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The Long Goodbye: Dementia Diaries discusses a disease that is both personal and social for more than five million patients and their families and friends in the United States today. Now that there are medical strategies for preventing and/or curing strokes, heart attacks, even cancer, many more people are going to live into the dementia years in the near future. Although many dementia horror stories circulate in conversation and in the media, they are not the whole story. Creative approaches to loving a dementia patient can make for a valuable learning experience for family and caregivers.
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 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).
"For the uncharted landscape of dementia, there is no wiser guide than Margaret Miles. It's costly wisdom, for the disease stole her husband by inches. Miles chronicles the raw pain of his gathering confusion, but she also finds surprising beauty in funny and holy moments along the way. Moving beyond mere memoir, Miles interrogates Christian understandings of the 'self' and diseases in the body politic, like poverty, discrimination, and injustice. This is theology at its edgy best."
--Martha E. Stortz, Bernhard M. Christensen Professor for Religion and Vocation, Augsburg College
"Few books have opened whole new worlds of unknown and unexperienced arenas. Margaret Miles's Long Goodbye is one of them. Miles explores in subtle and rich ways the experience of saying goodbye to her beloved husband as he recedes more and more into his dementia. It is a love story and an expression of beauty in the face of what is increasingly becoming a common reality in our society. How do we find beauty as those we love become strangers to us? Miles writes the love story weaving together fragments of lived experience from ancient thinkers to modern writers to expose the richness and wonder of living with someone with dementia. . . . Miles has opened that world to us to understand and to wonder at the ability of a person to find beauty there in the midst of anguish. This is an important and timely book that everyone should read, not just those with loved ones who suffer from dementia, but for everyone who lives in our society where dementia is becoming a more common disease."
--Richard Valantasis, Author of Centuries of Holiness and The Making of the Self; Retired professor of Ascetical Theology and Early Christian Studies
"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