Do I Look at You with Love?

Reimagining the Story of Dementia


Do I Look at You with Love? were the words uttered by Mark Freeman’s mother when she learned, once again, that he was her son. This book explores the experience of dementia as it transpired during the course of the final twelve years of her life, from the time of her diagnosis until her death in 2016 at age 93. As a longtime student of memory, identity, and narrative, as well as the son of a woman with dementia, he had a remarkable opportunity to try to understand and tell her story. Much of the story is tragic. But there were other periods and other dimensions of relationship that were beautiful and that could not have emerged without her very affliction. In the midst of affliction there were gifts, arriving unbidden, that served to alert Freeman and his family to what is most precious and real. These are part of the story too. Part narrative psychology, part memoir, part meditation on the beauty and light that might be found amidst the ravages of time and memory, Freeman’s moving story is emblematic of nothing less than the bittersweet reality of life itself.

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Mark Freeman, Ph.D. (1986), University of Chicago, is Distinguished Professor of Ethics and Society at the College of the Holy Cross. His many writings include Rewriting the Self (1993), Hindsight (2010), and The Priority of the Other (2014).
"In Do I Look, the autoethnographic form enables Freeman to make the fullest use of himself as a person reflecting on his own life and as a scholar who can frame those reflections in relation to others’ thinking. (…) Do I Look at You with Love? broadens our imagination of research, while it troubles our sense of personal, community, and clinical responsibility." – Arthur W. Frank in the Journal of Medical Humanities, 17 July 2021.

“Written in a prose which is both scholarly and profoundly compassionate, Mark Freeman recounts the journey of his mother’s dementia from a son’s perspective, using insights gained from his years of thinking about how we come to tell the stories we live, what happens when those threads fall apart, and exploring what cultural tools are available to us to tell stories of decline and death. This book will bring fresh insights combined with a deep sense of recognition to anyone interested in questions of memory and identity, who has lived with someone with dementia, or even struggled with the gradual loss of a loved one. While the story told here is about a particular person, in a particular time and place, with a particular son, Freeman offers the reader a philosophical contemplation on the meaning of love and loss, inviting us to reflect on who we are in relation to others in our lives, and the trouble of making sense when those others can no longer be present.” – Molly Andrews, Professor of Political Psychology and co-director, Centre for Narrative Research, University of East London, author of Narrative Imagination and Everyday Life and Shaping History: Narratives of Political Change

“Through his deep, intimate portrait of his relationship with his mother over more than a decade of dementia, Freeman investigates questions central to being human: How do we locate ourselves in space and time? Do we still have a self when we don’t have our story? How do we discover our deepest level of connection to others? This engaging book gently challenges each of us to question our part in upholding society’s disdain for aging, illness and death and digs to the bedrock of what is needed for us to be good to one another. In a humble yet scholarly manner, Freeman invites us to develop our own understandings through visiting with him and his beloved mother on her journey through dementia to death.” – Susan Bluck, Professor of Psychology and Director, Life Story Lab, University of Florida

“For more than thirty years, Mark Freeman’s philosophically inspired contributions to narrative inquiry have widened and deepened our conceptual understanding of how stories work in and on our sense-making lives. In Do I Look at You with Love?, Freeman embarks on a different kind of inquiry, attempting to join his academic dexterity to his own (and his mother’s) lived experience in order to reimagine dementia. The result is a daring, refreshing, and intimate portrait that merges the academic and the personal, the intellectual and the spiritual, the desire to make sense and the attentiveness to let go of the sense one has made. Do I Look at You with Love? is a gift that guides readers to a deeper understanding of the human condition, the sacred, and the unknown.
Freeman’s most ingenious observations show how identities too often are imposed on us, requiring us to challenge the moral understanding and consequences of the stories, or fragments of story, that circulate widely in the community in which we find or locate ourselves. This makes the task of keeping the door open without expectations nearly impossible. We become entrapped by our own (or our culture’s) story. Freeman shows the many ways in which the caregiver of a parent with dementia lives in a canonical story saturated with dread, terror, worry, and hopelessness. Typically, the parent is ill and the caregiver wounded. How then to care with compassion, patience, and generosity; with gentleness, humanity, and honesty; with loving kindness? Freeman approaches these questions by candidly fusing doubt and hope, seeking a story that might prepare future caregivers (and students of the human sciences) for both the perils and the joys lying ahead. Refusing to romanticize or revile, Freeman gradually recognizes that what may violate, deprive, or disrupt us may also bring us closer to the moral good and a capacity to ‘be with’ that validates the priority of the other and allows a measure of beauty and joy to arise. In the process, he shows us what it can mean for an academic and/or a caregiver to strive for an acute self-consciousness and an appropriately shameless subjectivity. This is Freeman’s intellectual and spiritual gift to readers. Do I Look at You with Love? made me feel as if I was in conversation with another consciousness intent on feeling less alone and more human, and helping me, the reader, to feel that way as well. If this represents Freeman’s goals for an artful human science, I am all in.” – Art Bochner, Distinguished University Professor Emeritus, University of South Florida, author of Coming to Narrative: A Personal History of Paradigm Change in the Human Sciences and co-author (with Carolyn Ellis), Evocative Autoethnography: Writing Lives and Telling Stories

“Not only does Mark Freeman honor his mother's memory with this remarkable book, he honors his readers by entrusting them with a self—and soul—searching account of his mother's last 12 years with dementia. He has managed to incorporate many aspects of his philosophical scholarship and understanding of narrative psychology into a work that reads like an intimate conversation, often poetic in its beauty. At the same time, perhaps because he emphasizes the irreducible uniqueness of his relationship with his mother, it seems impossible to read his book without asking questions about the meaning of love and finitude and relation to the Other in one’s own life.” – Doris Brothers, Psychologist/Psychoanalyst, author of Toward a Psychology of Uncertainty: Trauma-Centered Psychoanalysis and Falling Backwards: An Exploration of Trust and Self-Experience

“Mark Freeman writes of his mother's dementia with a son's sharp wonderment and intimate sorrow. Layered over these, he offers a psychologist's search for understanding, a search that yields as many questions as answers. What is a self without memory, without narrative? Tracing the progression of his mother's loss, he discovers profound sweetness alongside the pain; moments of startling, salty humor; and eventually a kind of found poetry in their increasingly pared-down verbal exchanges, which read almost like nursery rhymes, full of puzzlement and beauty and love.” – Leah Hager Cohen, James N. and Sarah L. O'Reilly Barrett Professor in Creative Writing, College of the Holy Cross, author of Strangers and Cousins and The Grief of Others

“In Do I Look at You with Love?, Mark Freeman invites readers into his deep and complicated relationship with his mother as she moves through messy stages of Alzheimer’s disease. As he bears witness to his mother’s life—and his own—Mark rises to the needs of the situation by gradually giving himself over to the ‘priority of the other.’ Acknowledging both the terror and the joy of ‘being with’ his mother over years of her steady decline, Mark’s love story evokes empathy and identification with the demands of a life circumstance akin to being held ‘hostage.’ The stories he tells about their time together evoke the tragic dimensions yet ‘sacred beauty of finite life,’ the sometimes quiet joy of cognitive decline, and the love and care between mother and son. The astute conceptual analysis of the stages she (and they) go through provide insight into the mortal reality of the life we all live. The ethical questions that arise lead to innovative thinking about our role as researchers and characters in the personal stories we tell, and how we represent the ‘other.’ Do I Look at You with Love? is storytelling and analysis at its best, written by the most keenly observant and sensitive narrative psychologist of our time. Mark has accomplished his goal to ‘memorize’ his mother, and now this story lives with readers, no doubt moving us to do the same with our loved ones.” – Carolyn Ellis, Distinguished University Professor Emerita, University of South Florida, author of Revision: Autoethnographic Reflections on Life and Work and Final Negotiations: A Story of Love, Loss, and Chronic Illness

“Mark Freeman, a major thinker in narrative psychology, tells the story of his mother’s evolving dementia with his penetrating mind and his expansive heart. As he struggles to stay emotionally connected to her, he analyzes with his penetrating insight, the role and limits of narrative in our lives. This beautifully written book is both moving and illuminating, a must-read for anyone who lives or works with people with dementia or any psychologist interested in how we are created by, but exist beyond, our life narratives.” – Ruthellen Josselson, Professor of Clinical Psychology, Fielding Graduate University, author of Narrative and Cultural Humility: Lessons from the “Good Witch” Teaching Psychotherapy in China and Paths to Fulfillment: Women’s Search for Meaning and Identity

“In ‘memorizing’ carefully the phases of his mother’s journey with dementia, a journey he shared with her, Freeman draws on a wealth of insight into the links between memory, identity, and narrative to pen for us not just a moving tribute to what he calls dementia’s ‘tragic promise,’ but also a deeply thoughtful meditation on the precious beauty of Life itself, in all its complexity and mystery, transiency and loss.” – William Randall, Professor of Gerontology, St. Thomas University, author of In Our Stories Lies Our Strength: Aging, Spirituality, and Narrative and The Narrative Complexity of Ordinary Life: Tales from the Coffee Shop

Introduction: A Different Kind of Story
Chapter 1: A Relational Perspective on Dementia
Chapter 2: Protest
Chapter 3: Presence
Chapter 4: Dislocation
Chapter 5: Release
Chapter 6: Death, Dementia, and the Face of the Divine
Coda: Reimagining Dementia, Reimagining Life

About the Author
All interested in dementia, narrative psychology, qualitative inquiry, and autoethnography, including nurses, social workers, and physicians. Target audiences include undergraduate and graduate students, researcher-scholars, practitioners, and general readers.
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