November 30, 1997

The Last Best Friends Money Can Buy

Normally you didn’t have to interview for a home health care placement–the agency just told you where to be, and when, and a little background information on the client. But Lorna Kingston didn’t mind. It would be a good job if she got it–$150 a day for a 24-hour live-in. The client, as Nick Newcombe, who was overseeing her home care, had explained, was resisting help and had fired a succession of workers. Newcombe thought the client would feel empowered if she had a choice, and so had arranged for Lorna and two other aides to be interviewed by the woman, her nephew Howard (Buzz) Katzen and his wife.

Dressed in a pale yellow suit, Lorna, a 35-year-old Jamaican immigrant, sat in the lobby of the building on Central Park West and waited to be summoned upstairs. She went over in her mind what more she knew of this woman’s history: that the week before, Rose Enselman had called the police, saying she was being held prisoner by the home attendant. Then she had barricaded herself in her bathroom while naked and demanded the bread and water that was any prisoner’s due. The police, upon arrival, had summoned an ambulance, and Rose was taken to Mount Sinai Hospital for psychiatric evaluation and treatment.

The interesting thing about the delusion was the grain of truth it contained. Just months before, as Buzz had explained to Newcombe, 99-year-old Rose was still leading a relatively independent life in her apartment of three decades, with only occasional visits from a housekeeper, a laundry woman and a social worker from Dorot, an Upper West Side service agency for the elderly. She had recently attended the wedding of her geriatrician, Dr. Cathryn Devons, unaccompanied, wearing Ferragamo shoes and a coat from Bergdorf Goodman.

But a number of little falls had prompted Buzz, her only available relative, to hire an agency whose aides Rose “hated”–and whose presence had not prevented a fall out of bed that resulted in an injured hip, the pivotal crisis for many elderly. As Newcombe put it, “When you’re 99 and you sneeze wrong, all of a sudden your brain’s crooked.”

Rose quickly became truly feeble, and delusional as well. The aides had done nothing to restrain her; her own decrepitude was responsible for that. But home health care and real infirmity had arrived around the same time, and late that night, Rose’s mind conflated them into one malevolent force. Hours after her arrival at Mount Sinai, a calmer Rose still spoke of the “nice attendant” she knew from the daytime and the “monster woman” who invaded her apartment at night.

Back at home now, medicated by the anti-psychotic drug Haldol, Rose ran the interview herself, explaining to Lorna what the job required–assistance in bathing, dressing, preparing food and getting around the city. She was a frail, stooped woman, hard of hearing and poor of sight–but not the least bit timid. Why did Lorna think she was right for such a responsible position? Rose demanded.

Lorna explained that in Jamaica she had cared for her grandmother and great-grandmother, who had lived past 100, and that she was a good listener and accustomed to hard work. “I told her I would try to make her happy,” Lorna said. Rose hired her on the spot–even though Buzz and his wife had been impressed with another of the aides, who had worked with Rose. (“She was very professional,” Buzz said, “and had lasted two nights with Rose. Any sane person would already have jumped off the balcony.”)

Lorna started work the same day, Oct. 11. Rose immediately forgot her name and began calling her Cookie. “I thought the reason she hired me was my great-grandmother,” Lorna recalls. “But that night she told me: ‘Cookie, the reason I picked you instead of the other one? She was too big.’ ” If push came to shove, maybe with Lorna she’d have a fighting chance.

The American home health care boom began in the early 80’s, a response to increases in both the number of elderly (there were 25.6 million Americans 65 and older in 1980; there will be around 70 million in 2030) and the cost of nursing-home care. The average home now charges $127 a day, though special services can add hundreds more. And then there is the homes’ notoriety as a last stop for the very old and ill, the point of no return. Though a variety of alternatives now exist–from hospices to assisted-living complexes to adult day care–the most popular place to stay, unsurprisingly, is home.

Seven million people now receive some form of paid home care in this country, without which many would have to enter an institution. Endorsements of the practice by Medicare in 1965 and Medicaid in 1971 gave home care a big boost; meanwhile the desirability of aging or recuperating at home was growing in the popular mind. It was in 1979 that Norman Cousins, in “The Anatomy of an Illness: As Perceived by the Patient,” wrote that “a hospital is no place for a person who is seriously ill.”

The quality and experience of home care workers varies widely: many individuals providing paid home health care have relatively little formal training. It still takes a nurse to give intravenous injections, insert catheters, monitor kidney dialysis and the like. But many older people can manage with a little help and can thereby maintain some degree of independence amid the comfort of familiar possessions and routines. These are people who need only a companion-housekeeper who cooks and cleans but provides no “hands on” care, or a licensed home health aide with at least 75 hours of training in the specific needs of the elderly like bathing, dressing and the taking of medication.

For those 65 and older, Medicare will pay for skilled recuperative care after an acute illness–generally up to four hours a day, 7 days a week, for 40 days or so. For anyone poor, Medicaid pays for ongoing home care for those with chronic maladies; when those costs reach 90 percent of the cost of a nursing home, the patient is usually sent to such an institution. Families with money can find comfort in the care they can buy for elderly relatives–and nightmares in the endless ways that the costs can quickly exhaust a fortune.

For home care aides, of course, the signs are auspicious: their field is expected to be one of the fastest-growing industries in the United States in coming years, with a 119 percent increase in jobs predicted by the Bureau of Labor Statistics from 1994 to 2005. But this growth is not occurring in an entirely savory way. Perhaps because the Federal budget for it has increased so rapidly (Medicare’s home care budget in 1996 was $16.9 billion, up from $3.5 billion in 1990), perhaps because it is difficult to monitor, fraudulent billing by companies has been epidemic. Indeed, it was so easy to make home care money off the Government that nearly 100 new companies a month were getting on the gravy train until President Clinton placed a moratorium on them in September, pending the establishment of a better vetting system. The two top executives at the Columbia/HCA Healthcare Corporation, the nation’s largest health care company, resigned in July during an extensive investigation of Medicare billings, particularly for home care and laboratory tests.

Other problems have to do with abuse on a more personal scale. The elderly at home with attendants are vulnerable in the same way as babies left with nannies. When two cousins in Bensonhurst, Brooklyn, last year accused their home care aide of writing herself $600 in checks from one cousin’s account, the woman bludgeoned them with a 36-inch metal rod and then choked them to death. Sometimes it’s the worker who’s abused. In the Westchester town of Eastchester last November, both an 80-year-old millionaire and his 35-year-old home attendant were murdered. Articles on the killings revealed that two of his previous aides had filed criminal charges against the man, one for threatening her with a gun, the other for forcing her to perform a sex act.

But these horrors distract us from a more subtle and significant story. While at least two-thirds of home care for the elderly is still provided by relatives and other nonpaid caretakers, that figure appears to be shrinking. We don’t take Grandma in anymore–or at least not as readily as we used to. In part it’s because we’re busier, or we’ve moved away, or we still have kids to support, or because she’s likely to live so long. Nobody feels too good about it, but old age has expanded faster than we can handle. The nanny tradition for children is time tested, but at the other end of life there is a new kind of nanny–and a caretaking relationship fraught with guilt, resentment and love that we are very likely to be wrestling with for years to come.

You see it on the sidewalks and in the parks and lobbies of neighborhoods throughout cities like New York: elderly people, often white, assisted or simply accompanied by younger women, usually black or Hispanic. As our parents and grandparents live longer, and spend fewer and fewer of their final years with us, a caring woman from the Caribbean–her face, her voice, her touch–will very likely be the last human contact many of them will have.

Though Rose’s one-bedroom apartment was new to Lorna, she found many of its trappings familiar. In the living room were a large-button telephone and a daybed she knew without asking would be hers; in the bathroom were baby wipes and Depends. Rose’s twin bed had a railing on it; the dining-room table was given over to the bottles of prescription drugs that Lorna would dispense. And the thermostat was set at a tropical level, which suited Lorna fine.

Other than that, the apartment, like many older peoples’, was a shrine to a life already lived–with photos of dead relatives, books read long ago, furnishings from another era. A Christmas card from George Bush was tucked into a dusty Venetian blind, near a card, hand-drawn in crayon, that read, “Dear Person, Have a Happy Passover.” There was a signed, framed photograph of Albert Einstein, as well as a photo of Justice Louis Brandeis.

Even though Lorna was more diminutive than the competition, she still felt that Rose was afraid of her. She tried to break down barriers by fussing over Rose’s appearance and by listening. “You have to give them room and talk to them so nice to see what they’re like,” she says. She realized that Rose loved dancing in her walker–or “race car,” as she called it–and after a couple of days Lorna got permission to play her records, and the two would dance. And when she saw that Rose was having trouble swallowing, a side effect of the sedating medication, she used the blender she found under the Heritage Foundation calendar in the kitchen to increase the variety of things Rose could eat.

Nursing is one of the few careers traditionally open to women in Jamaica–a fact that dovetails nicely with Americans’ growing needs. Lorna’s mother, now employed by a nursing home in Brooklyn, left the island for New York in 1988; Lorna had arrived a year earlier, at age 25. Lorna’s aunt and stepmother are also here, both employed as home care workers. “In the countryside, we always take care of old people ourselves,” Lorna says. And frankly, she feels, it is superior to the American system. When you do it yourself, “you give them more love, you understand much more about them. You make them more happy.” That happiness is important, she says, because “you have some old people who just give up on their life.” One client she was fond of had suffered bouts of depression and died one night in a fire–probably from smoking in bed, firemen suggested outside the Lower East Side apartment when Lorna arrived for work. But a friend of Lorna’s, who had met the woman and felt he knew her, told me he thought she had set it intentionally. Lorna didn’t contradict him. “I took very good care of her; she was my baby. We could sit down and talk–she called me Character. She said, ‘You don’t know how much joy you bring to my life.’ ”

Lorna comes across as a joyful person. Though she doesn’t make much money, she is glamorous, always wearing stylish clothes, gold bracelets and gold earrings. She has a ready smile and makes good use of lipstick. She paints her fingernails and toenails red and braids her own hair. She lives in a two-story townhouse of recent construction on a redeveloped block of the South Bronx with her fiance, Robin Stephenson, and her sons, Courtland (Junior), 14, and Germaine, 12. Though work can force her to leave them for days at a time (live-in pays the best), she feels the sacrifice is small compared with others she has made.

To bring that joy to her clients–and advance her own prospects–Lorna entered into the kind of Faustian bargain that immigration presents to many from poorer countries. When she came to America, unable to procure visas for her children, she left them behind.

“I leave Germaine when he was 2, and Junior when he was 4,” she says, “and Germaine was so close to me, I cried every day.” When after five years she finally went home to fetch them, in 1992, “Germaine didn’t know me. He really didn’t. I’d say, ‘Come here,’ and he’d run away from me. It hurt so much. When I left Jamaica with them, the immigration man said, ‘Why you go and leave your kids like that?’ I felt so bad! I said I did it because I had to get them a better life.” Doubtless the official knew that already–New York City is full of immigrant mothers who leave their own families to take care of other peoples’. But Jamaican culture is conflicted about the trade-offs–just as Americans are about leaving the care of our parents to strangers.

Lorna earned her license to be a home health aide at Caliber Training Institute in New York, but says that doing the actual work taught her more. She once saw a colleague knock down a demented elderly person who kept barging into her bedroom. “I felt so bad, I will never forget it,” she says. “I would never do that–you don’t do that to nobody who’s not in their senses. I said, Remember, you have a mother and someday you could be like that. Some old people are like a baby, they don’t understand.

“This field is not for everybody. People who don’t have patience should stay away. You have to love people.” Lorna’s own patience would soon be put to a big test.

Lorna and Rose had wound up together because Buzz, 65, of Westport, Conn., a Xerox executive on the verge of both retirement and departure with his wife to a winter home in Scottsdale, Ariz., was at the end of his rope. His aunt Rose “hated each and every one” of the home health aides supplied by the first agency he engaged. After brief trial periods, she had rejected assisted living in Connecticut and White Plains (“she didn’t like the way people there dressed,” he says); a place in her own neighborhood that had once seemed appealing would no longer accept her because she couldn’t walk by herself.

Under the circumstances, Buzz sought out Fine & Newcombe, one of the larger of the three dozen geriatric-care-management businesses in the New York metropolitan area. Such firms typically oversee all aspects of the care of an aging person–everything from advice on living arrangements to consultation with doctors to accounting help for monthly bills. Thirteen years ago there were only a handful; now there are more than 1,000 nationwide. Fees range from about $100 to $150 an hour in New York, making them affordable to only a small segment of the population. Older people sometimes sign themselves on, but the agencies are particularly useful for relatives of the aged who live in other cities, providing a means of watching over the elderly from afar–like a kind of child surrogate.

For an amazing number of years, Buzz explained to Newcombe in the care manager’s Upper West Side office, Rose had taken care of herself, riding buses alone into her 90’s. She had outlived a husband who died 28 years ago, a daughter who died seven years ago at 70 and virtually all of her friends of her generation. A forceful, some would say controlling, woman, she had alienated three nieces who lived in Manhattan; when Buzz’s mother and another sister died, the care of Aunt Rose fell on him. It was a responsibility he had never sought.

“Rose expected me to transfer my affections to her,” he says. “I couldn’t, but I felt I had to take care of her for one reason. And that is, if my mother were alive, she’d tell me to take care of her sister. I was the only one geographically available.” The first request was to help her rewrite her will. She had an annual income of about $15,000 on $220,000 of assets, and received a $400 monthly check from Social Security. She wrote the new will “exclusively for the purpose of eliminating her granddaughter–her only living descendant.” When Rose decided to write yet another will, Buzz persuaded her to put the granddaughter back in. In addition, she made a large gift to Brandeis University (though she had not attended, Rose was a longtime benefactor) and “gifts of $1,000 to 18 people, half of whom are no longer alive,” Buzz says with resignation.

As she deteriorated, he assumed power of attorney for her. The stabilized rent for her one-bedroom apartment with terrace was only $560 a month, so 24-hour home care (at $150 a day) and the services of Fine & Newcombe were things Buzz felt she could afford, given her advanced age. He signed on with Nick Newcombe, interviewed and hired Lorna, returned to Westport and then, with eight days to go until he left for Scottsdale, he phoned Lorna at Rose’s, praying that his problems were solved.

They were not. Though Rose by day was acting reasonable enough, by night the demons came. “Cookie! Cookie!” she called, all night long, but when Lorna came, Rose couldn’t say what she needed. She got out of bed by herself, clambering over the rail, and turned lights on and off all over the apartment. About 3 A.M. she came under the spell of what would come to be known as the Scream: head back, eyes closed, she began a high-pitched ululation that went a-yi-yi-yi-yi-yi!

“I try to give her something cool, I try to give her something warm, nothing help,” sobbed Lorna in frustration. She called Robin, who told her to stick with it if she could but not feel bad if she couldn’t. The next night was the same. And the next. Exhausted, Lorna told Newcombe she couldn’t do it anymore. She hadn’t slept in three days. Newcombe begged her not to quit, and sent over Claudia Piper, 30, to relieve her from 8 P. M. to 8 A.M.

Another Jamaican living in the Bronx, Claudia Piper was not as cheery as Lorna, but she was steady, capable and articulate. She was hopeful for the new job because her previous one had been awful. The client, a woman in her 60’s with Alzheimer’s, had been fine. But the crowded Upper West Side apartment also contained the client’s imperious and inconsiderate husband, who wouldn’t let Claudia receive phone calls, fed her only leftovers from his plate and urinated all over the toilet seat that Claudia helped his wife use. Claudia knew that home care work suffered from many such pitfalls. There was the 300-pound woman she had had to lift onto and up from her bed; the four-packs-a-day smoker who demanded that Claudia hide the habit from his nurse; the squalid condition of many apartments.

Newcombe warned her that taking the new job could be like jumping from the frying pan into the fire, but Claudia said the frying pan was so bad she’d be willing to try. She was paid $10 an hour, $120 for the shift–the same as Lorna now got–but she had to suffer, she soon realized, a bit more. While Lorna could focus on the salon and doctor appointments, Claudia would become the expert on Rose Enselman’s nocturnal dysfunction. She quickly discerned a pattern.

“It starts about 10 P. M., and sometimes it goes on all night,” Claudia says of that time. “Sometimes I get two hours of peace and then it starts again.” It, of course, was the uncontrolled screaming from the bedroom. Claudia sighs to recall how neighbors complained. She moved Rose to the living room. “And then that neighbor started banging on the wall, I think with pots.” Claudia seldom got five hours of sleep a night, and what little she did get came in many small parts. Claudia’s mother in the Bronx, who cared for her 8-year-old daughter when Claudia was on a job, would receive calls in the middle of the night. “At 2 o’clock I would call her. And she’d say, there’s nothing you can do.

“At first I felt frustrated for me, not for her. It’s like, it’s night, and you’re supposed to be sleeping at night.” One morning after a long night, Claudia opened the door for Lorna and said, “Lorna, I think I’m going to quit.”

“I was saying, oh, Claudia, please don’t give up,” Lorna says now. “I said: ‘Don’t quit tonight. Come tonight and see how it goes.’ ” Lorna was finding that the daytime Rose, the coherent Rose, was a person who could grow on you. She had told Lorna of her love of the opera, about her journeys to four continents, about her lifelong support of women’s rights. “The life she used to live!” Lorna said at the time. “And how fast it changed for her. I feel sorry for her–she can’t help it now.” She felt Claudia would come to feel the same way. “You know what happens?” she told her. “After a couple of weeks, you get so close to her you don’t want to give up.”

Claudia didn’t give up. But Rose was contemplating it. Though she had no specific recollections of her nighttime delirium (“I was screaming? Oh, darling, I’m sorry,” she’d tell Claudia in the morning), she felt physically and spiritually awful. Claudia had been working only a few days when she and Lorna began to fear that Rose wasn’t eating enough. Her ability to swallow had deteriorated to the point where food stuck in her throat made it sound like she was gargling when she talked. Buzz, Newcombe, Evelyn Morris (the social worker from Dorot who had been checking on her weekly for nearly two years) and an accountant Buzz had hired to pay her bills met in the apartment to discuss her affairs. Lorna, as seemed to be the protocol at such moments, left the room.

Rose, appearing exhausted, horrified the rest of them by saying, “If I have to live like I’m living now, I’d rather die.” She complained about the job being done by Lorna, but only halfheartedly. Not just her presence, Newcombe suggested out of Rose’s earshot, but the gathering of all of them had driven home to her “just how managed she was,” how dependent on others. The next day she had a fever, and Cathryn Devons suspected that aspirated food had brought on pneumonia. Rose was readmitted to the hospital.

Lorna and Claudia sat by her there for 10 days (a common practice, which prevents a client from having to find new caretakers when her hospital stay is over), helping to nurse her through the crisis. Even though questions remained about how to handle Rose’s trouble swallowing while on the sedating medicine, once the pneumonia was cleared up, she was sent home.

Lorna and Claudia resumed their shifts at Rose’s residence. When I came to visit, it was a big production: Rose wouldn’t receive me unless she was well put-together, and there was nothing Lorna liked better than dressing Rose up. Would she prefer the readier access to doctors that a nursing home might provide? I asked her. Never, she said. “In your home, you got a right to get mad, you got a right to get glad.” Did she miss the opera? “Ever so much.” What was her favorite television show? “Charlie Rose.”

Claudia watched her and talked with her as late into the night as she could but the Scream returned and intensified. Once Rose got started, she wouldn’t take any of the medications intended to calm her down. And it was hard to anticipate when it would begin–sometimes late afternoon, sometimes early morning, once for 48 hours straight. “Claudia and Lorna were living in a screaming hole,” says Newcombe, who made frequent visits. “I couldn’t tolerate the intensity of it for even 15 minutes, and I’ve heard a lot of screaming patients. I said: ‘Rose, use your other voice. You have a lower voice than that.’ And she said: ‘Oh dear, I don’t know what’s wrong with me. I just a-yi-yi-yi-yi-yi!’ This began to go on night and day.”

Lorna says: “I always hurt for Rose, always. When she’s good, she’s such a sweet person. I would say, ‘Oh, Rose, I love you,’ ” she says, indicating how she would embrace Rose, “and she hugs me, too.”

One night, suffering a fit of delirium in her bed, Rose seemed to Claudia like nothing so much as a baby who needed comforting. “Normally they train you to be so cautious, to wear gloves all the time,” she says. That didn’t seem the right thing in this situation. “You want to stop the baby from crying, so you hug it, you just do it.” The young Jamaican woman went over and put her arms around the frail, quaking Jewish woman. It seemed to help. Both women were in their nightgowns. Rose seemed to calm down a great deal. Claudia lay down next to Rose with her arms around her, and both of them fell asleep.

“I don’t know what’s wrong with families here,” Claudia told me on a day when she and Lorna overlapped at Rose’s apartment. “They don’t spend time with their mother or father, they don’t care. I’ve been into maybe 100 homes. Most don’t get affection from their family. They have to get it from an outsider. And it helps, I’m telling you, it helps. It’s a very good healing process. To have a person who really cares about them be around them.

“This one lady, her granddaughter wouldn’t do anything for her anymore. She called up her mother, and told her the grandmother did a b.m. And she wouldn’t clean it up.

“I said: ‘Clean her! I do the same thing every day. What’s so hard about it?’ And the daughter told the lady, as soon as you get home, I’m putting you in a nursing home.”

It is easy to be hard on children of the dependent elderly. No one ever does enough. Americans, perhaps, do less than those in poorer countries, but our parents live to be older and can persist much longer in a debilitated, needy state. The American dilemma, at the century’s close, is what to do about the hidden costs of longevity–not just the economic ones, but the intimate, personal costs as well. Home health care aides, among our least educated and less well paid, understand these costs as well as anyone else.

“I know if they put Miss Rose in a nursing home, she would die,” Lorna says.

Jamaica exists like a shadow reality for women like Lorna and Claudia. Memories of wood fires and dirt roads, heat and humidity, spicy food and reggae, the “jelly” of the coconut and the closeness of families create aches of longing alongside equally sharp memories of why they left.

The morning I visited the small town of Maggotty in St. Elizabeth parish, Lorna’s sister May had got up before 6 A.M. to sell fish. She had purchased the freshwater red snapper at a local farm using money provided by Lorna, and then shared two taxis to get to the neighboring Ginger Hill area. There, with a 40-pound bucket of fish at her side and a 45-pound bucket of fish heads on her head, she walked door-to-door until all were sold. She returned to the tidy, two-room shack she lives in with her husband, Joseph, and their four children. She was soaked with perspiration, her $30 profit in small damp bills in a skirt pocket. I thought now she’d be free to talk, until I realized that the school teacher on the porch was waiting for May to braid her hair. “When do I stop working?” asks May. “When I close my eyes on the pillow!”

Nearby I visited Lorna and May’s childhood home, a green-painted cinder-block structure with a corrugated roof. Their brother Man lives there now, with his toddler son and girlfriend. He drives a minivan taxi that Lorna bought for him; Lorna’s next project is to buy May and Joseph a bigger house. Now that she has a green card, she comes home every couple of years. Her father, buried out back, died of a brain tumor after Lorna left but before she had got the green card that would let her re-enter the United States if she flew home. One of the agonies of her life was not being able to come visit and tend to her own ailing father in his last days.

If Lorna and May didn’t bear a strong resemblance to each other, I would never guess they were sisters. As girls, they went barefoot, skipped school for the sugar-cane harvest and bathed together in the creek under the No. 1 Bridge. But today, Lorna wears stylish outfits and makeup and keeps her hair just so; May wears plastic sandals and a T-shirt and is covered with a sheen of sweat. Lorna has taken many classes in New York and speaks clear English; May’s accent is so thick I often don’t know if she’s speaking English or the Jamaican patois. May tells me she would “leave tomorrow” if a visa came through–”everyone around here would.” She thinks Lorna might come to live in Jamaica again. Back home, Lorna tells me no, not after New York, not after what she has achieved. “In this country, I learned to read and write a lot better. I got my G.E.D. here, nice clothes, a nice apartment full of furniture–it all make me feel so good. It make me feel this high!”

A hundred feet down the road from Lorna’s childhood home lives her grandmother, Claribel Brown, age 83. She serves visitors a plate of small, sweet bananas and says that when she’s too weak to take care of herself, there are many, many relatives nearby who will step in. “All my life I took care of children,” she says. “Now they carry me.”

I report this to Lorna and ask who will take care of her when she’s an old lady. Would she never consider Jamaica? She shakes her head. “I talk to Junior about it. He already says he won’t put me into a nursing home. He say, ‘Mama, I’m going to get you the best care there is. And I’m going to check on it all the time to make sure you get it.’ ”

Then she voices a very American sentiment: “And I sure hope he don’t forget.”