Helping Yourself Help Others: A Book for Caregivers

By Rosalynn Carter and Susan K. Golant

“A practical, highly informative, and sympathetic guide.”
—The Washington Post

Most of us will become a caregiver at some point in our lives. And we will assume this role for the most personal reason imaginable: wanting to help someone we love. But we may not know where to start, and we may be afraid of losing ourselves in this daunting task.

Former first lady Rosalynn Carter, a longtime advocate for caregivers and mental health, knows firsthand the challenges of this labor of love. Drawing upon her own experiences and those of hundreds of others whose stories she gathered over many decades, Mrs. Carter offers reassuring, practical advice to any caregiver who has faced stress, anxiety, or loneliness.

Helping Yourself Help Others, reissued here with a new foreword, is as relevant as ever. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront. Filled with empathy, this encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role.

• Language: English
• Publisher: University of Arkansas Press
• Release date: Jul 17, 2023
• ISBN: 9781610757997

Book preview

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

NEW FOREWORD BY JENNIFER OLSEN AND PAURVI BHATT

The University of Arkansas Press

Fayetteville

2023

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. Published in 2023 by The University of Arkansas Press.

All rights reserved. No part of this book should be used or reproduced in any manner without prior permission in writing from the University of Arkansas Press or as expressly permitted by law.

ISBN: 978-1-68226-234-4

eISBN: 978-1-61075-799-7

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Manufactured in the United States of America

The paper used in this publication meets the minimum requirements of the American National Standard for Permanence of Paper for Printed Library Materials Z39.48-1984.

Library of Congress Cataloging-in-Publication Data

Names: Carter, Rosalynn, author. | Golant, Susan K., author. | Olsen, Jennifer (Epidemiologist), author of foreword. | Bhatt, Paurvi, author of foreword.

Title: Helping yourself help others : a book for caregivers / Rosalynn Carter with Susan K. Golant ; new foreword by Jennifer Olsen and Paurvi Bhatt.

Description: New edition. | Fayetteville : The University of Arkansas Press, 2023. | 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. Published in 2023 by The University of Arkansas Press—title page verso. | Includes bibliographical references and index. | Summary: In Helping Yourself Help Others, former first lady Rosalynn Carter draws upon her own experiences and those of hundreds of others to offer reassuring, practical advice to caregivers. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront—Provided by publisher.

Identifiers: LCCN 2022061275 (print) | LCCN 2022061276 (ebook) | ISBN 9781682262344 (paperback) | ISBN 9781610757997 (ebook)

Subjects: LCSH: Home care services. | Chronically ill—Home care. | Chronically ill—Family relationships.

Classification: LCC RA645.3 .C37 2023 (print) | LCC RA645.3 (ebook) | DDC 362.14—dc23/eng/20230202

LC record available at https://lccn.loc.gov/2022061275

LC ebook record available at https://lccn.loc.gov/2022061276

TO MY MOTHER

CONTENTS

Foreword by Jennifer Olsen and Paurvi Bhatt

Preface by Rosalynn Carter

Acknowledgments

1. What Is Caregiving?

2. Caregiving in Plains and Beyond

3. Caregiving Then and Now

4. Educate and Prepare Yourself

5. Your Emotional Dilemmas as a Family Caregiver

6. Caregiving and Family Harmony

7. Dealing with Your Isolation

8. Avoiding Burnout

9. Dealing with Doctors and Other Formal Caregivers

10. Institutionalization? Answering the Difficult Question

11. Finding Fulfillment

Appendix A: Looking toward the Future

Appendix B: Helpful Organizations and Resources

Appendix C: Books You May Find Helpful

References

Index

FOREWORD

Helping Yourself Help Others

THE FIRST EDITION of former first lady Rosalynn Carter’s landmark book Helping Yourself Help Others was published in 1994, nearly thirty years ago. At that time, no one was talking much about caregivers. Historically, the important work of caregivers largely went unseen, even though there have always been millions of individuals helping family and friends in need, whether those needs are brought on by aging, cognitive disability, or physical or mental illness. As Mrs. Carter has described, previous generations of caregivers—among them, her own mother—did not necessarily see themselves as caregivers. They simply did whatever was needed to take care of their family, whether that meant caring for them at the bedside, taking them to doctor’s appointments, supporting them financially, or doing their shopping and keeping the house in order. Oftentimes, the care provided—regarded then primarily as something that family did for family—took place behind closed doors.

Mrs. Carter is beloved for her commitment to improving the lives of women and children, and she is widely heralded for her early attention to mental illness, at a time when that issue also was stigmatized and concealed. While her commitment to mental health is well-known, Mrs. Carter also has dedicated her voice to raising awareness about caregivers since her time in the White House. She has courageously told her own caregiver stories, helping to reduce the stigma that often accompanies caregiving. Discovering the power of her personal experience led her to do more for caregivers directly; leveraging her prominence, she established the Rosalynn Carter Institute for Caregivers (RCI), dedicated to promoting the health, strength, and resilience of caregivers throughout the United States.

Who Should Read This Book Today?

When it was originally published, this book was conceived as a how-to guide to help new caregivers navigate their newfound challenges. As Mrs. Carter lays out in the first chapter, the purpose of this book is to encourage you, empathize with you, and advocate for your special needs. And, as the book’s first cover promised from the outset, filled with empathy, this sensitive, encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role. These needs ring even truer now than they did then, in part because the world has changed substantially since the book was first published in 1994.

As Mrs. Carter famously said, There are only four kinds of people in the world: those who have been caregivers, those who are caregivers, those who will be caregivers, and those who will need caregivers. You may not consider yourself a caregiver, and that’s okay! This book initially was written for a reader, most likely a woman, playing a traditional caregiver role: supporting a friend or family member struggling with either a physical injury or a cognitive disability. At that time—although it was only thirty years ago—society had a more simplistic understanding of caregiving. The technological, scientific, and cultural advances that have taken place since then mean caregivers are living in a substantially changed world and face vastly different circumstances. With hind-sight, we can see this book reflects a certain set of experiences, while now we have a greater sense of the multitude of caregiving experiences, each one unique.

If you are a caregiver reading this book today, your caregiver journey may be more complex than many of the stories that Mrs. Carter recounts here, but you will nonetheless find takeaways relevant to your own experience. If you are not currently a caregiver, this book can help you support the caregivers you know and also prepare you for the time when you will become a caregiver, because rarely do we have the chance to prepare. We’ve learned that far too often, one is called to be a caregiver unexpectedly. Throughout the book, you will find prompting questions that may help you think about what you might do as a caregiver and how you can help the caregivers in your life. This book will help you recognize what a caregiver might experience—whether that caregiver is a loved one or yourself, today or sometime in the future. Ultimately, this book will help you grow empathy at a time when caring for others is especially crucial in our world.

Why Us?

It is our great privilege to introduce the latest edition of Helping Yourself Help Others. As experienced leaders in public health and health systems who also have personal caregiving experience, we see the reissuing of this book as a timely and much-needed opportunity to create discussion about the systemic change required to scale care, grow empathy, and explore the needs of caregivers and those they are caring for, in the 2020s and beyond. Jennifer Olsen is chief executive officer of the nonprofit RCI, and Paurvi Bhatt is a healthcare and philanthropy executive who serves on RCI’s Board of Directors. We both spend our days reimagining the future of caregiving and championing caregivers, but perhaps more importantly, like the former first lady, our experience with caregiving began not professionally, but with people we love.

Jennifer’s caregiver story led her to RCI, an unlikely landing place after two decades fighting infectious diseases. Jennifer’s early interest in disease outbreaks would eventually turn into a career in epidemiology. Her childhood was filled with infectious-disease-themed board games and books like The Stand and The Strain, but when Jennifer’s grandmother was diagnosed with Alzheimer’s, academic conversations about how to keep disease at bay and understand risk became personal. As her grandmother’s initial symptoms progressed, Jennifer saw both the changes in her grandmother’s health and well-being as well as the impact on her parents, who were her grandmother’s primary caregivers. Jennifer took a break from her job, which had carried her across the globe, and saw her parents’ struggle up close. She was present when her family made the difficult decision to transition her grandmother to a care facility and saw how that choice impacted the entire family. She discovered the hidden population of caregivers who are suffering without resources, support, or a systems-level approach.

Paurvi also is an expert in public health, with a focus on health systems and health economics. An Asian American health leader, she became an experienced caregiver as she balanced her expanding career with providing care to her first-generation immigrant parents. When Paurvi was just twenty-eight years old, her fifty-eight-year-old father developed early-onset Alzheimer’s and dementia. At an age when many young professionals are navigating difficult conversations about flexibility in the workplace to accommodate their educational or family goals, she was talking with hiring managers about the flexibility she needed for elder-caregiving responsibilities. Alongside her father’s health journey, Paurvi’s mother was challenged by the resurgence of cancer—which had first been diagnosed in the 1970s, reemerged in the 2000s, and continued to spread until her death in 2022. During the COVID-19 pandemic, Paurvi took extended leave to care for her mother, who was at great risk if infected because, in addition to her cancer, she was on oxygen for end-stage pulmonary fibrosis. Paurvi’s experience heightened her awareness of the difficulties that immigrants and other underserved populations face when trying to navigate the complex US healthcare and eldercare systems while simultaneously struggling to understand unfamiliar cultural norms. Life and work came together to shape Paurvi’s career and the kind of leader she would become.

Why Now?

Our experiences of caregiving are quite different from one another’s, yet neither is an uncommon story in the United States today, when modern medicine has increased life expectancy; women are more likely to work outside the home and in higher-level roles; the US populace is more diverse than ever; and the healthcare system can be indecipherable, especially to immigrants and underserved populations. In these and many other ways, society has changed markedly in the nearly thirty years since the initial publication of this book. It can be hard to recall what life was like in 1994, so just to give you a sense . . . Right around the time this book was first released, vice president Al Gore headlined the first conference to discuss the information superhighway, president Bill Clinton introduced the idea of healthcare reform in his first State of the Union address, and Jeff Bezos founded a new internet business he called Amazon.

Our own day-to-day lives have changed dramatically, as has the pressure to care for loved ones as the silver economy grows. In healthcare thirty years ago, initiating or upgrading insurance coverage was unlikely if you had a preexisting condition. Long-term care cost a fraction of what it costs today. Trying to determine what your symptoms might mean required calling the doctor or physically going to the library, with no option for a quick telehealth visit. If being a caregiver feels burdensome today, imagine what it was like before the internet and video calls.

The good news is these advancements have dramatically improved convenience for many caregivers, who can access numerous resources to help them acclimate to their new roles and environments. On the other hand, such advancements have also introduced new complexities. For example, the abundance of online services and information to help with specific needs and questions can overwhelm family and caregivers, leave them with decision fatigue, and contribute to a sense of isolation. Caregivers today express the desire for a stronger community of family, friends, and colleagues who can understand and empathize with what they are going through and who know what meaningful actions they might take to help them through such challenges.

This book originally was intended to speak directly to caregivers, and we trust that this new edition will carry the message further, to bring about new awareness, empathy, and commitment to act. We hope this reaches a broader audience who, through their reading, become more aware of their friends, family members, colleagues, and neighbors who are providing care and need support. Our goal is to foster a more understanding community that is more empathetic at an individual level and, as a collective, feels moved to advocate for a more supportive culture for caregivers.

Who Needs Care and Who Provides It?

When the National Alliance for Caregiving and AARP issued findings from their caregiving survey in Family Caregiving in the U.S. in 1997, they estimated there were 22.4 million caregiving households in the United States. This survey, the first in a series of caregiving studies, created a new baseline. The most recent report, Caregiving in the U.S. 2020, put the number of caregivers at 53 million.

While comparing caregiving households with caregivers is not a perfect measure, the growth is undeniable. At least some of the recorded increase is because caregivers are more visible—due, in part, to Mrs. Carter’s efforts. Certainly in America, as in many other parts of the world, the population is aging and living longer, with many confronting chronic diseases that allow them to live productive lives with assistance. Adults over eighty are now the fastest-growing cohort in the United States. For context, in 1997, when the first Family Caregiving report came out, this group was middle-aged, not yet in need of the caregiver support that many rely on today. At the same time, one-fifth of the US population is expected to be over sixty-five by 2030. Some in that cohort already require caregivers, and we know that number will continue to grow.

The demographic changes creating a need for caregivers go beyond aging baby boomers and increased longevity. The United States has grown much more diverse, both with the arrival of many new immigrants from around the world and the steady increase in the number of people of color across the population in general. In addition, the US faces an increased number of service members and veterans suffering from visible or invisible wounds who rely on the support of a caregiver. Some of these demographic shifts have compelled changes in the kind of care needed. When people live further into old age, they may go through various stages of cognitive decline, requiring a different degree of care. Those living longer with chronic disease may decline physically, and caring at home can be difficult, especially if their caregivers are older as well. Those who speak English as a second language, or not at all, can have a hard time communicating with their care team, including home health aides and nurses. Simultaneously, early hospital discharge to keep costs low and bring care home is becoming more common, and this requires more hands-on care by loved ones and formal caregivers.

The strain on family is increasing as sandwich generations balance care for children and parents, and as aging Gen Xers move toward their own retirement while caring for parents. The opportunity to share caring for loved ones across family members is dwindling as family size shrinks in the United States; and as the cost of care increases, the capacity of family members to provide care is impacted. Over the past thirty years, far more women—ourselves included—have entered the workforce, and many women are navigating providing care while growing their careers, even with substantially greater support in the caregiving role from male partners. Meanwhile, the modern workplace is slowly adjusting under the pressure of the increased demand for balance. Many employers are introducing innovative benefits and offering modest flexibilities, particularly as a result of the upheaval brought on by COVID-19.

Despite the growing demand for caregivers and the greater interest in home care at all levels—from basic care to hospital-at-home—the number of available trained, fairly paid at-home healthcare professionals is at an all-time low. At the same time, formally trained home-care workers are burned out, poorly paid, and offered limited opportunities for career growth in the healthcare profession. All this reveals that the United States has not yet established a cohesive, affordable system for the long term, leaving many families to piece together a makeshift solution for the financing and oversight of care delivered collectively by trained and untrained family and friends, gig workers, and the occasional direct care worker—often without carefully articulated goals for the desired health outcome. The burden is passed from employers to families to social systems like a hot potato, with the family caregiver left trying to juggle it all while trying to spend precious time with their loved one. The COVID-19 pandemic brought to light how untenable and fragile this patchwork system is, even as it resulted in an entirely new population of people suffering from long COVID, whose long-term needs remain to be seen. All the same, during this time we have observed little progress in meeting caregiver needs.

How Can You Help Caregivers?

Rarely has the proverb it takes a village felt more appropriate than when it comes to the caregiver. At its heart, it speaks to how we care for each other, how society needs to pull together to meet the needs of each of its members. This is the community we refer to, the one that must be strong so caregivers have access to the support they need not only to survive but also to thrive. Where we have to begin is to acknowledge that caregiving is far more than just private family business.

One of the greatest societal changes over the past several decades has been the breakdown of community, with priority placed on the individual over the collective. Well described in social science literature, the weakening of community bonds began long before this book was first published, but the pace has accelerated since then, in parallel with greater emphasis on independence and self-reliance. This fracturing has been exacerbated by language barriers among immigrant groups and a growing political strategy of driving wedges between ethnic and racial groups.

Despite these trends toward fragmentation, we see that community sometimes comes together organically over hardship or in celebration, drawn by ethnic, religious, or cultural ties or shared stations in life—as fellow coworkers, new parents, strained working daughters and sons, or retirees, for instance. The pull toward individualism is reversing slowly as we grow together for mutual support, but this reversal will not be completed easily. As we each come together in community across shared interests and experiences, it is time to nurture a renewed sense of empathy and foster connections with, and for, those in your life who are caring for others. Even caregivers who may not yet see themselves as caregivers need you nonetheless. The caregiving pressures that await us as a collective are accelerating, so our challenge is to grow empathy as fast as possible and jump in to support caregivers in the best way possible. The first step toward this is knowing how you can help by trying to