Accepting help is difficult for me as a mom and a caregiver

Late afternoon sunlight drifts into the house, brightening the blue paint on the walls. The room feels cheery and welcoming. Wicker baskets hold soft blankets, pillows cushion the couch, and dogs are sleeping on the rugs. I love walking into this room, and every room, in my home, which I have carefully curated to provide a calm and cozy haven.

I have seven children: Lexi, 24; Max, 19; Chance, 18; Rowen, 16; Charlie, 14; Mary, 10; and Callie, 3. Max, Rowen, and Charlie are all living with Duchenne muscular dystrophy. Life with seven children, including three with Duchenne, can be stressful. We’re always busy, and it’s crucial to me that our home feels like a soft place to land.

As a child, I grew up in the foster care system. My home was constantly changing, and life never seemed calm or safe. That early life experience motivates me to provide a sense of home where my children always feel secure and loved.

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As a quiet introvert, my home is where I find solace and can recharge my social battery. At home, I am comfortable, free to be my quiet, reflective self and let my creativity flow through writing, gardening, or working on home projects.

Until recently, Duchenne was a motivating factor for me to work hard to create an ideal space for my children, and of course, it demanded that we incorporate a ceiling lift, a chair lift, and an accessible bathroom, among other features that make the house accessible to my sons. But that never took away from the feeling our home gave me.

However, that is no longer the case. My sons now need more help at home, and I am struggling to share my space with the extra caregiver they benefit from.

Adjusting to extra caregiver help

Taking care of three sons with Duchenne has always been challenging, even when they were little. It was tough to find time to put on their ankle-foot orthotics, complete our home stretching regimen, and perform cough assist therapy for all three. But between my husband and me, along with the occasional help, we got it done.

However, now that Rowen and Max have both stopped walking, they depend on us for so much more: using the restroom, taking a shower, getting dressed, filling up their water bottles, reaching their game system, picking something up for them, or retrieving something from their closet.

It is growing increasingly complex to meet their daily needs and still do their therapies. Sometimes, it’s not possible, and things don’t get done.

We need help. We’ve been fortunate that the boys qualify for medical programs that cover the cost of a caregiver and that we have someone our sons like and who is willing to work as many hours as possible. I know we are lucky. I am aware that many families desperately need help and cannot find or afford a caregiver.

However, it is hard for me to have help in the house every day. I need the most help getting the boys out of bed in the mornings, but I also need slow mornings — time to sit on the couch in my pajamas and drink my coffee. I’m not sure how to do that comfortably with someone in my house. I’ve been scheduling help in the afternoons, but the boys don’t need as much assistance then, so the caregiver mostly just spends time with them. However, this does give me a moment to catch my breath.

I need help getting the boys showered and dressed in the mornings and into bed at night. Even with the lifts and all of their durable medical equipment, these tasks are taxing on my body. They hurt my back.

I know I need to have the caregiver over in the mornings. I need to learn to be comfortable. I don’t have an option. I need help; I can’t do this by myself for the rest of my life or my sons’ lives.

But I’m resistant. I don’t want to get used to it. For as long as I have known that my sons have Duchenne, I have wished, hoped, and prayed it away so that they wouldn’t have to suffer or endure the constant losses this condition hands out. But for the first time, I find myself wishing it away so that my home life doesn’t have to change. Accepting help is a part of caregiving that I never expected to be so difficult.

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.