Preparing to Be Caregivers for Adults With Duchenne MD
Three of my boys were diagnosed with Duchenne muscular dystrophy when they were small. We’ve spent many years preparing to be caregivers for them as adults with Duchenne.
We remodeled our home, added ramps to the front and back of our house, and upgraded to a wheelchair-accessible van. The boys did not need all these things when we did them, but we wanted to have them ready for when they would need them, as they grew and became young men.
We are in the process of having a ceiling lift installed. Because of the pandemic, because we live in rural Nebraska, and because of the custom build of what we want, selecting a vendor and getting the lift ordered has been a long process.
A salesperson was the first to put into words what we were trying to accomplish. He said: “You need this lift because you aren’t going to be taking care of kids; they are going to become men.”
A dream come true
The thought of this makes me want to celebrate. So many of our children with Duchenne live to become men and women, and while that changes what it will mean for us as caregivers for Duchenne adults, the thought of them reaching adulthood is a dream come true.
Life expectancy is growing for Duchenne, and our children can become college-educated adults with careers and families. That has been the life’s work of many parents, advocates, and scientists, and it’s a reason to celebrate and give thanks.
When my sons were diagnosed, I was afraid to dream of a future out of fear that those dreams would never be realized. But this year, on my social media feed, I saw that many of my Duchenne mom friends were sending their sons to college. Seeing that gives me permission to want the same and to work for it.
Asking for help
Even so, this means they will continue to need physical care — things like help in the bathroom and getting dressed. I’ve had to get used to them still having these needs as they grow up. When three of my sons were diagnosed with Duchenne, the two youngest ones were still in diapers, so it was normal for me to change their diapers, and dress and bathe them.
But they are young men with changing bodies now, and it’s not expected that mom’s help would still be needed for those things. It has been awkward at times. I imagine what the reaction would be from my son who doesn’t have Duchenne if I were to offer to help him with those things.
I’m learning that caregivers for Duchenne adults face their own challenges in being as discreet and respectful as possible, and being mindful of their dignity. My sons show so much grace and poise when they ask for or accept offers of help from their parents. I learn so much from their humility and honesty.
Sometimes they don’t want someone to help them with these personal things, and I don’t know how to ask them to accept that help. That is the part I didn’t think to plan for — how to help them learn to ask for and accept help from someone other than a parent. They will need to learn these things to prepare for life on a college campus or in an apartment. They will need personal care assistants.
I know that generations of people living with Duchenne never had the luxury of learning how to live independently as college students and adults. That realization helps me get through my conflicting feelings and makes me thankful that we get to figure that part out.
One step at a time.
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