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What happens towards the end of life with a Dementia patient?

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My mother lived eight years with AD and remained home until she began having repeated UTIs, each affecting her mobility to lead to falls and subsequently I had to make the decision for relocation to a memory care facility. In her final days, she began refusing meds, foods, and liquids one week before her demise. The hospice agency I coordinated care with were wonderful and helped both my family prepare for my mother's final days. She peacefully passed away in her sleep in May, 2016, two months after her placement.
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Thank you Malachy2. I needed that.
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Dear pargirl
You are a valiant woman. When Steve Jobst was at the end of the dying process,and transitioning over, he said: 'Oh,Wow!" 3 times! Your Mom will experience the same..only she may not be able to express it as he did.
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mom was put back on Hospice today. She is declining again. She DOES know me.....she reacted to my kisses. She's in no pain and that's good (at least when I asked her she said no) because she's been on pain meds for 8 years for her back. Her eyes are narrowing. Color not so good just in the last 2 weeks. I told her today that I loved her but it was ok to do what she wanted to do that my dad and I would be alright. I hope.....no I PRAY that her sister, her mom and my sister will come get her. This is torture and I don't wish this on anyone. Love you guys. God Bless
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Thanks for all responses. My mom is a little different. She is wheelchair bound and has been for 2 years also is non verbal. She also has been on hospice for 4 years because she has been declining and could be kept on hospice until recently. Seems like she has plateaued and they took her off of hospice. She doesn't eat by herself but still eats most meals but does not feed herself. I have instructed staff not to force feed her. Hospice nurse that I trusted very much told me that even if they are eating that could be a response to habit of eating all your life (Pavlov's law if you will) put something near your lips and you will open. She also told me which I already knew due to taking care of both my inlaws that some people have a rally period. Certainly not cured but just look and seem to be "better" which I think she is showing. This has been a long journey for my family.....around 12 years with this terrible disease of dementia/Alzheimer's. Don't know what is around the bend. So hard to know what to pray for. I love my mom but I don't want to see her like this. She still knows me or that's what I want to believe. I hate it. Good luck and God Bless to each and every one of you and your loved ones.
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I really appreciate this question. The man I take care exhibits these symptoms for 10 months...every month gets worse and worse. He is so cold all the time, his hands are cold/clammy. He does not allow doors/windows open even when it 90 degrees he is cold and locks off air conditioning at night. It is so hot and stuffy I lay in bed sweating at night and my heart pounds. I fall asleep from exhaustion. His legs and feet look red/purple on and off. His toenails are long with nasty yellow stuff underneath. Adult podiatry does nothing but trim his nails. He sleeps 90% of the day, only gets up to eat dinner and often chokes.Then horrible burping and nausea all night long. He threw up all over the bathroom while I was at work, didnt call anyone for help. I had to scrub dried puke after a 9 hr workday. I now have full time job (so I can move out and get my life back) but his demands and problems are draining me. He fell and smashed furniture while I was at work. He looks like the walking dead. It is frightening to me to see this..and I cant deal with it anymore. I am not a relative, I was forced to be a live in caretaker or he will retaliate. His family wants nothing to do with him. I know the end is near, but don't know how long. He is lingering, a danger to himself and others and refuses to go to Dr. I fear I will find him dead. Since he made me his responsibility, can I call Adult Protective Services or request a care assessment?
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This makes me so sad to read all of these answers. I can only assume my mom is in the last stages of dementia. She appeared to be doing well 5 months ago. And then the lack of care and social interaction was taken away by uncaring POAs and I have watched mom's steady decline. Why did this happen so fast - is this typical of dementia? How do you cope with this, when I am forbidden to help her by the POAs? I am watching her basically starve. She always has a blanket wrapped around her. She is always sitting in the same spot. She complains of pains in her neck, headaches, nausea. No one will take her to the doctor; much less the hospital. She repeats things that aren't true, remembers things one minute and forgets the next. No one at the assisted care facility seem to care either. Are these all symptoms that my mom will die soon? She looks so sick; and that's because she is.
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Riamac2 - each dementia patient's illness depends on other illnesses and the way their brain has been affected. Each is unique. Changing clothes many times per day is normal depending on what is going on in your loved one's brain.
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Breathing becomes raspy;no appetite. At this point, food does harm. Body is breaking down,cannot handle food. Toes become cyanotic often a day or so before death.Death is not pretty, but it is beautiful. My husband's passing over to the other side was so quiet:gentlely stopped breathing. Happy that I was there with some of my children to be with him as he faced this new frontier.
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Christine73,
thanks .
someone besides myself has found hospice out to be a bunch of medical community dregs that can be dangerous to your well being .
the first report from hospice to my aunt ednas doc was that her situation was all neglectful . rotten food in her fridge and soured food lying in bowls around the IL appartment . this was not true and potentially very incriminating to ednas carers . the hospice loser was a wino in paragon indiana a year prior . she was a " welfare - to - work loser who would say anything to justify her position .
thats not taken easily by hard working american citizens who are on the receiving end of this tom - foolery ..
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2 questions: about how long is the life span of a dementia patient and is taking clothes of or changing them 3/4 times normal?
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All movements will cease, there will be a scare with no movement of the pupil, and death will ensue.
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Hospice was the dreaded decision and you may have residual thoughts after the passing a well, but it comes down to quality over quantity. Extending life isn't necessarily living. We have to put our loved one's interest in mind even though we selfishly (although all due to loving reasons) don't want to let go.
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My father-in-law passed away 5 weeks ago. He started showing signs of Alzheimer's 5 years ago at the age of 92. Being that it started so late in life, it progressed fairly quickly. At first, the decline was slow. The last 2 years we could see an almost monthly decline. He did start getting a little mean the last 2 years. But, that's because he was weak and tired and didn't want to do his daily routine stuff. Toward the end, he got more frequent UTIs, he began aspirating his food and drink, he couldn't swallow well, all of his food had to be puréed. He got aspiration pneumonia. He got so weak that he couldn't walk, or even stand. He slept 80-90% of the time and refused food and drink. At that point, it was only a few days before he passed. He passed comfortably in his sleep at 3am in a hospice facility.
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Our precious Papa had dementia for 10 years. I had him in assisted living then had to move him to one of the secure Alzheimers units at the same facility. He was there 13 months then his other hip broke so had to have surgery and go to a nursing home. My identical twin sis is handicapped and disabled and lives with me. I take care of her and had to continue at my paying job to provide for us. Papa was physically the healthiest person on the planet so came through surgery great and hip healed quickly. Spent almost three months in nursing home and declined rapidly. You don't have to wait til the last minute or near the end to call on hospice. I engaged their services the last eight months he was in the Alzheimers unit and they continued at the nursing home. They were a great help to Papa, staff at both facilities and us. He did stop eating or drinkiing anything. I would take my lunch break and go see if he would eat for me and went after work for his dinner but he just refused. However, he had always loved Snickers candy bars and Coca Cola and through the years I had seen to it he had these and never ran out. Even when he wouldn't eat or drink anything else, daily through the day before he died, he would eat the Snickers and Coke I took him! He passed away March, 2014 at the age of 92 and was down to 100 lbs. on a 6' frame. Hospice was wonderful. God bless all those who take care of our loved ones and God bless all of us who are caregivers.
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Good question! Even better answers! Not something we like to think about, but for those of us with fragile elderly relatives who have dementia but no defining illness, this information is really helpful. There are days when I think my mom is on her last leg, then other days when she is quite good. These comments are really helpful. Thanks for sharing.
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Here are some signs of end of life. Hands and feet very cold. Coldness even extending to lower legs and arms. Not eating. Not going to the bathroom. Hallucinations, or seeing/talking to relatives who have already passed on. If a disease like Alzheimer's is affecting the brain, the person may (or may not) become unable to swallow or walk. As for how to prepare, look at hospice organizations/hospice facilities NOW, before you really need them. Ask friends or associates for recommendations. They're not all the same. Hospice is supposed to be wonderful, but I've seen some terrible ones. Avoid that by doing the prep now. You may never need to use them, but if you do, you'll be glad you made an informed choice. Good luck and God bless. I'm in the same boat with my precious mother.
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Hubby eats; but has trouble swallowing and is constantly clearing his throat. 93 and dementia for about 5 years. He can walk and talk. Hasn't fallen, no UTI's. Blood pressure up, though. Going to GP today. Anyone else have throat problems besides swallowing?
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The community has responded wonderfully, bookworm54, so read all of the responses so far.

My vote at this stage is to always go for comfort. The body shuts down in last stages and people often have a hard time letting caregivers know how they feel. Watch the body language to see if anything indicates pain. Consider hospice care if hospice is not already involved. They know what to watch for to ensure comfort.

Try to take care of yourself, too.
Carol
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My moms funeral was yesterday. About a month ago she was hospitalized with bacterial pneumonia. She had dementia and oxygen dependent copd. The dr suggested we call hospice. Once back at the nh she was better for about 2 weeks. In Mother's Day my daughter went to see her and that was the last time she woke up and communicated with anyone. On May 18th we were called in at 4 am because it was eminent. All family got there throughout the day. At 2 am on the 19 th she took her last breath. Hospice has kept her comfortable through this and the nh gave us a private room so family could be there comfortably.
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Wonderful response. My thoughts exactly. It's about letting dad go on his own terms and keeping him comfortable. As an only child, I have nobody to help with decisions, other than dads brother who has criticized everything I have done. He seems him about twice a year. Actually he came last week to the AL. Told other family members that dad didn't need to be in a home...he was fine. He commented that uncle's watch was nice! Thankfully I have a wonderful elder care attorney for dad that I go to when I question myself. It's so hard right now, but nobody ever said life would be easy. As long as dads last days are comfortable, that's all that matters.
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Correction: I meant he passed away on November 20, 2015!
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My dad passed away on November 20, 2016, ten years after his Alzheimer's diagnosis. He had been very healthy for 16 months prior but my mom reported that he had been sleeping through dinner most nights for about 3 weeks. Then he got aspiration pneumonia which is common for patients who can no longer chew and swallow properly. His fever went through the roof and the nursing home sent him to the ER. From there he went upstairs to a room and within 2 days the staff suggested that his status be changed to hospice care. In other words, he wasn't responding to the antibiotics and the pneumonia wasn't getting better. They kept him very comfortable for another 5 days and he passed away in his sleep. The hospice setting within the hospital was wonderful. We were happy that he didn't suffer.
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My husband changed again, as he had so many times during his 9 year bout with Alzheimer's disease. This time, he stopped speaking, but followed directions to get up, use the toilet (aided), he fed himself, wandered around a bit and appeared content.
Because the memory care unit was so much more active than he,I moved him to a 10 bed assisted living home. He made the change easily, he had a private room near the kitchen hub of the house.For the next 6 months, he ate less and I had a difficult time convincing the staff to let him choose what to eat. This was his only active choice during the day. I had to call in a not for profit hospice agency to evaluate him and place him on palliative care. That is care for comfort, not for rehabilitation. We weren't going to make him better. They placed him on hospice care so the agency had control of his medical decisions, not the home's physician.
Sometimes a hospice agency that is for profit, aims to keep the patients alive as long as possible, spoon feeding, force feeding, using liquid foods etc. I disagree. Let the patient have as much dignity at the end of life as before. This is about the dying person not about us loved ones. Let them decide when it is time to let go.
Seven months after the move, I was called on a Sunday morning, that my husband refused all of his breakfast. The caretaker fed him 4 spoonfuls of chicken broth(for breakfast) and he pushed her hand away. I called hospice who sent over a bed that could tilt his head upward to prevent the patient from choking. My husband never left that bed. He stopped eating and went to sleep. He slept for three days and then he stopped breathing and died peacefully.
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My mom ate till the very end, and actually died with a spoonful of ice cream in her mouth...(her favorite food). When she didn't swallow that, I knew she was done. My signs that she was getting there, (although I didn't know it at the time), was when she could no longer walk...even with assistance. My mom got very stubborn and mean towards the end, biting and pinching, so I thought that her refusing to take a step on her own was just her being mean and giving me a hard time. I asked for hospice help and got someone 2 days before she died. Even those 2 days were a big help...they even cleaned her up after she died, which I would never have been able to do. She died at home, which is what she wanted.
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I'm so glad this post came up today. For the last few months, dad has had to have an aide live in his room with him duevto agression problems with other patients. He's fallen twice in a week, with an aide. I noticed that he would seem obsessed with when his next meal was, even though he had just eaten. I watched him eat....constantly putting forkfulls of food in his mouth and really not swallowing. I told the aide to watch him. Yes he says, he eats so fast all the time. He tells him to slow down because he chokes, but dad doesn't listen. Dad also lost 14 lbs since August. I went to the Meridian office to order a pad to put next to his bed in case he falls out again and mentioned the eating issue. I had no idea that what he`s doing is called pocketing. It's an end stage dementia problem. They spoke with his doctor who didn't know about the eating issue and she agreed that dad should go on Hospice. He will enter today. It will be a relief for me knowing he will be cared for. To those who have recently lost loved ones, my prayers are with you. Please keep my dad and me in yours.
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I agree with the hospice decision. My mom just passed a month ago. We had been having problems with her eating and taking pills for a little while, but the few weeks to a month before she passed, it was really bad. it wasn't that she forgot how to eat or swallow, she just made the decision that she didn't want it. We tried to get creative but she was stubborn. We begged her to eat or drink and she would say she would, but then when the food got there she refused it. We as a family had to make the decision for DNR/DNI and then the suggestion of hospice was made. With her not eating and we would not have wanted a feeding tube, this was the next logical decision. We were with her every moment until the end which was about a week and a few days later. Hospice knew exactly what to do and they kept her comfortable which was our main goal at this point. Of course, I'd rather have her here with me, but you have to watch and listen and try to tune into what they want, and I think my Mom decided it was time. Other decisions could have been made, but it wouldn't have been what she wanted.
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My Mom ate less and less, then could not walk or stand anymore and there were frequent UTIs, coffee colored urine. This went on and off for a year and a half and many unsuccessful rehabs. She was put on hospice and was bedridden for seven and a half months at home. I knew something was changing when she stopped eating solid foods, then no foods, only a little liquid and then refused anything about 3 days beforehand. I kept offering her foods and drinks, but she sent them back. I did not press her to eat or drink the things I put on the tray if she did not want it. I absolutely recommend hospice. If you call they will evaluate the patient and put them on hospice. I could not have gotten through this rough time without them and they were wonderful and supportive, kept Mom clean and pain free and comfortable the whole time.
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My Mom became sick with pneumonia and Urinary tract infections more often, would refuse food and liquid for the most part, We chose Hospice care for the last month of her life. I knew in my heart that we were done, she was tired and just wanted to rest, it is not an easy choice but you will know when the time is.
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As the brain fails memory and cognitive skills go away. Eventually many patients begin to have trouble swallowing and lose interest in food and fluids. This is usually a sign that the end may be near. If you have a loved one getting close to this stage I would suggest you check into hospice care. Hospice can make the end of life relatively painless and keep the person comfortable.
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