A SCHOLARLY BOOK REPOSITORY
Whether recounting the home birth of her second child, encounters with cougars, the fraught dynamics of mother-daughter relationships, the destructive power of wildfires, or the community bonds challenged by a tragic suicide, Easter’s writing is firmly grounded in place. She takes readers deep into the heart of a still-wild Oregon, perilous yet rich with natural beauty.
Written from one woman’s perspective as a mother, wife, and friend, All the Leavings is ultimately a book about love—for the child who faces a health crisis, for the friend dying of AIDS, for the one entangled by addiction who then disappears. Long after the final page is turned, it will resonate with readers interested in essays, memoir, alternative lifestyles, and the literature of the West.
In Zambia, due to the rise of tuberculosis and the closely connected HIV epidemic, a large number of children have experienced the illness or death of at least one parent. Children as Caregivers examines how well intentioned practitioners fail to realize that children take on active caregiving roles when their guardians become seriously ill and demonstrates why understanding children’s care is crucial for global health policy.
Using ethnographic methods, and listening to the voices of the young as well as adults, Jean Hunleth makes the caregiving work of children visible. She shows how children actively seek to “get closer” to ill guardians by providing good care. Both children and ill adults define good care as attentiveness of the young to adults’ physical needs, the ability to carry out treatment and medication programs in the home, and above all, the need to maintain physical closeness and proximity. Children understand that losing their guardians will not only be emotionally devastating, but that such loss is likely to set them adrift in Zambian society, where education and advancement depend on maintaining familial, reciprocal relationships.
View a gallery of images from the book (https://www.flickr.com/photos/childrenascaregivers)
Download the open access ebook.
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.
Using the broader concept of elicitation, Seo analyzes the social encounters and forces that shape caregivers. These dynamics challenge dichotomies of subjugation and resistance, consent and coercion, and dependence and autonomy. The intimate and moving stories at the core of Eliciting Care from patients and providers draw attention to a broader, critically important phenomenon at the hospital level. Seo's poignant ethnography engages with feminist theory on the ethics of care, and in so doing, makes a significant contribution to emerging work in the field of health policy and politics.
Boyer and Shapiro provide Nevada-specific information\--medical, legal, and financial\--on the wide range of problems that arise during the elder years. Case studies show how a typical family copes with troubles such as failing health or financial cares and what options they have. This guide will help any Nevada resident plan for their own senior years and take care of aging parents, spouses, and other loved ones.
A Few Months to Live describes what dying is like from the perspectives of nine terminally ill individuals and their caregivers. Documenting a unique study of end-of-life experiences that included detailed conversations in home care settings, the book focuses on how participants lived their daily lives, understood their illnesses, coped with symptoms-especially pain-and searched for meaning or spiritual growth in their final months of life. The accounts are presented largely in the participants' own words, illuminating both the medical and non-medical challenges that arose from the time each learned the "bad news" through their final days of life and memorial services.
Describing the nationwide crisis that surrounds end-of-life care, the authors contend that informal caregiving by relatives and close friends is an enormous and too-often invisible resource that deserves close and public attention. By incorporating not only the ill person's but also the family's perspective, they portray the nine participants in the contexts of their daily lives and relationships rather than simply as patients. Addressing such issues as palliative care, quality of life, financial hardship, grief and loss, and communications with medical personnel, the authors identify how families, professionals, and communities can respond to the challenges of terminal illness and the need to confront life's end.
The United States faces a growing crisis in care. The number of people needing care is growing while the ranks of traditional caregivers have shrunk. The status of care workers is a critical concern.
Evelyn Nakano Glenn offers an innovative interpretation of care labor in the United States by tracing the roots of inequity along two interconnected strands: unpaid caring within the family; and slavery, indenture, and other forms of coerced labor. By bringing both into the same analytic framework, she provides a convincing explanation of the devaluation of care work and the exclusion of both unpaid and paid care workers from critical rights such as minimum wage, retirement benefits, and workers' compensation. Glenn reveals how assumptions about gender, family, home, civilization, and citizenship have shaped the development of care labor and been incorporated into law and social policies. She exposes the underlying systems of control that have resulted in women—especially immigrants and women of color—performing a disproportionate share of caring labor. Finally, she examines strategies for improving the situation of unpaid family caregivers and paid home healthcare workers.
This important and timely book illuminates the source of contradictions between American beliefs about the value and importance of caring in a good society and the exploitation and devalued status of those who actually do the caring.
Queers and trans people in the 1980s and early ‘90s were dying of AIDS and the government failed to care. Lovers, strangers, artists, and community activists came together take care of each other in the face of state violence. In revisiting these histories alongside ongoing queer and trans movements, this book uncovers how early HIV care-giving narratives actually shape how we continue to understand our genders and our disabilities. The queer and trans care-giving kinships that formed in response to HIV continue to inspire how we have sex and build chosen families in the present. In unearthing HIV community newsletters, media, zines, porn, literature, and even vampires, Forget Burial bridges early HIV care-giving activisms with contemporary disability movements. In refusing to bury the legacies of long-term survivors and of those we have lost, this book brings early HIV kinships together with ongoing movements for queer and trans body self-determination.
The image of the female caregiver holding a midnight vigil at the bedside of a sick relative is so firmly rooted in our collective imagination we might assume that such caregiving would have attracted the scrutiny of numerous historians. As Emily Abel demonstrates in this groundbreaking study of caregiving in America across class and ethnic divides and over the course of ninety years, this has hardly been the case.
While caring for sick and disabled family members was commonplace for women in nineteenth- and early-twentieth-century America, that caregiving, the caregivers' experience of it, and the medical profession's reaction to it took diverse and sometimes unexpected forms. A complex series of historical changes, Abel shows, has profoundly altered the content and cultural meaning of care. Hearts of Wisdom is an immersion into that "world of care." Drawing on antebellum slave narratives, white farm women's diaries, and public health records, Abel puts together a multifaceted picture of what caregiving meant to American women--and what it cost them--from the pre-Civil War years to the brink of America's entry into the Second World War. She shows that caregiving offered women an arena in which experience could be parlayed into expertise, while at the same time the revolution in bacteriology and the transformation of the formal health care system were weakening women's claim to that expertise.
Hoffman became central to Riegle’s caregiving when he asked her to be his health-care proxy, and although she willingly chose to do this, she explores her conflicting feelings about herself in this role and about her involvement with Riegle and his grueling struggle with hospitalization, illness, and, finally, death. She tells of the waves of grief that echoed throughout her life, awakening memories of other losses, entering her dreams and fantasies, and altering her relationships with friends, family, and even total strangers.
Hoffman’s memoir gives voice to the psychological and emotional havoc AIDS creates for those in the difficult role of caring for the terminally ill and it gives recognition to the role that lesbians continue to play in the AIDS emergency. A foreword by Urvashi Vaid, former executive director of the National Gay and Lesbian Task Force, offers a meditation on the politics of AIDS and the role of family in the lives of lesbians and gay men.
There are fundamental tasks common to every society: children have to be raised, homes need to be cleaned, meals need to be prepared, and people who are elderly, ill, or disabled need care. Day in, day out, these responsibilities can involve both monotonous drudgery and untold rewards for those performing them, whether they are family members, friends, or paid workers. These are jobs that cannot be outsourced, because they involve the most intimate spaces of our everyday lives--our homes, our bodies, and our families.
Mignon Duffy uses a historical and comparative approach to examine and critique the entire twentieth-century history of paid care work--including health care, education and child care, and social services--drawing on an in-depth analysis of U.S. Census data as well as a range of occupational histories. Making Care Count focuses on change and continuity in the social organization along with cultural construction of the labor of care and its relationship to gender, racial-ethnic, and class inequalities. Debunking popular understandings of how we came to be in a "care crisis," this book stands apart as an historical quantitative study in a literature crowded with contemporary, qualitative studies, proposing well-developed policy approaches that grow out of the theoretical and empirical arguments.
In their devotion to the well-being of others, caregivers routinely put their own well-being last and can unintentionally burn themselves out physically, emotionally, and spiritually. Their self-neglect, paired alongside a deep desire to help others, has the potential to stir up feelings of anger and resentment, leading to a sense of guilt and shame. They often believe that if they were to grant themselves any rest or grace, they would be at risk of failing in their duty.
In The Soul of the Helper, Dr. Holly K. Oxhandler shows caregivers and fellow helpers a more self-compassionate way to cope with their overwhelming responsibilities and to attend to their own needs, particularly when it comes to their mental health and spiritual journey. She invites them to pause and realize that if they let their personal resources run dry, they cannot possibly care for others as fully as they wish. In fact, their efforts are likely to cause more harm than good.
With a background in spiritually-integrated mental health, Dr. Oxhandler teaches helpers a seven-step process to slow down and reconnect with the stillness within themselves. It is in this space of stillness that Oxhandler guides helpers to reconnect with the “sacred spark” within their soul. By allowing themselves to enter that stillness, caregivers will recognize that they, too, are worthy of care. And with that realization, they will see anew the sacred spark that dwells inside everyone else, especially within those they’re helping.
As a social worker, researcher, and person of faith, Dr. Oxhandler writes in a warm and welcoming style, shares many relatable stories, and widens her scope to include believers of all faiths and spiritual traditions. Her book is for caregivers everywhere who sense the sacred spark within them saying, in effect: “Come to me, all you who are weary and burdened, and I will give you rest.”
With today's cumbersome insurance procedures, government regulations, endless paperwork, and concerns about malpractice rates, many health care professionals are asking: "Why am I doing this? Am I making a difference to my patients? Is there a better way—and if so, what is it?" In this book, Carson and Koenig examine the state of the health care system with the goal of providing healthcare professionals and caregivers the inspiration and practical tools to reclaim their sense of purpose.
The book begins with an evaluation of the current system from the perspective of the spiritual vision that initially motivated and nourished many caregivers. The authors then pose a vision of a health care system that supports and nurtures the spirituality of patients and their families, of which some elements already exist.
An overview is provided on the preparation necessary for health care professionals to offer spiritual care when there are major implications—for people with chronic illnesses, psychiatric issues, devastating injuries, and those preparing for surgery, facing death, and those living with chronic pain. Also explored are ways that health professionals and caregivers can maintain their own spiritual health even as they work to bring about healing, comfort, and solace to others.
Woven throughout the book are the personal narratives of physicians, nurses, chaplains, health care educators, community resource workers, administrators, therapists, and psychologists—all from a wide range of religious traditions. Their examples inspire and assist professionals in renewing the spiritual focus of health care.
At a time when studies suggest the average American woman spends seventeen years caring for children and eighteen years caring for aging parents, Julia T. Wood examines how culture creates and sustains our definitions of caring, determines who cares along gender lines, and assigns the diminished value that caring has in our society.
Wood argues that America’s expanding need for caring is currently being met at an unacceptably high cost to caregivers. It is time, she believes, to examine caregiving roles and the personal, political, and social issues that surround the question of who cares. Caring must be recognized and promoted as an activity that commands the respect and participation of all members of our society—men and women alike.
Only by implementing changes in the basic fabric of American culture, affecting both the structure and the policies of our society and government, can we, Wood concludes, carve out a system of caring that will recognize caring as everyone’s responsibility.
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.
READERS
Browse our collection.
PUBLISHERS
See BiblioVault's publisher services.
STUDENT SERVICES
Files for college accessibility offices.
RECENTLY PUBLISHED
UChicago Accessibility Resources
home | accessibility | search | about | contact us
BiblioVault ® 2001 - 2024
The University of Chicago Press