I’m just back from taking my wife Susie to the airport. She’s off to celebrate our grandson’s birthday. Except for the special emptiness that always seems to settle over the house when she’s out of town, I’m fine with being home alone for the weekend.
This way Susie gets some quality kid time and a break from the daily routine of living with a quadriplegic. And I get to catch up on my writing. Later, a personal care attendant we both trust will show up to help me with my evening and morning needs.
Helpmates, Not Caregiver
Most days Susie’s the one who does those things for me. You might call her my primary caregiver but she’s much more than that to me—just as I’m much more than a care recipient to her. I prefer to think of ourselves as each other’s helpmates.
For me, the term caregiver implies a one-sided relationship, one where the helper is totally responsible for the health and welfare of another individual. Our relationship is nowhere near that lopsided.
We both work outside the home. We co-parent and co-grandparent. We share decision-making. And while we confer with each other over problems and health matters, in the end we’re each responsible for ensuring our own well being.
It’s that responsibility, I think, that’s the most crushing burden of being a caregiver. I watched Susie coping with it during the last years of her parents’ lives. While she had paid help to take care of their physical needs, watching their decline and making every decision for them weighed terribly on her.
In that case she truly was a caregiver. And the care and concern she lavished on them most certainly was a gift prompted by her love for them. Of course Susie loves and cares for me too, as I do her. But while I’m pretty independent, there’s still no escaping the constant oppression of disability. I’m sure she sometimes feels burdened by those tasks that my biology dictates must be taken care of on a regular basis.
It’s that burden that concerned me most when we were married. I had a paid personal care attendant at the time and turned down Susie’s suggestion that she take over his duties. I’d been married at the time of my accident. While there were many reasons that relationship self destructed, the burden of my quadriplegia and helping me certainly hadn’t helped.
But still, when my aide became unreliable a few years later and had to be dismissed, Susie and I agreed not to replace him. Coping with that wasn’t always a smooth process for either of us, but we both found patience and a new way to interact.
We’re married more than 20 years now, and I like that I still miss her when she’s gone on weekends like this. It’s not the things she does for me that I miss but rather her presence in my life. And in marriage, I think, that’s just the way it’s supposed to be.
A C-6 quadriplegic, Alan Troop is the author of The Dragon DelaSangre dark fantasy series of books as well as numerous articles, poems and essays. He lives in South Florida with his wife Susie and their very neurotic cat, Chong.
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