Like many daughters of aging parents, Sandy Berman didn't recognize at first how far her mother and father had slipped. "You are so used to your parents being mentally competent that you don't realize what you're dealing with for a long time," says the Northridge, Calif., schoolteacher, 47. Her parents had been living with trash piling up in their home for almost a year when Berman finally convinced them to move closer. But the move only hastened their decline. Berman's father, 83, became forgetful and overdosed on his insulin. Her mother, 74, couldn't find her way from the bedroom to the bathroom. For months, Berman called every morning before going to work, and stopped by every afternoon. "I was going to make everything right, and better and perfect," she says. "But everything I did turned into mush."
While her mother was sweet and cooperative, Berman says, age turned her father mean. He called at all hours of the night and thought his daughter was stealing his money. He hired a detective and changed the locks on the door. Berman was haunted by anxiety attacks. Her job teaching third grade was her only refuge. "When the bell rang at the end of the day, my stomach started to clench," she says. She worried that she was neglecting her husband and son, and longed to be mothered herself again. She lost 30 pounds and had fantasies of running away: "San Fernando Valley schoolteacher disappears. No one knows why she didn't come home for dinner... "
In February 1989, Berman snapped. "I was nurturing at home, at school and at my parents', and getting nothing back," she says. She quit work and stopped seeing her parents for two months, all the while making decisions for them with the help of a geriatric counselor and a lawyer. Diagnosed with Alzheimer's disease and paranoia, her father went from one nursing facility to another, and died in May 1989. Berman found a board-and-care home for her mother and enrolled her in an adult day-care center to keep her mind stimulated. These days, Berman visits her twice a month, and calls once a week, though her mother doesn't seem to know if she has called or not. Berman has returned to work, but she still wonders--and always will--"Did I do the right thing?"
Anguish, frustration, devotion and love. A fierce tangle of emotions comes with parenting one's aged parents, and there isn't time to sort out the feelings, let alone make dinner, fold the laundry and get to work. More than 6 million elderly Americans need help with such basics as getting out of bed and going to the bathroom; millions more can't manage meals, money or transportation. Most are cared for by family members, at home, for free--and most families wouldn't have it any other way. There are myriad variations: "children" in their 60s looking after parents in their 80s spouses spending their golden years tending ailing mates; empty-nesters who had paid the last tuition check only to have an aged relative move in. Increasingly, men are shouldering such responsibilities. Still three fourths of those caring for the elderly are women, as it has always been. "Until the last couple of decades, women were home," explains Diane Piktialis of Work/Family Directions a Boston consulting firm. "Caregiving was their job."
But today they have other jobs as well. More than half the women who care for elderly relatives also work outside the home; nearly 40 percent are still raising children of their own. In fact, just when many women on the "Mommy Track" thought they could get back to their careers, some are finding themselves on an even longer "Daughter Track," with the* parents, or their husband's parents, growing frail. The average American woman will spend 17 years raising children and 18 years helping aged parents, according to a 1988 U.S. House of Representatives report. As the population ages and chronic, disabling conditions become more common, many more families will care for aged relatives. And because they delayed childbirth, more couples will find themselves "sandwiched" between child care and elder care. The oldest baby boomers are now in their mid-40s; their parents are mostly in their late 60s and early 70s, when disabilities tend to begin. In the next few years, predicts Dana Friedman of the Families and Work Institute, there will be a "groundswell of baby boomers experiencing these problems."
The strains on women, long evident in their personal lives, are now showing up in the workplace. In recent years, about 14 percent of caregivers to the elderly have switched from full- to part-time jobs and 12 percent have left the work force, according to the American Association of Retired Persons. Another 28 percent have considered quitting their jobs, other studies have found. That's just what's aboveboard. Many employees are afraid to let on that they spent that "sick day" taking Mom to the doctor, visiting nursing homes or applying for Medicare. Many women shop, cook and clean for their parents before work, after work and on lunch hours, stealing time to confer on the phone during the day. "Caring for a dependent adult has become, for many, a second full-time job," says Bernard M. Kilbourn, a former regional director of the U.S. Health and Human Services Department, now with a consulting group, Caregivers Guidance Systems, Inc.
To date, only about 3 percent of U.S. companies have policies that assist employees caring for the elderly. But Friedman predicts that such programs will become "the new, pioneering benefit of the 1990s." Businesses may have no choice. With the baby bust sharply reducing the number of young workers entering the job market, the U.S. Bureau of Labor Statistics warns that 60 percent of the growth in the labor force this decade will be women, virtually all aged 35 to 64. "This is the age group that's feeling the brunt of child-care responsibilities," says the BLS's Jesse Benjamin. "This is also the age group where elder care hits. It's a double whammy."
Congress is encouraging more family-friendly work policies--at least, it has tried. After five years of debate, lawmakers recently passed the Family and Medical Leave Act, requiring companies with more than 50 employees to grant them up to 12 weeks' unpaid leave to care for newborn or adopted children or relatives who are seriously ill. But President George Bush vetoed the bill, on the ground that government should not dictate corporate benefits.
American society is just waking up to the needs of an aging population. Even the words "elder care" and "caregiver" are new to the lexicon. Now, "there's a name and a description, and people are beginning to say, 'I fit into that'," says Louise Fradkin, cofounder of the support group Children of Aging Parents (CAPS), which has more than 100 chapters nationwide. For years, Fradkin says, caring for aged relatives was a hidden responsibility, one that most women assumed in silence. Even the major feminist groups have been slow to make it a cause. The National Organization for Women, for example, has been more concerned with abortion rights and advancement for women in the workplace than with family roles. "The problem today's midlife woman faces is that the rhetoric of the '70s and the realities of the '9Os are somewhat discordant," says Michael Creedon of the National Council on the Aging.
Only the Older Women's League (OWL), a Washington advocacy group, has made elder care a pressing issue. "No matter what else we talk about, our members always come back to caregiving--it has a big impact on all their other roles," says OWL executive director Joan Kuriansky. "We get letters from women who are taking care of their children, and their parents and possibly their parents. They are running from place to place. How do we expect them to do that and stay employed?"
That is the dilemma of the Daughter Track. While women have become a major force in the American workplace, their roles as caregivers remain entrenched in the expectations of society and individual families. "Often it's the woman's own sense of what's required of her," says Kuriansky. "Some of it is emotional. Some of it is economic--she may feel that she cannot contribute financially as much as a man does." And just as with child care, says CAPS's Fradkin, "women feel they have to be superwomen and do it all themselves."
Those who do ask for help at home are often frustrated. Many husbands are unable--or unwilling--to confront the emotional demands of elder care, even when the aged parents are their own. Two years ago, Pamela Resnick of Coral Springs, Fla., quit her job and moved her ailing father-inlaw in. While he was in and out of hospitals, she says, "he always wanted to see me--not even my husband. My husband doesn't deal very well with that type of scene." Joan Segal, 49, who quit her job to care for her mother, threatened to leave her husband unless he helped her mother more (page 53). Since then, Segal says, "he's so protective you'd think she was his own mother."
Grandchildren may also be swept into the changing family dynamics, and that adds to the guilt many women feel. Krissteen Davis, 43, a divorced accounting supervisor, has cut down her work hours since her 63-year-old mother, an Alzheimer's victim, came to live with her in Kansas City. Still, Davis's 13-year-old daughter must be home by 3:30 each day when her grandmother returns from an adult day-care center. "It's been hard on all of us," says Davis. Yet she says her mother "did for me when I was young. What's a couple of years out of my life?"
Time is often the most precious commodity for caregivers. "We were used to being George and Nancy with no kids at home," says Nancy Erbst, 38, of Minneapolis, whose mother-in-law, Hazel, lived with them for four years. "We used to take off on weekends and go camping. Our camping went down to one weekend in the summer. " Nancy, an executive secretary, was also working to earn a bachelor's degree at the time. She would get up at 4 a.m. to study, then tend to Hazel before leaving for work at 7:45. Her husband's two grown daughters, who lived nearby, also helped watch over their grandmother until last spring, when her deteriorating health forced her into a nursing home. "It's what a family does for each other," Nancy says. "It's something you want to do."
Not all families rally so gracefully. Deciding who should do the caring, and where, can stir up old sibling rivalries--and create new bitterness. For several years, Linda Hunt, a 54-year-old Kansas widow, has been the primary caregiver for her mother, now in a nearby nursing home. Her brother has been mostly uninvolved. "Sometimes when he calls, he doesn't ask about her, " she says. "It sets me hard against him. "
Responsibility for an elderly relative usually falls to the woman who is nearest. And sometimes no one is close. Roughly one third of caregivers manage care for their aged parents long distance, assessing changing needs over the phone and with reports from neighbors. Even though her mother and father lived in a residential community that provided housekeeping and meals, Saretta Berlin, 60, flew from Philadelphia to Ft. Lauderdale, Fla., every 10 days during much of 1989, when her parents were failing. "I would tell myself that if I just made it to the plane, I would be OK," she says. "Then perfect strangers would ask me how I was doing, and the floodgates would open." Even now, with her father dead and her mother in a retirement home, Berlin calls daily and visits every three weeks or so.
As Berlin found even when families put a parent in a nursing home, their responsibilities don't end. Many grown children rearrange their lives to visit as often as possible, and field lonely phone calls, night and day. Only about 10 percent of the disabled elderly are in such facilities--and the decision can haunt their families long afterward. Linda Hunt still feels guilty about putting her mother in a home three years ago--even though she was blind and Hunt was holding down two full-time jobs. "You think you should be able to do it all, but you can't," she says. "First you care for your children, then your mother. Pretty soon you just give your whole self to other people. "
Unlike child care, the responsibilities of elder care often come suddenly. A stroke or broken hip can mean the difference between a parent living independently and needing round-the-clock care. And while a child's needs can be planned for, an older person's requirements are often difficult to assess. Can Dad still manage in his own home? Will he need care for a few months--or many years? What's more, says Kilbourn, "in dealing with your parents, you do not have total control. Any decision . . . can be met with resistance if not total refusal to cooperate."
Reversing roles is one of the hardest aspects of caring for an aged parent. Krissteen Davis says her mother was "a really sharp lady--and one of my best friends" before Alzheimer's set in. Now, Davis says, "sometimes she just sits there like a little lump that used to be a person." Elderly people find it even harder to relinquish their old parental roles. Many are desperately afraid of burdening their busy children, yet desperately afraid of being alone.
Dot von Gerbig's mother and father moved into help her in 1969, when she was a -widow raising small children. Today, they still share her Honey Brook, Pa., home, along with her second husband and their 15-year old son. Von Gerbig's father, 92, is confined to a wheelchair; her mother, 84, is mentally confused, and both are legally blind. Before leaving for work at 7 a.m., von Gerbig arranges every aspect of their lives laying out clothes and organizing food in the refrigerator, so they can manage by themselves until she returns. "So far, we're making it," says von Gerbig, 52. But she lives in fear that something will go wrong and make her break her vow to keep them out of a nursing home. What troubles her even more, she says, is how terribly cruel the aging process is. "It makes me angry and it makes me fearful," she says. "It's an awful thing that a person does a good job all his life and this is his reward."
Most caregivers lament that they can't do more for their parents. Some of the toughest constraints are financial. Medicare does not cover the costs of long-term care, anywhere. Medicaid will pay for nursing homes, and home care in some states but only after a patient has depleted his assets nearly to the poverty level. Thus, many elderly people exhaust their life savings paying for care, and families dig deep into their own pockets to help them.
Many married women, particularly those in low-paying jobs, find it cheaper to quit work and care for aging relatives themselves than to hire home health care. Professional women are less inclined to quit and more apt to hire help. Many are torn between the parents they cherish and the work they love. Just when many have gotten a long-awaited promotion, they find their parents in need of care.
Charlotte Darrow decided she had to abandon her career as a social psychologist at Yale and move to Ann Arbor, Mich., when herwidowed mother fell ill in the late 1970s. She spent much of the next seven years cooking and chauffeuring for her. As a result,Darrowsays, "Ireallylosteverything--it was much too late to go back and recapture my career."Shede voted the next six years to studying how 15 other professional women combined work and caregiving. Her manuscript tells how they hired help and sacrificed weekends, lunches and vacations to spend time with their parents. Despite enormous stresses, all 15 continued their careers. "What these women showed is that people don't have to say, 'My God, this is it!' " says Darrow, 67. "It is possible to go on with your life."
What can employers do to make that easier? One of the most helpful things is to acknowledge the situation. "Corporate America needs to create an environment where employees can say, 'I have a problem with an elder who needs care'," says OWL president Lou Glasse. The Travelers Companies was one of the first to do so after a 1985 survey found that 28 percent of its workers over 30 cared for an aged parent, on an average of 10 hours a week, Travelers started a series of support programs. Today's leader may be The Stride Rite Corp., which this year opened the nation's first on-site intergenerational day-care center (page 52).
Other forward-looking firms have devised a wide range of programs and benefits. One of the most common, and least costly, is simply to educate employees about social services available in their communities (page 49). Some firms hold lunchtime seminars or "Caregiver Fairs," where local agencies describe their programs. Some publish detailed handbooks for employees, covering everything from how to select a nursing home to how to locate and pay for respite care. Growing numbers of companies also contract with private consulting firms that can help employees manage care even for relatives in distant cities. Work/Family Directions has developed programs for 21 national firms, linking their clients" employees with 175 agencies across the country. It also provides an 800 number for support and advice. In a few cities, government agencies provide similar services. Employees "don't want a way out of their caregiving responsibilities--they just want some help in coping," says Barbara Lepis, director of Partnership for Eldercare, a New York City program working with American Express, Philip Morris and J.P. Morgan.
The same Employee Assistance Programs (EAPs) that assist workers with drug and alcohol problems can often help with strains on the home front. In fact, EAP counselors frequently find that caregiving duties are at the root of employees' financial, marital or job-performance difficulties. Teresa Freeman, EAP manager at Travelers, says one employee was referred to her office because she was crying at work; another had been put on warning because she was unable to learn new skills. Both, it turned out, were caring for elderly parents and were cracking under the strain. Freeman formed a support group of caregiving employees. But other firms have found that support groups don't work well in situations where bosses and their subordinates may be reluctant to share intimate problems. Lepis says the chemistry works better when such sessions are called "caregiver exchanges" that deal with a specific topic, such as filling out a medical form. "Then we are able to get a cross-strata of the work force to commiserate together about this stupid form," she says.
Some firms are training supervisors to be compassionate about the demands workers face at home. Managers must also be reminded that the Mommy Track, and the Daughter Track, should not be slower roads to advancement. Otherwise, warned OWL in its 1989 Mother's Day report, "only orphans with no children could be placed on the fast track to professional success."
Growing numbers of firms are granting unpaid leaves to employees with family needs. IBM is perhaps the most generous. Full-time employees can take up to three years off, with benefits, and find their jobs waiting. "If we give our employees help in managing their personal lives, it helps us attract and retain the workers we need," says IBM spokesman Jim Smith. That has proved true at Aetna Life and Casualty as well. When it extended its family leave from a few weeks to as long as a year in 1988, the turnover rate among its female caregivers dropped from 22 to 13 percent. About 15 percent of U.S. companies offer flexible work hours. Some 35 percent of U.S. Sprint's 16,000 employees are on an "alternative" schedule--flextime, part time or job sharing, though most do so for child care or other reasons. Since January, Travelers has also granted every employee three "family-care days" a year that do not count as absences.
Alas, some elder-care programs are underutilized. In 1987, Remington Products offered to pay half the cost of respite care for workers' dependents during nonwork hours. Two years later, it dropped the program when fewer than six employees had signed up. Michael Creedon, who conceived the idea through his work at the neighboring University of Bridgeport (Conn.), speculates that Remington's highly ethnic work force may not have been comfortable with the idea of strangers in their home. Indeed, says OWL's Glasse, "many caregivers want to be so supportive of elders that they are reluctant to ask for help" and try to do it all on their own. Out of embarrassment, or their own individual work ethic, many employees are also reluctant to burden their bosses with family problems.
In the end, there is only so much the business world can do to help America's caregivers. Many liberal lawmakers and more than 100 special interest groups are pressing the federal government to do more. In March the U.S. Bipartisan Commission on Comprehensive Health Care proposed a giant new long-term care program that would guarantee home health care and three free months in a nursing home to all severely disabled Americans who need it regardless of age or income. But the price tag--an estimated $42 billion a year--virtually assures that no legislative action will be taken any time soon.
Even without creating a massive new entitlement program, the federal government could do more to help the elderly and those who care for them. Federal funding for the network of social-service programs serving the elderly is a paltry $710 million a year; services are sparse and fragmented in many areas. Most offices are open only 9 to 5, forcing caregivers to deal with them during work hours. OWL is pressing the Social Security Administration to rewrite rules that penalize workers who take time out to care for children or aged dependents. Upon retirement, a worker's monthly benefit is determined by averaging his or her earnings over the past 35 years. A zero is entered for any year not worked, no matter what the reason. Caregiving, says OWL executive director Kuriansky, "is a wonderful dimension of woman as nurturer--and it's something we don't want to undermine. But in playing that role, we want to make sure she is rewarded, not penalized."
Most women on the Daughter Track do not want to give up their family responsibilities--no matter what personal or professional sacrifices it entails. Many see their efforts as a chance to repay the time and care their parents gave them--a chance to say, again, I love you, before it's too late. What they would like is more understanding at work, more support from the men in their lives, more community services to help them--and a little applause from a world that often turns too fast to take time out for love.
In a survey of 7,000 federal workers, nearly half said they cared for dependent adults. Of those, three quarters had missed some work. Hours of Work Missed IN ONE YEAR Percentage No. of hours 9% 41-80 hrs 10% 25-40 hrs 23% 9-24 hrs 24% 1-8 hrs 27% 0 hrs 7% 80 hrs
For many daughters looking after elderly parents, adult day-care centers provide needed relief. Without that help, Charlas Rhodes of Kansas City, Mo., probably wouldn't be able to manage caring for her 71-year-old mother, Arena Whytus. Rhodes, 51, works for the Kansas City Housing Authority and attends the University of Missouri two nights a week. "I rarely get to bed before midnight," she says. Her mother has had a long string of medical problems, culminating in kidney disease and a mild stroke in 1987. When the doctor said Whytus would have to have live-in help or go to a nursing home, Rhodes, who lived in Chicago, knew she couldn't deal with the situation long distance. She quit her job and moved to Kansas City. At first, Rhodes stayed in her mother's apartment in a senior citizens' housing complex. Then she cashed in a life-insurance policy, bought her own house and moved her mother in; she found a job and the day-care center. Though it has been difficult to watch her mother decline and she now has virtually no social life, Rhodes says she has no regrets: "I've been so blessed."
Childless couples have only each other for support when they get old and most often, wives tak care of their husbands. For nearly a decade, Hildegarde Rebenack, 69, has watched her 78-year-old husband, Robert, deteriorate from Alzheimer's disease. Robert was a bank examiner, a man proud of rising above his eight-grade education. Now, he spends his days staring at a collection of stuffed animals in their Metairie, La., home. This wasn't the retirement they planned. "My family and his are scattered around, and we figured we'd do a fair amount of traveling," says Hildegarde, who worked for a coffee importer. They had expected to be financially secure, but Alzheimer's changed everything. Robert was diagnosed in 1982. By 1984, he could no longer left alone and, two years later. Hildegarde had to put him in a nursing home. His care cost about $22,000 a year but Robert's retirement benefits placed him just above the Medicaid cutoff. Last March, the latest price hike forced her to bring him home. "We had 37 good years together," says Hildegarde, her voice breaking. "But the last six years have been hell."
Some women choose to become full-time caregivers. Joan Segal, 49, is an only child. When her father died last year, she had to look after her 76-year-old mother, Rose, who has arthritis and can't walk. At first, Rose stayed in her own home in Los Angeles with a $300-a-week housekeeper. Joan, a receptionist, visited every night after work and sometimes stayed over. But, Joan says, "the help was too expensive and they didn't know how to run the house." There were emotional burdens, too. "I felt all alone and at times I didn't know who to run to," she says. Joan and her husband, John, sold their house and Rose's townhouse, and moved to a bigger place. For several months, housekeepers watched Rose while Joan worked. But Joan again grew dissatisfied with the way outsiders cared for her mother. For example, she says, they didn't know how to clean her up after a diarrhea attack." it was too much for Joan. My mother, she says, "is the most wonderful lady in the world." So Joan quit her job. "My father vowed that he would take care of her," Segal says. "As long as I am able, I will do same thing."
Although three quarters of caregivers are women, there are sons as well as daughters who look after aging parents. Luke Albee is an aide to Sen. Patrick Leahy of Vermont. He realized something was wrong with his mother, Constance, when he moved back to Vermont from Washington, D.C. to work on Leahy's 1986 re-election campaign. Constance would get in the shower with her clothes on or set the table for three when there were only two. The diagnosis was probable Alzheimer's disease. Luke, 30, lived with his mother for six months during the campaign, but her condition deteriorated rapidly and he could no longer care for her. Constance moved first to a senior citizens' complex and then to a nursing home. His sisters, who live in New York City, visited on weekends and his brother in Minneapolis took over their mother's financial affairs until she died in February at the age of 65. The Albees could afford to pay for Constance's care but the bill high--$25,000 a year. Says Luke: "It nearly drove us over the edge."
A wide variety of services is available to help elderly people at home. To learn what's offered in your community, start with the state or local aging office. Here's a summary of some programs:
Home Health Services: These are professional caregivers who help the homebound. A home health aide assists with such personal chores as bathing and dressing; a physical therapist can help patients overcome an illness or physical injury; a visiting nurse monitors a patient's condition and consults with the physician.
Adult Day Care: These programs provide recreation and some medical services. The cost--about $30 a day--is much lower than home health care.
Meals on Wheels: In many communities, hot meals are delivered at home, five days a week, to people who cannot cook.
Emergency Response Systems: Elderly people can wear a radio transmitter which they activate by pushing a button. A message is then sent to a local hospital or police station and an emergency contact.
Case Management Services: These geriatric care managers assess needs and coordinate community services. The National Association of Private Geriatric Care Managers (513-222-2621) will provide free referrals nationwide, as can hospital social workers and community agencies.