In 1997, Carter Catlett Williams was determined to work toward changing nursing homes so that the quality of life for elders could become more life-affirming. She convened a small group in Rochester, N.Y. of others dedicated to independence and quality of life for elders in need of care. This group ignited a large spark in kindred spirits across the nation that became the Pioneer Network for Culture Change. Every year up until August 2019, Carter served as the convener of the Pioneer Network Conference; giving the opening talk and ringing in the start of the event. Even when delivered virtually, her vision and her words of encouragement inspired thousands to continue the work of creating fundamental change in the culture of aging, care and support.
Remembering our Beginnings
First, we three share the feeling that Carter’s body of work, coupled with her graceful, caring advocacy, exemplifies how one person can do so much to change the world. Carter was a gentle giant who helped change everyday life for nursing home residents.
Carter was also a very dear friend. Her warmth, kindness, humor, attentive presence, and heartfelt insight enriched us each deeply.
Carter Williams grew up and died in tidewater Virginia, where she developed a deep and abiding faith that each individual is unique even though a culture of inequality predominated at that time. In her daily life she put all others at ease and welcomed them into her embrace, learning from each exchange and building her values that undergird individualized care.
We first met Carter in 1983 when she moved to Washington, D.C. with her husband, T. Franklin Williams, M.D., who had been appointed by President Reagan to become the Director of the National Institute on Aging. Early on, she reached out offering volunteer work to our organization (NCCNHR – the National Citizens’ Coalition for Nursing Home Reform, now Consumer Voice). She explained to us that when she worked as a social worker in Rochester, New York, she was dismayed by the experience many of her older clients had once they moved into nursing homes. She often quoted one who told her, “you haven’t lived till you’ve gone to the bathroom on someone else’s schedule.” She shared what she had seen, her concerns, and her determination to do something about it. She became one of our leading advisors on a host of important issues.
Carter participated in our National Symposium on Quality Care: The Residents’ Point of View in Florida in 1985. Residents said what was most important to them was that they have kind, caring relationships with staff and that they keep their personhood, by living their days by their own choices and routines. Our work in 1984-1985 contributed to the work of the Institute of Medicine which, in its pivotal 1986 study, Improving the Quality of Care in Nursing Homes, embraced individualized care as an integration of quality of care and quality of life. At subsequent NCCNHR conferences, Carter described relationships as the foundation for individualized care. Her words gave a conceptual framework to our advocacy.
Carter was a leader in the outcry against the use of physical restraints. These devices were used to tie down people who, because of their dementia, didn’t always know when and where it was safe to move, so the restraints were used to prevent them from moving about. In the US almost half of all residents were in some form of physical restraint. In 1987, Carter traveled to Sweden and Scotland, visiting nursing homes that didn’t use restraints. They explained that instead, they “individualize care for each person.”
We’ll never forget how excited Carter was. She came to our NCCNHR basement office and Elma rang our advocacy bell signaling for us to gather for something important. We all crowded into a windowless conference room to hear her tell us about the homes and what she had seen and learned. Their residents, with varying levels of dementia, would have been restrained in the United States. Instead similar residents in the homes that “individualized care,” were content because they were able to maintain their normal daily routines. Consistent caregivers allowed staff to form deep relationships with the people they cared for. They knew their routines and supported residents to live their lives as they were accustomed to doing.
Carter became a force for individualized care in an otherwise overly clinical mindset. She spoke of that approach to every key player she could. She joined efforts to make the idea of individualized care the core of the national law we were all working towards. Elma, Sarah, and Carter connected with Joanne Rader, a Pioneer Network founder who was then at the Benedictine Nursing Center in Mt. Angel, OR. Joanne used “individualized care” instead of restraints. Beryl Goldman and Jill Blakeslee of Kendal Corporation in PA, early leaders in restraint free care, shared with Carter and Sarah that they saw their residents improve when they took off restraints. Lois Evans RN PhD and Neville Strumpf, at the University of Pennsylvania Nursing, who began decades of friendship and colleagueship with Carter, did the first US research, “Restraint use in hospitalized Elderly, Perceptions of patients and nurses,” (1988). No one had ever asked patients for their experience. They reported being frightened to be tied down. They described fear that they would need to use the bathroom but would not be able to get up to do so. Reports of residents’ experiences compelled practitioners to change.
The movement was growing. Carter, Joanne, Sarah, and others organized a 1989 U.S. Senate Special Committee on Aging National Symposium: UNTIE THE ELDERLY: QUALITY CARE WITHOUT RESTRAINTS. Many clinicians came forward and provided examples of improved results by removing physical and chemical restraints. In the exhibit hall of a national nursing home conference, Carter challenged “Sam the Posey Man” to stop selling a product meant to tie people down. Because of national advocacy, the Posey Corporation began to change its product line, no longer advocating restraints. Now physical restraints are almost entirely gone from nursing homes. We have continuing challenges with chemical restraints and alarms. Still today, Carter’s guidance to use individualized care provides the path to eliminating these other restraints.
This work on restraints became the first application of the Nursing Home Reform Law’s concept of individualized care. In the years following the passage of the law, called OBRA 87, Carter worked with NCCNHR and other advocates to make its ideals a reality. She participated as part of a core team of advisors that Sarah and other staff turned to for years in development of regulations on physical restraints, quality of life, residents’ rights, and customary routines. Carter helped develop the customary routines section of the resident assessment instrument adopted by the federal government.
She joined with her dear friend, Janet Tulloch, resident of a local nursing home who served on our board, in teaching nursing home surveyors about “quality of life and customary routines.” Janet had led Sarah Burger to NCCNHR years earlier. When Sarah was Janet’s nursing home nurse, Janet encouraged her to volunteer at NCCNHR. Carter and Janet enjoyed many adventures, including an “escape” from her nursing home to Carter’s family home in Gloucester. Janet, tired of nursing home life, reveled in sleeping as long as she wanted to in the morning, and then, for breakfast, having fresh cracked runny eggs!
Carter and Frank returned to Rochester to live after he finished his tenure at the NIA. Carter’s advocacy never stopped. For our 1995 annual meeting, Sarah organized a panel of pioneering practitioners she and Carter had been working with. The group included now well-known Pioneer Network founders Barry Barkan from the Regenerative Community in CA, built on connections between people; Bill and Jude Thomas from the Eden Alternative reintroducing spontaneity with social and biological diversity; Joanne Rader, individualized care reduces restraint use in Oregon, and Charlene Boyd, who implemented culture change in one Washington state nursing home. Carter and Sarah had talked individually with each of them, but they had never all been together. They went to dinner, quickly became fast friends, and began talking about strategies for future change
Carter flew home from that conference with Rose Marie Fagan, the local long term care ombudsman. They excitedly talked about how to get funding to bring together these and other leading practitioners across the country who were “pioneering” more humane practices. For this first gathering in Rochester, NY, Carter convened the meeting, Barbara facilitated it, and Sarah was the recorder, later helping to produce the group’s first report.
Carter opened the gathering as she did for years to come, by sharing the history of the area. Rochester was home to Frederick Douglas, a civil rights pioneer, and Susan B. Anthony and Elizabeth Cady Stanton, women’s rights pioneers. We visited landmarks in Rochester celebrating these pioneers. As we concluded our gathering, Carter charged us to be Pioneers for nursing home residents, to change our world.
Elma remembers looking out the window as we had our closing circle. We had been enveloped in blizzard level snow for most of the time together. Now she saw snow coming down in the bright sunlight – it felt like a sign of the momentousness of the gathering.
The rest of this story is now a part of our shared experiences, working individually and together in the Pioneer Network movement.
We leave you with this view from the window by Carter’s favorite spot to sit in her beloved family home. She marveled each day at the light glistening on the water.
from Dr. Bill Thomas
from Jude Thomas
Carter and Frank Williams taught me, actually they showed me the deepest meaning of grace and dignity. They showed me warmth, kindness, wisdom, and love. Every time I spoke to them I felt — heard. But there was more, so much more. I lost my mother at a tender age and, when I met Carter nearly 30 years ago she filled some of that empty space. I will always be grateful to her for that gift.
When I learned that Carter was nearing the end of her time on this earth, I went to sit at my sacred place over looking Cayuga Lake. I closed my eyes and used my memories to revisit their home on Monroe Avenue. This was, and will always be, one of my favorite places to “be.” In my mind’s eye, I pulled my car up to the curb as I had done so many times before. I walked up the walkway to their front door. I could see them there, I could hear the sounds of their house and breath in the warm and comforting smell of their home. I walked through every room. I sat in those chairs. I could feel the contours of Frank’s chair, and feel his presence. I remembered the many meals I shared at their table. This is where convivium was always most real to me. Every meal was warm, welcoming and delicious. Frank always served and cleared the table but the most precious part of the meal was the conversations we shared together! I could have stayed at that table for hours just sharing thoughts, listening, learning and being truly heard.
My favorite spot of all was the little table in the kitchen overlooking the small but lovely backyard garden. Carter and I would sit there for breakfast and then again for lunch and we never ran out of things to talk about. I loved “my” room. They always let me believe it was “mine” even though I knew that so many of their guests slept there and perhaps felt the same connections.
We always went for walks when I visited and Carter would give me all of the news of the neighborhood. Not long after Carter had her knee replaced we did a three mile trek together! I thought of her strength and determination when I had my own knee replacement. She never gave up! I was so inspired by her determination and drive. As we struggled with the hardship of our work fighting for culture change (you all know what I mean!) I would recall all the years Carter fought…and won!
Bill and I have said many times that our goal in life is to be like Frank and Carter when we grow up. They were the elders we hope to become.
I was so glad she returned to her home in Toddsbury. I would not be able to see her as much, but I knew that she would be sheltered in the bosom of her warm and loving family. She lives on in them and in all of us whose lives she touched and changed for the better.
Carter was ready to return to Frank. He was the love of her life and she was his. Her faith in the rightness of the universe was strong.
I will miss her terribly. She is a person who became a legend and I will carry her example in my heart until the end of my days.
from Ann Marie Cook
Carter Williams was gracious, elegant and tough as nails – an unusual and beautiful combination. She served on Lifespan of Greater Rochester’s Board of Directors, gracefully challenged the status quo and those in long-term care, was our leader in culture change and inspired a community. She clearly had a personal calling. She used her talents, her voice and her hard work to change an entire system. All of us in Rochester, NY thank her and will always honor her legacy.
from Wendy Lustbader
I am just so sad. Carter and I have been friends for thirty years. What a gift it has been to know her and to have been able to stand by her when she slipped into dementia these last few years. I kept calling her a few times a week, even though she couldn’t remember anything I’d told her in the previous calls or even what she had done that morning. We just loved each other in the present moment, talking about the birds we saw in our respective feeders and the quality of light coming in our windows — whatever came to us, sometimes memories, sometimes venting about Trump who she wasn’t able to forget. We continued to have many laughs. When I would slip and ask her a memory-dependent question, like “Have you heard from …?” she was so gracious — saying she wished she could tell me. It was never a burden to call her, just an interlude of loving friendship that I knew couldn’t last forever and could end at any time. We always hung up with this awareness and with gratitude that she could still operate her cell phone — that is, when she could find it. I often had to ring three full cycles of rings until she finally located it. This was all part of the privilege of still having her in my life. It will take some getting used to, not being able to engage in the ritual of ringing her phone over and over again, hoping to hear her voice still rough with tinges of her afternoon nap. She always thanked me for calling her, for persisting, and I always said it was my pleasure. It was.
from Barry and Debby Barkan
In my mind’s eye, I believe that the highest place in the world beyond this one is reserved for those people who dedicate themselves to finding what is real and true and then, without ego, connect those people with one another and virtually anyone who will listen. This is what Carter did and why she was our convener.
Back in the early eighties Carter knew intuitively that there had to be a better way to provide care and a meaningful life for frail old people and she set out on a journey of discovery that brought her to England and Scandinavia. I received a phone call from Carter sometime around 1984 asking if I was the author of the article in Aging magazine describing the Live Oak Regenerative Community as a vehicle for transforming the institutional culture of a nursing home. In those days before the internet, she said he had been looking for me for a few years and finally found our phone number. I had no idea who she was, but about a year later I was on the East Coast driving from Connecticut to Virginia and I stopped for about an hour to meet with her at the home she shared with Franklin on a federal campus in Rockville, Md. At the time Franklin headed the National Institute on Aging and they had relocated there from Rochester, NY.
Our planned one-hour conversation stretched to more than three. We reminisced about our lives in the civil rights movement in the South, her life as a social worker and her quest for a better way, and our work in building resident centered communities and my frustration over the resistance we continually encountered from nursing home operators. We could have talked for three more hours, but Carter, ever concerned about others, sent me on my way because there was still a chance for me to beat the traffic on I-95 south of Washington. By the time I left, we were deeply bonded and good friends. I couldn’t wait to get home to California to tell Debby about this amazing woman I had met.
About ten years later, Carter had found three more culture change pioneers: Charlene Boyd, who flattened the hierarchy and converted hallway to households at Providence Mt. St. Vincent in Seattle; JoAnne Rader, the radical nurse who was leading the way to breaking the bonds of restraints; and Bill Thomas, who together with his wife, Jude, started The Eden Alternative. At Carter’s urging the National Citizens’ Coalition for Nursing Home Reform (NCCNHR -now the National Consumers Voice for Quality Long Term Care) invited the four of us for the final plenary session during one day at their annual meeting. Usually, at conferences participants can’t wait to exit the last meeting of the day to get together with old friends for dinner and perhaps a drink or two. But the folks wouldn’t let us go, asking one question after another. Finally the four of us were whisked into a room with Carter and a few of the NCCNHR staff to begin a discussion about the values, principles and practices common among us. It was that meeting convened by Carter that was really the genesis moment for what has become the pioneer movement.
It’s funny how memory works. For the past 20 years or so, I have thought warmly of Carter each time I have cleaned mushrooms in our kitchen in Berkeley. My mind always goes back to being a prep chef for Carter in the home she and Franklin shared in their home on Dartmouth Street in Rochester. They provided Debby and me home hospitality when we were in town bringing the regenerative community culture to Fairport Baptist Homes and the Rochester Jewish Home. I started to wash a portobello mushroom under water and Carter stopped me and with a voice more direct than I have ever heard from her before or since, “You never wash a mushroom because it will absorb the water. You gently brush the dirt away.” And ever since, each time I clean a mushroom, Carter has come to my mind.
Debby and I bless your soul, dear Carter, on your journey into the unknown. We welcome you to visit us in our dreams anytime.
from Sue Misiorski
I was very blessed to meet Carter in 1997 when the early Pioneers gathered in Rochester to explore how elder care could be transformed. Carter has been an important mentor to me, with teachings ranging from restraint elimination to relationships being the heart of life and long-term care. My favorite memories of Carter are from her convener speeches at Pioneer Network conferences–always filled with wisdom and “aha” moments–and from visits to her homes in Rochester and VA. Sitting with her and fellow Pioneers in the sunshine overlooking the water and having provocative chats about changing aging was fuel for the hard work of change. I’m ever grateful to Carter and know that her legacy will carry on as Pioneers throughout the world continue to beat the drum for culture change.
from Rose Marie Fagan
We referred to ourselves in the formative years as the Bobbsey Twins. Our shared vision for a movement to transform nursing homes and the culture of aging continues…”Keeping our eyes on the prize.”