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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)