Why having a familial relationship with my caregivers matters to me
My 7-year-old niece, Lily, has an unparalleled level of curiosity. She asks questions about the world, when we’re going to Disneyland next, and whether I’ve seen every episode of “Full House.” The answer to the latter is yes.
Lily also inquires about my life with SMA, and specifically, my caregivers. Every time she comes over she wants to know which of my personal care assistants (PCAs) is scheduled to come that night. I have a team of five people, including my parents, who handle the intricacies of my care routine. Lily and my two nephews have grown up seeing multiple people get me in and out of bed and dress me, and they understand this is a natural part of my existence. Their exposure also lets them see the rapport I have with my caregivers.
Since I switched to a consumer-directed program three years ago, I have had full autonomy over who I hire to care for me. Rather than relying on agencies to send me their employees, I find people myself. Though it’s more work on my end, it allows me not only to find people who are capable of doing the job, but also ones I am compatible with.
Caregiving is an intimate profession, which is why when I’m searching and conducting interviews, I look for people I feel comfortable around. To do this, I inject my personality into my job description.
Before I list my specific physical needs, I start an ad with this introduction:
“My name is Kevin Schaefer (he/him). I am a physically disabled, 30-year-old man in Cary, North Carolina, looking for one or more personal care assistants. I have a neuromuscular condition called spinal muscular atrophy (SMA) type 2, and my disability affects my voluntary muscles. In addition to being a lifelong wheelchair user, I also have limited arm and upper body strength and require assistance with most physical tasks.
My cognitive abilities are unaffected and I am a strong communicator. I work remotely and live with my parents. Our house is well set up to accommodate my needs. I’m looking for good, reliable people. Certified nursing assistant experience is helpful, but not required. It’s a bonus if the person applying has an affinity for irreverent humor, ‘The Office,’ ‘Star Wars,’ Taylor Swift, and books, and can quote ‘Hamilton’ religiously.”
From left, Christian Spicer and Kevin Schaefer meet voice actor Dante Basco at GalaxyCon Raleigh in North Carolina in late July. (Courtesy of Kevin Schaefer)
Through this summary of my personality and interests, I got one caregiver who’s a “Star Wars” enthusiast, and another who regularly sees shows on Broadway. I’ve formed tight bonds with these people, and I’ve met their friends and significant others.
The only downside to having caregivers with whom I develop a familial relationship is that the job itself isn’t permanent. Career PCAs are extremely rare, which is understandable due to the limited pay and lack of benefits. Most of my caregivers for the past few years have been nursing students, which is great for them while they’re in school.
Recently, my caregiver Christian and I went to GalaxyCon Raleigh, a geek convention I attend annually. The venture was sort of a last hoorah for us, as Christian started medical school this month and will be on that journey for several years. Though he’s still local and we’ll remain close friends, having him move on is a transition for both of us after almost three years together.
While I wish I could hold on to the great caregivers for a lifetime, I don’t regret forming bonds with them. I would rather have this kind of connection than have a longtime caregiver who’s qualified but has nothing in common with me. It’s why I’m opposed to artificially intelligent PCAs.
Caregiving is one of the many roller coaster elements of living with SMA. Finding the right people can be taxing and emotionally draining, but when it happens, it’s well worth the struggle.
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.
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