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In My Two Elaines, author Marty Schreiber, former governor of Wisconsin, watches his beloved wife, Elaine, gradually transform from the woman he fell in love with in high school, and who diligently supported his political career, to the Elaine who knows she is declining and can’t remember how to cook a meal, and finally to the Elaine who no longer recognizes Marty or their children. One part love story, one part practical advice, this compelling book includes several unique elements: Excerpts from Elaine’s journal, recounting her thoughts, concerns, and frustrations as the disease progresses A recurring feature called “What I Wish I’d Known,” which provides helpful takeaways for caregivers based on Marty’s observations about what he wishes he’d known sooner and done differently A Q&A between Marty and neuropsychologist Dr. Michelle Braun, to equip caregivers with the right questions to ask and empower them to advocate for their loved ones and their own needs Beyond sincere, practical advice, My Two Elaines gives the reader permission to feel the full spectrum of emotions, including humor, even in the face of this relentless illness. And the book speaks to anyone touched by this disease--spouse, child, friend, or family member.
As the largest generation in U.S. history - the population born in the two decades immediately following World War II - enters the age of risk for cognitive impairment, growing numbers of people will experience dementia (including Alzheimer's disease and related dementias). By one estimate, nearly 14 million people in the United States will be living with dementia by 2060. Like other hardships, the experience of living with dementia can bring unexpected moments of intimacy, growth, and compassion, but these diseases also affect people's capacity to work and carry out other activities and alter their relationships with loved ones, friends, and coworkers. Those who live with and care for individuals experiencing these diseases face challenges that include physical and emotional stress, difficult changes and losses in their relationships with life partners, loss of income, and interrupted connections to other activities and friends. From a societal perspective, these diseases place substantial demands on communities and on the institutions and government entities that support people living with dementia and their families, including the health care system, the providers of direct care, and others. Nevertheless, research in the social and behavioral sciences points to possibilities for preventing or slowing the development of dementia and for substantially reducing its social and economic impacts. At the request of the National Institute on Aging of the U.S. Department of Health and Human Services, Reducing the Impact of Dementia in America assesses the contributions of research in the social and behavioral sciences and identifies a research agenda for the coming decade. This report offers a blueprint for the next decade of behavioral and social science research to reduce the negative impact of dementia for America's diverse population. Reducing the Impact of Dementia in America calls for research that addresses the causes and solutions for disparities in both developing dementia and receiving adequate treatment and support. It calls for research that sets goals meaningful not just for scientists but for people living with dementia and those who support them as well. By 2030, an estimated 8.5 million Americans will have Alzheimer's disease and many more will have other forms of dementia. Through identifying priorities social and behavioral science research and recommending ways in which they can be pursued in a coordinated fashion, Reducing the Impact of Dementia in America will help produce research that improves the lives of all those affected by dementia.
In 2009, my wife of over fifty-eight years was diagnosed with dementia with Alzheimers symptoms. My caregiving responsibilities began before that time and continued until her death in January 2018. She was provided care in her own home. As time went by, the caregiver duties became more and more demanding. It was truly twenty-four hours each day and seven days each week. My sweetheart was referred to the hospice program as a patient beginning in 2013 with a life expectancy of six months or less. At the time of her passing, she had been a hospice patient for four years, eleven months, and five days. The Diary of a Caregiver begins with her entry into the hospice program and continues until her death. Caregiving can be very frustrating at times as one never knows what to expect or when to expect it. The Diary of a Caregiver identifies many of the problems and frustrations associated with care of a dementia patient. It also identifies different techniques and solutions to some of those problems. It should be of interest to anyone who is involved in caregiving, especially those who are just beginning.
With the heartfelt prose of a loving daughter, Patti Davis provides a life raft for the caregivers of Alzheimer’s patients. “For the decade of my father’s illness, I felt as if I was floating in the deep end, tossed by waves, carried by currents, but not drowning,” writes Patti Davis in this searingly honest and deeply moving account of the challenges involved in taking care of someone stricken with Alzheimer’s. When her father, the fortieth president of the United States, announced his Alzheimer’s diagnosis in an address to the American public in 1994, the world had not yet begun speaking about this cruel, mysterious disease. Yet overnight, Ronald Reagan and his immediate family became the face of Alzheimer’s, and Davis, once content to keep her family at arm’s length, quickly moved across the country to be present during “the journey that would take [him] into the sunset of [his] life.” Empowered by all she learned from caring for her father—about the nature of the illness, but also about the loss of a parent—Davis founded a support group for the family members and friends of Alzheimer’s patients. Along with a medically trained cofacilitator, she met with hundreds of exhausted and devastated attendees to talk through their pain and confusion. While Davis was aware that her own circumstances were uniquely fortunate, she knew there were universal truths about dementia, and even surprising gifts to be found in a long goodbye. With Floating in the Deep End, Davis draws on a welter of experiences to provide a singular account of battling Alzheimer’s. Eloquently woven with personal anecdotes and helpful advice tailored specifically for the overlooked caregiver, this essential guide covers every potential stage of the disease from the initial diagnosis through the ultimate passing and beyond. Including such tips as how to keep a loved one hygienic, and careful responses for when they drift to a time gone by, Davis always stresses the emotional milestones that come with slow-burning grief. Along the way, Davis shares how her own fractured family came together. With unflinching candor, she recalls when her mother, Nancy, who for decades could not show her children compassion or vulnerability, suddenly broke down in her arms. Davis also offers tender moments in which her father, a fabled movie star whom she always longed to know better, revealed his true self—always kind, even when he couldn’t recognize his own daughter. An inherently wise work that promises to become a classic, Floating in the Deep End ultimately provides hope to struggling families while elegantly illuminating the fragile human condition.
This book is about how we dealt with my mom with Alzheimer's. It's written with humor and heart.
Elder Rage, or Take My Father... Please: How to Survive Caring for Aging Parents--is a riveting true story as well as an extensive self-help book, with solutions for effective management, medically and behaviorally, of challenging elders who resist care. Jacqueline Marcell's poignant and often-humorous story of caring for her challenging elderly father and sweet but frail mother, addresses issues like how to get an obstinate elder to: give up driving, accept a caregiver, see a different doctor, take medication, go to adult day care, move to a new residence, etc. Includes: Behavior Modification Guidelines, 25 Q&A's=How Do I Handle My Elderly Loved One Who...?, Long-Term Care Insurance, Ten Warning Signs of Alzheimer's, How is Alzheimer's Diagnosed, Three Stages of Alzheimer's, Startling Statistics, Other Diseases That Act Like Alzheimer's, Jacqueline's Top Ten Recommendations, Hope For The Future, The Search for the Cure, Valuable Resources, Recommended Reading. Internationally known dementia specialist, Rodman Shankle, MS MD, contributes the Addendum: A Physician's Guide to Treating Dementia. Over 50 endorsements include: Hugh Downs, Regis Philbin, Dr. Dean Edell, Duke University Center for Aging, Dr. Nancy Snyderman/ABC News, Leeza Gibbons, Senator John D. Rockefeller IV, Rudy Tanzi/Harvard Medical School, and The Johns Hopkins Memory Clinic. http://www.elderrage.com
The number of elderly and disabled adults who require assistance with day-to-day activities is expected to double over the next twenty-five years. As a result, direct care workers such as home care aides and certified nursing assistants (CNAs) will become essential to many more families. Yet these workers tend to be low-paid, poorly trained, and receive little respect. Is such a workforce capable of addressing the needs of our aging population? In Who Will Care for Us? economist Paul Osterman assesses the challenges facing the long-term care industry. He presents an innovative policy agenda that reconceives direct care workers’ work roles and would improve both the quality of their jobs and the quality of elder care. Using national surveys, administrative data, and nearly 120 original interviews with workers, employers, advocates, and policymakers, Osterman finds that direct care workers are marginalized and often invisible in the health care system. While doctors and families alike agree that good home care aides and CNAs are crucial to the well-being of their patients, the workers report poverty-level wages, erratic schedules, exclusion from care teams, and frequent incidences of physical injury on the job. Direct care workers are also highly constrained by policies that specify what they are allowed to do on the job, and in some states are even prevented from simple tasks such as administering eye drops. Osterman concludes that broadening the scope of care workers’ duties will simultaneously boost the quality of care for patients and lead to better jobs and higher wages. He proposes integrating home care aides and CNAs into larger medical teams and training them as “health coaches” who educate patients on concerns such as managing chronic conditions and transitioning out of hospitals. Osterman shows that restructuring direct care workers’ jobs, and providing the appropriate training, could lower health spending in the long term by reducing unnecessary emergency room and hospital visits, limiting the use of nursing homes, and lowering the rate of turnover among care workers. As the Baby Boom generation ages, Who Will Care for Us? demonstrates the importance of restructuring the long-term care industry and establishing a new relationship between direct care workers, patients, and the medical system.
The book recommended by dementia experts and family caregivers as the most complete, practical guide to Alzheimer's and other dementias-now updated and expanded through end-of-life care. This new edition of Surviving Alzheimer's offers the best, most current thinking on how to help a loved one with memory loss and related symptoms without sacrificing YOU. You'll learn: What's behind odd, frustrating behaviors like repetition, wandering, personality changes, bathing resistance, and aggression-and what you can do How to defuse resentment, guilt, and family friction What to say for better communication and more cooperation Special advice for spouses, out-of-town caregivers, and other specific situations 100s of confidence-raising solutions from top doctors, social workers, dementia specialists, and family caregivers All in a fast, scannable format perfect for busy or overwhelmed dementia helpers.
SHORTLISTED FOR THE TORONTO BOOK AWARD AS SEEN ON GLOBAL NEWS TV'S THE MORNING SHOW A CBC CANADIAN BOOK TO READ FOR MENTAL HEALTH WEEK Drawing on the author’s seven years of caring for his mother through Alzheimer’s, Be With: Letters to a Caregiver is what its title promises: four dispatches to an anonymous long-term caregiver. In brief passages that cast fresh light on what it means to live with dementia, Barnes shares trials, insights, solace—and, ultimately, inspiration. Meant to be a companion in waiting rooms, on bus routes, or while a loved one naps, Be With is a dippable source of clarity for harried readers who might only have time for a few lines or paragraphs. Mike Barnes writes with sensitivity and grace about fellowship, responsibility, and joyful relatedness—what it means to simply be with the people that we love.
A moving memoir and an extraordinary love story that shows how an expert physician became a family caregiver and learned why care is so central to all our lives and yet is at risk in today's world. When Dr. Arthur Kleinman, an eminent Harvard psychiatrist and social anthropologist, began caring for his wife, Joan, after she was diagnosed with early-onset Alzheimer's disease, he found just how far the act of caregiving extended beyond the boundaries of medicine. In The Soul of Care: The Moral Education of a Husband and a Doctor, Kleinman delivers a deeply humane and inspiring story of his life in medicine and his marriage to Joan, and he describes the practical, emotional and moral aspects of caretaking. He also writes about the problems our society faces as medical technology advances and the cost of health care soars but caring for patients no longer seems important. Caregiving is long, hard, unglamorous work--at moments joyous, more often tedious, sometimes agonizing, but it is always rich in meaning. In the face of our current political indifference and the challenge to the health care system, he emphasizes how we must ask uncomfortable questions of ourselves, and of our doctors. To give care, to be "present" for someone who needs us, and to feel and show kindness are deep emotional and moral experiences, enactments of our core values. The practice of caregiving teaches us what is most important in life, and reveals the very heart of what it is to be human.