More Staying Home : Care of Aged Takes Toll on Families

Susan Salas had been married only four months when her grandfather, 97-year-old Joseph Conrow, suffered a stroke. For the 16 tumultuous and exhausting months since then, she and her husband have labored to help Conrow realize his fondest wish--to remain at home.

In helping him avoid being institutionalized, however, she herself has paid an enormous price physically and emotionally. Her grandfather’s wife and son are dead, and every morning she drives to his Pasadena home to make him eggs and toast. Every evening, she returns to pour his glass of white wine and warm up dinner. In between, she cleans his house, does the shopping, watches his medication--and worries.

“I guess I thought he would either die or get well enough to take care of himself again,” 29-year-old Susan Salas confessed recently. Struggling to care for two households, she has started smoking again and has been plagued by headaches, rashes and sleeplessness.

Susan Salas has a lot of company.

In the modern era of fragmented families, mounting divorce rates and massive government social programs, it is widely assumed that elderly Americans who fall into difficulties are likely to be abandoned by their relatives and left to the uncertain mercies of nursing homes, Social Security, Medicare and charity.

The reality is quite different, according to specialists in the problems of the elderly and their families. Far from abandoning them, family members in steadily increasing numbers are making enormous personal sacrifices to enable their aging relatives to lead lives as nearly normal as possible.

“You hear people say all the time that families aren’t doing what they did in the good old days,” Elaine M. Brody, a Philadelphia-based researcher on aging, said. “And it just isn’t true.”

A Darker Side

If that is good news for American society as a whole, there is also a darker side: Millions of Americans who care for dependent elderly relatives find their own lives bent and twisted by the seemingly endless ordeal of providing that care. Working women struggle to meet the demands of what amounts to two jobs; spouses, children and friends make do with less while time, money and affection are devoted to aging dependents.

And as the years of cooking, bathing, cleaning up and deferring their own pleasures grind on, there comes a time when many who provide such care begin to wonder whether the price may be too high.

For every elderly person in a nursing home, at least four others with physical or mental problems that impair their ability to care for themselves survive in their local communities because of family members who pitch in as surrogate nurses, aides, housekeepers, gardeners and even accountants. That adds up to 5 million people age 65 and older who are living outside of institutions, thanks to the help they get with such basic tasks as cooking, bathing, dressing, eating and cleaning, according to the newest federal estimates.

The helpers--1.3 million spouses, 1.8 million children and 1.8 million other relatives--form an invisible network of care for the elderly, worth untold billions of dollars in costs that would otherwise be absorbed by taxpayers who already pay $12 billion a year in nursing home expenses.

In a recent poll of 739 of its 10,000 employees, Travelers Insurance Co. discovered that 28% cared for an aged relative, spending an average of 10 hours a week and doing so for an average of five years. Many workers find caring for parents equivalent to “taking on a second full-time job,” said company research director Glenn Ball.

The survey also highlighted one of the fundamental truths about the help at home. The responsibility is typically assumed by women: wives caring for husbands, daughters caring for parents, granddaughters nursing grandparents, sisters watching over sisters and brothers. Even when there is a son nearby, the daughter-in-law is more likely to provide the care. Travelers Insurance, for example, found that 71% of helpful relatives were women.

And their burden is becoming all the greater as women flood into jobs outside the home. Thus far, Brody said, working women have compensated for time on the job by hiring aides or nurses for the personal-care services they cannot provide during working hours.

In some cases, people who once would have been considered elderly themselves are forced to care for an even older generation. Increasingly, 60-year-olds find themselves responsible for parents in their 80s and 90s. The physical and mental strains are enormous.

The overarching goal of this struggle is to enable the elderly to conclude their lives in familiar surroundings rather than nursing homes. Joseph Conrow put it simply: “I’d rather live in my own house than anywhere else.”

Conrow is getting his way only because of the dedication of Susan and David Salas--his granddaughter and her new husband, who met in a Bible class.

“I feel responsible” for Conrow, Susan said in an initial interview. “I love him. I think it would just be awful if he couldn’t have as happy an end to his life as possible, as long as there’s something I can do.”

But the grueling, day-to-day responsibility has chipped away at her convictions, and her resolve seemed to soften in a later interview. “Are my fears of convalescent homes unfounded?” she wondered. “I’m thinking about it more and more, although he hasn’t changed his mind at all.”

Even before he suffered a stroke in late 1984, Conrow found remaining at home to be a growing challenge. He is legally blind even with the help of his wire-frame glasses, and he can barely hear even with two hearing aids at full power. As he walked outside a couple of years ago, a neighbor’s car slammed him into the gutter.

Took Several Falls

He has fallen several times in the last few years--potentially grave accidents. Each time he falls, Susan said, “he tucks himself under and goes into a ball,” a skill Conrow claims he gained playing football at the University of Pennsylvania in the early 1900s.

Susan once discovered him asleep in an easy chair in his study while a violet Oriental rug smoldered at his feet, ignited by a dropped cigar butt. The rug has other scorch marks, one the size of a softball.

After Conrow’s stroke, David Salas, a 27-year-old grocery store cashier, suggested that he and Susan move in with Conrow. They did so, but Susan had to cut back her hours as a technical assistant at the National Aeronautics and Space Administration’s Jet Propulsion Laboratory. Her first challenge: to clean the four-bedroom home, which had been invaded by rats.

Unexpected Problems

Cooking, cleaning, even helping Granddad bathe became regular duties. He also was incontinent, and she is still called upon occasionally to clean up after him. “I just hold my nose and sing to the Lord,” she said.

Conrow’s gradual recovery caused new, unexpected problems. He would try to prove that he could take care of himself by cooking breakfast, only to spill grease on the floor and leave the stove burning.

The Salases found it no way to start a marriage. “We ended up holding on to each other against a common enemy, the common enemy being the overwhelming chore of caring for Granddad,” Susan said. “It forced us together in one way, but we didn’t have the relaxing conversations, the fun times, the laughter.”

David found the situation increasingly awkward. “I wasn’t really resentful,” he said. “I could understand. He would say he would want to get to know me, but his hearing wouldn’t permit it.”

Caught in Tug of War

Last fall, the Salases moved to an apartment a few blocks away, but Susan still feels caught in a tug of war between her grandfather and her husband. “I don’t like being in the middle, and I feel responsibility both ways,” she said. “I think that gets to me more than a lot of things.”

For all of the tension around him, Conrow, now 98, still takes pleasure in puttering about his white, two-story home nestled among lemon trees and gardenia bushes in a quiet, residential neighborhood. On the rare occasions when he has a visitor, he recalls the years he roamed 11 Western states in a yellow-and-white Rambler station wagon as a publishing company’s advertising representative.

Life on the highway reinforced his taste for staying at home. “I know where the different rooms are, where the doors are,” he said. “I’d hate to have to go somewhere and learn the road map again.”

Requires Two White Canes

During the day, Conrow leans his stocky, 5-foot-7-inch frame on two white canes, inching his way through the rooms and hallways he knows by heart. Sometimes he rests on a chair by the radiator, closing his eyes, letting the hours march by.

When Susan leaves in the evening, the old man sits down in a brown vinyl seat, flicks a switch and glides up 14 steps to the second floor. He climbs slowly into bed, turns on the electric blanket and goes to sleep in the room he has slept in for 40 years.

Those who care for children are rewarded--and their burdens lightened--as their charges grow and mature. But many of those who care for the elderly find no comparable payoff. Round-the-clock care, which many of the frailest elderly require, can be debilitating.

“I’ve seen a lot of depression,” said Debra Cherry, a clinical psychologist in Los Angeles. “I’ve also seen suicide.”

Duke University researchers got startling results in 1983 and 1984 when they studied 510 persons who cared for elderly relatives with memory problems. The care-givers exhibited eight times more stress-related symptoms, such as sleep difficulties, fatigue and nervous stomachs, than a separate group of adults who were not providing care. What’s more, 34% had resorted to tranquilizers and other mind-altering drugs to ease their emotional pain--more than four times the level of such drug use in the general population.

“In many cases, the care-givers told us they were taking drugs that were actually prescribed for the patients,” said Linda George, an associate professor of psychiatry and sociology.

Desperation and Loneliness

The desperation and loneliness of providing unrelieved care are hard for even well-meaning friends to appreciate. Los Angeles’ Evelyn Schlender, 70, who has cared for her ailing parents for a decade, knows that firsthand.

Schlender recalled how her friends sometimes could not understand the difficulties she faced before her mother’s death: “You say, ‘I can’t lift her out of the tub anymore,’ and they say, ‘Well, bring someone in.’ So you bring someone in and your mother screams and cries, ‘I don’t want you to bring that person in.’ I don’t think I’ve been free for five nights since 1976.”

When the strain gets too great, some family helpers lash out against the ailing relative by withholding food and medication or even by resorting to violence.

“Most people who abuse the elderly are not nasty people,” said Linda Anderson, who has studied the problem as a registered nurse and associate professor at Humboldt State University in Arcata. “It’s just that they get totally overwhelmed with this day-to-day care.”

Retirees Lloyd and Shirley Shetler are sitting in the comfortable living room of their home in the San Gabriel Valley. Scenes of woodlands and seacoast decorate the walls, ironic reminders of the vacations they have been denied. On the plush gold rug are reminders of why: faintly visible wheelchair grooves, like tracks fading into sand.

“Unless you go through it, you cannot understand how hard it is on the people that are taking care of them,” Shetler said.

He is 72 years old himself, and when he and his wife retired a decade ago, they looked forward to rambling on the road in their motor home. But whenever they thought about leaving, someone in the family seemed to take ill. First there was the death of Shirley’s 97-year-old grandmother. Then an aunt got sick.

Lives Transformed

Soon after that, the Shetlers’ lives were transformed when Shirley’s parents, Virginia and Winfield Peterson, also got sick, her mother with Alzheimer’s disease, her father with a stroke.

“We’d sneak away for a few days, but we didn’t feel we could really get away,” said Lloyd Shetler, who left the Los Angeles City Fire Department in 1976.

Shirley, 60, a former magazine editor, recalled an evening a few years ago when her mother collapsed by the bathroom doorway, trapping the wheelchair-bound father inside the bathroom. After an unknown amount of time, a neighbor heard the former mechanical engineer’s cries and rescued the couple.

“She would have laid there all night on that cold tile floor and he would have sat there in his wheelchair if the neighbors hadn’t been at home,” Shirley Shetler recalled, holding back tears. “It was an awful situation. Most of us could have stepped over her, but of course he couldn’t do that. It was two handicapped people trying to get by, and that was one night it failed.”

Gave Up Social Life

Over the last decade, Shirley and Lloyd Shetler have gradually withdrawn from social life. They frequently miss church, where Shirley played in the handbell choir. Once she rushed to the hospital at 1 a.m. with chest pains, but doctors could find nothing wrong with her heart and instead blamed the pain on “nerves.”

All this may be changing. Shirley Shetler’s mother died last October at 82. Her father, 84, survives in his home of 33 years with the help of a housekeeper and frequent visits from his daughter and son-in-law, who live a mile away.

The Shetlers wonder if they might now have a little more freedom to take their 24-foot motor home on the highway. Maybe it’s not too late to enjoy the kind of retirement they had worked toward.

Still, the pain--emotional and physical--lingers. Said Shirley Shetler: “At night my heart gets to pounding and I get shaky and short of breath.” But she insisted that she never viewed caring for her parents as a burden: “I don’t think there’s anything I could do for my parents that would be too much. They’ve done so much for me.”

Many health-care professionals and social workers believe that devoted relatives risk becoming sick themselves if they get no time off from their caring duties. Among the options are hiring visiting aides and dropping off aging relatives in nursing homes for temporary stays. Some locations also have day-care centers where the elderly are looked after for several hours a day.

But such help isn’t always easy to find, particularly for those on tight budgets. Medicare, designed to help with specific illnesses, does not pay for simple custodial care, and very few private insurance firms offer any such benefits for the chronically ill. Many nursing homes have waiting lists. The Medicaid welfare programs in California and some other states offer some housekeeping and day-care benefits for the poor, although policies vary.

In Southern California, relatives seeking help may face costs of about $25 an hour for a visiting registered nurse or $9 an hour for a home health aide. And the relief is only temporary.

‘Still Need a Caretaker’

“You still need a caretaker (relative) at home who will teach and train and supervise,” said Marty Beeman, a social worker at Pasadena’s Huntington Memorial Hospital, which provides a variety of programs for the elderly. “And that same caretaker may have night duty and the weekend.”

In Long Beach, an unusual health maintenance organization known as the SCAN Health Plan provides up to $7,500 a year in “chronic care” benefits for the elderly. SCAN, for example, has helped pay for health aides that visit Evelyn Schlender’s father three times a week.

But the Long Beach program, which charges a $40 monthly premium and is free to the poor, is one of only four such federally approved arrangements with Medicare in the country. And future government support for the projects is uncertain. Indeed, recent federal policies suggest that more may be asked of family members in the future.

Pressure on Hospitals

Medicare is already pressuring hospitals to discharge elderly patients earlier than in the past. More and more, critics maintain, family members are faced with caring for elderly patients who are disoriented by their treatment and not fully recovered.

“The marked increase in discharges of sicker patients might just be the straw that breaks the backs of family care-givers without additional support for home health and community services,” declared Sen. John Heinz (R-Pa.), chairman of the Senate Special Committee on Aging. Whatever the future government role, family members will continue to provide the great bulk of the care. They consider it their duty.

“I just think, how can I make it better?” said Evelyn Schlender, whose 96-year-old father has had a stroke, hernia, prostate cancer and hardening of the arteries. “How can I get my dad up and walking so his health will stay better?”

Susan Salas takes a fatalistic attitude toward the burden her young marriage has had to bear. “We did too much,” she said, “but I really don’t know what else we could have done.”