Perhaps I’m too thin-skinned, but I bristle when I hear those nine letter C words - caregiver or caretaker. I picture a bedridden patient, unable to do any of what the neurologists call “activities of daily living” without assistance. I visualize a helpless victim, unable to contribute to family or society, while the saintly spouse caregives and the patient takes.
It makes me feel like shouting “we’re still here” as many of the six million people worldwide living with Parkinson’s Disease (PD), who are doing our bests to seek meaningful activities to fill our days and contribute to society.
Those of us living with PD are unaccustomed to being idle, as we go about our business, struggling to pass for normal. While we may be impaired, we are not helpless or demented. We are single, married, have multiple roles as husbands and wives, parents, brothers and sisters, sons and daughters, friends and neighbors.
We are the movers and shakers of the past who because of PD, have physically become the movers and shakers of the present. Most of us are well educated. We are volunteers, writers and political activists. You may find us in your yoga class or walking our dogs in your neighborhoods.
When describing these relationships, I prefer the term “support of spouses," “family care” or “kindness of outsiders” than the words “caregivers” or “caretakers.” Perhaps it’s an illusion, but I believe that in our relationships with others, we both give and take – that it’s reciprocal.
So until I’m on death’s doorstep and require full-time paid care, I will ban those two C words from my vocabulary.