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State University of New York Press - Nancy Avery Dafoe

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108 pages

English

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In this evocative memoir, Nancy Avery Dafoe shares the heart-wrenching experience of caring for her ailing mother as she struggled, and ultimately lost her battle, with Alzheimer's disease. Weaving poetry throughout, Dafoe tells her family's story in the hope of helping those who are navigating the murky waters of Alzheimer's. She presents different approaches and practical advice for dealing with the difficult life transition that occurs when parents become ill. At its center, An Iceberg in Paradise is not only a tribute to love in the face of loss but also an exploration of memory, our human connections, and holding on until there is nothing left to hold.
List of Illustrations
Foreword by Ralph Hesse
Acknowledgments
A Note on the Title
Introduction: After the Fall

1. Uncertainty

2. Why Now? Why My Family?

3. Secrets

4. Mistaken Identities

5. Early Signs and Symptoms

6. You Look Like Your Mother

7. There’s a Tornado in My Head

8. Helping the Doctor

9. Icebergs in Paradise

10. Managing at Home

11. What Would She Have Chosen?

12. Did You See The Notebook?

13. What Not to Say

14. Managing in a Nursing Home or Assisted Living Facility

15. Collecting Memories

16. Her Legacy

17. Shadows

Appendix A: Turning to the Web
Appendix B: Texts on the Subject

Index of Poems
Notes
About the Author

Sujets

Vie de famille

Santé familiale

Soutien psychologique et conseils familiaux

Memoir

Informations

Publié par	State University of New York Press
Date de parution	08 janvier 2015
Nombre de lectures	0
EAN13	9781438455457
Langue	English

Informations légales : prix de location à la page 0,1498€. Cette information est donnée uniquement à titre indicatif conformément à la législation en vigueur.

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An Iceberg in Paradise
An Iceberg in Paradise
A Passage through Alzheimer’s
Nancy Avery Dafoe
Cover art courtesy of Matthew Cincotta.
Published by State University of New York Press, Albany
© 2015 State University of New York
All rights reserved
Printed in the United States of America
No part of this book may be used or reproduced in any manner whatsoever without written permission. No part of this book may be stored in a retrieval system or transmitted in any form or by any means including electronic, electrostatic, magnetic tape, mechanical, photocopying, recording, or otherwise without the prior permission in writing of the publisher.
Excelsior Editions is an imprint of State University of New York Press
For information, contact State University of New York Press, Albany, NY
www.sunypress.edu
Production, Eileen Nizer
Marketing, Kate Seburyamo
Library of Congress Cataloging-in-Publication Data
Dafoe, Nancy Avery.
An iceberg in paradise : a passage through Alzheimer’s / Nancy Avery Dafoe.
pages cm
Includes bibliographical references and index.
ISBN 978-1-4384-5544-0 (pbk. : alk. paper)
ISBN 978-1-4384-5545-7 (ebook)
1. Avery, Phyllis—Mental health. 2. Alzheimer’s disease—Patients—United States—Biography. I. Title. RC523.2.D34 2015 616.8′310092—dc23 [B] 2014014917
10 9 8 7 6 5 4 3 2 1
This book is dedicated to Phyllis Marie Unold Avery and Emerson Roy Avery Sr.
Contents
List of Illustrations
Foreword by Ralph Hesse
Acknowledgments
A Note on the Title
Introduction: After the Fall
Chapter One: Uncertainty
Chapter Two: Why Now? Why My Family?
Chapter Three: Secrets
Chapter Four: Mistaken Identities
Chapter Five: Early Signs and Symptoms
Chapter Six: You Look Like Your Mother
Chapter Seven: There’s a Tornado in My Head
Chapter Eight: Helping the Doctor
Chapter Nine: Icebergs in Paradise
Chapter Ten: Managing at Home
Chapter Eleven: What Would She Have Chosen?
Chapter Twelve: Did You See The Notebook ?
Chapter Thirteen: What Not to Say
Chapter Fourteen: Managing in a Nursing Home or Assisted Living Facility
Chapter Fifteen: Collecting Memories
Chapter Sixteen: Her Legacy
Chapter Seventeen: Shadows
Appendix A: Turning to the Web
Appendix B: Texts on the Subject
Index of Poems
Notes
About the Author
Illustrations
Figure 1. Phyllis Marie Unold and Emerson Roy Avery Sr. are shown in this photo taken shortly after the end of World War II, at what might have been their wedding but was instead a formal dance where their courtship and long journey together began.
Figure 2. At the age when many American students graduate from high school, my father was flying over Africa during World War II.
Figure 3. Our young mother Phyllis Marie is shown with me (on her lap) and my sister.
Figure 4. My young father is shown feeding me and my older sister ice cream when I was one year old.
Figure 5. Emerson Roy Avery Sr. and Phyllis Marie Avery are shown together in a brief moment of peace in this photo on their last trip to their camp in Quebec, Canada.
Foreword
Our brain offers us the capacity to self-reflect through the clarity of consciousness. When this is lost, we are lost, and such is the devastation of Alzheimer’s disease. With most any other disease, even those that are progressive and inevitably fatal, as with some cancers or motor disorders, we can execute some measure of control through strength of mind. We choose a strategy of action to fight the disease, adopt an attitude, look back on the joys and sorrows of our lives, and plan how to live our last days. But with Alzheimer’s, as the disease progresses our awareness fades, and the very patchwork of personality fractures, leading to behaviors and moods that are unexpected and uncharacteristic. We lose our capacity to cope and even lose the ability to express the fears and frustrations that beset us as our grasp of reality becomes ever more precarious. In short, we become helpless—and finally don’t even realize it.
And so, with Alzheimer’s disease, more so than with any other disease, it is up to others to provide the person with comforts, supports, and the overall logistics of living. The front line of these supports is usually given by the family. As poignantly expressed by Dafoe, the journey of care by family can be permeated with the landmines of guilt, misunderstandings, embarrassments, and frustrations. But it need not be such a perilous journey. We may grieve, but we shouldn’t have to despair.
There is no cure for Alzheimer’s disease as of this writing. Indeed, the past two decades have seen a string of profound disappointments in the medical field in this area. Pharmacological supports such as Namenda and Aricept have only mildly delayed the inevitable progressive symptoms of Alzheimer’s, and hopeful new medications have proven to be false leads time and time again. Against this backdrop of failure, many doctors feel a sense of helplessness when treating a patient. “There is nothing we can do” seems the implied, if not overt, attitude. And yet there is everything we can do! The treatment of every disease, every condition, has two parts: the clinical side involves medical interventions and strategies designed to relieve the symptoms. But the other side, our attitude (and society’s attitude) toward the disease is just as vital. We are, to some extent, as incapacitated and “sick” as others allow and perceive us to be, and it is here that we can do so much to help those with Alzheimer’s.
If your spine is broken and you require a wheelchair, your condition is far better now than it was in 1920. You are, in a sense, far less disabled today. Why is that? Certainly not because we can now medically fix a broken spine or that people today with broken spines have superior physical movement. It is because our culture has progressively accepted and supported people who cannot walk, and this acceptance has, in turn, enhanced the quality of life for anyone requiring a wheelchair. There is little if any anger when someone in a wheelchair is first to board a plane or is entitled to a parking space close to a business. But what happens when a person with Alzheimer’s disease pushes to the front of a line when boarding a plane while yelling, “Get out of my way!”?
Society is more forgiving and understanding of physical disability than of cognitive disability. There are many reasons for this discrepancy in attitude. Among them is the primarily subconscious dynamic of rejecting in others what we most fear ourselves. Most, if not all of us, are more terrified of losing our minds than of losing our legs. It is not easy to work on accepting a disease in others that we are too frightened to consider having ourselves. Another reason why society is more accepting of physical disabilities than cognitive disabilities is because physical disabilities are far more clearly noticeable. How many of us even think of the possibility that the elderly person pushing to the front of the line might have Alzheimer’s disease? Indeed, the invisibility of the decline of mental capacity fools even those closest to the person suffering from it, as Dafoe clearly illustrates with herself and her own family.
Unfortunately, even when Alzheimer’s is recognized by family members, this insidious disease allows them to hide the condition from friends and acquaintances, often at great cost. Bad behavior is perceived as bad behavior, and the person exhibiting it must take ownership of those gestures and that language. The slow and hidden progress of Alzheimer’s lends itself to a rejection of having it, and with that rejection, how can we move on to assure that others treat the sufferer with kindness?
Dafoe chronicles these misunderstandings and other perils of providing support for her mother while offering the reader the many ways we can better “treat” Alzheimer’s disease. Most importantly, we are consistently reminded of her mother’s humanity. Perhaps this is the most important lesson of all. We need to learn that a person with Alzheimer’s is the sum total of everything he or she has been, not the product of current status. We are thus treated to the sum total of Phyllis Marie Avery. She was a loving mother, a devoted wife, a dedicated teacher, a lover of books, a skilled journalist, an introspective thinker, a cook, a bridge player, and so much more.
We must accept when someone has Alzheimer’s disease because we really have no choice, but, in so doing, we need to view it as a passage rather than an end product, and we should be open to its existence if we expect and ultimately demand that others support those who have it. There is not yet a “cure” for Alzheimer’s disease, but there are many ways that we can make its passage one of dignity and respect. Its tragic consequences need not be compounded by our fear and ignorance but instead can be softened by our compassion and understanding.
Ralph Hesse
Psychologist
About the Author of the Foreword
Ralph Hesse currently teaches psychology at the State University of New York at Cortland and at Tompkins-Cortland Community College (TC3) in Dryden, New York. He is retired from his position as a psychologist at the Developmental Services Office in Cortland, New York. Hesse has facilitated a support group for individuals who are caregivers for persons with Alzheimer’s disease, doing so for the previous six years at Walden Place, an assisted living facility, in Cortland, New York.
Acknowledgments
Hesitating before committing this personal narrative to paper, I considered Vladimir Nabokov’s words in his autobiography Speak, Memory , in which he waited before writing in order, “to avoid hurting the living or distressing the dead.” 1 Part of me was profoundly reluctant to go back over that ground, return to some of the ugliness that accompanied the journey through my mother’s illness and father’s death as a result of Alzheimer’s disease. When I began to experience the power of healing thr