5 things I didn’t anticipate about caring for teens with Duchenne MD

Life is lived in seasons, at least here in Nebraska, where we experience all four of them. Some days offer nearly perfect weather: The sun is shining, the temperature is in the mid-70s, and I can smell the thaw of winter and feel the hope of spring.

Then there are the cloudy winter days when the wind howls and blows the leafless branches. On these days, I feel tired and my outlook is gloomy, like the view out the window.

I believe caregiving follows a seasonal pattern, too. I’m in one of the most challenging seasons since my journey as a caregiver started in 2010.

I have three sons with Duchenne muscular dystrophy (DMD): Max, 18, Rowen, 15, and Charlie, 13. Max and Rowen are nonambulatory, and Charlie recently started using a power wheelchair now that he’s slowing down. Parenting teenage boys isn’t for the faint of heart, but adding caregiving to the mix for three of my four sons is more challenging than I ever could’ve imagined. My learning curve has been steep.

Recommended Reading

February 15, 2024 News by Marisa Wexler, MS

Edgewise Therapeutics’ EDG-5506 on FDA fast track for Duchenne MD

As a young mom and caregiver, I read all there was to read about Duchenne. I knew my sons would lose ambulation and would need power chairs and help with activities of daily living. But as a new caregiver, I needed to figure out what that help entailed. Now that I am helping my two oldest sons with toileting, showering, and dressing daily, I understand very well.

I am surprised by some aspects of caregiving for teenage boys that I didn’t know or think about before they happened. I thought I’d share them with you, in hopes that I’m not the only one experiencing these challenges and that my experience may help others.

New ways I’m helping my sons with Duchenne MD

1. At some point, the boys won’t be able to bear weight. My middle son with DMD, Rowen, can still bear a little weight, but it’s getting more difficult. I realize I don’t know how to get him dressed, among other things, if he can’t stand. I follow some Duchenne pages on social media and have seen conversations on the topic. I’m learning, and we are figuring out what works best for us so that when the time comes, we are prepared.

2. When their arms weaken, they will need help brushing their teeth. My sons fight this one, so I don’t do it for them every day yet, but I have to get their toothbrushes ready because squeezing the toothpaste is challenging for them.

3. About a year ago, Max needed to start shaving. I had never shaved a face before I did his for the first time. It is more challenging than it looks. I get shaving cream up his nose and have a hard time with the area above his top lip, even cutting his lip once. It’s awkward to shave someone else.

Thankfully, we finally bought an electric shaver that’s lightweight, which means Max can use it independently with minimal support. We are both much happier with the electric shaver.

4. I pick up all the things they drop. Even when all the boys were ambulatory, they couldn’t bend over and get back up quickly. But now that they are in chairs, they can’t reach the floor. At home, I pick up a lot of remote controls, PlayStation controllers, and phones. At school, the boys have to ask for help. However, that only sometimes works.

Recently, Max fidgeted with his power-chair toggle and dropped it in the elevator. He was the only one in there, and it was the end of the day, so no one was around to pick it up for him. My husband, Jason, had to return to school to get it for him.

5. My day often revolves around my teenage sons’ bladders. I never thought about having to help every time my sons need to pee. Charlie is still independent in the bathroom, but the older two need my help. If I’m not using the bathroom myself or helping our toddler use the bathroom, then I’m in there with Max or Rowen. The nurse helps them at school, and we are currently training a respite provider to help at our house. But I’m always on duty when I’m home, and either my husband or I must go wherever they go outside of school to assist them.

I was not born a caregiver but have learned to do it as a mom to my sons. Duchenne is progressive, so I’ve had to figure out what they need as we progress through the disease. It was once hard to imagine what life would be like as the boys aged. The teenage years of DMD have created a lot of learning opportunities.

Note: Muscular Dystrophy 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 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.