Carter Catlett Williams

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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
from Elma Holder, Barbara Frank, and Sarah Burger

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
I walk in her footsteps.

 

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

This photo shows the power of “relationship” which may have been her favorite word.

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

Pioneer Network Co-Founders Carter Williams (L) Convener and Rose Marie Fagan (R) Executive Director at 1997 First Gathering of Pioneers in Rochester, NY.

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.”

 

 

 

 

17 comments on “Carter Catlett Williams

  1. Lois Evans on

    It was during a restroom break at a Gerontological Society of America Meeting in the late 1980s when we first met Carter face to face. She must have read our name badges and immediately approached us, having been primed (as were we) by a mutual friend and colleague — Doris Schwartz. Doris, a retired nurse leader long concerned about the use of physical restraints with older people, and Carter, an advocate for both restraint-free care and also building a new paradigm of respect for the personhood of older people in long term care, had connected at a National Academy of Medicine (now AAM) meeting. Carter had already been speaking and writing broadly about the problem, including her observations of individualized care in Scandinavia and other countries around the world, and Doris had advised her to connect with us. At the time, we were still junior nursing faculty at the University of Pennsylvania, but we had published an extensive literature review and conducted a few pilot studies en route to a program of research on the topic of restraint reduction. And what a connection this turned out to be!!!

    Our meeting with Carter precipitated a rich and lasting collaboration and friendship. Keeping in touch through real letters (Carter’s most often in her unmistakably distinctive and impeccable penmanship) and phone calls (note that this was all before the internet!!), we learned from one other and were also guided by Carter to widen our lens from a focus on ‘restraint-free care’ to that of the person: ‘respectful, individualized, person-centered and –driven care.’ The relationship deeply informed and influenced our own writing and research. Not only did we co-author papers, presentations and symposia at national and international meetings, we also collaborated on an international research study. With funding from The Commonwealth Fund, our interprofessional team representing nursing, social work, medicine and architecture studied nursing homes in Scotland and Sweden. The resulting rich data about the importance of a philosophy of care for older adults, ‘knowing and respecting the person,’ the impact of a home-like care environment on elder behavior, function and engagement, and the critical role of staff to assure these elements were in place, facilitated a framework supporting meaningful change in long term care in America.

    Carter’s years of advocacy work with the (then) National Citizens Coalition for Nursing Home Reform made Carter the right person for the right time: she was appointed to the Centers for Medicare and Medicaid (CMS) Advisory Clinical Panel to help develop the Resident Assessment System and its Minimum Data Set. Her insistence on including information about the resident as a person in the CMS requirements for data collection and monitoring following the Nursing Home Reform Act aided greatly in embedding the ‘right questions’ to ensure that resident desires and needs were considered in their care.’ In her writings, she clearly and elegantly spoke to these values, as exemplified in these titles: And this is home?; Liberation: Alternative to physical restraint; Long Term Care and the Human Spirit; The new standard: Restraint-free care, Not restraint minimization; Days and years in long-term care: Living versus surviving; Physical restraint: Not fit for woman, man, or beast; and Salsify and sacrament: Discovering gifts of the aging spirit.

    We are so grateful to have met Carter when we did, and also that our professional relationship blossomed into a deeply abiding friendship that continued until her death. She was a wonderful mentor and friend. She once fed us a hearty lunch to help us ‘center’ just before we were to speak for the first time at the National Institute on Aging (NIA). We always found her spirit uplifting and her intellect and persistent commitment to the dignity and humanity of older people to be both inspiring and supportive. She had a beautiful laugh. She graciously shared favorite recipes, which are still used. We continued to visit, both in Rochester and Gloucester, even after all of us had retired… and we always came away buoyed by her spirit. Carter‘s lifelong engagement in serious work brought her joy and inspiration. She persisted in advocating for older people, and remained interested in the efforts and results of others in the field. She had enormous faith in the fundamental goodness of people who also believed in the struggle towards justice and kindness. For her, the work never ended. She remained powerful at 97, guiding her own person- and family-centered dying — at home –- with her family. Thank you, Carter, for showing us the way.

    Lois Evans and Neville Strumpf
    October, 2020

  2. Penny Cook on

    I met Carter and Frank Williams years ago in Rochester, NY and I felt strongly that I was in the presence of wise, intelligent and caring people. As I spent more time with Carter and as I saw how she experienced growing older, the word that came to mind again and again is “grace.” Carter lived her life and interacted with those around her with a graciousness that I’ve experienced with few others. The rich and inspiring legacy she leaves touches all of us, even if we don’t exactly know it. Her dedication to enhancing the lives of older people, her ability to convene people, to make them stop and listen and learn, is born out in the work of Pioneer Network every day. There will only be one Carter, but together we can carry on her work and collectively, all that she worked for and more will continue to live on.

  3. William A Johnson, Jr. on

    What greater epitaph can be offered, at the end of one’s life, than “she saw a problem, and she worked to solve it. The world is better because of her efforts.”

    I cherished my friendship with one of Rochester’s great humanitarian power couples, T Franklin and Carter Catlett Williams. Frank Williams was a man of great intellect, integrity and compassion, a national leader in the field of geriatrics. But his wife was no ordinary sidekick. Equally smart and compassionate, and fervently determined not to be relegated into the background, she mixed southern charm and grace, elegance and eloquence to “comfort the afflicted, and to afflict the comfortable.” She was determined that the lives of elderly people would be respected and valued until they reached their end.

    We shared a common Virginia background, except she was from the more genteel part of the Commonwealth. She was also born at a time and place where the social order was rigorously enforced, and Blacks and Whites had few opportunities to stand on equal ground. Fortunately, those bad values were not a part of her DNA. Our paths crossed in Rochester. From different vantage points, we worked to bring justice and equity into the lives of people whose interests were often ignored: she for the elderly and me for disenfranchised people of color. We found common cause, because our constituents, regardless of race, gender and age, all suffered the same misfortune: total neglect, willful indifference, racial and class prejudice, and the imposition of structural barriers which denied equity and inclusion. Though nearly a generation older than me, she was far more optimistic that being persistent and staying focused would pay off. She believed that change was around the corner; I’m still waiting to see the light in the tunnel.

    I am most thankful for the opportunity to know, admire and fellowship with both of these unique people, but especially to know such a determined, accomplished and genuinely good person as Carter Williams. She lived a good and long life. She influenced many of us to put people before policy and politics. She led by example.

    Servant of God, well done !!

  4. Joan Devine on

    What an incredible woman. I remember only briefly meeting Carter at Pioneer Network conferences, and it was through the eyes of someone who looked to her, along with other early pioneers, with deep admiration. I was grateful for the honor of being with someone who had and was making such a difference in the lives of so many – Elders and those who shared her passion to create a better life for Elders. I am honored and humbled to be in some small way a part of Pioneer Network, and through it, to help carry on her legacy.

  5. Sister Imelda Maurer on

    I too write this with tears after having read these lovely, warm tributes to and memories of Carter. Of the multitude of things that I might share about Carter, I offer these two:
    Some time after Frank’s death, Carter moved to a Life Plan Community in Rochester. She left, after a year there, saying that she “was losing” herself. I have been told that following her discharge from the hospital in September, she chose not to stay in the long-term care community she moved to. I heard her say that it wasn’t “home”. I admire Carter and love her for not allowing any institution to be the cause of “losing self”. Something about self-determination and integrity ring out. (I know some of us might not, for external reasons, not be able to make such a choice so the urgent call — still — is for radical change NOW.

    My second memory is of Carter’s convening address the year that she was living in the Life Plan Community. She spoke with such simplicity and vulnerability about the internalized ageism that she was shocked at recognizing within herself. I have such love for Carter and am so moved that she elicited this love and admiration for so, so many people. In order to aptly honor Carter, I must consciously live the values so so consistently lived.

  6. Cathy Lieblich on

    I had the opportunity and extreme pleasure to meet Carter Catlett Williams when I was working with Paulette Geller at the Winter Park Health Foundation in 2000 and we wanted to bring culture change to Florida. Paulette had worked with Carter at the Jewish Home of Rochester and learned about the “Nursing Home Pioneers” from their newsletter. We worked with Rose Marie Fagan to bring Carter and other Pioneers to Winter Park to speak at our first Florida culture change conference and Paulette invited me to lunch with her and Carter. It was an amazing experience and I ended up spending the rest of my career committed to the culture change movement.

  7. Jeanne Heid-Grubman on

    Thank you, Carter Catlett Williams! Thank you for insisting that the status quo was not good enough. Thank you for recognizing that people deserve more and better. Thank you for pushing that very heavy rock up a very steep mountain. Thank you for refusing to sit quietly.

    I wish I could say we were friends but I never had that pleasure. What I can say is that, I carry your dream – your vision – in my heart every single day. You will always be by my side.

  8. Dolores L. D'Agostino on

    Thank you for this journey through the early years of the Pioneer Network and the surrounding Active Aging context. I participated in several of the activities/programs where Carter Page wa involved. She was impressive. Since I am Rochester-born and educated, I identify with that aspect of her activism. She and the surrounding eldercare movement were key to my becoming a nursing home ombudsman in New York City during that time, and to many of my other Aging pursuits.

  9. Dr. Jytte Lokvig on

    I’m writing this through tears. We’ve lost a giant in our field. I hope someone will document in longterm impact Carter has had on our culture. The world needs to know and carry forth her legacy.

  10. Carmen Bowman on

    In 2013, Carter penned these words in the convening of the Pioneer Network conference I have been quoting and sharing in her quest to promote real life instead of fake and institutional life ever since:
    “We belong together not in ghettos of old age or single age culture.”

    “What is lacking is real life. Real life is not found in programs. Real life is in the give and take of everyday life.”

    “Beware of confusing programs with real life.”
    Thank you Carter for being our leader.

  11. Mary Ellen Early on

    What a legacy! I never had the opportunity to meet Carter, but I knew her well through Barbara Frank. In 1980, I was a analyst with the Florida Legislature. I was working on a nursing home reform bill and Barbara and, to a lesser extent, Alma Holder became resources. I don’t remember exactly how we connected, but they were a great help at that time and years later when I was working in other capacities on long-term legislation. Carter influenced the thinking of many, if not directly, through those she mentored. Her contributions to changing the face of nursing home care will live on forever.

    Mary Ellen Early, LeadingAge Florida

  12. Angel Hoffman on

    She should be remembered in a very big way outside of just those who know about culture change. Do you think it would be possible to conduct a tribute to her on a national basis and/or lobby for a commemorative stamp.

  13. Zoe Dearing on

    Carter Williams… What an inspiration she was to me! I was one of those people, like many others, who had spent my entire career since the 1970s believing that we could make life better for those living their lives in LTC communities. I was so proud when we had finally reached the time in which our Elders living with dementia were getting the special care that they needed to thrive while struggling with their overwhelming challenges.

    Well, I attended my first Pioneer Network conference nearly 20 years ago and was given the opportunity to sit next to Carter in a learning circle. She was like a celebrity to me and I was shocked that SHE would not only be sitting in a learning circle (that’s when I learned there is no distinction in those who attend Pioneer Network conferences!) but would be carrying on a conversation with me before the session started. I was telling her my background and beliefs and commented how proud I was that we now had “dementia care neighborhoods.” She quietly listened. In her kind way, she leaned into me, looked directly into my eyes and softly said, “Zoe, make me a promise. Promise me that you will go back home and fight so that we no longer need to make a distinction in the kind of care we provide to anyone living with dementia.” Her one-sentence request humbled me and became my focus for the rest of my career. I was a dementia care educator and always held Carter in my mind as I taught others about respecting the dignity of Elders living with dementia. I emphasized, as Carter requested, that there was no difference in the person with dementia from any other human being. I realized at that moment that, although we had come so far, we had much more work to be done.

    Her legacy will live on because I know she had this kind of conversation with many, many others, resulting in the same inspiration for all who knew her to always strive to improve the lives for our Elders who so desperately depend on our loving help.

    I will always be grateful for that unexpected but very purposeful moment in time. It changed me forever.

    • Elma Holder on

      Thank you so much for sharing this memory of Carter and her generous teachings based on her experiences in working with persons with dementia.

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