My lesson about what not to do when you’re a DMD caregiver

Tuesdays are my writing days. My column publishes on Fridays, and the draft is due early Wednesday morning, so I write on Tuesdays. I should be a column or two ahead, but I’m a busy mom, and it never works out.

My husband of 25 years, Jason, and I share seven children: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. Max, Rowen, and Charlie all have Duchenne muscular dystrophy (DMD).

This week’s column was almost not written. I woke up with a headache Tuesday because, for whatever reason, my pillow made my neck hurt. It was bad enough that staring at the computer screen made the letters look blurry, and my head hurt even worse.

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I told myself I would take it easy and write if I felt better in the evening. If I felt bad, I would not. I rested on the couch with my eyes closed, took medicine for my headache, and felt OK as long as I didn’t move.

But I had to take Max to physical therapy, pick the kids up from school, and make supper. My whole body hurt and I felt awful. However, the money I earn writing this column goes into our Christmas account, and with the holiday just around the corner, I did not want to miss a week. If you know me, you know I am crazy for Christmas, so that was all the motivation I needed.

It took all of Tuesday to write the column, however, and I needed to take breaks to rest my eyes. And when my back started to spasm, I had to stop to use a heating pad on my neck and upper back. During those breaks, I had time to think about how my body got to this point.

How I got to this point

Over the past several weeks, I haven’t taken care of myself at all. In fact, this week’s entry is basically a lesson in what not to do as a caregiver.

My family recently moved into a new house. Over the past three months, I’ve been focused on packing, moving, modifying the new house, repairing the old house, and settling in. I pushed myself hard to make the entire process smooth so my sons with Duchenne would not miss out on the level of care they are used to. Somewhere in the process, however, I forgot to take care of myself.

First, I stopped taking my medication. I take three heart medications to treat cardiomyopathy related to being a carrier of DMD. For weeks, I didn’t fill my pill box. I filled my son’s pill boxes several times in that time period, and they never missed a dose of their medication. But I didn’t think I had enough time for my own; I had other things to get done. I do not doubt that those weeks of missed medications are related to the way I feel.

I also stopped working out. I spent every hour of every day either caring for my children or fully engaged in some part of the moving process. With three sons with DMD and four other kids, I will never claim I am the best at self-care, but working out is one way to do something for myself. It reduces stress, helps me sleep better, and keeps me in the physical shape I need to care for my sons. Those weeks of missed workouts also contributed to how I felt.

Finally, I was rarely eating. I’ve never been a breakfast person, but I found myself working through lunch, sometimes not realizing I’d missed two meals until I’d begin to shake and feel lightheaded. I got by with a couple of bites from the kids’ discarded plates, then inhaled whatever I made for the family for dinner. Those missed meals no doubt affected how I felt.

I did everything right for my boys, except take care of their mom and primary caregiver. I hope I never do that again.

If you are a caregiver, don’t be like me. Take care of yourself.

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.