With DMD, the transition to adulthood brings many unknowns

One thing I love about living in the Midwest is enjoying all four seasons. The last week of summer is nearly over, and autumn officially begins next week. On a walk yesterday, I noticed the first leaves changing and drifting to the ground.

Another thing about me is that I love to decorate my house for every single holiday and seasonal transition. My pumpkin-scented candles have been burning for a couple of weeks already, and glass pumpkins adorn the tabletops. Fall-colored wreaths can be found in abundance throughout my home.

Each seasonal transition fills me with joy. With every change in the weather, I swap out decorations and look forward to the next season.

Recommended Reading

October 1, 2021 Columns by Betty Vertin

Preparing to Be Caregivers for Adults With Duchenne MD

However, as a mother of three sons living with Duchenne muscular dystrophy (DMD) — Max, 19; Rowen, 16; and Charlie, 14 — I find that another kind of transition isn’t as easy for me.

My boys are at or reaching an age that marks their transition to adulthood. With Max in college, and Rowen and Charlie in high school, they’re beginning to think about their futures as adults.

That is celebratory, as we didn’t always know if we should dream of adulthood for our sons with DMD. I am excited to see what happens, but I wish I already knew what it would look like. There is no clear path forward, and it’s frightening not to know what we do next.

What comes after the transition to adulthood?

When the boys were little, they’d say they wanted to be firefighters or police officers when they grew up. Charlie dreamed of being in the Army. I knew back then what Duchenne was going to do to them, that they would never be able to be any of those things, but I never told them that. I let them dream. Besides, many little boys have the same dreams and outgrow them.

Now, however, I find myself wondering: What happens after they finish school and want independence?

I realize I have no idea what comes after college. Getting my sons to college used to be the goal, but now that Max is there, and Rowen and Charlie are approaching it, I realize we need a plan for what comes next. Again, this is a great problem to have. Years ago, I was afraid to dream of life after high school, so planning for adulthood feels miraculous. However, it’s still scary to navigate without experience or precedent.

Will they live with me and their dad at home? How will we do that? Will we need a live-in caregiver? Will there be a team of caregivers that helps us?

I already have a hard time managing the boys’ care by myself during summer breaks when they are home all day and my husband, Jason, is at work. I don’t think I’ll be able to do it as I get older. Will it ever be easier for me to share my home with a caregiver?

All three of my sons with DMD have said they don’t want to live with us forever. I understand — I didn’t want that either. So what do we plan for?

Will they each get a job and an apartment? How will that work? Will they work full time and receive benefits from their employer, or work part time and stay on Supplemental Security Income? Will they earn enough to support themselves, or will Mom and Dad have to help? Can we afford to support three young men living on their own? Can we find quality accessible housing for each of them?

My favorite idea — the one that seems easiest on my heart and most practical for caregivers and housing — is that they’ll live together, with caregivers, in a house near ours. I’d remodel it so everyone has their own room and bathroom but shares the kitchen, dining, and living space.

My sons don’t love that idea because it doesn’t allow them to have independence from each other, and Mom and Dad would be closer than ideal.

That’s the uncertainty I face when I think about my sons’ future. There are more questions than answers. The predictable change of seasons feels much more comforting than this unknown.

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.