A View From the Inside: Life and Death in a Continuing Care Retirement Community
Once long ago I remember hearing my mother say she'd lived long enough, and I brushed her off; now I wish I'd let her talk about it. She was in her late 80s, still on her feet, going to church, driving the car to the store, playing bridge, keeping my father's life together. If she'd said the same thing to her doctor he didn't listen to her either, for he whisked her off to the hospital to cure her cancer two months short of her 90th birthday. She died anyway from complications from the surgery. My sister and I were convinced the surgeon botched the job. My father went downhill and died one month later. I had never really thought about them dying. It had never occurred to me they wouldn't always be here.
My husband and I live now in a Continuing Care Retirement Community (CCRC), which is a residential arrangement for old folks living out the end of their lives. Here I can't avoid thinking about death because we live with it. On average, two residents die here each month, and memorial services are a regular feature of our days. Nor can I avoid thinking about the various ways life comes to an end, because the state of other people's health is general knowledge. Residents eat supper in a common dining room, and we sit with whichever friends happen to arrive when we do. I can go around the table every night and in my head name what each one is living with: pacemaker, Parkinson's disease, diabetes, Alzheimer's disease, macular degeneration, emphysema, colon cancer, chemotherapy, triple bypass surgery, pin in the hip, knee replacement, "little strokes," paralysis from a big stroke, heart disease, those little radium seeds for prostate cancer, multiple sclerosis. It's not unusual for someone to be suffering with several of these afflictions simultaneously. The hall outside the dining room looks like a parking lot with its line-up of walkers and motorized wheel chairs. For the first time in my life it comes home to me that my days are running out, and I wonder when my turn will come. I've always enjoyed very good health, yet I see my eighty-year-old body slowly losing strength and agility, and I wonder which of the various debilitating conditions might overtake me next month. Recently a friend who lives the healthiest lifestyle I know – vegetarian meals, daily exercise, meditation – was diagnosed with "Lou Gehrig's Disease."
Perhaps because we live so close to death and disability, people here seem generally at peace with both. Death is mourned, but accepted. Actually I've heard more jokes here about dying than I did before I came, but they are about death in the abstract, not the death of a friend. Disability is treated with more respect. There is admiration, even awe, for those who continue living independently in their own cottages even though they get about with difficulty or are nearly blind. When a resident dies unexpectedly, without having had to move to a room in the nursing care service, it is perceived as a kind of victory —.folks say: "at least he/she didn't have to move to the nursing wing," or "that's how I would go – if I could — but we don't have a choice, do we." But not all agree there's no choice. One friend told me she has thirty Seconal tablets her husband, a physician, gave her before he took his own life when he decided he'd lived long enough with an inoperable brain tumor. That was some time ago, and she isn't sure the tablets still are potent enough to do the job. "I should take one sometime to test it out" she says. Other friends are members of the Hemlock Society. If some of the unexpected deaths here are self-induced, no one knows. At least no one says.
And perhaps because we live with death and disability — and other old folks — a residence such as this is seen as a dreary place. In a recent New York Times op-ed piece (August 15) the author described "segregated" senior housing as. "sterile – totally lacking the vitality that a generationally mixed community thrives on." She said "The elderly are relegated to a life where they see only reflections of themselves, other older people." But in this community there is a richness of life that belies such a stereotype. We have a lively book group, a bridge group, a play reading group, current events discussions, lectures, bus trips. Last fall a busload of us spent two days in NYC seeing the new Rose Center at the Museum of Natural History and "Copenhagen" on Broadway. We have the best film program in town — current films, foreign films, golden oldies. Residents manage our library and gift shop, repair furniture in the woodworking shop, push patients from the nursing service to evening programs, read to them and play music for them in their own lounge. Single people and couples mix easily in the social life of the community. Twice a year everyone pitches in to run a giant garage sale – a source of income for the Resident's Association, and good fun, but sometimes I think its most appreciated function is providing a handy place to dump our excess "stuff" when we move in — or move on. Resident committees advise the management on marketing, on landscaping, on food service, on long range planning. A group records residents' life stories for an Oral History Project. Their growing file of documents will be a rich source for historians someday. All these activities, and I've named only a few, are generated and run by folks who live here. I like this. In some facilities we visited before we came, paid staff organized the programs – like summer camp
Fortunately, this CCRC is located in a University town, so we can attend cultural events on the campus and participate in the life of a wider community. Our residents are active in local churches and serve on boards for the ACLU, the AAUW, and the League of Women Voters. They volunteer in the hospital, the town library, and the women's resource center; they deliver meals-on-wheels, visit prisoners in the local jail, and tutor small children in the private school next door. They take classes at the University, and they bring stimulating ideas, people, and programs to our community through these outside contacts. A chapter of UNA-USA was formed by residents, and they bring in foreign scholars from the University to participate in their programs. Some of these students are from cultures where aging parents traditionally are cared for within the family, and they arrive with the idea that Americans rather heartlessly "put their parents away" in old folks homes. They are surprised to see elders here active, productive, and obviously relishing life in a community of their own.
Many residents pursue old interests or hobbies — or take up new ones for the first time – writing, painting, weaving, rug hooking. One woman who is blind in one eye and walks with difficulty started piano lessons when she first came ten years ago and is quite good now. It's a delight to hear her practice on the concert grand in the auditorium — two hours each morning — when I come through the building to pick up the morning paper. The same woman edits a weekly newsletter for us.
CCRCs have existed for many years, but are growing in numbers as demand increases from a growing elder population. They vary in size, kind, organization and plans governing costs. This one is not-for-profit, small by comparison, and modest in price. It has 148 one story cottages for independent living, 27 private rooms in an assisted living facility, and 32 more in a unit providing skilled nursing care. About 250 residents currently live here. The usual sequence for a couple or single person is to live first in a cottage, then move to the care services as physical abilities decline. Cottages range in size from studios to two- bedroom- two- bath units. Each has its own little yard, and people plant gardens however they please. Several have small goldfish ponds with water lilies. It's a treat to walk through the grounds and see different plants and shrubs come into flower as the seasons change. Members of the local garden club know a good show when they find one, and come every year for a tour. In the nursing units each patient has a private room, the floors are carpeted, everything is spotlessly clean. Patients arrange their rooms with their own furniture, hang their own pictures, bring in their own mementos, even their pets if the pets are well behaved. I've never seen a nicer nursing home.
Our cottage has two ample bedrooms, one bath, a large living room, a small but well-equipped kitchen, and a bright enclosed porch just right for my African violets. The twelve-foot ceiling is perfect for the tall case clock that has been in my husband's family over 200 years. When our children came to visit after we moved here I watched them go from room to room noting familiar items that had been in every house we lived in — Nanna's old glass-front cupboard, pictures of long-gone relatives on the wall, the china lamp that was my grandmother's. They said it felt like home. The basic floor plan for these cottages is the same no matter what size the unit, but each looks completely different when it's made into a home from pieces of a former life.
The cottages are attached in clusters, or "neighborhoods," connected by covered walkways leading down to the Community Building. Our neighborhood has fourteen apartments of various sizes. We organize pot luck picnics in the summer; we water plants for each other when folks go off on vacation; we make "buddy" arrangements to make sure singles are OK. My husband and I check each morning and know Joe is up and around if his morning paper is taken in. Sometimes on long summer evenings we sit out on benches in the center garden space and visit and laugh as the day closes down and fireflies come out. Since we moved here six years ago, four of our original neighbors have died, one who has trouble walking lives now in the assisted living unit, and three live in the skilled nursing service in various stages of dementia. One is dying there of ovarian cancer.
The Community Building is a center for community life. The main floor houses the two nursing services, the medical offices, a central kitchen, two dining rooms and a large auditorium. The top floor holds a smaller meeting room, a 7,000-book library, a needlework room, art room and computer room. The ground floor has a game room, exercise room, a well equipped woodworking shop and administrative offices. A local bank provides full banking service two days a week in a small branch office on the main floor; the mail room opens to take packages and sell stamps once a week; and a hairdresser comes to cut and style in a small beauty shop.
We paid $110,000 as a non-refundable entrance fee and a monthly maintenance fee off $1,983 when we came here six years ago. These costs rise with the cost of living. The corresponding figures today are $150,000 and $2,634. Fees are lower or higher for smaller or larger units: a single person pays less. These fees cover all home maintenance and repair, one dinner meal a day for both of us, and weekly house cleaning. They cover transportation to the bus station and airport, to medical appointments, to the local hospital, and to the medical center 70 miles away. Residents are required to carry Medicare and a supplementary health insurance plan, but beyond that all health care costs are covered, including prescription medications.
These costs may seem high, but they are balanced off by a number of advantages. A portion of the fees — generally from 35 to 40 % — is deductible for income tax purposes (as medical expense). A second major benefit is that if we need to move temporarily to the nursing service, while recovering from an accident, for example, or from a hospital stay, we have that privilege at no extra cost. The fee does increase when a resident moves permanently to the assisted living or the skilled nursing service, but the increase amounts to a fraction of what the same care would cost otherwise. In other words, our contract includes a form of long term nursing care insurance. Another cost savings is the expense of a second car, and down the road (when we should not drive) we will manage quite well by depending upon support services here and very good public transportation.
Aside from these financial considerations, there are benefits that cannot be measured in dollars and cents. Help always is available in an emergency — one has only to phone the medical service or pull the emergency cord in the bedroom or bathroom. One night on a weekend my husband suffered a breathing emergency, and a nurse was at our door five minutes. And all of us agree that one of the nicest unexpected bonuses is having "the office" take care of the paperwork connected with medical care billing. All the pesky statements for tests, services, specialists, medicare, supplementary insurance, and those "this is not a bill" things, go in the box by the mail room and the office processes them. This paperwork is so voluminous and so complex that I wonder how older people living on their own, possibly growing confused, ever manage to cope with it.
I first heard about CCRCs 20 years ago when a longtime friend entered one and took me to see it. I immediately saw this as an ideal plan for my husband and me — folks to have supper with, the burdens of housecleaning, cooking and home maintenance taken away. My husband was not so sure, but I badgered him into signing a contract; after all, the three-year waiting period until we could get in would give both of us plenty of time to work it out. But when entering time approached he froze and it was clear he was not ready to make such a move. We found another CCRC in the planning stage, got our deposit money back, put it down once more, but three years down the road he again found multiple reasons to back out. It took two more contract signings and another three-year wait before we finally moved into the fourth facility we considered seriously. During these years we visited more retirement communities than I can count, and we argued — bitterly. The difference between my husband's view of how we should spend our last years and my view put more stress on our marriage than any other disagreement we'd had in our more than fifty years together. Even now it sits there between us. I am happy here; he has adjusted. He says it makes sense to be here now that his emphysema saps his energy and requires frequent medical attention, but he still grieves for life in the home and town he loved. He would return to it if he could.
I assumed our vacillating and our conflict over moving here were peculiar to us, but find other couples had similar experiences. Entering a facility such as this is not easy. I suspect it's symbolic — represents moving from one stage of life to another (final) one. It can mean gaining freedom from responsibilities that have become burdensome, but it also can mean losing power, forfeiting control over matters previously your own — what is being served for dinner, whether or not to paint the front door purple. I suspect this generally is harder for men than for women. When we were kicking around this decision, my husband asked what I would do with my collection of wonderful recipes, and I told him I'd just throw them in the garbage. He looked at me as if I'd lost my mind.
I can see this CCRC as a special type of Goffman's total institution ( "Asylums"). A person moving into a cottage gives up a measure of autonomy. He or she has to learn the ropes, how to become a "good resident," conform to community rules. It also seems to mean giving up a measure of former identity. The sameness of the cottages leaves little chance to show off indicators of former material success. I may know what illnesses people suffer from, but I have little idea who is financially well fixed and who is not. I've also been struck by how little former status counts. By some unspoken norm, former prestigious achievements are seldom mentioned. I'd known several friends for years before I learned one had been President of the American Library Association in his professional life. Another had written definitive texts on calculus. A woman loved for her lively spirit on party evenings had danced with Martha Graham in the 1930s. Her husband was an early pioneer in NBC's television project that "began broadcasting in July 1936"! and was executive director of the Metropolitan Educational Television Association in NYC. But I didn't learn that until I read his obituary in the local paper. I'm only now finding out that a number of women have Ph. Ds, but it doesn't seem to matter. People are esteemed not for what they did before, but for being fun to be with now and for giving time and energy to community projects.
The attributes of the total institution become more apparent in the assisted living facility of the CCRC, where more control is gradually assumed over aspects of the patient's daily life, and finally in the skilled nursing service where, by necessity, patients have little contact with the outside world and members of the staff have complete control of their world. I volunteer as a helper in the skilled nursing service. I help feed wheelchair bound patients who no longer can lift spoons to their mouths. It is heartbreaking to see their physical skills slipping away one by one, the very skills we cheered when our toddlers once mastered them: walking alone, feeding one's self, making one's self understood with words. By now the symbols of adulthood, car keys and checkbook, have long since been taken away. It is heartbreaking to see these once vital adults treated as we treat a child: wheeled about in a chair, spoon fed, lifted onto the toilet, ultimately diapered. Many slowly lose the capacity to communicate, and we speak with them as we speak with children, supplying words, interpreting gestures.
It is not death I fear, but the possibility I might live out the final years of my life like this, completely dependent. Once when I still was teaching, I held a workshop on aging for women in their 50s and 60s and asked them to write what fears they had about growing older. More often than any other "fear," more often than the fear of not having money or of losing attractiveness, they wrote "becoming dependent on others," "being a burden ." If I ask people why they chose to come here they give the expected reasons: security, good health care. Then almost invariably they add: the desire to relieve their children of the burden of caring for dependent parents.
But knowing all the positive functions of CCRCs, I cannot ignore the downside. I am increasingly disturbed by the realization that we are a privileged population that must consume per capita a far greater proportion of the world's resources than our fair share and that the drug industry/health care complex is making outrageous profits from life-care for seniors. We get such good medical care in these sheltered communities that we live longer to consume more of this good care. The average age of residents was seventy-eight when we came six years ago; now it is over eighty-three. Almost everyone here takes an array of (increasingly expensive) prescription medications to sustain these lives. We are sent regularly for MRIs, colonoscopies, mammograms and other increasingly expensive tests. Medicare and supplementary health plans pay most of the bills, but the bills are enormous; meanwhile we read that poor people and the uninsured have inadequate or non-existent health care. And inadequate child care. Why does an eighty-five-year-old woman need an annual mammogram when research shows that breast cancer found at this age probably is slow growing and not likely to kill? Will the new stem cell research lead to even more costly treatments to prolong our lives even further? At what point is it possible for us as elders to say "enough"? Enough of the medicines, enough of the testing, enough of the good care. Even enough of the food. To say, as my mother did, I've lived long enough.
Datha Clapper Brack is a very early member of SWS. Read her autobiography, "Writing Papers and Stirring Soup," Chapter One in Ann Goetting and Sarah Fenstermaker (eds.), Individual Voices, Collective Visions: Fifty Years of Women in Sociology. Philadelphia: Temple University Press, 1995.
