Emily K. Abel

Medicine finally has discovered fatigue. Recent articles about various diseases conclude that fatigue has been underrecognized, underdiagnosed, and undertreated. Scholars in the social sciences and humanities have also ignored the phenomenon. As a result, we know little about what it means to live with this condition, especially given its diverse symptoms and causes. Emily K. Abel offers the first history of fatigue, one that is scrupulously researched but also informed by her own experiences as a cancer survivor. Abel reveals how the limits of medicine and the American cultural emphasis on productivity intersect to stigmatize those with fatigue. Without an agreed-upon approach to confirm the problem through medical diagnosis, it is difficult to convince others that it is real. When fatigue limits our ability to work, our society sees us as burdens or worse. With her engaging and informative style, Abel gives us a synthetic history of fatigue and elucidates how it has been ignored or misunderstood, not only by medical professionals but also by American society as a whole.

An Intimate History of Fatigue

Sick and Tired

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. Table of Contents: Acknowledgments Introduction Part One: 1850-1890 1. "Hot Flannels, Hot Teas, and a Great Deal of Care": Emily Hawley Gillespie and Sarah Gillespie, 1858-1888 2. An Overview of Nineteenth-Century Caregiving 3. "Tried at the Quilting Bees": Con'icts between "Old Ladies" and Aspiring Professionals Part Two: 1890-1940 4. A "Terrible and Exhausting" Struggle: Martha Shaw Farnsworth, 1890-1924 5. "Just as You Direct": Caregiver Translations of Medical Authority 6. Negotiating Public Health Directives: Poor New Yorkers at the Turn of the Century Reviews of this book: This excellent historical review of female caregiving within families as a transformative experience identifies conditions that make this form of human connectedness rewarding and meaningful. --J.E. Thompson, Choice This is a breathtaking work in terms of its depth and its breadth. Emily Abel's research is impressive in its time frame, wide range of topics, and wonderful source material. What she has given us, for the first time, is a full-length study of the female support network, not only for childbirth but for a whole range of health issues. With her pleasing writing style and clear, readable prose, she gives us much more than mere glimpses of anonymous people--she provides the reader with a sense of the texture of human lives. --Susan L. Smith, University of Alberta The reader of Hearts of Wisdom is surprised by the topic and content, but is left with the sense that the most central story of human possibility has been left out of all other history books. The work offers a substantive contribution to history, feminist scholarship, caregiving professions, and informal caregivers. --Patricia Benner, R.N., Ph.D, University of California, San Francisco

American Women Caring for Kin, 1850-1940

Hearts of Wisdom

Explains why there is a crisis in caring for elderly people and how the COVID-19 pandemic exacerbated it Because government policies are based on an ethic of family responsibility, repeated calls to support family members caring for the burgeoning elderly population have gone unanswered. Without publicly funded long-term care services, many family caregivers cannot find relief from obligations that threaten to overwhelm them. The crisis also stems from the plight of direct care workers (nursing home assistants and home health aides), most of whom are women from racially marginalized groups who receive little respect, remuneration, or job security. Drawing on an online support group for people caring for spouses and partners with dementia, Elder Care in Crisis examines the availability and quality of respite care (which provides temporary relief from the burdens of care), the long, tortuous process through which family members decide whether to move spouses and partners to institutions, and the likelihood that caregivers will engage in political action to demand greater public support. When the pandemic began, caregivers watched in horror as nursing homes turned into deathtraps and then locked their doors to visitors. Terrified by the possibility of loved ones in nursing homes contracting the disease or suffering from loneliness, some caregivers brought them home. Others endured the pain of leaving relatives with severe cognitive impairments at the hospital door and the difficulties of sheltering in place with people with dementia who could not understand safety regulations or describe their symptoms. Direct care workers were compelled to accept unsafe conditions or leave the labor force. At the same time, however, the disaster provided an impetus for change and helped activists and scholars develop a vision of a future in which care is central to social life. Elder Care in Crisis exposes the harrowing state of growing old in America, offering concrete solutions and illustrating why they are necessary.

How the Social Safety Net Fails Families

Elder Care in Crisis

Hospices have played a critical role in transforming ideas about death and dying. Viewing death as a natural event, hospices seek to enable people approaching mortality to live as fully and painlessly as possible. Award-winning medical historian Emily K. Abel provides insight into several important issues surrounding the growth of hospice care. Using a unique set of records, Prelude to Hospice expands our understanding of the history of U.S. hospices. Compiled largely by Florence Wald, the founder of the first U.S. hospice, the records provide a detailed account of her experiences studying and caring for dying people and their families in the late 1960s and early 1970s. Although Wald never published a report of her findings, she often presented her material informally. Like many others seeking to found new institutions, she believed she could garner support only by demonstrating that her facility would be superior in every respect to what currently existed. As a result, she generated inflated expectations about what a hospice could accomplish. Wald’s records enable us to glimpse the complexities of the work of tending to dying people.

Florence Wald, Dying People, and Their Families

Prelude to Hospice

Saskia K. Subramanian

2009 Choice Outstanding Academic Title 2009 Association of American University Presses Award for Jacket Design Chemo brain. Fatigue. Chronic pain. Insomnia. Depression. These are just a few of the ongoing, debilitating symptoms that plague some breast-cancer survivors long after their treatments have officially ended. While there are hundreds of books about breast cancer, ranging from practical medical advice to inspirational stories of survivors, what has been missing until now is testimony from the thousands of women who continue to struggle with persistent health problems. After the Cure is a compelling read filled with fascinating portraits of more than seventy women who are living with the aftermath of breast cancer. Emily K. Abel is one of these women. She and her colleague, Saskia K. Subramanian, whose mother died of cancer, interviewed more than seventy breast cancer survivors who have suffered from post-treatment symptoms. Having heard repeatedly that “the problems are all in your head,” many don't know where to turn for help. The doctors who now refuse to validate their symptoms are often the very ones they depended on to provide life-saving treatments. Sometimes family members who provided essential support through months of chemotherapy and radiation don't believe them. Their work lives, already disrupted by both cancer and its treatment, are further undermined by the lingering symptoms. And every symptom serves as a constant reminder of the trauma of diagnosis, the ordeal of treatment, and the specter of recurrence. Most narratives about surviving breast cancer end with the conclusion of chemotherapy and radiation, painting stereotypical portraits of triumphantly healthy survivors, women who not only survive but emerge better and stronger than before. Here, at last, survivors step out of the shadows and speak compellingly about their “real” stories, giving voice to the complicated, often painful realities of life after the cure. This book received funding from the Susan G. Komen Foundation.

The Untold Stories of Breast Cancer Survivors

After the Cure

Margaret K. Nelson

It documents the slow progress of change for many African Americans in the South, explores the still little-known experiences of Black household workers in the suburban North, and reconstructs the textured lives that Mable Jones and the many women like her nevertheless carved out in a system that was and continues to be stacked against them.

Mable Jones, a Black Children's Nurse in a Northern White Household

Limited Choices

Florence Wald, Dying People, and their Families

Professor of Health Services and Women's Studies Emily K Abel

Professor Margaret K Nelson

This work examines the experience of women providing care to children, disabled persons, the chronically ill, and the frail elderly. It differs from most writing about caregiving because it focuses on the providers rather than the care recipients. It looks at the experience of women caregivers in specific settings, exploring what caregiving actually entails and what it means in their lives

Work and Identity in Women's Lives

Circles of Care

What is it like to live with—and love—someone whose death, while delayed, is nevertheless foretold? In Living in Death’s Shadow, Emily K. Abel, an expert on the history of death and dying, examines memoirs written between 1965 and 2014 by family members of people who died from chronic disease. In earlier eras, death generally occurred quickly from acute illnesses, but as chronic disease became the major cause of mortality, many people continued to live with terminal diagnoses for months and even years. Illuminating the excruciatingly painful experience of coping with a family member’s extended fatal illness, Abel analyzes the political, personal, cultural, and medical dimensions of these struggles. The book focuses on three significant developments that transformed the experiences of those dying and their intimates: the passage of Medicare and Medicaid, the growing use of high-tech treatments at the end of life, and the rise of a movement to humanize the care of dying people. It questions the exalted value placed on acceptance of mortality as well as the notion that it is always better to die at home than in an institution. Ultimately, Living in Death’s Shadow emphasizes the need to shift attention from the drama of death to the entire course of a serious chronic disease. The chapters follow a common narrative of life-threatening disease: learning the diagnosis; deciding whether to enroll in a clinical trial; acknowledging or struggling against the limits of medicine; receiving care at home and in a hospital or nursing home; and obtaining palliative and hospice care. Living in Death’s Shadow is essential reading for everyone seeking to understand what it means to live with someone suffering from a chronic, fatal condition, including cancer, AIDS, Alzheimer’s, and heart disease.

Family Experiences of Terminal Care and Irreplaceable Loss

Living in Death’s Shadow

At the turn of the twentieth century, medicine’s imperative to cure disease increasingly took priority over the demand to relieve pain and suffering at the end of life. Filled with heartbreaking stories, The Inevitable Hour demonstrates that professional attention and resources gradually were diverted from dying patients. Emily K. Abel challenges three myths about health care and dying in America. First, that medicine has always sought authority over death and dying; second, that medicine superseded the role of families and spirituality at the end of life; and finally, that only with the advent of the high-tech hospital did an institutional death become dehumanized. Abel shows that hospitals resisted accepting dying patients and often worked hard to move them elsewhere. Poor, terminally ill patients, for example, were shipped from Bellevue Hospital in open boats across the East River to Blackwell’s Island, where they died in hovels, mostly without medical care. Some terminal patients were not forced to leave, yet long before the advent of feeding tubes and respirators, dying in a hospital was a profoundly dehumanizing experience. With technological advances, passage of the Social Security Act, and enactment of Medicare and Medicaid, almshouses slowly disappeared and conditions for dying patients improved—though, as Abel argues, the prejudices and approaches of the past are still with us. The problems that plagued nineteenth-century almshouses can be found in many nursing homes today, where residents often receive substandard treatment. A frank portrayal of the medical care of dying people past and present, The Inevitable Hour helps to explain why a movement to restore dignity to the dying arose in the early 1970s and why its goals have been so difficult to achieve.

A History of Caring for Dying Patients in America

The Inevitable Hour

Living in Death’s Shadow is essential reading for everyone seeking to understand what it means to live with someone suffering from a chronic, fatal condition, including cancer, AIDS, Alzheimer’s, and heart disease.

A frank portrayal of the medical care of dying people past and present, The Inevitable Hour helps to explain why a movement to restore dignity to the dying arose in the early 1970s and why its goals have been so difficult to achieve.

Marjorie Pearson

First Published in 1989. Routledge is an imprint of Taylor & Francis, an informa company.

Emily K. Abel

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