A medical oversight brings caregiving changes in my home
I can no longer be expected to be the caretaker for everyone
The end of the year offered up two beautiful weeks with my family and very few responsibilities. We canceled pool therapy, had no medical appointments, the kids were out of school, and I took a break from writing. We spent 10 days at home, just us. It was exactly what I needed.
But the new year has brought a big change to how I handle caregiving as a result of me messing up the most significant moment of care for my oldest son, Max, who was scheduled to have surgery on Dec. 1.
I share seven children with my husband, Jason: Lexi, 24; Max, 20; Chance, 18; Rowen, 16; Charlie, 15; Mary, 11; and Callie, 3. Max, Rowen, and Charlie all live with Duchenne muscular dystrophy (DMD).
On the day of the procedure, we drove the five and a half hours to Denver, got checked in, and Max was already in his gown when we realized that I hadn’t withheld a medicine that needed to be stopped a week before the surgery.
It was a gut punch to drive all that way only to turn around and come home without having the procedure we had gone there for. I was an anxious mess and felt like I had failed miserably as a caregiver and mother. I typically pride myself on keeping track of things, and yet here, I messed up.
If I’m being honest, it wasn’t just my mistake. Jason and Max went to the anesthesia consultation, but neither of them told me about the medication holds. Still, I always double-check, and this time I didn’t. It felt as if it were my fault. My brain tells me I’m wrong, that Max is an adult, and my husband is capable, but my heart makes me feel awful.
Doing ‘what we will need to do’
As the weeks have passed, though, I’ve come to a couple of realizations.
Firstly, by always being the one to take care of every little detail, I set myself up for failure. Jason and I share three sons with DMD; Max is already an adult, and the other two are nearing adulthood. Yet I tend to take care of everything, regardless of what the men in my life may or may not be capable of.
By my consistently handling everything, my husband and sons have come to depend on me. But when I have a misstep or overlook a detail, no one is there to catch it. If we were all equally responsible, we would catch those things.
Secondly, since my sons were diagnosed with Duchenne in 2010, we’ve had hundreds of appointments, if not thousands. Over the years, we’ve scheduled two at the same time to save time, often at the request of the neuromuscular clinic, as it has been the only way to have them all seen while we were there. And we’ve always obliged, like the polite Midwesterners we were raised to be. Jason would go to one, and I would go to another. But I’m not going to do that anymore.
I’ve tried to limit the time our family spends in hospitals and clinical settings, but my sons’ needs are more complex now, and I can’t afford to miss an important message from the medical team. We are at the point where, if we need to be in the clinic all week or even longer so that I can attend all my sons’ appointments, then that is what we will need to do.
I made a mistake, and it’s been humbling, but it’s helped me make some crucial realizations. My husband and sons cannot expect me to be the medical caretaker for everyone; they need to take more responsibility. However, we can no longer rush through our appointments. We need to take the time to hear and absorb all the essential information.
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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