another step in the end direction...

[vmmh]

My husband is in the end stage of early onset dementia. He turned 64 last month. He has not been mobile for several months and is home with me, and caregivers while I am at work. He is 99% non-verbal and 100% incontinent of both bowel and bladder. He has on occasion in the past decreased his intake of food and drink for short periods of time. During one of these periods, I placed him on Hospice since I thought the end end was near. Well, he ralied around and improved back to the point of eating and drinking well again. So he was taken off Hospice. BUT, now he has been having these episodes more frequently. He eats a couple bits then falls asleep. Or he takes several bites but doesn't swallow. I've had to take the toothbrush and scoop food back out of his mouth for fear he would choke on it. I increased liquid protein intake to compensate but he has times when he won't drink either. And his urine output has decreased as well.
I know these are signs of impending events but my question is for those of you that have gone through this, how do you deal with the struggle of pushing food and fluid with not pushing food and fluid? I mean, how do I decide how much I should or should try???
He is comfortable, at least he doesn't seem to be in any discomfort.
And of course, how do I deal with the feelings of wanting him to stay alive and be with me vs wishing he would pass so he could be at peace????????
We are in the US so support systems here, or lack there of, are much different than for most of you.

 

[kindred]

My husband is in the end stage of early onset dementia. He turned 64 last month. He has not been mobile for several months and is home with me, and caregivers while I am at work. He is 99% non-verbal and 100% incontinent of both bowel and bladder. He has on occasion in the past decreased his intake of food and drink for short periods of time. During one of these periods, I placed him on Hospice since I thought the end end was near. Well, he ralied around and improved back to the point of eating and drinking well again. So he was taken off Hospice. BUT, now he has been having these episodes more frequently. He eats a couple bits then falls asleep. Or he takes several bites but doesn't swallow. I've had to take the toothbrush and scoop food back out of his mouth for fear he would choke on it. I increased liquid protein intake to compensate but he has times when he won't drink either. And his urine output has decreased as well.
I know these are signs of impending events but my question is for those of you that have gone through this, how do you deal with the struggle of pushing food and fluid with not pushing food and fluid? I mean, how do I decide how much I should or should try???
He is comfortable, at least he doesn't seem to be in any discomfort.
And of course, how do I deal with the feelings of wanting him to stay alive and be with me vs wishing he would pass so he could be at peace????????
We are in the US so support systems here, or lack there of, are much different than for Ismost of you.

All my sympathies to you. My beloved husband died several months ago. Is there any medical opinion you can access? Our GP discussed things with me and then put him on end of life care which means fluids, wiping mouth, and if he would take anything like yoghurt, good, but it could take three hours to get one pot into him. If your husband is comfortable, then stay mainly with the fluids or keeping his mouth moist if he does not want to swallow. Of course you want him to stay alive and be with you. I could no longer wish that as my husband was paralysed and all but brain dead and he was such an active man … anyway, I have never told this before, but I cut a little clump of his hair and put it in a special bag and having that gives me so much comfort.
Keep in touch, posting here is so good there are marvellous people here. warmest, Kindred.

 

[karaokePete]

Hello @vmmh, I'm sorry to learn of the current difficulties.

Problems with eating/drinking can often be part of this stage of dementia.

The Society have a Factsheet about this stage and, in the hope that it helps, you can read it by clicking the 2nd line of the following link. It does mention this aspect of things.

End of life care (531)
PDF printable version

I wish you the strength you need at this time.​