid to go to sleep at night for fear they will die. I have tried everything to get her to sleep at night to no avail. She goes to the doctor in a couple of days. Hopefully he will be able to offer me something that will help her.
Darlene,
My dad did the thing with taking all his stuff from everywhere in his room and putting it all on a pile on the floor. He would also keep moving stuff from place to place, all day and night, obsessively. When we moved him into the first assisted living home, it got so bad they emailed me pics of what he did, and i couldn’t believe it. His room was trashed. He would also pack up his stuff and say he was told to do it because he was going to be leaving in the morning. They checked him for UTI’s every time, never had one. But every medical professional that has ever seen him confirmed the sundowners syndrome symptoms. He also would respond (or have a lack of response) and they would think he was having a stroke. Most of the time no stroke activity was found, although he did have more than one stroke over the last couple years. He also did the refusing to sleep in his bed and only would sleep in his wheelchair. Good luck with the doctor appointment. I am not aware of anything that helps with this condition, except heavy sedatives and restraints. It’s a shame, an awful way to live. My dad just passed away 10/29 (we are relieved his suffering is over, so it’s a good thing). Hate to be a bummer, hope it will go differently for you.
Sounds like she could also have some brain damage from the falls….possibly subdural hematomas, possibly hydrocephalus. Both very serious. She should get a CT scan of the head. Falling and not being able to stand up straight are classic symptoms.
Dear Kathy,
I don’t know your whole story but have worked with the elderly for years and have seen this falling syndrome many times. There could be mechanical inner ear issues, medication reactions, poor nutrition/ dehydration, joint issues and possibly a neurological disorder. Have you considered a short term stay in a nursing or rehab facility? If the falls do not stop, it will be very difficult to diagnose the underlying cause and could actually make the dementia worse. There is also the issue of risking further disability with a fracture, concussion, blood clot. The loss of self confidence and fear caused by these repeated falls additionally muddies the waters and makes the treatment more complicated. Good Luck with this situation,
All the best,
Meg
As it turns out, my mother-in-law has a heart condition which had gone undiagnosed until her first fall. As long as she continues the medication she does well but if the heart meds are neglected she ends up in the hospital and rehab again where discussions continue within the family and physicians in regard to whether or not she needs the heart meds. Sounds like they’re playing with mother’s life, doesn’t it. She has terminal cancer now and their discussions are neverending. Some think the heart meds should be stopped in order to treat the cancer while others think the cancer treatment should be top priority. Unfortunately, she waited too long. In her state of dimentia she never knew she was dying and now she hasn’t got much time remaining. PS The falls will not necessarily stop inside the nursing home. They try but even standing right beside them, they still fall.
Just wanted to tell those of you who have written encouraging words to me from time to time–my 95 year-old mother-in-law joined the angels on Mother’s Day 2010. After living with us for ten years, in a nursing home since March 1, she developed accelerated swallowing problems., complicated by congestive heart failure and atrial fibrillation. We had decided to bring her back home, but we wanted to be sure she did not have pneumonia, and she was to have x-rays the next a.m. My husband had given permission for hydrating IV’s, but before she had to endure the procedure, which we know would have scared her and caused her great pain in her dementia, she went quietly to sleep holding her son’s hand. When we could no longer care for her, the nursing home did. When she could bear no more and was sooooo tired…God took over her care, and opened his comforting arms.
So to all of you caregivers who are still hard at work, bless you. God knows what you do, even though your loved one may not. We are still numb, and not sure what to do with ourselves. To the website people, thank you for what you do for all of us.
Brenda, I am sorry to hear about your MIL. I am glad he was with her when it happened. Thanks for the last paragraph words. I think it’s all really important to remember that God is in charge, it’s not all up to us.
May God bless you and your family. Even though I lost my mother three years ago to Alzheimer’s and Parkinson’s, it is still fresh in my memory. When they are sooo very tired, you pray that God will take them into his loving arms. The numbness will soon wear off and hopefully, you and your family will remember mostly the good times before the dementia. I will be praying for you and your family.
My Dad was sent to the Hospital by ambulance after being found in his apartment. He is Diabetic and his Doc had him on 4 different Narcotic’s along with Diabetic med, blood thinner, ummmm, I forget the entire list! However, he was moved from the Hospital to a Rehabilitation Center for PT, OCC, and strengthening to see if we could get him back to his own apt. It has not worked, and in fact, revealed a very disturbing diagnosis of Sundowner’s, although the Doc in the Hospital diagnosed him with Senile Dementia. His age is 91. He had been driving to the store and back up until this incident at home. He had 2 other fall incidents, and now I’m very concerned that he may have had underlying illnesses that contributed to all of this, along with FOUR Nacotic’s given to him! One given should never be prescribed for anyone over 60 because the body does not get rid of or process meds like we do at 30 or 40′s. We recently realized he will not be going home and is in skilled care now. I have not lived at home for over 43 yrs, and actually live out of State, so I only knew when I would call him, VERY FREQUENTLY how he was doing. He seemed to be tired all the time, and I figured it was a Med I KNEW HE WAS ON, not all the one’s he had in his Apt. I guess I’m feeling pretty angry right now, not knowing but most of the family “did not want to upset me” so I only recently knew how bad Dad was doing. (I’ve had MS for 40 yrs and recently was homebound, wc bound the last 8 mos. with caregivers in my own home. I’m so sad thinking of all who have gone through this, and our journey is only just beginning. Thanks for being here!
Just wondering how fast dementia can take someone? It was diagnosed last year and now my Mother keeps saying she’s leaving this house and going home. A couple of times I had to go outside to get her. Since then there is always someone here. It just seems like it’s progressing really fast. Is this possible? Then she’ll have a week or two of almost normalcy, then 3 or 4 days of absolute craziness. I don’t get it. I just need some advice or I don’t know what…thanks anyone for answering me. Frank.
Frank, it is definitely possible that dementia moves that fast. At lot of it can be medication related, that is what I am finding with my dad. Over the past few weeks he’s gone from nice clear sometimes confused gentleman, to aggressive threatening violence looking for a weapon, trashing his room convinced someone was going to kill him, back to nice and apologetic, and on and on. We just placed him in a residential care facility in April, but it’s looking like already his behavior will necessitate us moving him to skilled nursing. I would recommend that you ask the local area agency on aging or senior centers for some good referrals for geriatric specialty doctors who are dementia experts. I would also recommend that you have a clinical pharmacist do a review of her meds list to see if they think they could be causing some of this. Good luck to you!
Frank
My Mother was diagnosed with Normal Pressure Hydrocephalus and had a vp shunt placed. The shunt broke and Dr, did a shunt revision and caused a brain hemmorhage. Since then all her symptoms have gotten worse. Some have gradually improved but the one thing that does not change is when she gets tired, she says she wants to go home. She asks us to take her home and I am sure she is talking about the home she is in. It’s hard to deal with and I can relate to how you feel.
Sandy
My dad has been acting strange, no diagnosis, or anything.I have noticed things like he will get up ,go in the kitchen ,get a butter knife out, put it in the sink and go sit back down. Then he does it again a few minutes later.Also he’s up at the crack of dawn doing yard work?! I know he won’t let me go to the dr. with him what do I do ?
Amy, why won’t he let you go to the doc with him? I was going to suggest you take him to a geriatric specialist (how old is he?) to get some tests done. Your local alzheimers association would probably know some good ones to refer you to. Find out if they take medicare first. The Alz association could probably also give you a lot of good advice on how to work with him from now on. I am sure some of the others on here will have some good advice for you. Hopefully his will, power of attorney and advanced health care directive are done. If not, he should really do them before he gets too far gone. I suggest you read the 36 Hour Day (it’s on amazon). It will help you prepare if he is indeed heading towards a dementia. Good luck!
Hi, Tammy my mother has been vaguely diagnosed with ALZ, however there has been as of late some disturbing behavior. For the last 3 days after sundown she has had varios episodes of what appear to me to be sundowner syndrome. She’s 86 and can still walk but it’s not very safe and she HAS had both UTI’s and a
TIA back in 1999. The first night I walked upstairs and she turned suddenly to me and said, ” the tv. is on be we’re at a different place. It was so scrambled that the entire scenario was never made coherant. But it was as though she was hallucinating. Last night she kept asking what time it was (this was after sunset) not realizing how disorented she was I said “oh it’s almost ten” she replied”well I guess it’s time to have breakfast now”. And though I told her it was night time she wouldn’t believe me, and persisted with this look of incredulity. Tonight she ate at 6:30 pm. and at nine thirty said “when are we going to eat”? I told her she had already eaten her reply was “who do you think you’re fooling”? So I showed her the dirty pan etc. to no avail.
My imediate concern is that she seems to be unconvincable as to the truth, and I am detecting a slow rise of her aggression or hostility toward me because she cannot believe me.
Perry, I will suggest the same for you as I did for Amy above. Have you read the 36 Hour Day (scroll to the bottom of this page)? It will help you a lot as to how to deal with her increasingly aggressive or incredulous behavior. There are definitely right and wrong ways you can handle it. It’s a tough situation, and there isn’t necessarily an answer. What meds has her doctor given her to take, if any? Trying to convince them of the truth generally doesn’t work, although it’s our natural response. You’ll only frustrate her and yourself. If her hostility increases, you may have to consider assisted living. When my dad got to the point that his one caregiver couldn’t handle him anymore, we moved him out. His symptoms progressed super fast, and we went from one assisted living, to another, then to skilled nursing within a 2 month period. That started this April, and he went home to Jesus on 10/29. I am relieved that his suffering is over. Most cases don’t move that fast, and I hope and pray that your mom’s situation gives you time to think and make the best decisions possible for her (assuming you are the one in charge of doing that?). Good luck Perry.
My mother is progressively getting worse with dementia/Alzheimers. she has fallen 3 times in the hospital ward & we think it may be from neglect. They said she had a seizure, but she has never had a seizure before. I am wondering if the Alzheimers has anything to do with her falls? Her doctor doesn’t explain what is going on, with her falling. we are ready for file a complaint with the state on elderly abuse & consult an attorney. My mother is confused & cannot tell us anything about her falls, & what the hospital is saying does not add up. I cannot bear the thought of her being abused, but is the something medically related to her falling?
Dear Rose,
My mother in law is having the same falling problems, no one can explain because they don’t know… Like others here at sundowners , falling is part of the problem, they loose ability to keep balance. 3 weeks ago, my mother in law could eat and drink without assistance, walk with a walker, tell you if she needed to potty, and walk with you to the potty. she could walk to the car and get in and out.. 2 weeks ago, she could walk with a walker, get in and out of the car with assistance, but would forget she was in a chair and mess in her pull ups, she started throwing up because she was not chewing her food, then she would forget to finish eating if you didnt tell her to eat each bite. 7 days ago, she could stand with the walker, sit in the wheel chair, stand at the car so you could help her get in the car to go to day care, she would eat 1/2 of her food, and began sleeping alot, the day care said she was more combative and needed her meds. on an emergency visit with neurologist, whom she has seen since diagnosis of alzheimers ( which often comes with seizures) he siad she was getting worse and it would come fast now.. she struck him 3 times in the office.. he is the sweetest man alive, and she wanted to take him out… then out side his office, she could not stand with walker to get back in car.. 2 days ago.. we got her up to go to day care, she could no longer control her legs, her brain, would not tell her legs to stand, and she can no longer follow directions of any kind, today… she is bed ridden, and has to be hand fed… helping your parents cross over will be the hardest thing you ever do.. at first there is shock that no one can fix her, then how to handle it without the frustration and anger stressing you out, it is what it is.. no one’s fault, how to help your love one to cross over.. treat them with respect, even if they are not giving it to you (they are sick , you are not) , keep them clean, give them what they want and don’t force anything you dont have to . dignity sometimes means dying without arguements.. the day car said she is always on her feet following someone.. my mother in law fell 3 times in one weekend, one time we were within 4 feet and she had a walker, but her balance was off, and we could not move fast enough, then she fell twice at the day care, they were scared we would be mad, NO, we understood it is part of alzheimers, it takes balance away from them. there is nothing we can do, love her, even if she doesnt know me, keep her the way i would want someone to keep me.. Let go and let her cross over, with love. we know we have done the best we can and are still doing, so when she gets to heaven and looks back and all things are clear, she will know we did our best.. and she was loved.. that is all you can do, keep them comfortable and give them respect, and know when to hand off if they require a team to take care of them. we are looking for respite in a nursing home, but hospice is coming in this week, and may help. Whatever you do for her, she will know you did with love.
I have just found out about sundown syndrome as my mother has it and at the moment we are having most of the systems that you have said , and it has helped to to read what you have written and a lot of things are falling into place thank you
My father in nursing home broke two bones in his neck, is in brace but keeps getting up by himself at night to go to restroom. Glad to understand this could be a “part” of why he tries to be more active at night. It also seems to affect his sleep; rolling in bed, etc. which worries me since he wears neck brace. Any medication they could give. No restraints but nurses do not always hear bed alarm that beeps when he attempts to leave bed.
jmixon, my dad is basically bedridden for most of the day, but at night he somehow can jump up and down from the bed to the floor. they turn their back for a second and he’s out of bed. just recently he fell and hit his head. he is ok, this time. i know of no meds, other than super heavy sedatives that keep them in bed, that help with this problem. i share your worries. restraints are awful but sometimes necessary. i know that some facilities are less able to use them than others, and that their ratings on medicare.gov go down the more they use them. very frustrating for everyone involved.
My Dad has had Alzheimers for a long time about 12 years. He has slowly progressed which wasn’t so bad at first. But now. it’s been five years. He is in a wheel chair and just this week he has forgotten how to feed himself. I know this is part of the progression of the disease, but because his has moved so slowly, this change really shocked me. I am adjusting that he has to be fed because I have to. I know the next stage is even harder, when he foregets how to swallow. I really hoped the Lord would take him before this part. I know that is selfish, but it hurts so much to see him like this. I have been walking through this with him and I feel like I enter his world everytime I see him and then leave it and go back to mine. I feel like part of him has already gone and he has. This part is the hardest. His eyes just look right through me and he is so disconnected. I know he is not in pain which is a blessing. That is about all….it’s just hard
Please don’t jump to neglect. Although I assure you neglect happens, old people are quicker than one might think. Turn your head to get a wad of TP and they’re up off of the toilet and down of the floor as fast as that. It happens to the best of caregivers in the best of places and under the best of circumstances. You’ve said what the hospital is saying doesn’t add up. Okay, good starting point but remember your mother is confused and doesn’t know what happened so don’t try to compare stories. You might check BBB or other sites to find out if your hospital has a history of neglect but please don’t run someone through the wringer who hasn’t done anything wrong. Check your facts.
Meg and everyone, the problem about getting the story straight also works in the other direction, I found out. Thursday night my dad apparently attacked a caregiver. According to her, he was trying to kill her. She said she was covered in bumps and bruises but my dad’s friend saw 1 only when she showed them to her. They said he broke a window trying to escape and cut his hand and was chasing everyone around with a lampshade naked. Turns out he pushed out the window screen frame. Didn’t break the glass or even cut the screen. He had an abrasion on his arm, not a laceration that was bleeding all over the house. Obviously something happened, but we will never know exactly what. No reliable witnesses, including my dad. THEN to top it off, the caregiver was asking me to pay her medical bills and give her money for time she couldn’t work, when in actuality she was told she could see the doctor using the work comp coverage but she declined. She was also offered another position with the same company in a different house away from my dad, but she declined that too. She didn’t miss any work the 2 days my dad was there in that state of mind. She worked with him both days, no missed time. Boy was her boss pissed when my dad’s attorney called him. Then she got in trouble for trying to extort me behind his back. Nice, huh? Now that my dad has a documented violent episode, we can’t find a place to take him anywhere in California, and we have no idea where to place him. Aren’t we all having fun yet? :\
I have been arguing with everyone that they are giving myDad medications to make him behave irrationally but than I took him home only to find out the diease has progressed and its not the docyors and nurses its my Dads illness.
I feel so strange entering this site but I am having such issues with my mom that i feel others can help. my mom is in the advanced stages of als, my father whom is 90 still feels its his responsibility to stay with her, we take her out every day for 5 hours to give him relief and i know its not enough. its killing him. she has wanderd and most recently at night, trying to go home to her mom. she believes she is 35 although shes 88 she deprestly wants to go back to her childhood shen she was wit her mom, dad and her brothers. she doesnt remember having me as a daughter and only relates to her eariler life, im guessing when she was about 24. what does anyone suggest? I am planning on taking her on a “vacation” to my summer home togive my dad more relief maybe he can sleep. he is such a hard and loyal person i just want both of them to be happy
I am going thru the same problem with my Dad. Some days he thinks it’s 1970 and others it’s 1900, but so far it’s never been 2010. He has also fallen alot and it may or may not be the hospital. I recently ordered a book that really answers alot of questions. It’s called “The 36 hour day” It explains where the disease comes from, what to expect and some tips on how to handle the unexpected memory problems. According to this book some dementia/als patients can lose thier balance and fall or have very weak legs. My dad has fallen probably 10 to 12 times in the last 3 months. He has not hurt himself so much but he could and now we have him in a nursing care facility and they are taking real good care of him. I would suggest you get the book and educate yourself on whats next. It has helped me a great deal. Good luck and stay strong.
My Dad, sisters and I ALL read the 36 hour day and it helped us so much while Mom was going thru her Alzheimer’s. She suffered with it from 1998-2007; it was agonizing. My dad was able to care for her at home with the help of daughters and some skilled “at home” help but once she fell, broke her hip, that was it. Nursing home from 2001-2007. Read / re-read, it is so very helpful. Things you feel, wonder why my mom, why our family PLUS how to deal with caregiver fatigue. There was a “Senior Day Center” in Panama City where mom loved to go and do arts & crafts. A shuttle would pick her up and bring her home so my dad could nap, run errands, etc. Then she would come back, nap and it started again the next day.
Hi Debby….My Dad was falling alot too for a while. He has been in a Alz. Facility for almost five years. When he stopped walking and starting shuffling in a wheel chair, ,I was almost releived. I felt guilty for that, but at least he was less likely to break a hip of something. Have you noticed that your Dad has a different pain threshold than normal. I don’t think my Dad processes pain like normal, like things that would hurt me, he doesn’t even react. I wonder if that is normal for him.
My mom took care of my Dad w/alz. until she died. I know it’s hard but it is so important to let them live out this season in their life together as long as they can. Your Dad is probably scared to lose her but also overwhelmed. You don’t want him to have any regrets if she goes first. My mom fell and broke her neck and we had to disconnect life support while my Dad had alz. She wouldn’t have had it any other way. We all wanted to help her with Dad but she wanted to do it. They married for better or worse…all of that. Anyway, I have taken care of my Dad for five years now, so for my mom, taking care of my dad wasn’t a life long thing for her. My Dad is really hanging in there, even though he doesn’t walk anymore and has lost lots of his speach. Anyway, I just wanted to encourage you to let your Dad do as much as he wants to and as much as he can to he can feel useful to her. Hope this helps.
Dear Laurie,
My condolences. This is an awful situation however taking her to your summer home may disorient her
even further. That said, would you consider respite? This is a service offered by nursing homes which allows family members to get a break from care giving. Your mother would be cared for in the home and your father ( bless him) could have a break. I also wonder if it is good for you to be alone with such a dependent and wandering charge ( even if she is your mother). You need a break too. Have you looked into assisted living? many facilities, including the one my MIL lives in have several levels of care and there is help 24/7. Please do not think of any of these solutions as “abandonment”. Your mother is clearly unable to care for herself, your father is advanced in years and regular households simply do not have the facilities to care for such an ill individual. You can not do this alone unless you are prepared to spend every waking moment watching over your mother…Even then, it may not be enough… Good Luck.
My brother has been diagnosed with cancer Melatona he is in stage 4 he gets very confused and anxious at night. Is this a condition that cancer patients get?
Hi,My dear sweet aunt is 70 years old and was living alone until my uncle passed away at that time she moved in with her son.Everything was going fine and she got sick last winter and got really dehydrated. Since that time she has been put on a lot of medicine. I myself do not believe she has dementia but is way over medicated. She is confused about all of the medication she takes and sits and stares like someone over medicated. Some days she seems fine then other days she repeats things over and over.She says she doesnt know why she is like she is, so she realizes that there is something wrong. Her kids are so fed up with her which hurts me so bad. Is there a certain kind of Dr. I can try and get her to go to to check out her medication and see for sure if she has dementia..Thank you so much for your time and thanks from my sweet, sweet Aunt!!
Dear Edna,
Please see a neurologist, he can test her and test the medications. if she has a doctor apptment go with her, tell them the problem you see. Ask for a referral to a neurologist. Some people are what we call CHEAP DATES… that means, we need half the medicine doctors normally perscribe, ask the doctor is she can cut back on any meds, and yet make sure she is getting the meds she needs..
Edna, for my dad, we found him a geriatric specialist, who also sent him to a clinical pharmacist for a full meds review. You can ask the local alzheimer agency or senior center or other place like that for referrals, i would imagine. good luck!
to all, we now have hospice in, with my mother in law, but I wanted to thank the lady who worked with dementia patients in the hospital. she suggested Haldol, and when hospice came in, we got Haldol, all the depression meds did not help, the anxiety pills did not help, but Haldol did. I actually got to have a small conversation with her, it didnt last too long, but the yelling and screaming and night terrors have slowed WAY down. I think of all of you daily, my prayers are with you…
Lynda, glad the Haldol worked for your MIL. It didn’t help my dad unfortunately. Ativan is the only thing that seems to keep him under control, and now he is in the hospital after he attacked one of his caregivers. since he got violent, no facilities want to take him. still looking though. best wishes for much comfort for your MIL.
My husband has terminal cancer and is a confirmed Sundowner, has been violent on some occasions. He is currently an inpatient in Hospice but last night they called me to come help them get him back in bed. He is fast as greased lightening when he goes. He is going to be released out of inpatient tomorrow and I am desperate. We just lost $3200 to a facility and I don’t know whether I can find one that will take him, and we cannot afford it anyway. He’s on Ativan. I am just at the end of my rope. I am not a young woman and what we have been through is unbelievable anyway with all the complications of surgery that he’s had. He does definitely have dementia. He is weak as a kitten and sleeps all day, and fights demons all night. It’s an evil syndrome that’s for sure. He would never in a million years want to be in this condition.
Donna, my dad is in the same situation, with the dementia part. He is in California. After he got violent, he was evicted from 2 places. We had a really hard time finding a place that would take him. I would recommend you contact A Place for Mom (www.aplaceformom.com) and get a representative helping you (it’s free to you, as the facility pays them). They are experts on finding people in your husband’s situation places to be cared for long term or short. Ativan doesn’t work on my dad. They seem to use a combination of Haldol, Cymbalta and restraints when needed. It’s very sad. We got him into hospice too, at the one skilled nursing facility in California who would take him. It is several hours from where he had lived for the last 30 years, so no one he knows lives near. He wants to die (he doesn’t have a terminal diagnosis, other than the dementia). He also is weak during the day, but can hop up from the floor to the bed and back at night somehow. Best of luck to you!
medicines…. the right ones work wonders… HALDOL.. granny was screaming all night and day.. night terrors all day.. i was crying she was crying.. drugs.. hospice came in and saw what was happening, and said.. HALDOL.. given correctly for 3 days i started to see a difference… it was easier.. then LACUTLOSE.. pulls nitrogen from the system.. and she was almost sain again. if you have hospice ask about these two.. and she gets morphine for pain, her skin hurt every time i touched her.. so she still talks but can answer questions again.. get the right meds.. good luck.. lynda
lactulose pulls amonia.. from the body.. sorry.. haha.. sometimes we are not perfect… and its ok..
My mother is 91 years old and still in good health. My bother thinks she has sundowners but I think she just wants to move in with one of us. My husband and I just retired and travel alot so there is no way we can take care of her. We all have families to take care of. She does not want to go to a nursing home but can’t afford an assisted living. She is only scared in her home. When she goes to my brother’s or my house she is never afraid at night and is perfectly fine in the evenings. Do you think she has sundowners?? MMM
My Mother is in a nursing home and she said the lady next to her has been doing weird things at night, like accusing her of being her daughter, blocking the nursing home doorway with chairs to keep the children. My sister was told that this lady has sundowers syndrome. Now that I understand what it is I will be more understanding and listen to what Mum says happens. When you are 97yrs with a wonderful memory it is very upsetting, I will be having a word with the nursing home aout her relocation.
Hi,
I am new to this site because I never heard about sundowners until about midnight last night. My 87 yr old mom is in the hospital after having a “mini-stroke” 6 days ago. She also has stage 4 caner (breast cancer in the spine) and heart problems (now on a monitor). She called me last night terrified of the nurses, thinking they were all smoking in her room (not true, of course). She had a ct scan, which did not show anything, so the doctor said it was probably sundowners. She has not had any form of dementia, as far as we know.
She has been living on her own until now, but tomorrw we are supposed to move her to an assisted living (not skilled nursing) facility, and I don’t know wherth or not she would be able to handle it. I am worried that she will wake up in a strange place and panic without anything familiar there at first.
Since I am so new to this, and comments or suggestions?
Hi Mary,
It seems like this Sundowners Syndrome hits everyone at some stage, it is very confronting and upsetting to see your loved ones act in this way. I am the primary carer for my mother-in-law and have been through lots of episodes. My mum and I are dealing with lots of problems and try to put them into stages, it helps us to deal with all of it easier. I have found if I put the light on before it gets dark this seems to either prevent or slow the sundowners from comming on. It is worth a try, also I have tried to limit sugary foods and alcohol.
My mum has Parkinsons as well, and any change at all can onset Sundowners, so keeping routine is a big key too. Hope this is of some help, all the best.
My Dad has been in a assisted living for memory impared folks for almost five years. At first, he was a litle disoriented. The staff should know how to help him make the adjustments. It takes a little while, but from what I’ve seen, the women sometimes enjoy being with each other and make friends. You stay strong, and be patient, you are doing the best thing to help your mom.
Can someone with Chronic Fatigue Syndrome and Fibro suffer from Sundowners? Or is this a new problem I am having?
my mom had a stroke in may. we were lucky that she had it in a place in her brain that did not cause her to lose her voice and she is capable of walking and getting around. she has care givers and my sister and myself, plus a couple of wonderful cousins have been helping out. mom seems to have no idea that we are the walking zombies. i am afraid that she is getting sundowners. my mother in – law had it and it was terrible for everyone. she has trouble bathing and dressing herself. she HAS to be assisted. she is always saying that we are “doging” her ever step. well, we have been warned by the doctors and the nurses that she must not fall since she is on blood thinners and could possibly die. we try to give her as much privacy and independence that we can. mother is a terrible patient. she has never been ill so this is all new and scary for her.
I just wanted to update everyone on my mom’s move to assited living a week ago today.
As I said, she is 87, and had a mini stroke 2 weeks ago. On 4th of July, she had her first (as far as we know) sundowner symptoms. She also has breast cancer gone to her spine, and heart problems. Up until now we have worked our tails off to enable her to live in her own home, thinking it was best for her.
Well, I cannot tell you the change in my mom since her move to assisted living. She is LOVING it! She looks better than she has in years, has had no more issues with sundowning, is eating 3 square meals a day with her new friends, is going out for walks around the facility. She also feels like iniviting her old friends over for lunch now that she does not have to prepare it herself. She has plans to go to the movies, a baseball game, and a play.
I just wanted to post this because alot of us think we are doing the right thing by working our tails off to keep them in their homes, when in reality they are almost prisoners there unless we are with them. Now when we go to visit her (everyday) we are not exhausted. We are not caring for her or cleaning her house, we are there to actually just spend time with her. It has been fantastic.
Greetings everyone. What an interesting site. I had never heard of this term “sundowner” until I researched “waking up disoriented at night” on Google. My dad is 88 and in very good health heartwise. His problem is waking up disoriented on occasion. He will tell us there are people in his room and swears he has seen them. We were almost inclined to believe he was experiencing paranormal activities but he has also told us he has seen bugs, snakes and other creatures in his room and that they have bitten him. He does his best sleeping early morning until around 11 AM. When he awakes he is usualy fine and alert. He is generally well during the day and until he goes to sleep. He is totally self-sufficient and able to recall events from years ago and never forgets names.
He did have two blood clots in the brain removed about five years ago which we believe resulted from a fall and suffered a mini-stroke last year which we alsao believe resulted from a fall out of his bed. He takes around 9 medications everyday and doesn’t eat what I would consider enough food for all that medication. I wonder if all that medication and not eating right would bring some of these symptons on. He does take diabetes medication and the powerful blood thinner “coumadin,”
When he was in the hospital after the last mini-stroke he was very belligerent with the nurses at night and would call the house during the night telling us to come and get him because they (the nurses) were trying to do him harm. Again, during the day he’s normal and acts as if nothing is wrong. When he was released he had nothing but nice things to say about the nursing staff. He does remember his episodes from the night before and swears there are people and things in his room.
This is not a nightly occurence as he has many nights that he sleeps all the way through but it’s become more noticable and the pattern I see is he’s having these problems from the time he goes to sleep until the 3 to 4 AM hours.
My dad has lost a lot of weight in a very short period of time and will not eat. He has gotten very fraile and has trouble walking. As of mid-July, 2010 he has started to sleep most of the time saying that he is tired. As a result, my mom has Home Health care over a few times per week. Currently, he gets up several times during the night to go to the bathroom and has fallen twice. So it is impossible to leave him alone at any time. Since I have been here, I have noticed that he seems confused several times during the day but at night he calls several names and when you respond he asks for you to get him ready for bed (he is still calling another persons name). He is already in bed but he wants to be prepared for bed. Additionally, if you attempt tell him you are not the person he is calling he says that you are, and then asks why are you being so mean. What should I do? My mother has some health issues as well so it is impossible for her to care for him 24/7. Any ideas where I start trying to get him care?
Just wanted to say thanks for all the informative posts. I just learned yesterday that my grandmother, who suffers from a progressing parkinsons disease, is suffering also from sundowner syndrome. I was informed Friday she was admitted to the hospital and diagnosed with a heart attack, her second one. I believe some of the symptoms described here we related to the parkinsons. The hospital staff had called us to come back to the hospital as my grandmother was uncontrollable, kicking-cursing and hitting the staff trying to calm her from ripping out her IV’s. She is never like this and I was upset and suprised to hear this. She claimed the nursing staff were conspiring to kill her and it is hard to see her like that, scary even. I hope the diagnosis can be treated on top of the parkinsons disease treatments as mixing medications is always risky. Thanks again for the posts
Hello, new to this site. My 40 yr old son, 6’2″, avg wt., college grad, handsome, recently (3weeks) became a non-drinker, past few yrs was a heavy drinker, has been experiencing symptoms similiar as those described as sundowners syndrome. In the morning he’s the nicest guy you ever wanted to have coffee with and is pleasant and articulate through noon until late afternoon/early evening. At that time he begins to get anxious, somewhat irritated, volume increases, eyes become somewhat glassy/dilated. (We originally attributed this behavior to sneaking drinks but are now doubtful). In conversations regarding symptoms, he reveals that his mind starts racing and attempting to cover a myriad of subjects. A recent conversation concerned the many head injuries he has sustained over his lifetime as a result of normal childhood play and other activities. Recently he experienced 2 seizuzures with convulsions which were attributed to alochol withdrawal. The last seizure resulted in a fall that caused a consussion with associated vomiting. Your thoughts would be appreciated.
Wally, I am very sorry to hear about your son. 40 seems way too young to have to be going through all this. All I can contribute is that my dad (72) was a super heavy drinker and drug user from the 1960′s through early 1990′s. He also developed Parkinson’s. He also had a stroke in 2008. I think the dementia was creeping in before the stroke, but it became more noticeable after it. This April we had to place him in skilled nursing because he progressed to a violent combative state. The first I heard of the sundowner’s was when they told me he had it in rehab after his stroke. He would become angry, paranoid, vulgar, agitated, combative, remove all his clothes, etc in the afternoons and evenings. The man never exhibited a racist bone in his body, until this kicked in. Then everyone was suspect that wasn’t caucasian. He would have times when he thought he was the sheriff and would need to incarcerate people he was living with, asking them for their i.d., etc. It is awful to go through, and scary to deal with at first. I suggest you read the book The 36 Hour Day. It will tell you everything you need to know in dealing with someone with dementia, delirium, all that. Good luck.
Dear WallyK
I realize that several months have past since your post about your 40 yr old son. Have you found any answers? I am on this site because I have some similar symptoms as you described. I have been diagnosed with Post Concussive Syndrome. After falling and hitting my head, I immediately had convulsions causing me to hit my head repeatedly on the floor. My situation did not result from drinking or not drinking but the result of the fall and head injury could have the same result. I too am pretty good in the morning but my mind races and I talk really fast because I am trying to get everything said before I forget it. Post Concussive Syndrome causes memory problems and brain fatigue which can be very frustrating. I don’t always know that I am doing it. You may want to google it to see if this may give you some answers. I am lucky to have a Chiropractor Neurologist that caught it right away. A chiropractor neurologist is different than a chiropractor. They have to pass the neurological boards. Good luck and I hope it is only temporary.
My wife’s family on her mother’s side has a history of Alzheimer’s disease. Aunts, uncles, brothers have all contracted the disease, some at a very young age. Her older brother, 65, has been in a nursing home for 2 yrs. My wife is now 52 and is beginning to show symptoms of degeneration in the form of fogetfulness and Sundowners syndrome. I can deal with the forgetfulness, but dealing with the personality changes due to Sundowners is becoming unbearable. I try to keep in mind that her mean spirit is a function of the oncoming disease, but it’s not easy to keep things in perspective when you are being verbally attacked. The following morning, she says she doesn’t remember acting that way, but that is little consolation to me who has to put up with it.
I don’t know what to do. She is becoming less of a wife and more like a child. She is on medication, but it does little to prevent the episodes of Sundowners. Her psychiatrist will not speak to me due to privacy issues. It appears as though she is just a pill dispenser. My wife is not very cooperative as far as wanting to do something else about this. She is afraid of what is coming and would rather hide her head in the sand.
I need a support group where i can not only vent, but learn about ways to better handle the situation. Anyone aware of any support groups in N.E. Ohio?
Ron
Ron, I am so sorry to hear about your wife and her family. Very scary and sad. If nothing else, read The 36 Hour Day book, which I believe shows as recommended if you scroll down to the bottom of the page. It will help you deal with how she acts toward you. There are things you can say that will help, as well as make the situation worse, so you want to educate yourself as much as possible now. I hope she changes her mind soon about getting more help, but if she doesn’t you have to do what you need to do to keep your own sanity too. I hope it doesn’t get completely unmanageable, but if it does, you will need to make some tough decisions about living arrangements. I had to do this for my dad when his dementia and sundowners caused him to become violent and combative. We took him out of his home this April and placed him in assisted living, then he got too hard for them to deal with. We placed him in a heavier duty assisted living, then he attacked a caregiver. We finally found a skilled nursing home that would take a violent big man (very difficult to place, no one wants to risk it). He’s been there since June and is now in hospice mode. They have his meds managed and can handle his combativeness. It’s been hard, but I was left with no choice. I hope it doesn’t go this way for you. Trust in God, He will open the doors for you if you ask for His help. Best of luck to you.
Tammy-
Thanks for your comments and suggestions. I hate to sound like a whiner because i know that so many of you have been through so much worse. i hope my experience is better but am not counting on it. I will buy the 36 Hour Day. Thanks for recommending it. I am still looking for a group where i can vent or talk things out. This site is great, but it’s still not the kind of personal interaction i need. However, i am so grateful for all your input and hope to hear more.
Ron, I hear what you’re saying but I’ve behaved like that since day one of my marriage with my husband at age 25. Is it that she’s having personality changes? Is it that you’ve had a lifestyle change and now are more sensitive to her words like never before? Sometimes churches have support groups. I can tell you that I act like a nut job w/ my husband most of the time because I feel unhappy due to a variety of reasons. When for a while I wasn’t acting like that, when for a time I felt content and happy, he went and had me committed to a mental hospital saying I was acting weird. So now I’m back to being ugly to him until I can get out of this marriage and get away from him because I shouldn’t be put in a mental ward because I’m happy and it spills over into my home life….I was happy because I finished my training and was hired on at a great job. I felt glad that I was useful, and able to contribute financially. I started going back to church at that time and reconnected with friends, the whole gamut and it clearly freaked him out that I went from angry, isolated, inconsolable, and mean to sunny, friendly, wealthy and a social butterfly within a week of getting hired. Time to find a guy who has a brain and is more sensitive. He made me lose my job and my license over that mental hospital confinement which was for no reason other than he’d never seen my happy and fulfilled and enjoying my new status in life rather than bored, bored and bored and bored.
Ron,
This website was the biggest help to me, because it is available 24/7. Sometimes I and some others would be on here at 3 a.m. venting. You are not alone. Even though my 95 year old mother-in-law passed in May, the memory—and the guilt—is still very fresh. In hind sight I think she would have lived longer staying at home. (she was in a good nursing home for 6 weeks before she died) But after years of progressive illnesses, she was very hard to care for, and I and my husband were exhausted. IF YOU CAN, get as much help as you can. Sitters, family, neighbors, home health, anyone who will give you the chance to get away and freshen your perspective. You will need to find a way to some peace. I found the love I had for her, which I thought had compleletely been destroyed, has returned and I find myself remembering some of the good times. But I hit bottom pretty hard before that happened. Maybe this will not happen to you–feeling desperate and nowhere to turn–but if it does, it will pass and when you can bear no more, a solution will come to you. We all cope as best we can and I have seen incredible strength–I have an 87 year old friend who cares for her 85 year old sister–with all the love and tenderness after 10 years that she had the first year of care. She is a strong angel, and was the person I strived to be like, and fell short. God bless you and other caregivers–forgive yourself and your wife–she really doesn’t know what she is doing. Google alzheimer’s support–I think there is one in Wheeling– too far from you?
Brenda-
thanks for your response and empathy. I know i’m not the first nor will i be the last person to go through this but truthfully, that is little consolation when it is happening. It’s sad no matter what age the person is, but especially when that person is in their 50′s as is my wife. I need to pray harder for me to become a stronger, more accepting person since this is really only the beginning of the process. It would be nice to have others to talk to at those times when i’m feeling overwhelmed.
Wheeling is very far from the Cleveland area. I’m hoping to find a local group. If anyone knows of such a group, please let me know.
Hi.
My husband whi is 83 yrs old has been suffering from Advanced Dementia for about 3 yrs now that we are aware of.. I took cae of him for two yrs until I could no longer do it anymore. I swore that as long as he knew who I was he would never go to a nursing home. I couldn’t keep that promise and I felt like i threw him away. I know thats not the case but I feel like I failed him. He has many medical problems such as Conjestive heart failure,diabetis,seizures that are now under control, and stage 4 kidney failurs for three yrs now. He has no pain and for that I am gratefull…I visit every other day and I am exhausted as I have Arthritis and a very bad back.. I also suffered 2 strokes, one being about 3 weeks ago. I am now on Plavix. I know now that I have to watch the stress for myself. My husband knows me and soemtimes says he wants to come home. He no longer knows wehre that is except its a place where I am and he wants to be with me. He is in a nice place and they call him “The Captain ” as he constantly tries to tell all the aides what to do and when.. I never thought my husband would live as long as he has with 2 by-passes and the kidneys as bad as they are. I was told bt the kidney docotr he is not a canidate for dialysis and when the kidneys fail they will let him go. I was told he should have been on dialysis 3 yrs ago and he is not. I pray every day the Lord calls him home as this is not a place where he should live out his life. I feel so quilty that he’s not here with me. When and if I know the time is getting close I want him home with me and Hospice so I can hold his hand as I did my mother when she passed. Sometimes I don’t even know if the Lord hears me anymore..
Shirley
SHIRLEY, THE LORD HEARS YOU….THERES ONLY SO MUCH HE CAN DO.WE ALL PLAN THE LIFE WERE GOING TO LEAD AND THE CIRCUMSTANCES OF OUR DEATH…WAY BEFORE WE COME INTO THIS LIFE.DON’T FEEL GUILTY,HE’S WHERE HE CAN GET THE BEST CARE.YOU HAVE DONE AN AMAZING JOB,CARING FOR HIM AS LONG AS YOU DID.I DON’T WANT TO END UP IN A NURSING HOME EITHER, BUT I’VE TOLD MY SON,IF I’M UNABLE TO CARE FOR MYSELF AT SOME POINT,DO WHAT YOU THINK IS BEST….NO GUILT!LIVE YOUR LIFE,MAKE SURE THE PEOPLE YOU LOVE, KNOW YOU LOVE THEM, AND CARRY ON.WE’LL ALL MEET AGAIN ON THE OTHER SIDE,SINCERELY,KATE
Kate: I think that most of your reply is very nice and supportive, however, I must disagree with your statement “There’s only so much He can do.” That is certainly NOT true of my God! I am sure you didn’t mean it that way. Of course He can do anything and everything, according to His great plan.
My grandfather has been going downhill for a few years now. It started off simple, with him repeating stories, which wasn’t so bad, but as it got worse he began shifting from repeated stories to repeated questions amongst other problems. In this last year is where things have really gone downhill, during this time he has started to become EXTREMELY attached to my mother (his daughter) to the point where she can’t even leave a room (even if she tells him she’ll be right back) without him either yelling out her name or getting up and chasing after her just seconds later. If I try and reason with him to stay sitting in his chair, or try reminding him that she’ll be right back, I will be met with: a hateful glare, a hateful comment, a hateful gesture, or a combination thereof.
He’s pretty well confined to having to use a walker because of how weak he is, yet he still gets up and wanders off without it a lot of the time. We try to get him to build up his strength with food and drink, but he flat out refuses to eat most of the time, assuming he might gain a whole pound if he does. And if you manage to get him to take the food, he will usually only take a couple bites and chuck it in the garbage. This is extremely frustrating because he always decides he wants to ‘go for a ride’ and ‘pick something up to eat’. So basically we end up wasting money on both food and gas for the car.
It’s to the point where the only thing he eats willingly is oatmeal. However oatmeal lacks so much in nutrients that despite filling his belly, it still leaves him weak.
This all wouldn’t be so bad if not for the fact that he has become extremely hateful over these last few months, and I seem to have become his prime target for directing it at. Every chance he gets to sass me or to put me down, he takes it. He even went so far as to ruin my birthday the other day out of spite, which hurt me greatly. It’s really hard for me seeing as I used to get along with him so well, listening to his stories and so on. I feel like a puppy being kicked around in the street.
It’s also particularly stressful for me considering how much he has attached himself to my mother. It’s so stressful because my mother is extremely important to me, and it kills me to see her pushed around so much. For the past 18-19 years of my life, my mother has been taking care of family. First my grandmother (grandpa’s wife) who, despite being disabled physically, was extremely sweet and loving personalitywise. About 4 years ago she died. Promptly after that my father was diagnosed with kidney cancer and died 6 months later which tore my mother to shreds emotionally. Following my father’s death, my grandmother from my other side of the family began the downhill spiral of dementia which ended a little over a year ago. Despite how stressful the time with that grandmother was, I can’t help but notice that even she was easier to deal with than my grandfather now.
If you could possibly give me any tips for how to deal with this, I would appreciate it. I’m just at my wits end and don’t know what to do. I find myself crying practically daily anymore.
Karen, please read the 36 Hour Day (it should be showing at the very bottom of this page). It will help you deal with the difficult behaviors and the hurt they have and will cause. My dad is the same way, but he got really combative and violent so he’s in skilled nursing now. He does much of the same thing. If your gp is wandering, on top of all the other stuff, i think it might be time to consider a placement outside the home, if that is an option. Best of luck to you and your mom!
My dad has dementia and after dark gets very combative and cannot remember what when on today or yesterday. The next day he can recall things that he did the day before but very little of the night before. He sleeps until 11am every day, is 87 yrs old, lives alone after being married 60 yrs. and lost his spouse 3 yrs. ago. Still mourns and cries about her each day. He is on meds , however , shows continued degression.
Just found out, that my mom, might have sundowner’s syndrome that I had never heard of before, until a friend of mine mentioned it. My mom is in a nursing home, and it seems at night she is usually confused. She has a bad kidney infection, and she needs dialisyis, and she is 85 yrs old. She will forget where she is, she says things like, where am i? Is this your house? Where we going? When she was in the hospital she did this, but she said that she left the hospital, and she went to the nurse’s house, and how pretty it was-boy that thru me for a loop?! All these things seem to happen at night time. She will always have infection because of the UTI, and bad kidney problems. I never knew, that an infection could cause so many different problems with the memory. My mom has been sick since september, and it has been a long haul. Im still trying to grasp everything.
We deal with korsekoph dementia and it is awful the calls we get at night.
some from the dementia and some from the “medication vodka”
we say he sleeps all day to bother us at night
we laugh but it is not funny and you get no help
If someone can dress and clean and cook, then they are ok I guess
Tell me that at 2 am after about 20 calls.
Lila, tell me about it!! I think the phone calls in the night were the very worst part of my dad’s situation. The other stuff I could deal with a lot better than when they would call me, and THEY were scared because he was walking down the hall naked telling them he was looking for a weapon so he could hurt them. So glad those days are over for him. He would have been horrified if he knew he was acting that way too. Dementia and the like can be so very cruel. Good luck to you!
My father-in-law was recently diagnosed with dementia. He has fallen twice at home and both times couldn’t get back up or walk without help. The second time the dr. decided to keep him in the nursing home. He is 81 and lost his wife in April of 2010. His confusion didn’t start until after the 2nd fall. It’s mostly just getting the time of day wrong, am vs. pm, which we thought might be normal since he’s not near a window. But once or twice he asked for his wife. He can get dressed on his own but the nursing home and dr. suggest assisted living. We’re waiting for a room right now. My problem is that he seems so normal 90% of the time and I’m worried that we may be ‘committing’ him prematurely. But the nurse has told us that he gets undressed and dressed 5 to 7 times during the late night, and sometimes wonders the halls. I’m conflicted on keeping him in the home and after several months, selling his home. We have seen 2 attorneys and they both agree to selling his assests to pay for the care.
Sharon,
I agree with the attorneys. Assisted living is really pricey, and you probably already know that medicare/medicaid do not cover most places. Medicaid covers approved skilled nursing facilities. If he is a fall risk, it is sometimes harder to place him, as many assisted living facilities are for the more ambulatory folks. Of course, the cost goes up the more help they need. If he is wandering too, he may progress to the point of needing a locked facility. You have probably already discovered that it is harder to place men than women. I will suggest to you the same stuff I suggest to a lot of people on here: 1. Read the 36 Hour Day book (see bottom of this page). It covers all aspects of caring for someone like your FIL. 2. Contact A Place For Mom online or in your area. http://www.aplaceformom.com/ Their consultant will help you for free and will be experts in all the available places in your area. They were of supreme help to me with my dad’s situation over the last couple of years (which you can read about throughout the various threads on here). 3. Contact the local long-term care ombudsman in your area. They have great resources. 4. Make sure you are familiar with Medicaid guidelines about selling assets and stuff, if you ever think there’s a chance he will need government aid. They have some pretty strict rules, and the documentation requirements are tedious and lengthy. You will have to go back 30 months from when you apply, so keep EVERYTHING. The senior consultants mentioned above can help you find someone (or they may be able to help you themselves) who can help you with Medicaid (Medi-Cal in Calif.). 5. Call on the Lord for help, and pray without ceasing. My faith is the only thing that brought me through my dad’s time. Don’t feel guilty about the choices you will have to make. You are not “committing” him, you are finding him the care he needs. Sometimes there isn’t a right choice, just a best choice. If he is already wandering, dressing obsessively, and thinking his wife is still alive, you are most likely not acting prematurely. Especially if his dementia is of a progressive nature. It can move quickly, so it’s best to act now, like you are trying to do. My dad went from normal 90% of the time to not knowing who I was or caring about the future in a matter of a few short months, then he died another 4 months after that. His case moved quite rapidly, and I hope you have more time than I did. These diseases are so insidious and unpredictable though. Good luck to you! Call on us when you need support.
Sharon, I hope for your father-in-law’s sake you put him in assisted living. My mother, with dementia, who just died last month, went from a nursing home, where care was inadequate and she had nothing to do, into a beautiful atmosphere that kept her active and happy until the time she died. She was allowed to have FUN again. The aides were wonderful and took much better care of those who needed assistance as opposed to those at a nursing home who never even answered a call button. Just my thoughts. Give him some happiness!
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Mary, may I ask long your mother was in a nursing home and assisted living? Luckily my FIL just got moved to assisted living. He is confused right now, but also stays quiet most of the time. I do think the aides are great and realize that most of the time he thinks he’s fine and doesn’t understand why he had to stay there. No one knows how to explain this to him.
Sharon: After being over-medicated by docs, she was in a nursing home because she had stopped eating and was hallucinating, so they put a feeding tube in, which required the nursing home. She was in the nursing home about three months until the feeding tube could be taken out, then back to assisted living for the second time. She then lived in assisted living for the next two years. She stayed quiet for a long time, also (maybe 2 months), then the next thing we knew, she was playing bingo, listening to entertainment, attending church services, and looking forward to every meal of the day in the dining room. Pretty soon she forgot the house she had lived in for 50 years and actually said more than once that she LOVED the assisted living facility; that it WAS her home. It was so hard leaving her there (but better than the nursing home) but after hearing her say that, we were comfortable and happy with our decision and her happiness.
And, if your father-in-law was a veteran, there is financial help available too him as far as his “care”. Because my mom was a wife of a veteran, she qualified for $1000 a month for care.
No, my FIL was not a veteran. Another stresser for my husband, having to handle all his dad’s bills plus looking into selling his dad’s house in the next few months to pay for his care. But this morning my FIL was found on his bathroom floor after taking a fall. He is ok now,but still no one knows why he falls. So sad.
I am so very glad to have found this website, for 10 plus years now I have had so many questions about Sundowner’s, which no one could really answer for me. After reading comments, posts and thoughts, I feel as if I finally got the information I so desperately have sought since 1997. My story started similarly with my great Grandma when I was in my late teens, she went for a routine heart exam, was disgnosed with some congestive heart failure and admitted to the hospital. Up until that day, she was making food for herself, cleaning house, talking on the phone and paying her own bills (at age 94). After she went into the hospital, she developed Sundowner’s, which began as confusion with the time of day and progressed to forgetting our names, and where she was. She began thinking she was being put on the roof at nighttime, and thought it was 1940 -conversing with a long ago deceased friend. I asked the doctor who took care of her, and some nurses about this syndrome and never could get a straight answer. They simply told me things like “it happens with the elderly” and it is a form of dementia, etc..” I spent some time researching and reading books, but hadn’t encountered anyone else who’s relative had had Sundowner’s and Alz. occur like this. This website has been a true blessing to me not only by answering my questions, but letting me know I was not alone with what I thought was a very unusual situation.
Sharon, I hope for your father-in-law’s sake you put him in assisted living. My mother, with dementia, who just died last month, went from a nursing home, where care was inadequate and she had nothing to do, into a beautiful atmosphere that kept her active and happy until the time she died. She was allowed to have FUN again. The aides were wonderful and took much better care of those who needed assistance as opposed to those at a nursing home who never even answered a call button. Just my thoughts. Give him some happiness!
This site, is a prayer answered. About 2 years ago, us siblings, notice some changes in my dads behavior and memory struggles at the age of 88. The real shocker was 18 months ago my dad and I cut down a tree in his yard , he has wanted to cut down for 2 years . I did all the cutting and dropping the limbs down to the ground , as he hauled them to the driveway a few feet away, and trimmed the small limbs off the branches and he stacked the branches. The next day he woke up to see the tree cut down and asked my mom who cut the tree down , and was very angery. I came over that am to grind the stump . As i walked into their house, he was standing by the window looking into the yard. He turned to me and stated, who the hell gave you permission to come into my yard and cut my tree down. I was shocked and confused. He got into my face, clinched his fist with anger. I said to him. You and mom wanted the tree cut down dad. He stated the hell I did. This caused me to stay away from their house for almost 2 months. Me living only 2 city blocks from their home was ideal. I could be there for them anytime they needed me. I shut down after the conflict with my dad. He was taken to his doctor days later to lean, he was suffering from dementia. Up to just 7 weeks ago he was mostly managing to do things on his own with the help of my 84 year old mother. He walking on his own , doing dishes. letting his dog out and other things. He would wake up in the mornings asking my mom where he was. thinking he was in a prison camp and very confused. 7 weeks ago he was admitted to the hospital for back pain, which made it very hard for him to get out of bed and walk.. In the hospital he was very combative and verbal to the staff , thinking he was at home and they were in his house. he would not sleep but maybe 1 hour durning the night. My dad, a laid back person , never hit, swear or disrespects women. was doing it in the hospital, even striking out at my sisters. He was given meds to slow his behavior down which worked sometimes. After 4 weeks he has now been in a nursing home going down hill. I wore my work shirt with my name on it everytime i go to see him. He knew me every time , until 3 days ago. I walked into his room as a CNA was changing his shirt for him , I said hi dad , and he turnned to look at me and stated who are you. I said your son dad , and he said you look like Binladin. May I add i don’t even have a beard. I told the CNA I will come back into the room after she was done with my dad. He was asleep 10 mins later after i entered the room. when he woke about 45 mins later he saw me, was confused , but smiled and said great to see you. I see in him, alot of what i have read in this site. He does have begining stages of parkinsons. I noticed yesterday. I stopped at McDonalds to get him a breakfest tray. He had problem holding a fork, getting the food into his mouth, and hard to lift his cup, And hard to swallow his food. For some other reason he likes to take his cloths off during the night, and try to get out of bed. Now he is in a bed that has a concaved mattress with high sides and the bed is lowered to floor so he can not get out or even sit up, to prevent him from falling. He is now wheelchair bound, and very confused. He knew who I was yesterday. Today I don’t know what to expect when i go there to see him. Again i will get his favorite food, at take it to him this morning. It is very hard to see anyone go threw this. I ask God to take him , before he suffers more. I want to hold the good memories, which are very strained seeing my dad like this. I want to thank all of you who have shared your stories on this site. You are a blessing. You have given me some comfort in understanding this sickness…
Now that, Keith, just broke my heart. Make sure he is not over-medicated, which happened in my mom’s case. She went from the ability to feed herself to not being able to after a hospitalization where she was loaded up with unneeded drugs. After another hospitalization when she was weaned off those drugs, she was again able to feed herself. This truly is the most disturbing disease in the world, and to have to watch our parents go through this is horrific. My heart goes out to you.
Mary , Christi, Tammy and Brenda… Thank you so much for your replies to my post. Yes it is a very hard struggle, to see my dad go threw this. Mentaly , I am a train wreck.
Keith I can relate to your story. My dad will be 88 in about two weeks. He has had Alzheimer’s for about 10 years. The last five have been a very slow steady decline. I admire you showing up even when he doesn’t know you are does things that don’t make sense. My brothers have a real hard time seeing our dad like that. He lives in an assisted living for those with memory imparement. I live about 70 miles away so I go once a week and make sure he is cared for. He is getting awesome care and we will keep him there until we no longer have the funds to do it. Then it will be nursing home. I pray that God takes him before that but you know I believe he strenghtens us for every stage of the journey so if we do have to move him, we will and the really good thing is that this is so much harder on me than it is on him. That is the place that I have to go when I get down about it. I have to remember that he is not suffering. He doesn’t remember that I have been to visit him five minutes after I am gone, but I remember. Stay strong friend and keep the faith in the one who is in control! His plan is best
Keith, wow does your dad’s situation mirror my dad’s. I am so sorry. I know you will never forget the things he said and did, and may continue to do. That hurts a lot. I was spared a lot of the interaction you are facing because I live in another state, but the phone calls would come in the middle of the night (I was my dad’s power of attorney, even though I wasn’t nearby), telling me he was threatening people, attacking people, naked, etc etc. Sometimes they would even tell me they didn’t know what to do, like I knew what to do either? By the time we found a place that was willing to take him, he was ready for hospice care. My dad’s illness progressed pretty slowly the first year and a half (although he had Parkinson’s since 2000), but in April of 2010 it really ramped up to much of what your dad is going through. My dad passed away in late October, but it was a blessing because he was suffering so much. I wasn’t able to speak with him the last 4 months of his life because he couldn’t do a phone conversation anymore and didn’t even realize he had a daughter. It is truly tragic what these diseases do to our loved ones. I especially found it hard to see the changes, like you said about how he was laid back and all that. My dad was never prejudiced but soon thought any non-white caregiver was a criminal or a communist. Keep holding on to your faith in God. He is the only thing that led me through that miry swamp, and He will continue to do the same for you. I had to rely on Him for every decision, every day, and there were many times I had no idea where He would take things. But it’s over now and my dad is with Jesus. Best wishes for you and your family. If you haven’t read the 36 Hour Day (see bottom of this page), I highly recommend it.
Keith, your recent post of Jan. 23 brings back vividly our caring for my mother-in-law. She passed away in May after staying with us for ten years, minus the last 6 weeks in a nursing home for swallowing therapy. She had refused to eat, drink, sat with her eyes closed all the time, did not know us, was hostile–all your dad’s symptoms. On the day we were going to sign the papers to bring her home she passed to the other side. It may not be a comfort to you now, but I can say this: God will not give you more than you can bear, and when you can bear no more, He will take your burden. He did for us as we were franticly trying to figure for the umpteenth time how to help, what to do. I know exactly where you are, having been there myself. You are a good son. You do all you can. God bless you and give you strength and peace. You have many people on this support line who send out their good wishes to you and your dad.
Hi Keith,
We saw my husband go downhill and my son can’t even remember the way he was after seeing him decline so far. He was such a handsome, rosy cheeked man with soft brown eyes. He died after a year, never complaining. Everyone has their heartaches and trials. So sorry for yours. I just put the last valentine I gave him on the mantle.
Keith.
I too am caring for my father with alzheimers. I took care of him in our home after my mom died and it became too hard to handle. He is now in a nursing home. It has been six years since my mom died and he keeps declining so slowly. I try not to expect anything and ask God to prepare me for where my Dad is that day when I visit. I do love on him when he will let me. Sometimes he doesn’t want to be touched. Sometimes he won’t let me go and wants me to sit by his bed for hours. It is heartbreaking and it bothers me more sometimes than others. I am thankful for each time I visit though. I am thankful that I can serve him in this way. I know he wold not have wanted to be a burden on me, that was the kind of man he was. So, now I can serve him and he doesn’t worry. His needs are simple now. I wash his clothes. He is bathed, fed, and changed by the staff where he lives. He sleeps about 6 to 7 hours a day and all night too. One day this season will be over. I don’t know if I will be sad or if I will be thankful that he is in heaven. That’s all for now. Stay strong
Does anyone have an experience with driving issues? My FIL has had issues with getting AM and PM mixed up and has gotten lost as a result of driving in the dark (both places he was driving to he was unfamilar with). He seems to have worsening symptoms in the evening. He lives in a very small town and we live 3.5 hours away, so it makes it very hard. We took over his finances 1 year ago because he had a huge mess. Now, we give him a monthly stipend for groceries, etc and pay his bills. Every 3 months or so, he complains to ppl that he doesn’t have any money, where in fact he has 600% more than he did 1 year ago. I sent him his balance monthly via a letter in the mail, but I don’t think that’s enough.
We’ve had him stay with us for extended periods of time, but we have 3 children (2 elem + 1 high school) and it’s so very hard for me to care for him + be a mother to young children + work. Sigh…it’s so hard.
He has been diagnosed with dimensia / sundowners and seems to be progressing. He refuses to take the medication the Dr has prescribed that may help him with his memory (at least in the short-term).
I am not taking care of my mother, father, nor any relative of mine. However, I am caring for a sweet lady from my church who has Alzheimer’s. I was asked today if she suffered from Sundowner’s syndrome and that is what brought me here. I have been taking care of my patient for almost 3 years now. My partner and I live with her 24/7. I do get a break on the weekends when my daughter comes to relieve me. I am positive after reading the comments on the website, that she does indeed suffer from Sundowners. She gets scared in the evening, tells us she doesn’t like to be alone, she asks to go home, and will not eat a good dinner if we are in the house. She is on the meds for Alzheimer’s and they have added an antidepressant to help her sleep. We are up atleast every two hours every night. We have rails on the bed and a bedside commode. We keep a lamp on in the room for her. We have purchased a baby monitor that actually has the tv monitor, but now I never sleep due to watching her to make sure she is okay. She has had the spells with biting, hitting and spitting. She spent a week at a behavioral place to ween her off of some of the meds she previously was on. Over all during the day she is a whole lot better, but our nights have not improved at all. She has come through the living room with no clothes on and my boyfriend would just shake his head and then help me get her dressed back. She has truly been a blessing in my life in more ways than one. I intend to purchase the book The 36-hour day. I am so glad I stumbled upon your site. Each of you are in my thoughts and prayers. May God Bless each of you. This is certainly one of the hardest jobs I have ever had in my life, but too, she has taught me so much over the years. Oh how I will miss her when the day comes that I am no longer able to care for her.
Hi my name is LaGayla,
My mother was diagnosed with dementia over a year ago. I can not explain to you the huge change that has taken over. My question is when does dementia stop, and Alzheimers start. I realize that they are one and the same. But is dementia more mild, than alzheimers.
One year ago we were told the news, and today we fight to understand all that is taking our mother away. One of my sisters told me about Sundowner’s. I believe with all my heart that this to has my mother. She can awake at 5am, go all day. And when the sun goes down she has more engergy than sixteen mules. She is up all night, that is when she is most likely to wander off somewhere. Always looking for her home by the river. My mother has lived in the same home for over 15 yrs, and never has she lived by a river. My mother hides everything that is important to her, sixty times a day, in all new area’s. You spend, your day right by her side, watching everything. So you will know where to look for whatever. She reminds me of the Rabbit on the commerical it just keeps going and going. She will come up with the most off the wall stories, and your wondering how in the world could she even come close to forming that idea. Also one major issue with her is trash, my mother will put anything new, good in the trash. I can not tell how much has been lost for the very reason. My family is huge, my mother has nine kids. And yes, its hard to take care of one person, nine different ways. I love my mother, and my family. But one thing concerns me the most, how can you help someone to understand whats happening to them, how can you take away the fear they have, when they have been diagnosed with dementia/alzheimers….
Yes, the book 36 hours a day, I will be reading….
My boyfriend’s father is 85yrs old very healthy with drinking problem ,his wife died two months ago at nursing home from dimensia. He enjoyed his life without his wife because they had a very bad marriage.Last two months only thing he did was drinking and sleeping. Now he can’t even walk and has to wear diaper all day.He hired 3 young ladies to take care of him ,But since he sleeps most day from drinking,those ladies collect money from doing nothing. Now since they can’t move him around he started to have bedsore with filthy sheet since nobody can pick him up to change bed sheets. My boyfriend took him to veteran hospital,thinking they will keep him,but they sent him back by taxi after 3 days because he refuse physical therapy ,other than he is healthy beside weakness..My boyfriend though he could put him in nursing home with power of attorney.Then he found out medical decision is not included.Those 3 ladies take so much money out of this old man so much monthly,more than expensive nursing home.He doesn’t want to give up these ladies who are from church ,not even pro. We are stunt this evening. Those 3 young ladies will comeback again since he refuse professional help.What can we do. my boyfriend is a only child. How can we put him in nursing home. Now I am wondering how long this man can live with drinking and wearing diaper all day. By the way he felt few times last couple month.Any advice,please.
My Dad is 74. Over the past several years my Dad’s memory slowly began to slip. We didn’t really notice the beginning of it until now, as we began to think back. Over the past year it got more noticeable… the past six months was fast… and this last 2 months was a landslide! My dad lost “his” father (who had dimencia of sorts), then his best friend who was his younger brother Ron, and then the love of his life left him (not my Mom – they divorced years before). After that Dad was diagnosed with prostate cancer and at that time he chose laser treatments instead of chemotherapy… two years ago he lost his Mother who had alz…. last year he lost his grandson (my son) at age 28.
Keep in mind that my Dad has NEVER gone to the doctors unless something felt seriously wrong… so after the laser treatments for the prostate, that was it, he never went back. He never got his PSA’s checked. Anyway… he’s also diabetic, and about 2 weeks ago, he was slurring his words, complaining of being dizzy and said he couldn’t see right. My baby brother who lived 3.5 hours south told him to eat something. When Dad didn’t answer the phone ten min later, my brother called off work and drove 3.5 hours north only to find an ambulance in the drive… somehow, with a blood sugar level of only 27, he managed to dial 911 after falling and not being able to get up off of the floor.. Thank God for small miracles huh? So since then, we’ve discovered through a battery of tests that not only does he have gall stones, that his bladder isn’t emptying out completely because the urethra is fused with the prostate…. but the kidneys are also not functioning well, he was severely dehydrated and his liver is only partially working. The doctors said that his lack of a proper diet and lack of liquids could have caused a lot of this very recently – Now he is diagnosed with Sundowners. He gets very very confused at night and gets very combative, calling his sons the “enemy”, swearing at them etc… My brother’s just say things like “yeah I know, I’m a (&^%@#$, now work with me Dad”. He wasn’t like this two weeks ago!
We are all a mess!! He will be living with my brother in central wisconsin now – and he doesn’t realize he even has a home anymore, so that’s actually a good thing as he would NEVER agree to move in with anyone. The brother in southern Michigan went up for about ten days to help… he has gone back, now I’m going up from Texas to help for ten days…when I get back the brother from Montana will go out…and when he is done the one from southern Mich will go BACK up and use the last of his vacation… 2 reasons, to get “me” time with our father (who also has bone cancer in his pelvis)…and to help the baby brother who is saddled with the whole thing and not getting a wink of sleep!!
I want to thank you ALL for your posts!! I have written down the drugs mentioned, the 36 hour book that was mentioned as well. We are also looking into the veteran’s admin, his insurance, and medicare to see what can and can’t be utilized for in-home hospice. My dad loves us four kids…and especially the one who lives in wisconsin… and though we may not always be familiar to him as this progresses, at least we’re all familiar to him NOW… we will put off assisted living after all else is exhausted.
and no, the cancer will not be treated as it was against my Father’s wishes over ten years ago.
Paige
I think we are in the same boat…It is very hard understand what direction to go to help a loved one in this situation. My dad has sundowners very bad and the nursing home asked us if we can stay for 2 days to keep my dad awake during the day so he will sleep at night . Because the nursing home is under staffed on 3rd shift it is very hard to care for him when he is awake. He is wheel chair bound now and tries to get up all the time and falls. My sister is coming from Texas on the 12th of Feb. to try and work with my dad on sleeping at night.. It is impossible to try and keep him awake during the day, when he does not sleep at night . I have tried. He thinks the nursing home , is his house and yells at people , telling them to get out of his house. He strikes out at people there. He has very good days to where I can understand him clearly and feeds himself and other days wow a big change. It is a roller coaster ride. I never know what to expect when i go see him. Just keep your trust in God and work threw him . I may not have any answers for you but i want you to know , people do care.
Keith, have they suggested maybe getting him a geri-chair? they look like the one in this link :
http://www.scooterlink.com/index.cfm/method/product.details/id/convalescent-recliner-525/Winco-5251-Convalescent-3-Position-Reclining-Geriatric-Chair-with-Tray.htm
and many come with straps to secure them from getting out of them. i think you can even rent them.
when my dad became wheelchair bound, they got him a reclining wheelchair, since the transfers were really difficult and he never wanted to get into his bed. that might be another option, if they can secure him properly. he was also very combative, awake at night, all the same stuff. they just let him sleep in his wheelchair whenever possible.
maybe one of those, with the right combination of sedatives, could alleviate your problem. like you said though, no easy answers, except to rely wholly on the Lord. He knows the right thing for your dad. best wishes to you both.
I didn’t read every single post. Have there been studies where adding plenty of light at sundown can help a patient?
My mom has advanced COPD. She lives with me and my husband. She became very ill last May after getting pneumonia. While in the hospital she was offered to have Hospice take over her care. Since she is on a limited income she chose to do this because they pay for her meds that relate to her COPD. They put her on morphine. She had a reaction to the morphine and was completely in a coma like state for a week even through I had them quit giving it to her after 2 days. I believe that during that time she must have had a stroke because now she does not walk with out assistance. She is basically bed ridden and needs 24 hour care which is provided myself and my siblings. The past few months have been awful for me at night. She fights and argues with me. She wants to know where we are moving the house to. What am I doing to the doors and why am I moving them? She has a little boy that is sleeping with her every night and wants me to tell her who it is. (no one is sleeping with her) She has accused me of hitting her, or tells me she hates me. She will have me up 7 or 8 times in an hour. During the day is is more coherent and with it. Is this Sundowners?
mel, sure sounds like it. sorry to hear this, but you came to the right place for support. read on, my friend. good luck with your mom.
Thank you for the responses.
Since my last post… my Dad has improved a lot. He’s much more aware during the day than he was, and much more coherent at night, although evidence of a dimming mind are definitely present. Only now we’ve come across a new problem… he’s aware that he has his own property! It took us the last entire week, of telling him about 30 times each day that he only had ONE property, and not three or four! He thought we were lying. Now he may not totally believe us, but he’s accepted that he has one property. He wants to know why he’s being held here and not allowed to go home… he said when he gets back up there (my brothers promised to take him up LAST WEEK so that he could physically see that all of his things are still there and not stolen), that he’s going to refuse to come back, and is going to drive his van around town…None of us are sure how to approach this.
The second we tell our extremely stubborn Dad that if he’s caught living alone, that social services will whisk him away to a nursing home, seize his property, and get my brother’s power-of-attorney revoked for lack of care through the courts (which is all true)… he will get very mad, and start walking down the street the minute anyone goes to the bathroom! We know him well, and he will NOT take this well…worries me. We can’t “not” tell him either…we are just not sure what to do.
I feel bad for my brothers since Dad is blaming them… they are strong willed as well – but I don’t care who you are, you know that foul words from a parent hurts just the same.
I guess I’m not really looking for answers, so much as needing someone to vent at.
Thanks for listening.
Maybe get one of his doctors to sign a letter of incompetency? Then your brother with the power of attorney has power over his care, treatment, where he lives, etc. Hate to suggest that, but…………
Don’t know what to do. My dad has early dementia and we just put him in an assisted living home. He wasn’t happy living with my brother or my sister. Now we think he has Sundowners Syndrome. He becomes very erratic and agitated and begins to call us constantly from about 4 – 11 p.m. and then again around 5:30 a.m. demanding to go home. He gets really nasty and nothing we say makes him feel better. We feel bad not answering his phone calls but it’s so upsetting.
My mother in law has since passed last august, but we can not say enought about haldol she got to help with sundowners. What a difference the right medicine made. Talk to your dad’s doctor about a medication for this. If you don’t get control some assisted living homes can not handle them. my mother in law never slept, cat napped.. but never slept.. so we heard her all night , and we were up much of it with her. We understand, You can not handle the verbal abuse and make good decisions for him. HE IS MISERABLE, It is not fair for him not to get the right meds to help him feel better. When he feels better you will too. he may complain about the meds, but they will help. It took a week or so on the meds, till we had a great difference. One day at a time.
Cindy, my dad was in the exact same situation. Please try to read the “36 Hour Day” book. It helped me a lot. Also, if you have faith in the Lord, never cease to call upon it. It’s the only thing that got me through without having a total breakdown. I hope this phase doesn’t last too long for your dad. For mine, it lasted for about 2 months (and that was the worst part – the phone calls, especially after bed time), then his dementia progressed to the point where he didn’t know who i was anymore, and couldn’t use the phone anymore. His brain couldn’t process how to have a conversation on it. So no more phone calls. We had to place him in 2 different assisted living homes, until he attacked a caregiver. Then we placed him in skilled nursing. He rapidly progressed to needing hospice care, and died in October. I hope you find the relief and direction you are looking for. Pray a lot!
Thanks you for responding to me. Last night, my dad tried wandering away from the assisted living fac. They put a wrist band on him. Told him they couldn’t let him stay there if he wandered or wouldn’t wear the monitor. At midnight, he took his razor and cut it off! They said they had never seen a monitor cut off before. Looked like a rat had chewed it. He was very proud and called himself a hero! He feels he has rights. He tells us that when we die and see God, we’ll have to explain why we did what we did to him. He know has to live in a lock down facility for Alzheimers patients. Makes me very sad because my dad is such an educated man. He is a retired pharmacist. He’s also refusing to take all his meds.
Thanks for the advice.
if he were at home, he would still be wandering, and you would be incharge of handling all the shifts, they have a team at the home. I am surprised he didnt cut himself doing that. but if he gets proud of himself, you get proud of him.. for what time he has left, dont fight, if possible, you CAN NOT reason with him.. so be his friend, if you cant agree with him say nothing… if he says i am a hero.. say you always are with me.. the home can be his caretaker, like parents.. you be his friend.. let them be the bad guys,you be the good guy. take him chocolates, or peppermints, take pictures, not in frames, you can hang on the walls, or frames without glass.. get the easy off tabs and hang some, make it more like a home and less like a lock up facility. My mother in law was a charge nurse for 30 yrs, she was in charge of the entire hospital nurse division at one time in virginia.. we know.. dont look at him and expect him to respond like dad.. he is sick .. remember that and dont get mad at him.. he is doing the best he can… he has to live in that body you are so frustrated with, he is frustrated with it tooo. take a meal with you.. play checkers.. you cant make the disease go away, but you can make a moment in time better… keep in touch with his doctor there, haldol comes in liquid form, it can go in orange juice, I wished i had tasted it so i could tell you what it taste like, but i didnt… hahaha.. he is your special needs DAD.. love him, agree with him, you can say.. I wished you could go home too, the doctors said not yet… I hate it too, I am powerless dad, I am sorry.. i love you.. want to play checkers.. this kind of coversation will take a while to get used too, but it helps.. blame the doctors not him.. not the disease.. he cant understand that.. he can understand doctors, he worked with them all his life. .. make out it is a recovery center. . when they say he can go home he can.. but not yet.. now dad i know you have to be in this recovery center till you are better, can i bring you anything tomorrow..
does he have a dvd player in his room.. those are important.. by LUCY SHOWS, and watch him laugh… roy rogers,. gaither gospel singing.. you have to make your fun times now.. you will be fine, it takes 30 days before something becomes a routine in the alzheimer brain.. you can do it.. each day will get better.. hold on… he is safe.. God sent you angels .. the home if filled with good people who want to help and are part of your team…
Wow, Lynda, you said it ALL! And I will totally agree, as we did with my mom, that when she wanted to get out of there initially, we DID tell her we had no power; she’d have to talk to the doctor; that they were only holding her until she was medically able to leave. Pretty soon, she totally forgot about leaving. This all changes so much from day to day; no one ever knows what to expect. Eventually, she didn’t WANT to leave.
All great advice Lynda, thank you. Good point about the glass frames too. Before my dad went to skilled nursing, he broke furniture and tried to break a window (luckily he just knocked out the screen). He would also put all his stuff in a big pile in the middle of the night and say he was told he was leaving, so he was getting ready. He did cut himself up while doing all this. I totally believe that he cut off the wrist band, but i question the fact that they let him have access to a razor in the first place (scary!). He had a big thing about his rights too. He always wanted to talk to the sheriff, police, state department, whatever. He would even think he was law enforcement at times, and interrogate the staff. When he still could use the phone, he called me asking why i did this to him, and i reminded him of the power of attorney. He made them go bring it to him to show him (not that that helped). So very sad. My dad was really smart too, and was an avid reader. It’s really hard to see the drastic difference between what they were and where they are now. Feel free to vent on here anytime, we all get it. Oh, and one thing I did both verbally and in writing was to thank and encourage the staff. They don’t get a lot of that, and they really need it. The things they see and have to do….
And, Meds may not always work, but maybe they will help… Lactulose.. ativan, try different ones, till something helps, and go with your instincts.
Hey, is anyone else seeing some of these patterns??? My dad is 81 and the neurologist can’t decide quite which dementia he has. Possibly Parkinsons…. no, maybe Alzheimers…. nope, now it’s vasculaar dementia… yep, that’s it! He had surgery to have his gall bladder removed 3 years ago. In the hospital I couldn’t communicate with him prior to the surgery. He was so doped up that he couldn’t understand me and could not speak. They claimed that he was in so much pain that he was heavily medicated ( Morphine??) to keep him calmer. After the surgery, he never really recovered. The neurologist claims that an MRI shows that he had some strokes, possibly due to drugs at the time of the surgery or…. what? Over the last 3 years he has become more like an Alzheimer’s victim. Memory loss, some stroke like speech loss, dressing muck ups, and finally we are seeing the Sundowners syndrome. And, he was on medication for heart problems… Atenelol, and Metformin for diabetes. Plus various other medications. I am seeing the diabetes reoccurring in this website, plus the heart problems, plus many, many incidents of hospitalization that turns into dementia symptoms quite readily. What about anesthesia?? It would be fascinating to see how many of our loved ones went in for surgeries and came out with dementia. And, YES, I think the entire world is overmedicated. Dr.’s seem to prescribe drugs and make referrals to other Dr.’s. I think they are becoming less and less able to actually HEAL anyone. It is sickening and frustrating. And once you are put on a medication it is very difficult to remove you from it. No Dr. wants to remove anyone from a medication they are currently taking. So…. maybe if enough people begin to discuss their situations with each other we may begin to understand more than the medical profession. Is anesthesia something to look at?? Are alot of dementia patients currently taking alot of the same medications for diabetes and heart problems? Is there a personality that seems to magnet up dementia? I don’t think I have ever read anyone who says, ” my dad was always a real jerk and cruel to animals and now he has dementia!” Most folks write about the nicest, sweetest, caring and intelligent people who end up with Alzheimers. Just some thoughts…. thank you to all of you who provide information and solace.
My dad went in for back surgery in fall 2008, and came out with a stroke. We suspected that it was because they had to give him platelets because he has ITP (low platelets or whatever). They apparently told him of the risks, but his back pain was severe so he went ahead. The back surgery was highly successful, but he was never the same after that. He had been diagnosed with Parkinson’s in 2000, and looking back, we think the dementia actually started before 2008. We didn’t see it before, but can now. Problems with dialing the phone, little things, not keeping up the house when he was fastidious before. He was an avid reader, very intelligent wordsmith. After the stroke he couldn’t read and had very frustrating speech problems. The dementia progressed, especially rapidly the last 6 months of his life. He passed away in October. He wasn’t diabetic (surprisingly) or a heart patient per se, but he was on around 16 different meds for various issues, and we also thought those made the problems worse. By the time he got to see a geriatric specialist who tried removing and changing meds, he was too close to the end to bounce back. It’s just an ugly situation all around for anyone who gets any dementing illness. His cat scans also showed some older undiagnosed strokes. After reading the 36 Hour Day, and talking to many people with a lot of experience, I learned that heavy alcohol abuse can lead to a really angry combative dementia, which my dad had for sure. He had been sober for like 16 years, but it still took it’s toll, along with heavy drug use since the ’60′s. Hope it helps that you know you’re not alone and your dad’s situation isn’t terribly unique. Good luck!!
Fortunately I have never had to see a loved one go through this, but I was a caretaker (hired) for 22 months for a lady with dementia. I am also a psychiatric nurse.
Reading these comments has been so inspiring because of the love all of you have even in these more-than-stressful circumstances, and your faith in God that is the source of your strength. When the going gets rough, just break the day into segments that you can handle. If taking things a day at a time is still too overwhelming, take it an hour at a time. Or two minutes at a time. Ask God to strengthen you and see you through whatever portion of time you think you can bear. “God, just please see me through the next 10 minutes because I need you and I can’t do this by myself.”
Haldol is one of the medications mentioned in these comments and it can be very helpful. It does come in a liquid which is tasteless, so it can even be added to water. That makes it very do-able for people who refuse to take meds or ones that have difficulty swallowing pills.
Very well said Shelly, thank you for sharing your faith. He is the only thing that got me through!!
I lost my father yesterday, at the age of 90. He was surrounded by many family members, as I had to tell him to let go and not to be scared and that he is so loved . He was given his last rights, and let go one hour later. Dementia and kidney failure over took him. He died very peacefully. I want to thank all off you for your posts. This site has helped me go threw my trying times. All who showed me support, Thank you again. I wish the best for anyone who has to deal with this issue. I thank God for answering my prayers. My Dad died peacefully , with no struggles.
So sorry for your loss Keith. I am so glad he passed in the best way possible for him. What a blessing for him and for you all. I bet you are excited to think about the next time you see him, and how whole and healthy and happy he (and you!) will be. Thanks for your message.
Keith, so sorry for your loss. Everything about this disease is so sad. But remember, it’s now time to take care of yourself. (And I’m sure your dad would agree.)
Thanks , Mary. Yes it is time for all involved to heal. He is at peace now, in the loving hands of God. We will have mass for him thursday and then his body will be transported by plane, to Minnesota, where he was born, to his final resting place, next to his mom and dad.
Powers of attorney and living wills, I haven’t seen this on here a lot and wanted to remind all, these are important. MEDICAL POWERS OF ATTORNEY, without them many doctors will not speak to you. We have used them to refuse treatments, that might cause pain, and not really solve problems. Sometimes if seniors have insurance, hospitals tend to run a lot of test. The test for Neurothapy is painful, when it was ordered for mom, I ask, can we cure it after diagnosis, NO, he said, then why would we put a 78 yr old through this pain, when we know she can not feel her foot after getting a cut that needed stitches in it?..Stress can add to stokes. I know she has Neurothapy. I used the medical power of attorney to refuse the test. We also used it to cut down on blood draws when her veins were collapsing. I think the valley of the shadow of death, is the process we go through when dying, no one can go through it for us, It sometimes can be a year or more before you pass. Our bodies sometimes shut down quickly or over a long period of time. Our jobs are to support the ones going through it with love, and compassion. If you have a family attorney get advise, if not , look on line. But, these are important things. Living wills, financial and medical… different.. powers of attorneys. A financial power of attorney will not work in a hospital setting, you need medical. I am not an attorney, but I know these are needed. Especially when a family member is dealing with decreasing mental health. We were blessed, our mom and dad did theirs way before we needed them. Once your parent has lost mental health, you will need a doctor to get involved. What ever it takes , get these done. Lynda
All excellent points and very true Lynda. Thanks again. I was also fortunate my dad did his before he lost his lucidity. I did need the doc to do a letter of incompetency when the time came, so the medical and financial p.o.a.’s would legally take effect.
Thank you so much to everyone sharing your stories. My Mom is 91 and up until 3 months ago, she lived alone. She has major spinal stenosis and her pain management consisted of taking 8-10 aleve aday. She would forget she took one or two and when the pain didn’t go away right away, she would take more. I would see her every Thursday and go out, over the last few years she needed to use a cane and hang on me because she was too proud to be seen using a walker. She slipped off the edge of her bed one thursday and I found her. After calling the police to help her up, (she’s a large woman) she FLAT OUT REFUSED TO GO TO THE HOSPITAL as people in the neighborhood would see her in an ambulance. That all started the downward spiral. She remembers nothing of the week long hospital stay and then 5 weeks in rehab. Sure enough, at night she would start in, I had to hang a sign to tell her where she was, it rarely did any good, she couldn’t wait for me to pull the shades so people couldn’t look in. She would then get so nasty and sarcastic towards me and I know she loves me more than anything. I’m the only daughter. I cried every day. When the time came to go home she didn’t want any help but I had to get her morning help to get her up. What a nightmare, I worried constantly, then I would go to the house after work and stay to put her in bed. The only saving grace is that she does sleep thru the night, she takes ametryptaline (elavil). Two weeks at home and another fall, she gets pneumonia and is back in the hospital. NOW she gets virtually uncontrollable. They put her on xanax. Grabs me and damands that I get her the hell out, she looks possessed. Two days and shes back in rehab. The worst 2 weeks ever. She has become that patient that all the nurses can’t stand. Crying, calling me to come and take her home when I say I can’t she cursed me out and says how much she hates me. The next day she doesn’t remember and thinks we are all lying to her her. She is now home with 24 hour care and wants to know when she is getting control of her house and how long is this going to last (with the woman living there) It has been so helpful reading all your stories, I feel like I am not alone. I can relate to all of you who feel like God is no longer listening, I have prayed until I thought I would pass out but I know He is there and there is some kind of plan. My mother went thru this with my grandmother, she made us tie her hands at night because she said she was afraid she would kill us. Later we saw some humor, but I’m not laughing lately.
Chris, I feel your pain! Luckily this won’t last forever. Tough season to go through though.
It often seems like we are chasing a phantom in trying to “solve” the dementia patient’s problems. My dad could no longer be cared for by his lady friend ( also 81) and so we placed him in a memory care facility. He did a spiral downward in all areas; weight loss, increased anxiety and delusions, a bad case of shingles, and just overall unhappiness. So we took him out of the care facility and put him in a private home with a care giver 24/7. She is an old friend of his and is 55 ( a spring chicken!) He was doing just great and we thought we had solved the issues ( from the shingles, to the diet, to the meds etc.). Until this morning when he went berzerk. He ran outside and nimbly removed the locks from the gates and shot out into the road yellling at the people he came upon. “Tell everyone about the terror!” Luckily my daughter and son-in-law happened along and could assist our care giver in rounding up my dad and finally getting him back into the house. They had called the sheriff’s office and the officer came out and told my dad to calm down and get hold of himself. Well…. now what? My husband and I have not had a 3 day run without some issue arrising due to my dad. It is so exhausting. But the worst part seems to be that the problem is unsolvable. You put them on one drug and it works for awhile. Then it doesn’t work. You put them in a care facility and that doesn’t work. You get care givers and that works for awhile and then it doesn’t work either. My husband and I are considering checking ourselves into the care facility!
It often seems like we are chasing a phantom in trying to “solve” the dementia patient’s problems. My dad could no longer be cared for by his lady friend ( also 81) and so we placed him in a memory care facility. He did a spiral downward in all areas; weight loss, increased anxiety and delusions, a bad case of shingles, and just overall unhappiness. So we took him out of the care facility and put him in a private home with a care giver 24/7. She is an old friend of his and is 55 ( a spring chicken!) He was doing just great and we thought we had solved the issues ( from the shingles, to the diet, to the meds etc.). Until this morning when he went berzerk. He ran outside and nimbly removed the locks from the gates and shot out into the road yellling at the people he came upon, “Tell everyone about the terror!” Luckily my daughter and son-in-law happened along and could assist our care giver in rounding up my dad and finally getting him back into the house. They had called the sheriff’s office and the officer came out and told my dad to calm down and get hold of himself. Well…. now what? My husband and I have not had a 3 day run without some issue arrising due to my dad. It is so exhausting. But the worst part seems to be that the problem is unsolvable. You put them on one drug and it works for awhile. Then it doesn’t work. You put them in a care facility and that doesn’t work. You get care givers and that works for awhile and then it doesn’t work either. My husband and I are considering checking ourselves into the care facility!
The problem is unsolvable…If you focus on the fact that you didn’t take your dad to the facility to “get well” I have had to do that for the past five years. We have had him at home and in and out of facilities (mostly in)Now he is in a wheelchair, he eats when fed. He says very few words. There have been many stages that lead to this point. When the change came each time, I would ask God to help me adjust to the change. Eventually, that would become the “new normal” I still have a relationship with my Dad, it’s just not the same relaitonship I had a year ago. I couldn’t have handled this if I had the whold picture at once. I’ts different for each person, but I want you to know you can do this. It is a journey lived one moment at a time. Take care of yourself in the process so you can make good decisions for your dad.
Linda,
this thing with your dad is only going to get worse. If you are having it very stressful, you might want to find a third party who can help. Find a senior care counselor who might can help walk you through this. Do you have a senior services , or at the hospital there are case workers who can help you talk this stuff through and make long term plans. If you have any brothers or sisters, call a family meeting, face this with all knowing it is going to get worse, and there has to be a short term plan and a long term plan, and a plan B for those moments when it all goes to pot.. LIKE OUT THE GATE.. ” it is not what is real but what he believes to be real” , don’t argue with him, he does not understand. Find your support group, maybe family or may not be.. ask for a case worker in the care facility, ask her to help with these plans, It feels better to ACT ON A PROBLEM , then to RE-ACT TO A PROBLEM. If you and your husband are not in a position to handle this long term, and many are not, Talk to his doctor, or someone who understands this disease. I hope you find the help both you and your dad needs. Lynda
My Dad fell on the ice 6 days ago and hit the back of his head and bruised his ribs. The hospital had him on morphine for 5 days. Last night while asleep in the hospital, he woke up and thought my sister was my Mom, who died 16 years ago. So, now the Dr. thinks he has sundowner syndrome. He has never experienced any signs of dementia. Does this make any sense?
Linda, it makes total sense. Happened to my dad after back surgery/stroke.
Linda, I feel doctors need to remember that the elderly do not handle morphine/pain meds as younger people do. My father had surgery twice and both times the doctors told me that they thought he had a stroke due to the way he was talking and seeing things. ( Yes, he did try to pull onions out of my mouth and asked me to catch the bird in the room.) However, after being taken off the morphine, he was his old self.
I have a 54 year old sister who is mentally handicapped, and been falling and hitting her head for about 20 years now. My parents have taken her for many tests, UCLA, USC and none of the doctors can diagnose. Over the past year things have gotten worse. She is now hallucinating, falling, lot’s of confusion. I’m worried she has the onset of dementia, sundowners….do you think this could be possible at her age???
Hi Katie,
Dementia does not have an age preference. Different brain diseases effect different body functions and thoughts. Falling a lot happened to my mother in law, the last 4 months. You could be standing beside her and down she would go. No apparent reason, not moving. My mother in laws sister passed at 56 from complications of ALZHEIMERS. So, it is possible. We will be thinking of you..Lynda
Hi Katie-
I am the caregiver for my sister-in-law who is 53 and also has Down’s Syndrome. She, too, has had “falls” that were later diagnosed as seizures. She hallucinates, has confusion, and memory loss. We have been through a boat load of testing with her through a period of several years with the final result being an Alzheimer’s diagnosis. You didn’t say what your sister’s mental handicap is, but the risk factor for Alzheimer’s in Down’s patients is significantly higher. Check with her doctor and have them do some testing. My sister in law is now on Keppra for seizures (the “falling” has stopped) and Namenda for cognitive function. She also has a thyroid imbalance which, untreated by itself, can cause dementia like symptoms, so she is also on meds for that. She is also on Seroquel for the hallucinations and while they have not stopped, they are no longer distressing to her. We are fortunate to live in Southern California and she is seen at the UC Irvine Down’s Syndrome program and I cannot say enough good things about the care she receives there. She also sees a psychiatrist to monitor the Seroqual meds. There are similar programs in Chicago and New York, if you live close to any of those places.
My dad has been doing quite well with his caregiver in a private home. We had him on Atavan at night, but he was getting a bit nutty during the day and so the Dr. suggested Haldol during the day. The caregiver stopped the Atavan at night and went with just the Haldol during the day and he was doing pretty well , even at night. Now, however, he is not sleeping at night again. This is a severe problem for the care giver who NEEDS to sleep at night. He is up, wandering and getting lost and creating problems. Does anyone have any experiences with these 2 drugs?? For awhile he was on the Haldol in the day and the Atavan at night. He was drooling and coughing and not sleeping anyway. He has only been taking the Haldol for 3 weeks. I did read the entry above that says that the Atavan can wear off rather quickly. Does anyone know about drug interactions between the two? The Dr.’s in our area don’t seem especially gifted in dealing with dementia. They seem to just want to refer us to someone else. Thanks for any help you can give.
If sleep is an issue i recommend Melatonin… this will help him sleep at night but has no long lasting effect and isnt addictive. If the Haldol is only taken once a day try changing the time he is taking it…
Those are just a few suggestions i can recommend from my experience of working in Long Term care.
Linda, as I recall, my dad didn’t do well on either of those. It’s different for everyone. Meds are so frustrating to deal with, especially if there are several of them. Hope you can find some resolution.
My FIL went from falling more than once at home, to the hospital, to the nursing home, to skilled nursing and just got moved into the Alzheimers wing. He’s a sweetheart during the day but mean and nasty at night. My husband gets upset when we visit if I try to converse with him about the past. I’m just trying to live in that moment with him. Am I wrong? He shuffles when he walks so between what they felt was dementia and his walking, they’re starting him on alzheimers medicine (haldlo?) and something for Parkinsons.
Your dad may not be capable of conversing back about the past, but if it makes you feel good, DO IT, if it upsets your dad, or he has to struggle and feel bad that he doesnt remember, DONT DO IT, Your husband feels like you are riding a dead horse, why ask someone a question who surely doesnt know the answer. A mans logic, says why would you do that? … But, he is your dad, and you are having to adjust to loosing him. You want to hold on to any moment he MIGHT be able to give you. It is ok, to be you. Ask, if he remembers YEA, if he doesn’t , say ” its alright, do you want to have ice cream?” Take him treats., heck, he will be crossing over soon, this is your time together…. , let him EAT CAKE , bacon, salt.. all the things you have worried he would eat.. .. The shuffling may be a sign that he is forgetting how to pick up his feet and walk. ENJOY EVERY MINUTE YOU CAN. Make every minute with dad as fun as possible. Remember , Gaither singing dvds or Lucy, what ever brings him a smile… Never argue with them.. If they see a race car driver, then ask which one and enjoy the conversation. Go for THE GOLD in moments, this is his time.. Each day may get worse, SO THRILL IN THE MINUTES… LYNDA
Lynda, your advice is such a Godsend, and all right on. Wish I read more of these BEFORE my dad’s term in the sundowner seat! Thanks for all the help you are providing to those in need.
Dear Lynda,
Thanks you so very much, ur comment to Sharon has touched my heart. Just over a week ago I was talking to one of my sisters, on how we should treat our mother who has Alzheimers. You took the words out of my mouth. Just knowing that there are others that think, and feel the same as I, makes me happy. Let them be however they want to be. If they live in a different world let them live there, because in all honestly they know no other way. Don’t correct them when they are wrong, let them be. If they are not hurting you, then why would you hurt them? After all they have shared their life, an they should have us to remember for them. For my mother, I pray each day that my family is willing to face what may come, to find the strenght to except that day, and prayer for other tomorrow.
I have worked on the Alzheimer units for over 15 years and we have had patient who had sundown syndrome. We made the adjustments but that was for only 8 hours to 12 hours on the night shift. i understand how you feel. My husband and I moved in with his parents in October 2010. His father broke his hip and his mother was dignose with Alzheimer disease two years ago. His neiece was caring for the both of them until his mother ended up a trugeon to the head that couldn’t come from a fall according to doctors. We told her to leave with a court order and we have been taking care of them. This week after my husband made the mistake of letting my mother in law sleep past 5 p.m. Sunday. I have been dealing wtih Sundown Syndrome but it is okay because I don’t work and my husband don’t work either. We are retirees and I try to explain to him that she just want to watch television and I stay up with her. We have to do like we did when we had babies or small children, sleep when they sleep and be up when they are up.
I take her to church with me, I am called of Jehovah God as his apostle and I pray and speak the Word of God over her and she can communicate with us as well with my church members. When we take them to church on the 2nd Sunday in every month the people always walk up and say do you remember me? I think it is so unfair, it should not matter if she know you; just be happy to see her and keep a simple conversation going with her and she is find.
I hope I have said something to help or encourage you in the endeavor waiting for you ahead. Accept your father where he is don’t try to put him in the past. My sister in laws try to take her back to the past. I don’t know her past I have only been in this family 3 years and that is good. I accept her where she is at now and I don’t try to take that from her. If you are a new born christian and you don’t quite unstand how to live for Jesus. You will not know everything but you will began to walk by faith and not by sight so this is not different. Walk by faith in your father and not by sight what you want it to be and not what it is and you will find rest for your soul. I will pray for your father and you pray for my mother in law and we will see Jesus do the rest. Your Friend In Jesus Christ
My father-in-law had knee replacement surgery this week and at night he becomes agitated and they have to restrain him. This has now happened for the second night in a row. He was suppose to be released today but has to stay in. I am staying with him tonight. The doctors and nurses are saying this is from him having surgery and coming off of the anesthesia and gradually taking him off the pain medications he is on. He does not remember doing these things the next day and it upsets him. When I first heard that he was doing this I thought of Sun Down Syndrome. Am I right in thinking this or could it just be a reaction to the surgery, anesthesia, and medications?
Sundowners often comes on after a stay in the hospital. What kind of pain meds was he on? Did he have any dementia before going into the hospital? I have known many with knee surgery, and not had this experience. Do not take him home until THEY have him back leveled on meds. If there is a reaction , find out what it is to, cause you don’t want to go through this again. My sister had a violent reaction to demeroll, (spelling) , she would take you out on it, she was allergic to it. You have to know what he is reacting to. If they try to release him tomorrow , you say no.. I am not qualified to handle this situation, what is plan B. I REFUSED, to take my sister home, she was crying uncontrollably, and MAD, MAD , MAD. She was in pain, and turned out her pain meds had valuim in it, she was highly allergic to that. It was the meds. Change pain meds, and stablize before you go home. Ask questions, and get answers. Ask for a print out of all meds he is on. Your dad is having moments of not being lucid, get a MEDICAL POWER OF ATTORNEY while you are in the hospital, patients assistance can help. So , if they say they cant give you one, stand on the POA, AND them restraining him is proof he is having moments of incompetinents. (spelling it is late, and I am tired.) Send another note if you have questions. LYNDA
My 94 year old mom who lives with us began complaining of left side pains getting in an out of bed with screams like she is dying. Xrays and doctor exam revealed nothing. One night she was screaming because she thought she was falling out of bed, but was not. Last night screams got worse every 30 minutes for 4 hours and then stopped. She could not remember any of it. Also wet herself in bed for first time in one year. We think she is screaming in her sleep. It is keeping entire household from sleeping, because screams are very loud like she is dying. Do not know what to do. Going to try having her sleep sitting in a chair which she did for several years when living on her own. If sundowners syndrome, I wonder if leaving a light on all night will help.
Hi Jimmy, I can hear the stress. If it is Sundowners, and it does sound like it, it will not go away in a chair. They are NIGHT TERRORS. She can not help it. They are worse than night mares. She may believe someone is trying to kill her, or stabbed her, falling off a building. Then when you walk in, the mind jumps, and she has no recollection of the sounds she has made. See a neurologist for medicine. It is not depression, it is hallucinations. But, you need to see a doctor for the actual diagnosis. She can’t help it, she is facing terrors. Help her. Read some of the old post, and see what meds might help.
My father who is 94 and has exhibited NO previous symptoms of Alzheimer’s or dementia is recovering in the hospital from major back surgery (two vertebrae broken in a fall and successfully repaired) and is displaying classic Sundowner’s symptoms. I am finding very little information on Sundowner’s in persons who do not already have dementia and have only started displaying symptoms after hospitalization. Can anyone out there give some help?
Hi Bob, Yes , this often comes on after surgery if they are older. Maybe.. a small TIA (tiny stroke) happens in surgery, TIA’s are often missed. My mom used to have them, my sister and I were the only ones who could tell she had had one. There is no major sign. they don’t always show up on CT’s. I don’t know exactly why, but I know they happen. If you read on her on OLDER POST, you might find someone who had back surgery, or heart surgery, and now have this. However, usually once they have it, I have not read where it goes away. There are some ideas on here, in how to live with it. We are here if you have questions. I am so sorry that your family is having to go through this. LYNDA
What to Do for a Person You Suspect of Sundowning
Possessing a clear understanding of what a person is going through will go a long way to preparing your mind and body for a healthy response. Gerontologists recommend staying calm and reassuring to convey a sense of peace and tranquility. Never confront a sundowner, accuse them of being irrational or try to convince them that the feelings they’re experiencing aren’t real. Suggest a soothing drink or a nap to help restore balance. Close drapes or shades late in the day, and divert attention from clocks and watches. Involve the sundowner in a favorite structured activity. Additionally, make certain the sundowner’s basic needs — like hunger, thirst and hygiene — are being met to reduce stress. When all therapies have been exhausted, turn to oral medicines, patches and other chemical therapies being fast tracked by medical researchers. At the most extreme, antipsychotic drugs and/or sedation may be prescribed to help sundowners find peace from the storms raging in their brains.
Thank you to all who offered me adivce on this website. It was a mind and emotional support system that I didn’t have anywhere else. My dad passed away on May 10th. He had suffered from aspiration pneumonia and once he got into the hospital he never improved. We removed him from the hospital and he died in his home with his care giver 3 days later. It was a blessing. I wish all of you good luck with your situations. And Bob… you just posted regarding your dad getting Sundowner symptoms after surgery…. would you know if he had had any sort of Morphine during his hospital stay??? We are seeing incresed suspicious instances of anesthesia and morphine put together in the surgery situations and, bam! people wake up with Sundowners. I don’t think there is any professional research or even recognition of the situation, but my husband and I are finding the 2 together often and then the result is Sundowners. I would think at some point, someone would begin to be suspicious. However, most of the medical people we dealt with were not especially curious about anything. We often found the Dr.’s to be both arrogant and stupid and I got more help from the folks on this website than anywhere else. I know that sounds really pathetic, but it is true. I found out about the 36Hr. book, the drug Haldol, the other possible drugs, all on this site. Anyway, thank you all again. Linda T
Linda – my Dad was on morphine for a few days after the surgery. They replaced that with oxycodone combined with Tylenol for another few days, and Haldol at night for sleep. Most recently his pneumonia is not getting better (or worse) and he is having trouble swallowing food so he is being tube fed and has been placed back on the morphine pump with like a 12-minute timer.
Bob
I am so pleased that i found this website today! I have been feeling very depressed and guilty, because I did not understand what was happening to my dad.
My father was diagnosed with Parkinson’s over 11 years ago, and 4 and a half years ago, my parents moved in with us, as my mom could not drive a car, and my dad was not allowed to do so anymore. Looking back, I realise that my dad already had sundowners, although it was not so bad yet, just bad dreams and hallucinations, with very little sleep. Being sleepless was and is normal for my dad, as he has always slept very little.
I had better explain my dad a bit more, than maybe you will understand a bit better why I feel the way that I do. My dad has always been the “BOSS” of the house, his word was law, and even my mother had no right to express any thoughts, or ideas or anything. She was not even allowed to choose the colour floor tiles she wanted in her kitchen! My mom raised five children, worked basically like a slave all her married life (in the house) and had to do everything for my dad. He could be sitting in the kitchen, having supper, just in front of the fridge, and if he wanted something, he gave the order, and she had to stop eating, get up, and take it out of the fridge which was a foot behind him. He mistreated my older brother – both mentally and physically – basically destroying my brother’s self image – because he was a soft and gentle person like my mother – he was supposed to be tough and hard like a man!! I am the eldest of five, and the only daughter, and I can remember how my poor brother was treated. My mother would try to intervene, and it just made it worse. He was never physically violent to wards to my mother, but was verbally abusive if he did not get his way. My three younger brothers managed to get away without too much mental damage, as he concentrated on his oldest boy.
As the years went by, I got married to a wonderful man, soft and gentle, the total opposite to my father. He has also caused that I am very defensive, and will not keep my mouth shut if I feel that I am being verbally attacked, which fortunately for me, my husband understands.
Anyway, to cut a long story short, just shortly after my parents moved in, they were both diagnosed with cancer, my mother with colon cancer and my dad with prostrate cancer. My mother had a portion of her colon removed, and started chemo, but had to stop as it was affecting her heart badly. My dad had an orchidectomy. My parents were very young at this stage, just 70 and 71 respectively. My parents moved into their cottage on our property, and I would go in every day to check on them, take them shopping, library, etc. I worked from home, and according to my dad, I was available at all times for them, so he could not care whether I was in the middle of a job, if he wanted something, I had to get up immediately and do what he wanted, there and then! It caused quite a few arguments! My mother was finally starting to fight back, and refusing to bow down to my dad all the time, but it was too late. All it caused was that my dad was just horribly confused by her reaction.
My dad was quite together, with only mild sundown syndrome symptoms at night. It all changed in October last year, when my mom was diagnosed with terminal cancer – colon, liver, lungs, spine and lymph system. The night after we told my dad what was happening, he started with very bad sundown syndrome – which in a way I understand, for it was a huge shock for him. But at the same time, in stead of being there for my mom, placing her first and supporting her as much as he could, he just gave up and became totally dependant on her. He also became both verbally and physically abusive towards her, and I had to seperate them. My husband and I moved them into our house, putting my dad in the main bedroom, and my mom in my daughter’s bedroom (she moved out so that we could do that). I was eventually totally exhausted, as I was nursing my mom day and night, and also having to try and keep my dad calm and contained. That stopped the day I caught him hitting her, because she would not get up and help him dress! My mother was the entire spill of our family life, and she was more than my mother – she was my best friend, my sister, my everything! I adored her! I love my dad, but not in the same way as I loved my mom. There was no way on this earth that I was going to allow my dad to mistreat my mother even more. We eventually hired nursing care, one fulltime at night to take care of my dad, I took care of my mom at night, and then a nurse’s aid during the day for both my mom and dad, while I tried to rest and carry on working. It was becoming extremely stressfull at home!
My mom eventually passed away on 28 February this year, and my dad has just completely regressed, showing all the symptoms that are discussed on the blogs here. We eventually had to let our night carer go, as he was gay and unfortunately my dad started saying that he was “fiddling” with him! We kept our day carer, and she has been an absolute treasure, helping to keep me sane! She works during the week, and we have just this weekend hired another nurse to take care of my dad on Saturdays and Sundays, while I take over at nights.
My dad is on various types of medications, including 3 different tranquilizers and 2 sleeping tablets at night. He complains of terrible pain in his left shoulder, but xrays do not show anything wrong. Since my mom’s death, my dad has been suffering from UTI’s, and is now on a permanent antibiotic. (he has a permanent catheter due to his prostrate cancer, he is unable to pass urine normally). He is constantly trying to get up, still does not sleep, in spite of all the medication, will insist of trying to walk, even without a walker, undresses himself at night, is verbally abusive, and last night, for the first time in a few months, tried to hit me!
I have had enough! I am wrong, I know, but I have not been able to mourn my mother, I am so angry at my dad, for once more, he placed himself first and made my mom’s last remaining days on this earth more hellish than it should have been! I am struggling to get him into a home, because they are not all equipped to take care of him, and there are huge waiting lists here in South Africa. Also my dad never wanted to listen to anyone about making provision for his old age, so all he has is the proceeds from the sale of his house and a tiny little government pension. He has given my brothers a huge part of the money he got for his house, and now so little is left that my husband and I are going to pay a lot towards frail care once I am able to get him into a home. I am stressed, exhausted, cannot forgive my dad! I also feel devastated that I feel this way, which just makes things worse.
Michelle,
I am very sorry to hear of the loss of your dear mom. She sounded like an angel leashed to a demon, sadly.
First of all, you are NOT wrong for having had enough and being mad at your dad. Please know this. There are limits to what we can do for our loved ones when they get to a certain stage (which in my opinion your dad is way past, and is lucky he got to stay with you as long as he did!). My dad also did the naked angry violent up at night blablabla stuff. Only a professional can really deal with these times, and sometimes it’s too much for them too. I understand the difficulty of placing your dad and finding a home for him. Violent men are the most difficult, since no one wants to take a chance on them. Too much liability, I guess. Same in the USA. There were times when I didn’t know where we were going to put him, since he got evicted from 2 homes. The only thing that got us through was the Lord. I was way in over my head and could only take one step at a time each day. Jesus was with me the whole time and took me through each step. I had to rely 100% on Him, and He came through, as He always has and will. Pray without ceasing, if you aren’t already. If you aren’t already working with consultants and professionals in the elder care arena, please ask around at the senior homes and alzheimer associations for referrals. They helped me in countless ways. I hope they can place him soon, that will be a lot better for you. May I ask how long he is expected to live, if they have given you a timeframe? You are not a bad person or daughter. You can stop the guilty feelings. Don’t even let them get a foothold!
Hi Tammy,
We have no time frame for my dad. He could live 3 weeks, 3 months, three years or 20 years! And the time lies in front of me like a long pitch black tunnel, with no end in sight. I am now at the stage of having a grownup toddler on my hands, who when he is in the full grips of SD, throws tantrums when he does not get his way. But at least when I had children, the tantrum stage disappeared as they grew up, and the situation just got better and better, and I also was stronger and physically better equipped to deal with it. I am n ot so strong with my dad, at least physically. My husband has had to step in help me, as for some reason my dad really respects him and loves him. My hubby and our nurses are the only ones who have not had to deal with the bad side of my dad, for he is always on his best behaviour with them. Someone from hospice said to me that I should count myself blessed, for my dad loves me so much that he can let go with me! If this is being blessed, than I do not want to know what cursed would mean!!!
After seeing and reading this site, I sat down yesterday and started searching for specialist homes who deal with patients like my dad. I have managed to find quite a few, of which 2 have a place available for him. It took me the whole day! I made an appointment with them for Friday, and will go and inspect them, and then make up my mind what we are going to do.
Thank you for your kind words, they made me feel better instantly. I realise now that the way I feel is because I am exhausted, both mentally and physically, and it is also part of the process of grieving for my mother.
Michelle,
Everything you are feeling fits your situation, a couple things you might not have thought of. When your dad was born, there was depression, WWII started, men had to be tough and mean they thought. Ladies Home Journal, told the wife to put in white carpets, and put the children to bed at 7, the moment the man came home. She was told to keep her husband happy, he worked. They both responded the way they were taught. Although it might not have been perfect, it was the way things were. We are talking over 70 years ago, here Slavery had only ended in his fathers life time. Big things changed in their life times. It is not easy to change with the times. We say we will, but when you are 50, you just listen to oldies.. well not all.. but you see where I am going. He is and She was who they were because of where they came from. Let that give you some understanding till a little forgiveness can find its way in.
You have done more than so many would even have tried to do. It is time to call in a team. Your back up troops, to care for your dad, if you can find a suitable place. If not call your brothers and have a TREATMENT TEAM MEETING. Put all the cards on the table and ask for advise, assign jobs. The young man , who your dad was so abusive to.. might be able to give mental support… you all have to remember that a treatment team is not EMOTIONALLY INVOLVED.. so since you don’t have one, you have to become that team. Try not to think when you are doing so in anger… get a sitter 24 hours before a team meeting.. so you have time to calm, get those boys who were not so hurt, to assist.. if it is the new century, they are part of the team,,, anyone not helping must want to step up and take him on full time.. each keep him a month.. or 2 weeks if a month is too long.. get a neurologist, to put him in a hospital to balance his meds, usually 3-30 days.. making sure he is on the right meds.. Once he is in a hospital, if you feel you are not qualified to care for him, tell the hospital, and have them assign him a social worker.. See how they do then..
You have done a good job… thornes to daisies.. my family had a very bad man , who severely abused his kids… when he was found in a Texas hospital on vent, the hospital had to find his family states away.. Each child did not want to pull the plug, although revenge could have taken over, their Christian hearts took over, and took compassion for man who should have died a terrible death.. With compassion and forgiveness, they asked them to do a brain scan to prove he was brain dead, they took another 72 hours to pray, and each to come to terms of forgiveness.. When their dad died, they had him brought home, buried him beside their mom, his first wife, and said … she always loved him, now he is nice, he had been baptisted in a church mannny years before, they prayed for his forgiveness of souls, and they let go.. these are children who now adults slept with guns by their beds their whole lives… You have done a good job.. forgive yourself for the guilt you feel.. Your mom did a good job, and it was your dad who made you the strong woman you are today , there must have been something he did good once.. focus on it.. you are a good daughter.. it is time to call in the troops. .. God bless..
Hi Lynda
Yes, I agree with you about the times in which my parents were born, making them who they are, but at the same time so many of my friends’ parents were born the same time, and their fathers were not like my dad. My husband’s father was even older than my dad, and he was amazing with his wife! She was a full time housewife, and he worked, but he still came home and helped her cook, and helped her clean up afterwards. When he retired, he took over the housework so that she could concentrate on her hobbies, such as needlework, sewing, etc. She was only too pleased, for her health was already suffering by then, and she HATED housework! He loved it!
I also agree with you that my dad made me the strong woman I am today – totally determined to never accept what my mom had to, and to NEVER treat any of my children the way my dad did!
The young man that you are talking about is now 51, and all my brothers are behind me, and support me as well as they can, but unfortunately none of them are in any position to take my dad for any length of time. My eldest brother is single, and unfortunately is crippled after an accident at work in which he broke 5 vertebrae in his neck. He is still able to walk, but will be in severe pain for the rest of his life. He is the only one who has been able to take my dad for a weekend, but I feel that it is unfair to saddle him with my dad for a longer period of time. Unfortunately we have been hit very hard with the latest economic depression that hit the world recently, and my two middle brothers are unable to keep my dad, as they are struggling to keep the pots filled and families fed. My youngest brother lives more than 3 hours away, and he comes through once a month and spends the weekend with us, to keep my dad company. My dad, of course, is on his best behaviour then! That makes me so mad! Unfortunately he cannot take my dad for any length of time, for his wife is in the same boat as I am with her mom, she has been nursing her mother for almost 20 years now. The old lady one day decided that she was not going to get up and do anything for herself anymore, and my poor sister-in-law has been doing everything for her since then. In fact all my brothers live more than an hour away from me, and rarely are able to come through and spend time with my dad. My eldest brother is in the police force, and works long and irregular hours, and that makes it even more difficult for him. I was the only person to able to help my parents, and I did it with all the love in my heart, especially for my mom! My dad has always been a selfcentered egotist, and as he got older, he just got worse! I was also the only one, apart from my youngest brother, that could talk to him and get him to moderate his behaviour.
I am going to inspect 2 places tomorrow, and hopefully I will be able to make a choice of the best place.
In many ways my dad was a good father and husband – we were always fed and clothed properly, educated to the point of graduating high school, and if any one of us ever fell into financial difficulties, he helped out as much as he could. He did not drink, and his whole salary package was handed to my mom each month, he never kept a penny for himself. He respected me, even though I never kept quiet and told him what I thought, and strangely enough he accepted it from me, but never from my mom or some of my brothers! But then again, my mom told me that he really wanted me when I was born, but never any of the others. He never mentally abused me, but I saw what was going on, and I really resented and hated it! I also quickly learned to not say too much, for he quickly would turn against the others and put them through hell, especially my mom and my eldest brother. I just could not and still cannot, accept and understand how he could behave the way he did. At the end of her life, my mom could not handle him around her anymore, and resented him terribly.
It will take time, I know, and eventually, I will forgive him, for he never did me any harm, apart from his SD episodes, and there he is not in control of himself.
In reading your story, I realize that there where people in far worse positions than we were. I am glad that you were able to forgive, and hopefully I will be able to do so before my dad passes away. Thank you for your kind words.
Everything came to a head yesterday afternoon!
Since my dad had a bad fall three weeks ago, his agression has climbed steadily, and he has become more and amore uncontrollable. his bad periods started earlier and earlier every afternoon, and yesterday was a particularly bad one. He wanted to go home to the old house where we lived for many years, and no reasoning and trying to calm him down helped in any way. His day nurse Alna and I spent about an hour with him trying to calm him, trying to show him pictures, get his mind onto other things, but nothing worked. He tried to hit us with his walking stick, and although we took it away from him, he just tried different tactics. Having grown up with my dad, I could see the signs that he was working himself into a total rage, so I gave him a tranquiliser, which he took, but that only had an effect much later in the afternoon. When he started to try and break our fingers, and almost succeeded inbreaking my thumb in front of my daughter, that was the final drop to make the bucket overflow. I made him see that he was frightening my daughter who was watching everything, and as he looked at her and sneered, he grabbed my thumb and bent it backwards before I could stop him. The crack was audible in the kitchen, and my daughter simply lost it! She flew into him verbally, telling him exactly what she thought of him at that moment, which unfortunately did not help. I phoned our GP, who told me to take him straight to the hospital, where they would admit him, and monitor him.
The doctor then spoke to him when we got there, and afterwards she took me into another room and told me that he was totally senile and going through a “beserker” stage, and that we would not be able to take care of him at home any more, but that he now needed specialist care. Of course by the time we got him there, he had calmed down, but also because we told him a lie and said that we were only going to get his catheter changed, and then we would take him home.
I had already found a good care centre for him last week, but still need to get some legal documents completed. Then this happens! He will not be coming home any more, but will ge going into a place of safety for family respite, and from there he will be going straight into the home. He more than likely will be spending the rest of his time under sedation, but that will be for his and the staff’s protection.
My thumb is sprained, luckily not broken. I just feel so sad that we have been forced to do this, but in the long run it is the best that we could do. My family was suffering, not wanting to come home anymore, and he simply did not give me any choice.
I am so sorry and sad for you reading about this! So painful, in more ways than one. These diseases are so cruel that way, and seem to be effecting more and more people each month. I am really sorry your daughter had to see that, and for the reaction it produced. It is unfortunate that the GP couldn’t have advised you sooner that he needed outside care, but such things happen. You certainly did more than your share, beyond the best you could do! No one (that isn’t paid to) should have to put up with that kind of behavior.
This sounds so much like how my dad got, however he never lived with me (as I did not inherit a caregiver gene at all!). My dad got evicted from 2 assisted living homes for increasing violent behavior, until no one would take him and we had to dump him at the only hospital in his county that he’d not been to recently (meaning, all the other hospitals were familiar with him and would just discharge him after a couple hours). It was only by the grace of God that that last hospital was able to find a skilled nursing home to take him, albeit a few hundred miles away. But that was ok.
Facing that point when they can’t come home again is so difficult. I live in NM and my dad was in CA, so I had to deal with this remotely, and also flew out for a couple weeks to help with the first transition (which went well for a few weeks, then BAM!).
In the last place that took my dad, he spent the rest of his time under sedation too. No more midnight phone calls saying they were calling the police or taking him to the ER, with a frantic rundown of all the violent things he was doing. They could tell he was going downhill fast, so we just put him into hospice mode there, and within 4 months he passed away. I never got to speak to him or see him after the last placement, since he couldn’t figure out how to have a phone conversation, and he didn’t know who I was anymore. I think that that was mercy on the Lord’s part, to help spare us from some of the pain. The distance helped with that too. Everyone thinks they want to be with their loved one near the end, but I don’t believe it’s always the best case. It wasn’t for us. I would have confused and upset him even more, and I would have been a wreck. It was best to let the neutral professionals care for him. He wasn’t alone when he died, they were always right there. My dad had recently come to faith in the Lord, so I knew his suffering would soon be over.
If you are a Christ follower, He will will carry you through this turbulent time. My faith is the only thing that got me through. It all worked out for both our goods, just like He promised in His Word. God bless you and your family for your valiant attempts during an unworkable situation. Truly, you didn’t have a choice, I agree. Please let us know how it is going at the new home sometime.
I am glad to have a place to ask questions that my mother’s Dr.’s don’t seem to have frank answers to. My mother at 75 had a heart attack and a stroke a year ago and seem to have come back pretty well, but still needed some assistance with daily tasks so she moved in with my husband and me. Our kids are grown and out so we both retired early to enjoy travel and each other, so having her in our home is a major adjustment. Then we started hearing my mother having very loud conversations with someone at night, all night long. She would laugh and be very sweet to the people she was “talking” to. Last month her Dr. thought it would be a good idea to have her bad knee replaced since she had been having alot of pain and it was hampering her walking without a walker. She had her surgery and was on a morphine pump for 2 days. She went into a mental state like I have never seen before, from crowds of people and her room full of popcorn to being trapped in the hospital basement and frantic phone calls from her all hours of the night and day. Finally her nurses asked me to come stay with her so she won’t climb out of bed and hurt herself and her new knee, what a nightmare that was. We brought her home after 2 weeks of PT and had home health nurse and a Physical Therapist come. Now my mother’s mental state seemed to have become worse. She does not sleep at night for all the conversations and wandering around the house wanting a shower or thinking she is in the hospital and not eaten for days. She has even called the hosp. and her doctor and told them she is in her hosp. room and she has not gotten a tray for 3 days and is hungry. She eats very little and is forgetting I told her things and where she is. I took her to her Dr. and he put her in the hosp. again and her nerologist said it sounds like Sundowners Syndrome ,dementia and small sezures too. She had an MRI which was negative. I am at a loss what to do now to help her. Is there medication or therapy? I really don’t want to bring her back home just to sit in the house, nap, watch tv all day and be up all night. I love my mother and dread telling her I have to put her in a nursing home, the guilt would kill me. She has limited funds so I would think an assisted living facility might be out of the question. I am an only child and my father passed several years ago. I don’t know where to turn, what to do or who to contact. I have POA and she has a living will already. What’s next ?????
Gloria, so sorry to hear all this. I too am an only child who had POA for my dad. When my dad got to the stage your mom is at, we placed him in assisted living until his funds ran low (actually, he got evicted before that, but that is another story, see my other notes on this site!). My dad’s sundowner’s kicked in after back surgery, during which he also had a stroke. He already had dementia and Parkinson’s too. In my opinion, your mom is more advanced than you can handle in your home. I am hoping Lynda or other experts will chime in with their opinions too. Different people respond to different meds, so we could all suggest different things, but not sure how helpful that would be. For example, my dad was put on Ativan, Haldol, and a bunch of drugs that I can’t even remember now. Most of them didn’t work for him, and his docs were also pretty powerless to effect any positive changes. His condition deteriorated, and his funds ran low enough that we got him placed in a skilled nursing home (so that Medi-Cal, which is the same as MedicAid elsewhere, would pay for it). Eventually they put him in hospice mode and stopped most of his usual drugs, and kept him on different kinds of sedatives, sometimes resorting to restraints if needed. Very sad.
I recommend that you contact your local senior center or Alzheimer’s Association to get referrals to people and places that can help you. A Place For Mom was a lifesaver for me, I am sure they can help you too (www.aplaceformom.com). They are placement consultants, as well as overall eldercare experts. You can also talk to your local long term care ombudsman (look in yellow pages, government listings). Find out where your local MedicAid office is and start applying now, as it takes a long time to get approved. They only pay for skilled nursing (i.e. convalescent home), so assisted living sounds out of the question like you thought.
About the guilt…please read The 36 Hour Day by Nancy Mace and Peter Rabins. Excellent source for all aspects of caring for and dealing with people with dementing illness. This will help you with your guilt. I too promised my dad that I would never put him in a home, but I had no choice. You may not either. Someone told me that sometimes there is no good choice, but just the best that you can make at the time. Hope that helps you. These situations are beyond what family members can handle on their own. It will most likely get worse, and she may become less and less the person you knew and loved. That is how it happened for me. You will need detached professionals to help her. That is what they are there for. You can go to medicare.gov’s website and compare nursing homes. Here is the link: http://www.medicare.gov/NHCompare/Include/DataSection/Questions/SearchCriteriaNEW.asp?version=default&browser=Firefox|4|WinXP&language=English&defaultstatus=0&pagelist=Home&CookiesEnabledStatus=True
Most important of all, call upon your faith in the Lord if you have it. (If not, now is a good time to start, trust me!). Jesus Christ is the only thing that helped me get through my experience intact. He guided every step of the way. He will do the same for you. Please let us know what happens, and feel free to vent anytime. We get it, really.
I recently heard about this syndrome. I think my grandfather may be suffering from this but he refuses to go to the dr to get checked. At times he feels fine but at night he turns every single light on in the house and has this anger towards my grandmother. And its only with her. He insists that she has a boyfriend and he paces and seems restless at night. And recently we have been experiencing a lot of rain and he has mentioned twice that he feels weird when its cloudy outside. Has anyone experienced this with a loved one? Could it be the “darkness” of the sky thats making him anxious?
Kim, part of my dad’s symptoms also involved turning on all the lights at night, as well as extreme jealousy toward his female caregiver. He would tell me how she’s got another guy on the side (he thought he was her main guy, of course). He would ask her for her ID and act like he was the sheriff. He eventually fired her (and didn’t understand why she was packing up her stuff the next day). This was the last straw that prompted us to move him from his home, as he was edging toward the violent man he would become. Hope it doesn’t go that way with your grandfather, but be prepared for anything. I think the dark sky would definitely have an affect. I also don’t see why some seasonal affective disorder wouldn’t be thrown in to the mix. I am sure it doesn’t help, and that sunny and bright would be better.
My Mom is suffering from dimetia for the past three years. Lately I’ve noticed that she is confused about the time and is making breakfast at 9PM at night. She is constantly rearranging things and displays greeting cards from Christmas and Easter even though these holidays have past some months ago. It’s tormenting me to see this happen to her. I bring her to the Adler Clinic at Yale on a regular basis and I wonder if there’s anything I can do to help with this confusion?
My 60 yearold grandmother has been living with me for a little bit now after a month and a half in the hospital then a minth in a pphysical rehad do to a serious blood infection from a pace maker put in. shes been having wierd “fits” or “spells” at night such as calling me by another naming, thinking we live in alabama (we live in florida, but she did grew up in alabama) , forgetting she took her meds, wandering the house a all hours of the night, and the like. At first it was onlt happening once in a while then it went to a couple times a minth now its happing like 2 – 3 nights a week and there getting worse. Im so worried to mention it to her because shs all ready takibg it hard she had to start wearing diapers shes so worried about losibg her independence and I dont want to scare her. Because someone told me that sibce I have a 2 year old with leukemia im being “medically paranoid” and its probably just old age. But its starting to worry abd scare me because she trys to smoke n bed in forgets shes smoking, which we dobt even smoke inside, 4am cleaning ect. So it makes me worry she may hurt herself or may hurt soneone else by accident. I dont know what to do or even how to go about the whole thibg or if im even being paranoid”. Any advice anyone?
Narseis, You are not being paranoid.. that said.. you need to take some precautions.. if you can buy that smoke less cigarette that might help.. it is battery operated, I would remove all lighters.. you need to take her to a neurologist.. you need treatment and meds.. You need to have her mentally checked out, and a power of attorney both medical and financial.. so you can make some decisions. tell them what is happening. she is at that place where you ask her if she wants to go and she will say no. that is not an option. When you see the neurologist.. explain the information you gave us.. calling you by different names, doesn’t always no where she lives, etc.. document on a calendar.. daily what she says or does.. then take the calendar with you to the doctor… doctors are all about documentation.. keep a running email to yourself discribing the situations.. date each time you write.. date and time… God bless you and you are doing fine. Lynda
this whole scenerio with dementia has not been easy..i left my home,career and life to care for my mom with dementia..i have been doing this for three years..it appears that i will have to place my mother in a nursing home losing our home and modest assets. i will be going to a homeless shelter in our capital…everything whisked right from us,,cant keep personal belongings..how am i going to bring a cat and furniture to a shelter…nights are terrible. my mother is counting her money in her wallet over and over..counting her change..looking at her checkbook for hours over and over..she wont sleep nights..shes missing money she claims…i wish i had an alternative..she wont spend down..and is moaning at every bill i show her…she doesent even want to pay the taxes..this is not how i saw things for the future..around 8pm she starts the cuckoo period intill about 5-6 am.i tried my best..
To All: I Have a good friend Jim, who was a next door neighbor until he and his wife went to Alaska some years ago. about a month ago, Jim and his wife while in Alaska, got concerned about his elderly mother in California so he left his home and business in Alaska to care for His mother. Mother was diagnosed some years ago with Lupus and subsequently had a pain pump implanted to deal with Lupus issues. Shortly after Jim arrived at his mothers, he found out she was not goung to her pain Dr. to get her pain meds, He attempted many times to get her to her Dr. for medication, but Mother refused to go.
ENTER ISSUE # 1- (2 years ago), for that entire year, after she had called the police many times, and had made a total of 47 visits to her house that year, for various disturbances. We as next door neighbors, were accused by her, of shooting lazers at her through her roof, attic, ceiling, and into her bed to terrify her (every) night. This continued, even after Jim an his wife arrived to care for her last summer. His mother, who we, my wife and I, think she has had Sundowners Syndrome for some time now. After Jim’s dealing with all of the issues (mother won’t go to Dr.)(mother cursing at Jim) (mother refusing to leave house for any reason)(mother incessently complaining next door neighbor (Me),shooting Lazers at her every nite), Mid June Jim told me that he felt both helpless and trapped and after seeking help from many social agencies and workers, that he, with only Power of attorney, felt his only choice was to return to Alaska.
ENTER ISSUE # 2- Jim was accused by his Mother, and arrested by the Police, for grand theft. Jim was subsequently handcuffed and taken to Jail for theft. The charge was later changed to (Elder Abuse). Jim and wife’s only possesions- all money,clothes,trailer, are in impound til 8/4 . This is an example of what can happen when a child attempts to care for an elderly Parent with mental issues/(Sundowners Syndrome) I have known Jim for 26 years, and he would never HURT OR STEAL form anyone, let alone a Parent. Get Professional advice first. you wouldn’t want to be blind sided like this.
I am so sorry for Jim, sounds like he tried to do the right thing, This is a lesson to all, remember that there comes a time you become the parent.. as a parent you child says “No, I don’t want my 5yr old shots” you take them anyway… although we understand wanting to run away, if it is a child that is called abandoment.. turns out if it is an elderly with issues, it is abandoment… We are taught to respect our parents wishes, and when they have clear minds, as both of my parents had on the day they passed you must do that, but when they are mentally ill you are now the parent.. If they refuse you get assistance, get MEDICAL POWER OF ATTORNEY..so you can make appointments and trick them into going.. I don’t care if you have to say it is for an ice cream. Once in the parking lot, you bring the doctor out… and refuse to leave till he sees her/him. Just like with children you choose your battles, handle things you can handle without their opinions, and when it is a battle you MUST WIN, YOU WIN IT..if that means calling 911 and having them taken to ER for diagnosis. .. NOT getting their meds is a sign of not mentally well.. Don’t wait a year. A police record of number of calls because of her imagination is something a doctor could use to help with the diagnosis that she is incompetant to handle her own choices. Now if you call a social worker agency, don’t let them leave, till you have a plan.. If you are in an ER, have the doctor put in writing that they are not competenent, when you have it in hand see an attorney.. You can do a lot of things when you are in the hospital… before leaving.. ask that a social worker be assigned to her, to help you get the power of attorney you will need.. Once you leave the hospital, it is hard to get this help.. the hospital wants to send you home, if you say… I am not qualified to handle her illness alone, and REFUSE to leave the hospital.. you will get a social worker faster than your head will spin, it is a legal catch 22 and they will help… they will give you steps to getting power of attorneys, they will have home visits set up to help.. once they have you feeling confident , then go home, I am not an attorney, this is information I have used…. ask an attorney for help.. you can not abandon them at the hospital either.. .. you have to get a team… One thing is sure, you may want to run away.. I had many days with my mother in law and alzeheimers, but I also knew I had the child in her, and that was my responsibility.. If you have to leave and it is understandable.. you have to find someone to care for them, get them in a care facility and keep calling social services till someone helps you. If one does not give you the answers you need, and you can not afford an attorney, keep calling.. I appreciate the post on here, because it gives all of us food for thought. It sounds like Jim was trying to care for mom and listen to her as a mom.. I hope things work out for him, and his mom gets in a place that can care for her. It sounds like Jim didnt have medical power of attorney, or financial, and once a parent is sick this is harder to get , have these conversations with your families. Get advice from someone of knowledge if you are in this situation. Attorney, DSS, Department of AGEing, Thanks for posting the other side of a situation.
Lynda: I appreciate your response to my post and to attempt to supply an alternative (Medical Power of Attorney)To solve his delima in this perticular case. I have been reading the prerequsites in aquireing MPofA and California, The mother that Jim was trying to help, has to agree to his aquasition of the MPofA, before he could aquire one. His mother would definately have said NO WAY!!!. Unfortunately the longer Jim tried to help Mom, Jim found he was trapped in a (no win) situation. Jim did not want to leave his mother alone but the situation was affecting his marriage and all of his 7 brothers and sisters who FLED years ago, as mother had become so impossible to deal with. My heart reaches out to him and his wife, as he is trapped here in Ca. to try to get the charge of grand theft dismissed, as he is innocent of this. As you know, the wheels of the system can and usually move SLOWLY. The situation he is trapped in is SO BISSARE that he is affraid to go near the town he grew up in, for fear the police will find an excuse to re-arrest him. He is LIVING A NIGHTMARE and can’t wake up, and return to Alaska and put this behind them and get their lives back. I can’t for the life of me understand why when the police had made 47 visits that year, to her house to calm her down. Why they would not realize when talking to her that she was not rational. and issue a 5150 on her, to have her mental state evaluated, THAT WOULD HAVE GOTTEN HER (MEDICATION as well as PSYCHOLOGICAL HELP) and none of this would have ever happened. I don,t know if Jim will ever get this purged from his memory, because, as of now this is all he can think and talk about. The longer this drags on, the more it haunts him. I personally would not advise ANYONE to attempt to come in to the middle of Sundowners Syndrome, even with a parent without knowing exactly what to expect and especially if you have been away from that parent for an extended period of years so you don’t trapped like Jim did. Hindsight is ALWAYS 20 20 but my guess is, that Jim should have not told his mother he was leaveing, he should have notified a local sibling that he had to go back to Alaska to save his marriage and business,and left. QUESTION IS——- WHAT WOULD YOU HAVE DONE????. Thanks for your thoughts Jim’s situation. will
Dear William,
I have had Jim on my mind, he is in a terrible situation, I hope he can get good representation, and gets free. Yes, I have said many times, there are parents you need to leave to the professionals, and his is surely one of them. It reminds me of the movie Gas Light, he tried. There are abusive parents, and they don’t turn sweet as they get older. I very well might have made these same mistakes. There but by the Grace of God go I. Jim will not feel a stone thrown by me. I am glad he has a friend that truely knows the truth. My prayers are all of you. Thank you again William for sharing the other side of situation. Lynda
Lynda: Since adding my comments to this site, I have been unable to acces/read/find furthur comments/posts by anyone else and their experiences/challenges with sundowners. Did my comments/posts somehow lock me out to furthur site access??? Thanks Will
it shouldn’t. Look under older post.. It has been quite for a while.. but they are here.
My husband lost his job almost 3 yrs ago. He was sent home by HR bc some of his co-workers had heard him mention suicide and I know they only reported it bc they cared. He worked as a manager over 50 people for 23 years-same jobplace. He would come home and tell me that his boss was always on him about loosing parts or whatever. He always blamed someone else. You would just have to have known my husband 4 years ago. He shopped for the best clothes we could afford, took pride in his appearance. After he was sent home from work, the plant eventually closed. In the meantime, I took him to a phycologist (against his wishes) and he said the co-workers that reported this were lying. He was 54 years old at this time. I knew he was depredded-I went to sessions with him that didn’t seem to help. Then in June-09, he tried to kill himself with about 300 pills-ambien, zanax, high b/p pills-everything in the cabinet, then ran a bath and we just caught him in time before his mouth went under water. He never had to go on the ventilator. They pumped his stomach and he slept 3 days in ICU. We sent him to Brookwood rehab straight from the hospital for a week. He seemed better after his stay, but refused to take any meds for depression. He then started repeating himself alot, called one grandchild by another’s name-ask questions that were very strange-having memory loss about simple things-day of the week or what he ate for supper the night before. I took him to the Memory Loss Clinic in Birmingham and they ran a battery of tests. Doctor said he passed the test and MRI of the brain did not show anything. Months passed, he couldn’t find a job and truthfully, I don’t think he wanted to work. He began to drink beer during the day while I worked and I was very scared he would hurt himself or someone else accidentally. He always said that he could not sleep. Our family doctor and neurologist have put him on several different types of sleep meds. I even took him to the ER last month bc he hadn’t slep in three nights. we sent him to Stabler Clinic which was probably a mistake. All the other pts had alheimers and were very elderly. When he was released from there, they changed him to seroquel and trazadone for sleep. Now, he is abusing this drugs. I caught him taking (or about to take) 4 ambien and 4 zanax at one time. He sneaks and chugs beer, I have caught him. I have kept the medicicines hid for 2 years, but he seems to find them or get them elsewhere. This last weekend, I caught him again-demanded to know where he had hid the med bottle. He took me to it hid in a closet. He said that he had been taking that many all along to be able to sleep. He has had several falls and I always see a new scratch or bruise when I get home from work. I am about to the end of my patience. I am turning bitter toward him bc I am the one working and scraping by to pay our bills and he is here watching TV. I took him to our daughter’s house yesterday bc I can’t handle it anymore. It is affecting my job and I sure can’t loose that. She talked him into signing ppw making her the power of attorney. He goes Thursday to Kirkland Clinic for another assessment. Our money is running low due to medical bills. I have no savings left. I hate to do it, but I am filing for divorce and my daughter said she would get him diagnosed and help, for me to rest and not worry. He calls me all during the night, but he did that before if I was out of town for mandatory meetings for my company. Can anyone help me-him-our family?
Hi Cherry,
You have truely been trying to work this out, but it sounds like he has a mental illness without the right diagnosis therefore you are not getting the right treatment. However, you have to do what you need to. Has he been tested for schizophrenia, and such problems. Has he stayed anywhere for 30 days for diagnosis? I don’t think he knows why he is hiding the pills, or why he is really taking them, and is his thyroid right, to be up all night for nights.. has he had a full chemical work up? .. it sounds as though something in his body is making SPEED, and keeping him up. Yet some mental illnesses will do this to. I would want a 30 day stay in a hospital for stablization even if your daughter is handling it. You need sleep, cut your phone off, if you are burned out, you will handle things worse anyway. It is not the sleep that is the problem, it is a symptom of a bigger problem. What is making him not sleep, I would say to a hospital.. don’t give him pills to sleep, find out why his body is not letting him sleep. I hear you… Also find a representative from the AMI.. alliance for the mentally ill,, you need an advocate .. call AMI and ask for an ADVOCATE… You have done well, it is the sickness.. I will keep you in my thoughts and prayers.Lynda
Lynda,
My daughter has taken my husband to Kirkland Clinic today. They put him on Depakote, 2ml Zanax and a drug similiar to Haldol, I believe. He failed his memory test and/or mental testing. Dr. Clark said he believed him to have some sort of brain disease that is progressing rapidly since he had seen him 2 years ago. He goes back on Aug 4th for more tests. I don’t understand all of his, but I am going up to my daughter’s this weekend so we can have a family talk. The doctor told my husband he shouldn’t be driving and he hit the roof. He still thinks he is fine. Pray for us. I don’t exactly know where the AMI is. Where do I look for one?
Thanks
Cherry
Hi Cherry,
I am glad you have a doctor who is working on it, but if he gets too hard to handle, till they can find out what it is don’t put yourselves in danger. Is he agressive with your daughter, as long as he is not and she can cope great.. But, if this is coming on fast, it can turn worse fast. Have an imediate plan, then an emergency plan. http://nami-eastside.org/support/support.htm this is the website to I believe your local AMI. (alliance for the mentally ill) they have support groups and you are going to need their experience. they know the laws, and how to work around them in emergencies. When you go back to the doctors office ask him to help make a plan like (if her dad gets agressive with her what should we do besides call 911, is it in his file he has this problem, and can they find temporary mental health placement?). If your husband gets mad infront of the doctors that is good, it is a matter or record should you need it in the future. I am not a doctor , nor a lawyer and you need professional opinions. The support groups are great for getting information, they may have tricks on how they handle problems like this. I am sorry you are having such a time, and I am sorry for him, although it may be a blessing he doesn’t know anything is wrong. Don’t try to include him in your talks with your daughter , can someone take him out to dinner. Or can the two of you go out, and have someone visit with your husband. He will not understand and may think you are conspiring against him, and not realize you are both working in his best interest. He can not believe he is sick, no matter what you do, this is not like drug rehab intervention, his mind tells him he is well, and if you try to talk together he might just get mad. If you think he will listen and be part of his medical treatment that is your call. Please contact the support groups at AMI. I am glad they changed his meds, and I hope they work long enough to find out what the problem is. Hang in there, and God bless.. Lynda
My dad is 56 years old. Starting 2 years ago he was eating and I swear he had a stroke. Face drooping, couldn’t talk, walk or function in any way. After he was finally seen in the ER 2 hours later, he was a lot better. They checked him for everything. In the time since he has memory loss, tried to commit suicide, stumbles at times, slurred speech at times. He had slight change in his MRI but I guess not enough for some help. He tries to walk to store and buy beer, hide it in neighbors yards and disconnect gas line under house and about blow everybody up. He does some scary stuff sometimes and don’t know what he is doing. I finally got him in with a great clinic. I wish my daddy was well but he isn’t and I would live for someone to just try and help him. I am so scared he will hurt himself. He did not sleep at all last night and hasn’t slept today. Says he’s not sleepy tonight. He sometimes goes days without sleeping at all. Help?!?
I am so sorry Julie, Somehow each of us missed your post, Have things changed? Did you take your dad to a neurologist? His chemicals seem messed up after the stroke. Is he living with yoiu? Lynda
My 79 y/o husband has end stage CLL. He had chemotherapy 3 years ago to reduce his spleen. His spleen enlarged again with a 250,000 WBC. This time he started on the ‘chemo’ pill ,leukeran(2mg., 3 tabs daily). He has been on it since May. Recently, he had a period of confusion after being awake all night. This was very unusual. He is usually asleep by 9pm. He sleeps well,although awakens about 6am. During the night he was obsessed with the full moon thinking it a UFO. I reorientated him several times but he kept going back to it. He has never been confused before so I was stumped. By morning his confusion continued. He knew the President, the year and month but very confused to the events scheduled for the day, where he was to pick up grandchildren (no plans for it), where the package was he was to pick up a package, (there was none), where our daughter works a where to pick her up (a he had been doing all along.). I took him to ER but all his labs and CAT scan were normal. The Dr. thought it was Sundowner Syndrome. One of the symptoms of leukeran is confusion. His oncologist took him off it for a week. He is better but but still having problems remembering. What do you think?
HI Jean, Sounds like it might have been the meds, If it continues, see neurologist. Allergic reactions can cause allucinations, but I have been allergic to a med and still had to take it. Ask your doctor about benedryl with the med, see if it helps. Let me know how he is doing. Lynda
My 84-year old mother had bypass heart surgery this past Tuesday. Although, she is doing well physically, I got a call from the ICU nurse asking me to come to the hospital the night of her surgery. The nurse explained that my mom was confused and afraid and the nurse was concerned that my mother “might hurt herself”. When I got there she couldn’t understand why her “home” looked so different. I explained many times, but she was too altered to comprehend the reality of her logistics. She kept insisting that she needed to use the bathroom although she was catherized and when I explained she would say “well, I’ll have to hold it then”. In the morning she was improved only to slip into her confused state after dark. The next night I turned on more lights, although it was harsh fluorescent lighting, it seemed to lessen the shadowy, confusing environment. She is due to be discharged to rehab, where she will stay for her physical therapy to regain her strength. Yesterday, uncharacteristically, she had an episode during the afternoon. She remembers everything else, including details I had to think about to recall! It is this one block of time that she is confused about. I’ve noticed that when my mother is overwhelmed she has great confusion, such as the event of my father’s stroke 7-years ago, when he died. She still does not fully comprehend the series of events as they happened. I am hoping that when she returns to the familiarity of her home of 50-years, her confusion will be obliterated, but that remains to be seen. In the event that this is fully a result of “pump head” following bypass that required some time on the heart-lung machine during the surgery, my mom will require assisted living. The nurse helped her to the restroom the other day, whereupon, my mother had no idea why she was there. When she stood up (it was already late in the day and dark), she asked why we were in a different room. We were in the same ICU room she has been occupying for days. However, the lighting in the room DID make the room “look” different. Although, my mom is fully lucid the majority of the time, this seems to be a random kind of episodic occurence that could be dangerous if she were alone (which is the way she prefers living). In fact, she chose to stay at the nursing home for rehab rather than have “strangers” in her home. I am afraid that this change in her living situation (if, in fact, proves to be necessary), will be extremely difficult for her.
Hi Amy,
Things will change for your mom, even if she does well with this surgery. Having these episodes will create danger in her home. The thing about sundowners is it very well can come and go. I am guessing the doctors are monitoring her kidney function levels, feel free to ask. Did you get a medical and financial power of attorneys before this surgery? If not try to explain to her when she is in a good state that these might need to be done, incase she had any other problems in the future, because if this continues, you make sure the nurses document it, make sure the doctors discuss it with you.. get it on record. If you feel you are not set to take her home, or that she is not safe to go home alone, make sure you have a plan. Then when she goes home stay with her a few nights, because she might sound fine at 10am and be up at midnight till 3 am looking for her home, even when she is in it. You and your mom have moved into a new part of life. I am sure this is stressful and may become more stressful. Stay in touch, and read back post to help if something new pops up, please leave a note. Lynda
what happened with your mom? how did she do post op? was she able to go home? did she end up in the nursing home?
My mom just had an episode of diarrhea and abdominal pain. was in the hospital for a few days, by day 2 she was angry, confused. It was attributed to urine infection and hospital psychosis. She was given ativan to help with her anxiety which she takes at home. It made her very confused and she ended up having another CAT scan to rule out a stroke. She returned to normal. she knew everyone and understood where she was but was having difficulty verbalizing. Ultimately she was sent to nursing home for rehab. We have noticed that she becomes angry, confused in the evenings even combative to my sisters and myself. This is where we are and we hope she will be able to come home. as you mentioned she does not want any outsider in her home.
tell me how your story ends
thanks Diane
Dianne, Thank you for asking about my mother. I just got home from visiting her. she is in a nursing home and she had fallen and fractured her left pelvis, had a touch of pneumonia, a urinary tract infection etc. She is 93 and also has congestive heart failure. She has now been in the nursing home for a week. At first she was doing quite well with exercise but she seems to be getting more tired and has lost her appetite. She has a catheter because every time they take it out and put her on a commode she cannot go so it builds up. At this point I am wondering if it is because of her fractured pelvis. anyway, I do not know what will happen. Only a miracle will get her back to her assisted living. she has to be able to walk with her walker without help, be able to walk to the dining room and dress herself etc. So far she seems to exhausted to do it. She is very anxious (as I would be) We just pray for her recovery and also live the outcome to God. Again, thank you for asking. Sharon
Stay on top of the UTI situation… it causes anxiousness. So sorry to hear of your challenges, Lorri
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