The Long Goodbye: Dementia Diaries
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About this ebook
In The Long Goodbye Margaret Miles describes her commitment to making--rather than passively suffering--her spouse's dementia experience. Family and friends who accompany patients find embedded in the experience moments of great beauty, hilariously funny incidents, new companions, and life insights. The narrative provides both a travelogue and suggestions for a richly meaningful life passage for all participants. The Long Goodbye seeks to supply a balanced picture of a disease usually represented as unmitigated loss.
Margaret R. Miles
Margaret R. Miles is Emerita Professor of Historical Theology, The Graduate Theological Union, Berkeley. Her recent books include Augustine and the Fundamentalist's Daughter (2011), A Complex Delight: The Secularization of the Breast, 1350-1750 (2008), and The Word Made Flesh: A History of Christian Thought (2005).
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The Long Goodbye - Margaret R. Miles
The Long Goodbye
Dementia Diaries
Margaret R. Miles
7398.pngTHE LONG GOODBYE
Dementia Diaries
Copyright ©
2017
Margaret R. Miles. All rights reserved. Except for brief quotations in critical publications or reviews, no part of this book may be reproduced in any manner without prior written permission from the publisher. Write: Permissions, Wipf and Stock Publishers,
199
W.
8
th Ave., Suite
3
, Eugene, OR
97401
.
Cascade Books
An Imprint of Wipf and Stock Publishers
199
W.
8
th Ave., Suite
3
Eugene, OR
97401
www.wipfandstock.com
paperback isbn: 978-1-4982-8238-3
hardcover isbn: 978-1-4982-8240-6
ebook isbn: 978-1-4982-8239-0
Cataloguing-in-Publication data:
Names: Miles, Margaret R. (Margaret Ruth), 1937–
Title: The long goodbye : dementia diaries / Margaret R. Miles.
Description: Eugene, OR : Cascade Books,
2017.
Includes bibliographical references.
Identifiers:
isbn 978-1-4982-8238-3 (
paperback
) | isbn 978-1-4982-8240-6 (
hardcover
) | isbn 978-1-4982-8239-0 (
ebook
)
Subjects: LCSH: Thomas, Owen C.,
1922
–
2015
. | Dementia—Patients—Family relationships. | Dementia—Patients—Care.
Classification:
RC523 .M55 2017 (
) | RC523 .M55 (
ebook
)
Manufactured in the U.S.A.
February 20, 2017
Table of Contents
Title Page
Acknowledgments
Prelude
Chapter 1: Introduction
Chapter 2: Interlude: Framing the Story
Chapter 3: At Home
Chapter 4: Transition to Assisted Living
Chapter 5: Long Walk Home
Chapter 6: Interlude: Connecting the Personal and the Social
Chapter 7: Most Beautiful Woman in the World
Chapter 8: Postlude
Bibliography
"I’ve seldom read a book more timely and welcome than The Long Goodbye by Margaret Miles. That is not to suggest it is easy on either the heart or the mind, or spiritually edifying in any obvious way. No. Miles, although immersed in the history of Christian thought and art, tells of one specific experience of dementia—centering on her late husband, a theologian. She writes with a kind of particularity and unflinching but loving realism that is truly rare. This is not a story told in such terms or details by biblical writers or ancient philosophers or even authors from a century ago. Relying partly on her diary, and interspersing her narrative with poetic quotations, Miles reminds us that dementia is an increasingly modern condition, as populations live longer. Keenly and caringly, she makes clear that dementia is something that changes not just the ‘patient’ but the lives of all involved. Miles rejects venerable oppositions between original sin and basic innocence, arguing that it is misleading even to ask whether a human being is naturally good or naturally bad. That cannot possibly do justice to the complex reality revealed in a mind beyond mending but not entirely beyond meeting. Along the way, one must learn which self, which other, can still be loved. And finally, Miles helps us ponder what to bring to such love and memory, and into what encompassing reality one is to commend life—any life, all of life—in the end."
—
Frank Burch Brown
, Senior Editor in Religion and the Arts, Oxford Research Encyclopedia of Religion; F. D. Kershner Professor of Religion and the Arts, Emeritus, Christian Theological Seminary
Owensitting003.jpgFor the caring caregivers in the Recollections unit at
The Berkshire, Berkeley, California,
2014–2015
Acknowledgments
I am grateful for the skill of doctors, nurses, and hospice caregivers who, informed by knowledge and experience, took time to think hard and carefully about what might help Owen. This book is dedicated to the caregivers who compassionately provided for the daily needs, accidents, and emergencies of residents of The Berkshire Recollections unit, 2014–15.
I am thankful for the fellow pilgrims
at the Berkshire, thankful for the beauty of the way and the goodness of the wayfarers.
¹ Family members of the residents became friends: Michael, Deirdre, Brian and Julianne. And I appreciate the friendship of residents: Joe, Margaret, Dorothy, Mary Alice, Caroline, Phillip, and Frank.
My gratitude to Professor Martha Stortz for her thoughtful and helpful suggestions for knitting the manuscript, to Charlie Collier, my gentle editor at Cascade Books, and to the Wipf and Stock team. Because of them I must differ with Anne Lamott’s aphorism "Publishing isn’t all it’s cracked up to be—but writing is."² With the generous skill of the W&S team, publishing, like writing, is what it’s cracked up to be.
1. Beckett, Waiting for Godot,
Act One.
2. Lamott, Bird by Bird, xxvi.
Prelude
Life is too short to devote much of it to activities that are not at the heart of what it is to be human.
—Martha Nussbaum
Owen and I met in 1978 in Cambridge, Massachusetts, shortly after I moved across the country from Berkeley, California, to accept a position at Harvard University Divinity School. I was forty-two. I had married twice, divorced twice, raised children, and completed my doctorate in History the year before. Owen was a tenured Professor of twentieth-century Theology and Philosophy at the Episcopal Divinity School. He was also an Episcopal priest; he had a summer parish, but his career was primarily in the academy. I was hired at entrance level, an Assistant Professor, subject to review and either promotion or termination after seven years. I was scared. I had not published anything, and I feared that colleagues and students would readily recognize that I did not know everything I needed to know to teach The History of Christian Thought
(100 CE to approximately 1800), the course for which I had been hired.
Owen had known my colleagues for many years; his children had grown up with their children. He thought of them as interesting people, simply folks.
His attitude brought relief to my insecurity as a new teacher. It helped me enormously in my first years at Harvard as I lectured on historical authors and events, some of which I had hastily researched the evening before class. One day Owen appeared at my door with an armload of books he thought I’d find useful for the topic of the next lecture. For the first time in my life I had met a man who was not jealous of my work! I began to love him, and he, recently divorced, began to love me. As my mother used to say, One thing led to another,
and we were married three years later.
Together we had five children between the ages of twenty-three and twenty-five; my daughter and son were on the West Coast, Owen’s twins were on the East Coast, his younger son in Europe and then Brazil.
The world is a smiling place.
—Augustine
Between 1981, when we were married, and approximately 2005 when I began to worry about his odd behavior, we had a rich marriage. We were critical friends, reading and commenting on each other’s writing, which eventuated in positively reviewed publications. We traveled—sabbaticals in Rome and Bolinas, California; two month-long fellowships at Bellagio, Italy; and several glorious vacations in Greece with colleagues. In 1985 I became the first tenured woman at the Harvard Divinity School. In 1996 after Owen’s retirement, we moved to Berkeley where I became Dean of the Graduate Theological Union. I wanted to see both sides of the academy, teaching and administration. In Owen’s retirement he produced important work in Science and Theology. My retirement in 2002 freed me to concentrate on writing.
Shortly after my retirement, however, Owen began to show signs of dementia, which is where this story begins.
Chapter 1
Introduction
Perhaps everything terrible is, in its deepest being, something helpless that wants our help.
—Rilke
Owen’s neurologist said, "Now that we can do something to prevent or cure strokes, heart attacks, and even cancer, we are all going to live out into the dementia years. The public should know more about it." If loving a dementia patient were simply my personal difficulty I would cope as best I could, but would not write a book about it. But dementia is not only a personal problem; it is also a social problem. At present writing the National Institutes of Health (NIH) reports five million cases of dementia in the United States; the World Health Organization (WHO) estimates 35.6 million people with the disease worldwide. Although we tend to equate dementia with Alzheimer’s disease, there are many varieties of dementia. Alzheimer’s patients comprise only 50 to 70 percent of dementia cases.
Dementia is not a new disease, but it was named and its characteristics mapped rather recently. Formerly family members who had dementia were thought of as senile and kept privately in