Jody Gastfriend - My Parents Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving

Praise for My Parents Keeper

Jody Gastfriend has created the ultimate GPS for family caregivers. At once humane and helpful, personal and political, she charts the long, hard, and rewarding role that all of us will take caring for our families and each other. Dont leave home without it!Ellen Goodman, Pulitzer Prizewinning columnist and founder of The Conversation Project

Jody Gastfriend unflinchingly tackles a complex aspect of eldercare in each chapter of My Parents Keeper. She has masterfully blended essential facts with exceptional psychological insight to create an indispensable resource for family caregivers.Patrick OMalley, author of Getting Grief Right: Finding Your Story of Love in the Sorrow of Loss

Jody Gastfriends clearly written My Parents Keeper raises in the reader important questions about the human rights dilemma: On the one hand supported decision making in which care partnerschildren, spouses, geriatric care managershelp people living with dementia express their own needs and decisions related to lifestyle and risk; on the other, substitute decision making where care givers take over decisions in the name of safety, asserting that they know whats best for those they love and care for.John Zeisel, author of Im Still Here: A New Philosophy of Alzheimers Care

My Parents Keeper shines a light on the conundrum of caregivingas adult children, our best intentions are insufficient to help our parents and ourselves. We need a plan in advance of needthis book offers up-to-date guideposts for this inevitable caregiving journey.Laurie M. Orlov, author of When Your Parents Need Elder Care: Lessons from the Front Lines

Caregiving is a noble cause. The responsibilities are enormous. This book helps guide us through the pitfalls when one takes on this duty, which is both a curse and a blessing for the child caring for a parent.Harry Haroutunian, author of Being Sober and Not As Prescribed

Jody Gastfriends My Parents Keeper offers definitive testament to how the slow, destructive force of Alzheimers disease disrupts generations and challenges families caring for loved ones with dementia. It is a must-read and a wake-up call to the public/private sectors who serve our aging population.Meryl Comer, President of the Geoffrey Beene Alzheimers Initiative and author of Slow Dancing with a Stranger: Lost and Found in the Age of Alzheimers

Jody Gastfriends use of humor and pathos without bitterness or self-pity makes this book an easy read. The tone is conversationalnever condescending, never combativeeven when describing the maze that health care has become and the limitations of existing policies.Gary Kennedy, Albert Einstein College of Medicine

Jody Gastfriend successfully weaves illustrative vignettes with practical advice to help adult children navigate the challenges of caring for aging/ill parents, focusing on potentially rewarding aspects of this often-difficult task.Richard Marottoli, Dorothy Adler Geriatric Assessment Center, Yale New Haven Hospital, Yale University

My Parents Keeper

Y ALE U NIVERSITY P RESS H EALTH & W ELLNESS

A Yale University Press Health & Wellness book is an authoritative, accessible source of information on a health-related topic. It may provide guidance to help you lead a healthy life, examine your treatment options for a specific condition or disease, situate a healthcare issue in the context of your life as a whole, or address questions or concerns that linger after visits to your healthcare provider.

For a complete list of titles in this series, please consult yalebooks.com.

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Richard C. Frank, M.D., Fighting Cancer with Knowledge and Hope: A Guide for Patients, Families, and Health Care Providers, 2nd ed.

Jody Gastfriend, My Parents Keeper: The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving

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The Guilt, Grief, Guesswork, and Unexpected Gifts of Caregiving

Jody Gastfriend

Foreword by Patrick J. Kennedy

This book is an authoritative, accessible source of information on a health-related topic. It may provide suggestions to help you or your family members lead a healthy life, examine care options for a specific condition or disease, or address questions or concerns about caregiving challenges. However, neither the publisher nor the author of this book is rendering professional advice or services to any individual reader, and the ideas and recommendations contained in this book are not intended as a substitute for consulting with a healthcare provider, elder law attorney or other relevant expert.

Published on the foundation established in memory of William Chauncey Williams of the Class of 1822, Yale Medical School, and of William Cook Williams of the Class of 1850, Yale Medical School.

Copyright 2018 by Jody Gastfriend.

All rights reserved.

This book may not be reproduced, in whole or in part, including illustrations, in any form (beyond that copying permitted by Sections 107 and 108 of the U.S. Copyright Law and except by reviewers for the public press), without written permission from the publishers.

Yale University Press books may be purchased in quantity for educational, business, or promotional use. For information, please e-mail (U.K. office).

Set in Janson Roman type by Integrated Publishing Solutions, Grand Rapids, Michigan.

Printed in the United States of America.

Library of Congress Control Number: 2017957269

ISBN 978-0-300-22135-0 (paperback : alk. paper)

A catalogue record for this book is available from the British Library.

This paper meets the requirements of ANSI/NISO Z39.48-1992

(Permanence of Paper).

10 9 8 7 6 5 4 3 2 1

To Mom and Dad:
With gratitude for your wisdom, guidance, and love

by Patrick J. Kennedy

ONE
The Journey Begins

TWO
The Imperfect Caregiver

THREE
The Parent Who Rejects Help

FOUR
Good, Bad, and Nonexistent Siblings

FIVE
What Does Care Cost, and Who Pays?

SIX
The Care Maze

SEVEN
Making Work Work

EIGHT
The Art of Connection: Caring for a Loved One with Dementia

NINE
Caring for the Parent Who Couldnt Care for You

TEN
How to Care for Ourselves Too

ELEVEN
Letting Go

TWELVE
Moving Forward, Looking Back