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?
Blessings,
Jamie
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.
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.
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.
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.
Remember that each person is an individual and what they can and can not do is just a small part of the process.
My Husband was non verbal for the last 6 years..he should have been able to talk. He fed himself up to almost the end. Even though he may not have known" who I was whenever I left the house and when I returned I would tell him..."I'm going"..then I would tell him "I'm back" he would look at me and give me a kiss. When I got him into bed he would give me a kiss good night. He would hold my hand as often as he could.
So forget the stages the decline will be what it is. Sometimes it will be slow and steady then sometimes it will seem like a sudden drop in function.
Just enjoy the good moments for what they are.
And most difficult of all try to remember that this is not the vibrant, loving, intelligent woman that you married. Through no fault of her own her "brain broke".
And as I mentioned just reassure her that you will be alright, and give her "permission" to go when she is ready.
This post was a bit harder for me to answer since it is still a bit "raw" but I think not enough information is given about what to watch for at end of life. At least when the info is needed.
You might be given a pamphlet when your loved one starts on Hospice or the Doctor might give you info but if the information is not necessary at that moment it gets shoved in a drawer. Or what you gain form the info is "absorbed" differently. And you always wonder about others experiences and it it really is like it is in the books. Hearing it from someone that has "been there..done that" makes it more real.