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An understudied aspect of the HIV/AIDS epidemic is the creation of hundreds of thousands of grandparent-headed households that have become home to children bereft of one or both of their parents. Such "skip-generation parenting" presents a host of challenges to the families involved and the social programs designed to assist them. Despite this unprecedented caregiving responsibility, older surrogate parents remain relatively invisible, hidden in the shadows of HIV care and the demands of raising a child. The primary goal of Invisible Caregivers is to generate, support, and guide program and policy initiatives designed to meet the needs of elder surrogates and their families. Most social service programs are not able to identify the needs of older surrogates, often because these surrogate parents in HIV-infected families are reluctant to make their needs known for fear of social stigma or possible reductions of benefits. Multiple systemic barriers to case management and other services also frustrate attempts to bring available resources to elder caregivers. These barriers include professional ignorance or denial that HIV affects surrogates, eligibility restrictions through CARE, limited funding and age restriction on OAA, and a fragmented health and human service system. Because the issues facing elder caregivers are many and varied, this collection covers a host of issues: community health, aging, HIV services, child welfare, education, public policy, and mental health.
How can caregivers fulfill their role as a caregiver without losing themselves in the process? Fulfilling the role of family caregiver is hard work, even if chosen willingly as an act of love to another. While the emotional, physical, and spiritual toll of caregiving is well documented, the high level of self-love and self-care required within the caregiver to successfully put the needs of others first without self-destructing is not. Caregiving can be a rewarding experience for all involved, but the stress of being a caregiver can lead to burnout and exhaustion and, in some cases, financial peril IF an Aging Plan is not in place. Consequently, the stress involved in caregiving causes caregivers to put themselves and their well-being in the background and focus on their needs last. Contributing to the level of stress is the fact that many caregivers are financially contributing to their aging loved ones' needs while also caring for that loved one. All this ongoing self-sacrifice causes a phenomenon known as compassion fatigue, leading caregivers to become the "invisible patient." In The Invisible Patient, senior care advisor and caregiver advocate Annalee Kruger teaches caretakers how to appreciate the blessings of being a caregiver while also looking after themselves. It is not a luxury for caregivers to practice strong self-care -- it is a necessity. Caregiving can be a positive experience IF families better understand aging, understand the disease their loved one has, learn how to improve family communication, and have an Aging Plan. The Invisible Patient provides inspiration, encouragement, and step-by-step guidance to ease the caregiving journey. Kruger leaves no stone unturned, providing personal anecdotes and scenarios about the caregiving process, and includes numerous references and resources in this guide to caring for the caregiver.
This collection covers a variety of issues facing elder caregivers: community health, aging, HIV services, child welfare, education, public policy, and mental health.
The story of one woman’s struggle to care for her seriously ill husband—and a revealing look at the role unpaid family caregivers play in a society that fails to provide them with structural support. Already Toast shows how all-consuming caregiving can be, how difficult it is to find support, and how the social and literary narratives that have long locked women into providing emotional labor also keep them in unpaid caregiving roles. When Kate Washington and her husband, Brad, learned that he had cancer, they were a young couple: professionals with ascending careers, parents to two small children. Brad’s diagnosis stripped those identities away: he became a patient and she his caregiver. Brad’s cancer quickly turned aggressive, necessitating a stem-cell transplant that triggered a massive infection, robbing him of his eyesight and nearly of his life. Kate acted as his full-time aide to keep him alive, coordinating his treatments, making doctors’ appointments, calling insurance companies, filling dozens of prescriptions, cleaning commodes, administering IV drugs. She became so burned out that, when she took an online quiz on caregiver self-care, her result cheerily declared: “You’re already toast!” Through it all, she felt profoundly alone, but, as she later learned, she was in fact one of millions: an invisible army of family caregivers working every day in America, their unpaid labor keeping our troubled healthcare system afloat. Because our culture both romanticizes and erases the realities of care work, few caregivers have shared their stories publicly. As the baby-boom generation ages, the number of family caregivers will continue to grow. Readable, relatable, timely, and often raw, Already Toast—with its clear call for paying and supporting family caregivers—is a crucial intervention in that conversation, bringing together personal experience with deep research to give voice to those tasked with the overlooked, vital work of caring for the seriously ill.
Dealing with narratives of vulnerable populations, this book looks at how they deal with dimensions of their social life, especially in regards to health. It reflects the socio-political ecologies like public hostility and stereotyping, neglect of their unique health needs, their courage to overcome adversity, and the love of family and healthcare providers in mitigating their problems. American society likes to give the impression that it is listening to the plight of vulnerable populations, but the stories in this volume prove otherwise.
At the Heart of Work and Family presents original research on work and family by scholars who engage and build on the conceptual framework developed by well-known sociologist Arlie Russell Hochschild. These concepts, such as "the second shift," "the economy of gratitude," "emotion work," "feeling rules," "gender strategies," and "the time bind," are basic to sociology and have shaped both popular discussions and academic study. The common thread in these essays covering the gender division of housework, childcare networks, families in the global economy, and children of consumers is the incorporation of emotion, feelings, and meaning into the study of working families. These examinations, like Hochschild's own work, connect micro-level interaction to larger social and economic forces and illustrate the continued relevance of linking economic relations to emotional ones for understanding contemporary work-family life.
Stacey draws on observations of and interviews with aides working in Ohio and California to explore the physical and emotional labor associated with the care of others.
Parents who care for children with special needs, particularly those whose children have multiple disabilities or intellectual delays, are pioneers in home health care and caregiving, yet their experience and expertise are rarely recognized. This book collects parent narratives, personal experience, and academic research to portray the lives of parent caregivers, looking at both the trials and the triumphs inherent in raising a child with special needs. Parents raising children with special needs often must devote all of their resources, both tangible and spiritual, to providing care long into their offspring's lives. Their experience exceeds the usual parameters of parenting. This book examines all of the facets of their parenting role, the care they provide, challenges they face, and questions many assumptions. It presents parents as neither emotional wrecks nor overburdened saints, but as moral individuals struggling to find their own way through relatively unexplored territory. This book begins to recognize the moral consequences of providing long-term care for a child with complex needs. Using a virtue ethic framework isolates the various tasks involved, and evaluates the moral demands placed on the parent attempting to perform them. On their journey to provide for their child the best life possible, parents must alter their own lives and attitudes, and become the sort of person who can perform the necessary caregiving. Raising a child with special needs demands from the parent a reassessment of their personal and social lives. Some of the consequences, such as the presumed emotional and physical burden of constant attentiveness and the numerous unexpected responsibilities, have been reported previously. But the need for competence, which drives an acquisition of medical knowledge, has not previously been analyzed, nor has there been recognition of the enormous moral task of encouraging identity formation in a child with intellectual delays or disabilities. For a child who cannot attain independence, parents must continue to provide care and support into an uncertain future.
Family caregiving affects millions of Americans every day, in all walks of life. At least 17.7 million individuals in the United States are caregivers of an older adult with a health or functional limitation. The nation's family caregivers provide the lion's share of long-term care for our older adult population. They are also central to older adults' access to and receipt of health care and community-based social services. Yet the need to recognize and support caregivers is among the least appreciated challenges facing the aging U.S. population. Families Caring for an Aging America examines the prevalence and nature of family caregiving of older adults and the available evidence on the effectiveness of programs, supports, and other interventions designed to support family caregivers. This report also assesses and recommends policies to address the needs of family caregivers and to minimize the barriers that they encounter in trying to meet the needs of older adults.
Saying that political and social oppression is a deeply unjust and widespread condition of life is not a terribly controversial statement. Likewise, theorists of justice frequently consider our obligation to not turn a blind eye to oppression. But what is our culpability in the endurance of oppression? In this book, Mara Marin complicates the primary ways in which we make sense of human and political relationships and our obligations within them. Rather than thinking of relationships in terms of our intentions, Marin thinks of them as open-ended and subject to ongoing commitments. Commitments create open-ended expectations and vulnerabilities on the part of others, and therefore also obligations. By this rationale, our actions sustain oppressive or productive structures in virtue of their cumulative effects, not the intentions of the actors.When we violate our obligations we oppress others. Over the chapters of her book, Marin applies her model of commitment to caregivers, marriage, and bargaining power between labor and employers, and examines three types of social relations: political-legal relations, intimate relations of care, and work relations. By linking habitual action to obligation, Marin argues that we should see our responsibilities within such relationships as political and as creating norms for behavior over time. Commitment both points to the support our actions give to oppressive structures and to the ways in which our actions can weaken the same structures. Connected by Commitment examines our obligations to transform structures of oppression and offers commitment as a model for solidarity across race, gender, and class.