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The story about my daughter goes on. She has been during last summer in MOskouw
( she is a student slavonic languages) and she met there an Englishman and they
are both much in love with each other. He is now with her in Amsterdam and they
visited me in the hospital. When she first told me, she said she had realized
and thought over that maybe she was going to live in England, but nevertheless
she could visit me often and she asked me to say honestly wether I did not
prefer to have her more close. And I was glad to be able to be honest saying,
her happiness was more important for me than the frequency of her visiting me
and I had seen very clearly she was happy, returning from Russia. We had a nice
evening meeting each other and her lover is a very nice young man. And he did
tell he was grown up with a disabled mother too, his mother suffers from
acquired deaffness.
I now feel the relation with my daughter is better because of the difficulties
we had, because these difficulties forced us to communicate.
 within a family it is important not to have thoughts about each other like she
thinks that I think....etc.

                       Ida Kamphuis


Aan 28-9-97 9:22, in bericht <[log in to unmask]>, Helene Marcy
<[log in to unmask]> schreef:

> Ida Kamphuis, you wrote:
> >My children are grown up now, but whenn I started having Parkinson they were
> >chidren yet. I wrote this mail to the list on a momemt the object of how
> relate
> >with chidren as a PWP. I am sure that having the children did give me to
> start
> >with motivation to go on and not become depressive, but to make life
> worthwhile
> >and so giving the children a plaesant home. I hope you recognize things in my
> >story and find some optimism out of it. I am convinced my children are
> mentally
> >grown stronger, because of my disease.
> >
> >
> >Sons and daughters,
> >how do we communicate with our children about disease.
>
> And later:
>
> >My daughter was very angry with me. She did
> >not want to
> >hear anything that referred to my illnes.
>
>
>
> I reacted much the same way to my father's parkinson's as your daughter did
> to yours.  I am still not sure of all the reasons why I acted as I
> did--part of it was probably normal adolescence, part of it might have been
> fierce denial that anything was happening. Who knows? All I know is that
> for years I was more impatient with him than the other members of my family
> were, and refused to face the fact that he was ill.
>
> Eventually (in my early twenties) he and I came to an understanding (via
> tearful discussion) about our relationship, and about the ways in which we
> both had acted. I think that he was able to forgive me (and I forgive
> myself) for the way that I had treated him. Our relationship became much
> better after that, and I thank God that we came to that understanding when
> we did, since now he is often very "out of it," and can barely communicate
> verbally.
>
> I think the key to dealing with any family members is communication and
> being perfectly straightforward about the disease. I did have some
> resentment toward my father for being so closed-lipped about the
> experiences he was dealing with. I think he thought he was sparing us, but
> in fact it made the situation worse.  Once we started communicating about
> the disease and about the feelings it was causing, things improved (for
> everyone in the family).
>
> It seems to me that in your case, however, you did all that you could. You
> continually explained what was happening to your daughter, and that you
> understood her feelings. That's about all you can do in that situation.
> Sometimes you just have to let us grow up, and come to the understanding
> that most children (including those without a parent with Parkinson's) do.
>
> I'm glad things have improved with her. Hang in there!
>
> Helene Marcy
>
>
> Helene Marcy
> 803 Califonia, Apt. 4
> Columbus, IN 47201
> (812) 375-2933
> [log in to unmask]
>