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Dear Margie: As both a PWP and a CG for many years for a
husband with a chronic illness, I think you've made your
point beautifully...  Carole

--- Dick Swindler <[log in to unmask]> wrote:
> Jim -
>
> I don't think the oldtimers have forgotten what it's like
> to be scared, etc.
> I have a theory about the frequent quarrels that erupt.
> My theory is that PD
> is so darned difficult to deal with that both PWP and
> caregivers are
> frustrated and angry pretty darned often.  Mr. Parkinson
> has taken up
> residence in my home, uninvited, and made my life and my
> husband's much more
> difficult than it has to be, and taken a toll on our
> patience, our family
> life, our pocketbook, etc.
>
>  There are days that I use every ounce of my patience, as
> caregiver, not to
> scream at the sheer difficulty of living with a PWP.  No
> doubt Dick is
> equally frustrated at being the PWP, with all the
> difficulties this entails.
> If this were a temporary condition and I knew there'd be
> improvement within a
> week or a month, I could grit my teeth and get through
> it.  But knowing that
> today is as good as it gets makes it a lot more difficult
> - at least on my
> not-so-good days.
>
>  There are times I can sit back and think about how
> fortunate we are to live
> in this country, where the medical help is so much better
> than if we lived
> many other places.  And to live comfortably, with all the
> modern
> conveniences.  I can also appreciate the fact that Dick
> is doing
> exceptionally well for someone who has had PD for 18
> years.  I do admire his
> determination to hang in there and not let PD stop him,
> no matter how
> difficult some things are for him.  Nevertheless, I'm
> having to do things, or
> learn to do things, that I wouldn't have expected to do
> in the normal course
> of events.  I'm all too human, and there are times that
> I'm simply seeing the
> half-empty glass, and feel the anger and frustration of
> dealing with the
> day-to-day losses and difficulties PD has brought into
> our lives.  Dick faces
> having to give up control or responsibility for things he
> always expected to
> take care of, and I'm having to do, or learn to do, those
> things in his
> place, on top of the things I've always taken care of, at
> a time in my life
> when I'm older and have less energy and stamina.
>
> It's at those "half-empty" times that something someone
> says or writes is
> likely to hit me wrong, and, being unable to strike out
> at the uninvited and
> unwelcome Mr. Parkinson, I find myself taking my anger
> and frustration out on
> the hapless person who happened to cross my path at the
> wrong time.
>
> This has been pretty long, and I don't know if I've
> managed to make my point
> after all this.  I just think that we're all operating at
> such a high level
> of stress and difficulty at all times that we don't have
> the tolerance for
> each other that we'd have had in other circumstances.  I
> suspect we're all
> nice people underneath it all - or used to be, pre-PD.
> Hang in there and
> don't let the quarrels get in the way of the very real
> help and support this
> list brings.
>
> Margie Swindler
>

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