In a message dated 97-01-09 19:13:44 EST, you write:
>As a carer, I find dealing with the disease progression is very hard to
>cope with. It is a constant grieving process to me. What about other
>carers?
Joy - Like you, I found dealing with the PD progression a grieving process.
I tried explaining to people who wanted to understand our situation that it
was like a lot of small deaths: with each new symptom that appeared, we
grieved yet again, and went through all or most of the stages Kubler-Ross
describes in On Death and Dying. It seemed to us that Dick's symptoms seemed
to go not in a steady progression, but in stair steps, in that in the early
days, at least, once a symptom manifested itself, seemingly overnight, his
condition seemed to stay the same until suddenly, overnight, maybe a year or
two later, another symptom would materialize.
I have to say that when Dick was first diagnosed, just after his 38th
birthday, I was shocked to discover that my first response was grief for the
loss of my vision of our future together - and had you asked me prior to the
diagnosis, I couldn't even have told you that I had such a vision. And the
grieving process, as I said, goes on from there.
I think that's one thing that PWOP (people without Parkinson's) can
never understand.
Another point I'd like to make, to see if other caregivers have noticed
it, is that until the disease is really advanced, other people don't see the
limitations it imposes, and can't imagine how limited or changed our lives
are because of it. There are so many little, unexpected things that Dick
can't do, or do well (or at a reasonable speed) that PWOP (I made that up, I
think, but I kinda like it) don't see. Anyway, I think that also results in
a feeling of isolation and aloneness with the disease when interactions with
friends and relatives end up resulting in yet another realization that no one
truly understands what it's like living with this disease except other PWP
and their immediate caregivers. Family members who don't live in the home
may think they understand, but they don't.
Thanks for bringing up some points that are important to me, Joy, and I
imagine to others on the list. Margie Swindler [log in to unmask]
