How my teaching job reminds me that I’m more than a caregiver
However exhausting, work outside the home helps me reclaim parts of myself
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I’m more than a caregiver, but it took a recent life change for me to realize that.
I’m a mom to seven children I share with my husband, Jason, including three of our sons — Max, 19, Rowen, 15, and Charlie, 13 — who live with Duchenne muscular dystrophy (DMD).
Their DMD diagnoses happened in 2010 and 2011. For many years afterward, the boys were not so different from their healthy siblings and typically developing peers. Caregiving at the beginning involved going to appointments, deciding when to start corticosteroids, and mulling if they should participate in a clinical trial. The care then didn’t seem all-encompassing.
And I still had hobbies, including running half-marathons. I belonged to a Bunco game group, and Jason and I regularly went out with friends. Early in my new caregiving role, I still felt I was a wife, mom, friend, and woman. Even with three young boys with DMD and the grief that accompanied their diagnoses, life didn’t change for us overnight; it was gradual.
But when our sons lost ambulation, the level of our caregiving took a sharp jump toward what felt like our total focus. Rowen was 11 when he stopped walking in 2020, and Max was 17 in 2023. They both lost ambulation when they fell and broke their legs. Overnight, they needed help with toileting, showering, and dressing. Since then, I’ve gradually needed to give more time and effort to their care. Now they require almost double my time and energy.
Charlie is still ambulatory, and his remaining acts of independence are a huge help. That’s a daily reminder to me of how much the care needs are greater once the boys can’t walk. I often wonder what life will be like for me once Charlie is no longer ambulatory. Do I have enough left to give?
Caregiving is a gift, and I love that I can care for my children this way. We’re close because it allows me to know them in ways I’ll never know my other children. And I’ll cherish that sacred time, as I know I’ll probably outlive them. It’s beautiful, even if it’s also the hardest thing I’ve ever done.
I often feel exhausted, much like when I ran marathons. Days of caregiving stack on top of each other, and they’re an ultramarathon all on their own.
A new perspective
Recently, I needed to return to work as a special education teacher outside the home. That contributed to my exhaustion in some ways, and I see that if I’m not careful, working all day and coming home to caregiving could lead to burnout.
I don’t want to work outside the home until I retire. Exhausted or not, I love my work within my family more than anything else I’ve ever done. However, I will work outside the home as long as my family needs me to do it. And as a side benefit, my job has helped me realize just how much I’ve lost myself to caregiving.
For one thing, I didn’t have clothes to wear to work when I started. I had a couple of pairs of jeans and nice tops I’d wear to appointments or meetings, but mostly, I dressed in comfy clothes and put my hair in a messy bun. I’d quit caring about my appearance. But now I’ve enjoyed putting together a new, professional wardrobe. I like looking in the mirror and feeling pretty. I hadn’t done either of those things for a long time.
I also had to remember what it’s like to have small talk and do things that didn’t revolve around my family. I realized that although my husband and children had to make adjustments, they were OK when I was gone. Why didn’t I foresee that?
As my co-workers leave work and sometimes go out to eat or work out at a gym, I’ve become aware that I’d quit doing those things as my caregiving responsibilities increased. It became apparent that I’d lost myself. Outside of being mom to seven and caregiver to Max, Rowen, and Charlie, I didn’t know who I was. I rarely did anything that wasn’t for my family. I often felt guilty about taking time to care for myself.
I stopped being a woman who liked to spend time with and look nice for my husband, or spend time with friends, or enjoy a long walk or run. My identity was wrapped up in my family. Returning to the workplace has been challenging, but it’s helping me find myself again. The struggle has been worth it.
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.
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