Navigating the Past Year Without Caregivers Has Been Challenging

I’ll never forget March of last year when the pandemic began. Many of us didn’t realize how serious it was, and we didn’t know what to expect, how to handle it, or what we were in for in the months ahead.

My family and I watched the news closely, read the research, and kept in contact with my doctors to stay well informed and follow COVID-19’s trajectory closely. Eventually, when circumstances began to escalate, we made the difficult decision to temporarily put a pause on my caregiving services to completely quarantine and stay as healthy as possible.

I was crushed. I remember breaking the news to my caregiver, who was so understanding of our decision. As soon as she left, I broke down crying.

I have always considered myself fortunate to live with my parents and have them to lean on for my caregiving needs. Not all disabled people have that luxury. Even so, my caregivers are an extension of me. They’re my arms and legs. They allow me to cultivate a sense of independence in my life despite being dependent on others for my physical needs. Losing them last year felt like I was losing an extension of myself.

As I cried, my mom assured me it was going to be OK. After all, we knew how serious an illness like COVID-19 would be for someone with SMA, so this was for the best. Plus, it was temporary. We’d likely bring everyone back within a few weeks when the virus spread slowed down.

Yes, a few weeks.

Needless to say, a few weeks turned into a few months, which has now turned into over a year. Along with an unpredictable pandemic, going without caregivers for this long wasn’t something we expected.

I have always remained steadfast in my gratitude for the help I have received in my lifetime, but losing my caregiving services made me reconsider how much of an impact these people have had on my family’s lives.

For starters, watching my parents take on my care without any reprieve has been challenging at times. They are exhausted, with good reason. While caregivers are ultimately staffed to help me with my needs, they also indirectly allow my parents to go about their days and tend to their needs. They allow my parents to rest and recharge.

Not having an extra set of hands for the past year has worn everyone down. I see the physical toll it has taken on my aging parents. In turn, I can’t help but feel guilty out of love. At times, the physical toll my care takes on them manifests as an emotional toll on me.

I wish I could pinpoint where this guilt comes from and squash it once and for all. My parents have never treated me like a chore or a burden. The sacrifices they have made in the last year have all been done out of love, and they remind me of this frequently. Nevertheless, life without caregivers has been more emotionally taxing than I ever thought it would be.

Alas, we have never regretted our decision to temporarily suspend caregiving services despite how sick of each other we may feel sometimes. (The only time I have spent away from my parents is when I’ve gone into the operating room for my Spinraza injections. It’s like a vacation!)

Today, we are slowly introducing caregivers into our world again as we feel a little safer knowing that our circle is fully vaccinated. While the last 15 months have tested us more than we could have imagined, the love my family and I have for one another runs deep. And it is love that propels us forward.

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