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  Praise for Us Against Alzheimer’s

  “The stories in this anthology are moving and illuminating. I believe in the power of story to educate and demystify, to demolish fear and shame, to generate conversation and connectedness. To humanize. It is through stories like these that we begin to understand people living with Alzheimer’s, and maybe—through empathy and compassion—we can heal what can’t yet be cured.”

  —Lisa Genova, New York Times–bestselling author of Still Alice

  “Alzheimer’s can be isolating and terrifying, but when we share powerful stories like these, we begin to tear down the walls that keep it in the shadows. The powerful voices in this book shine a light full of humanity, heart, and healing to a disease that has affected so many.”

  —Lauren and Seth Rogen, Founders of Hilarity For Charity

  “This anthology is terrific. It is the perfect read for those who have or have had the Alzheimer’s experience. The stories are heartfelt and real, and will make a difference in the lives of many. Another excellent piece of work from Marita Golden!”

  —Goldie S. Byrd. Alzheimer’s Researcher and Director, Maya Angelou Center for Health Equity, Wake Forest School of Medicine

  “Here is what’s so beautiful about this book: It is chock full of people sticking their necks out and telling their story. With clarity, with patience, with feeling, with faith.”

  —David Shenk, cohost of the podcast The Forgetting: Inside the Mind of Alzheimer’s, author of The Forgetting, and creator of the Living with Alzheimer’s Film Project

  Copyright © 2019 by Marita Golden

  Foreword by David Shenk copyright © 2019 by David Shenk

  Introduction by George Vradenburg copyright © 2019 by UsAgainstAlzheimer’s

  All rights reserved. No part of this book may be reproduced in any manner without the express written consent of the publisher, except in the case of brief excerpts in critical reviews or articles. All inquiries should be addressed to Arcade Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018.

  First Edition

  This volume includes works of fiction, in which names, places, characters, and incidents are either the products of the author’s imagination or are used fictitiously.

  Arcade Publishing books may be purchased in bulk at special discounts for sales promotion, corporate gifts, fund-raising, or educational purposes. Special editions can also be created to specifications. For details, contact the Special Sales Department, Arcade Publishing, 307 West 36th Street, 11th Floor, New York, NY 10018 or [email protected].

  Arcade Publishing® is a registered trademark of Skyhorse Publishing, Inc.®, a Delaware corporation.

  Visit our website at www.arcadepub.com.

  Visit the author’s website at www.maritagolden.com.

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  Library of Congress Cataloging-in-Publication Data is available on file.

  Library of Congress Control Number: 2019943603

  Cover design by Erin Seaward-Hiatt

  Cover illustration: iStockphoto

  Print ISBN: 978-1-948924-14-6

  Ebook ISBN: 978-1-948924-16-0

  Printed in the United States of America

  CONTENTS

  Foreword by David Shenk

  Introduction by George Vradenburg, chairman and cofounder, UsAgainstAlzheimer’s

  Introduction by Marita Golden

  TURNING POINTS

  Introduction

  Alzheimer’s and the ER, JANE BANDLER

  Every 68 Seconds, MERYL COMER

  Me Fe Nos Sostiene (My Faith Sustains Us), DAISY DUARTE

  The Way In, MARITA GOLDEN

  Father Figures, EVANS D. HOPKINS

  Butter in the Sugar Bowl, ELIZABETH NUNEZ

  Anchored Against Alzheimer’s, SONSYREA TATE

  Revelations, LORETTA ANNE WOODWARD VENEY

  ALL THAT REMAINS

  Introduction

  The Last Conversation, BARI DIANE ADELMAN

  Devil’s Alley, TINA JENKINS BELL

  Mother’s Memories When She Can’t Remember Them?, DANIELLE BELTON

  The Other Side of Here, CATHIE BORRIE

  What Happened to Brad?, CAROL BRADLEY BURSACK

  Fear and Laughter, LISA FRIEDMAN

  Ten Seconds, SUSAN KIM CAMPBELL

  My First Mentor, LENORE GAY

  Be Here Now, MARITA GOLDEN

  Heading Out to Pluto, GREG O’BRIEN

  Hell No, GREG O’BRIEN

  The Demons Were Chasing, GREG O’BRIEN

  Tears Melting Inside, VICKI TAPIA

  Out of Time, SALLIE TISDALE

  I WON’T FORGET YOU

  Introduction

  Aunt Addie, MALAIKA ADERO

  My Mother’s Mirror, CATHY ALTER

  Sister Travelers, MIRIAM DECOSTA-WILLIS

  Walking in Faith, COLLEEN (O’BRIEN) EVERETT

  The Echo of Loss, CLEYVIS NATERA

  Unforgettable, BRENDAN MCGEORGE O’BRIEN

  Bringing John Back Home, DANIEL C. POTTS

  83 Years of Immortality, NIHAL SATYADEV

  Tying Alan’s Shoes, WREN WRIGHT

  Sealed and Delivered, WREN WRIGHT

  Alzheimer’s in the Family, ANN MARSHALL YOUNG

  STRANGER THAN FICTION

  Introduction

  Sunrise, Sunset, EDWIDGE DANTICAT

  The Beaches of Hazel Sasso, HEATHER L. DAVIS

  New World, JULIE LANGSDORF

  Charlemagne, JOE A. OPPENHEIMER

  Diem Perdidi, JULIE OTSUKA

  Demented, LAUREN-FRANCIS-SHARMA

  Casting Stones, JULIA TAGLIERE

  Golden Anniversary, KATIA D. ULYSSE

  Contributor Biographies

  Acknowledgments

  Permissions Acknowledgments

  FOREWORD

  There’s a vapid joke that so many—so, so many—people have blurted out to me over the years immediately after I mention that I’m working on a book or film or podcast about Alzheimer’s: “Can you tell me again?—I’ve just forgotten what you’re working on . . .”

  If I had a nickel . . . But this ridiculous line has helped me to understand something fundamental: People *desperately* do not want to think about dementia if they don’t absolutely have to.

  This is our existential challenge, on top of all the awfulness of dealing directly with this disease. We have to find a way to tell everyone what they powerfully do not want to hear. We need people to understand what this disease is, in order to mitigate the loneliness, in order to build up our global infrastructure of caregiving, and in order to stop Alzheimer’s once and for all.

  Here is what’s so beautiful about this book: It is chock full of people sticking their necks out and telling their story. With clarity, with patience, with feeling, with faith. Greg and Daisy and Cathie and Malaika and so many others. They’re doing it because they have to, and because we need them to. They are the leading spears in this war. Behind them stand terrific organizations like UsAgainstAlzheimer’s and Cure Alzheimer’s Fund and CaringKind and TimeSlips and the Alzheimer’s Association. Together, we are finally seeing a true awakening. And we know our work is just beginning.

  Join us. Let us tell you our stories and then step forward to tell your own story. Be a part of the movement that will help manage this excruciating loss: the caregivers who thanklessly alter their lives to accommodate it; the artists who help us understand its depth; the activists who make noise; the writers and actors who help us convey its nuances and its toll; and the private philanthropists who dedicate their fortunes to fund unpopular research ideas.

  And, of course, the scientists. Though the public cannot yet taste its fruits, there has been much progress in Alzheimer’s r
esearch. We are much closer to a cure than we were a decade ago. We will stop this disease. In an age where our relationship to facts has suddenly become rather wobbly, we must robustly support these fact-gatherers, have faith in their methods, follow the truth wherever it takes us, and never, ever, ever give up hope.

  David Shenk

  Cohost of the podcast The Forgetting:

  Inside the Mind of Alzheimer’s

  Author of The Forgetting

  Creator of The Living with Alzheimer’s Film Project

  INTRODUCTION

  BY GEORGE VRADENBURG

  Nearly thirty years ago, my late wife’s mother called at 3 a.m. to complain about a strange man in her house. We rushed over, only to find that the “strange man” was my father-in-law. By the end of her life, my wife’s mother could no longer speak, move, or recognize her daughter. As with millions since, this fierce woman had been tragically swallowed up by the gaping maw of Alzheimer’s.

  It was experiences like this one that ultimately spurred my wife Trish and me to found UsAgainstAlzheimer’s, a disruptive advocacy and research organization that has been fighting to expand treatments and accelerate toward a cure for Alzheimer’s for nearly ten years. It was born out of our shared passion to beat back what is now the most devastating disease facing our population, economy, and society.

  We demanded action on the Alzheimer’s epidemic from senators, researchers, and the public—always with determination, grit, and, when needed, just the right touch of humor. Trish in particular had an immense gift for translating the pain and hardship associated with the disease into hopeful action—and she did it with the perfect combination of deep empathy and keen strategic thinking.

  A decade later, this movement has made progress, though not enough. We have increased funding for Alzheimer’s from the National Institutes of Health from $450 million to $2.4 billion; we have pressured Medicare to recognize Alzheimer’s as a chronic disease on par with diabetes and hypertension; and we have had legislative successes, including the recent reintroduction of the bicameral, bipartisan CHANGE Act and the passing of the EUREKA and BOLD Acts into law. Furthermore, emerging scientific research is telling us that there are proactive, risk-reducing steps we can all take around diet, exercise, and social engagement to build resilience against cognitive decline. Despite these achievements, Alzheimer’s remains the only top-ten disease in the United States without an effective treatment or cure, affecting 5.8 million diagnosed patients and 16 million caregivers at a massive cost of $290 billion annually.

  These are tragic numbers, but they are statistics. For those not directly impacted, it can be easy to forget that each of those combined 21.8 million people is an individual with a story, a family, and a circumstance that is uniquely theirs. Knowing these individuals, their backgrounds, and their situations humanizes what can so easily become a generic, arm’s-length conversation fraught with fear, stigma, and uncertainty. This can be even more true within communities of color, where the impact of the disease is disproportionate. (African Americans are twice as likely and Latinos are 1.5 times as likely to have Alzheimer’s.)

  That’s why books like this one are so important, and why I was so honored to be asked to write the introduction. The work contained here brings to life personal experiences with Alzheimer’s from across the world. It is real and deeply personal. It is at once heartbreaking, fearful, relatable, and funny but, most of all, human in its expression. It is a snapshot of experiences across the Alzheimer’s and dementia spectrum, and offers readers—whether personally familiar with the cruelty of this disease or not—a glimpse of life for those in the midst of the struggle.

  We will ultimately find a cure for this devastating disease. There’s reason to be hopeful. And as organizations like UsAgainstAlzheimer’s continue to fight, as individuals today continue the important work of Trish and so many others, advocating and pushing for a cure on behalf of those they know and those they don’t, we must never forget the fundamentally human piece of the Alzheimer’s tragedy. Work like this ensures that the individuality and uniqueness of those who have lost their identities to Alzheimer’s remain in our hearts through truly courageous work.

  INTRODUCTION

  BY MARITA GOLDEN

  The journey began with a story. A story I never expected to write. A fictional story about an African-American family impacted by Alzheimer’s disease. Four years in, I discovered as part of my research the disproportionate impact of the disease on African-American families. That discovery led to another kind of story, a piece of groundbreaking journalism about why African Americans are twice as likely as whites to develop Alzheimer’s and why they are so underrepresented in the clinical trials to find a cure. After the publication of the novel and the magazine story, I thought I was through. I expected Alzheimer’s to let me go. To allow me to return to my normal life. But it was too late. I now knew too much about the stigma attached to the disease, and the current and looming economic, cultural, and social shifts associated with dementias. I had met too many dedicated researchers and advocates for awareness of and a meaningful societal response to a disease that is the sixth leading cause of death in America. And mostly I had met too many people living with dignity with the disease and families who found in the process of caring for their loved ones amazing grace and strength and a transformational kind of love that made all things possible. It was too late. I had become an Alzheimer’s activist.

  Those families, those living with Alzheimer’s and other dementias, wove their way into the fabric of my life, and it is to them that I dedicate this anthology. The organization UsAgainstAlzheimer’s is a leading agitator, advocate, and creator of change in the fight against Alzheimer’s disease. As an African-American woman, I was deeply impressed by the organization’s commitment through its outreach networks to ensure that African Americans, women, Latinx, and other marginalized groups are at the center, seated at the table where decisions are made and questions asked that shape the public discourse and the research decisions about care and cures.

  Alzheimer’s is an irreversible, progressive brain disorder that slowly destroys memory and thinking skills and eventually the ability to carry out simple tasks. Five and a half million Americans have Alzheimer’s disease. There is no cure. Alzheimer’s is the most common form of dementia, of which there are numerous types; all of them affect mental cognition.

  George Vradenburg founded UsAgainstAlzheimer’s with his late wife, Trish.

  George is a visionary, a man with a mission, a genius at inspiring action and making change happen. In its nine years of existence the organization has had global impact. I am a child of the sixties—activism is in my DNA—so when I couldn’t forget those families and those individuals living with dementias, I knew I had received my next assignment. Writing for me is an act of dialogue not just with my imagination but with readers, society, and my own soul. If I can’t give a reader a new way to see the world, why write? And that is how this anthology, Us Against Alzheimer’s: Stories of Family, Love, and Faith, was born. All the royalties from this anthology will go to support the work of UsAgainstAlzheimer’s.

  I have learned much of what I know about Alzheimer’s disease from Dr. Goldie Byrd, director of the Maya Angelou Center for Health Disparities at Wake Forest University, as well as Stephanie Monroe and Jason Resendez of UsAgainstAlzheimer’s and John Dwyer of the Global Alzheimer’s Platform. They are among the army of dedicated people serving on the front lines in the fight against this disease.

  My goal with this project was simple yet ambitious: to capture in nonfiction and fiction narratives the wrenching experience of watching a loved one consumed by a disease that essentially kills them twice. Once as they forget who they are and then when their bodies succumb to the full-blown effects of dementia. But I mostly wanted to provide readers with a peek into what I had discovered in five years of research, that this cruel disease is as much about the spirit and heart of those it afflicts and their families as it is about
brain cells.

  Again and again, I was buoyed by the testimony of siblings, parents, and others who stood by and stood up for those with Alzheimer’s and were blessed by the experience. Blessed in the midst of sleepless nights and self-doubt and anger and grief. I’ll never forget the words of a young man on a panel at one of the annual UsAgainstAlzheimer’s conferences, describing how it felt, and how enlarged he had been by caring for his mother who in her mid-sixties was being claimed by dementia day by day. He spoke of having to give up his full-time job but also of tender moments and revelations and things said he had never expected. He told the audience, “I tell my siblings who leave most of the care of our mother to me, ‘You should come and get some of this. Before it’s too late.’”

  I am extremely proud of this project. I am proud of the immense generosity of the writers who eagerly donated their stories once I told them about UsAgainstAlzheimer’s. I am proud also that this is a multicultural collection. Alzheimer’s is a disease with global impact. The stories on these pages represent the experiences of writers from all over the US and from India, Trinidad, Haiti, and the Dominican Republic. The contributors are award-winning published authors, caregivers turned writers, Alzheimer’s activists, and those living with Alzheimer’s.

  This collection is divided into four sections, three of which represent the various seasons of the Alzheimer’s experience. In “Turning Points,” you’ll read accounts of the gradual realization of the immensity of dementia’s impact on families and relationships. How do you find your way through the dark and murky waters of denial and land on the shore of acceptance? How do you let go of the hope for a different reality and accept that there is no turning back, only more turning points? When are you prepared to ask for help, for yourself as one with the disease or as caregiver? How can you, how do you decide that assisted living or a dementia care unit is the only viable option? How do you move past guilt? These are the decisions that mark new chapters in an unfolding, confounding story.

  In “All That Remains,” the narratives address the discovery that the person with Alzheimer’s is more than the disease. Their world is one that has to be accepted and entered. All that remains is often much more than could be expected. To see all that remains requires a vision shaped by respect and love and the ability to live on Planet Alzheimer’s, to learn new rules and a new language.