4 Things I Find Overwhelming as a Duchenne MD Caregiver

As a caregiver to my three sons living with Duchenne muscular dystrophy (DMD), I’ve had a few bad days lately. I’ve generally felt worn out and a little sad, and the parties around here have been pity parties.

I try to be positive and remain in a place of thanksgiving and hope. However, I’m not a saint and sometimes want to wallow in my sorrow.

I go about doing what needs to be done, getting the boys where they need to be, and caring for them. I do it often without much thought. But some days, it’s overwhelming.

When advocating for my sons, I often tell people about the fatigue they experience. As a caregiver and parent, I realize I also experience fatigue. I’m tired and could use a couple extra hours of sleep and more help, but I’m also fatigued from all the emotions I experience loving people living with DMD and watching the disease progress.

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Following are four issues that plagued my emotions and caused caregiver fatigue this week.

1. I find it exhausting to explain and reexplain DMD to the people in my sons’ lives, outside of our family and close friends. For instance, this week, I again had to explain that one of my sons has weak hand muscles and that extensive handwriting is impossible for him.

2. Few people outside our DMD community and close family and friends understand the dire nature of the condition. Early on, no one could see the disease, and I had to explain what was happening to my sons.

Now that they’re in wheelchairs, people can see that the boys cannot walk, but sometimes assume that’s the extent of their disability. Many don’t understand that progressive weakness affects every muscle, including the heart and lungs, thus making light of the diagnosis.

3. There are so many places we can’t go and things we can’t do because we live in a world that lacks accessibility, especially for people in wheelchairs.

For example, my 13-year-old son, Rowen, loves the pumpkin patch. We have plans to go this weekend, but I wouldn’t take him if he didn’t love it so much. Unfortunately, all he can do is wheel around the open areas. He can’t go on the slides, go inside the bounce house, or play games.

I’ve read about some pumpkin patches with wheelchair-accessible corn mazes and accessible hayrack rides, but we don’t have those near our home. We get him on the hayrack ride and usually manage to maneuver the corn maze, but it’s so much work. I want it to be easier and possible for the boys to go anywhere.

4. Watching the disease progress in my children and witnessing every new loss are exhausting.

This past weekend, I took Rowen to Sam’s Club. When we were checking out, he wanted to scan our items. My kids love using that scanner gun! When he finished, he tried to put the scanner back in its holster. The holster wasn’t even shoulder-high, but he struggled to lift it enough, and I had to help him. That hurt. Watching progression up close like that gives me a pang of grief in my gut and makes me wish I could stop it.

It happened yesterday, too, while having family photos taken. I get family pictures done yearly to document how the kids change. My oldest son, Max, 16, stood for the photographs a year ago. Yesterday, he needed his chair.

Disease progression is a terrible thing to witness. I want to say that I feel like I’m watching my children slowly deteriorate, but I can’t say “feel” because that’s precisely what’s happening; I’m watching my children deteriorate. I can’t think of many things worse than that.

As I’ve said in many columns before, Duchenne is hard. But thankfully, bad days don’t happen every day. I love my boys more than anything, and I love being their caregiver. It gives my life more meaning than I could ever have imagined. But it’s not easy, and I’m learning to be OK with admitting that, at times, I’m overwhelmed.

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.