's Dad and Joyce. Help?

[Guest guest]

Hi ,

I'm so sorry to read about what your dad, and you and your sisters, are

going through.

What you describe sounds very similar to what we've been experiencing with

my mother in law Joyce over recent weeks. I wonder, as you have, if she just

hasn't given up and wants it all to end.

She has been living with us for seven years, and we've walked the gamut of

LBD with her -- most of the hallmarks of the disease we didn't catch until

several years ago when it became obvious. In retrospect there were a lot of

obvious symptoms, but we just didn't know what was going on until the

hallucinations and delusions became full-blown.

Last March she had a series of falls and was admitted to the hospital and

then to a nursing home for rehab. When her rehab period ended (after about

three months) she was admitted to the nursing home, but was only there a week or

two when we brought her back home. She hated it there, with a passion.

She's been back with us about eight weeks now. At first she did well. Then

she

began to eat less, drink less, and fall again (this was what she had begun

to do before she fell in March).

About three weeks ago every time she got upright or sat upright, boom, she

would pass out (eyes roll back, mounth clenches and unclenches, hands

quiver...sometimes it lasts quite a while; it takes her a while to recover her

speech

capabilities, and then she has no memory of the episodes). She continues to

do this -- some days are better than others, but by in large, this is her

pattern. It is to the point where it really does take two adults to help her

up

and to the bedside commode and back to bed again, although often there is

just one of us (my husband and myself are her primary caregivers) here.

To be honest, the last few weeks have been back breaking and exhausting (we

also have four children whom we homeschool -- the eldest is fifteen, and

taking some college classes as well as her homeschool workload, and she has a

job

accompanying a local high school choir on piano, so we drive her around and

about a lot -- and the youngest is almost 11 months old; my husband is

self-employed, so that does thankfully allow some flexibility with his schedule,

but we still have to try to make ends meet so he has to work, and we simply

cannot afford to hire help to come in most of the time. Just making sure one

or

the other of us is at home with Joyce 24/7 is a difficult task, and has

resulted in my being pretty much homebound a significant amount of the time).

Sometimes she is able to walk to her table to eat, or go to the bathroom,

but it is nerve wracking as she is so unsteady and will pass out at the drop of

a hat; when I am here with no other adult, I usually will not walk her very

far for fear she will fall and seriously hurt herself. I can pick her up by

myself, but it sure is not easy. In the evening we use a wheelchair and she

comes to our dinner table to eat with us.

We had her checked for UTI (twice, actually, within the last two weeks -

once we had a lab come in and pick up a sample, and the second time we called

and ambulance to take her to the ER. Both tests were negative for UTI -- we

called the ambulance because even though it wasn't an 'emergency' per se, she

absolutely had no mobility at that point and was not even able to sit upright

without passing out),

Her meds have not changed, and at the hospital they checked blood, did a cat

scan, etc....all to no avail. Just blood pressure fluctuations, they said.

And, they sent her home with no specific instructions.

We are pretty much on our own with her -- hospice isn't applicable at this

time, they tell us she makes too much income to qualify for in home health or

respite (although she qualified for medicaid in the nh, so why she doesn't

qualify here at home is truly beyond me), so anything we do is private pay.

She was sleeping a lot just prior to this decline, but lately she just wants

to lie in a dark room (the tv bothers her, she says people being in there

with her bother her, and bright lights are disturbing to her). She's not much

interested in eating, and there are times we do have to hand feed her.

Physically she's taken a dramatic downturn (her balance is nonexistence, her

back

it twisted much more significantly, even, that it was a few months ago, and

she doesn't really remember what to do with her body parts to get them

moving), but ironically (at least it seems so to me) her mind is clearer (she

still

is confused, unable to reason very well, and can't keep track of her

location), and the delusions and hallucinations seem to have taken a back seat.

She

is very weak physically, and seems to be just 'existing'.

Our dilemma now is how best to care for her, since the medical establishment

seems to have essentially washed its hands of her. She says she has

abdominal pain, and feels like she has to urinate often (though when she tries

she

often doesn't). Sometimes she indicates her chest hurts, but this doesn't

last and the pain doesn't continue. She says she is feeling sick all the time.

But, as I said earlier, the hospital didn't find anything of note, and her

physician does not seem to have any insight in to her condition -- granted,

this is not his speciality, but he is the best doctor we could locate in our

area who would listen to us about her LBD, the meds, and so on. The other

physicians we worked with just glanced at her for three minutes, fiddled with

her

meds and sent her home. At least this doctor listens and seems to have some

compassion (though he isn't much 'real' help -- perhaps we are past 'real'

help).

My heart breaks for Joyce because I hate to see her suffer, and I can see no

way to alleviate her situation. We are here for her to help her in whatever

way we can, but it is so discouraging that there doesn't seem to be anything

we can do. Nor is the medical establishment being very helpful. I have been

doing some of my own research online, and have read that LBD patients do

have abdominal pain, cramping, and fainting as part of the physiology of the

disease. But what to do about it, I have no idea.

Do any of you have recommendations about what we can do for Joyce? As I

said, we live in a small town, no geriatric doctors, most physicians, nurses

and

aides are unfamiliar with LBD, and services are limited. What is available

is through medicare -- and we have been told Joyce won't qualify and will in

fact owe a penalty if we apply. I can't figure out why the nursing home

receives funds for her, but we cannot receive services for her, except that the

nursing homes must have some pretty powerful lobbying power in our state

house. Some one is sure profiting from this situation -- but it isn't Joyce.

It is sad, that she wanted to come home so badly, and she is home now, but

her medical providers are distant and basically unconcerned (of course, I'm

not so sure how concerned or caring they were in the nh either). We're doing

our best, but it is draining all of us and spreading us thin.

Thanks for any advice from the group, and : our prayers will be with you

and your dad.

In Him,

Kate in KY

Caregiver for MIL Joyce, diagnosed with LBD

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