Difficult Times

[Guest guest]

I see that other members are going through this last stage of LBD. I can't truly

imagine at this point how those of you that have already been with your loved

ones as they pass are coming back to this group, but any insight you can offer

from your end experiences would be helpful. I have never been with anyone who

has passed away before, although I heard beautiful stories about my 97 year old

grandmothers last days (she passed on her birthday, surrounded by family). My

grandmother suffered from paranoia and hallucinations in her last weeks, but

other wise was healthy until a week before her passing when she essentially told

her daughter she was going to come to her house to die, and did just that. This

is certainly nowhere near what is going on with my mother.

We moved my mother into our home two years ago when her assisted living

arrangement couldn't take her any longer, yet she seemed too capable for a

nursing home and the dementia units we saw were only going to make her dementia

worse. The first year wasn't too bad, she dropped in her mobility from being

able to walk almost fine with the walker to only managing a few feet at a time.

She has now been confined to a wheelchair since early July. About six weeks ago

we thought she was passing and hospice came in with a prognosis of " no more than

three weeks. " At that point she was only eating a few bites every other day or

so, and having lots of unresponsive periods. Then she stablized a bit, with

eating a few bites nearly every day, and over the past week she sort of " woke

up " and has been asking for food again, although still only eating a little bit

or drinking Ensure to replace meals. However, I think it is enough to keep her

going.

The hardest part is that she is nearly impossible to understand, she can't

complete sentences or come up with words, so all of us are frustrated. Most

days she can sit up in the wheelchair relatively well now, which wasn't

happening six weeks ago. Two days ago though she spoke well enough to declare

that she wouldn't take any more medication that it was " making her sick " and

" I'm in excellent health. " She was taking very little, a trace amount of

Sinemet, Aricept, a medication for negative myoclonus (repetitive, consistent

loss of muscular control), and an anti-depressant. I am most worried about the

effects of the anti-depressant being removed as before her illness she was quite

challenging to get along with and the anti-depressant brought back the loving

mother we'd once known. The only side effect thus far of the medication removal

has been a hallucination that people were coming through the walls to steal her

things. Hospice tells us that there are no patch medications that could treat

such symptoms, nor patches that replace or mimic the effects of an

anti-depressant. Does anyone have any experience with this? How long can this

stage last? Not having any ability to communicate has removed the last vestige

of quality of Mom's life, but the further she sinks the harder she seems to

fight to live.

Last week she slapped her caregiver, and she has begun being paranoid about the

caregivers' intentions. Is there any medication that anyone had success with

that might permit that to be treated? Thanks for any advice.