Why I approach caregiving as a 2-way street of mutual support

On the last day of the annual Cure SMA conference, the closing session is always a panel called “It’s a Wonderful Life.” It features a group of adults with SMA talking about their daily lives and answering audience questions. Its core theme is that there are plenty of people in the community who have fulfilling lives and aren’t subjected to the doom-and-gloom disability stereotypes. The only thing missing is a Jimmy Stewart impersonator.

I’ve been on this panel multiple times, and I enjoy the blend of humor and seriousness that stems from the audience interaction. Topics range from independent living to college to dating and relationships. This year, a mother and father asked about the nuances of hiring caregivers and preparing their daughter for life after high school. As tears streamed down the mother’s face, all of us on stage recognized the additional difficulties that every parent in the SMA community faces when letting go of their children.

I addressed this couple by talking about the worst advice I’ve ever received on caregiving. When I first started looking for personal care assistants in college, an employee from the agency told me not to develop friendships with anyone I hired. Their philosophy was to keep things strictly professional.

My philosophy is that if I hire someone to wipe my butt and clean my catheter, I’d rather not talk to them like they’re mere acquaintances. Caregiving is an intimate vocation, which is why it’s so hard for parents and people with SMA to invite strangers into that space.

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Despite the initial anxieties, I like forming connections with the people who dress and bathe me. Longtime readers of my column know the stories of Randy, my former caregiver of seven years, and our idiosyncratic adventures. Additionally, I’ve had many others who have impacted me beyond fulfilling their basic job requirements.

I’ve had caregivers who are originally from Nigeria, Mexico, and across the United States. Some came to me with extensive medical backgrounds, while others were novices in the realm of personal care.

Those who no longer work with me now work in various fields. Randy became a commercial truck driver, while another from my college days left to serve four years in the military. In each of these cases, I’ve enjoyed learning their stories, as well as spending time together.

Additionally, building relationships with caregivers allows me to support them. Caregiving is a two-way street, and I have ways of providing care for the people who help me. I may not have the physical strength to wipe their butts in return, but I can give emotional support. Caregivers aren’t robots, and I can’t expect them to want to work with me if I treat them as such.

Anytime I hire a new assistant, I emphasize that the job comes with flexibility. My caregivers are welcome to bring homework during shifts, adjust their schedules as needed, and take nights off. There are still expectations, communication being my top priority. Still, the last thing I want is for caregivers to feel an exorbitant amount of pressure when they’re with me.

As I looked at that couple in the audience, I saw the blend of anxiety and hope in their eyes. As much as they dreaded other people taking care of their daughter, they saw my friends and me on stage. They knew then that it was possible for their daughter to thrive independently. Maybe they’ll even see her build the kind of relationships that I have.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.