Now what do I do?

[Guest guest]

Hi All,

I'm at a loss as to what to do. I'll try to fill in the details best I

can. Last June my Mom Judy had an episode where she was sent to the

hospital. She refused to leave the emergency room because she was in

such pain. It took several doses of MORPHINE to quiet her. (You'll

notice lots of LBD redflags as the story progresses.)

Background-Mom had been sole caregiver for my grandparents for the last

12 years and completely isolated herself. Blinds pulled, wouldn't talk

to anyone on the phone, in jammies all the time, ignored personal care,

accused everyone of stealing or being 'out to get her' etc. Both of her

parents passed away within two years of each other. She is only child.

Strong independent, business woman that worked for GM as a buyer of

aircraft parts, retiring at 53 to go to nursing school. Divorced.

Back to the story, the MORPHINE was thought to be causing her strange

behavior. She talked about Alan Alda having a birthday party there.

They were so noisy she almost called the police, etc. They changed meds

to DEMEROL thinking that would be better, still weird behavior. They

ran tests and found nothing wrong with her. After a week in the

hospital they said it was dementia, probably Alzheimers. She could only

be released to a nursing home.

Once she was off the pain meds at the nursing home she did pretty well

for awhile. The psych doc said she had dementia and put her on ARICEPT

and SEROQUEL. He asked that she be evaluated by a psychologist. He said

she didn't have Alzheimer's but LBD. Mom decided that meant there was

nothing wrong with her and began refusing meds. Her behavior starting

getting worse again, so she was taken to a behavior unit for an

evaluation.

They began giving her RISPERDOL. Her behavior became mildly better, but

she began to decline physically. After a couple of months she was weak

and trembling, very needy, unable to go to the bathroom by herself. She

was constantly on the call light or yelling out to have help. Back to

the behavioral unit. They increased the evening dose of RISPERDOL.

Within days of her return she began declining even more. Her color

changed to a grayish yellow. She refused baths and grooming. She began

collapsing with her walker saying she was falling. She would constantly

wanting in and out of bed. To the bathroom and back. She was

incontinent with urine and bowels. So I asked if the RISPERDOL could be

causing all this (gee, wonder?). So they decide to take her off

everything.

It's been a couple of weeks now and she's back to being a real pain.

She's demanding, hard to get along with, yells out for the nurses, says

she's in pain (somatisation), is refusing any meds even vitamins,

incontinent, you name it. So back to the behavioral unit. The docs

aren't receptive to the LBD diagnosis, they just think she's crazy.

I'm the first to admit that she's the most difficult person to get

along with that I've ever met. It's her way or no way. There is no way

that I could take care of her so can't bring her home. She's in an

excellent facility that care about her and my family. She has too many

Doctors saying too many different things. Can't get everyone on the

same page. Looks like that if she is going to be treated for her

behavior issues then she'll decline in her physical areas. Any

suggestions?

Donna Jean