What I’ve Learned From Finding a Caregiver

As my Duchenne muscular dystrophy has progressed, it’s become untenable for me to live on my own without outside help.

We’ve begun seeking professional caregiving assistance while my parents are away on vacation or work trips. It’s nothing major — mainly help with cooking, cleaning, getting into and out of the shower, picking things off the ground, standing, stretching, and being there in case I fall and hurt myself.

The process of seeking an aide has been a learning experience on how to navigate the social services landscape, communicate my needs clearly and concisely, and humble myself enough to ask for things that I could do but shouldn’t to conserve energy.

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I’ve gone through the finding-an-aide process before — albeit in a slightly different way — starting in college at the University of Southern California. I created a sign-up sheet for physical therapy students to help me stretch for 30 minutes on the days I didn’t go to the student health center. I did the same with my roommates and housemates for assistance with chores like grocery shopping, cleaning, laundry, and a few other minor items.

Things changed slightly when I interned at The Washington Post in Washington, D.C. When the other intern who was living with me (and offering some assistance) moved out and my job was extended, I had to find someone nearby to help.

I quickly discovered Care.com, which is mainly used to find assistance for babysitting and caring for the elderly, but has been helpful in this transitional period of my life in which I can still do plenty of physical tasks but need help with straining activities.

With Care.com, I found an incredible aide in Washington, D.C. who helped my parents and me breathe a bit easier. Since we were paying them, I felt more comfortable asking them to do very personal things, such as helping me into and out of the shower and applying a topical cream to treat my athlete’s foot.

Back at home in Newport Beach, California, I’ve used Care.com to find another aide closer to my age who can help with whatever I need when my parents are away. In some cases, they’re able to predict what I might need assistance with without me ever asking.

I’m paying for my care out of pocket, but am in the process of applying for In-Home Supportive Services, which will provide financial support to bring on an aide full time. It’s been a long process, and I’m still not there yet, but it’s been good practice communicating what I need in a digestible way.

As anyone with Duchenne can attest, it can sometimes be hard to explain what your needs are. Just because I can do one physical activity doesn’t mean I can do another. I can walk short distances, but I can’t lift anything or stand for longer than five minutes.

I’ve had to get better at explaining why that’s the case and being firm with what I need. Now that I’m working with people who aren’t my parents, I have to make my requests clear. My parents have been with me for 24 years and often know what I’m thinking before I ask.

Now, I must be vocal about what I need and make my schedule weeks ahead of time. I feel like a producer in a big Hollywood film sometimes, wrangling actors, scouting locations, and ensuring everyone knows what they’re doing and when.

I’ve known I would need additional care for a long time. But now it’s a matter of making that a reality by learning how to manage other people, clearly explaining my needs, and organizing it all in my head.

With Duchenne, staying on top of my health is like having a second full-time job. It’s difficult to balance it all, but it’s helping me become a more successful, organized person at the same time.

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Note: Muscular Dystrophy News 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 another 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 Muscular Dystrophy News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.