Slow Dancing with a Stranger Page 16

  I am a person who does not quit once she embarks on something important. There is a price to pay for that type of determination and I’m living it. I apply the same passion to my advocacy. I suppose that Alzheimer’s is the final test of whether I can keep up such high standards for myself.

  I make no assumptions about what I am doing. I replay constantly whether what I say or do will resonate in any way. I question whether telling my story will make any difference to anyone. Sometimes I think that greater public awareness about Alzheimer’s, instead of reducing the ignorance and stigma, has actually increased it. Even those unlike Harvey, who announce defiantly to the world that they have early-onset Alzheimer’s, are often marginalized professionally and later socially. A dementia-friendly society is not yet in reach.

  There are academic scholars who argue that our fear of forgetting is irrational, a scare tactic of advocacy groups or businesses that want to sell anti-aging products. But I disagree. There is nothing irrational about our fear. Our fear matches the facts.

  I worry that people will be offended by my honesty about this disease. I don’t think I have done anything that other caregivers haven’t done for family and friends they love—though perhaps I have done it longer. But I claim no special expertise, and I refuse to pretend that my way is the right way. My advocacy is all about making sure no one ends up like me.

  Today has been emotionally exhausting and a bit unfulfilling. It is hard in this kind of study—stretching over years and years, the data not available to the participants—to truly feel that one is making a contribution. I long for a way to make research projects and trials more accessible to hundreds of thousands of us doing the same things over the years, all of us working together, a community of citizen scientists. I know that in time there will be an infusion of technology platforms that will make participation less cumbersome and the data more widely available to all who want to study it. Only then will we be able to reach the numbers of people needed to sustain prevention trials and long-term research.

  The young researcher reenters the room and interrupts my conversation with myself. She politely asks if I am interested in giving a blood sample for a companion study. I defer apologetically. For now, I have tested my own limits. It is time to get back home.

  It has been almost eight hours since I have checked in at home. The nurses knew that I would be offline, but they had the number to the testing lab in case of emergency. No urgent e-mails or text messages pop up on my screen. I check in anyway. After so many years, I can’t imagine the feeling when I won’t need to constantly check in—when I won’t be needed in such a personal and intimate way. Is that what freedom from Alzheimer’s will look like?

  A few years ago, I read a study reporting that the public’s second biggest fear, after getting Alzheimer’s, is being a caregiver. I understand this feeling, and yet it is demoralizing. I became an advocate because I can’t handle the pain any other way.

  I’ve timed it right and arrive home just in time for the night shift. Grateful that Harvey and my mother have been put to bed a bit early, I listen to the nurse’s report of the day. Harvey’s vital signs are stable. He seems to be resisting nourishment, but it may just be getting more difficult for him to swallow without choking. We can only observe and guess. The nurses administer liquids through an eye dropper to hydrate him. My preference when on duty at night is to sip the liquid first, then softly kiss him, letting its wetness and warmth pass between us. When he opens his mouth for more, I like to imagine that it gives him pleasure but given the reality of the disease, I have no way to know. I do it anyway just in case.

  Tonight I will shut out the light in the room for the first time in years. I used to leave it on to comfort him, but the doctors recently told me that his brain is shutting down. There is no fear left.

  I undress, taking my place beside him, and whisper out loud. Would he be amused that I now share his passion for science, where before we lived in such separate worlds? Would he be proud that I have become such a strong supporter of researchers just like him, who never give up on their patients?

  I thank him for being my teacher for all things that matter in life: love, loyalty, and family.

  Harvey and I have been slow dancing with a stranger for years. Alzheimer’s captured us both. It destroyed a wonderful mind and our life together. I have learned not to fight its strangle hold, but that has not stopped me from trying to escape it in other ways. Is it just a matter of time before I am next on its dance card?

  When I stare in the mirror, I see only exhaustion and twenty years lost. I am still looking for the same thing I wanted when I first learned that Harvey had Alzheimer’s disease: a way out for us all.

  Am I repeating myself?

  These days I rarely leave the house. I work by his bedside and keep up through conference calls. When I left in the morning for Boston, I kissed him, as I always do, as if it were the last time. I like to think we communicate through touch and that, even at this late stage in the disease, he can decode my messages of unconditional love. What I cannot hide in my touch is the enveloping and unspoken melancholy between us. I cannot save him.

  I have no regrets that I insisted we do hospice at home or that I chose not to have strangers touch him in his waning days. If touch is the first sense we acquire, then I want the last touch he feels to be mine. I’ve earned it.

  Acknowledgments

  My story would never have made it to the printed page without the perseverance, patience, prodding and support of a number of individuals, who believed in its value to the national Alzheimer’s dialogue and had confidence in my ability to tell it.

  MY SINCERE APPRECIATION AND GRATITUDE

  To my literary agent Will Lippincott, who called me the day after our story aired on PBS in August 2006 to encourage me to write a book. I resisted his thoughtful, yet persistent calls for five years. I am not sure either of us remembers exactly how or when he won me over.

  To Gideon Weil, an inspiring Executive Editor at Harper One, who took a chance on a first time author; then nurtured and coached me through the entire editing and publishing process, even though I think that I am old enough to be his mother.

  To Amy Dockser Marcus, a Pulitzer Prize–winning Wall Street Journal science and health reporter and personal friend, who offered caring, but critical feedback, and talked me through writer’s block while challenging me to stay true to my narrative and lose the writing crutch of metaphors.

  To Alun Davies, a revered figure in the publishing industry, who offered me insights into how his world works and honored me with a generous offer and masterful eye to read and critique my unfinished manuscript.

  To Dr. Joseph G. Perpich, M.D., JD, psychiatrist and creator of the Virtual Collaboratory, whose eloquent notes on my manuscript will forever be cherished by this first time author.

  To Harry Wade, a professional colleague and early collaborator, without whose assistance my original book proposal would still be languishing in a drawer somewhere.

  To the entire team at HarperOne for their seamless support—Suzanne Wickham, Claudia Boutote, Mark Tauber, Hilary Lawson, Alison Petersen, and Jennifer Jensen.

  HONORING OUR DONOR AND CELEBRATING THE MISSION

  To Tom Hutton, Trustee of the Geoffrey Beene Foundation and sole donor for the Geoffrey Beene Foundation Alzheimer’s Initiative, for a generous opportunity of a lifetime to help make a difference in Alzheimer’s awareness and early diagnosis.

  To my dream team GBFAI Board, chaired by George Vradenburg and Dr. William Haseltine, who have advised and challenged me to seek out the most innovative and catalytic projects to advance our mission.

  A special shout out to my colleagues at Geoffrey Beene, LLC who keep the vision and spirit of the legendary designer on the cutting edge of fashion and philanthropy.

  TO THOSE ABOUT WHOM I CAN’T AND DIDN’T SAY ENOUGH

  I could have written volumes about my family, friends, and colleagues who each deserved a chapter all their ow
n.

  To my family—Jason, Dana, Hope, Eli, and Ben, who are the sun, moon, and stars of my life. Thank you for your unwavering love and support and not giving Mom a hard time about sharing our very private journey with Alzheimer’s on the chance it might be able to help others. For the record, the real author in our family is my daughter-in-law Dana, with five children’s books and a novel, A Year to Last a Lifetime.

  To Trish and George Vradenburg, who embrace me in their lives as an intimate friend, shore up my courage in tough times, and lead with unrelenting passion our fight to stop Alzheimer’s by 2020.

  To my glorious and talented women friends—Lisa Colburn, Michette Kapnist, Lin Arison, Judy Weiser, Ginny Mancini, Jeanette Longoria, Rita Salzman, Rita Hortenstein, Bonnie Osher, Diane Perella, Arlene Herson, Florine Mark, Anastasia Beauscher, and Joan Challinor. Thank you for your loyalty, laughter, advice whether I ask or not, and open invitations to share your lives to underscore that I am not alone.

  To the next generation philanthropists and spirited Alzheimer’s advocates who will make their mark getting us to a cure: Leeza Gibbons, Karen Segal, Simone Friedman Rones, Lisa Spikell, and all the founding members of WomenAgainstAlzheimers.org.

  And my personal gratitude and appreciation to all of you who cared enough personally or from a policy perspective to read this book and connect it with your own story or mission.

  THE POWER OF US

  USAgainstAlzheimers and its family of Networks:Women AgainstAlzheimer’s, ResearchersAgainstAlzheimer’s, African-AmericansAgainstAlzheimer’s, HispanicsAgainstAlzheimer’s, ClergyAgainstAlzheimer’s, and ActivistsAgainstAlzheimer’s.

  About the Author

  MERYL COMER, an award-winning thirty-year veteran reporter, producer, and talk show host, is President and CEO of the Geoffrey Beene Foundation Alzheimer’s Initiative.

  Comer was among the first TV newswomen in the 1980s to specialize in business news as it relates to public policy with a nationally syndicated debate show, It’s Your Business. She also co-anchored Nation’s Business Today for six years on ESPN and the ten o’clock news for Metromedia.

  Winner of the 2005 Shriver Profiles in Dignity Award and the 2007 Proxmire Award, Ms. Comer has provided testimony before Congress, served on the 2008 Alzheimer’s Study Group, and served two terms on the National Board of the Alzheimer’s Association. She is a founding member of USAgainstAlzheimer’s and cofounder of Women Against Alzheimer’s Network.

  In 2012, Comer led the formation of “The 21st Century BrainTrust™,” a nonprofit alliance focused on wireless cognitive tracking and optimal brain health.

  Comer has been the at-home caregiver for the past nineteen years for her husband with early-onset Alzheimer’s disease and her mother with late-stage dementia. Her story has been profiled in the The Washingtonian and in More magazine and has been featured on PBS NewsHour and ABC Nightline with Terry Moran.

  One hundred percent of proceeds from her book Slow Dancing with a Stranger will support Alzheimer’s research.

  Visit www.AuthorTracker.com for exclusive information on your favorite HarperCollins authors.

  Praise for Slow Dancing With a Stranger

  “In an unvarnished account of caring for a husband with dementia, Meryl Comer lays out the struggles and gallantry of a devoted and remarkable caregiver.”

  —PETER RABINS, M.D., MPH,

  Professor of Psychiatry and Behavioral Sciences, Johns Hopkins School of Medicine and author of The 36-Hour Day

  “No silver linings, no phony homages to ‘spiritual growth.’ Meryl Comer in Slow Dancing with a Stranger writes the unvarnished reality of being exposed as a wife, daughter, caregiver, and potential Alzheimer’s victim herself. Admire her bravery and honesty and applaud her for taking away some of the loneliness of the long distance caregiver.”

  —ELLEN GOODMAN,

  Pulitzer Prize–winning, nationally syndicated columnist and author of Turning Points, Value Judgments, and Paper Trail: Common Sense in Uncommon Times

  “Slow Dancing with a Stranger is a remarkable and moving story that will change the way our generation thinks about how we deal with aging and caring for those we love. An amazing journey of caring, love, and resilience.”

  —TOM RATH,

  New York Times bestselling author of StrengthsFinder 2.0, How Full Is Your Bucket?, Strengths Based Leadership, and Eat Move Sleep

  “Meryl Comer in Slow Dancing with a Stranger unveils Alzheimer’s Disease in a remarkable and vulnerable way. Her personal story provides knowledge, inspiration, and hope to us all. Her heroism jumps out from the pages and hopefully will motivate generations to make a difference against this horrible disease.”

  —DAVID B. AGUS, M.D.,

  Professor of Medicine and Engineering, University of Southern California and author of The End of Illness and A Short Guide to a Long Life

  “Meryl Comer was the recipient of the Sargent and Eunice Shriver Profiles in Dignity Award in 2004 for her work as a dedicated advocate and remarkable, decade-long caregiver to her husband with early-onset Alzheimer’s. Fast forward a decade later. In Slow Dancing with a Stranger, Meryl shows what it truly means to stay the course.”

  —MARK K. SHRIVER,

  Senior Vice President, Save the Children and author of A Good Man: Rediscovering My Father, Sargent Shriver

  “Meryl Comer is a true trailblazer in every aspect of Alzheimer’s disease, from nearly twenty years of personal experience in caregiving to leading some of the most exciting and innovative programs for raising public awareness. Her spirit shines through in this exceptional new book chronicling her long and winding journey with this devastating disease.”

  —DR. RUDY TANZI,

  New York Times bestselling author of Super Brain and Joseph P. and Rose F. Kennedy Professor of Neurology, Massachusetts General Hospital and Harvard Medical School

  “Slow Dancing with a Stranger is the story of how Meryl Comer became an Alzheimer’s caregiver . . . with no warning, no specific training, and no choice. Read this book to understand Alzheimer’s but cherish it for the story it is, and you will find that every page breathes with her courage.”

  —BARRY PETERSEN,

  CBS News Correspondent and author of Jan’s Story: Love Lost to the Long Goodbye of Alzheimer’s

  “With her trademark honesty and class, Meryl Comer shares her struggles and triumphs in dealing with Alzheimer’s, one of life’s most devastating diseases. In Slow Dancing with a Stranger, she charts paths that others can follow and recharges the public conversation about a pending global epidemic.”

  —MARIA FREIRE, PH.D.,

  President and Executive Director, Foundation for the National Institutes of Health

  “Meryl Comer’s heart-wrenching story will resonate with the millions of families who know the devastation of Alzheimer’s disease firsthand. Her journey makes a powerful and compelling case for the urgent need to support Alzheimer’s prevention trials.”

  —REISA SPERLING, M.D.,

  Professor of Neurology, Harvard Medical School and director of the A4 Study

  “This poignant and compelling book is a wake-up call to how Alzheimer’s disease can blindside and destroy our efforts to ‘age-proof’ our lives. Written with great insight and tenderness, Slow Dancing with a Stranger is both a cautionary tale and a call to arms as Meryl Comer helps lead the charge to beat this horrific disease before it beats us.”

  —KEN DYCHTWALD, PH.D.,

  CEO of Age Wave and author of Bodymind, Age Wave, Age Power: How the 21st Century Will be Ruled by the New Old, and A New Purpose

  “Meryl Comer is one of my heroes. With unflinching courage, candor, and determination, she eloquently underscores the terrible toll that Alzheimer’s takes on patients and families and the urgent need for us to address this unacceptable problem once and for all.”

  —ERIC M. REIMAN, M.D.,

  Executive Director, Banner Alzheimer’s Institute and Professor of Psychiatry, University of Arizona

>   “Slow Dancing with a Stranger is a poignant story of Alzheimer’s disease robbing memory, personality, life, and dignity. It is an astonishing testimony of a determined woman who decided to fight this disease and to mobilize the world to come up with a cure, a battle to which we all must contribute and win for our parents, ourselves, and future generations.

  —PROFESSOR DR. ANDREA PFEIFER,

  CEO of AC Immune

  “As a physician-scientist who has studied Alzhiemer’s Disease for more than twenty-five years, and a son with a 99-year-old mom with Alzheimer’s dementia, I recommend this book to anyone who is struggling with the tormenting issues of Alzheimer’s care.”

  —MICHAEL E. WIENER, M.D.,

  ADNI Principal Investigator and Professor of Medicine, Radiology, Psychiatry, and Neurology at the University of California, San Francisco

  “Meryl Comer’s account of her family’s struggle with Alzheimer’s is a page-turner; it is wrenching, soul-baring, and beautifully written. It should shock the nation into providing more support—both for Alzheimer’s research and treatments and for the legions of family caregivers who will bear ever-growing burdens in the future.”

  —SUSAN DENTZER,

  Senior Policy Adviser to the Robert Wood Johnson Foundation

  “Meryl Comer’s Slow Dancing with a Stranger takes us into the tragedy that is Alzheimer’s disease and shows what is ahead for nearly half of us who live to age 85. We must respond to this emergency and Meryl courageously shows us why.”

  —JEFFREY CUMMINGS, M.D., SCD,

  Director of the Cleveland Clinic Lou Ruvo Center for Brain Health and

  KATE ZHONG, M.D.,

  Senior Director for Research

  “In Slow Dancing with a Stranger, Meryl Comer shows us how to acknowledge and endure what on first blush is not endurable, a family afflicted with Alzheimer’s. Although she would say she doesn’t deserve the recognition, she definitely deserves the ‘Rock Star of Humanity’ award for her caregiving and her humanitarian work.”