Reversing the Caregiving Roles in Our Household

“Pack my suitcase?”

That famous quote from “Home Alone” coincides with a shellshocked expression on Kevin’s face. For a character who has no concept of independence at the start of the movie, packing his own luggage for a family vacation seems like a gargantuan task. 

There was a time when I felt something similar to Kevin’s panic whenever I had to take responsibility. Growing up with SMA, I became accustomed to constantly relying on other people for my needs. Anytime I needed something, my parents were my strongest advocates. My mom, Cindy, in particular has always possessed a superhuman ability to deal with insurance providers, doctors, school officials, and those irritating folks who take up accessible spaces in parking lots. 

Mom and Dad still do a lot for me, but they’ve also prepared me for adulthood and a more independent lifestyle. While I still live at home, I am a working adult with multiple responsibilities. I manage my care, work full time, help my parents financially, and pay for my own comic books! If I didn’t do that last one, my parents would be broke.

Yet, even with the independence I have today, I still rely on my mom for assistance during the weekdays. I need help getting set up for meals, repositioning my hands and feet, and sometimes transferring out of my chair for an afternoon nap. My mom and I are well aware of each other’s needs, and we have a routine that works. 

That said, it’s a major adjustment for both of us when we have to tamper with that routine.

Last month, my mom had knee replacement surgery. She’s had bad knees for a while, so much so that she had to lean on my chair for support when we were at Disneyland last year. I remember thinking, “Well, this is a sight. I’m the disabled son, and I’m the one you’re leaning on.”

Since I have metal rods fused into my spine, I’ve been referring to our new metal band as Iron Man and the Bionic Woman. Now we just need an excuse for my dad to have some sort of prosthetic body part, and we could all be extras in a future “Mad Max” movie.

The fact that my mom is now using some of my medical equipment is enough to feed my warped sense of humor. We also had physical therapy appointments at the same time the other day.

It’s a perfect sitcom scenario, but it’s been a challenging process for both of us. While Mom has been in recovery mode, I’ve had to ensure that I have enough assistance during the day.

Kevin and his mom, Cindy, at Disneyland in 2019. (Courtesy of Kevin Schaefer)

Thankfully, I already work remotely, and I don’t exactly have many places to go right now. I’m also fortunate to have other family members close by who have helped out during this time. My sister-in-law drives me to aquatic therapy, and my cousin has been coming over to help me on walks around the neighborhood. Having my siblings and grandparents living close by is a lifesaver, especially at a time like this. 

Still, adapting to this situation is no easy feat. Whereas my mom is usually the one taking care of me, I’ve been helping her out lately. Reversing our roles has forced me to be more flexible, resourceful, and patient than ever before. It’s a good thing I was trained by the best. 

In light of these circumstances, I’ve been more drained and stressed lately. It’s 2020. Who in the world feels an abundance of energy and motivation right now? Seriously, I want to know if this person exists.

Like anything else in the world of SMA, reversing the caregiver role with my mom is a roller coaster of thoughts and emotions. With everything we’ve tackled together, this is just another adventure.

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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.