Message from member Raquel

[Guest guest]

(Raquel had a problem with posting - and I've sent her directions,

but in the meantime here's her message to the board.)

Hi! My name is Raquel. My husband, Sherman, is 75, and was diagnosed

with " some type of dementia, probably Alzheimer's " 4 years ago. In

December 2006, after his condition had deteriorated a lot, he was

diagnosed with LBD. He's taking Razadyne and Namenda for his brain,

and Sinemet for the Parkinson's part of it, but this one on a very

low dose because when he takes 2 25 mg tablets a day, he starts

having hallucinations and nightmares, and gets much more confused.

The doctor who diagnosed him is the director of a research group, and

they don't prescribe medicines neither follow up with the patients.

We lost our neurologist in Nov. last year, but she just kept changing

his appointments until January, when she let us know in a letter that

she was not seeing more patients, except in the hospital. We were

left out in the cold, with no doctor to take care of him except for

his regular physician who doesn't know much about this illness. No

neurologist would take him before July. Finally, on my own I found

one that will see him next Monday. Very frustrating!

Sherman was a brilliant man, with a doctorate in Spanish literature

and so skillful with his hands that he could fix anything, from a

watch to a home -ours- remodeled; also our cars. He's kind,

considerate, loving, with great talent as a writer -in fact, he was

in the middle of writing a novel when the illness struck him; for 2

years after that he struggled to keep writing, but it was so

difficult that he finally gave up. We had a wonderful marriage, with

love, companionship and friendship, and suddenly all of that has

disappeared. He's dependent on me, cannot express his thoughts, and

when he does, is in a whisper and incoherently, and I can't

understand him most of the time. I pretend I do and he is happy. When

I think he is trying to tell me something important, it can take us

30 or 40 minutes of him muttering and I trying to guess for me to

finally understand.

His symptoms started about 8 years ago with the typical (now I know!)

jerking movements in his sleep. Also, he noticed some problem with

his balance, and he fell a few times. We joked about " old age " .

I have been reading the Digests about people taking care mostly of a

parent, and already corresponded with Leona, whose husband has LBD.

That has helped me a lot. It's there anybody else taking care of a

spouse, like we are? sent me a web site for spouses, and

I'll sign up for it. But if I can be of help to anybody else, here I

am! Many years ago I took care of my dear mother, and that wasn't

easy either. I still feel guilty because she died in a NH.

Hope to hear from some of you!

Raquel