Rosalynn Carter - Helping Yourself Help Others: A Book for Caregivers

HELPING

YOURSELF

HELP

OTHERS

ALSO BY ROSALYNN CARTER

Within Our Reach: Ending the Mental Health Crisis

(with Susan K. Golant and Kathryn E. Cade)

Helping Someone with Mental Illness:

A Compassionate Guide for Family, Friends, and Caregivers

(with Susan K. Golant)

Everything to Gain:

Making the Most of the Rest of Your Life

(with Jimmy Carter)

First Lady from Plains

HELPING
YOURSELF
HELP
OTHERS

A Book for Caregivers

ROSALYNN
CARTER

with Susan K. Golant

with new material by Leisa Easom, PhD, RN

PUBLICAFFAIRS

New York

Copyright 1994; revised edition in 2013 by Rosalynn Carter.

Originally published by Times Books, a division of Random House, in 1994.

Published in 2013 in the United States by PublicAffairs, a Member of the Perseus Books Group

All rights reserved.

No part of this book may be reproduced in any manner whatsoever without written permission except in the case of brief quotations embodied in critical articles and reviews. For information, address PublicAffairs, 250 West 57th Street, 15th Floor, New York, NY 10107.

PublicAffairs books are available at special discounts for bulk purchases in the U.S. by corporations, institutions, and other organizations. For more information, please contact the Special Markets Department at the Perseus Books Group, 2300 Chestnut Street, Suite 200, Philadelphia, PA 19103, call (800) 8104145, ext. 5000, or e-mail .

In order to protect their privacy, the names and identities of many caregivers and their loved ones have been disguised; these people are identified by first name only. All others are identified by their real names, which are mentioned in full.

Grateful acknowledgment is made to the following for permission to reprint previously published material:

New Directions Publishing Corporation and David Higham Associates Limited: Two lines from Do Not Go Gentle into That Good Night and two lines from And Death Shall Have No Dominion from Poems of Dylan Thomas by Dylan Thomas. Rights throughout Canada and the British Commonwealth are controlled by David Higham Associates Limited, London. Copyright 1945 by the Trustees for the Copyrights of Dylan Thomas. Copyright 1952 by Dylan Thomas. Reprinted by permission of New Directions Publishing Corporation and David Higham Associates Limited.

The New York Times: Excerpt from Keeping the Elderly at Home and Care Affordable by Tamar Lewin (February 14, 1994). Copyright 1994 by The New York Times Company. Reprinted by permission of The New York Times.

Library of Congress Cataloging-in-Publication Data

Carter, Rosalynn.

Helping yourself help others : a book for caregivers / Rosalynn Carter with Susan K. Golant.Revised edition.

pages cm

Summary: The former First Ladys warmly personal account of caregiving is also a reassuring guidebook offering practical solutionsProvided by publisher.

Includes bibliographical references and index.

ISBN 978-1-61039-353-9 (electronic)

1. Home care services. 2. Chronically illHome care. 3. Chronically illFamily relationships. I. Golant, Susan K. II. Title.

RA645.3.C37 2013

362.14dc23

2013010512

First Edition

10 9 8 7 6 5 4 3 2 1

To My Mother

CONTENTS

I wrote the first edition of Helping Yourself Help Others in 1994 to share results of the Rosalynn Carter Institute for Caregivings (RCI) CARE-NET survey, which was conducted to assess the needs of informal and formal caregivers. At that time very little was known about the needs of caregivers. We continued to build upon those findings as we studied and worked closely with caregivers over the next two decades.

To produce this revised edition of the book we have reached out to reconnect with many individuals and organizations in the caregiving field. I hope the updated information and documented progress will serve to encourage, support, and inform those embarking on a caregiving journey.

ROSALYNN CARTER

Caring for someone requires commitment, determination, dedication, and timeso does writing a book. The second edition of Helping Yourself Help Others was written with the contributions of many.

My special thanks go to the Rosalynn Carter Institute staff, the RCI Pope Fellows, and students of Georgia Southwestern State University who assisted with locating and updating resources for caregivers.

I am grateful to my longtime assistant, Melissa Montgomery, and Faye Perdue at The Carter Center, who helped with proofreading and reviewing materials.

I have reached out to many individuals and organizations for current information on issues of caregiving and progress to date. To all of these I express my appreciation.

Peter Osnos, who was my editor when the original book was published, recognized its enduring value. I am indebted to him, as founder of PublicAffairs, for his interest in having it republished and for assigning Clive Priddle, the publisher, and Melissa Raymond, the managing editor, to work on it. And Jimmy, my husband, with his patience and advice, helps me in all my endeavors.

My deepest gratitude goes to Leisa Easom, the current executive director of the Rosalynn Carter Institute for Caregiving, who infused new material and provided needed revisions. Without her help with research and writing, this edition of the book would not have been possible. She worked diligently to interview individuals and gather the needed information while still overseeing all of her other responsibilities at the Institute. I am thankful for her work.

ROSALYNN CARTER

ONE OF MY COLLEAGUES IN THE FIELD OF CAREGIVING ONCE said, There are only four kinds of people in this world:

those who have been caregivers,

those who currently are caregivers,

those who will be caregivers, and

those who will need caregivers.

Family (also called informal or lay) caregivers are individuals who provide care for chronically ill or disabled relatives or friends. Their contributions can range from less than an hour or two per day to round-the-clock care. They provide services such as grocery shopping; cooking; financial management; errands; housework; transportation; administration of medications, including giving shots, changing dressings, and giving nourishment through feeding tubes; personal care, such as bathing, shaving, and toileting; and counseling, emotional support, and often just sitting and watching over. They may care for a loved one who is relatively independent but needs a daily compassionate phone call, a loved one who is housebound, or one who is totally bedridden.

My family has had its share of informal caregiving experiences, and more likely than not, so has yours. Indeed, if you have picked up this book, you probably are a caring person. You may prove that every day by actively assisting someone who is elderly or developmentally disabled or who suffers from a physical or mental illness. What a rewarding and noble endeavor it is to help another human being!