Caregiving for Someone With Muscular Dystrophy

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Whether you are a parent, loved one, or a care professional, caregiving for someone with muscular dystrophy requires tremendous physical, mental, and emotional stamina, as well as education about the disease and all it can entail. Do your best to prepare yourself for what you may encounter. Arm yourself with information that can help you provide the best assistance to the person in your life with MD. Tap into resources that can lend you a hand on your caregiving journey. And, most of all, remember that you are not alone. Seek support along the way.

Knowledge

Knowledge of muscular dystrophy can give you a sense of control over what can be an unpredictable and challenging experience as a caregiver. By knowing what could happen, you may be better able to anticipate and respond to your loved one's challenges. If you attend an individual's doctor appointments, knowing more about the disease can also help you ask questions on their behalf and otherwise advocate for their care if they've welcomed you to do so.

As you gather information from different sources—physicians, websites, organizations, other caregivers and patients—keep these fundamentals in mind:

  • Remember that there are different types of muscular dystrophy. What someone experiences can differ depending on the type that they have.
  • The primary symptom of muscular dystrophy is muscle weakness, but other symptoms and complications can arise. The severity of these can change in your loved one over time. So, the care you need to provide today may not be the care you need to provide tomorrow.
  • The rate of progression differs from person to person. Try not to compare your loved one's experience to others.

Practical

If you are living with someone who has MD, you will likely need to make some practical changes that can help make life easier.

Home

You can help your loved one navigate his home more easily by making some strategic changes. Though some may be time-consuming and costly, they can have great benefits. The Muscular Dystrophy Association (MDA) offers these and other tips:

  • Create a bedroom (and, if possible, a bathroom) on the main floor of the house.
  • Reduce struggling by placing items on low shelves or implementing technology that allow your loved one to, say, turn on lights with their smartphone.
  • Add a ramp to avoid the need to use outdoor steps.
  • Consider widening doorways to allow for easier passage with a wheelchair, or install hinges that swing in and out.
  • Opt for a shower chair or other accessibility products. There are some that help not only your loved one by you, the caregiver, such as lifting systems.

Getting Around

You can adapt your own setting to be more suitable for getting around with MD, but you cannot change the whole world around you. Get to know which areas around you are accessible for people with disabilities. You may also consider modifications to your car to make entry and exit easier, as well as devices such as a cane or wheelchair, which can help your loved one be a bit more stable when out and about (even if they don't use them normally).

Financial Matters

When it comes to financial issues, support, encouragement, and guidance from others who have been in a similar situation can be helpful. 

As you navigate health care, you may be faced with denials of coverage by your health care plan. The process of advocating for payment coverage and asking your healthcare providers to resubmit claims for payments can be exhausting, but it is well worth it and often pays off. 

You may be able to get benefits and tax-deductions for out-of-pocket costs related to caregiving. Be sure to save receipts. Familiarize yourself with federal and state tax rules and the specifications of your flexible spending account, if you have one, and consider speaking with an accountant or tax preparer.

Advocating For Your Loved One 

In the school setting and in the workplace, there are more facilities and benefits for individuals with disabilities than ever before. However, despite this, you may need to advocate for your loved one because not every school or work setting is equipped or familiar with what your loved one needs (or, perhaps, what they are legally required to provide).

Get to know your loved one's rights under the Americans With Disabilities Act (ADA); the Office of Compliance of the United States Congress offers a handy, distilled checklist of workplace accommodations required by the ADA.

Your role as an advocate can mean not only asking for accessibility accommodations, but also taking the initiative to show the school or workplace how the practical steps that you are requesting can be taken. Over time, your loved one with MD will learn how to advocate for himself and will not always have to rely on you for help. 

Support

Caring for someone with muscular dystrophy—or any ongoing illness—can be rewarding, but also tiring and isolating. To manage the role of caregiver effectively and avoid burnout, utilize the resources available to you. 

Family and Friends

Whether you’re a parent caring for a child with muscular dystrophy or a loved one caring for an adult, everyone needs a break now and then. Often, family, friends, and even volunteers within your community want to help, but they may not know how to do so.

If someone is stepping in to help you provide care to the person with MD:

  • Be specific about your needs so that your helpers are aware of the tasks that will be required of them when they pitch in.
  • Devise a schedule so that both the person with MD and your respite caregiver have structure and an understanding of how the day progresses from one activity to another.
  • Make sure your emergency contact information is easy to find so that helpers know how to reach you and other necessary people if something unexpected should happen.

Consider other ways people can pitch in and ease your day-to-day as well. For example:

  • Take a friend up on an offer to pick up something at the pharmacy for you.
  • Ask if someone can watch your other children for a bit to give you a break from other caregiving responsibilities.
  • Accept offers to cook your family a meal every now and again.

When family and friends step in to help you, don’t feel guilty about receiving their aid; this is a time for you to relax and self-nurture.

Outside Help

If possible, consider getting an outside (or live-in) personal care assistant who can help the person with MD with bathing, going to the bathroom, getting in and out of bed, dressing, and cooking. You may also consider hiring a nurse (or even scheduling willing volunteers) at night to watch your child or loved one, so you can obtain uninterrupted sleep. Often times, people find that outside help promotes independence for both sides, which will likely be a welcome change.

The Muscular Dystrophy Association (MDA) can be a great resource. It is a remarkable organization that provides a number of resources for caregivers, including online articles and discussion groups, support programs, and a recommended reading list. Furthermore, MDA's Additional Resources page provides information on federal, state, and local agencies that serve the multi-layered needs of the MD population.

In addition to caregiving resources, they offer programs like the annual MDA summer camp, where children with muscular dystrophy can enjoy a week of fun. This free opportunity (funded by supporters of the MDA) also offers parents (and other caregivers) a much-deserved break.

Medical Team

Depending on the type of muscular dystrophy your child or loved ones has, there will be a need for healthcare appointments, often multiple ones.

For instance, your child or loved may have a regularly scheduled physical therapy appointment, either at a clinic or within your home. During appointments, be open to discussing concerns and asking any questions you may have about caring for someone with MD. While you may provide care at home, you are not the only member of a person's care team. 

Other potential healthcare appointments may include:

  • Doctor visits (for example, pediatrician, neuromuscular specialist, orthopedic surgeon, or a cardiologist)
  • Those required for ongoing tests (for example, lung function testing, bone mineral density tests, and X-rays of the spine to check for scoliosis)
  • Vaccination appointments (for example, the yearly flu shot and the pneumococcal vaccines)
  • Nutrition and genetic counselor consultations
  • Social worker visits to assess the need for ongoing services like assistive devices, wheelchairs, ventilators, and lifts.

Reaching out to your loved one's medical team for support and guidance is expected. In the end, open communication amongst all parties will optimize care and quality of life.

Self-Care

Self-care is extremely important as a caregiver. First, it's important to care for your own body. This means ensuring you are getting exercise, eating nutritiously, and seeing your doctor for regular check-ups.

If you’re having difficulty finding the time to exercise or are simply too exhausted, consider time-saving or less demanding ways to fit fitness into your schedule. For example, you can try TV-based, at-home workouts or go for long daily walks in nature or at a local indoor track with your loved one, if possible.

In addition to attending to your physical health, be sure to care for your emotional well-being. Depression is common among caregivers, so watch for symptoms of depression like a persistently low mood, problems sleeping, a loss or gain of appetite, or feelings of hopelessness. If you’re worried about depression, see your doctor or mental health professional.

As a parent, you may also feel a sense of guilt due to "giving" your child a hereditary disease. This feeling is normal, and it can help to talk about it with other parents. If your guilt does not subside or leads to depression, be sure to seek professional help. 

To combat the stress and demands of being a caregiver, as well as share the rewarding side, consider joining a support group for caregivers. You may also consider engaging in mind-body therapies that can promote relaxation and stress relief, like yoga, or mindfulness meditation.

Although caring for a loved one with muscular dystrophy isn’t easy, many do find a silver lining, whether that's gaining a deeper, healthier perspective on life, becoming more spiritual, or simply finding beauty in small, everyday pleasures. Remain resilient and devoted in your caregiving journey, remember to nurture your own needs, and reach out to others for a helping hand.

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