Changes this year helped me learn my limitations as a caregiver

Life feels busy, which is no surprise to me. My husband, Jason, and I share seven children: Lexi, 23; Max, 19; Chance, 17; Rowen, 15; Charlie, 13; Mary, 10; and Callie, 2. Max, Rowen, and Charlie live with Duchenne muscular dystrophy (DMD). Our lives are busy year-round.

This year seems especially hectic because I returned to work outside the home for the first time in more than a decade. I’d always planned to stay home for my family. When three of my sons were diagnosed with DMD in 2010, I was pregnant with Charlie, Max was 4, and Rowen was a toddler. I wanted to commit my life to care for them.

I understood that Duchenne was going to work its way slowly throughout their bodies, robbing them of their precious ability to walk and use their arms. I knew that eventually, their organs would fail and DMD would end their lives. I wanted to be with them for as many minutes, hours, days, and years of their life as possible, knowing that Duchenne would one day steal them from me.

In the early years, I found it hard to be away from them. Knowing that their lives would be cut short made the minutes I was apart from them feel like torture. My heart ached. The idea of my sons going to day care, or having anyone other than me be the one to provide their care, seemed like a cruel punishment. I wanted to be with them as much as possible.

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I know that sounds suffocating. But it was the only thing that made sense to me when my sons were young. I realize now that overwhelming grief propelled me to hang on as tightly as I could. I felt no control when Duchenne entered my life so unexpectedly and affected my family so immensely. Thus, controlling my children’s care became important to me.

It’s important for me to share that the level of care I wanted, planned, and tried to give my children was unsustainable. If I were the only one to care for them, making every decision and spending every moment with them, I’d burn out and have nothing to offer them in a matter of months.

In all honesty, even with that knowledge, I tried my best to be all they needed me to be. A year ago, we were doing as well financially as we’d ever been, and the kids were all doing great. But I was exhausted every day. I didn’t even realize it then, but hindsight is clear. I’m not sure how I was functioning.

My husband traveled a lot for work. After a lengthy process, we were about to start a new clinical trial, and I was home every day. I cooked every meal, cleaned all the clothes, cleaned the house, showered the boys, and managed all their appointments and therapies. And although we were celebrating Lexi’s upcoming wedding and Max’s graduation from high school, I felt lonely and depleted.

Lessons from a necessary shift

I needed to make changes, but I didn’t exactly know how or what to do. To my surprise, however, returning to work and letting Max live on a college campus are teaching me the most important things I’ve learned as a caregiver, helping me find rest and time for things other than Duchenne.

I don’t have to do it all to be a good mom. My teenage sons didn’t want Mom to be the one to do and know everything going on in their lives. They wanted more independence.

That’s why Max going to college has made such a difference. He has caregivers on campus, which make his life and mine easier. It’s nice to have someone else showering and transferring Max. His caregivers have felt heaven-sent.

They’ve also become his friends and have given him a social life and support system outside our family. They’ve relieved Jason and me of some of the pressure and exhaustion of caring for our three sons with DMD. And because Max goes to college in our hometown, they’re going to start helping us with Charlie and Rowen at our house when we need it.

I cannot believe that Max is living on campus, something I’d dreamed of but also stressed about. But it was what we needed. I found help, but also realized it was good for me and my sons to have caregivers who weren’t me. Sometimes, life forces us to make changes that feel hard and uncomfortable, but prove to be beneficial. This year has been one of those times.

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.