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By Lucette Lagnado SOUTHAMPTON, N.Y. - Days after a February blizzard, Virginia Lawson sat by her living-room window and surveyed the drifts that made her a prisoner in her home. Nearly two feet of snow fell but no one came to shovel her driveway, she recalls, and the woman who helps her with chores didn't make it to work. The streets emptied and neighbors on either side were gone. Her only son lives in Boston. So Mrs. Lawson, who is 96 years old, took a shovel and began clearing a small passage to her door. "The snow was very soft. I don't lift it, I simply push it," she says. "Somebody could come to see me, and they would need a path." Wearing her usual worn sweatshirt over sweatpants, her white hair in a self-styled pageboy, she then went back inside, plopped into her favorite armchair, and waited for the visitors who never came. As Americans live longer, a rethinking of widely accepted notions about the elderly is under way. It ranges from when a person must retire (does it make sense to stop working at 65 when you could live to be 95?) to where people should live if they become incapacitated (does it have to be a nursing home?). Central to this thinking is a shift toward helping elderly people who want to stay in their own homes and communities, even if they are alone. For 40 years, federal funding decisions have been tilted toward putting old people into nursing homes -- a last stop that many fear. But now that is changing, driven both by cost and longer life spans. Top federal officials say the system needs to reform. Vermont has begun offering seniors the choice of care in their houses and has even been paying family members to look after them, as alternatives to institutional care. Several states, including New Jersey and Texas, now have programs that take elderly residents out of nursing homes and help them move home again. In Georgia, a project called Aging Atlanta aims to make it easier for seniors to stay in their homes by, for example, paying their car fare when they need to go out. The way America cares for its seniors dates back to the creation in 1965 of Medicare and Medicaid, the federal and state programs that insure the old and the poor. Over the years, these Great Society programs pumped billions into institutionalizing the aged -- a flow of money that transformed the U.S. landscape. A powerful nursing-home industry sprang up, while hospitals also received lots of federal dollars. But less thought and funding went to other options that could improve the quality of life for those living much longer. In- home health-care aides could help some people stay in their homes, while more local outreach, transportation and visitation programs could ease the intense isolation of many seniors. From 1975 to 2004, Medicaid spent about $600 billion on long- term care of the elderly, with nearly 90% going to institutions, according to an analysis by AARP, the big advocacy and research group for older Americans. Over the same time, in a marked shift, other groups, such as people with mental, physical or developmental disabilities, were moving out of institutional settings, in part because they and their families have pushed for them to live at home. The flow of federal funds to institutions led to "medicalizing" old age, says Fredda Vladeck, director of the Aging-in-Place Initiative at the United Hospital Fund, a New York philanthropic and research group that studies health issues. "We keep talking about long-term care," she says, when "we need to be talking about long-term living." Certainly, many seniors need the kind of care that only a medical or supervised setting can allow. But advances in drugs and technology are making it possible for people to remain healthier, and live independently, much longer. In 2000, there were 4.2 million people 85 or older, up from 3.1 million a decade earlier. Their ranks are expected to grow to 6.1 million by 2010, according to the Census Bureau. Some marketers and developers are betting that as baby boomers age, they will demand more choices, opting for upscale retirement communities. But Elizabeth Clemmer, associate director of AARP's Public Policy Institute, says surveys by that organization have shown otherwise. "Builders think the baby boomers will want to live on golf courses," she says. "We have asked people where they want to grow old. They say they want to stay where they are, in their own homes." Mrs. Lawson is determined to remain in the home where she has lived for decades, with its old handmade curtains, careworn furniture and wood-burning stove. "It is my little heaven," she says. From her armchair, Mrs. Lawson says she is content, sitting hour after hour, day after day, with little more to do than watch the birds that pause at the feeder in her yard, or the deer that arrive in the evening. She spends much of her time ruminating about the past. By now, nearly all of Mrs. Lawson's friends are long dead, and she has almost no company, other than her home-health aide. She has been a widow for 40 years. Until a few years ago, she could walk to the ocean or board a senior van that took her to shops. But that is no longer possible as she has became more frail, physically as well as mentally. Six hours away in Boston, Evan Lawson, 62, founding partner of his own law firm, tries to respect his mother's desire to be on her own, despite serious concerns at times about her well- being. There is, for instance, her declining memory. Her unsteady gait puts her at risk of falling. It would be more convenient for him if she lived near Boston. And there are other temptations - - real-estate agents who barrage him and his mother with offers for her property. The Hamptons, a series of towns on the east end of Long Island, have become some of the nation's most sought-after communities, with hundreds of multimillion-dollar mansions. With each year, Mr. Lawson has taken over more aspects of his mother's life: managing her finances, obtaining power of attorney, hiring an aide. He says he realizes he was lucky that she was healthy through her 80s, and still doesn't require a single medication. But he knows he may need to take another course if she declines dramatically. He has considered assisted living or nursing homes for his mother. "But I know that she'd be really unhappy, and I know that she'd deteriorate," he says. "It would never occur to me to do what she wouldn't like so I would worry less." The woman who still wears on a chain around her neck the gold Phi Beta Kappa key she earned 75 years ago, disdains the idea of living in the kind of places many seniors do. "Nursing homes? Oh my God, don't mention them," Mrs. Lawson says. "I'd rather die alone than have someone tell me what to do." As for the more independent route of assisted living, she is just as adamant: "Never. I would rather die than go. I don't want to be with old people," she says. "I want to be with young people." Born in Astoria, N.Y., in 1909, Mrs. Lawson graduated with honors from New York City's Hunter College, Class of 1930, with a math major and physics minor. She then earned a master's in math at Columbia, and later became a teacher. As for senior centers that could offer her social activities while she still lives at home, she has no use for them either. "Bingo is for morons. They should outlaw it," she says. "Is that the best they can do?" Financial reality could hasten changes in the way families deal with aging relatives. Researchers at the University of California, San Francisco last year compared the cost of different ways of caring for about 530,000 elderly people on Medicaid. Their conclusion: Medicaid saved an average of $15,000 a year for each person who received care at home, instead of at a nursing home. Yet the bulk of spending goes to institutions. A Congressional Budget Office analysis in 2004 found Medicaid spent $36.5 billion on institutional care for the aged, compared with $10.8 billion for home and community care. In other words, 77% went to institutions, while 23% went to supporting the elderly in their homes. Under federal rules, poor seniors who qualify for Medicaid can automatically get nursing-home care -- but if they wish to remain at home, it is more complicated, with the state needing to apply for a waiver. "We have a system that was developed 40 years ago and that we need to reform," says Mark McClellan, administrator of the Centers for Medicare & Medicaid Services. "We have to have payments in Medicare and Medicaid that move away from supporting institutions to supporting individuals." Dr. McClellan says, "If you were designing Medicaid today, you would have to get a waiver in order to be in an institution." Some changes are under way, he says. Under a new law, with provisions that will go into effect next year, states will be able to give the federal government a detailed plan on how they want to spend Medicaid money. Once they have approval, states can use the funds to provide community services, in-home aides or other care. It is a major step, agency officials say, in making it easier for the elderly to choose where they want to live. Susan Feeney, spokeswoman for the American Health Care Association, a nursing-home trade group, says the industry has "long supported" the idea of choice. But she says home care isn't always the best or least-expensive alternative. "For someone who requires a couple of hours a day of a visiting nurse or personal attendant, staying in their home is most likely to be the best option," she says. But in cases where a person requires extensive care, "it could be more cost- effective and appropriate to have them in a nursing facility." Mrs. Lawson first came to the Hamptons in 1950, and soon urged her husband to buy a house on three acres, within walking distance of the ocean. The price was $3,500, she says. The parcel is now valued in the millions, local developers say. When her son was a boy, she stayed at home with him rather than taking a teaching job. "Yes, I spoiled him," she says. "I was with him every moment." When he went through teenage rebellion, letting grades slip and frequenting pool halls, she was tolerant. "I never interfered with what he wanted to do," she says. "I wanted him to be free." Now, the roles are reversed. If Mr. Lawson has tried to let his mother live on her own, he says it is perhaps because she was so tolerant with him. But he must constantly weigh her desire to be left as she is against the question of safety. When he removed an old rug to prevent her from tripping, "she was quite angry," he recalls. He met with similar objections when he took away some broken-down furniture. "I liked my old stuff," she says. Until she was about 90, Mrs. Lawson was a visible member of her community. Over the years, she belonged to the Rose Society, volunteered at the library, and directed plays. Mr. Lawson, who is married and has four grown children, has thought of moving his mother to a facility near him. "She adamantly didn't want to move to Boston," he says. At age 90, "after she gave up driving, we talked about it," he says, "but she still did not want to give up her place." The stakes were raised dramatically two years ago when Mrs. Lawson locked herself out of the house. Faced with the prospect of a night outside in October, she grabbed pillows from the patio furniture and used them to cover herself. "I didn't feel the least bit frightened," she says. "It was nighttime, so I wasn't going to bother" neighbors. She slept outside. The next day, she was rescued by a neighbor who went to check on her. "I found her wandering around the yard," recalls Judy Johnson, whose late mother was a good friend of Mrs. Lawson. "She was perfectly OK, but upset to think she had locked herself out." To her son, the episode was a wake-up call. "That was the first time she had demonstrated a real lapse," he says. He was convinced she couldn't live by herself any more. Intense haggling ensued, he says, to get her to agree to have an aide. She ended up becoming friendly with her first aide, who left several months ago to have a baby. Mrs. Lawson says she enjoys the company of her new aide, who does housekeeping chores, chats with her and occasionally takes her out. The aide declined to comment. Many times, the two sit side by side, watching television or the birds. Mrs. Lawson insists on taking care of herself, taking a sponge bath every morning and washing her hair. A child of the Depression, Mrs. Lawson has always been frugal. She has never liked shopping, she says, and won't go to restaurants. For lunch and dinner, she sticks to cheese and bread and milk, though she loves to splurge on cookies. Her husband was a chemist, and her savings, her Social Security and a teacher's pension make her "comfortable" financially, her son says. Using her funds, he pays her bills online. While Mrs. Lawson and her successful lawyer son can afford for her to stay in her own home, many seniors can't, says the AARP's Ms. Clemmer. Those without enough family or financial resources rely on Medicaid for support, and under its rules, they are entitled to nursing-home care, but not necessarily to long-term home care. Nearly every change he tries to make with his mother is "a negotiation," Mr. Lawson says. She has resisted wearing a necklace-like alarm that would allow her to push a button to call rescuers if she fell. Her son thinks she views it as "another badge of not being what she once was. My mother won't even take an aspirin," he says. "What am I supposed to do?" Mrs. Lawson knows she's taking risks by living at home. She realizes her memory is impaired and that she doesn't walk well. But these are risks she insists she is happy to take. "I want to die here," she says. "I don't give a darn." Shortly after 9 a.m., the phone on Mrs. Lawson's table rang. Settled in her favorite armchair, she rose unsteadily to answer it, the journey from the living room to the bedroom fraught with perils. But she lit up when she heard the person at the other end, Irving Hirschberg, a volunteer for Retired and Senior Volunteer Program, a Long Island-based group. Under one of its programs, 48 volunteers call to check up on more than 400 elderly people daily. Phoning a senior like Mrs. Lawson almost every day costs about $35 a year, says executive director Pegi Orsino. The group, part of a national organization, gets federal and local funding, and raises additional money to pay bills. "Oh hi, Irv," Mrs. Lawson said, launching into a chat. Mrs. Lawson dubs it her "Am I still alive?" call. Mr. Hirschberg, 79, a retired engineer, has been calling Mrs. Lawson for 11 years. "There is no question she is the most charming person on my list," he says. He knows that for her, like many on his list, his call may be one of the few human contacts she has that day. She'll often begin by saying, "I want to die," he says, but after a few minutes, will be joking and laughing. On a recent outing with her aide to the supermarket, Mrs. Lawson was greeted by clerks like an old friend. Leaving her steel cane behind, she leaned on the cart. "Strawberries, $3.99?" she exclaimed in mock horror. "Oh, what's the difference?," she said, "I am going to be dead." A pair of sisters who knew her from a theatrical group seemed thrilled to run into her later at the library. Mrs. Lawson had been the director for 20 years, choosing the plays to perform. Afterward, she joked that the people she meets probably think: "'What, is she still alive?"' Social interactions are crucial to an older person's well being, many experts say. A 1999 study by faculty at the Harvard School of Public Health found social activity is as beneficial as physical activity in reducing mortality for an older person. Yet such meetings are the exception for Mrs. Lawson. She has stopped walking to the ocean, once her favorite activity. Most times, she relies on her aide to buy groceries. Since she says she has no use for religion, there is no church to attend. Her son worries about her isolation, but says, "That is the price she pays for living the way she wants to live." Mr. Lawson thinks he has inherited some of his mother's independent streak. He hopes to keep working for years, even "decades," he says, and has no desire to live in a retirement community. He dreams of one day moving to the Hamptons house that his mom treasures. Changes being pushed by Medicaid to support seniors in their own homes are being watched by advocates with a mixture of hope and wariness. Some are skeptical that states will move away from institutional care. Others worry that some states may try to cut corners. AARP's Ms. Clemmer, a supporter of efforts to keep elderly people in their homes, notes the experience of some people with psychiatric issues who were moved out of institutions, without suitable alternatives. "There is a residual fear," she says, over "doing it decently, not doing it solely because you can save money." Mrs. Lawson says, "I don't need people. I can build my own world." Rarely able to get to the sea anymore, she says she now conjures it in her imagination. She remembers friends from the past and speaks to them, she says. Mrs. Lawson thinks of her mother, a seamstress, and the father she hardly knew, a sculptor who died when she was 4. This month, the crabapple trees she planted with her husband decades earlier -- when there was nothing on her property -- are in bloom. "The air smells wonderfully; there's perfume on the trees," Mrs. Lawson says. "They are pink and white, and I have yellow flowers too. It looks like paradise." Crabapple trees bloom only "a couple of weeks," she notes, "but they come back, next year and next year and next year and next year -- they are perennials you know." Then, she added, with a laugh, "I am a perennial." Write to Lucette Lagnado at lucette.lagnado@wsj.com |
