DMD caregiving: Finding your inner strength

Last updated March 3, 2025 by Susie Strachan
Fact-checked by Patrícia Silva, PhD

When you’re a caregiver for someone with Duchenne muscular dystrophy (DMD), looking after your own emotional and physical well-being can help you stay resilient and manage stress.

DMD, which primarily affects boys, causes muscle weakness and potentially respiratory and heart problems that can worsen over time. This progression can make caregiving more emotionally and physically intense.

But by looking after your own physical and mental health, you can be better prepared to help with managing DMD and providing the steady care your loved one needs.

The challenges of being a caregiver

Caring for someone with DMD may involve responsibilities, from assisting with mobility and daily tasks to coordinating medical care.

As symptoms progress, with increased muscle weakness and reduced mobility, you may be needed for more hands-on assistance, such as with getting in and out of bed, dressing, and using the bathroom.

You may also be coordinating medical appointments and treatments, which can require significant time and energy to ensure your loved one receives the best care.

Because managing DMD can be emotionally overwhelming, you may find yourself at times feeling isolated or unsure of where to turn for support. Your own needs may feel like they’re on the back burner. It’s important to recognize how much you’re doing and remind yourself that you need nurturing, too.

Muscular Dystrophy News Today advocacy partner Betty Vertin has written about her own experience of dealing with caregiver burnout for her three sons who have DMD. She noted how much she wanted to be with her sons Max, Rowen, and Charlie as much as possible, and be involved in all manners of their care.

“It’s important for me to share that the level of care I wanted, planned, and tried to give my children was unsustainable,” she writes. “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.”

Daily care tips

Following a schedule can provide stability for your child with DMD and make it easier for you to manage the many daily responsibilities that are part of caregiving.

As a caregiver, your role may include:

• Helping with transfers, such as moving from bed to wheelchair, and using assistive devices like hoists or lifts.
• Assisting with breathing exercises, monitoring respiratory health, and managing equipment such as cough-assist devices, ventilators, or BiPAP machines.
• Preparing meals that meet specific nutritional requirements and, if needed, helping with eating.
• Assisting with bathing, grooming, and toileting.
• Organizing and administering medications or other treatments as part of a DMD care plan, keeping track of schedules, and monitoring for side effects.
• Offering encouragement, companionship, and reassurance to help your loved one navigate the challenges of living with DMD.
• Being an advocate for your child in the classroom.
• Coaching them on how to speak up on their own behalf with DMD healthcare providers and their peers as they make the transition to adulthood.

Following a structured daily routine can help with stress management for caregivers. Caregiving tips to help with a DMD daily routine include:

• Setting regular wake-up, meal, and bedtime routines.
• Planning daily activities around energy levels, allowing for rest breaks.
• Using visual schedules, apps, or reminders to keep track of tasks.
• Preparing easy-to-eat, nutritionally balanced meals ahead of time.
• Scheduling regular appointments, such as physical therapy, for the same time each day.

Always involve your loved one in decisions about their routine to promote their independence, and to make caregiving more collaborative with you playing a more supportive role whenever possible.

Include yourself as part of the daily routine by setting aside time to take planned breaks to rest, eat, and relax. Self-care for caregivers includes recharging emotionally and mentally, through activities such as regular exercise, writing in a journal, and enjoying hobbies.

Respite care, if an option, can give you a chance to take time for yourself, whether it’s a quiet afternoon alone, a night out with your partner or friends, or a trip somewhere.

Family and caregiver retreats, like those offered by Parent Project Muscular Dystrophy and Muscular Dystrophy Canada, can be a way to connect and find support.

Mental-health strategies

Taking time to rest, connect with others, and pursue activities that bring you joy can help you be more balanced and resilient. Check in with your feelings regularly. Pause throughout your day to notice how you’re doing. Are you feeling stressed, overwhelmed, or needing rest? Columnist Vertin says acknowledging these emotions can help you take steps to manage them.

Self-care isn’t just about managing stress in the moment. It’s also about making space for yourself beyond your caregiving role. Calming practices like deep breathing, meditation, and yoga can help lower stress and keep you grounded.

If it ever feels like too much to handle alone, seek professional help. A therapist can offer guidance and provide a safe space to process your feelings.

Dealing with burnout

Over time, the physical and emotional demands of caregiving may lead to a real concern: caregiver burnout.

Recognizing the signs of burnout, knowing when to get help, and making self-care a priority are important to maintain your health and your ability to provide care for others.

Signs of caregiver burnout include:

• persistent fatigue, sleep disturbances, and feelings of being overwhelmed
• elevated levels of stress, anxiety, and depression
• physical ailments such as headaches and digestive problems
• reduced social interactions and feelings of isolation
• loss of interest in personal health, hobbies, and self-care routines
• inability to balance caregiving responsibilities with work and other obligations.

Remember, getting emotional support as a caregiver is not only OK, it’s necessary for your health and peace of mind. You don’t have to manage everything on your own.

Some practical tips for caregivers in need of support include:

• Talking with your child’s healthcare provider or staff at a Muscular Dystrophy Association care center about how to hire home care assistants.
• Reaching out to friends and family members, as even help with small tasks, like errands or preparing meals, can make a big difference.
• Looking into respite care services to give yourself a break, or connecting with organizations that offer caregiver support programs.
• Searching for organizations that offer financial assistance and transportation options to help reduce the stress of medical costs and mobility challenges.

DMD caregiver support

Caregiving may feel overwhelming at times, but reaching out to other DMD caregivers through support groups can help. Whether in-person or online, a group can be a place for building a support network and for providing emotional support for caregivers.

You may find DMD caregiver support groups through organizations such as:

• CureDuchenne
• Muscular Dystrophy Association
• Parent Project Muscular Dystrophy
• Duchenne Family Support Group (UK)
• Muscular Dystrophy Canada
• Defeat Duchenne Canada
• World Duchenne Organization (international).

Muscular Dystrophy News Today is also a resource for the latest news, first-person columns, and forums that include information about DMD and caregiving.

Muscular Dystrophy News 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 other 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.