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

289 Pages·2007·2.42 MB·English

by  The Healing Project

Alzheimer’s diseAse: An As-Yet incurAble condition thAt sloWlY
strips its victims of their memories, their essence, their lives.
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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:
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A couple’s 60-YeAr stAnding on the brink A civil rights Activist
love AffAir fAces its of the unknoWn, A retAins his fighting
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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
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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
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friends, families, and caregivers from all walks of life, e
A love thAt cAn’t be these very personal accounts offer unparalleled insight
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destroYed. into the ways families and professionals care for both the
patient and themselves, gain a deeper understanding of
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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
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the profits from the sale of this book will be donated to the healing project, t
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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