When George Roberts' 70-year-old mother finished her therapy in New York after suffering a massive stroke last winter, he brought her down to Washington, hoping that some experimental treatment he had heard about would help restore her ability to function normally.
Roberts has placed his mother in a nursing home while she undergoes treatment. If everything goes as he hopes, he'll be able to take her home some time in the next several months and she can pick up the threads of her life as a widow in her house on Long Island.
If all does not go well, however, Roberts and his brother and sister will be faced with a hard choice. They will have to decide whether their mother will return to her home, move in with one of them or remain in a nursing home for the rest of her life.
"There's a decision that's going to have to be made among my brother, sister and me what to do," says Roberts. "It's not something any of us is looking forward to. We've all probably got different ideas about the long-term situation if indeed worse comes to worst."
For a son or daughter, regardless of age, such a decision is almost always traumatic and costly--emotionally if not financially. For all concerned--those who enter a home as well as their family and friends--a nursing home signifies the last stop, the final resting place, a concession that the active phase of life is over.
"I used to say that there were two deaths," says Dr. Robert N. Butler, director of the National Institute on Aging. "One was the death on admission to a nursing home and there was the later death, the body's death, the final death."
But Roberts is hardly alone in facing that dilemma. With an increasing proportion of American society living to old age, more and more people will have to make similar choices about the most humane and beneficial way men and women who can no longer care for themselves should spend their remaining years.
At the same time that the number of elderly is increasing, however, inflation and escalating costs are expected to bring new nursing home construction to a virtual standstill. As the competition for a small number of high priced beds becomes more intense, policy makers as well as ordinary citizens will face some difficult questions:
Who should be in a nursing home? How long should efforts be made to keep an older person out of a nursing home? What is the obligation that a child has to an aging parent? Where will the money come from to pay for the increased demand projected for nursing home care as the elderly populatiion grows?
There are no easy answers to these kinds of political and moral questions and at this point little debate. "Human nature being what it is," says Butler, "most events seem to appear after a crisis. There'll have to be a crunch first--probably a pretty significant one."
In economic terms, the crunch has almost arrived. The average cost of nursing home care in the Washington area now ranges from $17,000 to $36,000 a year, depending on the level of care. By 1985, the federal Health Care Finance Administration estimates, about $45 billion will be spent annually on nursing home care nationally. And by the end of the decade, the figure is expected to climb to $82 billion, which means that one-tenth of the nation's health care budget will be spent caring for less than 1 percent of the population.
An estimated 300,000 to 400,000 additional nursing home beds will be needed by the decade's end if demand continues to grow at the same rate.
The most obvious explanation for the increasing number of elderly and the demand for nursing homes is that people are living longer than they used to. At the turn of the century, the average life expectancy at birth in this country was 49 years. By 1978--the latest available data--average life expectancy was more than 73 years at birth.
The increase in life expectancy, combined with a decline in birth rates, has produced not only an absolute but a proportional growth in the country's elderly population. In 1900, only 4 percent of America's population was over 65. By 1950, that segment had doubled to 8 percent, and by 1990 it's expected to rise to 12 percent of the population.
In total numbers the increase is more dramatic. In 1900, fewer than 1 million persons were 75 or older, and only 100,000 were 85 or older. By 1980, nearly 9.5 million were 75 or older and 2.3 million were 85 or older. By 1990, an estimated 11.5 million people will be 75 or older, including about 2.5 million 85 or older.
Historically, those who lived to old age found security and comfort to be uncertain. In popular American mythology, the American family in days gone by was like the Waltons of television fame--three generations living together under one roof, in greater or lesser harmony. The reality, according to experts, was something else. Although the Walton situation may have existed in some instances, "it was not the modal pattern," according to W. Andrew Achenbaum, a Carnegie-Mellon University historian whose special interest is aging in America.
For the most part, Achenbaum says, the United States was settled by ethnic groups who believed in a nuclear, rather than an extended, family order. At no time, he says, was extended family living the norm in this country. By the 17th century in England, the nuclear family structure prevailed and "that structure was transplanted over with the rest of the cultural baggage," Achenbaum says. Much the same pattern held true for other ethnic groups who were the earliest immigrants to the New World, establishing the pattern for those who came later.
Typically, according to Achenbaum, an older man and woman lived independently as long as possible and then when they were no longer able to care for themselves, moved in with one of their children, or relied on assistance from the local community. Barring that, they went into some kind of an institution, the last resort being the poorhouse.
Although nursing homes, or old-age homes, have existed in this country for more than a century, it was not until the passage of Medicare and Medicaid in the mid-1960s that they became the significant presence they are today.
Almost two-thirds of the country's nursing home beds were built after Medicare and Medicaid became law. Medicaid now accounts for roughly one-half of all nursing home revenues, paying the bills of about 60 percent of the residents. Most of the rest pay their own bills, or their children pay for them.
Today, according to surveys by the federal government, the typical nursing home resident is a frail, white elderly woman. About 71 percent of residents are women, and 92 percent are white. The average age of nursing home residents in the United States is 78. The three most prevalent factors accounting for entry into a nursing home are dementia, incontinence and immobility. Approximately half of the country's nursing home residents are childless.
Roughly 85 percent of people in nursing homes are there because of poor physical health, according to a study done by the National Center for Health Statistics. Half of the persons in nursing homes suffer from mental deterioration. One-third or more of nursing home residents are dependent in one or more of six activities of daily life: dressing, eating, bathing, using the bathroom, walking and bowel and/or bladder control. Roughly one-quarter of all nursing home residents are dependent in all six activities.
Having a family decreases the likelihood of entering a nursing home, according to Clarissa Wittenberg, a psychiatric social worker at the National Institute on Aging. "If you have a family who can help you through a bad patch," Wittenberg said, "you're much more likely to stay out of a nursing home, or of staying out longer. If you break a hip, for example, and you don't have those people, your apartment is closed and it's the end of independence. It would take a super elderly person to recover from a broken hip, leave a nursing home, reopen an apartment and pick up her life."
The ability of many families to care for aging parents or relatives has been affected, however, by the thousands of women who have abandoned their traditional roles at home to enter the work force.
In 1900, only 20 percent of America's women worked. By 1950, almost 30 percent were working outside the home. And in 1981, more than 52 percent were working outside the home. In Roberts' case, for example, his wife, his sister and his brother's wife all work. Women who traditionally stayed home to care for children and the elderly now are working outside, leaving no one home to care for aging parents.
Typically, according to Daniel Foley, a statistician with the Institute of Aging, the elderly who have children and who enter nursing homes are there "because the next-of-kin were overwhelmed by taking care of them."
In most cases the problem is health, as in the case of Emma Jones, who lived with her son and daughter-in-law in their home for several years before her health began to deteriorate. According to her daughter-in-law, Helen,(names have been changed at her request), the arrangement was difficult at best and "miserable" at worst. Having her mother-in-law living with the family, Helen Jones said, complicated her relationship with her husband, an executive who had to travel a great deal.
Emma Jones could not be left alone in the family's suburban Maryland home on weekends, according to Helen Jones. A sister-in-law who lived nearby did not offer to have her mother stay with her except when she needed a baby sitter. Helen Jones's daughter fought with her grandmother. "My mother-in-law resented my attention to my daughter and they fought for my attention like two children would," Helen Jones said.
Tensions developed, although Helen Jones said she suffered in silence when her mother-in-law made comments to her that hurt her feelings. "I was very good to her," Helen Jones said. "The times she upset me, I never said anything. I was brought up to respect my elders and I do. I wouldn't do anything to hurt her."
The crisis for the family came when Emma Jones suffered a stroke. When she left the hospital, she entered a nursing home--temporarily, everyone thought--because her physical condition required that she live in a one-level house. "I felt that I had to do it," Helen Jones explained, "for her sake and for mine. She was becoming incontinent, and I just couldn't take care of her. I was working as a secretary ."
Despite the difficulties she had had when her mother-in-law lived in her home, Helen Jones said, when the elderly woman was placed in a nursing home, "I felt terrible . . . for a long time. I was very guilt-ridden, even though I certainly didn't do anything on my own. My husband and his two sisters ultimately made the decisions."
After seeing her mother-in-law in a nursing home and how much it depressed her husband, Helen Jones said she considered bringing her back into the house. Doing that, Helen Jones said, would have required transforming the dining area, immediately next to the living room, into a bedroom for her mother-in-law.
"But my husband said no," she recalled. "If his sisters, who had the facilities, weren't willing, then he felt she would have to go to a home. And it hurt him. It was hard for him to visit her. He couldn't bear to see her there. And he saw how she was deteriorating and couldn't speak--that hurt him more than anything else, because he knew what it meant for her. She had no one to talk to."
As this family's experience makes clear, it is not just the elderly who are affected by nursing homes. Even when placing a relative in the best nursing home available, family members may feel guilty--not so much because the homes are bleak, depressing places, since many are not, but because they know that placing a loved one in a nursing home means in many cases a radical constricting of that person's life.
Even under the best of circumstances, a nursing home is an institution with a regimen of its own, one that younger persons find relentless in its grim realism and suggestion of their own mortality.
In some cases, a person may enter a nursing home prematurely, fearing that when it actually becomes necessary there won't be any places available. Or children may place a parent in a home because they are unwilling to inconvenience themselves to accommodate someone no longer capable of being totally independent. In many cases, however, a nursing home represents a final resort, grasped with understandable reluctance.
"Architecturally," says Prof. William F. May of Georgetown University's Kennedy Institute of Ethics, "many nursing homes mock the word 'home.' What home contains 60 to 160 people in a cinder block impersonality of space, classifying inmates according to the level of services they require and declassifying them again for common room activities dominated by recreational interests of the lowest common denominator? These facilities are often little more than geriatric barracks. They are neither homes nor surrogates for homes."
A Positive Experience
In some cases, however, a nursing home is the only alternative available. But even for the nursing home patient who is not severely disabled or handicapped, the experience can be positive--a continuation of life rather than its end.
Sadye Monderer, an 89-year-old widow, lives at the Hebrew Home of Greater Washington, a nonprofit nursing home maintained by the metropolitan area's Jewish community.
Monderer, who lived with a widowed daughter for three years before moving into the Hebrew Home, gave three reasons for her decision. She wanted security, she said. She "didn't want to be a burden." And, "I wanted to be with people."
Unable to live alone because of failing eyesight, Monderer entered the Hebrew Home in 1971. At first, she said, she missed a sense of belonging to the community within the home. But as time went on, as she became more involved in the home's activities, she developed a sense of belonging.
"It made me feel that I was in a new world, but I had to learn the activities of the new world," she said. "I had to use my knowledge in the new world. Over here I broadened. I broadened in a different way. I became more conscious of being Jewish. I joined the Bible class here. I became broadened in that area. I can't see to read so I get the talking books. I listen to the radio. I would consider myself an old, modern personality. The day isn't long enough for me. I wish it were twice as long. I have a wonderful family. I have a daughter and a son. They are very supportive of me.
"Being with the children I ask, 'Am I in the way?' 'Am I saying something out of place?' It's my own desire not to be a burden. My children never gave me a feeling of being in the way.
"I think this is the best place for me personally, better than being with my children, better than living by myself. I have here everything I really need--guidance, volunteers. They are my readers. They are guides. And they are my friends when I just want to talk."
George Roberts has also found that the care and attention his mother has received at the privately owned Wisconsin Avenue Nursing Home in Northwest Washington has been good. Staff members at the nursing home "are very friendly and caring," he said, adding, "If you've been around sick people or old people, you'll probably find that the natural order of things is that you have to harden yourself to certain things or you won't make it. Thank God, the people I've met here haven't hardened themselves to the point where they don't care. They seem genuinely concerned."
Still, Roberts has trouble seeing his mother living in a nursing home for the rest of her life. "I would rather have my mother finish out--if it comes to that--finish out her days the way I think she would like to finish them out, rather than finishing them out being forced to go do some basket-weaving at 2 o'clock and some therapy at 3:30 and see a movie at 6," Roberts said. "It's not the kind of life she led and I don't think that's the kind of life she would like to lead."