I’ve been putting this column off for a while. While I’m perfectly fine with sharing some things, I generally don’t like to talk about the people in my life. But this is something most, if not all, SMA patients deal with at some point, and I want to be honest about it. At the very least, maybe it’ll help someone else feel less alone in their struggles.
My dad was my primary caregiver for 18 years. When we hired my first personal care assistant (PCA) to take me to class every day, it took me a while to adjust. When we hired our first full-time PCA to get me up and ready in the morning, take me to appointments, and help with everything except putting me into bed each night, I had an even harder time that was worsened by the years-long depressive episode I experienced at the time. But I eventually learned to adapt, and I’ve enjoyed my time with my PCAs ever since.
Lately, though, we’ve been having trouble. My first full-time PCA left after a year and a half. Since then, we’ve struggled to keep people, let alone find them. One PCA was with us only briefly and had difficulty keeping scheduled hours. For other PCAs, I’ve had to closely track their hours to ensure appropriate pay.
I don’t want to make it seem as if we’re perfect employers, because I’m sure we’re not. When it comes down to it, we’re still learning, and whenever we hire someone new, we really emphasize honesty and communication. We’re continually refining the process of inviting PCAs into our home and encouraging them to let us know what works and what doesn’t. So when problems arise, I find myself doubting … well, everything.
It takes an emotional toll on me as well. I connect with my PCAs on a deep level. They don’t just take care of me — they see me at my most vulnerable (they literally see me naked), and having them there is the only way I can live my life with semi-independence. Remaining open to connection, despite experiencing a significant amount of stress and anxiety because of my dependence on my PCAs, is exhausting.
My body is affected, too. I’m tired all the time. I dread waking up each morning because I know the new day will bring some sort of turmoil — an anxiety attack that ends with me crying so hard I can’t catch my breath, for instance.
I write all this because I want to hear from people in the community. Do you hire PCAs, and if so, what works? What doesn’t? Let me know in the comments below, and as always, thanks for reading!
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.