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Voices of Alzheimer's: The Healing Companion: Stories for Courage, Comfort and Strength (Voices Of series) PDF

289 Pages·2007·2.42 MB·English
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Alzheimer’s diseAse: An As-Yet incurAble condition thAt sloWlY strips its victims of their memories, their essence, their lives. v voices of Alzheimer’s offers An intimAte look into the Worlds of o reAl stories reAl people some of the millions Who Are touched bY this insidious diseAse: i c e s A couple’s 60-YeAr stAnding on the brink A civil rights Activist love AffAir fAces its of the unknoWn, A retAins his fighting o biggest chAllenge recentlY-diAgnosed spirit even As he When Alzheimer’s Alzheimer’s pAtient sloWlY loses touch f voices of enters their lives. bids A touching With his dYnAmic pAst. Alzheimer’s fAreWell to fAmilY, A friends And memories. l z the heAling compAnion: h stories for courAge, comfort And strength voices of fAcing the rAvAges Alzheimer’s e of Alzheimer’s, An i estrAnged fAther And is filled with touching, enlightening and inspiring true m stories of lives transformed. Written by patients, their dAughter rediscover friends, families, and caregivers from all walks of life, e A love thAt cAn’t be these very personal accounts offer unparalleled insight r destroYed. into the ways families and professionals care for both the patient and themselves, gain a deeper understanding of ’ their personal relationships, and learn to come to terms s with the end of life. edited by the healing project, voices of Alzheimer’s also contains up-to-date medical information by top authorities in the fields of treatment and research. With contributions from 24’s penny Johnson Jerald, star trek voyager’s kate mulgrew and david shenk, best-selling author of the forgetting, voices of Alzheimer’s is a moving tribute to the e enduring strength of the human spirit. d l it A e c d h b A Y n the profits from the sale of this book will be donated to the healing project, t h c a not-for-profit organization founded in 2005 dedicated to creating a community of support for e e h those challenged with chronic and life-threatening illnesses. www.thehealingproject.org e p A u l $16.95 (CAN $22.95) in bl g i p s r h o i J n With contributions bY: e c g t dAvid shenk, best selling Author of the forgetting, kAte mulgreW, stAr of stAr trek: voYAger, lAchAnce publishing 24’s pennY Johnson JerAld And the Alzheimer’s AssociAtion voices_alz_final.indd 1 2/28/08 2:39:33 PM Voices of Alzheimer’s The Healing Companion: Stories for Courage, Comfort and Strength Edited by The Healing Project www.thehealingproject.org “Voices Of” Series Book No. 2 LACHANCE PUBLISHING • NEW YORK www.lachancepublishing.com Copyright © 2007 by LaChance Publishing LLC ISBN 978-1-934184-18-9 Victor Starsia Managing Editor Richard Day Gore Editor All rights reserved. Printed in the United States of America. No portion of this book may be reproduced—mechanically, elec- tronically, or by any other means, including photocopying—with- out the express written permission of the publisher. Library of Congress Control Number: 2006936116 Publisher: LaChance Publishing LLC 120 Bond Street Brooklyn, NY 11217 www.lachancepublishing.com Excerpts from The 36-Hour Day, third edition: A Family Guide to Caring for Persons with Alzheimer’s Disease, Related Dementing Illnesses, and Memory Loss in Later Life. Pp. 209, 213, 214, reprinted with permission of Mace, Nancy L., and Peter V. Rabins, M.D., M.P.H., foreword by Paul R. McHugh, M.D. © 1999 The Johns Hopkins University Press. This book is available at special discounts for bulk purchases for sales promotions or premiums. Special editions, including person- alized covers, excerpts of existing books, and corporate imprints, can be created in large quantities for special needs. For more information, write to LaChance Publishing, 120 Bond Street, New York, NY 11217 or email [email protected]. All things have a beginning, although sometimes the journey from beginning to end is not always so clear and straightforward. While work on Voices Of began just two years ago, truth be told, the seeds were planted long ago by beloved sources. This book is dedicated to Jennie, Larry and Denise, who in the face of all things good and bad extended courage and support in excess. And especially to Richard, who taught us by the way he lived his life that anything is possible given enough time, hard work and love. Contents Foreword: David Shenk . . . . . . . . . . . . . . . . . . . . . . . . . . . . . ix Introduction: The Healing Project Debra LaChance, Founder . . . . . . . . . . . . . . . . . . . . . . . . . xi Research Hits Home Michael S. Wolfe, Ph.D. . . . . . . . . . . . . . . . . . . . . . . . . . . xxi No Kidding Charles E. McGhee . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xxv Acknowledgments . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . xxvii Part I: THE PARENTS Mothering Mother Carol O’Dell . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 3 Big Dan Danny Simmons . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7 The Stolen Goodbye Kate Williams . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13 Language of Loss Marjorie Carlson Davis . . . . . . . . . . . . . . . . . . . . . . . . . . 17 Between the Synapses Eileen Key . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 21 THE HEALING PROJECT v VOICES OF ALZHEIMER’S THE HEALING PROJECT vi VOICES OF ALZHEIMER’S The Treasure in Care Giving Marie Ellen Alberti Galasso . . . . . . . . . . . . . . . . . . . . . . . . 27 It Isn’t the End of the World Barbara Jeanne Fisher . . . . . . . . . . . . . . . . . . . . . . . . . . . . 31 Dancing Shoes Marguerite R. Greenfield . . . . . . . . . . . . . . . . . . . . . . . . . . 35 Caught in the Net Kate Mulgrew . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 41 Assessment Number Two Maryann Lesert . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 45 Mary’s Life, Mary’s Death Aaron Liebowitz . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 53 Acquaintance Marsha Kostura Schmidt . . . . . . . . . . . . . . . . . . . . . . . . . . 59 Once Upon a Memory Carol Bogart . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 65 Mom Had Alzheimer’s Ruth A. Brandwein . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 73 Whoosh! Judy Kronenfeld . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 79 Alzheimer’s, Artichokes, and Forgiveness Ihla Nation . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 87 Losing My Father Brenda van Dyck . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 91 Dad’s Private Police Catherine A. Johnson . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 97 The Art of Memory and Belonging Tovli Simiryan . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 101 THE HEALING PROJECT vii VOICES OF ALZHEIMER’S Part II: THE SPOUSES Rebirth Barbara Pearson Arau . . . . . . . . . . . . . . . . . . . . . . . . . . . 111 Letting Go Elizabeth Van Ingen . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 115 Before His Time: The Strange Case of the Missing Salmon Maggie B. Dickinson . . . . . . . . . . . . . . . . . . . . . . . . . . . . 123 Behind Lace Curtains Kali J. VanBaale . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 131 For the Love of Rose Susan Melchione . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 135 Teacher’s Pet Sandy McPherson Carrubba . . . . . . . . . . . . . . . . . . . . . . 141 Part III: THE GRANDPARENTS Wherever He Goes, I Will Follow Amy Shore . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 149 Love, the Greatest Gift of All Julie Sieving . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 157 Bridging Fact and Perception Lyn Michaud . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 161 The Wedding Crasher Penny Johnson Jerald . . . . . . . . . . . . . . . . . . . . . . . . . . . . 167 Times You Don’t Remember… Times I Won’t Forget Christina Fuller . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 169 Grampa Forgets Marcia Berneger . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 175 THE HEALING PROJECT viii VOICES OF ALZHEIMER’S Grandma’s Love Tamara Scully . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 179 The Alzheimer’s Journey Dawn Eason . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 185 Firehouse Claire Carpenter . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 191 Part IV: THE CAREGIVERS Finding Comfort, Strength and Inspiration Francine Siegel . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 199 Breaking up with My Gardenia Valerie M. Smith . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 203 Goodness Knows Ruth Jones . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 209 They Wanted Me to Tell You Deborah Attix, Ph.D. . . . . . . . . . . . . . . . . . . . . . . . . . . . . 213 Is My Mother Still Alive? Judith Terzi . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 217 Healing Touch Lois Vidaver . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 227 Another Dementia Ronnie Rom . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 231 Afterword: 10 Warning Signs of Alzheimer’s Disease The Alzheimer’s Association . . . . . . . . . . . . . . . . . . . . . . 235 Alzheimer’s Disease and a Look to the Future Maria Torroella Carney, MD . . . . . . . . . . . . . . . . . . . . . . 239 Resources . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 253 Foreword David Shenk O In these rich pages, you will find anger, acceptance, bewilderment, determination, compassion, and lots and lots of love. Alzheimer’s is amongst the worst of afflictions, but it brings out the very best in people. Though I haven’t yet had to face the disease in my own family, it has been my honor and privilege to be a part of the Alzheimer’s community for almost a decade. There’s plenty of loss and sadness, to be sure, but what really shines through is the well- spring of humanity. It is simply inspiring. In my writing, filmmaking and speaking, I’ve made it my mission to help people better understand the disease. Families have an especially vexing experience if they don’t know at least the funda- mentals—what the disease does to the brain and how it travels around its various regions. By the same token, though, no doctor or scientist or social worker or legal advisor can possibly have a clue about Alzheimer’s until they’ve spent gobs of time with patients and their families. Office visits just don’t convey the exploding reality of how this disease unravels actual lives. But these pages do. Here you will soak in not just the predictable heartache but also the eloquent landscape of decline. Each page evokes a common experience, and yet speaks to every person’s unique mark on the earth. THE HEALING PROJECT ix VOICES OF ALZHEIMER’S

Description:
Written by those touched by the disease, this collection of more than 50 stories recounted by the spouses, victims, caregivers, friends, and family members provides a look at their journeys and serve as a companion to those currently struggling to cope with Alzheimer’s. The contributors write wit
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