Caregiver Burnout

November 2008

by Molly M. Ginty

How to bandage wounds. How to move an invalid from the wheelchair to the bed. How to dress someone who’s unable to move the entire right side of her body.

That’s just some of what Liz de Nesnera has learned since her mother suffered a massive stroke and de Nesnera, who works as a voiceover artist in Compton Lakes, New Jersey, became her caregiver 14 years ago.

“My biggest lesson has been learning to avoid burnout,” says de Nesnera. “When you’re a caregiver, you need to remember to nurture yourself or you’ll get physically and emotionally exhausted.”

Some 50 million Americans care for ailing loved ones, and 60 percent of these helpers are women. Though they offer $306 billion in services each year, their reward is often little more than skyrocketing stress and a higher risk of getting sick themselves. During November (National Family Caregivers Month), health advocates are working to spread the message that only by looking after yourself can you effectively care for someone else.

Strained muscles from hauling and lifting. Worry over mounting medical costs. The disorientation of having parent-child roles reversed. Resentment toward family members who aren’t doing their part. Isolation as you’re forced to take time away from friends. Frustration at your own shortcomings. Anger at the loved ones who are consuming your life, combined with heartbreak because they are slipping away.

These are among the many challenges that caregivers face—and they often grow more pressing as health conditions worsen.

Consider de Nesnera’s case. A year after her mother’s stroke, de Nesnera also became her father’s caregiver, nursing him from the time he developed Alzheimer’s disease at age 76 until his death at age 83. De Nesnera cleaned, cooked, and did laundry for both parents. She sold their New York apartment, moved them to their vacation house upstate, paid their bills, and shuttled them to doctors’ appointments. As their health declined, she eventually moved them both into the New Jersey condo she shared with her husband.

“I was there when my father left the teakettle boiling so long it melted onto the stovetop,” says de Nesnera. “I was there when my mother fell out of bed and broke her shoulder. I helped them—or found help—all while juggling a full-time job.”

The backache de Nesnera developed and the crying fit she had when she realized she was so overwhelmed that she took her mother to adult daycare for the first time are typical of overtaxed caregivers. The federal Department of Health and Human Services reports caregivers like de Nesnera are twice as likely as non-caregivers to have health problems including depression, anxiety, cardiovascular disease, and alcohol or drug addiction.

Left unchecked, these problems can grow deadly. Stress can shave up to 10 years off a caregiver’s life, report University of California researchers. Elderly spousal caregivers have a 63 percent higher mortality rate than their noncaregiving peers, notes the Journal of the American Medical Association.

How can a caregiver overcome these odds and take adequate care of herself?

“Admitting you’ve crossed the line from dutiful friend or family member to caregiver is the first step,” says Deborah Halpern of the National Family Caregivers Association. “That can be difficult because it means accepting that your loved one really is frail or disabled. But only when you make this recognition will you ask for the help that you need.”

Help can come from family and friends—even if it means having someone come over for a half hour while you take a walk or an hour while you go grocery shopping. It can come from other caregivers via on-line or community support groups.

It can come from doctors, nurses, books, and Web sites that can educate you. “You won’t feel so helpless—or so hopeless—when you know everything you can about your loved one’s condition,” says Lauren Agoratus of Hamilton, New Jersey, whose 16-year-old daughter has autism and kidney problems requiring full-time care.

Assistance can also come from your employer. Research shows that 62 percent of caregivers have to make adjustments to their work lives. Communicate your needs to arrive late or work from home—and find out whether your company offers caregiver benefits such as disability coverage, referral services, or subsidies for home health aides.

Ask for help, and it may come knocking. In Chicago, so many caregivers approached Grace Episcopal Church clergy for help that they started a support group. In Bergen County, New Jersey, community needs prompted the creation of an Alzheimer’s hotline. In St. Petersburg, Florida, neighbors raised $3,500 to help buy a wheelchair accessible van for the parents of a young man partially paralyzed in a motorcycle accident.

The message behind these outpourings? You’re not alone. One in four households provides care for an elderly relative, and caregiving needs are projected to triple by 2050 because people over age 85 are the fastest-growing segment of the population.

Above all, say experts, address your own health needs. Eat well, sleep well, and exercise. Get checkups and massages, and get out of the house to watch a movie with friends. “Caregivers tend to neglect their own wellbeing,” says Dr. Peter Reed of the Alzheimer’s Association. “But if you want to be a better caregiver, you need to take care of yourself.”

Molly M. Ginty lives in New York. Her work has appeared in Ms., Marie Claire, Redbook, and Women’s eNews.

For more information:
National Family Caregivers Association
www.nfcacares.org

Family Caregiver Alliance
www.caregiver.org

National Family Caregiver Support Program
www.aoa.gov/prof/aoaprog/caregiver/caregiver.asp

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