Last year, without warning, a close friend and gifted writer committed suicide. She was 75 and affluent, facing major surgery, a wheelchair, permanent incapacity; she declined that new life as unambiguously as she could. Several nights later, still raw from the news, I received a letter from the hotel-turned-assisted-living-facility--let us call it Shangri-la--where my 76-year-old divorced mother and her 88-year-old widowed sister live. They share a single room in a modest suburb of New York City. "Your aunt and mother's lease is due to expire on August 31, 2000," the director of admissions wrote. "We are pleased to offer them a renewal of their lease. Please note, there is a 5% increase over last year's rent. The new rent will be $3,780 per month."
Please note, my mother and aunt have no idea how much Shangri-la costs. The times I have mentioned it, they have been flabbergasted. But a minute later, they cannot remember the number. They are sociable, spry, eager participants in the cruiselike flurry of events and entertainments that fill their days, but there are craters in their memories and their cognitive abilities.
Their Social Security paid for a little less than half of their expenses in 2000; their lifetime savings paid the rest. I am their money manager. When they run through their funds in several years, they may have to go to a nursing home as Medicaid patients, if they can get into one. Then the government will pay about $300 a day for each of them. If they stay at Shangri-la, the government will pay nothing, even though it's cheaper than a nursing home. I would like to move them to one of the few subsidized assisted-living communities for people with low and middle incomes, but because of the demand and rigid eligibility requirements, I am not sanguine about the possibility. My sister and I have neither room for them in our small apartments nor the money to keep them indefinitely at Shangri-la. My mother can no longer understand directions on a bottle of pills. Yet when she asks if I am going to have children, and I remind her that I am 45, divorced, and not interested, her answer leaves me speechless: "But who will take care of you when you're old the way you take care of us?"
I mumble something about my boyfriend's young daughter, and she is comforted for as long as she can remember. But the truth is, I have no idea. Like most of my fellow 77 million baby boomers, I would rather not dream so far into the future, though questions have begun to gnaw at me. Where might we live when we need bathtub grip bars and someone to tell us when to take our Prozac, when it is problematic to live alone but before we become severely incapacitated? Will the country be strewn with Shangri-las and their stylish, Dean-and-DeLucafied offspring, tailor-made for the "bo-urgeois bo-hemians" David Brooks mocks in Bobos in Paradise? Will the Hyatts and Marriots of today, which have captured a chunk of the luxury assisted-living market, have put all their competition out of business in time for our twilight years? And where in the world will everyone else live--those who can't afford the top of the line or much of anything else? Might Motel 6, like its posh counterparts, move into housing seniors?
With the increase in prosperous seniors during the past 10 years, assisted living has become a popular, though costly, alternative to living alone or to nursing homes for those who can no longer manage a household. Without federal regulations or uniform definitions, numbers are imprecise, though the funding sources are not: It's every senior for him- or herself, with almost no help from Medicaid. Consumer Reports claims that "500,000 Americans live in places loosely called assisted-living facilities"; the Assisted Living Federation of America believes that a million dwell in some 30,000 facilities. (The more reliable figures for nursing homes put about 1.5 million frail seniors living in some 17,000 nursing homes, with Medicaid picking up the tab for 68 percent of these residents.) All agree that there is a great need for more affordable assisted living; seniors with incomes below $30,000 a year outnumber others by two to one. The 6.5 million low-income seniors who need day-to-day assistance--most of them women--have a higher prevalence of frailty than the more affluent.
As we boomers consider where we'll grow old, we'll need first to look at the larger question of how. If the prevailing American dream for our parents was to retire to the Sunbelt and play golf, today that aspiration is just one of many possibilities. Gerontologist, psychologist, and elder-care consultant Lenise Dolen has observed that some people now retire and relax for a few years in the old-fashioned way before training for a second or third career. She predicts that senior centers of the future will be places for educational and vocational retraining. By the time we reach old age, it will be a different country than it was when my robust grandfather was forced to retire from his traveling-salesman career at 65 and then went on to work for the family business until he was 89.
In 1958, when youthful Muriel Spark published Memento Mori,, a classic of geriatric literature, old age meant isolation and shame. These days, with climbing longevity rates, the golden years are, for some, high time to start a new family, as John Updike's Jewish alter-ego does in Bech at Bay and as octogenarian Saul Bellow recently did in real life. But even seniors who are not literally spreading their seed are being fruitful and finding inspiration in the lives of John Glenn, Jimmy and Rosalynn Carter, Gloria Steinem (who married for the first time at age 66), and the artists, composers, and more ordinary elders described in psychiatrist-gerontologist Gene Cohen's recent work The Creative Age: Awakening Human Potential in the Second Half of Life and in Marc Freedman's Prime Time: How Baby Boomers Will Revolutionize Retirement and Transform America. Freedman promotes the idea of "transformed retirement" in the examples of men and women who devote "the next third of life" to community and volunteer work and to new pursuits in which the experience itself--being a physician's assistant, for example--is more important than the prestige or the paycheck.
At a recent conference hosted by New York's International Longevity Center (ILC), the center's president and CEO, Dr. Robert Butler--an ardent, soft-spoken, 73-year-old dynamo--pointed out that America is becoming a "gerontocracy": that in 30 years we will have the same proportion of population 65 and older--one in five--as Florida does today. One bit of evidence that we're heading in this direction is the extraordinarily high membership of AARP. With its 32 million members (median age: 64), AARP publishes the country's highest-circulation magazine, Modern Maturity (which has 20 million readers and commands up to $270,000 per advertising page), and has just launched a boomer-friendly version, My Generation, for AARPies closer to 50.
But according to Robert Blancato, an activist and lobbyist who's been involved in national aging policy for 20 years, boomers may not join AARP, or any other group, the way their parents did, if his experience is any indication. In 1998 he founded Boomer Agenda, which he just disbanded for prospective members' lack of interest. "We surveyed a few thousand boomers on long-term-care insurance, age discrimination, privacy," he said. "They cared about the issues but didn't want to join an organization." With baby boomers at the helm, with cultural icons like Steinem, Ram Dass, and Hillary Clinton--people who understand that the personal is political, that private life easily becomes public, and that we have the capacity and longevity to reinvent ourselves any number of times--old age seems poised to become a period associated with liberation, innovation, the next cool thing: a sort of Woodstock Nation redux.
Except, of course, we won't want to thrash around half-naked in the mud anymore. We will need somewhere to live or some kind of help when we can't do it all ourselves; and in this area, too, we will be doing our best to rewrite the rules. Not only are we more highly educated than any previous generation, but we are more exacting consumers. By the time we need help getting around, most of us will have been exposed, in taking care of our parents, to the wretched current system--or nonsystem--of long-term care, "which means impoverishing and institutionalizing our elders if they are to receive any kind of public support," as author Trudy Lieberman (with the editors of Consumer Reports) explains in the Complete Guide to Health Services for Seniors.
The best-case scenario is that our numbers, our savvy, and our needs will translate into political power that can bring about major change. Given the predictions about the coming insolvency of Social Security, Medicare, and Medicaid, major change may consist of simply finding a way to fund these programs at levels that will support elderly baby boomers. Radical change could include fixing them so that the system provides what's known as "a seamless continuum of care," instead of what Lieberman calls the current "fragmented, inhumane system of care that is a nightmare to navigate."
It's daydreaming to envision universal medical coverage or even a comprehensive social-insurance or pension policy for the elderly in the United States. Although several developed countries, including the United Kingdom, Germany, and Japan, have impressive home- and community-based services for long-term care, the United States has made no real effort to emulate their programs. Not surprisingly, in our era of bottom-line legislating, a country that lacks the political will to protect 44 million of its inhabitants without medical coverage has taken no bold steps in this direction. The distance we have yet to travel in even thinking about long-term care is encapsulated in a statistic Dr. Butler of the ILC often quotes: In our 126 accredited medical schools, we have three departments of geriatrics, while every medical school in England has its own. Why do we give the elderly such short shrift? Time, money, and prestige. They are labor-intensive to treat, Medicare reimbursements are slender, and no one is going to discover a cure for old age. In the face of such systemic obstacles, elderly baby boomers may continue to do what's currently being done: tinker with federal programs and make piecemeal improvements.
Echoing UN High Commissioner for Human Rights Mary Robinson's assertion that old age is a human rights issue, Dr. Butler warns of the potential for displacement, suffering, and widespread poverty among elderly baby boomers ill prepared for their old age. One recent trend touted as a positive development for seniors who own property and have assets to protect is long-term-care insurance. It is endorsed in certain circumstances by a wide array of organizations--including AARP, which sells policies, the National Alliance for Caregiving and United Seniors Health Cooperative, which do not, and Consumer Reports. Age guru and best-selling writer Ken Dychtwald believes it should be part of a family's long-term financial planning. As president, Bill Clinton recently made it available to be purchased by federal employees.
Still, long-term-care insurance remains controversial, both as an insurance product and as an investment. It is expensive and asks you to pay for a benefit you may not need for 30 years--a nursing home, a home health aide, assisted living. And in 30 years, when you need that benefit, it may be called something else and your policy may not cover the service under its new name. While you can purchase a policy that has inflation protection, you will pay a higher premium. I have heard stories of brokers so eager to make a sale that they sell someone a policy without inflation protection; when the benefit is needed--20 or 30 years later--it may be worth a fraction of what is necessary.
"It's not a scam," said Ron Pollack, executive director of Families USA. "It's just not a good buy." When I asked him why so many senior organizations and advocates encourage it, his heartbreaking answer spoke to the paucity of choices before us: "What else can they say?"
The issue of long-term care is so deeply enmeshed in almost every aspect of life--from our spending, savings, and eating habits to our day-to-day dealings with our aging parents--that imagining how and where we might live 30 years from now is a dizzying prospect. But as we begin, tentatively, to envision these brave new worlds, there are four general housing and social trends to bear in mind.
1. People want to stay home rather than move to an institution. In a May 2000 AARP study of people 45 and older, the vast majority--82 percent--said they would rather not move from their current home if they were to need help caring for themselves. Only 9 percent would prefer "moving to a facility where care is provided," and only 4 percent to a relative's home. It's a good thing that most would choose to stay put: If worst-case scenarios come true, baby boomers will have reduced access to Social Security, Medicare, and Medicaid, and the least affluent may have to find ways to stay safely at home. In senior-housing jargon, staying home in all of its forms is known as "aging in place." Either people fix up their houses to make them infirmity-friendly or, if they are well-to-do and don't mind planned communities, they relocate before they become frail and move to one of a growing number of continuing-care retirement communities. Residents pay a hefty entrance fee in addition to monthly maintenance ($1,500 to $5,000) for housing that accommodates their needs at every stage. They begin in an apartment and move when necessary to the assisted-living wing, then to the nursing wing. It's expensive and becomes even more so when an elderly couple's needs diverge and they are paying for both an apartment and a bed in the nursing wing.
A house retrofitted to infirmities is known as a "smart house." Many observers, including consultant Lenise Dolen, believe that smart houses as well as food-delivery services and chore helpers will change baby boomers' frail old age to a stay-at-home proposition. The huge demand for these services will make them affordable. We might also see an increase in community-based "adult day care" services or community-based home help.
In creating smart houses, innovation is coming from both sides of the Atlantic, with the English excelling in charm and the Americans in efficiency. "A Smart House for People with Dementia," a project of the University of Bath, is a real model house in Gloucester, England, outfitted with computer-driven household systems that issue warnings ("Don't forget, you've left the bath running, Mum"), locate lost objects (pressing an image on the computer pad will make the object warble until you find it), and turn on lights when you get out of bed at night. In a suburb of Portland, Oregon, a new assisted-living facility--Oatfield Estates, run by Elite Care--has incorporated institutional versions of these concepts to help rather than replace human staff members; some residents are even hooked up to electronic locating badges. The pioneering owner, Bill Reed, who was influenced by seeing how his mother had taken care of her mother in her later years, seems to understand that his community is something of a work in progress and that there are complicated challenges in meshing the wonders of technology with human needs for care and attention.
Alan Solomont, a prominent Democratic Party donor who for decades was a leader in building nursing homes and assisted-living communities in Massachusetts, now finances HouseWorks, a smart-house company in Newton, Massachusetts. "We're used to taking people to services they need, but now that the era of big government has begun to wane, we're trying to reverse that and take the services to the people," he said. "I don't know a family that isn't struggling with this issue. The most important thing our country can do now is to recognize that long-term care is an issue and that there is not a big safety net to jump into."
2. Medicaid supports alternatives to nursing homes for poor people, but at pitifully inadequate levels. Since 1981, Medicaid, the federally funded and state administered health agency for the indigent of all ages, has allowed states to apply to the Health Care Financing Administration (HCFA) for what are called "Medicaid waivers," targeted, small-scale exemptions to the rule that Medicaid will pay for indigent care only if the beneficiaries are in nursing homes. Individual states, which must get approval from their legislatures, petition HCFA to provide certain services (such as home health aides, adult day care, transportation, and minor home modification) to a specified number of people, hundreds or several thousand, in a specific population--elderly, disabled, or mentally ill. (To be eligible to participate in a Medicaid waiver program, individuals must meet the same criteria they would for Medicaid to pick up a tab in a nursing home: They must be frail and have no more in total assets than $2,000 to $3,000, depending on the state, not including Social Security payments.) If approved, the states administer these programs for three- to five-year periods. All states currently have Medicaid waiver programs; 37 states have waivers that offer aid to the elderly poor for assisted living. Sadly, Medicaid waivers nationwide are helping only about 60,000 poor seniors to live somewhere other than a nursing home, while every year Medicaid pays the nursing home bill for 68 percent of residents: an average of $56,000, for about 1.02 million people.
The Medicaid waiver program is so modest for two reasons. First, the nursing-home industry depends on Medicaid reimbursements for most of its income and is threatened by anything that directs money elsewhere. (Some traditional nursing homes have minimized the blow from the surge in assisted living by converting properties and getting into the business themselves, though the absence of regulation makes it impossible to monitor the extent and quality of these efforts.) Second, state administrators, whose Medicaid waiver programs must be "budget neutral," keep programs small for fear of the potential "woodwork effect": Poor people who would otherwise not choose a nursing home might swarm out of the woodwork if they knew they could get Medicaid funds to help them stay safely at home--and budgets would soar.
Yet in states where waivers exist, some have saved the state money and kept people where they want to be: at home. According to the 7,000-member Assisted Living Federation of America, Oregon's waivers saved the state an estimated $227 million between 1981 and 1991, from a projected expenditure of $1.35 billion. Maine reduced total long-term-care spending from $228 million in 1995 to $185 million in 1998 and served 3,700 more people.
Again, the question for baby boomers will be whether we reinvent the hydra-headed monster that Medicaid has become or continue to allow our poorest citizens--and their caregiving families--to be subjected to the systemic indignities, inequities, and corruption of these programs.
3. Other government programs are being adjusted to meet the housing needs of the poor and low-income elderly. Again, the United States is taking baby steps toward addressing an overwhelming nationwide need for affordable assisted living. In December 2000, Andrew Cuomo's Department of Housing and Urban Development (HUD) announced a new, $50-million effort--the Assisted Living Conversion Program--to convert subsidized housing for poor seniors into affordable assisted-living space. One wants to applaud any efforts in this direction, but $50 million is hardly a resounding display of federal commitment. Since its founding in 1959, Section 202--the only federally funded housing program specifically designed for seniors--has supported the construction of more than 300,000 individual units in 5,000 housing complexes. But new building has tapered off over the past 20 years, falling from around 15,000 new units annually in 1981, when Ronald Reagan took office, to a projected 6,500 this year. (Poor seniors are also eligible for Section 8 housing, a voucher program administered by HUD, but such assistance can only help defray costs and does not address the needs that may go along with aging.)
Bush administration policies don't inspire hope that the Assisted Living Conversion Program will flourish. Even a partial list of the facilities lucky enough to get grants last year suggests the depth of our nation's collective denial about this problem. One subsidized housing project in New Haven, Connecticut, was awarded $4.2 million to convert or modify 33 apartments; another in Jacksonville, Florida, received $2.7 million to transform 36 apartments into assisted-living units.
Positive news is largely restricted to the local level--and measured in two- and three-digit numbers. A builder of relatively upscale senior residences in Michigan has been an innovator at using federal and state programs in tandem to keep diminishing funds from forcing some of his state's seniors out of assisted-living facilities and into nursing homes. J. Robert Gillette, the president of American House Senior Living Residences, has built 27 senior-housing facilities in metropolitan Detroit; costs for building six of them were subsidized by federal and state tax credits that require a certain percentage of units be rented to low-income tenants at below-market rates.
In addition to the tax subsidies--through the federal Low-Income Housing Tax Credit program and the Michigan State Housing Development Authority--Gillette has incorporated Medicaid waiver programs that help 160 poorer residents pay for housework, meals, dressing, and medication reminders. Because of the size of his operation, Gillette is in a position to have some of his residences subsidize others whose profits are not as high; but he is also willing to reach out creatively to people who need help.
Though the federal government's overall approach to long-term care hasn't changed much since 1965, Gillette and others have taken advantage of the several highly technical tax-credit and financing programs geared toward developers and local governments, rather than consumers, to help bring more affordable senior housing to the market. Such federal initiatives include the Low-Income Housing Tax Credit program, the HUD-FHA 232 Mortgage Insurance program, the Federal Home Loan Bank program, the HOME program, and the HUD Community Development Block Grants. But again, the challenges of coordinating these limited and disparate programs with other public and private funds militate against large-scale changes.
4. Baby boomers are beginning to create their own unique assisted-living communities. Writer Vivian Gornick has spearheaded an ambitious project, still being developed, that would allow women in the arts to age in place once they have moved to a desirable place in which to do it. Gornick's nonprofit organization, the House of Elder Artists, aims to build a 100-apartment building in New York City, a project she described in an interview as a "senior residence for women in the arts in which we can go on living and working until the end of life." She envisions a set of public rooms--dining and living rooms--where residents will give lectures, hold readings, and show artwork. "The most important thing," she emphasized, "is to keep a working mind alive, not to play golf or bingo."
If Gornick's project exemplifies the philosophy of "productive aging" (continuing to achieve and extending work life), another innovative senior-housing project in Santa Fe, New Mexico--primarily for those with low and limited incomes--very openly follows the "conscious aging" movement (seeking spiritual growth and talking openly about aging and death). Artist Geoffrey Landis and psychologist and educator Stefan Dobuszynski, both community activists, are working toward building Jubilados. (Spanish for "those who have joy," jubilados is a term used in Central and South America for "retired people.") The project is based on Buddhist principles of interconnectedness and respect for the earth. Landis and Dobuszynski plan for the 128 units, on 13 acres of arable land just outside Santa Fe, to include a meditation hall, health care unit, and hospice, to house up to 160 people, and to be open for business in 2003. Expecting to attract residents who have devoted their lives to social activism and spiritual development rather than to amassing money, they also anticipate that 30 percent of the residents will be nonelderly individuals. As a nonprofit corporation, they are seeking funding from foundations and government financing programs, including some of those mentioned above.
It's hokey to talk about revolution anymore, but as baby boomers grow old in new ways, we might initiate another one to add to the sexual revolution, the women's movement, and our explorations in cyberspace. We'll have longer and healthier life expectancy than any previous population, and we're slated to add seven or eight years to it by 2030. Though we won't have as many children or spouses to take care of us as our predecessors did, we'll have had a lifetime of practice taking care of ourselves. And we won't all be heading for Florida or Arizona.
But what must be done to spare ourselves the same future that makes so many of our parents' later years a nightmarish tangle with dysfunctional bureaucracies? With only one in three or four seniors able to afford appropriate care now, and with a widespread perception that the elderly are reaping more than their share of the social-welfare bounty, we are getting a taste of the conflicts that will come on a much larger scale. To minimize the pervasive poverty and hardship that Dr. Butler and others predict, Medicare, Medicaid, and Social Security must be reinvented for the twenty-first century. President Bush and Congress ought not rush to "return the people's money to the people." The rest of us, individually, should start stockpiling savings. Collectively, we'd do well to take the standard advice given to addicts: Admit that we have a problem and ask for help.
One of the cruel tricks of life is how fast it seems to go by; how young we often feel and how old we look in the mirror. I joke with a friend that when we move to Shangri-la ourselves, her room will be bigger than mine. Her answer makes me laugh and cry: "And we'll be there in two minutes." I will blink a dozen times and be 60, but what a long, long way our country has to go to begin to address the crushing, hugely complicated problem of how and where the elderly should live. "The biggest surprise that comes to a man is old age," said Leon Trotsky, whose views are out of favor these days. But the biggest surprise coming to millions of baby boomers is how complicated and costly it is to be old in America--and how soon that is going to start to matter to so many of us.