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 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.


Gary Barg

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