Mildred is rising.
A vacant-eyed woman thin as a straw, Mildred is getting out of the high-backed yellow chair in which she has spent the morning. The sight of Mildred rising invariably causes consternation at Bethel New Life Adult Day Care, where she is a client. Once Mildred weighed more than 200 pounds, but now she suffers from Parkinson’s disease and senile dementia, and her girth is gone. But her old inclinations are not: when she begins to prowl, she goes in search of food. Her faculties are so eroded, however, that she can no longer tell the edible from the inedible.
“Mildred’ll eat anything,” says Rayfield Johnson, another day-care client. “The minute she sees something to eat, she don’t care what it is, her fingers are in it.”
Johnson, who is 83, has been watching Mildred out of the corner of his eye for several minutes. After several feints, she begins to stand up. The moment she pushes off from the arms of her chair, Johnson bolts up himself from his. “Now sit down, Mildred, sit, sit, sit,” he shouts. Johnson’s explosion jolts Mildred, though his voice and tone of authority must be familiar. Mildred looks at Johnson, looks again, blinks, and then, head bowed, she sits down.
An expression of satisfaction crosses Johnson’s face. He has served a function today; he has prevented Mildred from consuming a piece of plastic or sliver of wood.
Mildred and her friend Johnson are among some 70 day-care clients at Bethel New Life, a nonprofit west-side agency with several social-service programs. The average age of Bethel clients is 76. Every client has mental or physical problems or both–in fact all but a handful are befuddled, from depression, senility, or Alzheimer’s.
Yet they carry on. From roughly 9 AM to 2:30 PM, the seniors are tucked away in a small suite that’s part of a Bethel building in Austin. “This is their clubhouse,” says day-care program manager Patricia Bailey. Overseen by Bailey, a nurse, and four other staffers, the Bethel clients do arts and crafts, discuss current events, take some light exercise, have lunch, go on field trips–and stop one another from eating foreign substances.
Rayfield Johnson, a good-looking man with a small potbelly, is by turns jocular and crusty. Every Tuesday and Thursday morning, a Bethel bus ferries him over to the day-care center. He sidles inside on a cane at about 9:30, full of piss and vinegar. Sometimes he carries several boxes of doughnuts, which he shares with his compatriots. Quickly he joins Mildred and some other women in a sparsely populated side room. Mildred, of course, has lost most of her marbles, as has a sunken-faced lady named Irma, who suffers from Alzheimer’s and can usually be found clutching a rag doll to her bosom.
That the ladies are out of it doesn’t matter to Johnson. “I like women,” he says matter-of-factly, “and I’m going to like ’em until the day I die. I’m their play puppy. I get a kick out of ’em.”
Johnson loves to gab and tease. Recently a 97-year-old woman friend was filling Johnson in on her boyfriend. “Mama,” Johnson inquired, “what you gonna do with a boyfriend?” The woman eyeballed him squarely. “What you think I’m going to do,” she snapped back. Johnson often inquires about Irma’s husband, and she usually responds with a spate of unintelligible blather. One day when Johnson asked about Irma’s better half, she hit him over the head with her doll.
Johnson is used to being attacked. A month or so ago, a woman he was talking to spat in his face. “Well, I slapped her right down,” he says. “I expected trouble from the woman’s son, but I haven’t gotten it yet.”
Of the activities orchestrated by the Bethel staff, Johnson gets a kick out of singing religious songs, and he takes pride in making pillows, yarn-and-plastic baskets, and boxes crafted from Popsicle sticks.
Johnson scorns the exercise, however. “They got bicycle pedaling, walking, pulling up, and all that kind of stuff,” he says. “But my doctor told me not to strain too much, so I don’t bother with it.” He’s also lukewarm about the lunches, often meat loaf or goulash catered by Saint Elizabeth’s Hospital. As insurance against goulash, he always brings in a homemade fish or pork-chop sandwich and a can of pop in a multicolored cloth satchel. “If the women find out what I got, often they eat it up,” he whispers. “If they don’t get at it–and I eat the regular lunch–I bring my sack lunch back home, warm it up, and have it for supper.”
But supper means the evening, and Johnson much prefers his days at Bethel: “This gives me a kick, from the time I get on the bus in the morning. When I get to the center, everybody yells, ‘Hey, Mr. Johnson, Mr. Johnson,’ and they hug and kiss me. I may be 83 years old but they treat me like I’m 16. Between you and me, I have that kind of influence on women. But then I like all the people. Everybody treats me like a human being, and I do the same by them. This way, too, I don’t have to be at home all by myself.”
Or in a nursing home. “I tell you this,” says Johnson, “when the day comes that I ever have to go to a nursing home, I hope God comes and takes me out of this world. Nursing homes are no place for a senior citizen. They treat people like dogs there. We sometimes go visit folks who used to be here with us, after they have gone off to different homes. You see people lying there wet, messed up all day long. It’s disgusting.”
Day care, however, is another matter. “Shit,” Johnson says, “if this wasn’t doing me good, why would I be coming?”
So many others share Johnson’s opinion about adult day care that the service, introduced in this country in the early 1970s, is becoming more and more widespread. For many reasons, day care makes sense for that small portion of America’s 30 million seniors who require some help coping yet are not totally incapacitated, a group pegged at about 1.5 million. Day care is cheaper than the alternatives–nursing homes or hired help at seniors’ homes–and unlike home care it provides the elderly with opportunities for camaraderie. Some people question, however, whether claims of improved functioning as a result of day care are justified.
Moreover, day care enables seniors to remain in the community. Says Elsie Pinkston, a University of Chicago professor writing a book on day care, “This way the elderly can stay around all that they’ve collected and known in their lives and can be close to those who love and care for them the most. Who ever said institutions were good for people?” Day care also offers the natural care givers of the old, normally a spouse or female relative, relief from a duty that often has become an ordeal.
As the baby-boom generation reaches maturity, many authorities predict that the demand for adult day care will mount even higher, since aging boomer children, many busy in their careers, will be seeking options for the care of their even older parents.
Until recently, day care has been largely the province of nonprofit institutions, but now independent businessmen are entering the field. One major corporation has even established elder care on its own premises as a way of hanging on to its employees–much as corporations presently furnish child care to satisfy young parents. While many states, including Illinois, are subsidizing adult day care with a patchwork of funding, the U.S. Congress is now looking at the idea of making day care part of medicare entitlements.
“What the issue of child day care was in the 70s, adult day care will be in the 90s,” predicts Larry Levin, operator of a private center in Skokie. “You watch what I say.”
Lunchtime at Bethel New Life day care: In come trays of spaghetti and meatballs, beans and chocolate pudding. Irma is ensconced in her usual chair, lovingly cradling her doll. When the ravenous Mildred receives her tray, she stops toying with her cuticle and turns her attention to the food. Johnson is relieved: now that she has her lunch before her, he can stop watching so vigilantly.
Johnson sits back in his chair, deciding whether to eat the spaghetti or opt for the steak sandwich that’s in his satchel. He is wearing a Hawaiian shirt over a red undershirt, with blue wash pants hitched up by maroon suspenders. You could go blind just looking at Johnson, but that’s immaterial to his luncheon companion, Esther Cordero, a talkative 69-year-old native of Puerto Rico whose eyesight is so poor she sees objects only as a blur.
“Think I’ll eat this spaghetti,” Johnson says, sprinkling on some pepper. He turns his attention to Cordero. “You got some brown beans over there that you ought to give a try,” he advises her. Then he passes Cordero a spare meatball and gives Mildred a piece of white bread and his portion of pudding.
As they dine, Johnson and Cordero touch on many subjects. They bemoan the slaughter in Tiananmen Square and the political hole that Harold Washington’s death has left. Neither quite knows what significance to attach to Ferdinand Marcos’s impending death. Cordero tells Johnson it’s easy to learn touch typing, even at his age, but he doubts it. The conversation moves on to computers and computer mistakes; Johnson contends there are many, especially by the greedy gas company. That leads to a discourse on science.
“Science ain’t nothin’,” Johnson argues. “Science ain’t nothin’ but sin. Science is politics. Sin and politics–that’s why we’ve had so many bad wars.”
Not wanting to dispute such a generalization, Cordero changes the subject. “Oh, my God, now physics is sure something,” she says.
Which reminds Johnson of lie detectors. Once, he remembers, he was arrested in Mobile, Alamaba, as a suspect in the murder of a white man and the rape of his wife. “The woman’s brother-in-law was supposed to have done all the devilment, but they wanted a black boy in jail,” Johnson says. He flunked a polygraph test he took while in jail (which has made him question the device to this day), but ultimately Johnson was cleared of guilt.
Johnson was born in a small Alabama town near the Florida border. His mother was 13 at his birth–so young, he says, “that she was my playmate when we were kids coming up.” Mother and son lived on a 40-acre farm run by Johnson’s grandmother. Johnson only cleared the fifth grade. “It’s my wits that have brought me to where I am,” he says. “Which is pretty far–I got a college education up in my head.”
As a young man he worked in the sawmills, for a railroad, and on a Mississippi riverboat. There were also, Johnson hints, some run-ins with the law. Beginning in 1950 he was employed at the now-defunct Brooklyn Air Force Base in Mobile, but he was let go in 1958. Seeking higher wages, he came north to Chicago in hopes of finding work with the Air Force at Navy Pier, but Johnson says that his advanced age eliminated him from consideration. He survived here as a catch-as-catch-can laborer, taking jobs in a laundromat and hiring out to do housework.
He married and divorced three times and has had 14 children, 10 of whom are still living; the oldest is 64, the youngest is 20.
Johnson’s physical decline started nine years ago, when he had a prostate operation that he was told in advance would rob him of his sex life. “Doc,” he informed his physician before going under the knife, “this should lengthen my life. I’ve already had my portion of women. I’ve had 14 kids, and God knows I don’t need more. Let’s go for it.” (The operation didn’t slow Johnson up right away; he claims he was still making love to a 22-year-old woman a couple of years afterward.)
Since the prostate operation, Johnson has had surgery on his stomach, bladder, and eyes (for cataracts). Two years ago, after an apparent heart attack, he swore off drinking and gambling and returned to the Baptist church. Today he downs a number of pills every day for arthritis, a weakened heart, and other maladies. “My teeth been out since 1974,” he says. “I don’t like false teeth, and I don’t want ’em. I can eat fine with my natural gums. Hell, I can bite the shit out of you.”
Johnson gets by on $388 a month in social security and disability payments, plus Medicaid and food stamps. When old age first set in, he went to live with a daughter in Gary for a year or two, but he battled so terribly with one grandson that he swore off living with family members and has been on his own ever since. Home is now a $43-a-month studio apartment in a housing project for the elderly near the South Water Market. Johnson’s flat has a twin bed with a brass headboard, a roll-away cot for guests, a color photo of Harold Washington, and a small black-and-white television on a stand, which he watches constantly when he’s alone.
Rarely does he fraternize with his neighbors: “Ain’t but ten people in this whole building that I know by their natural names. I don’t visit nobody, and nobody visits me; you won’t catch me knocking on anyone’s door. The big portion of people here are liars and gossips.”
Several of Johnson’s offspring live in the Chicago area, among them the Gary daughter; most phone him regularly but seldom visit. His most devoted child is Dwight, 26, an unmarried west-sider. “He’s about 25 percent retarded,” says Johnson, “but he’s got sense enough to keep a cheap job. He loves his daddy, though. The Father’s Day card he sent, it almost made me cry.” Dwight stops by about once a week.
Four years ago, Johnson went to Bethel New Life for help in tidying up his flat, and Wanda Lewis, Bethel’s vice president for senior services, recommended not only that he get a housekeeper but that he consider attending adult day care. Johnson agreed to both services, which Bethel provides and is compensated for by the Illinois Department on Aging. For Johnson’s day care, Bethel is reimbursed $20.50 a day.
Johnson plays such a large social role at day care–and loves coming so much–that when Bethel officials were informed that Dr. Louis Sullivan, U.S. Secretary of Health and Human Services, was scheduled to visit, Johnson was the obvious choice to greet him. On June 6 of this year, the appointed date, “I got dressed up sharp as a rat’s dick,” says Johnson.
At mid-morning, after addressing civic leaders at a breakfast at the Amoco Building downtown, Sullivan swung out to see some west-side programs, among them Bethel’s day care. When the secretary entered the day-care suite, Johnson was standing there with a gift, a pot holder he had made. (Quipped Channel Five reporter Barry Kaufman: “Is that for when things get too hot for you in Washington?”) Johnson praised the day-care program at Bethel and had some words of advice for Sullivan. “You-all people up there in Washington, with all that money, you should be helping programs like this,” he told the secretary. “Bush should throw some money at us.”
Sullivan listened politely. “Mr. Johnson,” he said when Johnson was done, “I got to give it to you, you’re a square man.”
Adult day care follows the pattern set in England during the 1950s and ’60s: hospitals cared for the deranged elderly from morning until late afternoon, then returned the patients home. In 1970, British gerontologist Dr. Lionel Cosin imported the concept of the “psychiatric day hospital” to Cherry State Hospital in Goldsboro, North Carolina. The idea soon spread elsewhere, but as day-care centers developed, the requirement that the participants be psychologically troubled vanished: The usual minor physical and mental ailments were all that was needed for seniors to qualify.
Among the first to be organized after Cherry State was Bright Side Adult Day Care Center in Rockford, Illinois, the outgrowth of a Lutheran church there. “We were disturbed that people in Rockford were being prematurely institutionalized,” reports Suzanne Crandall, the longtime center director, who envisioned a social center for her hometown’s oldsters. The greatest difficulty for her was overcoming the stigma attached to families that didn’t care for their own elderly, at least until they reached the nursing-home stage. In order to get the day-care center going, a desperate Crandall had to borrow some nursing-home residents who could manage on their own during the daylight hours.
The disgrace of “farming out” the elderly has lessened with time, and the number of day-care centers nationwide has grown from a mere dozen in 1974 to some 2,000 today. Illinois has about 100. Most centers are associated with social-service agencies, such as the one at Bethel New Life, and a few with hospitals.
The centers usually spring from the same mold, according to Kendon J. Conrad, a Northwestern University professor who has studied such centers for the American Association of Retired Persons. Clients usually arrive sometime after 7AM, brought in by bus or a relative. “They’ll sit around, have coffee, and talk until the formal programming begins,” says Conrad. Nine o’clock usually means the morning regimen of exercise, singing, crafts, and games. A staff nurse dispenses the necessary medications. There is a snack and, later, a hot lunch.
Afterward comes a rest period, with a bed or two occasionally available for those who want to stretch out. The afternoon is often characterized by discussions and an out-loud reading of the newspaper, all coming under the rubric of “reality orientation”–plugging the seniors into the here and now. The clients leave at 3 or 4 PM. Those who need an extended day may wait around longer, chatting and watching TV until their care givers can come for them.
Many centers have support groups for their clients’ care givers in the evening. Centers can have different specializations: some are more social, others are rehabilitative. The tendency is to isolate Alzheimer’s patients when that’s feasible. The House of Welcome in Winnetka is a day-care center devoted exclusively to victims of Alzheimer’s, who often have similar problems and therefore need similar treatments.
Most seniors, like Rayfield Johnson, say they like day care. So do care givers, who have often been exasperated by their responsibilities. “It can be very traumatic being with your mother, for example, if she’s old and decaying,” says Patricia Bailey, Bethel’s day-care manager. “Say she’s incontinent and urinates all over the place. Say she takes off her clothes for no good reason. That can get on your nerves, even if you love her dearly. But send her to a place like ours, where you know she’s safe and secure and receives a hot lunch and activities–that’s comforting.”
“If care givers do not get a respite,” says U. of C. professor Pinkston, “stress-related diseases are going to be a problem.” She suspects higher rates of hypertension and depression among the spouses and middle-aged children who are care givers for the elderly.
Day-care centers are also popular for economic reasons. “The increase in health-care costs has been tremendous over the last 15 to 20 years,” explains Northwestern’s Conrad. “Hospitals are expensive, and so are nursing homes and home care. Adult day care is cheap.” Indeed, the common estimate for the cost of a nursing home for one year is $25,000. Providing at-home care for the elderly–nursing, a chore assistant, or physical therapy–runs about $15,000 a year, according to the National Association for Home Care. Day care, at an average daily cost of $30, runs roughly $9,000 annually.
Many states, swayed by hard numbers as well as humanitarianism, are encouraging day care by paying centers back for taking on indigent clients. Illinois has been doing so for a decade. Currently the Illinois Department on Aging is providing a mix of federal medicaid and state dollars to buy day-care services for 1,340 seniors at some 50 state-certified centers. Among the poor clients are Johnson and his cohorts at Bethel New Life.
New pressures are developing to expand adult day care even further. Senior citizens are living longer and enjoying it more, but their health does deteriorate and they still need their friends and family to help them cope. A 1987 report prepared by the Department of Health and Human Services shows that 71 percent of care givers are female, most often the senior’s daughter or wife. Today, says the report, the average American woman will spend 17 years of her adult life in child rearing and 18 years helping at least one parent; in 1900, a woman faced 19 years of child care but only 9 on the parental watch. To make matters worse, modern women are often not at the hearth fretting over gram or gramps, but out in the workplace.
Fully one-quarter of all full-time U.S. workers now shoulder at least partial responsibility for an oldster, according to a survey released earlier this year by John Hancock Financial Services in conjunction with Fortune magazine. On the job, care givers often evidence difficulty juggling roles. The DHHS study and the John Hancock survey both reveal higher levels of absenteeism, rearranged schedules, telephone use, and overall stress among employee care givers. Sometimes the working care givers are also raising children at the same time. That situation has coined a new term for baby boomers, heard frequently in adult-day-care circles–“the sandwich generation.” “What we’re going to have are a huge number of heavily burdened baby-boomer folks,” says Michael Creedon, director of corporate programs for the National Council on the Aging, a nonprofit advocacy group.
The burden on the working adult promises to grow as people who are now middle-aged not only grow older but manage to live longer. The U.S. Census Bureau reports that whereas 12 percent of Americans were over age 65 in 1987, that figure will edge up to 17.3 percent by 2020, and to 22 percent by 2050. By then the boomers themselves will be albatrosses around their children’s necks.
Alice Pursell hails from Woodstock, Illinois. In 1939, her father opened a grocery and meat market there. When Alice was six she told her dad she wanted to help him take inventory. “What can you do?” he wanted to know. “I can count the hot dogs,” she said. By the time she was in high school, Alice was running the candy counter and stocking the shelves.
For the past 36 years Alice has worked at Marshall Field’s downtown, for two decades in the bakery. Now the stately middle-aged woman is manager of the bake shop, and concedes that the food business is probably in her blood. “I’m not ready to give up my career,” she says, “but I don’t think it’s necessary, at least not yet.”
What could have forced her hand was her husband’s decline. Charles Pursell, the son of a Kansas farmer, studied engineering at the University of Kansas and the Illinois Institute of Technology and was a mechanical engineer for a division of General Motors. He and Alice were married three decades ago. Charles suffered some bouts of depression, but he and Alice, who had no children, were enjoying their lives and looking forward to their twilight years. Then three years ago, when Charles was 61, a health crisis hit.
Charles’s heart was found to be clogged and pumping poorly (Alice lays some blame to the rheumatic fever Charles had as a child); he underwent a seven-hour surgery that involved three bypasses and the replacement of two valves. The operation took place in August of 1986 at Northwestern Memorial Hospital, and Charles remained at the facility for another month, convalescing. Once he returned home to Oak Park it was still not smooth sailing; over the next 18 months, Charles went through 15 more hospitalizations–for pneumonia, neurological problems, and a faulty heart rhythm. Charles had also sustained some brain damage, a condition that was compounded by depression.
Finally a Northwestern doctor advised that Charles be placed in a nursing home, but Alice balked, based on the experiences she had had with her ailing mother and an aunt. Alice faulted her aunt’s nursing home for inadequately distributing medication. And her mother hated her experience, feeling that a nursing home was “a glorified county farm” that subjected her to the stigma of “being poor.” Because of this, Alice says, “I was willing to give it a try at home, provided I could work things out so I wasn’t completely swamped.” She hired a sitter who had ministered to her mother, and although the woman performed well, Charles did not.
“There was some depression still,” Alice says. Charles watched TV endlessly, or he fell asleep; he took to skipping his daily walk. “Partially it had to do with Charles not working,” says Alice. “He realized he just wasn’t going back.” At about this time, Charles was retired with generous benefits.
In June of 1987, Alice and Charles traveled to Kansas City to visit his relatives. That proved a turning point. There, separated from familiar surroundings, Charles became agitated and confused, there was an unpleasant incident at the hotel, and an ambulance was called.
After the Pursells had returned to Chicago, Alice consulted with doctors and social workers at Northwestern. Together they determined that Charles should try adult day care–Alice thought that the structure and contact with other people would be beneficial for him. For the last two years, Charles has been attending Suburban Adult Day Center (SADC), an Oak Park facility founded in 1979. The Pursells pay $33 a day, substantially less than what a sitter was costing them.
Each weekday Charles rises early and makes the coffee. Alice cooks breakfast, typically a low-cholesterol meal of egg substitute, an orange, toast, and skim milk. Before she departs for work, Alice leaves Charles a note reminding him that he has to go to day care. When the bus comes to pick him up, Charles, a distinguished-looking gray-haired man, appears at the door carefully dressed. “I try to have clothes ready for him that look fairly together,” says Alice, “so he can feel, hey, I am together.” He wears long-sleeved shirts even in summer because the blood thinners he takes tend to make him cold.
At SADC, which is housed in an Oak Park storefront, Charles is by turns gentlemanly and grumpy, depending on his mood. “This place has gone to hell in a hand basket,” he said one afternoon. When asked for an explanation, he offered a hazy account that involved a trip to the bathroom and the theft of a National Geographic he’d been reading.
“He likes the staff, and he has friends,” says Alice. “But when he finds out that a friend is not coming to the center anymore, or has died, he will go through a quiet time for two or three weeks. It’s a lost friendship, and in a way it reminds him of his own death, or that he could become more ill. Once he has formed an attachment and then it is broken in this way, it becomes more difficult for Charles to form a new one.”
Of the activities at SADC, Charles especially likes to draw. His favorite subjects are tractors and steam engines, passions that can be traced back to his youth in Kansas. He also seems to enjoy the afternoon discussions with the other clients. Recently the SADC nurse was leading a talk on crime on the el platforms. Charles, who likes public-affairs shows on television, was riveted; he put down his National Geographic and leaned forward in his chair. “It seems to me,” he said earnestly, “that to be safe you should get a permit to carry a gun.” Later Charles revised his gun-toting prescription: “A woman should carry a rubber snake in her handbag–if she’s threatened, she should pull it out.”
“This arrangement allows me to work and feel relatively good about it,” says Alice, “but there’s always the thought: This may not be the best. Maybe Charles could be someplace else, working at a higher level. It all really boils down to the adjustments we have had to make. If Charles or I had family nearby who could care for him, that would be different. Or if it were like it used to be in Woodstock. The old guys would congregate on the benches in the city park. People who had business around the square knew pretty much who those old guys were, and they kept an eye on them. But that’s not the way it is anymore.”
The town-square approach to handling the elderly is long gone, and even the mold for adult day care is changing. New and improved models have been flooding the scene.
One of the nation’s pioneering day-care centers, On Lok Senior Health Services in San Francisco, offers its clients a package that gives them access to physicians, psychiatrists, dentists, home-delivered meals, physical therapy, and residence in a nursing home, if that proves necessary. “We’re like a health maintenance organization,” says Ruth Von Behren, On Lok specialist for adult day care. As part of a pilot program, DHHS has allowed On Lok to be compensated by medicare for this package, which runs some $2,000 a month for the aged who would ordinarily be in an intermediate-care home, or for the more severely disabled, a skilled home. For the poor, the costs are fully covered by medicaid and medicare; someone eligible for medicare alone pays about $750 per month of the $2,000. A federal grant is extending the On Lok model to eight other day-care centers across the country–including, in November, Bethel New Life.
In the meantime, entrepreneurs are opening centers for profit. Larry Levin, who used to be a nursing-home operator, launched his Skokie facility, Alternatives for Aging, three years ago in what used to be a bakery. He touts it in these terms: “Instead of one washroom stall, we have six. Instead of one cot to rest on, we have a whole rest area with beds and a call system for emergencies. We have a nurse on duty 40 hours a week. We have therapy with plants. Every now and then we go on outings–to the Baha’i Temple or downtown–and once a week, we bring in movies.” Levin hopes to get into the black once he attracts more clients. In the interest of doing so, he speaks regularly at churches, synagogues, and VFW halls on “the graying of America and the value of day care.”
A New Jersey man named Robert Willis, who used to own a string of child-care centers, recently left that business to try the senior day-care game. His marketing tactic is to attach his centers to hospitals; he is currently negotiating with a dozen facilities in New Jersey, Pennsylvania, and Florida. Besides the hospital affiliations, his other selling point will be a low client-staff ratio, perhaps six to one. Willis’s hopes are high.
Senior Service Corporation, a Connecticut-based firm devoted solely to adult day care, has entered into a joint venture with Holiday Inns to develop centers in motels. The first such facility opened in April, after several rooms had been remodeled to create larger areas, at the Holiday Inn in Norwalk, Connecticut. Ten clients are now being served there.
“For a new user,” explains Donna Wagner, a University of Bridgeport professor and Senior Service principal, “there is often the feeling psychologically of giving up independence. Having a day-care center at a Holiday Inn lessens that feeling. A Holiday Inn, after all, is a welcoming setting, with a sense of hospitality.” The hotel pool also means the clients can swim, an optimal form of oldster exercise, Wagner notes. She acknowledges that her company initially feared that regular hotel guests might not wish to share space with old folks on walkers, and so to shield them from the elderly, the day-care center has a separate entrance. “Frankly, though, the regular guests are pretty unaware of what’s going on,” says Wagner.
Perhaps the most significant new impetus for day care arises from the corporate sector. “Employers who wish to compete for workers–who want a competitive edge–are going to have to develop elder care for working care givers,” contends Michael Creedon of the National Council on the Aging.
Some companies, like John Hancock, are marketing insurance policies that add to health-care insurance the cost of adult day care. And one corporation is actually opening a center of its own.
For some time the Stride Rite Corporation, the Boston-based shoemaker with annual sales of $380 million, has operated a child-care center for kids up to age six at its Cambridge headquarters and at a site in Boston. A couple of years ago the chairman of the board of Stride Rite, Arnold Hiatt, noticed a story on the sandwich generation in the Wall Street Journal, and sent a note to the woman administering his child-care centers, Karen Leibold, about the possibility of elder care for Stride Rite. “I thought it was an unusual note,” recalls Leibold, “partly because no one was talking about elder care as an issue back then.”
She launched an assessment of employees’ needs. Among other things, she found that of Stride Rite’s 500 employees, 27 percent shouldered major responsibility for one or more children under seven, and 25 percent had responsibility for an older or disabled adult. Leibold also discovered that within five years, an additional 13 percent of Stride Rite workers expected to have an old person to worry about. It looked as if Stride Rite’s coveted middle-aged workers might be subjected to lots of added stress, which often results in lower productivity, more unscheduled days off, or quitting altogether.
Consequently, Hiatt endorsed adult day care for Stride Rite. A center is set to open late this year in 6,000 square feet at the Cambridge headquarters, adjoining the kids’ facility. Leibold anticipates that the location should facilitate a good deal of cross-generational activities. “We’ll talk to the kids about aging as an issue,” she says, “so they can understand not only what it means to be 4 but what it means to be 84.” The cost of Stride Rite’s adult care should come to about what its child care runs, $140 a week. Any old person in the community can attend the center, although there will be a discount, about one-third of the cost, for employees.
If there is a question about the advisability of adult day care, it is whether the service actually alters its clients’ ability to function. Or is it, in some cases, morning-to-afternoon warehousing?
Does day care forestall entry into nursing homes, for example? Some authorities say that that question confuses the two populations–those ready for the nursing home and those who would benefit from day care–when they are really separate and distinct. Moreover, according to a 1987 report to the U. S. House Select Committee on Aging, only 5 percent of those over 65 are in nursing homes anyway. William Weissert, a professor of health policy and administration at the University of North Carolina and an authority on adult day care, argues that most elderly not in day care would not be in nursing homes either but would be tended by relatives or hired homemakers. “The notion that day care keeps people out of nursing homes is just not right,” Weissert insists.
On the other hand, the study by Northwestern’s Kendon Conrad showed that day-care administrators claim that fully half their clients would be in nursing homes or hospitals if day care were not available. On Lok in San Francisco has a program that focuses on day care for 300 of its very infirm patients. Ruth Von Behren says it’s “delaying deterioration in most cases–but we certainly aren’t making anybody young again.”
The anecdotal evidence from administrators suggests that day care does improve functioning. “If there is intervention by staff, there will always be change,” claims Mary Hagarty, the SADC administrator and a founder of the Illinois Association of Day Care Providers. Hagarty says that Alzheimer’s patients, the least functional of her clients, normally evidence difficulty eating, talking, and getting to the bathroom on time; she cannot remember an Alzheimer’s client for whom SADC has failed to reduce at least one of those problems.
Patricia Bailey of Bethel New Life points to a severely addled man whom her staff helped to learn to tie his shoes–an awesome feat when you consider the man’s condition. Does Bethel help others like that? “I think so. I hope we are doing that,” says Bailey.
But Weissert, who has synthesized 27 studies on adult day care, has drawn conclusions that cast doubt on its efficacy. “Does day care improve physical functioning, or better said, do the participants get worse slower?” asks Weissert. “The answer is no, although there does seem to be a little reduction in reliance on home health care and on outpatient treatment. Does day care affect mental functioning? No.”
The main positive effect surfaces, says Weissert, when the elderly are asked about their “life satisfaction”–are they pleased with their health and life in general? “In many studies, we see a small transient effect,” reports Weissert. The surge in life satisfaction, also evident for care givers, lasts no more than a year on average for both groups.
“If day care were a drug,” says Weissert bluntly, “you wouldn’t market it.”
The U. of C.’s Pinkston thinks Weissert undervalues the jump in life satisfaction. “Life satisfaction is worth everything to me,” she says, “because we are a civilized society. Most old folks in day care are only capable of doing a little bit better. The point is not that these people will become independent again; what you often find after day care is a more contented and alert person, which is very hard to measure.”
Pinkston, whose upcoming book will concern intervention techniques designed to improve functioning, has found that some surprising activities can make a difference: “You see some wild things sometimes in these places. At one center, they actually had people in wheelchairs square dancing, people who could only follow one instruction at a time. ‘God,’ I thought, ‘this is crazy!’ Then I saw the smiles and behinds twitching and a guy over in the corner clapping his hands, who had never done that before. You would never suppose that a plastic ball tossed around a circle could create joy, but that’s something that these people can pull up from their histories and appreciate. Discussions on subjects like babies and dogs work exceptionally well, too.”
For his part, Weissert also has ideas of ways to make day care work better. Instead of essentially mainstreaming all the physically and mentally handicapped elderly in day care, he would like to see those with the greatest potential for improvement segregated. Then centers could concentrate their rehab efforts on them. When it comes to physical activities, he advises concentrating less on large motor movements and more on small tasks, such as turning a doorknob or pouring liquid from a pitcher.
Whatever day care’s success, Weissert recognizes that the movement for it is inexorable. “Realistically,” he admits, “the major component in the future will be whether day care can free people up to go into the labor market, giving them the sense that their mother or mother-in-law is in a protected environment.” In other words, the sandwich generation must be appeased.
It should come as no surprise that Senator Bill Bradley, a tribune of the sandwiched, has introduced legislation mandating day-care benefits for medicare recipients. So has California congressman Leon Panetta. If medicare begins to cover day care, it will cost $1.4 billion over four years, Bradley’s staff has computed, but Bradley evidently thinks the additional expenditure is worth it. “The senator feels that there is a need to care for the elderly in a way that maintains the continuity of the family relationship,” says a spokesperson.
In the room next to the one where Rayfield Johnson hangs out sits a woman named Olivia Smith. She is 89, five-foot-four, and weights 85 pounds. A stroke has impaired the functioning of her left hand. In fact she has weathered two strokes, has hypertension, and has been diagnosed as suffering from senile dementia, and yet medically there is no need to institutionalize her.
Still, age has handicapped Smith. Because her feet swell, they must be kept elevated, and she can walk only with assistance. She passes her time just sitting. She wears senior diapers and only occasionally garbles out a few words, most of them incoherent. “Olivia’s like a baby,” says one Bethel attendant.
This was not the woman her daughter, Charlene, knew when she was growing up in Kennett, Missouri, a small town in the southeast part of the state. Charlene’s father died of pneumonia in the 1930s. “He had no insurance, and my mom raised us on her own,” says Charlene. “She worked so hard. She worked day and night as a maid and a cook in a cafe, and she also took in washing and ironing. She was so outgoing. She went to see somebody every day, and people came to see her. In downtown Kennett everybody knew Miss Olivia. If she wanted a charge account, all she had to do was ask. Now, when Charlene asks her mother, “Who am I?” Smith replies, “You’re the lady who takes care of me.”
Smith originally came from Hennings, Tennessee, the town Alex Haley made famous in Roots. Her formal education ended at fourth grade. “She can write her name and read simple things, like a Dick and Jane book or the newspaper headlines,” says Charlene. Smith drummed two lessons into the noggins of Charlene and her brother: always have insurance, and get an education.
Charlene moved to Chicago in 1949, married a steelworker, and had eight children. Her brother came to live in Chicago, too; today he works in a paper-box factory.
Having outlived all three of her husbands, Smith moved to Chicago in 1979 to be near her children. She lived with Charlene on the west side for a while, then settled happily into a public-housing high-rise for seniors. The two strokes took their toll, however. Smith neglected to eat. Her family noticed that she was stuffing her dirty clothes into a bag with the clean ones, that she was leaving food out and uncovered on the stove. Sometimes she put on two dresses simultaneously. Their greatest concern was that she began to wander about with no destination.
Four years ago, a decision was made that Smith would come to live with Charlene and her family. Although Charlene had a husband and three of her eight children at home, the youngest of them 14, she made room.
Smith tried to assume her traditional maternal role. When Charlene was nearing completion of a degree in social service at Concordia College in River Forest, Smith would wait in the window for her daughter to come home. “You’re late today,” Smith would upbraid her; but bossy as she was, she was obviously proud of Charlene’s accomplishment. Smith was able to attend Charlene’s graduation in February of 1987.
When Charlene, a round-faced woman now 58, went looking for a job, she realized that if she did secure a position, arrangements would have to be made for her mother during the day. A social worker directed her to Bethel New Life, and Smith became a client there, with the state footing the bill. While Charlene has had trouble finding full-time work, the fact that Smith is at Bethel at least enables her to continue her search. “If she were here all day,” Charlene says, “I just couldn’t leave her.”
The suggestion of a nursing home for Smith unsettles Charlene: “She will never go into one. Medically, the doctors and the dieticians could probably do more for her than I can, but I love her and they couldn’t possibly have the personal feelings for her that I do. If I put my mother in a nursing home, I would feel I had failed her as a daughter. There is no way they could do the things for her that I do.”
Every morning, early, Charlene bathes her mother and feeds her a breakfast of cereal and fruit she has pureed in a blender. (“My mother has false teeth, but she still can’t chew well,” she explains.) Fifteen minutes before the Bethel bus arrives, Charlene shepherds Smith on a walk that covers the short distance to the corner of Charlene’s property. Smith smiles at the flowers and the children. When she returns from Bethel, Smith sits in a brown office chair, bolstered by a pillow. Dinner is at six o’clock. Charlene often combs and braids her mother’s hair before bedtime, which comes at nine; Charlene or one of her sons conducts Smith upstairs to bed.
Smith’s mind has evidently returned to her youth; she responds only to her maiden name, Olivia Woods. She frequently utters her father’s name, which was Matt.
“She doesn’t know who I am anymore,” says Charlene. “In over a year, she hasn’t called my name. She’ll look at me sometimes and smile, but what she says makes no sense to me. It’s been hard to understand that she isn’t like she used to be. Probably in my gut I really don’t understand–I want my old mother back. I know that’s foolish and a fantasy, but there it is.
“What also bothers me is that I see myself in my mother. Am I going to end up like that? Is this going to happen to me?
“Yet I don’t see this as a burden. You have to understand: she was always caring for me as a single parent, working for pennies to see me and my brother through. To see her deteriorate in front of my eyes does bother me, but I don’t resent doing for her, that much I know.”
Art accompanying story in printed newspaper (not available in this archive): photos/Kathy Richland.