Caring for your child starts with a healthy, happy you
All parents make sacrifices in caring for their children, and it’s widely acknowledged that parenting is a full-time job.
But parents of children with muscular dystrophy or other neuromuscular diseases know that their job is fulltime and then some. And although this job carries great joy, it also carries a higher-than-average risk of anxiety, depression and exhaustion — commonly called burnout.
It’s easy for parents to lose sight of their own goals and aspirations when faced with the responsibility of caring so completely for another. Remember — only by taking care of yourself first can you hope to avoid caregiver burnout and give your child the best care possible.
The stresses that lead to caregiver burnout can come from many sources, including:
Symptoms of burnout include increased feelings of anger, guilt and dissatisfaction, which may lead to hostility toward or withdrawal from others.
Health problems associated with stress include sleep difficulties and fatigue, body aches or headaches and high blood pressure.
Burnout can cause some parents to neglect their health and appearance, while others may avoid their responsibilities or apply less care and diligence to their day-to-day tasks.
Still others may experience difficulty concentrating or suffer a loss of self-esteem. Some may have changes in their appetite or weight, or turn to alcohol or drugs, cigarettes, junk food or other unhealthy alternatives.
Susan Orloff, occupational therapist and executive director of Children’s Special Services in Atlanta, notes that caregiver burnout manifests differently depending on the person.
Very vocal people, she says, may find themselves yelling or getting upset, or having “a faster trigger than normal,” while a quiet person may retreat, pull back, and be “unable to engage.”
“When you find yourself living in the extreme,” Orloff says, “that’s the sign of burnout.”
Getting caregivers to recognize their symptoms and take steps to reduce their stress load isn’t always easy.
Therefore, health care providers, friends and relatives must “monitor the caregiver and step in when they see signs of self-neglect,” says Richard Schulz, professor of psychiatry at the University of Pittsburgh School of Medicine and director of the University Center for Social and Urban Research.
But in the absence of such a support system, parents have to learn to recognize the signs of caregiver burnout in themselves, and then take action.
Oftentimes, caregivers equate taking time for themselves as “selfish,” and a sort of “desertion,” says Orloff.
She explains that while selfish is about “fulfilling your own specific needs” and getting “what you want, when you want it,” self is “about identity, who you are and intrinsically how you value yourself.”
Orloff says caregivers must have a healthy self-interest to allow for “self-nurturing,” which enables them to care for others because they’re already taken care of.
The inability to see the difference between selfishness and self-interest can make parents feel inadequate, as if they’re not doing their jobs, Orloff says. Recognizing the difference can lead to healthy “time off,” a necessary component for allowing parents to remain centered and in touch with themselves and those around them.
Parents who force themselves to make time for self-nurturing tend to do better at avoiding burnout.
Self-nurturing can include:
Orloff suggests massage.
“It doesn't have to be a $60 massage,” she says. “For $3 for 10 minutes, you can go to the mall and get a mini-massage, and that's all it takes."
An important part of self-care is recognizing your needs and limitations, and asking for help.
It’s difficult to know what will work for all parents, but research suggests family-centered respite can help, says Susan Cadell, associate professor and director of the Manulife Centre for Healthy Living at Wilfrid Laurier University in Ontario, Canada, who is conducting a study to determine the factors that lead to personal growth in parents who care for children with life-limiting illnesses. Check online or call (800) 810-0721, for more information or to participate.
Respite allows parents time away from their child or allows them to focus on their relationship with the child instead of on their physical care.
Cadell notes, “Parents often find it helpful to meet and interact with other parents and families in similar situations.”
Likewise, Orloff recommends that parents — particularly single parents — build a network. She suggests joining a parenting group and asking others about the resources that get them through.
Most important in self-care is recognizing the bright spots in a situation and finding the joy in them.
Cadell notes that caregivers may find positives in:
This doesn’t mean the negatives cease to exist, just that they’re given some balance, says Cadell. “However the positive aspects might look, they never should be understood to diminish the stress experienced by parents and families when a child is living with a life-threatening illness.”
But finding and remembering the positives can help parents handle hard times and turn stressful situations into opportunities to learn and grow.
Pitfalls will unavoidably happen. “Indeed,” Cadell says, “they may become the most meaningful moments.”
There’s no doubt caring for a child with muscle disease brings added stress, says Kate Nelson of Charlottesville, Va. Nelson’s 1-year-old daughter, Mary, has spinal muscular atrophy (SMA).
“You worry about things you never thought you’d think of, things you never even knew could happen or even existed,” Nelson says. “You become very overwhelmed and consumed with the illness, but you also try to make life as normal as you can.”
Some of Nelson’s worries include keeping Mary healthy during cold and flu season; wondering what her daughter’s future holds; making sure they have all the necessary equipment for Mary’s health needs and that insurance will cover the cost; finding activities Mary can participate in and toys she’s able to play with; and making sure her daughter’s getting the best possible care.
Nelson’s husband, Ryan, serves in the military, and the two live far from their families.
“Mary has a nurse who helps us 40 hours a month, and she’s a great relief,” Nelson says. “However, 40 hours a month is not that much and goes by very fast.”
Nelson says their busy schedules don’t permit time to attend counseling, but they participate in an online support group for parents of children with SMA, and ward off stress by trying “to just live life and have fun.”
They’ve learned as much as possible about SMA, prayed, accepted the support of friends and family, and spend a lot of time simply enjoying each other. The Nelsons also created a Web site (www.miracleformary.com) and blog for Mary, where they post about all the positive things in their daughter’s life.
“We take long walks and hikes with Mary,” Nelson says. “[It’s] something everyone enjoys, and being outside just relieves stress.”
Karen Ruhle of Fullerton, Calif., cares for her 10-year-old son, Karlson, who has spinal muscular atrophy (SMA). She says the sheer number of things a parent-caregiver has to handle can be “overwhelming” and have a major impact on every aspect of life.
To go anywhere, even just down the block to rent movies at the local Blockbuster, is “a major production.” The living room of Ruhle’s small apartment has been converted into Karlson’s bedroom, and is filled with the equipment he requires. A nurse attends Karlson from midnight to 10 a.m., Monday through Thursday, allowing Ruhle a few nights of uninterrupted sleep a week and time to run errands. Otherwise, Ruhle’s days are filled with parent and caregiver responsibilities.
Because of Karlson’s need for constant care, Ruhle is unable to work and has no money set aside for retirement. She worries about what she’ll do for transportation if her old Suburban dies. Going on a vacation “is not a reality anymore,” she says, and she often feels as though she has “no control” over her life.
Like many parent-caregivers, Ruhle also feels a certain sense of isolation.
She misses being able to go to church, and has lost a lot of her old friends who, she says, don’t feel comfortable sharing their problems, because of what she deals with on a daily basis and so they leave her “out of the loop.”
Ruhle has learned to recognize when the stress becomes too much. She’s participated in both online SMA message boards and MDA support groups — both of which she says are very helpful.
She admits to being “very consciously aware of taking time for myself,” and makes sure she regularly spends a few minutes doing things she enjoys and that help her to re-energize such as scrapbooking, looking at magazines while grocery shopping and exercising.
“When I start feeling really overwhelmed, and like I can’t do this, and there’s 5,001 things that I need to do, that’s usually a good indication that I need to take some time for myself.”
For caregiving information, or to connect with other caregivers, you may want to start with the following organizations:
Family Caregiver Alliance
National Alliance for Caregiving
National Family Caregivers Association
Share The Care
Strength For Caring