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.
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.
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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