Celebrating the family and friends who serve as unpaid caregivers

My first caregivers were my parents. This is true for the vast majority of us. If everyone is fortunate to live long enough, the roles often flip, with grown children caring for their aging parents. But when you factor in muscular dystrophy, this model no longer holds.

Growing up, my mother assumed the brunt of my needs, including medical care and help with activities of daily living. In high school, my parents assisted me with passive leg stretches three times a day and modified our home with portable ramps. I was still able to walk during my teenage years, but this helped me enter and exit the house.

Around the time I graduated from high school, my father explained that he and my mother wouldn’t always be able to function as my main caregivers. At that time, aside from holding someone’s arm while walking on unsteady ground, I didn’t require any assistance. So I did what most 18-year-olds would have done and didn’t give it much thought.

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When I entered college, my closest friends became my caregivers, helping with tasks like carrying my books across campus. I connected with the campus disability office when I learned I was assigned to a class on the fourth floor of a building without an elevator. I was still walking, but the stairs were difficult. State law required the class to be relocated to the first floor.

I began to see a relationship between self-advocacy and caregiving. As long as I asked without demanding, the vast majority of people were more than willing to help me out.

Advocating for my needs

During my third year of college, my father passed away from lung cancer. Though my world was shattered, I realized that all the time we spent talking about my life with muscular dystrophy was his way of preparing me to advocate for myself and my caregiving needs.

I chose to move to an off-campus apartment for my senior year of college. I spoke with several of my closest friends and let them know that living with me would come with asks: help with laundry, grocery shopping, carrying anything heavier than a few pounds, and adjustments to our cabinet storage. (I could no longer reach items high above my head.) One of my closest friends at the time told me that all of my asks were no problem. Independent living with a caregiver who wasn’t a family member was a go!

I didn’t realize it at the time, but I was interviewing my first personal care assistant (PCA). He and I rented a first-floor apartment with two bedrooms and enough space for both of us. I spoke with the building manager about adding an additional handicap parking space near our entry door, and they kindly took care of it.

Before we moved in together, my friend and I had several long conversations about his level of comfort with essentially becoming an unpaid PCA. This was in the mid-1990s, and I had no idea that professional care agencies were an option. I simply hadn’t been informed at my clinic appointments, and not everyone had internet access yet. This was also before the Affordable Care Act, which allows young adults to remain on a parent’s healthcare plan until age 26. However, even if I had been aware of professional agencies, I wouldn’t have had the money to pay for them.

My buddy and I lived in our apartment for a year. As promised, he did the laundry, took out the trash, and cleaned the bathroom. We split up other cooking and cleaning tasks based on what I was able to do, which included doing the dishes, vacuuming, and folding my own clothes. We both also had girlfriends at the time who helped with grocery shopping and errands.

For the most part, my roommate and I had a great time and a clear understanding of each other and our expectations. It was a time of growth for me as I navigated the process of asking people outside my family for help.

This National Family Caregivers Month, let’s remember that many people take on this role, which is often full-time, without being paid. My roommate’s name was Carl, and this column is for him. Thank you, Carl, for all you did to help me gain confidence in advocating for myself.

Let your caregivers know that they hold a special place in your heart.

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.