Muscular Dystrophy: Guide to CareGiving for the Young
When we think of care giving, we typically imagine taking care of an elderly loved one who’s afflicted with illness or old age. We very rarely consider that we could find ourselves caring for a young child – or grandchild – who is chronically ill. For families living with Muscular Dystrophy, care giving can become a full-time job.
Facing the Diagnosis
“When you’re caring for a child who has functional loss, your initial dreams for that child feel like they have slipped away and may need to change. With the elderly, most can at least justify that they’ve lived a long life and fulfilled their dreams,” Pat Furlong, founder and CEO of Parent Project Muscular Dystrophy says. “We all want the best for our children — for them to grow up, grow old and enjoy their lives. When a catastrophic diagnosis is made, we don’t know what’s going to happen, and the plan we had in our heart has to change.”
Muscular dystrophy refers to a group of degenerative genetic diseases that weaken the body’s skeletal muscles, or the muscles that control movement, according to the Muscular Dystrophy Association. Those affected by muscular dystrophy have missing or incorrect information in their genes, preventing them from making the proteins necessary for healthy muscles.
There are many types of muscular dystrophy, most of which tend to have an early onset period — some as early as birth and infancy, others into childhood, the teen years and early adulthood — and generally affect males. According to Parent Project Muscular Dystrophy, the types of muscular dystrophy that affect children and young adults typically begin with developmental delays in speech and motor skills in toddlers and children. As the disease progresses, fatigue is present and more frequent use of assistive devices (wheelchairs, walkers, devices to assist breathing) are necessary. In the most severe cases, the affected individual will need permanent assistance from an in home caregiver, and will be confined to a wheelchair or electric scooter. In some cases, the heart and muscles required for breathing are affected, which can be fatal.
Caring for the Young
When caring for the young, Furlong suggests taking advantage of any and all resources available in your area, including state assistance and home care services. “If you’re providing care 24 hours a day, seven days a week, and are the person responsible, it can feel very overwhelming. You have to solicit help.”
Although the same principles apply to basic care throughout the ages, there are some special considerations to keep in mind if you’re the care giving parent or family member of a child with muscular dystrophy. “It’s a never-ending process of accommodation and re-accommodation, as the disease progresses,” Furlong states.
Creating a Safe Home
Upon the diagnosis of muscular dystrophy, you’ll need to make sure that home is a safe, healthy place for the child affected. Furlong notes that along with all of the larger adaptations there are some smaller considerations to remember: Can your child’s wheelchair fit underneath the dining room table so that they can join the family at mealtime? If your child is still walking, are there obstacles in the home that may lead to a fall? Can your child access the bathroom sink, so s/he can maintain independence in grooming for as long as possible?
Above all, Furlong suggests planning ahead, as there are many costs, insurance issues and waiting lists for equipment that your child may not need now, but will eventually. Providing easy mobility so your child can maintain independence will most likely be the biggest challenge. Parent Project Muscular Dystrophy suggests special equipment and additions, such as wider doorways, ramps, wheelchair-accessible rooms and lifts. Muscle weakness can present sleeping problems, so they also recommend speaking with a physical therapist about special beds and mattresses that will help your child sleep comfortably.
Providing a Strong Support Structure
“It’s common and certainly appropriate that when parents have a child who’s been diagnosed with a debilitating illness, their instant reaction is building a protective bubble,” Furlong says. “Parents want to protect their child in every way possible, and sometime this can lead to over-protection and discourage independence. Parents need to change that mindset.”
According to Furlong, it’s important to prepare children to grow up, grow old and be independent, regardless of a diagnosis. They need to be encouraged to speak up if they need assistance, do a task themselves if they’re able, and function in this world — to the best of their abilities — just as their siblings and peers do. Providing a family support structure that encourages this is imperative. Furlong says that simple things, like letting your child order his or her own dinner at a restaurant, expecting your child to obey all household rules, and having your child participate fully in school will take the focus off of disabilities, positively repositioning it to abilities.
Coping as a Family
Muscular dystrophy affects the whole family, not just the individual diagnosed, and, before you know it, becomes the family’s main focus. It’s important to know that everyone will deal differently day-to-day with the implications, and that it’s OK for each family member to be on their own journey with muscular dystrophy. Furlong compares it to watching a football game (although it isn’t a game in any way). Everyone is viewing the same event (the diagnosed child living with muscular dystrophy), but some are looking on from different seats, or vantage points.
“Parents need to be honest with children. They deserve a diagnosis,” Furlong notes. “It’s only fair that symptoms (weak muscles, increased fatigue, etc.) are named.” Finding an honest and acceptable way to talk with children about their physical experience is key to coping with—and accepting—the condition.
Having a united and open household will give each family member the support and space to cope accordingly. Furlong advocates for plenty of family time that isn’t centered around muscular dystrophy: “Have a family meeting, family movie night, or whatever it is that brings everyone together as a family.” She also suggests a weekly getaway for parents or the head(s) of the household, whether it’s one hour or one evening — as family leadership must be strong for the family to stay strong.