Aging Together This page intentionally left blank Aging Together Dementia, Friendship, and Flourishing Communities Susan H. McFadden and John T. McFadden Johns Hopkins University Press Baltimore © 2011 Johns Hopkins University Press All rights reserved. Published 2011 Printed in the United States of America on acid-f ree paper Johns Hopkins Paperback edition, 2014 2 4 6 8 9 7 5 3 1 All scriptural quotations are taken from the New Revised Standard Version Bible. Johns Hopkins University Press 2715 North Charles Street Baltimore, Mary land 21218- 4363 www .press .jhu .edu The Library of Congress has cataloged the hardcover edition of this book as follows: McFadden, Susan H., author. Aging together : dementia, friendship, and fl ourishing communities / Susan H. McFadden and John T. McFadden. p. ; cm. Includes bibliographical references and index. I SBN-1 3: 978-0 -8 018-9 986-7 (hardcover : alk. paper) I SBN-1 0: 0-8 018-9 986-9 (hardcover : alk. paper) 1. Dementia— Patients—Family relationships. 2. Dementia— Social aspects. I. McFadden, John T., author. II. Title. [DNLM: 1. Alzheimer Disease— therapy. 2. Aged— psychology. 3. Alzheimer Disease— psychology. 4. Community Networks. 5. Social Support. 6. Spirituality. WT 155] R C521.M44 2011 362.196'83—dc22 2010045133 A cata log record for this book is available from the British Library. ISBN-13: 978-1-4214-1375-4 ISBN-10: 1-4214-1375-2 Special discounts are available for bulk purchases of this book. For more information, please contact Special Sales at 410- 516- 6936 or [email protected]. Johns Hopkins University Press uses environmentally friendly book materials, including recycled text paper that is composed of at least 30 percent post- consumer waste, whenever possible. contents Preface vii Ac know ledg ments xiii Introduction 1 1. Dilemmas of Dementia Diagnoses 16 2. Receiving the Diagnosis 32 3. Personhood 44 4. What Is Friendship? 62 5. When Our Friends Travel the Dementia Road 77 6. Dementia Fear and Anxiety 93 7. Beyond Fear and Anxiety 109 8. The Flourishing Community 122 9. Congregations as Schools for Friendship 132 10. The Things That Abide 149 11. Practicing Friendship in the “Thin Places” 163 12. Memory, Forgetting, and the Present Time 183 Discussion Questions 197 Notes 201 References 213 Index 227 This page intentionally left blank preface We w ere married in January 1970, halfway through our sen ior year in college. It was the era of the Vietnam War, utopian back- to- the-l and dreams, and “sex, drugs, and rock- and-r oll.” Ours was a cohort not much given to career planning or long- term goals. The shadow cast by the war and our collective certainty that the Age of Aquarius was dawning made us prone to heed Baba Ram Dass’s ad- monition to “Be here now.” As is often true for college cohorts, our anchor in the sea of chaos swirling about us was our community of friends, in our case a motley crew of hippies, po liti cal activists, musicians, intellectuals, and goat farmers who collectively constituted our “tribe.” And like many other generations of college students, we held the conceit that we w ere unique and that the special bonds we shared would bind us to one another for all of our lives. We joked that one day we would all reside together in the “rock-a nd-r oll nursing home,” where we would sit in rock- ing chairs on the front porch and argue about which album to play next. “No more Beatles! Put on some Hendrix!” Such lines w ere delivered in our best ap- proximations of an aged voice, with one hand cupped behind an ear and the other bracing “the bum knee where the rheumitiz is actin’ up again.” It was a lighthearted fantasy designed to sustain courage and hope. Somehow we would make it through those frightening times, drawing strength from one another, before ultimately reuniting as a community to share our collective vi- sion of the good life. But our fantasies of the rock- and-r oll nursing home never took into account the possibility of dementia. Our imaginations could extend only to diminished hearing, wrinkled skin, and creaky joints. Aging would take some toll on our bodies, but we never entertained the possibility that we might not remain the same “selves” we were at age twenty. Those friends from 1970 are now widely scattered. Some are retired from successful careers, while a few never strayed far from the goat farm. Several have viii Preface died. We are in regular contact with only a handful as we now move further into our sixties. Who among this once-i nseparable community will be the fi rst to be diagnosed with dementia? By grace or good fortune, we found our own way into adulthood. John at- tended theological school and was ordained a minister in the United Church of Christ, serving large congregations in New Jersey and Wisconsin for a total of thirty-f our years. Susan earned an M.A. in experimental psychology and a Ph.D. in psychology and religion before entering academic life with a par tic u lar focus on adult development and aging. Our two children are now well into adulthood themselves, and one recently gave birth to our fi rst grandchild. With much of our life together centered in congregations, we have been privi- leged to spend far more time in the company of older adults than most members of our cohort. When we w ere impoverished students, older adults of the congre- gation reached out to us in friendship, inviting us for meals and gifting us with used clothing. When we moved into our fi rst parsonage, it was the “old ladies” of the congregation who fi lled it with furniture. As unpolished young “fl ower children,” we were grateful to be invited to elegant parties hosted by persons in their seventies, who schooled us in the social graces. We have been richly blessed in countless ways by participating in intergenerational communities all of our adult lives. As we enter the “third age” of our shared life (the period of life bounded at one end by retirement from primary occupation and at the other by decline in physical or cognitive health), we fi nd ourselves delighting in new friendships with persons younger than we are. Too often friendships between diff erent age cohorts are reduced to clichés of one-w ay relationships, either positively (elder as dispenser of wisdom and guidance) or negatively (elder as care receiver). Wis- dom and care are both given and received in all relationships, and friendships across the lines of generation off er special riches. Further, these friendships are best nurtured and supported in the embrace of fl ourishing communities of persons who honestly acknowledge their vulnerabilities and love one another nevertheless. Our aim in this book is to present a radical view of friendship that is not based on obvious reciprocity or shared memories. We usually assume that one of the most important components of a friendship is that another person has known us through time. Friends help us to know who we are; they represent a part of our selfhood. However, when considering relationships with persons who have dementia, we are forced to ask how it is possible to be a friend with someone who does not remember us from moment to moment, even though Preface ix together we may have spun a web of friendship over many years. Can we still be friends? And, can we make new friends with persons at various points in the dementia proc ess, persons who may not be able to put together a story about how we met, what we have done together, and why we are important to each other? Can any meaning be gained from cultivating such friendships? These questions will become more pressing in the coming years as the greatest number of persons in human history enters old age. Unfortunately, we live in a time when we separate persons from one another in later life—p sychologically, socially, and physically— by using criteria based on brain health. It is not hard to tally up the positive ways friends who age successfully enrich our lives. But, is it possible that friendship with persons who have dementia—e ither those we have known a long time or persons newly met— might add meaning to the experience of aging? The answer is yes, and this book aims to show how this kind of friend- ship is possible. We begin with an introductory chapter that off ers more detail about what we call our “standing grounds” in academic psychology and pastoral theology. These provide the perspectives we employ in examining the challenges the future will present to people who call one another “friend.” After off ering a cursory review of various types of dementia diagnoses in Chapter 1 (a kind of “Dementia 101,” which we realize will quickly become outdated, given the rapid accumulation of research and clinical observations), in Chapter 2 we consider what it feels like to receive the diagnosis. Throughout the chapters we illustrate our points with stories about people we have known. Of course, we use no actual names, but we hope these small vignettes give a taste of what some call the “lived experience” of dementia. We begin to answer yes to our question about the possibility of retaining friendship in the face of memory loss when we examine the reasons we value human beings, in Chapter 3. If others are valuable to us only because they pos- sess a part of our individual gen et ic code or because they can reciprocate our altruism, then there is little reason for friendship with persons who have demen- tia. This friendship is possible, however, if it is infused with the belief that per- sons should be valued regardless of their intellectual status and that personhood itself is grounded in relationship. Chapter 4 takes us into a detailed discussion of friendship from two very dif- ferent points of view: contemporary social scientifi c research and Aristotle’s re- fl ections on friendship in the Nicomachean Ethics. We continue with those two perspectives in Chapter 5 as we look more deeply into the challenges raised when a friend experiences memory loss and confusion.