Corrections or additions?
This article by Flora Davis was prepared for the March 10, 2004 edition of U.S. 1 Newspaper. All rights reserved.
Growing Old Together
For Princetonians hoping to age in place, Community Without Walls is one answer.
If anyone had told me before I joined the Community Without Walls that the organization would take over my life, I wouldn’t have believed it.
Before CWW, I was semi-retired. After a lifetime spent mostly as a magazine writer, I’d switched to doing newsletters for a couple of nonprofits. I’d eased off, and it wasn’t a full-time occupation.
Occasionally friends would mention that they belonged to CWW, and I would ask what it was, but they defined it in so many different ways that I was confused. When I finally got a clear explanation, I couldn’t wait to join: CWW is an organization for seniors who are determined to age in place — preferably in their own homes but definitely within their community — and are prepared to help one another do just that.
I had recently had a foretaste of the physical challenges older people often face when I spent the summer in a wheelchair because of a badly broken foot. I could see that someday my husband and I might need all the help we could get, and we didn’t want to burden our three grown children.
My own mother died when I was in my 20s. About 15 years ago, my father and stepmother moved to a CCRC (continuing care retirement community) when my father was in his early 80s. He was there just a couple of years when he died of a heart attack at age 84. Moving into the CCRC was a difficult transition for my father, having to move into a new community after living in the same house for 30 years, although he acknowledged that it had become a huge burden, looking after a whole house. He didn’t have any doubt the move was the right thing to do. In fact, they were on the CCRC’s waiting list for seven years and by the time they were accepted, they were relieved. The whole thing wasn’t easy for anyone. My stepmother, now 96, is still there. I, myself, would not want to move into a CCRC.
I put our names on the CWW waiting list.
Several months later we were invited to come to a meeting and learn more about CWW. And so, on a warm evening in June, 2001, we arrived at Dick and Vicky Bergman’s house in Princeton to find 15 or 20 gray-haired strangers crowded into the living room, our compatriots from the waiting list.
Dick Bergman explained to us that CWW took root in 1992 when its four founders sent a letter to about 60 of their friends. It read in part: “With the start of the fall season, many people think of a year coming to an end, and as we get older, there is frequently a bit of unease along with the falling leaves.
“What lies ahead? Will I be well enough to live as I do now, and, if so, for how long? Will I be able to stay in my own home?”
The letter went on to invite recipients to get together and discuss their unease and the possibility of creating a nurturing “community without walls” that would address the fear of old age and perhaps answer the question, “Who will be there for me when I need help?” To the astonishment of the founders, almost everyone they had invited turned up and CWW was born.
The initial impetus for the new organization came from the life experience of its four founders, all of whom were deeply rooted in the community.
The Bergmans had cared for his elderly mother during her last years, an exhausting and heart-wrenching experience, and they were determined that their own old age would be different — better for themselves and their children. Dick Bergman was a past president of the Jewish Center of Princeton and Vicky Bergman was on the township zoning board. Another founder, Roz Denard, had been the general manager of the Princeton Packet before she retired. She, too, had coped with the decline of an elderly parent. Denard knew it was going to be important to her to continue living in her own home as she grew older. It was she who drafted “the falling leaves letter,” as it became known in CWW.
Harriet Bogdonoff, the fourth founder, was a licensed clinical social worker who had counseled the elderly and their families at the Jewish Family and Children’s Service and later in private practice. She knew all too well that many seniors don’t address the issues of aging until they’re in a crisis; she believed people should educate themselves so that they can make choices about their living arrangements, for example, before it’s too late.
Community Without Walls grew rapidly. Monthly meetings brought members together to hear speakers explore issues such as health care and housing. These get-togethers made it obvious that the common image of fragile old people simply didn’t apply. Most CWW members, even those over 80, were busy volunteering, traveling, and working out. The meetings also began to build a sense of community.
As CWW accumulated more members, sheer numbers made it harder for them to get to know one another. Eventually membership was capped at 100 with new applicants consigned to a waiting list. Anticipating the need to expand, Community Without Walls incorporated as a nonprofit in 1997. That same year some people on the waiting list grew restive, decided they would like to form a second CWW group, and asked the founders to meet with them. The new offshoot coalesced quickly, and in May, 1998, the original members became House 1 and invited the newcomers to draft bylaws that would conform to those of the larger organization and become chartered as House 2. Before long, both Houses had developed new waiting lists. By the time my husband and I attended the meeting at the Bergmans’ in 2001, CWW had four houses and almost 400 members, all residents of Princeton or nearby towns.
That evening Dick Bergman walked us through the process of forming House 5. We were to choose an organizing committee and invite all our friends and acquaintances to a series of general meetings, which would be open to all until we achieved a stable membership — we could set the limit on its size ourselves. Meanwhile, we were to draft by-laws congruent with those of the other houses. Eventually, we would be chartered. By the end of the evening, my husband and I were sold on CWW.
As the newly anointed newsletter editor for House 5, I learned a great deal about Community Without Walls over the next few months. I learned, for example, that each house has its own separate steering committee and newsletter, and each has a committee that stands ready to help members in need — perhaps by providing a ride to a doctor’s office or dropping off groceries when someone is ill. House 1 also has a Chores R Us group that can be called on to do anything from programming an inscrutable VCR to changing hard-to-reach light bulbs, a daunting task for those no longer steady on their feet. Dues are $15 or $20 per year.
CWW members go to general meetings of their own house, usually held in somebody’s home. Sometimes they come away with useful information — about how to evaluate long-term-care insurance, for example. At other times, a program may feature another member, a retired professor, perhaps, discussing his or her lifelong passion for neurobiology or the poetry of Jonathan Swift. At some meetings, participants break up into small groups to explore a topic. A few times a year, all the houses get together and share a program.
Every house has generated an assortment of small interest groups — another way to foster friendships and build that sense of community. CWW is a great place for self-starters, and anyone with an idea can launch a group. Thus, some members get together regularly to go for walks along the canal; some go to the movies and then descend on a nearby restaurant to talk about the film; others meet to discuss books or read plays. Potluck dinners are popular, and one group likes to cook together: laden with ingredients, members arrive at somebody’s house and take over the kitchen to jointly prepare a meal.
Two of the longest-running groups have been meeting for more than five years to talk about end-of-life issues — in other words, aging, death, and dying. By now they have reached a point where they can comfortably discuss almost anything. “We have an indecently uproarious time,” says Sally Davidson, a member. “If there’s anything funny about end-of-life, we’ve found it.” It takes time and a small, stable membership to achieve that level of comfort and trust. In contrast, two of the Houses have each established a casual “chat room” that’s open to all members: one afternoon a week, anyone who’s interested can drop into a Princeton cafe and join the conversation.
I discovered that people are drawn to the Community Without Walls for lots of reasons, including:
1. Some are concerned about how they’ll manage if their health deteriorates. Sally Davidson of House 3 points out that our generation grew up in households that often had live-in grandparents, but today’s families tend to be scattered around the country, and both parents generally work. A grandparent who survives to a frail old age frequently needs more care than a stressed-out, middle-aged son or daughter can provide.
2. Many want to make new friends who share their interests. One man told Vicky Bergman ruefully that, “When I retired, I discovered that I didn’t have friends; I had colleagues.” Some people invest a great deal of time in the organization, delighted to be able to work with others on projects and be part of a team again; that appears to be one of the things retirees miss most. Davidson observes that for many, CWW stands in for distant family. Sometimes members spend the holidays together, delighted to share Thanksgiving dinner, for example, when they’re unable to be with their adult children.
3. Some are drawn to the fact that CWW educates members about the problems of old age. House meetings explore topics such as nutrition, sexuality, and how to cope with “senior moments” — those times when your memory stutters and words desert you.
4. The final reason for joining CWW is for the chance to work with others on some of the issues that affect older people. As a nonprofit corporation, the Community Without Walls can’t lobby or become involved in politics without risking its tax-exempt status, but it can educate and advocate. Though advocacy is of little interest to some members, for others it’s a great draw. It definitely appealed to me, a veteran of the women’s movement; I believe in community organizing.
So far, Community Without Walls has voted to take advocacy positions on just two issues, housing and the need for a residential hospice. The housing problem came up first. CWW’s goal is to help members age in place in their community. Initially, that means in their own homes, but many older people reach a point where they need to downsize: to exchange a house and yard for something smaller and easier to take care of, preferably with others nearby to help in an emergency. When seniors downsize, many, perhaps most, want to remain in the community where they have raised their children and have friends and a support network. That’s a problem in Princeton, which has low-income senior housing but virtually nothing for those who are middle-income.
In 1995 a number of CWW members joined people from other organizations to form the Coalition for Senior Housing with House 1’s Eleanor Angoff as coordinator. Those who were part of the coalition educated their houses about the issue, and ultimately the membership voted to advocate for more senior housing in Princeton.
It has been a long and sometimes bitter struggle. Princeton is almost built out and has only a few large, undeveloped tracts of land left. For years, whenever a builder proposed an age-restricted development, the neighbors immediately organized to forestall it. The coalition spoke out strongly for seniors at public hearings and then had to watch while acres of property were preserved as open space, turned into playing fields, or sold to a developer uninterested in building for older people. One CWW member noted dryly that, “We could probably get senior soccer fields in no time at all.” Meanwhile, some members reached an age where they needed to downsize and, with nowhere to go in Princeton, moved out of town.
Finally the coalition made some progress. In 2000 an assisted living facility opened on Mount Lucas Road. In 2003 Princeton approved a major addition to the low-income senior housing at Elm Court, and the township passed ordinances intended to encourage developers to build middle-income senior housing on two sites at the edge of town.
Meanwhile, CWW’s membership had also voted to advocate for a residential hospice. End-of-life care became a hot topic in September of 2000 after PBS aired a Bill Moyers series called “On Our Own Terms,” which examined ways to care for the dying. The program made viewers aware of a gap in their health care system. Since the 1970s, the University Medical Center at Princeton has had a hospice program that cares for terminally ill patients in their own homes, but there’s no residential hospice where they can stay if they can’t remain at home.
Responding to the Moyers series, some CWW members formed a committee to study the problem. Initially, they thought of buying a house and converting it into a residential hospice. There, people could be cared for in their last days in a warm, home-like setting, with fees assessed according to a sliding scale.
Ultimately, the CWW group joined forces with members of a similar committee of health professionals at the University Medical Center. In the fall of 2002, this larger group, the Friends of Princeton Hospice, commissioned a feasibility study with the support of the medical center. Even before the results were in, the group’s work produced results. The hospital decided to reserve two beds for hospice patients who were experiencing a medical crisis — generally because they needed better pain management. The beds are on a floor where the nursing staff is oriented to end-of-life care, and a new, multi-disciplinary team is available to consult and help find solutions (such as a bed in a nursing home) for patients who can’t return home when the crisis is over.
The final results of the feasibility study were reported at a meeting just last month. The original idea — to buy a house and convert it — turned out to be too costly. However, there’s a good possibility that if Princeton’s medical center expands, as it’s planning to do, a residential hospice can be built on the new campus where it can share some of the hospital’s services, thus bringing down the cost.
Transportation is another issue for seniors, and it’s one that CWW members became involved with as individuals. Many older people today outlive their own ability to
drive, women by an estimated 10 years and men by about six. Some seniors go on driving long after they should have surrendered their license because, with little public transportation available, they feel that if they have to give up their car, their lives might as well be over.
In the 1970s, Princeton created Crosstown 62 to provide transportation for seniors and people who have disabilities, but Crosstown’s rides have always been available only on weekdays and only between about 9 a.m. and mid-afternoon. In 1996 CWW members and others in the community formed a committee to try to extend the hours, perhaps by enlisting volunteers who would use their own cars to take seniors where they needed to go. The committee’s efforts were derailed when Crosstown’s managers hired a taxi company to do the driving and asked the group to hold off and see how that worked out. Members moved on to other projects.
Recently CWW turned 10 years old, and last fall it held a major conference in Princeton to celebrate. At the Widening Horizons Conference, which was co-sponsored by Philadelphia public broadcasting station WHYY, keynote speakers and workshops explored four issues: senior housing, transportation, health, and civic action (volunteerism).
Afterward, people whose interest had been sparked began to meet as action groups to work on specific problems. The housing action group, for example, is investigating a possibility proposed by architect Robert Hillier, one of the keynoters. Instead of building developments for seniors on the outskirts of town, Hillier suggested creating pockets of senior housing by converting one or two houses in every downtown neighborhood into apartments for seniors.
The transportation group is concerned about extending Crosstown 62’s hours and will also try to promote a Princeton jitney service. The health action group will see what can be done about the fact that there’s no 24-hour pharmacy in the Princeton area. The civic action group is considering ways to match volunteers with tasks that take advantage of their experience and abilities. Already, most local volunteer work is done by seniors, who take up the slack at the hospital, the library, the senior center, at the polls at election time, and in other places.
As CWW continues to grow (House 6 is now organizing), what challenges does it face? To Vicky Bergman, a major concern is how to get everyone to recognize that we all belong to a larger community and that if people of various ages support one another, all will benefit. She pointed out that what helps one group sometimes also helps another in surprising ways. When municipalities cut down curbs all over town to accommodate wheelchairs, as required by federal law, some citizens complained about it, she recalled, but today the majority of the people using — and appreciating — the curb cuts are parents, pushing baby strollers. A Princeton jitney service would benefit everybody, not just seniors, especially if it reduced local traffic and made the roads safer (i.e. removing the hazards posed by some older people driving who really shouldn’t be). A residential hospice would meet the needs of all.
After last fall’s conference, I joined several different action groups. Since I still write and edit House 5’s newsletter as well, I hardly have time to do anything else.
Not that I’m complaining. However, I’m reminded of something my father said 30 years ago. He had just retired and I asked him how he liked his new life.
He told me, “I can’t imagine where I ever found the time to go to work.”
To learn more or for membership information, visit CWW’s website, www.princetonol.com/groups/cww/, or contact Vicky Bergman, New Houses chair, by E-mail at firstname.lastname@example.org or by phone at 609-921-0749 (daytime only).
Corrections or additions?
This page is published by PrincetonInfo.com
— the web site for U.S. 1 Newspaper in Princeton, New Jersey.