Parents Beat Back Burnout

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.

One: Identify the causes

The stresses that lead to caregiver burnout can come from many sources, including:

• the physical, emotional and financial costs of caregiving;
• unrealistic expectations (either of your own capabilities or for your child's progress);
• a constant feeling of being in a heightened state of alert, in crisis mode, or "waiting for the other shoe to drop";
• guilt brought on by the need for outside help; and
• sadness or anger at circumstances beyond your control.

Two: Spot the symptoms

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.

Get rid of guilt

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.

Three: Work on a solution

Parents who force themselves to make time for self-nurturing tend to do better at avoiding burnout.

Self-nurturing can include:

• taking care of health care needs, including eating well, getting sufficient rest, exercising and visiting the doctor for illnesses and regular checkups;
• acquiring education, skills or training to more effectively care for your child;
• setting achievable goals and deciding how to spend time; and
• seeking emotional and creative outlets such as yoga, meditation, reading a book or magazine, journaling or singing.

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."

Ask and you shall receive

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.

Find the positives

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:

• their own strength;
• ascribing and recognizing meaning in daily caregiving tasks;
• gaining “a fuller appreciation of relationships with people and of life itself ”; or
• a deepened sense of spirituality or religion.

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.”

The Nelson Family 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). Mary Nelson “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.”