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FORTHCOMING -Journal of Medical Humanities summer 2006
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BEYOND THE STIGMA OF ALZHEIMER'S
Alive with Alzheimer’s
Cathy Stein Greenblat
Chicago: University of Chicago Press 2004
ISBN: 0226306585
Word count: 1,022
Until recently, films and literature addressing dementia have largely voiced the tragedy and loss of family members watching loved ones “disappear;” or the anguish and frustration of caregivers struggling to keep safe a loved one who knows no distinction between night and day, or to “toilet” a confused loved one who outweighs them. Such narratives capture the painful emotional and physical trials of Alzheimer’s disease.
But a new voice is making itself heard in the world of dementia – one that captures the almost indescribable moments of deep emotional and spiritual connection across a divide strewn with shattered words. This new voice dares to find humor, even joy, in our most fragile of moments. Cathy Stein Greenblat’s Alive with Alzheimer’s is emblematic of that new voice.
Greenblat, a visual sociologist, spent six weeks at Silverado Senior Living, a specialized residential care facility in Escondido, California. The book is a collection of black and white photos and text, ranging from interviews with staff and residents to personal reflections. Greenblat’s experience with dementia - both grandparents and her mother - prepared her for the tragedy of losing family members and the unquenchable yearning to repair their broken minds. It did not prepare her for the generosity of spirit she witnessed in both the staff and residents of Silverado.
Greenblat’s fears that she is next in line for this disease (“I have studied statistics, and I know how to access probabilities. My chances of avoiding this fate are not good” 3), make Greenblat an ideal purveyor of this new voice in the field of dementia literature. She feels the sting of the tragedy, yet encourages the reader to see beyond it. Alive with Alzheimer’s effectively captures the full range of living with dementia – from anger and anxiety to meaningful human connection – and is a welcome addition to the literature of Alzheimer’s, be it scientific studies, scholarly essays, caregiver memoirs, or autobiographies. Its accessible language and compelling imagery make it appropriate for a wide range of audiences including graduate and undergraduate gerontology, medical humanities and applied arts courses, as well as aging services practitioners and families.
The book’s structure underscores Greenblat’s message. Chapter One tells the stories of how she came to photograph the residents and staff of Silverado, and in turn how Silverado came to change her: “While I concur that the ravages of Alzheimer’s disease are devastating to the individual with the disease and to family members as they were and are to me, I have witnessed another, parallel reality, one that challenges our stereotypes and defies conventional approaches to Alzheimer’s care” (5). In subsequent chapters, we are introduced to characters that we’ll come to know better as the book unfolds. Photos are presented in series (an approach echoed on the cover), which shows the range of moods and moments in the lives of people with dementia. If one photo reinforces our fears, the next exudes such warmth that it dares us to release that fear. Examples include four shots of Clayton and Minna (18), a long-married couple who appear side by side in wheelchairs kissing, laughing, intently discussing, and looking vacant – yet holding hands. On page 52, Hilda is at the piano playing to the crowd. On the next, she continues to play, but looks lost and irritated. Again on 54, she plays as though it is the only thing keeping her from becoming completely unleashed.
Chapters borrow titles from the lines of a poem that opens the book. Chapter Two (“Long Silence Where There Once Was Song”) shares everyday life in Silverado through several characters, Hilda, Liz and Ken, Igor, MaryLou, and Clayton and Minna. Chapter Three (“Filling the Silent Spaces”) addresses the unique philosophy of Silverado, including the presence of pets and children, the structure of the day into meaningful activities, open engagement between staff and residents, and the freedom to go outside the facility. Greenblat follows staff and residents on outings to a pool hall and the Del Mar racetrack. Chapters Four (“Bringing Back the Songs”) and Five (“Waves of Remembrance”) depict the power of music at Silverado.
The photos in Chapter Five are the most powerful in the book – capturing Heather, the music therapist and her soothing presence with residents of Silverado. The book ends with a chapter of Greenblat’s reflections and a final chapter by Dr. Enid Rockwell, which presents a somewhat traditional narrative of the disease (the alarming demographics and financial costs), but pushes beyond it by articulating the qualities of affective dementia care team, and inviting us to move beyond our fears of the disease.
Not all of the photos in this book stand alone. Why, for example, do we see Heather at her car? And some of the single subject shots beg to be seen in relationship with residents, such as the photo of the “youngest ‘visitor’” to Silverado, a sleeping newborn. The title of the book still doesn’t sit well with me. It seems to me that “Alive with Alzheimer’s” seeks to combat those who think the opposite – which is “dead” with Alzheimer’s. But that isn’t exactly the point. I don’t think people dispute that people with Alzheimer’s are alive, but that there is no quality to that life.
In all, this book is an inspirational addition to the field. Like Elinor Fuchs’ Making an Exit (2005), Alive With Alzheimer’s dares us to think differently about dementia. Rather than let pain and fear shut us down, Greenblat encourages us to contextualize and channel it, and by doing so, relieve both the isolation of people living with the disease, and the sorrow and guilt of those witnessing it. She acknowledges the difficulty of doing this, but compels readers to take the leap with her:
Some family members will be as I was in my twenties with my grandfather, not knowing any better. I selfishly wanted him to be living in the present, in ‘reality,’ having ‘normal’ conversations with me. But that would have meant his acknowledging his life in a sterile nursing home, bored and lonely. How much better for him that he thought he was still actively practicing law and going to baseball games! (96)
Anne Basting (Ph.D) is the Director of the Center on Age & Community and Associate Professor of Theatre at the Peck School of the Arts at the University of Wisconsin Milwaukee. She is the Founder and Director of the National TimeSlips Project, creative storytelling with people with dementia (www.timeslips.org).
P.O. Box 413, Milwaukee, WI 53201, 414.229.2732, basting@uwm.edu
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