Who Cares?

By Sarah Merrill

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Geri DeVore cared for her ailing 86-year-old husband at home for two years completely on her own before she decided she couldn't handle it any longer.

Although she is only fifty-seven years old, DeVore suffers from an extraordinary list of ailments, which she firmly believes are the result of ignoring her own body's decline while she cared for her husband. "I didn't have time to get on the merry-go-round of medical and lab test appointments. All attention and funds went to [my husband's] care," said DeVore.

Informal caregivers like DeVore are the foundation of this country's long-term care system. In fact, one in four U.S. households cares for a loved one at home. In total, approximately 25 million Americans provide in-home assistance for ailing family members or friends, according to the National Family Caregivers Association.

On top of the expense and the generally shaky reputation of nursing homes, most families ultimately choose in-home care out of an unquestioned sense of responsibility. Couples, in particular, make "agreements" without suspecting the emotional and physical burden that homecare can become in the long run for the care provider.

These caregivers seem to operate behind the scenes. They are not paid, they are rarely assisted in any meaningful way and they are sorely under-appreciated. As a result, their own health often deteriorates.

The Journal of American Medicine recently cited a study of 392 caregivers aged 66 to 96, and 427 non-caregivers of the same age range. At the close of the 4-year study, the mortality rate for caregivers was 63 percent higher than for non-caregivers.

According to California's Family Caregiver Alliance, a nonprofit organization that operates a statewide system of Caregiver Resource Centers, the prevailing physical ailments suffered by caregivers are back pain, high blood pressure and arthritis. Any condition is aggravated when the body is deprived of sleep, and many caregivers experience this to a drastic degree. Meanwhile, anger, anxiety and guilt join fatigue in tearing apart the body's immune system.

The Bay Area Psychiatric Testing Association (BAPTA) writes in its fall newsletter that 46 percent of caregivers show symptoms of clinical depression.

And psychologist Leonard Felder, Ph.D., explains in a July 17 article for CancerOnline, "most people react to the illness of a loved one as if it were a 50-yard dash, when in fact it's more like a marathon." Felder authored the book "When a Loved One is Ill: How to Take Better Care of Your Loved One, Your Family and Yourself."

Felder suggests that the caregiver must pay attention to some of the same basic needs as an athlete in training, including proper nutrition, regular exercise, enough rest and – most importantly – time off.

A California study conducted by the Family Caregiver Alliance revealed that procuring even a minimal amount of respite or in-home assistance provided a caregiver with relief. Ninety-four percent of the caregivers that got help felt a "significant" increase in their quality of life.

The problem is particularly acute for elders. According to July's Johns Hopkins Medical Letter, 25 percent of U.S. caregivers are 65 to 75 years old, while another 10 percent are over 75. Clinical social workers within the elder-care system are well aware that the older population finds it especially difficult to ask for help.

Joanne Holland, Executive Assistant at the San Francisco Area Agency of Aging, frequently receives phone calls from elderly caregivers who are looking for help but are reluctant to admit they need it. Holland explains that most caregivers find themselves in the role by default; they haven't planned for it and don't possess the appropriate skills. "I find that people often don't understand their own burden," Holland says. "It's such a misunderstood role."

Beverly Bigtree Murphy, who cared for her Alzheimer's-afflicted husband at home up until his death, explains, "Part of the problem with the older population is an over-inflated sense of privacy, not wanting to involve outsiders. They're the Depression-era population, where the attitude is to suck it up and handle it yourself."

The state of caregiving, although oft misunderstood, is slowly becoming a considerable public policy issue. Both Vice President Al Gore and Governor George W. Bush have responded to the public's cry for help, at least on the campaign trail. While Gore is proposing an annual $3,000 tax credit per caregiving household, Bush is looking at a 100 percent tax deduction for long-term care insurance premiums.

DeVore, for example, does not have any medical insurance. She had to stop working to care for her husband. In-home respite averages roughly $8 to $10 an hour, and Medicare pays for a very small portion of caregiving expenses. Often the numbers just don't add up.

Bigtree Murphy empathizes with DeVore and the countless others who find themselves without a source of funding, much less appreciation for their efforts. "If you have a choice between spending $60 on buying diapers to get your person through the month, or money to take yourself to the doctor, what are you gonna do?" she asks.

Now a Certified Rehabilitation Counselor, Bigtree Murphy also runs a nonprofit service to assist caregivers with the emotional burden of caring for a loved one. "We need something more than reinforcement of how difficult this caregiving experience is," writes Bigtree Murphy on her Web site, www.bigtreemurphy.com. "We already know that."

Bigtree Murphy feels that there are some people who are, by nature, more equipped to take on what's required of them for the long haul of caregiving. "The key factor is resiliency," she explains. "They're born with a certain affinity to rebound in the face of a crisis."

But she's also seen firsthand that for most caregivers the territory is mentally and physically overwhelming. As Bigtree Murphy explains it, in a spousal care situation, "they tend to become one person rather than two with independent needs."

Despite the challenges, in the best cases caregivers find the positive side of their situation. According to a 1994 member survey conducted by the National Family Caregiver Association (NFCA), seventy percent of respondents claim they found an "inner strength" they had not been aware of.

Bigtree Murphy, who has been down this road before, sees opportunities for self-affirmation in many caregiving situations. She hopes that through her web site and counseling she can help other caregivers see the positive aspects of their role.

As she describes her own experience, "My sense of myself increased in spite of it all, and maybe because of it all."

Sarah J. Merrill writes and lives in the San Francisco Bay Area. She can be reached at sarahmerrill@hotmail.com

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