Back to the basics: My 5-point DMD caregiver self-care plan

“Take care of yourself.”

I hear these four little words so often, yet they can be hard to follow. I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 12; and Callie, 4. Max, Rowen, and Charlie have Duchenne muscular dystrophy (DMD), and I am their full-time caregiver.

I hear those words from the most well-meaning people who may not completely understand what my life is like, but they know I have three sons with DMD and that my life is full of more challenges, heartbreak, and hard work than most. They know that to take care of my family, I need to take care of myself.

I know it’s true, but it’s not easy. What happened to me three weeks ago shows I still have work to do. I ran myself down — I had stopped taking my medication, was barely eating, and was not exercising at all. I was exhausted and felt weak. I wasn’t following the advice to take care of myself.

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Preventing burnout

That experience has prompted me to create a better self-care plan. Part of my problem was setting the bar for self-care too high. I thought taking care of myself meant going on dates with my husband, getting regular pedicures, and setting aside time for bubble baths.

Those things are all good, and I benefit from them, but when I am tired and burnt out, going on a date sounds like so much extra work. To make that happen, I need someone to stay with my sons and other children. For example, if it’s a date with my husband, I also need a plan for what the kids will eat, and I must leave notes for when they need to take their medications.

When I’m running on fumes, that kind of self-care is overwhelming and can even add to my stress. I need self-care practices that are part of my regular schedule and don’t require me to make additional plans.

I have come to understand what I need to do to prevent burnout. These tasks are simple, but necessary and effective. For me, at least in the season I am in, self-care means meeting my basic needs, so I’ve come up with five things I’ll focus on. I may not be able to do them all every day, but I can do most of them, and that will make me feel much better.

1. Take my medication.

The most important thing I need to do is take my medication. I have DMD carrier cardiomyopathy and must take three medications daily. It is nonnegotiable.

2. Eat lunch and supper.

I am not a breakfast eater. I know it is recommended, but I’m just not hungry when I wake up, and forcing food in has never made me feel good. But when I’m busy, I often forget to eat and might not have my first meal until 2 p.m., when I start to feel myself shake and then remember I haven’t eaten.

My children, on the other hand, love to eat. I plan to make myself sit down and eat with them. I won’t let myself finish one thing, then do another, and another, and not eat.

3. Get some sleep.

Sleeping well has been hard for me since my sons were diagnosed with DMD. However, I do know what helps me sleep better. I am working on doing these things every night. I need to put my phone down — no scrolling. Instead, reading, praying, and keeping a lavender diffuser next to my bed help; if none of that works, I take a small dose of melatonin.

4. Shower every day.

I need to shower every day. I don’t have to wash my hair, but I do need to wash my body and face. It’s embarrassing to admit how often I go a day or two without a shower.

It happens like this: I don’t sleep well; my best sleep comes just hours before it’s time to wake up. So I wake up late, and by the time I get the kids ready and where they need to be, the day is half over. So I change my clothes, brush my teeth, use extra deodorant, put my hair in a messy bun, and call it good.

But if I am deliberate, I can shower every day.

5. Make room for exercise.

A good workout that leaves me drenched in sweat is one of the best ways I relieve stress. It’s often the first thing I skip when I get busy, but busyness makes me stressed, so skipping exercise isn’t a good idea. I am now committed to four workouts a week on my Peloton and short walks on the other days.

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.