My Care Network Is Vast, and That’s the Way I Like It

They say it takes a village to raise a child. If that’s true, then it takes an army to care for someone who has SMA. Though most of us tend to have one or two primary caregivers, the reality is that we depend on countless people every day to meet our physical needs.

My care network is vast, so much so that I’ve lost track of how many people have wiped my butt in the past few years. While my dude Randy (who’s been with me for almost five years) and my parents are my primary caregivers, I also have other certified nursing assistants (CNAs) come on Saturday mornings, friends and family members who help me out, strangers who open doors for me, and an all-star team of physical therapists. I recognize that I have extremely limited use of my arms, legs, and pretty much all other muscles in my body. As such, I can’t afford to depend on just a small group of people.

In January, I started with a new caregiving agency so that I could have Saturday mornings covered. I documented in a previous column how difficult it can be to find a good agency. However, the challenges don’t end there.

Since starting with this agency, I’ve had six different CNAs work with me. Some have helped me multiple times, while others have worked only one day when no one else was available. Each time someone new comes, I have to guide them through the meticulous process of transferring me, bathing me, dressing me, and situating me in my wheelchair so that I’m ready for the day.

At the same time, I try to make small talk with the person working with me. No matter how many times I’ve done this song and dance, it’s always awkward trying to converse with a caregiver I’ve just met while simultaneously trusting them to transfer me safely and handle my routine.

It goes something like this: “So, you’re from Memphis. That’s cool. I have a co-worker who lives th– … Hold up, my leg doesn’t stretch any further! Just watch my foot!”

Caregiver training is one of the more challenging and comical things about living with SMA, and it hasn’t gotten any easier for me. Regardless, I’ll take it over having to rely on my parents for everything any day. Working with multiple caregivers is challenging, exhausting, and well outside the realm of my comfort zone. It’s easy to rely on the same people, but that means putting a lot of pressure on them.

I’m grateful to have a vast care network that goes beyond a small circle of friends and family. I have caregivers with different backgrounds, personalities, interests, and experiences. While it’s often uncomfortable to rely on so many people, there’s a certain beauty to it as well. The sheer number of caregivers, friends, family members, and strangers who help me out regularly inevitably leads me to have deeper connections with people. Plus, it’s fun to see a new caregiver react to my JACO robotic arm.

I’ve had a lot of people in my care network wipe my butt, put on my catheter, and slide me across my room with my electric ceiling lift, and that’s the way I like it.

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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 Services, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.