My Mom and LBD/Parkinson's Disease

[Guest guest]

My Mom passed away on Oct 7, 2010. For the last three years of her life, she

was in a health care center here in Massachusetts. She was a wonderful Mom,

giving, caring, unselfish, always putting our needs before her own.

In October, 1999, we took my Mom to a neurologist. She had been complaining of

dizziness. She thought it was her glasses. The neurologist told us that she

had " mild symptoms " of Parkinsons. She was also experiencing anxiety, so he

told us not to tell her of the Parkinsons at that point in time.

Within two or three years, she began to exhibit further symptoms of

Parkinsons......stiffness, rigidity etc on a mild basis. She would also tell us

that she was having trouble remembering things. At one point, we ended up

telling her that she had Parkinson's. It was so hard for us to tell her, and

she was more concerned for *us*. She told us not to worry that we had told her

and that she was okay.

She was living independently in her own apartment, downstairs from my sister (a

nurse), who was the one responsible for her meds, checking in etc. Over time,

our Mom could not figure out her meds (even though they were all marked by day

for her), she could not operate the remote control for the TV, could not operate

the microwave and didn't answer the doorbell. She couldn't dial the phone (even

with the telephone numbers right there for her.) We took her to Boston, to

Brigham and Women's Movement Clinic. No one ever diagnosed her with Lewy Body,

but we figured it out on our own over time. The dr's in Boston tried different

meds (Seriquol and others) but she would have halucinations, seeing animals and

children. She would be up in the middle of the night, putting some things in a

trash bag and sitting on the couch until someone came in. She would say that

she was going to meet my Dad at the ship.

She fell several times, and a couple of those times were out of her bed during

the night (we bought her a very low mattress).

Finally, we had to make the very sad decision to have her go to a Catholic

nursing center (she was very devoted to her faith). It was a wonderful

facility, but when we left her there the first day, she cried and we felt so

awful and terribly guilty!!! We always told her that we would never put her in

a nursing home.

She declined steadily over a three year period. She didn't know us, had no

memory, had terrible rigidity and eventually lost the ability to swallow. We

had to make the decision to stop feeding her. She couldn't even swallow water.

It was heartbreaking. For nine days, she laid in bed, with no food or drink.

They kept her comfortable (but not really...minimal meds) She was coughing,

choking etc. We asked for more pain meds for her but they kept that at a

minimum. We wanted Hospice, but they would not go along with that. All in all,

we felt that our Mom died a long, slow, painful death. No one ever really told

us if it was Parkinson's Disease or LBD............we did have one dr in the

beginning who diagnosed her with LBD and I do think that was what it was.

A beautiful lady suffered for ten years..........we were devastated when we lost

her.