Nov. 20, 2000 -- Ten years ago, Margo Aparicio rescued her widowed mother, Genevieve, from near death because of a neglectful aide. Although she did it out of love, Aparicio never imagined the toll caregiving would take on her health and emotions.
Genevieve suffered not only from diabetes, incontinence, and dementia but also severe emotional problems: She needed to know that someone cared. So Aparicio relocated her mother from 150 miles away into an apartment above her own in San Francisco. For four years, Aparicio bathed her mother, fed her and cleaned up after her, while also working full time. Then depression descended -- without warning. "I would wake up realizing my day was going to be nonstop horrific with no relief in sight," says Aparicio, 45. Soon, Aparicio grew so depressed she became isolated and angry. "When I found myself screaming at my mother and blaming her, I realized I needed help."
Aparicio is not alone: A new survey from the National Family Caregivers Association shows that the number of persons who provided care for an elderly, disabled, or chronically ill friend or relative during the past year is more than twice as large as had been previously thought. Survey results indicate 26.6% of the adult population was involved in caregiving during the past 12 months. That translates to more than 54 million people.
Most caregivers are women, many of whom also juggle work and child care. Some do the occasional grocery shopping for their aging parents; others provide round-the-clock care. And although most of these women have taken on this role willingly, the unrelenting demands exact a high toll. Some 60% of caregivers say they experience depression, according to an earlier survey by the National Family Caregivers Association. The rate is even higher -- up to 76% -- among those caring for loved ones with dementia, such as Alzheimer's disease.
The price of such depression and burnout is high both for the caregivers and their aging parents. Caregivers suffer more stress-related illness than others their age, according to the association. And, ironically, burnout is the leading reason caregivers say they eventually put their loved ones in nursing homes.
But there is good news. Experts say family caregivers can often protect themselves from depression -- if they recognize the signs and seek support.
The greatest danger to health is in ignoring the warning signs of depression, says the National Mental Health Association. Their experts advise caregivers to watch for feelings of persistent sadness, anxiety, or fatigue. People suffering depression often feel guilty or worthless and have difficulty concentrating.
The key to prevention is realizing that you are not alone and you should not try to take on this responsibility alone. "This is the other mid-life crisis, but there's a lot of good help out there," says geriatric social worker Joan Booty. "There are community resources and support groups -- people have a huge ability to help one another."
Booty recommends caregivers call their county's Area Agency on Aging for information and referrals to local programs, such as Meals-On-Wheels, adult day care centers, in-home health aides and transportation assistance. Some programs will even help caregivers with home repairs or offer friendly visitors who stop by occasionally. Hospital discharge planners, doctors, and nurses can also refer caregivers to helpful programs. And, of course, caregivers should look for counseling and support groups for themselves, as well. If you don't take care of yourself, you can't take care of your aging parent or spouse.
Experts recommend the following six tips for warding off depression:
- Accept that you may need help from others, including family, friends, neighbors, community programs, medical societies, and religious and fraternal groups.
- Talk regularly with family, friends, or mental health professionals. Find a support group, locally or on the Internet, so you can share your feelings before they escalate into problems.
- Set limits. It is OK to say "no" to taking on more than you can handle -- physically and emotionally.
- Eat nutritiously, exercise regularly, and get enough sleep.
- Let go of unrealistic expectations and demands, including martyrdom.
- Keep a sense of humor.
Looking back, Aparicio realizes that she lost emotional balance in those first years she cared for her mother. "I was taking care of somebody else and their problems and had little time for my own," she says. "It was a vicious cycle: I was angry and under constant tension." Eventually, she became disabled with chronic back pain and had to stop working for a while.
But now, a decade later, both she and her mother are doing well. Genevieve recently turned 83. They employ home health care aides while Aparicio is at work, and Genevieve attends an adult day care center three times a week. Aparicio has returned to work and participates in an Internet support group with other caregivers who share the best and worst of stories.
"It took years to get to this point," Aparicio says ruefully. "It's so important to get outside support. The reward is seeing my mother live as fully as she is capable -- there's vibrancy, there's laughter. You can't give up; we should never underestimate the power of love to heal the body as well as the soul."
Beth Witrogen McLeod is the author of the Pulitzer Prize-nominated book Caregiving: The Spiritual Journey of Love, Loss, and Renewal.