Re: hard question

December 29, 2002

I can share a couple of experiences regarding this. My fathers younger sister

died last January from Alzheimer's. This was around the time that my father's

condition was worsening, and he hadn't been diagnosed as LBD yet, just as

dementia. Mom struggled with what to tell him. She ended up telling him that

she had passed away from a terrible bout of pneumonia caught after a

fall.(You know how frail little old ladies are!) He knew from before that she

had Alzheimer's, but we were afraid it would scare him if he thought she died

from it. He knew he had tested positive on dementia, so we wanted to play

down that connection.

Then, when the LBD diagnosis came, the Doctor told them together along with

my sisters who were there, who had raised the question, could this be Lewy

Body? When I had seen him last time before that, it broke my heart because he

would be fine for a little bit, and then, poof, off into another land. Then

he would look at me with this sad confused look, and I knew that he knew,

that something was very wrong with his mind. I think knowing the truth of

what he's dealing with helps him. My mother, on the other hand, still thinks

he'll get better.

Good Luck

December 29, 2002

Judy

I went to every neurologist appt. with my dad and each appt. when asked

if he noticed any changes he always answered with a no as I was shaking

my head yes. One thing about this diease is it can fool everyone

involved. I was always open with my dad and talked about the disease

and struggles in with him there. I think it is a persnal opinion and

situation, which every circumstance can be different. I know for

myself, I wouldn't want anything kept from me concerning my health. Let

us know of your final decision.

Sandie

Des Moines, IA

December 29, 2002

Judy,

When my mom was diaganosed back in January the doctor told her she had LBD.

He said there is no cure. He said most likely she would spend the rest of

her life in a wheel chair and she cried. Since that time she was able to

walk again until Sept 13th when she fell and fractured her hip. She knows

she has Lewy Body but doesn't really realize it won't get better. She is

still looking forward to the day she will get better.She has never bothered

to ask for details and she knows it affects the brain. Every medical person

she comes across, mostly Physical Therapist tell her she will get better

again. They don't know a thing about Lewy Body and it irritates the hell out

of me. I somehow didn't think I should tell her she will not get better. I

regret it but then again who am I to tell her she won't. I just can't do it.

She is in denial, my dad and brother are in denial and my other brother is

somewhat in denial too. If she were to ask me to be honest with her and tell

her all I know I would tell all. Don't know what else to say. Good-luck.

Shirley

>

>Reply-To: LBDcaregivers

>To: LBDcaregivers

>Subject: hard question

>Date: Mon, 30 Dec 2002 03:30:21 -0000

>

>Hi all, can anyone help with the question of wheather or not to tell

>the person with lbd that they have it? my dad seems to be in fairly

>early stages, altho there are some things looking back on that may

>have been due to lbd. we have kept him from driving since he was in

>the hospt. in april. he has had two recent cataract surgeries and it

>seems some kind of health problem so it has not been too hard to

>stop him. he sees the eye dr. tomorrow for the lens fitting. once he

>is able to see (or not) he is going to be hell bent on driving. the

>fact that he can sit in the neuroligist office and not know he is

>being diagnosed (one time he actully thought he was at the eye dr.)

>makes it hard to know if he will even understand it and if he does,

>will he accept it! i can't seem to keep from blabing on when i

>start. i guess i haven't really had anyone to talk about these

>things with that has knowledge or understanding. if you are still

>reading, thanks. judy

>

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December 30, 2002

Dear Judy,

After we had the LBD diagnosis we explained it to my father and,

certainly for him, it was exactly the right thing to do. He was able to

" blame " his problems on the disease rather than just think that he was

being particularly confused and stupid and that it was his personality

that was a problem. It enabled him to keep his personal self respect

right up to the time he died, because he knew that no one would blame

him for having a disease. He used to forget what it was quite regularly

and so, maybe every few days would ask me to explain it to him again.

Sometimes that was quite fascinating, because when I got to the bits

about him hallucinating, he would say something like " Oh yes, that's

right - I can see a little girl sitting on the sideboard now, just

beside your shoulder " . I could then demonstrate that it was a

hallucination - a distortion of his vision because of the " lewy bodies "

which were interfering with the way his brain was interpreting what he

was seeing.

Knowing that he had LBD meant that he did not feel embarrassed or stupid

when he forgot how to do things - on one occasion he forgot how to walk

and I had to teach him how to put one foot in front of the other, at

other times he would forget where a room in the house was, or how to

read. These skills would come and go and he was able to be reminded

that if he was not able to read at all one day, that maybe the next day,

he would have no difficulty.

I took him regularly to watch football matches, which he loved, and he

was able to explain to some of the people he knew there, that he had a

" brain disease " . It seemed to give him a great relief to know and to

understand, at least in part, what was happening to him and to be able

to talk about it. Of course there were many days that he was not so

lucid and was totally convinced by his hallucinations or the various

paranoid type notions that he had at the time, but each time he came

through an episode, afterwards, he could hang on to the fact that it was

not " him " but the disease that he had.

This is only my personal experience, but I hope it helps.

In message <auoekd+10a5reGroups>, " jrazin "

writes