How to live a full and rewarding life after a dementia diagnosis. Keith Oliver was diagnosed with young onset dementia at the age of 55. Unaware at the time that dementia could affect people of this age, Keith set out to increase public awareness of the condition and dispel the myths about the illness. Using a unique diary format, this intimate and empowering memoir captures what everyday life with dementia is like, offering both a candid look at its struggles, and a profoundly moving account of Keith's journey to live a full life afterwards.
Felicity Jaffé¿s aim in writing this book is to send out helpful advice on how to cope with dementia from her personal experience.She has made something first-rate, genuinely informative and useful, and enormously human, with dignity and humour, including many practical ideas.One gets the feeling that all along she is remembering and expressing what she remembers, not necessarily for her benefit, but for the benefit of a wider community.This book will inspire the families and carers of dementia suffers as it deals with dementia in a positive and happy way.
Soul-searing, life-testing situations have what some call “fall-out blessings.” The book is about understanding some of the deeper lessons we are exposed to through caring for individuals with Alzheimer’s and other types of dementia. We all want a cure. But in the meantime, while this illness is still with us, how can we create a quality of life for each person in each stage of the disease? How can we look deeper into situations that, at first glance, look hopeless and destructive in order to find opportunities for insight, inspiration, and great understanding of ourselves and those we love? How can we allow the full measure of the experience to unfold and be felt with as much of ourselves as we can bring to bear? This book will help people caring for those going through the difficult dementia journey find a way, through the tumultuous waves, to remain awake and open to the blessing of a journey that opens the heart, nurtures compassion, and ultimately enables each of us to be better human beings. It is also for those brave individuals living with memory loss illnesses, so that they be supported and allowed to live their experience fully in their own unique way, to express themselves, to love and be loved, and to be sheltered from harm—that with each stage of the progression, those around the person with dementia find ways to emphasize the loved one’s remaining strengths rather than spotlight their weaknesses. A person with dementia has a whole and well spirit and, in the broadest sense, their brain is a vehicle of self-expression; it does not define their essence. Finally, this book addresses head on the final stage of the disease, when the brain has exhausted all its compensatory ability and the individual is no longer able to take part in regular day-to-day life. At this advanced stage of the disease process, people with dementia are in a deep, internal state that caregivers generally cannot access and share. It can be a very disheartening time. This internal state separates the person with dementia from those around them; however, rather than thinking of it as a prison wall separating the person with dementia from the caregiver, it may be more helpful to think of the person having retreated into a cloistered existence for a while, affording them the time needed by the soul to attend to deeper aspect of the self on a spiritual level. This phase also allows those around the person to honor the vessel, or body, that has housed the loved in in this life and prepare to let them go. When ready the individual will know the time to leave, and if allowed, will let go. Coming from a rich professional background in caring, Megan Carnarius clearly outlines the different stages of dementia and highlights many practical aspects of dementia care, suggesting accessible tools for family and professionals alike. She also addresses the more subtle, spiritual dimensions of this illness with much compassion and understanding, offering new insights into areas that have not been explored in other books on the disease.
A New York Times Book Review Editors’ Choice An essential book for those coping with Alzheimer’s and other cognitive disorders that “reframe[s] our understanding of dementia with sensitivity and accuracy . . . to grant better futures to our loved ones and ourselves” (The New York Times). An estimated fifty million people in the world suffer from dementia. Diseases such as Alzheimer's erase parts of one's memory but are also often said to erase the self. People don't simply die from such diseases; they are imagined, in the clichés of our era, as vanishing in plain sight, fading away, or enduring a long goodbye. In On Vanishing, Lynn Casteel Harper, a Baptist minister and nursing home chaplain, investigates the myths and metaphors surrounding dementia and aging, addressing not only the indignities caused by the condition but also by the rhetoric surrounding it. Harper asks essential questions about the nature of our outsized fear of dementia, the stigma this fear may create, and what it might mean for us all to try to “vanish well.” Weaving together personal stories with theology, history, philosophy, literature, and science, Harper confronts our elemental fears of disappearance and death, drawing on her own experiences with people with dementia both in the American healthcare system and within her own family. In the course of unpacking her own stories and encounters—of leading a prayer group on a dementia unit; of meeting individuals dismissed as “already gone” and finding them still possessed of complex, vital inner lives; of witnessing her grandfather’s final years with Alzheimer’s and discovering her own heightened genetic risk of succumbing to the disease—Harper engages in an exploration of dementia that is unlike anything written before on the subject. A rich and startling work of nonfiction, On Vanishing reveals cognitive change as it truly is, an essential aspect of what it means to be mortal.
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.
This is a literary collection that illuminates the darkness of Alzheimer's disease. It is a unique collection of poetry and short prose about the disease written by 100 contemporary writers - doctors, nurses, social workers, hospice workers, daughters, sons, wives, and husbands - whose lives have been touched by the disease.
Winner of the Michael Ramsay Prize 2016 Dementia is one of the most feared diseases in Western society today. Some have even gone so far as to suggest euthanasia as a solution to the perceived indignity of memory loss and the disorientation that accompanies it. Here, John Swinton develops a practical theology of dementia for caregivers, people with dementia, ministers, hospital chaplains, and medical practitioners as he explores two primary questions: • Who am I when I’ve forgotten who I am? • What does it mean to love God and be loved by God when I have forgotten who God is? Offering compassionate and carefully considered theological and pastoral responses to dementia and forgetfulness, Swinton’s Dementia redefines dementia in light of the transformative counter story that is the gospel.
From the award-winning journalist and author, a lyrical, raw and humane investigation of dementia that explores both the journeys of the people who live with the condition and those of their loved ones After a diagnosis of dementia, Nicci Gerrard’s father, John, continued to live life on his own terms, alongside the disease. But when an isolating hospital stay precipitated a dramatic turn for the worse, Gerrard, an award-winning journalist and author, recognized that it was not just the disease, but misguided protocol and harmful practices that cause such pain at the end of life. Gerrard was inspired to seek a better course for all who suffer because of the disease. The Last Ocean is Gerrard’s investigation into what dementia does to both the person who lives with the condition and to their caregivers. Dementia is now one of the leading causes of death in the West, and this necessary book will offer both comfort and a map to those walking through it. While she begins with her father’s long slip into forgetting, Gerrard expands to examine dementia writ large. Gerrard gives raw but literary shape both to the unimaginable loss of one’s own faculties, as well as to the pain of their loved ones. Her lens is unflinching, but Gerrard honors her subjects and finds the beauty and the humanity in their seemingly diminished states. In so doing, she examines the philosophy of what it means to have a self, as well as how we can offer dignity and peace to those who suffer with this terrible disease. Not only will it aid those walking with dementia patients, The Last Ocean will prompt all of us to think on the nature of a life well lived.
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.
