CWW House 1

To enhance the ability of its members to age well, and to age "in place."

One Community Of Residents Is Prepared To Grow Old

TOWN TOPICS, PRINCETON, N.J., WEDNESDAY APRIL 6, 1994

Growing old, becoming ill or disabled and dying are not generally discussed in our society.

But a group of longtime Princeton residents are making a conscious effort to think about what they will need as they grow older and to plan for their aging. They call themselves the Community Without Walls, because they have agreed to be a support system for one another and they have been meeting once a Month in each others homes for the past year and a half.

Ranging in age from mid-40s to mid-80s, they agree that what they would like most is to be able to stay in their own homes as long as possible and then to have someplace in Princeton where they can go when they can no longer manage on their own. They talk about the infrastructure that will have to be in place in Princeton to allow this to happen, and they are following the news about a possible continuing care retirement community in Princeton with close interest.

The impetus for Community Without Walls dates back to a conference on "Conscious Aging" in New York City which Richard and Victoria Bergman attended several years ago, where they bumped into Harriet Bogdonoff, also of Princeton. The death of Mr. Bergman's father four years ago had been traumatic for the Bergmans, partly because it left his mother alone and without someone to care for her as she had cared for his father.

"It was a very traumatic event, trying to figure out what to do with my mother," Mr. Bergman says. "It took quite a bit of time. We realized we were reacting in a crisis mode, and we decided there simply has to be a better way. We were becoming aware of nursing homes, retirement communities, group housing and so on, but we were making all these decisions in the worst possible way, with everyone stressed and. traumatized."

At the conference they discovered Mrs. Bogdonoff had similar-thoughts. She is a social worker whose work with agencies and in private practice hed been primarily with the elderly ever since she received her MSW from Rutgers in 1980. The Bergmans are cofounders and directors of Savant Associates, a consulting firm specializing in environmental, safety and occupational health issues.

It turned out that Harriet, in her professional capacity, had come to the same conclusions as we had; Mr. Bergman continues, "in that she saw a group of people here in Princeton in their 70s who had lived here a long time and had become widowed. Their whole world was falling apart. They became quite fearful anxious about what was going to happen to them." Professionally, Mrs. Bogdonoff was also aware of the broad spectrum of things that were going on in different parts of the country to help communities prepare for the aging process.

The three friends decided to see whether other people in Princeton were interested. With the help of Ros Denard they drafted a letter in the autumn of 1992, which they sent to 50 of their friends.

Known as "the falling leaves letter," it spoke of "unease" as the year was coming to an end and people get older. It posed several questions: "What lies ahead? Will I be well enough to live as I do now, and if so, for how long? Is my family near­by? Do I have friends younger than I am? Will I be able to stay in my own home?"

A meeting was scheduled at the Bergman's home to explore these questions. Recipients of the letter were invited as people who might be interested in the possibility of creating a nurturing "community without walls".

Everyone came — the Bergman's living room was crammed. Although two couples ultimately decided the topics were not of immediate interest to them; the "others have been meeting regularly ever since.

'47 Households

The group numbers 47 house­holds, mostly couples, with a few single people, and they include a wide range of professions, active and retired: lawyer, scientist, engineer, physicist, investment advisor, computer 'expert, physician, market researcher, manage­ment consultant; history teach­er, writer, artist, and active and retired college faculty.

'We all decided very quickly we were all longtime Prince­ton residents, and our real objective was what they call in the profession, to 'age in place,' " Mr. Bergman says. "Rather than moving away to someplace else, we wanted to figure out what ha to happen so we can stay in our own homes and apartments as long as possible and then have someplace to go in Princeton if and when the day comes when that is no longer feasible. We all agree on those objectives and as Mr. Bergman describes it, the group has focused on building a community within the Princeton community that would develop enough affection and respect for one another so that over time they would be willing to provide assistance and service, short of nursing or medical care, that might be needed. A mission statement accepted by the members last April states that the purpose of Community Without Walls "is to .enhance and support the ability of each member to age well. By becoming a member, we commit ourselves to the building of such a community."

The group is run democratically and has evolved a process by which it reaches consensus. It has decided against having officers, for instance, and wants to limit the size of the group to the number who It in a living room. The Bergmans and Mrs. Bogdonoff set up.the meetings and send out notices.

Meetings alternate between having a speaker and having. group discussion. Sometimes the larger group breaks into smaller ones and then reconvenes as a whole.

Several subcommittees have evolved. Early on a housing committee looked into different types of retirement communities and living arrangements within a radius of Princeton and reported back to the whole group.

Prefer Center of Town

 A survey designed by two experienced survey makers found . that although a few of the members were interested in moving into a continuing care retirement community now, the majority was not. The survey also found that if they were to go to a CCRC, everyone wanted it to be in Princeton and preferably close to the center of town. When offered other options five,10 or more miles away, the interest dropped dramatically. . In keeping with its mission to provide support for one another, the group has developed a data base. of "preferred providers"--individuals or services members have used and would recommend for providing household help, home repair painting, snow shoveling, asphalt repair, auto body. repair, basement waterproofing, dressmaking and clothing repair, gutter cleaning, landscaping, plumbing and yard . maintenance.

A committee calling itself The Friendly Support Group has set itself up for crisis assistance. The members make a point of finding out if someone in the hospital would like a visitor or a phone call. They are ready with soup or cookies, willing to play scrabble with someone recuperating from an injury or talk opera with an opera lover temporarily laid up. Mr. Bergman says, "One of the, things the group speculated about which is turning out to be true, is that this kind of support isn't as necessary now, when people have their own friendship networks, but that it will be crucial as friends die and people move away. People look first to their existing and longstanding friendship circle to provide support in the hospital and at home. Our anticipation is as our members get older and friends. begin to die or move away, the service we offer will become more import

 Intergenerational Group

The group has also decided that is important for it to be intergenerational, to include a wide range of ages. "We tend to socialize with our own age cohorts," Mrs. Bogdonoff notes. Then you all age together, and when you are all 85 and old, you're not there for one another. People move away and you find when you need help they're not there. That's some of the reason we wanted an age range."

According to Mrs. Bergman, the one thing that does bring in younger people is dealing with elderly parents. "They recognize the need to learn how to do that, and in the process start thinking what do they want their own aging to be. Do they want to think about it and plan for it, or do they want to have it done to them?"

"What we've found," Mr. Bergman adds, "is if you don't plan for it, it will be done to you, and who does it to you is, in reality, the luck of the draw. Whether you have a child or family member who is compassionate or whether you don't. If you do, you're lucky; if you don't, terrible things can hap­pen to you. And even if you're lucky, and do, they get tired after a While." Most of the CWW members are Jewish and are members of the Jewish Center, but this is more a function of their social circles, Mrs. Bogdonoff thinks There has been some effort at diversifying, bringing in members from the Presbyterian or Unitarian churches. But there is also a feeling that the group is a nice size now and that it can't get any larger without having to move the meetings to a community meeting room.

Community Building

One of the things we've also learned is that building a community takes time," Mr. Bergman remarks. "At a good number of our initial meetings, the chief topic of our conversation was 'What are we doing here? What should we be doing? Why are we here? "But everyone kept coming. Now it's gotten to the point where people are looking forward to coming." "We're talking about things that people don't usually talk about," Mrs. Bogdonoff says. "When you go out socially you don't talk about coming to terms with growing older, or what you'll need if you can't walk on your own. Just the concepts of facing mortality I don't think we talk about in the general sense in this culture." "So people look forward to the meetings as a place where they can be more open and address some of these issues that are in the back of all our minds," Mrs. Bergman adds. Mr. Bergman says that the group, while not affluent, is decidedly middle class. "So there isn't a need for charitable services and government contribution. On the other hand, what there is a need for is infrastructure." Mrs. Bogdonoff expands on this point. •'We're still at the stage of educating ourselves as to what the needs of an elderly population are," she says. "All over the country communities are faced with the same dilem­ma as the population is aging. Some planning needs to go on in every community so that there is some infrastructure there, an ability so that people who can stay in their own homes can do so. We're looking to figure out exactly what that is.

An Advocacy Group?

Three new committees have evolved recently. One is looking into the matter of advocacy-—should Community Without Walls be advocates, and if so for what? Another plans to monitor town council, planning and zoning meetings. The third will be thinking about what the group's goals and objectives for the future should be.

The group was wary of "going public" through an article in the newspaper. Some feel the members have just gotten to know each other, the sense of community is beginning to take hold, and question whether they want to add new people an article might bring. Others think that if CWW is going to do any advocacy see changes happen in infrastructure it needs to be bigger.

Out of the discussion at a recent meeting the notion evolved of setting up a network of small groups. The affiliation might be social, religious, professional or geographical by neighborhood. The original CWW would continue as is, but it would be available to offer guidance in how to get another group started. The Bergman call this the "pod" notion, because of the analogy to a cluster of seed pods on a vine or twig, and say this may be happening already and not just in Princeton. Mr. Bergman was recently asked to send a copy of the "falling leaves" letter to a high school classmate in New London where there is a community of retired coast guard officers.

Another concept of interest is that Community Without Walls is apparently the only group of its kind that has started from the bottom up. Martin Trueblood, who with his wife had helped set up Quaker-style nursing homes in the "Camden area, told the group at one meeting that virtually every other group that has tried to give support to aging people in a community is started by an institution, such as a hospital or a social service agency, from top down. In other words, an existing facility decides to market services to the community.

CWW, by contrast, is a community within a community that has organized itself and is looking for services, having defined the members' needs.

The members are fairly clear on what they want; it remains to be seen whether the infrastructure will evolve in Princeton to meet those needs. 

—Barbara L. Johnson