Being a caregiver can be a stressful, yet rewarding, experience. While you value your time with your child, some unique challenges come with caring for someone with Duchenne muscular dystrophy (DMD).
The Emotional Toll of Caregiving for Someone With DMD
DMD is a genetic disease. For many parents, a diagnosis for their child brings a sense of guilt. You may also feel overwhelmed knowing your child must live with an incurable disease that will worsen over time.
Everyone is different, but depression and anxiety are common among DMD caregivers. You may also go through a range of other emotions, such as:
- Shock or confusion
- Fear about what the future looks like for your child
- Grief that your child won’t get better
- Uncertainty about how DMD will affect your whole family
- Helplessness or shame that you can’t handle caregiving demands
Being a caregiver can also lead to:
- Stress about caring for your child while meeting other needs in your life
- Worry that you won’t have enough money to pay for care
- Anger that you can’t get enough help
- Ongoing mental or physical fatigue that doesn’t get better with rest
You may also feel the urge to avoid talking about DMD in front of your child. But you’ll likely only add to your stress if you skip the topic completely. What’s more, many kids want to discuss how they feel about their changing bodies.
Your child’s care team can help you get the conversation going.
Their doctor or a child-life specialist can talk to your child one-on-one or by your side. You might find that you and your child feel more at ease when you can both talk openly about the physical and emotional symptoms that come with DMD.
Handling the Costs of DMD
You might need to quit your job or spend fewer hours at work so you can care for your child. On top of bringing in less income, you may have to cover high health care costs. As your child’s disease progresses, you'll need to buy adaptive equipment that can be expensive.
Your out-of-pocket expenses will depend on what kind of health insurance you have and how much your insurer will agree to cover. Some things you may need to buy are:
- A wheelchair
- An accessible van
- Ramps or lifts
- Other home modifications
- Medical equipment like feeding tubes or beds
A lack of time and money boosts distress in many DMD caregivers. But there are ways to get help paying for your child’s medical needs. Start by discussing any barriers to care with your child’s doctor or social worker.
National groups that offer financial assistance for people with muscular dystrophy include:
- CureDuchenne
- Parent Project Muscular Dystrophy
- Muscular Dystrophy Association
- The Assistance Fund
- Pan Foundation
Defining Your Role as a Caregiver
Depending on your child’s symptoms, you may be “on call” as a caregiver 24 hours a day. Even then, you may feel you should be doing more. But there are many ways to lighten your load as a caregiver while still putting your child’s health first.
Not sure how to set boundaries? Schedule a solo visit with your child’s doctor. This gives you the chance to bring up tough questions you don't want to ask in front of your child.
For instance, you can ask which activities are safe and which ones might hurt your child’s mobility or health. You may want to go over how to get your child special assistance at school or through home health care services.
Keep in mind that you don’t have to handle everything about your child’s care on your own. Family members, friends, neighbors, and others in your community likely want to pitch in. When they ask, try to be specific about what you need.
Keep a running list of things you wouldn’t mind some help with, such as:
- Yardwork
- Grocery shopping
- Taking your kids to and from after-school activities
- Making dinner once a week
- Playing video games or spending leisure time with your child
Also, ask your child’s care team how many hours of respite care you qualify for each week. These are short-term relief visits by volunteers or medical staff. They give unpaid caregivers a break for a few hours up to 24 hours a day. Your child's doctor or social worker can explain more about how this service works.
Here are some examples of caregiver help you can ask for:
- Companionship or supervision for your child
- Rides to and from medical appointments
- Light housework
- Meal prep
- Giving your child medication or nutrition
- Help with bathing, dressing, or other personal care
Finding Time for Yourself
Many parents put their needs behind those of their kids. But as a caregiver, it’s important that you find ways to relax and recharge. Do whatever helps your mind and body feel refreshed. Maybe you’d like to go out for a good meal, watch a funny movie, or get in a morning run before your child wakes up.
While self-care is different for everyone, studies show that people who adapt well to life’s challenges tend to take part in “reserve-building activities.” These are things that tap into more than one part of your brain.
Some examples are:
- Exercise or movement
- Reading
- Creative hobbies
- Spiritual practices
Whether it’s for 15 minutes or a few hours, tap into your wider support network when you need some time and space to decompress.
If you’re not sure who can care for your child when you need a break, ask your doctor or social worker for help. For added caregiver support, contact the Muscular Dystrophy Association National Resource Center at 833-275-6321 or online.
Caring for Your Emotional and Mental Health
Ask members of your child's health care team who you can reach out to for support.
Many muscular dystrophy care teams offer caregivers access to a social worker, psychologist, or counselor. These health professionals can guide you through the ups and downs of life with DMD and the challenges you and your child can expect down the line.
Mental health services that might benefit DMD caregivers are:
- Antidepressant medication
- Marriage and family counseling
- Grief counseling
- Behavioral therapy
Many caregivers show signs of burnout, anxiety, and depression. You may not be able to tell on your own whether these things are affecting you. Tell your doctor if you have these symptoms almost every day for at least 2 weeks:
- Sadness or hopelessness that doesn’t go away
- Trouble controlling anger or frustration
- Loss of interest in things you used to enjoy
- Sleeping a lot or not enough
- Lasting restlessness
- Physical pain you can’t explain
You don’t need to manage caregiving or caregiver stress on your own. Reach out to your loved ones, doctor, social worker, or others on your child’s care team for support. Groups like Parent Project Muscular Dystrophy, CureDuchenne, and the Muscular Dystrophy Association are also good resources.
Show Sources
Photo Credit: JohnnyGreig / Getty Images
SOURCES:
Cristian Ionita, MD, associate professor of clinical pediatrics (neurology) and director, Pediatric Neurology Residency Program, Yale School of Medicine; co-director, Yale/MDA Pediatric Neuromuscular Clinic.
Kristen Alianello, registered nurse; neuromuscular nurse coordinator, neuromuscular program, Lurie Children’s Hospital.
Journal of Neurology: “Quantifying the burden of caregiving in Duchenne muscular dystrophy.”
Muscle & Nerve: “Burden, professional support, and social network in families of children and young adults with muscular dystrophies.”
Health Expectations: “Parents’ experiences of living with a child with a long-term condition: a rapid structured review of the literature.”
Parent Project Muscular Dystrophy: “Caring for the Caregiver,” “Funding Sources,” “Adjusting to the Diagnosis.”
CureDuchenne: “Financial Assistance.”
Muscular Dystrophy Association: “Equipment Assistance,” “Guide for Caregivers.”
The Assistance Fund: “The Assistance Fund Now Providing Financial Assistance to Patients with Duchenne Muscular Dystrophy.”
Pan Foundation: “Duchenne Muscular Dystrophy.”
Journal of Patient-Reported Outcomes: “Drivers of caregiver impact in Duchenne muscular dystrophy: a cohort study.”
