I’m taking steps that will lead me away from caregiver burnout

I wrote last week that I have been overwhelmed this summer by the demands of being a mom and caregiver.

I have seven children with my husband, Jason: Lexi, 25; Max, 20; Chance, 19; Rowen, 17; Charlie, 15; Mary, 11; and Callie, 4. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD). Caring for my three sons with DMD has left me feeling frazzled and exhausted, especially as we’ve learned to manage Rowen’s newly broken femur.

I wish I could say that I am feeling much better this week, that I had plenty of rest and lots of help, and that I’m like a new person. While I did make some progress, when caregiving becomes stressful and the caregiver is tired, that feeling of being overwhelmed doesn’t just dissipate.

A new caregiver came over who will help one night a week with the bedtime routine, and I hope to see that expand. I also had one great night of sleep and a couple of good nights, all of which were needed and appreciated, and I had a good cry in bed one night as I said my prayers. Those tears running down my cheeks lifted the weight off my shoulders. Sometimes I don’t realize how much I am carrying until it lifts.

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Admitting my stress makes me feel guilty

When I feel overwhelmed, I tend to think it’s from caring for my sons with DMD, but after spending many afternoons this summer with my two young daughters, I realize it’s the combination of caring for my sons and being a mom to all my kids.

I love having a big family, and I’ve written about how it adds to the quality of Max, Rowen, and Charlie’s lives. It gives my sons many opportunities to meet people, share friends with their siblings, and get out of the house to attend sporting events and performances. Not to mention the abundance of love.

I rarely share the more stressful side of having a large family and three sons with Duchenne because it makes me feel guilty. I feel guilty when I give more of my time and attention to Max, Rowen, and Charlie. Most of the time, though, their needs demand it. They need me more.

It wasn’t always like that. When they were young and before the disease had progressed, they got to do most of what their other siblings did. I went above and beyond to make sure they got to experience things I knew they’d someday be unable to, and Lexi and Chance were there for all of it and enjoyed it just as much. I was giving them all special childhood memories together, and it didn’t seem that hard.

Those five kids have all grown up, and their interests have changed, but the two youngest girls have seen pictures and videos of all the things their older siblings got to do and expect the same, and I want to give them the same childhood magic.

I don’t regret my busy afternoons and fun activities at all, but I am much older, too. On top of that, Max, Rowen, and Charlie are no longer little, and taking care of them involves lifts, slings, wheelchairs, and hours of care each day. It makes me tired.

I would love to wake up, get my sons up and ready, and then have a little time to relax each day. Instead, my days are packed full of summer magic. Once my sons are settled, I’m off to make memories with Mary and Callie.

Admitting that it is harder this time around makes me feel better. It also makes it clear to me that scheduling quiet time for myself each afternoon doesn’t have to take away from caring for my sons or enjoying summer activities with my girls. There are 24 hours in a day, and I only need one or two each day to keep myself from feeling overwhelmed. This realization is another small step away from caregiver burnout for me.

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 Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to muscular dystrophy.