Caregiving sometimes feels like walking a tightrope

My heart is walking a tightrope. I’m a 45-year-old wife to Jason and mother to our seven children: Lexi, 23, Max, 19, Chance, 17, Rowen, 16, Charlie, 14, Mary, 10, and Callie, 3. Three of our children, Max, Rowen, and Charlie, are living with Duchenne muscular dystrophy (DMD).

This year, my life has changed in many ways. My oldest daughter, Lexi, got married and moved almost four hours away to live with her husband. My oldest son, Max, graduated high school and lives on a college campus. Chance will graduate in May and go to college nearly six hours from home next year.

We’ll have four children living at home next year, two of whom will be in high school. Our youngest daughter will start preschool and day care. I’d always heard the expression, “The days are long, and the years are short,” but it wasn’t until my children neared and reached adulthood that I completely grasped the meaning of that phrase.

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Additionally, I returned to work, the first time I’d worked full time outside the home in 17 years. I returned as a long-term substitute teacher and have agreed to at least another year. To do so, I’m taking classes to become certified in special education.

That’s why my heart feels like it’s treading a tightrope. My children are getting older, including my sons with Duchenne. In the past weeks, several young men in the Duchenne community have passed away, some suddenly. I feel like someone is squeezing my heart.

Overwhelmed with fear and decisions

I live with daily fear that my sons are going to die. I wish someone could tell me I’m just being dramatic, but the truth is that with their diagnoses, each year that passes brings the reality of my fear closer.

I’d like to know if my decision to continue work is right. What if something suddenly happens to my sons with DMD, and I’ve missed spending precious time with them?

I chose to work in a school because I’m home over the summers and during school breaks when they’re home. But as they get to high school and college, their schedules aren’t so structured, and there are hours of the day when they’re home, and I’m not. We can cover those hours with paid caregivers, but is that right? Should it be me? I want it to be me, yet I like my job, my work colleagues, and my financial contributions.

I don’t know where to step next. I fear that I’ll fall if I take the wrong one. I know I could land in a dark place full of anxiety, grief, guilt, and questions of what could’ve and should’ve happened.

That’s not the only tightrope my heart is grappling with. In my last column, I mentioned how overwhelmed I felt, especially as my husband travels so much for work. When he got home late Sunday night, I was coughing and had a fever.

I’m the primary caregiver in the house, but my family isn’t sure how to take care of me. When I wanted to take a hot bath to soothe my aching muscles, one son drained all the hot water in the house during his shower, and another complained because he wanted to shower and didn’t get why I’d take a bath. My husband, working from home on a snow day here in Nebraska, kept disappearing to work, leaving me to fend for myself and care for the kids.

I’m not having a pity party, but I wonder if it’s because I’ve never modeled taking care of myself. As I’ve shared in previous columns, I realize that I’m more than a caregiver to others, even as I’m not caring for myself. If I make room for a workout, I think I’ve practiced self-care, so I forget about other actions that help me, like sleep, time away from home, or doing things I enjoy. How is my family supposed to know how to care for me when I don’t know how to do it, either?

If I decide to stay home and be a full-time caregiver and mother again, would I give up the parts of me I found this year, or would I become a better caregiver for my family and myself?

I don’t know the answer, and I don’t know how to find it. I love being a mom more than anything, but I know I’m a not a good mom or caregiver if I don’t care for myself. I’m less certain I can find the right balance than I am that I can walk an actual tightrope.

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.