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Illustration: Sarah Wilkins |
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With Love and Without Guilt
Researcher Veronica Cárdenas has heard it time after time. "No, no, I am not stressed," the women say. But their bodies tell a different story. The levels of cortisol, a stress-related hormone found in saliva, "are often very high in caregivers," Cárdenas says. That's not surprising, since Cárdenas's study participants have one of the most stressful jobs around—they are caregivers for loved ones who can no longer care for themselves. Despite families being separated by distance and more women in the workforce, most elder care is still done by families, not institutions. And Hispanics are less likely to institutionalize a family member than Anglos. Around 30 percent of Hispanic households provide informal care for a friend or relative. The main caregiver in a Hispanic family is typically a 40-year-old woman who, more than half the time, is also caring for a child 18 or younger. Cárdenas studies Hispanic caregivers for the Latino Caregiver Assistance Program, a project of the Veteran's Administration Palo Alto Health Care System and Stanford University School of Medicine. The aim of the project, funded by the National Institute on Aging, is to find ways to help Hispanic caregivers deal with stress.
A challenge for the study is finding participants willing to admit they are overwhelmed by their situation, says Cárdenas. Hispanics are less likely to complain of caregiving stress, even when they are clearly experiencing it. "They have guilt that they are complaining." Many describe their caregiving job as a blessing-something they are happy to do for a loved one. But the 24-hour-a-day, seven-day-a-week job can wear out even the most loving, dedicated, and efficient caregivers. And when these overachievers inevitably begin to burn out, they view themselves as failures and feel guilty, says Cárdenas. Their guilt keeps them suffering in silence. Caregivers who constantly deny their own needs are at greater risk for psychological and physical problems. Self-neglecting spouses with unrelenting caregiving duties, die quicker than elders who are not caregivers, a 1999 study revealed. And between 46 and 59 percent of caregivers are clinically depressed, according to another study. But the caregiver is not the only one at risk. Burned-out caregivers are more likely to take out their frustration on their vulnerable loved ones. "Sometimes [the burnout] continues until the caregivers become so disabled themselves that they cannot go on," says Rita Hargrave, M.D., assistant professor of clinical psychiatry at the University of California at Davis, and keeper of the Ethnic Elders Care Network. Caregivers need help-to improve the quality of their own lives as well as the lives of their loved ones. And help is now available, in the form of respite care, stress-management workshops, and resource/referral programs. Respite care provides temporary caregiving services so that primary caregivers can take breaks from their duties. A break can be from several hours to several weeks, and may involve bringing a qualified caregiver into the home or taking the loved one to an adult day-care facility. Caregivers use the time for anything they want or need to do-work, visit their own doctor, have lunch with friends, see a movie, go away for the weekend with their spouse, or merely take a much-needed nap. The cost of respite care can range from free to expensive, depending on the type of respite, the programs available in a particular area, and the caregiver's income. If these caregivers had to be paid, it would cost more than $250 billion a year, according to the U.S. Administration on Aging. In recognition of the growing number of caregivers and their economic contribution-the longer an elder stays out of an institution, the less it costs government-Congress has allotted more funds in recent years to help caregivers cope. Last year Congress appropriated $141.5 million through the Administration on Aging to the National Family Caregiver Support Program, which then funnels that money to state programs. Through partnerships with area agencies on aging and local community-service providers, the money is used for respite care, counseling, support groups, caregiver-training, and informational sessions to alert caregivers to available services and help them access those services. Some of the federal money finds its way to the Family Caregiver Alliance (FCA), a San Francisco Bay-area nonprofit founded more than 25 years ago to help caregivers. FCA Family Consultant Lois Escobar finds that caregivers are often surprised when she shows up at their door and starts asking how they are doing and offers to help. "Our client is the family caregiver," not the ailing elder, Escobar says. "For a lot of them, it's an odd concept that they don't have to do all this themselves." FCA offers a financial respite-care grant to caregivers that they can use whenever they need it—all at once or a little at a time. Some caregivers are reluctant to take the help at first. "I encounter a lot of people in the Hispanic community who have a sense of wanting to do this all on their own," Escobar says. Then she explains that breaks from caregiving are important for both the caregiver and their loved one. Before long, the caregivers are looking forward to their time away. A few hours a week break "may not seem like a lot, but when people get that break.it is such a relief," Escobar says. Caregivers may have to look harder and ask more questions to find respite care for Spanish-speakers, she says, but it can be found. She suggests that caregivers ask respite-care organizations if they have Spanish-speaking workers and culturally sensitive activities for Hispanics. In Miami's Little Havana, specially trained, Spanish-speaking AmeriCorps volunteers visit Spanish-speaking seniors four hours a week, giving their caregivers much-needed breaks, says Christine Kucera of the Florida Department of Elder Affairs, which administers the program. "We are reaching people who would otherwise not be served because they don't know that the service is available (partly due to language barriers) or they just typically depend on family members to help." In Maryland, during the first year and a half of the Latino Elderly program (designed by the University of Maryland's Corps for Health and Independent Living), more than a hundred people received visits from volunteers. Many of the ailing elderly look forward to the volunteers' visits, says Miguel Lopez, executive director of Latino Elderly. For some patients with memory disorders, the visits can even spur moments of lucidity, he says. The volunteers, many of whom are new immigrants, also benefit. He tells of a patient, a retired teacher who is terminally ill, helping her volunteer improve his English so he will have a better chance of passing his citizenship test. It took some time to educate caregivers about the program, says Lopez. Organizers had to explain the advantages of respite care and make them feel confident that their loved one would be well cared for. Many had never thought of asking for caregiving help outside the family. "We are so used to taking care of our own people, without asking for help," says Lopez. "We keep it within our family circle." Doris Dailey cannot imagine what her life would be like without respite care. For one thing, she probably would not be able to keep her job. Her 85-year-old mother, Martina Castro, who suffers from dementia, visits an adult day-care center five days a week while Dailey works. "Oh, my God, It would be so hard" without the respite help, she says. "Caregiving has been probably the hardest thing for me." Dailey, 44, also qualifies for an extra eight hours a month of respite care through a government program. Sometimes she saves the time up and uses it all at once so she and her husband can have a day alone together. Dailey recommends all caregivers seek respite-care help. She learned that lesson through the Latino Caregiver Program. Teaching participants not to feel guilty about asking for help is a big part of the Latino Caregiver Program, says researcher Cárdenas. But before many caregivers get to the point where they are willing to ask for help, they have to be convinced that taking time to recharge doesn't mean they have abandoned their loved one or that they are bad caregivers. "We have got caregivers who are working 24-7, but they make statements like 'I am a terrible caregiver' because they decide to go out once a week with a girlfriend," Cárdenas says. "They feel so guilty." Through group sessions, participants hear other people tell them, 'I don't think you are a bad caregiver' and that their guilt isn't warranted," Cárdenas says. Caregivers are taught that they need to
do something pleasurable for themselves every day and it doesn't have to be big or expensive, she
says. "It can be something as simple as going out and taking a walk—anything
that brings you pleasure." Find out about organizations that can help those who provide care and those who need it. |
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