Print

Print


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