FROM THE EDITOR'S PEN
/ Why We Do What We Do
I was doing some late spring cleaning of my
computer last weekend (giving the delete key quite a
good workout) and came upon a picture of my dad I
havenít seen in many years. It was one of him at the
beach, smiling and playing in the surf, looking
young, healthy and happy with no idea of what the
future had in store. And a funny thing happened.
Instead of being sad, I felt incredibly motivated.
Looking at him reminded me of why we do what we do
around here. It also brought to mind the times in
the last year of his life when he was desperately
fighting to maintain his dignity and sense of
control over his illness.
Dad was living with bone marrow cancer. In fact,
the phone call that the doctor made letting him know
about those devastating test results happened
exactly 23 years ago this week. In rapid pace
thereafter, much of Dadís ability to control his own
life began to drift away, replaced with extreme pain
and loss of function. My mom became an expert at
finding ways to allow him to feel in control even
when his choices were limited.
The worst point of contention between them was
over food. Maintaining proper nutrition was vital to
his survival, but everything he needed to eat made
him nauseous. I remember my parents working together
in their kitchen trying to create food combinations
that he should eat and, more importantly, could eat.
I soon realized then that although his choices were
actually quite limited, the feeling he had of
control over at least a portion of his own care was
extraordinarily importantóto both of them.
I remember, not so many years after Dadís
passing, how constructing a world in which my
grandfather felt some imitation of control while
living with Alzheimerís disease was crucial to his
own well-being. We all called adult day care his
work and the assisted living facility became his new
apartment. When he would become agitated over the
daily business receipts for his non-existent
business, we would show him his bank receipt (torn
up newspapers), and he was content.
I have heard so many stories like these over
these past 19 years that I realize a major part of
caring for a loved one is finding a way to allow
them to help care for themselves, even if they
cannot really do so. And maybe that is really why we
do what we do as family caregivers.
Have a happy, loving and safe holiday.