How do we interpret end-of-life signals in severely demented loved one? - AgingCare.com

How do we interpret end-of-life signals in severely demented loved one?

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Hubs on hospice now. They gave me a little booklet describing the approach to death--first "weeks to Months", then "days to weeks", etc., what the dying person may be doing. But it's things like withdrawing, talking of people who are already dead, & so on. With Hubs, I don't see the things you'd see in someone who still had their mind. He sleeps more, is less interactive, but it seems like just a general slowing down. None of the interesting stuff, because sadly he can't communicate verbally (and even if he could, I can only imagine what he's "thinking"). He can't tell me, of course. But I do cuddle up to him and speak to him as if he were "all there", which he seems to like, or at least be indifferent to. I suppose this is just another form of the "how long is it going to be" question. Sigh. I sometimes think he's just about to die, and other times I think he'll go on for a long time. His heart is strong, his lungs are strong, his upper body is still very strong, but he's totally incontinent and has no memory at all and spends his time sitting in his wheelchair, mostly sleeping, or in bed, sleeping. Is there any way to tell, in someone who has severe dementia and is non verbal, where they are in the approach to end-of-life?

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The booklets hospice gives out are just a guideline for what to expect. You may not see any of those signs, or you may see some or all. Everyone's different. For instance, I work in hospice and I've yet to see someone talking to dead loved ones.

When someone stops speaking and is kind of in a twilight sleep indicates to me that the process has begun but this is just from my own personal experiences. Not eating or drinking anymore are signs too. And because the person has stopped eating or drinking they don't tend to void anymore after several days of not eating or drinking.

One sign I pay attention to and have seen in almost every case I've worked is a bluish/grayish tint to the fingernails. This indicates oxygen not being able to get to the brain because of the chemical process that is going on in the body as it begins to shut down. I've seen this up to several days before the person has died.

Another sign I take note of is if the skin of the person is spongy and slightly damp. This is another chemical indication that the body is shutting down. I've seen this within 12 hours of death at the most.

We hand those booklets out because they make us but I always tell families that it's not a bible of what to expect and in what order to expect it. People tend to look at the book then compare what they've read to their loved one when it should be the other way around. Look at your loved one, see what he's experiencing and then look it up in the booklet. The booklet is for reference only.
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I just went through this.
My Husband had Alzheimer's for about 10 years, was non verbal the last 6 and had stopped walking the last 2.
We had transitioned to all pureed foods and sleeping about 20 hours a day most of the time.
All liquids had to be thickened to the consistency of applesauce or pudding.
At the very end he just stopped eating and drinking.
The mucus does begin to collect so the sound of his breathing will be like he has a bad cold. This is also called "Death Rattle" It is not painful for the person. Do not try to swab out the mucus as that can cause gagging and swabbing would be more uncomfortable.
Turning him on his side may relieve it a bit.
Ask the CNA or Nurse to show you how to cushion his joints, legs, arms, and back with pillows to make him comfortable.
When he stops eating and drinking do NOT try to feed him or give him water. His body does not need it and trying to feed him can cause problems like aspiration or vomiting or if he does begin to digest the food it can cause a bowel obstruction. His kidneys and bowel will begin to shut down since the body does not need food at this point.
None of this is painful.
Morphine is available. Do not be afraid to use it.
Since other medications my Husband was on were stopped when he stopped eating I began to give him very small doses of morphine to help him relax. Odd thing is it was the first time in about 1 year that I was able to move his left arm easily. He was relaxed and contortions were able to relax.
My Husband passed quietly in his sleep 4 days after he discontinued eating.

There are many pamphlets that Hospice gives out describing End of Life. Crossing the Creek is one. When Death is Near is another. I think these can be both found on line.

Be strong, take the time to cuddle, hold hands, tell him you will miss him but tell him you will be alright. Let him know it is OK for him to go.
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I don't have any wisdom to share. I did want to tell you that I was touched to hear you cuddled wirh your hubby and talked to him. That is so loving and kind.
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Thank you all for your helpful input. I did re-read the description of the stages of Alzheimers, and assuming that his non-Alzheimer's (as far as the neurologists are concerned) non-specific dementia progresses in much the same fashion, I'd have to say he's definitely somewhere in Stage 7. He hasn't ambulated independently for a long time, at least a year. He can't really transfer himself anymore; He pretty much has to be lifted from one seat to another. He's incontinent both ways. He can sit up straight and hold his head up, he talks nonsense quite a lot but comes out with short sentences such as "I love you" and "you are beautiful" and "thank you" and some other choice phrases I won't repeat here--I call them his "recordings". He can, and does, smile, and even hums and sings along with short snatches of familiar songs, a word or two here & there interspersed with syllables which might be similar to the words of the song. He may reach for me and put his arm around me (or the caregiver, he doesn't really make the distinction). For the last week he's been falling asleep in his wheelchair, even in the middle of meals, has been running a low (99-100) fever intermittently, had a couple episodes of diarrhea & may have had a headache--he'd touch his head and/or frown if I touched his head, but of course you can't ask him if he has a headache. Many theories have been put forth by the hospice nurses & caregivers--dehydration & electrolyte imbalance (we are giving him Pedialyte), stress of temp differential of going outside (hot) & coming back in (cool) even tho he loves floating in the pool once he's in, he tries hard to keep us from putting him in every time which must be stressful. He is very strong in the upper body still. I guess I just want to know if he's entering a different phase with all this sleeping, low fevers, and also seemingly a lot of phlegm down in his breathing when he lies down, although if he's sitting up he can clear it (we give him albuterol treatments). Sigh. Thanks for reading and listening to me going on and on. The hospice nurses come during the day and he is sleepy but his BP & pulse & O2 & temp are always okay, so they comfort me and tell me he doesn't have an infection. He eats and drinks but almost always has to be fed now because he can't figure out how to get the food to his mouth without help. (If it were up to him, he'd stop eating and drinking because he doesn't know how to manage it anymore, but he happily eats all his food and makes a face like a baby bird when he wants another bite.) No contractures at this point. I think I just need to breathe and let the caregivers care for him.
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Dear superstring,

My thoughts and prayers are with you during this difficult time. I know its hard. I would talk with a nurse or doctor or even a psychologist about what to expect. Everyone is so different. I sometimes think even the doctors don't know the answer. I was told my dad had 6 months to one year and he passed two days later. It was a terrible shock. I never expected my dad to pass so quickly. Not that any of us are truly ever ready for that moment. Thinking of you.
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I'm sorry for what you are going through. Hospice is typically provided to dementia patients when they reach stage 7, even though many patients live longer than 6 months. Here is more information about stage 6 and 7 that might help you https://www.alzinfo.org/understand-alzheimers/clinical-stages-of-alzheimers/
Blessings,
Jamie
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You sound so sweet---cuddling with your hubby--even though you think he doesn't "know you". We really don't know what goes on in a dying person's mind. I often wonder how much MORE my daddy's eyes were "opened" as he was dying, making that transition from one life to another. (My personal beliefs, no attempt to offend if you don't believe in the afterlife)....Hospice was a godsend and helped us all through the stages and gently guided us. At the very end, daddy couldn't swallow, and acc to his wishes, he was not tube fed nor IV fed. His urine output was the key thing that clued us in. He was living on a couple of popsicles and liquid morphine. When the very last days came, he was in and out of consciousness, calm and quiet. We were all there when he passed. It was peaceful, filled with love and dignity for a life well lived and a loving, great man.
We did talk& sing to him, even when he was "asleep". I don't know how much that helped him, but it helped us.

I can only hope for such a passing as his for anyone I love.
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In my husband's case, he went through the end stages exactly as described in the Hospice pamphlet. This was a great help to me.
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My mother just passed away, but did not have dementia. The first signs I noticed towards the end were she was becoming less verbal, eating less, always thirsty, and eyes staying half closed. The last two days, her eyes stayed closed, she no longer ate, would only suck on a sponge for water, her breathing was more labored, and she wasn't communicating with me anymore.  I did keep talking to her though because they say that hearing is the last sense to go. It is a difficult process to watch, but with morphine, Dilautiid, and Ativan, it kept her comfortable, which is what hospice is all about.
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My dad would be gone a year on Tuesday and my mom 16 years on Saturday. I weep when reading all this. It is difficult. Both died in good hospitals, but it is my dad that still has an impact on me. Whilst my mom was perky and about to be discharged the following morning, she passed during the night before being discharged, which came as a shock, due to her laughing and chatting to us the night before. She had a 'tired' heart. My dad with dementia, was painful. His last night, he was so unbearably quiet. He had a stroke a week earlier and it affected his vocal chords and he couldn't speak. It was so hard for me, as he couldn't say what he needed. He just stared at me without blinking and he was gone a few hours later. I felt he had reached a calm and acceptance.
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