Mom and Hospice

[Guest guest]

I've posted a couple of times, but read the daily update fairly regularly and

have gotten a great feeling of support from this group. My mother diagnosed

five years ago with Parkinson's, four years ago with LBD and now they've added

MSA to the list of " Parkinson's Plus. " Compared to many of your loved ones, Mom

isn't doing too badly, and we are fortunate to be in an area where we can hire

really good caregivers for a reasonable price. We moved Mom into our home

almost two years ago into a suite of rooms that we were able to make very

handicapped accessible, so the bathroom is easy for the caregivers to use to

give her a shower, etc. The largest problem right now is Mom's speech aphasia.

She said at breakfast yesterday, " Have you noticed that our conversations are

all short sentences? " I had to laugh, and then she struggled for a bit and

finally added, " but they have more punch. " Mom had a master's degree from

Columbia and taught history for years, served in the foreign service and had

several government positions before retirement and has always been extremely

verbal. Even with her struggle for words, those she can get out are strong and

exact. Mom can still walk some with her walker, about ten feet at a time on a

good day now, mostly in the morning. That is her daily rigorous exercise. It's

about 30 feet from her room to the breakfast table and she walks that distance

with several rest stops twice a day, and sometimes three or four times on a good

day. On a bad day, she can't walk at all or hold herself up in her wheelchair

to eat at the table, " freezes " with her spoon in her food, and has trouble

getting out even a couple of words. She is totally incontinent, and has

frequent UTI's, but is mostly able to control her bowels with only occasional

lapses. I want to try to get hospice to be involved, but when they visited last

time they felt she still had too much time for them to be involved. I think

they are looking for real weight loss as a telling aspect. Perhaps I am

expecting too much from hospice, but I'd like to get some help a couple of hours

a day to assist with dressing, showering and feeding. I think hospice is misled

by Mom's ability to " rise to the occasion " and be articulate (like the quote

above) even though she can only get out that one sentence. Once she begins to

struggle for words she just raises her eyebrows and sits in silence without

responding, but its as though she can think while silent and construct a

sentence or two and then get them out quickly. I can't believe we can't get any

assistance from hospice at this point, and would love to get anyone's

suggestions. , daughter of Augusta, almost 81.