front cover of Alive with Alzheimer's
Alive with Alzheimer's
Cathy Stein Greenblat
University of Chicago Press, 2004
The confusion, losses, and devastation of Alzheimer's disease are familiar to the millions of Americans suffering from the disease and to their family members. Understandably, declining abilities and changing personal characteristics shape our picture of the disease, leading some to refer to the "double death" of Alzheimer's in which the sufferer drifts away long before his or her eventual physical end.

This small, tender volume of 85 photographs and accompanying discussion powerfully shows the limitations of this view. Cathy Stein Greenblat, an internationally respected sociologist and photographer, demonstrates in Alive with Alzheimer's that, while the ravages of the disease are real, Alzheimer's sufferers can do more than survive, they can thrive. Her images, interviews, and observations attest to the possibility of their being "alive" with Alzheimer's far beyond the expectations of the general public and even of many physicians with long experience with the disease.

Greenblat offers a new vision, taking us into a world of life-enhancing institutional care. Nursing homes and similar facilities don't have to be a last resort; as Greenblat shows, with a dedicated and experienced staff and an enriched environment (that includes respect, choices, pets, and music), extraordinary changes can be effected in Alzheimer's patients. Alive with Alzheimer's, the first photographic book on the disease, offers hope and inspiration. Moreover, its vivid, impressive evidence that ongoing stimulation in a good institutional setting can sustain Alzheimer's patients at a far higher level than is generally believed has significant implications for personal and policy decisions.

The new standard of care chronicled in Alive with Alzheimer's will provide hope and inspiration to those touched by the disease. As Dr. Enid Rockwell writes in her Afterword to Greenblat's moving book, "These photographs are extraordinary for practitioners, for family members, for everyone to see what's going on with these people. The stimulation pictured in this book is more powerful than any medication that we will have in our lifetime. . . . They so vividly show us that there are people inside these bodies, people with personalities, who experience emotion, and they show that there is life after Alzheimer's."
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Alzheimer’s and Dementia
A Practical and Legal Guide for Nevada Caregivers
Kim Boyer
University of Nevada Press, 2011
            Individuals or families receiving a diagnosis of Alzheimer’s disease, dementia, or brain damage from a stroke face daunting questions: how to provide for care when the patient can no longer manage his or her own affairs, how to protect their rights and property, where to go for help, and how to cope with the day-to-day challenges of fading memory and diminished cognition. Here is a comprehensive guide specifically for aging Nevadans and for family members, professional caregivers, and health care workers who help them.
The authors—an elder law attorney and a specialist in geriatric care management—offer readers useful advice from the perspective of Nevada resources and Nevada law, addressing such topics as the legal and financial steps that patients and their families can take to protect themselves and their assets, paying for long-term care, arranging for guardianship, and tending to the details that follow the death of a loved one.
 This edition, updated in 2011, includes information about recent changes in laws that affect seniors, new research and treatments, and a new guide to resources throughout the state that can provide assistance to people afflicted with these medical conditions.
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Close to Me, but Far Away
Living with Alzheimer's
Burton M. Wheeler
University of Missouri Press, 2001

Each day Burt Wheeler is plagued by the same question. When did it happen? If he could pinpoint the beginning, then he might begin to make peace with himself. He vividly remembers when the doctor diagnosed Kee, his loving wife of over fifty years, with "Alzheimer-type dementia." But, as hard as he tries, it's impossible for him to determine when his wife's dementia started. He remembers her bout with depression, but that, he thinks, was surely due to her breast cancer. There was their dream vacation to Greece when Kee seemed so tired and indifferent. There were the unopened books, when reading had always been such a source of pleasure to her. And, he recalls, the gradual personality changes with friends, and even with family.

Wheeler started writing this book as a form of self-therapy when he found himself thrust into the role of caretaker to his wife--a role for which he felt unprepared. He wrote in memory of the very special woman his wife had been—a wonderful mother, charming and gracious, as well as a deeply respected psychotherapist. She was also his best friend, and he loved her. So, to some degree, this is a love story—a story about two people who have shared life's ups and downs for over fifty years. It's also about commitment.

In Close to Me, but Far Away, Wheeler provides insight into what a caregiver's day is like, as he shares his most intimate thoughts with us. The book provides a window into the author's personal life as he seeks to confront his own ineptitude and the occasional despair he feels as he deals daily with Alzheimer's. He also touches on the question of what keeps him going through times of exhaustion and frustration. Part of his answer lies in holding tenaciously to memories, and part lies in what he believes is a human's extraordinary capacity to continue plodding along simply because he must. Wheeler also believes in rejoicing in the beauty that can be experienced, and he believes in humor, humor achieved only by distancing ourselves from the events that so deeply engage us. And, of course, there is also the indefinable nature of love.

Alzheimer's is a terrifying and horrible disease, as much for loved ones as for the patient. Those who are caregivers or friends of Alzheimer's patients or caregivers will empathize with Burton Wheeler's story. And some might receive comfort from his words or learn from him. Because Alzheimer's is a disease that could affect anyone, Close to Me, but Far Away is a story that should be read by all.

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Day In Day Out Alzheimers
Karen Lyman
Temple University Press, 1993
"...an insightful and constructive view of persons with dementia and their caregivers." --Carroll L. Estes, Institute for Health & Aging, University of California, San Francisco Stress for care providers and distress for clients with varying degrees of dementia--these are the dynamics Karen A. Lyman discovered in her study of eight Alzheimer's day care centers in California. Speaking as an advocate for both day care providers and people with Alzheimer's disease, the author presents a model of "what works" in Alzheimer's care. Many strategies developed by caregivers are self-defeating, Lyman found. Drawing on personal reflections, interviews, and anecdotes, she demonstrates how caregivers' struggle to maintain order through often unnecessary control contributed to patients' increased sense of self-doubt, anxiety, and incompetence. Negative expectations by caregivers brought on depression and rapid intellectual decline in patients, a "sense of hopelessness" that has been called "therapeutic nihilism." Lyman identifies unsupportive institutional policies, restrictive environments, and poorly organized programs as chronic sources of stress. The alternatives she offers meet caregivers' needs and permit clients a degree of self-determination and identity. Her model for care will be of great interest to gerontological professionals, policy makers, and family members dealing with victims of Alzheimer's disease. "[A]n insightful, comprehensive analysis of the unique reciprocal relationship between people with Alzheimer's disease and people who care for them. The author's compassionate concern emphasizes the need for innovative methods of care which alleviate stress for the care-giver and distress for the patients...an important book for policy makers, health care administrators, medical and nursing students, and all others who care." --Maggie Kuhn, Founder and National Convener of the Gray Panthers
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The Emotional Journey of the Alzheimer's Family
Robert B. Santulli and Kesstan Blandin
Dartmouth College Press, 2015
Alzheimer’s disease is a growing public health crisis. According to the Alzheimer’s Association, there are 5.4 million victims of this disease; by 2050, there will be close to 15 million people who suffer from this debilitating disorder of memory, thinking, personality, and functioning. The disease profoundly affects immediate family members, close friends, and neighbors. These people—the Alzheimer’s family—undergo tremendous psychological and emotional change as they witness the cruel and relentless progression of the disease in their loved one. Incorporating over thirty years of experience with Alzheimer’s patients and their families with current medical knowledge, the authors chart the complex emotional journey of the Alzheimer’s family from the onset of the disease through the death of the loved one. They discuss the anger that rises in the face of discordant views of the disease, the defenses that emerge when family members are unwilling to accept a dementia diagnosis, and the common emotions of anxiety, guilt, anger, and shame. They focus especially on grief as the core response to losing a loved one to dementia, and describe the difficult processes of adaptation and acceptance, which lead to personal growth. Final chapters emphasize the importance of establishing a care community and how to understand and cope with personal stress. This volume will be useful to medical professionals and ordinary people close to or caring for a person with dementia.
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Father Flashes
Tricia Bauer
University of Alabama Press, 2011
Father Flashes reimagines what the novel can be or do. Composed of stunning vignettes that capture the deterioration of a father’s mind and body, this novel provides poetic insight into the complex workings of a father-daughter relationship. As the father collapses, what appears is the daughter’s struggle to simply cope. In prose composed of intense and moving shards, Tricia Bauer delivers a revealing account of the gradual decomposition of all that is familiar and of a daughter’s gathering of memories to form the arresting collage that is Father Flashes.
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The Final Season
The Perseverance of Pat Summitt
Maria Cornelius
University of Tennessee Press, 2016
With 1,098 wins and eight national championships, Lady Vol Coach Pat Summitt has left a remarkable legacy of perseverance, leadership, and passion for the game—but her victories on the court aren’t the only legacy she has left in her wake.

Since the beginning of her career as Lady Vol head coach at twenty-two years old, Pat Head Summitt effectively established the University of Tennessee Lady Vols as the top women’s athletics program in the nation. The winningest coach in the history of NCAA basketball, Summitt overcame one obstacle after another on the road to every victory, but it is the lives she has impacted along the way that tell the story of her true legacy. Forever a role model for young women, expecting nothing but the best from her players and from those around her, her legacy has never faltered—not even during her final season as head coach, when she faced her fiercest adversary yet: the diagnosis of early-onset Alzheimer’s disease.

In The Final Season: The Perseverance of Pat Summitt, Maria M. Cornelius tells the story of her final coaching season through the eyes of those who know her best, from players to support staff to Summitt’s closest friends and advisors. Beginning with the diagnosis that shook the Tennessee community in the summer of 2011 and continuing through to the final game of the 2011–12 season, The Final Season presents readers with a behind-the-scenes look at the conclusion of Summitt’s coaching career, detailing from the perspective of a sports writer how her diagnosis impacted her players and her staff as well as her fans.

With forewords by former Lady Vol Candace Parker and Swish Appeal editor Mike Robinson, The Final Season reveals how Summitt’s remarkable story of perseverance not only united a team of young women but also brought an entire sports following together, revealing an incredible support system that spanned far beyond Summitt’s Tennessee community. The coach’s determined spirit, selfless love, and sense of humor shine through the pages of Cornelius’s book, painting for readers the picture of a beloved leader and detailing the personal moments of defeat and triumph that make Summitt a true champion.
 
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The Handholder's Handbook
A Guide for Caregivers of People with Alzheimer's or Other Dementias
Teitel, Rosette
Rutgers University Press, 2001
 In a national survey, 19 million Americans said they have a family member with Alzheimer's, and 37 million said they knew someone who had it. But when Rosette Teitel found herself in the role of caregiver to her ailing husband, she could find no books that answered her practical needs: How do you give a 170-pound man a shower? How do you pick him up when he falls? What support networks are available? When is it time to consider a nursing home and how do you find one?
While many books about Alzheimer's disease focus on the illness and the patient, Teitel draws on her own experience to tackle subjects rarely dealt with in other self-help books. She covers topics such as managing the expenses of long-term care through Medicaid, estate planning, and preparing for the patient's death and the loss of someone whose daily survival has been at the center of one's existence. The chapters contain information on diagnosis, treatment, and the progression of the disease; the physical and emotional changes involved with the day-to-day caregiving; support networks; nursing homes; finances; death of the patient; mourning, and life after the patient's death; and interviews with caring children of parents with Alzheimer's disease. In addition, Teitel provides a helpful list of frequently asked questions, scheduling and memory aids, and websites where readers can find resources.
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Honeycomb
Poems
Carol Frost
Northwestern University Press, 2010
The poems in PEN Award–winning author Carol Frost’s ninth collection spring from her experiences with her mother’s struggle with Alzheimer’s disease, forming a deeply moving meditation on memory and its role in the creation and evolution of identity and relationships. Frost maintains complete command of her imaginative leaps between the natural and spiritual worlds in diverse poetic forms. Using the disappearance of bees as her prevailing metaphoric backdrop, the poet deftly explores the varied emotions occasioned by her mother’s slow deterioration. Like its eponym, Honeycomb is stunning in its details, but it wears its craftsmanship lightly, yielding an accessible yet profound work.
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I Can't Remember
Family Stories of Alzheimer's Disease
Esther Strauss Smoller
Temple University Press, 1997
I Can't Remember is an intimate photo essay of four families and their process of coping with Alzheimer's disease -- a process of coming to terms with the practical and emotional consequences of a disease that changes the entire family dynamic. Family members tell their stories of first denying that their loved one cold be suffering from Alzheimer's, then dealing with the changing relationships among family members and the intensifying emotions, as old family troubles are stirred up and new feelings of despair and love appear.

Photographs and  personal narratives are woven together to show both the unpleasant and the beautiful sides of the struggle for connection between spouses and across generations. Smoller has a gift for capturing people as they interact, whether it's arguing around the kitchen table or dancing cheek to cheek.

Each family's story is different, but all four families share common pain and frustration. A highway patrolman who has early onset Alzheimer's describes what it is like to have Alzheimer's. His wife tells a parallel story of life together after hearing the diagnosis. A daughter gives the following account of her mother: "I though that it would be helpful if mother spent time in my home in Colorado. Before this visit, I was in denial, convinced that she suffered from depression and not Alzheimer's disease. ... On the plane trip to Colorado, I was brought into the stark, cold reality that Mom had Alzheimer's. She did not know where she was or where she was going. Upon arrival, she did not recognize my home, although she had visited me numerous times in the past. She tried sleeping in the bathtub the first night."

Another daughter relates that she was unaware of the onset of Alzheimer's in her mother, because her mother was such a "wonderful actress." Eventually the memory problems were no longer confined to where things belonged in the kitchen, but extended into driving off at random, driving in circles in a parking lot in the middle of the night or as much as 75 miles away from home.

I Can't Remember gives an intimate glimpse into the hearts and minds of caregivers and patients. Supportive social networks are essential for healthy life. This book provides the impetus caregivers need to develop contacts that can provide support. Smoller offers a glimpse of the frustration and losses faced by those who deal with Alzheimer's, as well as the potential to transcend those losses -- even is only for a time -- through love and hope.
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The Last of His Mind
A Year in the Shadow of Alzheimer’s
John Thorndike
Ohio University Press, 2011
NEW EDITIONS AVAILABLE: Paperback ISBN 978–0804012362 / Electronic ISBN 978–0804041201 Joe Thorndike was managing editor of Life at the height of its popularity immediately following World War II. He was the founder of American Heritage and Horizon magazines, the author of three books, and the editor of a dozen more. But at age 92, in the space of six months he stopped reading or writing or carrying on detailed conversations. He could no longer tell time or make a phone call. He was convinced that the governor of Massachusetts had come to visit and was in the refrigerator. Five million Americans suffer from Alzheimer’s, and like many of them, Joe Thorndike’s one great desire was to remain in his own house. To honor his wish, his son John left his own home and moved into his father’s upstairs bedroom on Cape Cod. For a year, in a house filled with file cabinets, photos, and letters, John explored his father’s mind, his parents’ divorce, and his mother’s secrets. The Last of His Mind is the bittersweet account of a son’s final year with his father, and a candid portrait of an implacable disease. It’s the ordeal of Alzheimer’s that draws father and son close, closer than they have been since John was a boy. At the end, when Joe’s heart stops beating, John’s hand is on his chest, and a story of painful decline has become a portrait of deep family ties, caregiving, and love.
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Mediating Alzheimer's
Cognition and Personhood
Scott Selberg
University of Minnesota Press, 2022

An exploration of the representational culture of Alzheimer’s disease and how media technologies shape our ideas of cognition and aging 
 

With no known cause or cure despite a century of research, Alzheimer’s disease is a true medical mystery. In Mediating Alzheimer’s, Scott Selberg examines the nature of this enduring national health crisis by looking at the disease’s relationship to media and representation. He shows how collective investments in different kinds of media have historically shaped how we understand, treat, and live with this disease. 

Selberg demonstrates how the cognitive abilities that Alzheimer’s threatens—memory, for example—are integrated into the operations of representational technologies, from Polaroid photographs to Post-its to digital artificial intelligence. Focusing on a wide variety of media technologies, such as neuroimaging, art therapy, virtual reality, and social media, he shows how these cognitively oriented media ultimately help define personhood for people with Alzheimer’s. Media have changed the practices of successful aging in the United States, and Selberg takes us deep into how technologies like digital brain-training and online care networks shape ideas of cognition and healthy aging.

Packed with startlingly fresh insights, Mediating Alzheimer’s contributes to debates around bioethics, the labor of caregiving, and a national economy increasingly invested in communication and digital media. Probing the very technologies that promise to save and understand our brains, it gives us new ways of understanding Alzheimer’s disease and aging in America.

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Thinking About Dementia
Culture, Loss, and the Anthropology of Senility
Leibing, Annette
Rutgers University Press, 2006

Bringing together essays by nineteen respected scholars, this volume approaches dementia from a variety of angles, exploring its historical, psychological, and philosophical implications. The authors employ a cross-cultural perspective that is based on ethnographic fieldwork and focuses on questions of age, mind, voice, self, loss, temporality, memory, and affect.

Taken together, the essays make four important and interrelated contributions to our understanding of the mental status of the elderly. First, cross-cultural data show that the aging process, while biologically influenced, is also culturally constructed. Second, ethnographic reports raise questions about the diagnostic criteria used for defining the elderly as demented. Third, case studies show how a diagnosis affects a patient's treatment in both clinical and familial settings. Finally, the collection highlights the gap that separates current biological understandings of aging from its cultural meanings.

As Alzheimer's disease and other forms of dementia continue to command an ever-increasing amount of attention in medicine and psychology, this book will be essential reading for anthropologists, social scientists, and health care professionals.

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