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.

“A practical, highly informative, and sympathetic guide.”
—The Washington Post

Most of us will become a caregiver at some point in our lives. And we will assume this role for the most personal reason imaginable: wanting to help someone we love. But we may not know where to start, and we may be afraid of losing ourselves in this daunting task.

Former first lady Rosalynn Carter, a longtime advocate for caregivers and mental health, knows firsthand the challenges of this labor of love. Drawing upon her own experiences and those of hundreds of others whose stories she gathered over many decades, Mrs. Carter offers reassuring, practical advice to any caregiver who has faced stress, anxiety, or loneliness.

Helping Yourself Help Others, reissued here with a new foreword, is as relevant as ever. Long before the COVID-19 pandemic inspired national conversations about the vast undervaluing of unpaid caregiving, the dangers of burnout, and the merits of self-care for relief, Rosalynn Carter was shining a light on these matters and everything else that caregivers confront. Filled with empathy, this encouraging guide will help you meet a difficult challenge head-on and find fulfillment and empowerment in your caregiving role.

Just Care is Akemi Nishida’s thoughtful examination of care injustice and social justice enabled through care. The current neoliberal political economy has turned care into a business opportunity for the healthcare industrial complex and a mechanism of social oppression and control. Nishida analyzes the challenges people negotiate whether they are situated as caregivers, receivers, or both. Also illuminated is how people with disabilities come together to assemble community care collectives and bed activism (resistance and visions emerging from the space of bed) to reimagine care as a key element for social change.

The structure of care, Nishida writes, is deeply embedded in and embodies the cruel social order—based on disability, race, gender, migration status, and wealth—that determines who survives or deteriorates. Simultaneously, many marginalized communities treat care as the foundation of activism. Using interviews, focus groups, and participant observation with care workers and people with disabilities, Just Care looks into lives unfolding in the assemblage of Medicaid long-term care programs, community-based care collectives, and bed activism. Just Care identifies what care does, and asks: How can we activate care justice or just care where people feel cared affirmatively and care being used for the wellbeing of community and for just world making?

Most Americans—even those with significant disability—want to live in their homes and communities. Unpaid family members or friends often work as “informal” caregivers, helping those who need assistance— and many feel they have no option but to serve. In contrast, paid personal assistance services workers (PAS) provide a lifeline to those consumers with complex needs and limited social networks. However, there is a crisis looming in the increasing needs for paid PAS and the limited available PAS workforce.

Making Their Days Happen explores disability, health, and civil rights, along with relevant federal and state labor policies related to personal assistance services. Lisa Iezzoni addresses the legal context of paid PAS as well as financing mechanisms for obtaining home-based personal assistance. She also draws upon interviews she conducted with paid PAS consumers and PAS workers to explore PAS experiences and their perspectives about their work. 

Offering recommendations for improving future experiences of PAS consumers and providers, Iezzoni emphasizes that people with disabilities want to be a part of society, and PAS workers who do this low-wage work find satisfaction in helping them achieve their goals.

As many as 30,000 African Americans have sickle cell disease (SCD). Though the political activism of the 1960s and a major 1970s health campaign spurred demands for testing, treatment, and education programs, little attention has been given to how families cope with SCD. This first study to give SCD a social, economic, and cultural context documents the daily lives of families living with this threatening illness. Specifically, Shirley A. Hill examines how low-income African American mothers with children suffering from this hereditary, incurable, and chronically painful disease, react to the diagnosis and manage their family's health care.The 23 mostly single mothers Hill studies survive in an inner-city world of social inequality. Despite limited means, they actively participate, create, and define the social world they live in, their reality shaped by day-to-day caregiving. These women overcome obstacles by utilizing such viable alternatives as sharing child care with relatives within established kinship networks.Highlighting the role of class, race, and gender in the illness experience, Hill interprets how these women reject, redefine, or modify the objective scientific facts about SCD. She acknowledges and explains the relevance of child-bearing and motherhood to African American women's identity, revealing how the revelation of the SCD trait or the diagnosis of one child often does not affect a woman's interpretation of her reproductive rights.