I’m a grandmother embarking on my third career – becoming a professional caregiver. Before I decided to try my hand at caregiving, I taught English overseas and helped Native American adult students prepare for their high school equivalency exams. After that, I drove big rigs cross-country for a number of years. I like stepping into a completely different occupational world every few years. It keeps me on my toes.
My very first regular client, whom I’ll call Ralph (though that’s not his real name), is a talented teacher, juggler and cyclist who is now confined to a wheelchair at age 82 with Parkinson’s Disease. Before I met Ralph, my knowledge of Parkinson’s was minimal. For me, as for many Arizonans, it was “the thing that Mo Udall had.” Spending several days every week helping Ralph with his daily activities has taught me a lot.
I often think of one of my favorite poems by English writer Thomas Hardy, author of Tess of the D’Urbervilles, which conveys the vital force within each of us that refuses to surrender to the physical disability that inevitably comes with age or disease.
We all have donned disguises for a few hours, for fun. At a party, we can take on the identity of a devil, an angel or a giant squid, then lightly cast it off again. Parkinson’s is a disguise that a person does not choose and cannot cast off. It hides a graceful, capable person behind a mask of tremors, painfully slow movement and halting speech.
The first time I met Ralph, it was immediately obvious to me that he wanted to be recognized for who he is behind the mask of his disability.
Along with his two other new caregivers, I was ushered into the small apartment where Ralph sat in the reclining chair where he spends much of his time. The chair faces a large screen T.V. set and a window with a lovely view of the desert landscape. The first thing Ralph did was open up a scrapbook he was holding. We leafed through maps of parts of Canada, of Civil War battle sites in the Southern United States. It turned out he’d not merely visited these places on vacations; he had pedaled through them perched on the seat of a bicycle.
That one scrapbook was just the tip of the iceberg. Each day — sandwiched in between the mundane routine of meals, meds, and personal hygiene — there are new revelations about Ralph’s amazing talents and experiences. He’s fond of thrusting sheets of paper into my hands with a twinkle in his eye and the gruff command “Read that!”.
Once it was a long list of very exotic faraway countries. Yup, he’d cycled through all of them, thousands of miles. He asked for help organizing five or six white banker’s boxes of tattered manila folders. I couldn’t believe the scope of the man’s interests. One folder’s tab said “Diving.” Had he done it himself? Of course. A handful of black and white snapshots showed a young Ralph poised in perfect form above a diving board. What about scuba diving? Yeah, that too. He’s also been a baseball player and a master juggler who has attended juggling conferences all over the world. He taught middle school social studies for many years.
And then out of the blue, Ralph will ask, “What day is it? Did we already go down to lunch?”. Short-term memory loss is an effect of Parkinson’s. I am struck by the grand irony of this question, coming from someone like Ralph.
As a caregiver, I often wonder how I would react if I had led an extraordinary life of high adventure and achievement like Ralph, and then found myself needing support with daily tasks of living. Would I be able to explain patiently to a stranger, as Ralph has done for me, how I wanted my teeth brushed, how I wanted to be assisted with ambulation so I’d feel unafraid of falling, which objects I needed near me and how to place them so I could pick them up easily?
Ralph — who speaks lucidly, though softly and with great effort — is a great teacher.
Like all great teachers, his first concern is always for others. He hates to bother people and is never rude. Ralph tires easily and is often overtaken by the shaking that comes with Parkinson’s. He once told me that he probably wouldn’t sit at the dinner table so long, but he makes the effort so that his tablemate, Ernie, will have somebody to talk to. I don’t know too many younger, more able-bodied people who would be willing to make that kind of effort for the sake of another person’s comfort.
The poet Gil Scott-Heron, who died this month at the young age of 62, said that here on earth “we’re just going to meet other humans and help to make each other better.” Ralph, while living with Parkinson’s Disease, is also living those words.
Kim Mathews grew up in Michigan but has been a resident of Tucson, Arizona for most of the past 33 years. Her recent professional life includes teaching GED classes for the Tohono O’odham Nation west of Tucson for 11 years and long-haul truck driving for nine years. She is eagerly exploring the mysterious universe of caregiving. She shares her life with her two daughters, grandaughter, 91-year-old mother, cat, dog, three horses and many friends. She has been writing all her life.
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