Caregiving

Beth Witrogen McLeod

Description

Helping your family and loved ones when they need you most

"Caregiving has a big heart-on a much-needed topic. A rare book of spiritual and practical wisdom."
—Sue Bender, author of Plain and Simple and Everyday Sacred

"A poignant, wise, and in-the-trenches view of caregiving that is both practical and spiritual, especially of value to midlife adults."
—Jean Shinoda Bolen, M.D., author of Goddesses in Everywoman and Close to the Bone

"Lovely. . . . Beth McLeod's experience and wisdom shine through as she shares her heartfelt journey of loss, surrender, hope, and healing."
—David Simon, M.D. medical director, the Chopra Center for Well Being, author of Vital Energy and Return to Wholeness

Sooner or later it will touch us all: A family member or loved one becomes ill or disabled, and we step in to help. This is caregiving, and in this powerful, unique book, prizewinning writer and advocate Beth Witrogen McLeod leads us through the caregiving journey with unflinching authority and compassion. Framed by the author's personal odyssey as a caregiver and richly informed by the inspiring and poignant tales of others, Caregiving explores medical and financial problems, all aspects of spirituality, and such issues as depression, stress, housing, home care, and end-of-life concerns. A rare blend of powerful storytelling and practical information, Caregiving is a revelation.

Sujets

• Médecine
• Spécialités médicales
• Caregiving
• Medical
• Caregiver

Informations

• Publié par: Turner Publishing Company
• Date de parution: 04 août 2000
• Nombre de lectures: 0
• EAN13: 9781630260637
• Langue: English

Extrait

Caregiving

The Spiritual Journey of Love, Loss, and Renewal
Beth Witrogen McLeod

John Wiley Sons, Inc.
New York Chichester Weinheim Brisbane Singapore Toronto
This book is printed on acid-free paper.
Copyright 1999 by Beth Witrogen McLeod. All rights reserved Published by John Wiley Sons, Inc. Published simultaneously in Canada
The author gratefully acknowedges permission to use the following: I saw grief, from Birdsong: 53 Short Poems , by Rumi, translated by Coleman Barks. 1993, Coleman Barks, Maypop. Excerpt from The Caregivers, by Beth Witrogen McLeod. 1995, The San Francisco Examiner. Excerpts from Complaints of a Dutiful Daughter. 1994, Deborah Hoffmann.
No part of this publication may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, recording, scanning, or otherwise, except as permitted under Section 107 or 108 of the 1976 United States Copyright Act, without either the prior written permission of the Publisher or authorization through payment of the appropriate per-copy fee to the Copyright Clearance Center, 222 Rosewood Drive, Danvers, MA 01923, [phone], fax [phone]. Requests to the Publisher for permission should be addressed to the Permissions Department, John Wiley Sons, Inc., 605 Third Avenue, New York, NY 10158-0012, [phone], fax [phone], E-Mail: [e-mail].
This publication is designed to provide accurate and authoritative information in regard to the subject matter covered. It is sold with the understanding that the publisher is not engaged in rendering professional services. If professional advice or other expert assistance is required, the services of a competent professional person should be sought.
Library of Congress Cataloging-in-Publication Data:
McLeod, Beth Witrogen
Caregiving : the spiritual journey of love, loss, and renewal / Beth Witrogen McLeod.
p. cm.
Includes bibliographical references and index.
ISBN 978-0-471-39217-0 (perfect bound)
ISBN 978-0-471-25408-9 (hardcover :alk. paper)
1. Terminal care. 2. Caregivers. 3. Bereavement-Psychological aspects. I. Title.
R726.8.M39 1994 362.175-dc21
98-41472
CIP
10 9 8 7 6 5 4 3
For my parents, Mel and Elaine Witrogen, and for my husband, Bob McLeod, the three who gave me life
Contents

Acknowledgments
Introduction
My Parents Are Dying
Part I Setting Out on the Path of Caregiving
1 What Family Caregiving Is
I Am a Caregiver
2 Women and Caregiving
The Spirit of Christmas Present
3 The Medical/Financial Maze
A Sacred Sorrow
4 Caring for Aging Parents
Into the Abyss
5 Spousal Caregiving
Do Not Resuscitate
Part II Emotional Wilderness
6 The Nature of Loss
7 The Stresses of Caregiving
Blessings
8 Caregivers and Depression
9 Hitting Bottom
To the Stars through Difficulty
Part III Bridges to the Future
10 Support Strategies and Everyday Miracles
11 Caregivers, Religion, and Spirituality
12 End-of-Life Concerns
13 Caregiving as a Rite of Passage
Fancy Nightmares
Part IV Reclaiming Life
14 Awakening the Heart
Thank You for Everything
15 The Urge to Serve
Our Love Will Never End
16 Caregiving and Community
Appendix Resources, Further Reading, Web Sites
Reference Notes
Index
Acknowledgments

Like caregiving, writing a book feels solitary, but no one truly accomplishes it alone. Every person who has shared a painful or happy story, everyone who encouraged me both during my parents illnesses and my long journey back, helped create this book.
But some people must be recognized by name: foremost is my husband, Bob, without whose lovingkindness, wisdom, humor, patience, and generosity of spirit I would have stayed forever submerged; the indomitable Samantha Ko; my agents, Laurie Fox and Linda Chester, whose faith and support honor the soul in us all; my editor at John Wiley Sons, Thomas Miller, whose insightful and caring work greatly enhanced the evolution and substance of this work; my sister, Marcia, for her willingness; Anne Bashkiroff, Claudine Michael, Tom Scott, Bob Knight, Ray Denton, Hospice Inc., Tammy and Ken Breeden, Faye Johnson, Cleo Houston, Erma Garnes, Marcia and Buzz Solomon, Beverly Jacobson, Leslie Innes, P. S. Thorne; the Wichita Eagle; and Steve Cook and other friends at the San Francisco Examiner who supported my series, The Caregivers, and understood the need to follow my heart.
Especially I extend humble, deep appreciation to the hundred-plus caregivers who so openly shared such intimate pain; and to the approximately one hundred professionals who graciously lent expertise. I am indebted to the hundreds of other caregivers who have participated in my weekly AOL caregiver support chat; their stories form the heart of Caregiving. I am also indebted to the Alzheimer s e-mail group for their trust and inspiration.
To respect the wishes of caregivers who requested anonymity, their names have been changed-but not their tales, all of which validate this life passage as a spiritual journey. I regret the inability to print everyone s story, because each is valuable. No comment, no outpouring, no experience has been without meaning: all bear witness to family caregivers everywhere, and to the heroic nature of caring itself.

Note from the author
If you have a caregiving story to share, or comments about Caregiving, write Beth Witrogen McLeod, c/o John Wiley Sons, Inc., 605 Third Avenue, New York, NY 10158, or [e-mail] for email correspondence.
Introduction

The other night I had this dream:

I am rushing to catch a train but have forgotten some valuables at the hotel. When I return, I find the room unlocked and all my belongings stolen. Weeping uncontrollably, I run to rescue the one prize I had carefully hidden: my late parents jewelry box, filled with the exquisite pieces that are my sole inheritance. But it is not there.
As others try to comfort me, I tell them that everything of importance is gone. No one understands the depth of my loss; there can be no consolation. Yet as I wander weakly around the room, I discover that the thieves dropped the container, now empty. On impulse I turn it upside down and notice a secret compartment I never knew existed. Inside are boxes my father has carefully wrapped, like tiny presents, each containing large uncut stones of impossible value.
My parents have provided for me in my moment of deepest anguish: knowledge that we all contain the potential to shine richly and to reflect outwardly the spirit that yearns within. It is up to each of us to take that journey to wholeness-then manifest it in service to others.
I never saw it coming. I was drifting blithely along in my tidy little life, as naive and immortal as the next fortysomething. Suddenly both my parents were catastrophically ill, and my life was abruptly derailed. Everything that had been familiar vanished; what might come was terrifyingly uncertain.
The initial severing came the instant my father informed me, over aching distance at the end of my work day at the San Francisco Examiner, that my mother had amyotrophic lateral sclerosis, not arthritis. He could not speak the D word; he didn t have to. His own life was already on the line after a fifth and final surgery to remove another grapefruit-sized tumor from the hollow that had once housed his tailbone.
My father s words, delivered lightly in his desire to protect me, shattered my childhood, stole my future, and undermined the security that had cloistered me until that moment: my identity as a daughter, my parents little girl, someone who would be shielded from life s vicissitudes by the two people who would always care. In their illnesses they suffered greatly, a relentless ricocheting from crisis to crisis in pain and misfortune. And when they were long past all possibility of remaining in their home, my parents were packed up and shuttled to a convalescent facility where they later died, five weeks apart, nearly bankrupt from medical bills and invisible after decades of public service.
In some ways they never knew what hit them; in some ways neither did I, not until long after they passed and I had time, and energy, to reflect on all that had transpired. Despite the best of intentions and arguments to the contrary, I never felt I did enough for them.
Their fate changed my life forever. Grief is still my adviser; sometimes it is a friend and reminds me of my humble place in the universe, opening life to the mysterious gifts of awe and gratitude. At other times it casts me down and turns my heart to stone. In the best of times I know loss to be merely a matter of perspective; in the worst I lose my soul to anger at life s brief luminescence.
Who Are the Caregivers?
My parents left a double-edged legacy: awareness of both the sorrow and the generosity of the human heart. Nowhere perhaps is this paradox more widely played out than on the daily stage of family caregiving, where the unsuspecting can find themselves on a chaotic journey in which the only certainty is the demise of their loved one. These caregivers are on a path seemingly without end, subjected to the stresses and the guilts of watching another s pain without being able to erase it, of witnessing a loved one s dying without being able to prevent it. They quietly sacrifice personal agendas to look after those in need, often sandwiched between child care and jobs and usually without advance planning. They live a world apart from everyday reality and wonder if they will ever be normal again. They have one goal: to maintain the dignity and the well-being of their loved one until the end. The burden is great, the information insufficient, the doubt overpowering. Yet these loyal souls-many of whom do not recognize themselves as caregivers-work largely without professional help, feeling they can and must do everything alone. There is no question about taking on this role: they do so compell