Coping With the Stress of Caregiving

Being the mother and caregiver of three sons living with Duchenne muscular dystrophy brings a lot of stress. Much of it is everyday stress that I have learned to live with and don’t always notice — like knowing that three of my children have a fatal and incurable disease, and doing all the extra little tasks and planning required to navigate a typical day. I’m so used to this daily stress that it has become part of my routine.

It wasn’t always this way. In the first year or two after the boys’ diagnoses, the stress was new, and that newness made it hard to put one foot in front of the other. Every time I learned a new thing about how the disease affected my sons, it was enough to send me into the deep end.

But as the years passed, I became an experienced Duchenne mom with a new normal. I sometimes mourn the life I might have had without Duchenne, but I don’t dwell there.

When caregiver stress gets to be too much

But there are still times when the stress is more than everyday caregiver stress.

Two weeks ago, my husband took our sons with Duchenne to the neuromuscular clinic. The reports were good for the most part, but not being there, and receiving constant dings on my phone from new test results posted in MyChart, made things rough. A cardiac MRI revealed some heart weakness in my oldest son, Max. It’s not affecting his heart function, and we have been proactively treating it for years, but knowing it is there is worrisome. Also, some X-rays showed a new curvature in the spine of my middle son, Rowen, that we will continue to monitor.

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Last week, we had a ceiling lift system installed in our house. Unfortunately, the installation process did not go well. The bathroom portion of the lift was installed wrong, and parts of the job had to be redone. The installation team, who were strangers to us, were not happy about having to redo half a day’s work, and the tension was thick.

Also, last week, Rowen’s instructional assistant was not at school because of a miscommunication, and no one was around to help him. He tried to go to the bathroom himself, and his dignity took a hit. It was a terrible situation for him, and not being there to prevent it from happening took a toll on me.

All of that was more than the everyday stress I usually carry and can handle. As a caregiver, I do my best to protect my sons from having to experience and take on so much. Unfortunately, I end up packing it all in, and then, when more things happen that I can’t deal with, I reach a breaking point.

I ended up at the doctor. Everything checked out OK, but the doctor was not impressed with my stress level, and told me to take some time for myself, which is hard to do when others depend on you to help them meet their basic needs.

Looking for the good, the helpers

I spent the end of last week taking a timeout twice a day to lie down, or find a quiet space for just 10 or 20 minutes. I cried, too. A friend told me that it’s good to cry; it’s cleansing for the soul. I think my friend is right. I felt much better after a few good cries.

It is not possible for me, as a mother and caregiver, to live without stress. There will always be weeks or seasons when the pressure is more than I can handle. I believe there are times we are given too much. But I also think it’s essential to look for the good during those times.

As Mister Rogers said, “Look for the helpers.”

Last week, when I paused, I found the helpers. A friend spent time letting me cry and hugged me. A son’s teammate gave him a ride home. A substitute para-educator made school much better for Rowen. A resilient husband made sure the lift installation was correct. And then, a good turn of fate happened when my husband’s work trip was cancelled, allowing him to be home with our family all week.

I count both caregiving and mothering among my blessings. However, I recognize that both of those jobs can be hard. Looking for the good and accepting help are important to being good at both.

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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.