global stories of aging and connection hear/say global stories of aging and connection A collaboration between the Global Brain Health Institute and Voice of Witness hear/say Team Cliff Mayotte Jennifer Merrilees Lorina Naci Caroline Prioleau Cynthia Stone Dominic Trépel Erin Vong This volume of hear/say is dedicated to aging storytellers everywhere hear/say, created by members of the Global Brain Health Institute, is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License. To view a copy of this license, visit creativecommons. org/licenses/by-nc-nd/4.0 or send a letter to Creative Commons, PO Box 1866, Mountain View, CA 94042, USA. Cover and book design by Caroline Prioleau Printed by Prepress, Inc. San Francisco 2203 Newcomb Ave San Francisco, CA 94124 prepress.com Available for purchase at norfolkpress.com Printed September 2019 Contents Foreword 8 Nothing Pleased Him 83 Victor Valcour, Executive Director, Global Brain Health Institute Narrated by Luisa Escudero-Coria Interviewed by Stefanie Piña Escudero, Atlantic Fellow Introduction 10 Cliff Mayotte, Education Program Director, Voice of Witness, and the You Kind of Have to Enjoy the Process 95 hear/say team: Jennifer Merrilees, Lorina Naci, Caroline Prioleau, Narrated by Jennifer Yokoyama Cynthia Stone, Dominic Trépel, Erin Vong Interviewed by Rowena Richie, Atlantic Fellow Misery is Optional 15 The Gift of Today 105 Narrated by Helen Rochford-Brennan Narrated by Mary Nardulli Interviewed by Cynthia Stone, documentary filmmaker Interviewed by Cynthia Stone, documentary filmmaker Eternalistic Geriatrics 33 I’m Still the Same Person 119 Narrated by Christopher Court Narrated by Nick Nardulli Interviewed by Alex Kornhuber, Atlantic Fellow Interviewed by Cynthia Stone, documentary filmmaker This is Social Justice! 37 It is a Crazy Good Thing 127 Narrated by Cao Wenlong Narrated by Nene Interviewed by Tee Boon Lead, Atlantic Fellow Interviewed by Lenisa Brandao, Atlantic Fellow To Harbor Any Ill Will or Misplaced Hope is Stupid 45 Blaze of Glory 131 Narrated by Marc Calderon Narrated by Deidra Couch Interviewed by Jack Taylor, UC San Francisco Interviewed by Caroline Prioleau, UCSF Memory and Aging Center & GBHI She is My Mother 49 Holy Saturday 149 Narrated by Bia Barros Narrated by Luz Edith Valentina Interviewed by Laís Fajersztajn, Atlantic Fellow Interviewed by Stefanie Piña Escudero, Atlantic Fellow Behavior is Communication 77 Tom and Susan—Since About 1989 155 Narrated by Pam Roberts Narrated by Tom Interviewed by Jennifer Merrilees, UCSF Memory and Aging Center & GBHI Interviewed by Jennifer Merrilees, UCSF Memory and Aging Center & GBHI hear/say My Mom Manuelita 161 On the Brain’s Beauty, Surfing, and Mortality 265 Narrated by Lourdes Maquera Narrated by Serggio Lanata Interviewed by Maritza Pintado-Caipa, Atlantic Fellow Interviewed by Camellia Rodríguez-SackByrne, GBHI We Just Kind of Went With It 175 True Happiness is Helping Others 275 Narrated by Robin Ketelle Narrated by RB Hackenberg Interviewed by Caroline Prioleau, UCSF Memory and Aging Center & GBHI Interviewed by Jennifer Merrilees, UCSF Memory and Aging Center & GBHI The Gelatin Silver is Locked in Space and Time 187 He Was Still a Person 281 Narrated by Stephen Somerstein Narrated by Rodrigo Uribe-Manzano Interviewed by Alex Kornhuber, Atlantic Fellow Interviewed by Stefanie Piña Escudero, Atlantic Fellow You Never Know What’s Going to Happen Next 191 Conquering Misfortune with Kindness 291 Narrated by Carol Kameny Narrated by Doris Cheng Interviewed by Jack Taylor, UC San Francisco Interviewed by Tee Boon Lead, Atlantic Fellow The Last One to Figure It Out 199 She Was Going to Be Independent 305 Narrated by Paul Kameny Narrated by Jenny Zitzer, Atlantic Fellow Interviewed by Jack Taylor, UC San Francisco Interviewed by Jennifer Merrilees, UCSF Memory and Aging Center & GBHI Instant Joy 205 He Just Does It 319 Narrated by Joyce Calvert, Jane Dahlgren, Cailin Lechner, Narrated by Randi Swindel and Madhu Manivannan Interviewed by Jack Taylor, UC San Francisco Interviewed by Phaedra Bell, Atlantic Fellow Resources 327 Clowning Does Me Good 223 Narrated by Yaya Interviewed by Lenisa Brandao, Atlantic Fellow Wait a Minute! 227 Narrated by Laura Mitic Interviewed by Caroline Prioleau, UCSF Memory and Aging Center & GBHI You Are So Young to Be Here! 237 Narrated by Natalia Sánchez-Garrido Interviewed by Stefanie Piña Escudero, Atlantic Fellow hear/say Foreword GBHI is the product of decades of work at UCSF’s Memory I’ve Always Had an Interest and Aging Center led by my boss, Bruce Miller, MD, and his in Older People efforts to train people from around the world; and The Atlantic Philanthropies, whose grand ambitions for social change and I’ve always had an interest in older people, even as a child. humbling generosity help to push societies to address social justice. When I entered medicine, my interest in caring for older people As the world’s population increases, so does the burden of continued. dementia. However, the global burden of dementia is hard to I’ve also always been interested in different settings and people. estimate, largely because it’s hidden. Thus, we must continue to Perhaps this is why, after four years of medical school in rural share and to uncover the stories of dementia and all affected— Vermont, where many assumed I would stay, I packed my bags the patients, caregivers, family members, and providers. Each and hit the road—first to Colorado for internal medicine training, has a unique, powerful and important story to tell. then to South Africa to work in rural medicine, followed by Hawaii I’m humbled by the stories presented in this second volume of for training in geriatric medicine. hear/say, which continues to raise the voices of elders and their In Hawaii, my program happened to be linked to a study of role in society. As you will read, these stories of aging, demen- dementia in Japanese Americans. I’m grateful for this good fortune, tia, art and life may look and sound different—in many cultures, for this is where my interest in dementia was cemented. Caring dementia is associated with “crazy,” resulting in stigma and social for older people with cognitive problems requires a clear under- isolation, while other cultures adore their elders, as reflected in standing of the context of their care at home. To do this, I’ve had focused care and supportive environments—but often the themes to delve into their personal narratives—their stories. Learning are the same, and they unite us as humans. about the lives of elders I’ve cared for is one of the most satisfying As I grow older, my interest in older people continues. I am parts of my job. grateful to explore, to connect, and to learn from diverse perspec- As Executive Director of the Global Brain Health Institute (GBHI) tives. I hope this collection of stories will have a similar effect on you. and the Atlantic Fellows for Equity in Brain Health program, I am fortunate to be surrounded by a community of innovative, passion- Victor Valcour, MD, PhD ate, and skilled individuals who devote their lives to protecting Executive Director brain health. Global Brain Health Institute Our community is built on the idea that achieving fairer, healthier, more inclusive societies requires leaders with diverse perspectives to collaborate and to learn from one another. We aim, in part, to improve brain health worldwide by training a new generation of leaders to meet community needs with local resources. 8 9 hear/say IntroductIon public reading of some of our collected narratives. Immediately Your Voice is Just as after the reading, it became clear that hear/say would be a game Important as My Voice changer for MAC and Voice of Witness. The emotional experience reminded us that storytelling was uniquely adept at normalizing The hear/say project began as a collaboration between the (and even celebrating) issues we struggle to talk about and that Memory and Aging Center (MAC) at the University of California, our project heartily embraced the intersections of aging, art, San Francisco (UCSF) and Voice of Witness in 2016. Our goal was healthcare, and social justice. The project also had an impact to forge space for patients, caregivers, doctors, family members, on the culture of both organizations as we experienced the most researchers, nurses, artists, and more to share “stories of aging, creative aspects of healthcare and the many caregiving aspects of dementia, art, work, and life.” We wanted to shed light on the storytelling. It took us about a week to regroup and ask ourselves, personal and rarely heard day-to-day experiences of aging and “What’s next?” dementia, and through the oral history process, reduce the stigma “What’s next?” turned out to be an expansion of the hear/say and othering that occurs by perpetuating a “single story.” project to include the Global Brain Health Institute (GBHI) and Caroline Prioleau, hear/say team member and MAC staffer, sums work directly with the Atlantic Fellows for Equity in Brain Health, up the energy that drove the project: “My passion for collecting an international cohort dedicated to protecting the world’s aging and sharing stories of elders is the chance to increase empathy populations from threats to brain health. The expansion also through curiosity and wonder (versus reaction and judgment). If included the making of a short documentary film (more on that we can be curious about what someone is experiencing, we can later). The new iteration of the hear/say oral history training was connect and understand better. The more we can connect, the conducted with the fellows, faculty, and staff at both GBHI found- less isolation and stigma there is.” ing sites, UCSF and Trinity College Dublin, in the late fall/early Adding to that curiosity and wonder, Jennifer Merrilees, MAC winter of 2018.