Dear Bob and Joy,
I hope you`ll have many happy years together. To me it`s the message of
today, what a wonderful e-mail, many people outside this list could learn
so much from you
Warm greeting
Sonia


NEVER GIVE UP

----------
> Fra: Bob & Joy Graham <[log in to unmask]>
> Til: Multiple recipients of list PARKINSN <[log in to unmask]>
> Emne: Re: Another slant on Invisibility
> Dato: 11. januar 1998 02:29
>
> Hello Barbara Baichtal
>
> I thought what you said:
>
> >As a caregiver, I have noticed that MY behavior has a lot to do with how
> >directly people deal with Harold.
>
> made a great deal of sense and showed a lot of sensitivity.  I have been
> wanting to write to the list about another aspect of "invisibility" which
> happens to many carers, and that is when a friend will go over the top
> (almost) in asking about the PWP - either directly or indirectly and
NEVER
> ask "And how are YOU doing...Joy?"  But it sounds sort of selfish to say
> that because at least we DO get noticed, most of the time.  This is a
much
> deeper sort of invisibility I am talking about.
>
> I have a few good friends whose partners have PD who always make a point
of
> saying "And how are YOU Joy?" (I must add there is a tacit understanding
> between carers which makes such questions almost unnecessary.)
>
> Nevertheless, such attention can often bring tears to my eyes.
>
> Do you know what I mean?
>
> My husband is badly affected by speech problems - out of proportion to
the
> rest of his problems.  He walks and moves quite well and never shuffles,
so
> he is not immediately obviously "disabled."  In restaurants I have found
> that if he is not understood, I am immediately questioned --usually by
eye
> contact - to explain on his behalf.  We have a sort of unwritten
agreement
> that if the person is not in a tremendous hurry or is the sort who is
happy
> to wait until Bob tries again, I hang back with my mouth shut.
>
> It is rather tricky sometimes to know just when to speak on behalf of
Bob.
> I am sure there are times when I rush in too quickly - but I do this
often
> to stop someone "turning off" completely. This relaxes everyone all
around
> so that Bob can begin to talk more freely - and hence begin to be able to
> join in the conversation. Meetings are a problem - often there is just
not
> the time for repetition.
>
> We also have a problem in coversing with his mother who is 82 and quite
> deaf.  She cannot understand him on the phone at all.  So it seems that I
> do all the talking (shouting!) all the time and certainly any sustained
> conversation falls to me.  I find this not only draining but it is sad
too,
> because I feel that Bob is not "communicating" deeply or meaningfully
with
> his mother at all. And I am not sure if she realises why I am doing all
the
> talking.  She and probably other relatives as well -- hey even our
friends
> -- think that I am a dominating, overbearing, pushy wife and carer.  All
I
> am trying to do is maintain relationships for two people instead of
one....
>
> I ask him if I do the right thing and he tells me I do.  I have asked him
> to give me a little nudge when he needs help, but so far we have not had
to
> do this.  Of course if I am physically separated - in another part of the
> room for instance, he has to manage by himself and usually does.... Maybe
> it's I who am the problem!
>
> As I have been writing Bob has come to stand behind the chair and has
> quietly put his hands on my shoulders.  I am grateful that he at least
> understands how it is for me.
>
> Joy Graham (CG Bob, 58, 8+ yrs)