Ten years ago Margo Aparicio rescued her widowed mother, Genevieve, from a caregiver who wasn’t meeting her standards. Genevieve suffered not only from diabetes, incontinence and dementia, but also from severe emotional problems.
Aparicio relocated her from a community 150 miles away into an apartment above her own in San Francisco. For four years, Aparicio provided her mother with personal and medical care while also working full time. Although she did it with love, Aparicio never imagined the toll caregiving would take on her health and emotions. Depression descended without warning. “At first I was so isolated,” recalls Aparicio, 45. “I didn’t know any other caregivers. I didn’t have anyone to talk to about how to do this. I would wake up realizing my day was going to be nonstop horrific with no relief in sight. I started burning out and getting depressed.”
Growing ranks of caregivers
Aparicio is not alone: There are an estimated 22.4** million caregivers to the elderly, according to the National Family Caregivers Association. About three-fourths are women, many of whom also juggle work and child-care responsibilities. Tasks range from occasional grocery shopping for aging parents to round-the-clock care for a dying spouse. Although this role is taken on willingly, unrelenting demands can exact a toll.
According to a 1997 survey by the National Family Caregivers Association, 61 percent of caregivers reported feeling more depressed than before, with higher rates among those caring for loved ones with dementia, such as Alzheimer’s disease.
Not only do caregivers experience more stress-related illness than others, but caregiver’s burnout actually leads to institutionalizing a loved one more often, according to the association.
Heeding the warnings
“I was taking care of somebody else and their problems and had little time for my own,” says Aparicio, who also became disabled and stopped working for a while. “It was a vicious cycle. I was angry and under constant tension. When I found myself screaming at my mother and blaming her, I realized I needed help.”
The danger for family caregivers is in ignoring the warning signs of clinical depression: According to the National Mental Health Association, these include persistent sadness, anxiety, feelings of guilt and worthlessness, difficulty concentrating and exhaustion. If these symptoms persist longer than two weeks it’s time to get professional help, because they reflect more than a fleeting sadness or down-in-the-dumps phase.
One key to coping with the caregiving role, experts say, is realizing you are not alone. “This is the other midlife crisis, but there’s a lot of good help out there,” says Joan Booty, a geriatric social worker in Northern California. “There are community resources and support groups — people have a huge ability to help one another.”
The place to start is your own county’s Area Agency on Aging for information about local nutrition sites, adult day care, in-home health and personal care, transportation, friendly visitors, respite care, assistance devices, home repairs, counseling and support groups. You can also turn to physicians and nurses, hospital discharge planners, geriatric care managers and pharmacists.
Experts recommend the following tips for caregivers:
- Accept that you may need help from others.
- Talk regularly with family, friends or mental health professionals. Find a support group, locally and/or online, and share your feelings so they don’t 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. Don’t be a martyr.
- Keep a sense of humor.
In caring better for themselves, most caregivers eventually find emotional balance. A decade later, Margo Aparicio and Genevieve, now 82, are doing well. They use home health care aides and adult day care. Aparicio has returned to work and participates in an online support group of empathetic others who share the best and worst of caregiving stories.
“It took years to get to this point,” she says. “It’s 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.”
**22.4 million at the time this article was written. However, today, May 2001 there are over 54 million family caregivers as per the National Family Caregiver’s Association’s last survey.
© 2000 Beth Witrogen McLeod.