Managing the Day-to-Day: Tips for DMD Caregivers

Last updated March 3, 2025, by Mary Chapman
Fact-checked by Patrícia Silva, PhD

 

If you are a caregiver for a family member with Duchenne muscular dystrophy (DMD), establishing a daily routine can make caregiving less stressful for you and your family.

DMD can affect every aspect of your loved one’s daily life. Over time, walking becomes difficult, and the condition, which predominantly affects boys, can cause breathing and heart problems, among other symptoms.

Medical advances have helped those with the neuromuscular condition live longer and fuller lives, with treatments that can ease symptoms and even slow progression.

Still, DMD caregivers can find their role emotionally and physically difficult. Preparing for the day to day, as well as the unexpected, can help you better navigate the challenges.

Daily routine

Every DMD daily routine is different, based on factors such as your child’s condition, disease progression, and level of independence. It will change over time and even be different every day. Daily tasks may include assisting with dressing, exercising, medications, meals, and transferring from one assistive device to another.

One family in Grayson, Georgia, is navigating the daily challenges of DMD. Wilfredo Hernandez Rivera and his wife, Griselle Mendez, have a 21-year-old son, Alejandro Hernandez Mendez, who was diagnosed with DMD at age 6.

At around 8:30 each morning, Wilfredo awakens his son, helps him into a wheelchair, gets him to his modified bathroom, and offers assistance as needed.

“I help him with clothing, his pants, and socks,” says Wilfredo, who stopped working as a chemist to become a full-time caregiver for Alejandro when he was diagnosed. “I brush his hair. Then he goes downstairs in a stair lift, and he’s transferred into a wheelchair for breakfast and medications.”

Having a set daily routine makes it easier to pay attention to any new or emerging needs. Some issues to watch out for:

• When assisting with getting out of bed, first ask your child how they’re feeling in case you need to make adjustments to their usual routine.
• If your child takes any oral medications, watch how they are swallowing as DMD can start to affect throat muscles, particularly as the disease progresses.
• Make sure your loved one is having regular bowel movements, since weakness in muscles that move food through the digestive tract can lead to constipation.
• At meal times, pay attention to any difficulty lifting a cup, or signs that a piece of meat or other food requires cutting into smaller pieces.
• If your child is starting to become too heavy for you to maneuver or lift safely, talk to your healthcare team about lifting techniques, assistive devices, and potential home adaptations.
• If your child goes to school, check with their teachers to make sure they continue to have the right assistive devices that are working properly.

Care coordination

Caregivers are usually the ones responsible for coordinating medical appointments. Alejandro’s DMD care team includes a cardiologist, nephrologist, pulmonologist, and physical therapist. A nurse visits weekly to administer his medication. His father coordinates all visits with these specialists.

Some ways to manage care coordination include:

• establishing regular times for waking up, eating, activities, and going to bed
• trying to schedule appointments for the same time of the day
• using an electronic or whiteboard calendar to track dates and times for medications and appointments
• touching base regularly with your care coordinator, who helps to facilitate communication between you and your healthcare team members
• helping your child be part of their care decisions as is age-appropriate
• preparing older teenagers with DMD for the transition from pediatric to adult care, which may involve changing doctors or other healthcare team members
• staying updated about the latest treatments and clinical trials, including through Muscular Dystrophy News Today.

If your child will be attending school soon, ask their doctor to help create a health plan that outlines what the school should do in case of certain healthcare needs.

You should also have a 504 plan, which is for students with a disability or chronic illness. The plan can include accommodations such as excused absences for medical appointments and extra time for assignments.

Family life

While your loved one with DMD will naturally require extra attention, you want to make sure everyone in the family feels loved, involved, and cared for.

Spouses should carve out time for each other. The demanding nature of caregiving can cause stress and feelings of isolation, which can affect your relationship. Setting aside time to be together can help to maintain your emotional connection, provide emotional support, and prevent caregiver burnout.

It’s also important to spend time with each child and take turns attending their social, educational, or sporting events. You want to make sure you are supporting the emotional well-being of all your children and help them maintain healthy sibling relationships.

Wilfredo and Griselle say they work on family relationships every day.

“The other kids are very understanding,” Wilfredo says of their three younger children. “[Alejandro] gets most of the attention but we find time for the others to make sure they have what they need. We make sure we go to their events. We support them. We are a united family. If someone has a game, like volleyball, the whole family goes and sees.”

While it isn’t always easy, Alejandro’s parents figure out any scheduling conflicts. “That way, everyone feels like we love them equally,” Griselle says. “And we try to have vacations together, and do something everyone can do.”

They also encourage other family members to pitch in, which can promote family unity. For example, if Alejandro needs to get to his social Hispanic group or to the movies, his brother will sometimes drive him.

Tips for navigating DMD as a family:

• Encourage each of your children’s unique talents and interests
• Involve the other children in decisions about family activities
• Try to reduce daily family stressors with clear planning, teamwork, and scheduling
• Connect with other families in similar situations through support groups, which provide a space for the other children to feel understood and share experiences
• Encourage everyone to express their feelings about the situation, validating emotions such as frustration or envy, but if they don’t want to talk, respect their need for privacy
• Consider participating in a family support group; family counseling may also be helpful.

Self-care

You may be so focused on your loved one that you don’t see how your caregiving affects your own mental and physical health, and your overall well-being.

Caregiving can be very stressful. Over time, such stress can harm your health. That’s why it’s important to practice DMD self-care.

Signs of caregiver burnout include:

• worrying often
• frequently feeling tired
• gaining or losing weight, with changes in appetite
• sleeping excessively or not enough
• becoming easily annoyed or frustrated
• losing interest in activities you once enjoyed
• withdrawing from friends and family
• misusing alcohol or drugs, including prescription medications.

To help you manage caregiver stress and practice self-care:

• Make a list of what help you need, then share it with friends and relatives and let them choose what they want to do to help
• Focus on what you can do and remind yourself that you’re doing the best you can
• Write down what’s important, then break large tasks into smaller ones that you can do one at a time
• Look for local caregiving resources for rides, meal delivery, or house cleaning, for example
• Get support, whether by finding an online group or a therapist.
• Find ways to eat and sleep better
• Stay on top of your own health and have the screenings your doctor suggests.

You can’t properly take care of your loved one, or other family members, if you don’t practice self-care. Dedicate the time to look after your physical and mental health, and do activities that you enjoy.

Community and support

It’s common for caregivers of a child with a chronic illness such as DMD to experience mental health issues such as anxiety and depression. Contributing factors can include constant stress and strain, uncertainty about the future, feelings of helplessness, and trouble sleeping.

To get support, try to:

• Reach out to your child’s healthcare team for referrals to a social worker, who can help identify community resources
• Join the forums on Muscular Dystrophy News Today
• Participate in online communities for caregivers in similar situations
• Check with your local government for services and programs for families of children who are chronically ill or have special needs
• Connect with national organizations such as CureDuchenne, Muscular Dystrophy Association, and Parent Project Muscular Dystrophy to stay informed about Duchenne issues and advocacy efforts.

Griselle and Wilfredo draw support from CureDuchenne and fellow caregivers whom they met at the organization’s conferences. The family has attended CureDuchenne’s Futures National Conferences, which offers educational programs for the Duchenne community while also providing opportunities to connect.

“Our kids love the conferences,” Giselle says. “And we can meet other parents.”

A group of those parents, including Griselle and Wilfredo, meet virtually most Saturdays.

“We talk about clinical trials and about what’s going on in our lives. We have the oldest [child] in our group, so they ask us questions,” says Griselle. “It’s a good way we can share and listen.”

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