For Sharp, the change in her lifestyle was abrupt. Her 54-year-old husband had a stroke which left him confined to his bed and a wheelchair. He must be turned every three hours at night, given formula through a tube in his stomach, and lifted in and out of bed to use the toilet. Sharp carefully schedules even the most insignificant errands because she can’t leave him alone. The only assistance available costs her almost as much as her wages. For some years, Upson knew her 97-yearold mother, Jimmie Lee Feggns, had difficulties living alone. Once on a visit she found Feggns couldn’t get up to answer the door. Because in Willis, Texas, there ‘are no adequate home services, Upson moved her mother to Houston. Feggns hadn’t wanted to leave and would wander out of the house at night trying to return. Upson’s financial situation forced her to place her mother in a nursing home. This didn’t change Upson’s lifestyle. She goes each day to the nursing home to see that they are providing the necessary care. “They’ll give her a suppository, if she needs it, but I have to ask them to do it,” she says. She also checks to ensure her mother has eaten, turns her at night, and washes all her clothes. Sharp and Upson are “caregivers,” a term referring to those who, for no pay, care for disabled relatives or friends. Five million elderly who need help with daily THE TEXAS server Available at the following locations: Old World Bakery 814 W. 12th Street Austin The Common Market 1610 San Antonio Austin Las Manitas Cafe 211 Congress Austin Brazos Bookstore 2314 Bissonett Houston Paperbacks & Mas 1819 Blanco Road San Antonio Daily News & Tobacco 309-A Andrews Highway Midland tasks live outside of nursing homes. Almost 90 percent are cared for by relatives. And more than three-fourths of these relatives are women. According to Laurie Shields and Tish Sommers, co-founders of the San Franciscobased Older Women’s League, “Millions of women are giving billions of hours of unpaid care each year.” In order to draw attention to this issue, Shields and-Sommers interviewed over 400 women caring for. relatives and put their stories into a book, Women Take Care: The Consequences of Caregiving in Today’s Society \(Triad Publights the fact that women who provide care for an elderly or disabled relative often face stark choices to put that person in a nursing home, to face impoverishment, or both. The Federal government pays 50 percent of nursing home care. Most people think it pays through Medicare, the medical care program for people 65 or older and the disabled. It doesn’t. New Federal legislation for catastrophic illnesses also excludes longterm care. It is Medicaid, a welfare program, that pays these bills. Those in need obtain this help at great psychological and financial cost they must be, or become, poor. For Sharp that means she must care for her husband at home or spend down their joint assets until only $3400 remains in order to qualify for government help with nursing home costs. Sharp can keep her. home but not the means to live in it. Ironically, Upson can’t keep her mother at home. The government will only pay nursing home bills. These policies result from nursing home and insurance industry lobbying. Business needs differ from family needs. Insurance companies want a specific and clearly defined event, like entering a nursing home, to trigger payments. Providing that kind of care at home doesn’t qualify. Until the value of compassionate care is recognized, home care will continue to be financially and physically devastating for those who choose it. Shields spoke recently in Houston before individuals and groups working with the elderly and disabled to launch a national caregivers’ movement. “Caregiving,” she says, “is as profound a woman’s issue as equal pay for comparable work or violence against women. It is an act of love with consequences.” Shields knows this firsthand. She nursed her husband through his final illness and cared for Sommers when she had a fatal cancer relapse. In Houston, Shields provided not only an analysis of the problem but also specific reformS in longterm care policies. “The reforms we propose won’t provide a complete solution, but any one will be an enormous step forward. All can be achieved now,” she said. Shields said society must share responsi bility in caring for the chronically ill with social policies that put compassion, rather than business interests, first. Society assigns women the role of providing home and family needs but fails to give them the resources to do it. While Sharp and Upson want to look after their loved ones at home, other women don’t. Currently, many have no choice. “Is it realistic to ask individual women to make up for what government, men, and the market economy do not provide?” Shields asks. The most important long-term goal, in Shields’s view, is covering chronic care under Medicare. This reform is also the most difficult to achieve. Long-term care, even at home, costs money, and it is money that will not help America’s market economy. An important first step towards this goal is providing sufficient relief from the 24 hour-a-day attention women give. Some may need an aide in the home for a few hours a week; others may need a nursing home for as much as several weeks. Providing respite at reasonable cost allows the family to keep a relative at home. With affordable day care, Sharon Sharp, for example, could care for her husband without working three jobs. Secondly, Shields would change government policies on payment for long-term care to prevent impoverishing the healthy spouse. If Sharp could divide the family assets, she could save half for her own needs. She would still have to spend all the rest on her husband’s medical bills before he would be eligible for nursing home care, but she would have some money left to live on after he dies. It is vital now to make it harder for nursing homes to discriminate against Medicaid patients. Also, women like Sharp need to get a tax credit for this work to help offset the financial costs. And, finally, Shields wants to see an increase in the availability of private health insurance for long-term care. Although she said she is appalled that the United States and South Africa are the only developed countries without a national health insurance plan, she thinks private health insurance companies can meet these women’s needs. Shields cautions against arguing that these reforms will save money, although in some cases they will. Any reform of the current situation means additional costs. Doing something is more expensive than doing nothing. But, doing nothing exploits women, increases nursing home fees, destroys the health of “caregivers,” and irripoverishes dependent spouses. Why should we require a higher price for compassion than we do for self-interest? More information on the Older Women’s League or the National Caregivers’ movement can be obtained by writing: OWL, 4 Chelsea Place, Houston, Texas 77006. 12 MAY 20, 1988
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