Stories of Illness and Healing: Women Write Their Bodies (edited by Sayantani DasGupta & Marsha Hurst)

Stories of Illness and Healing is the first collection to place the voices of women experiencing illness alongside analytical writing from prominent scholars in the field of narrative medicine. The collection includes a variety of women’s illness narratives―poetry, essays, short fiction, short drama, analyses, and transcribed oral testimonies―as well as traditional analytic essays about themes and issues raised by the narratives. Stories of Illness and Healing bridges the artificial divide between women’s lives and scholarship in gender, health, and medicine.

The Illness Narratives: Suffering, Healing, and the Human Condition, by Arthur Kleinman

From one of America's most celebrated psychiatrists, the book that has taught generations of healers why healing the sick is about more than just diagnosing their illness.

The Wounded Storyteller: Body, Illness and Ethics, by Arthur W. Frank

Drawing on the work of authors such as Oliver Sacks, Anatole Broyard, Norman Cousins, and Audre Lorde, as well as from people he met during the years he spent among different illness groups, Frank recounts a stirring collection of illness stories, ranging from the well-known—Gilda Radner's battle with ovarian cancer—to the private testimonials of people with cancer, chronic fatigue syndrome, and disabilities. Their stories are more than accounts of personal suffering: they abound with moral choices and point to a social ethic. This book has reached a large and diverse readership including the ill, medical professionals, and scholars of literary theory.

Being Mortal: Medicine and What Matters in the End, by Atul Gawande

In Being Mortal, bestselling author Atul Gawande tackles the hardest challenge of his profession: how medicine can not only improve life but also the process of its ending. Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.

Stories Matter: The Role of Narrative in Medical Ethics (edited by Rita Charon & Martha Montello)

The doctor patient relationship starts with a story. Doctors' notes, a patient's chart, the recommendations of ethics committees and insurance justifications all hinge on written and verbal narrative interaction. The practice of narrative profoundly affects decision making, patient health and treatment and the everyday practice of medicine. In this edited collection, the contributors provide conceptual foundations, practical guidelines and theoretical considerations central to the practice of narrative ethics.

Storms of the Inland Sea: Poems of Alzheimer’s and Dementia Caregiving (edited by Margaret Stawowy and Jim Cokas)

Poets Margaret Stawowy and Jim Cokas both experienced a personal metamorphosis while caring for a parent with dementia. While answering a higher calling to care for someone with grace, forbearance, and love, the reality is that such commitment is often accompanied by burnout, financial worries, loneliness, loss of loved ones as we once knew them, and hard choices. Despite the difficulty of the situation, caregivers must learn to weather the practical and emotional storms that are sure to occur. Stawowy and Cokas chose to curate this literary collection, wishing they had had poems such as these to carry them through their difficult experience. The result of their efforts is a powerful and insightful book that can help future caregivers navigate the uncharted and unpredictable seas of caring for patients with dementia.

National Alliance for Caregivers Resources

The National Alliance for Caregiving is a non-profit coalition of national organizations who share a vision of a society that values, supports and empowers family caregivers to thrive at home, work and life. 

Resource page for caregivers includes: Various general resources, Alzheimer’s & Dementia caregiving, Cancer caregiver resources, Caregiving for persons with disabilities, and Rare disease resources.

Click here for resources.

Family Caregiver Alliance (FCA) Resources

FCA provides services to family caregivers of adults with physical and cognitive impairments, such as Parkinson’s, stroke, Alzheimer’s and other types of dementia. Services include assessment, care planning, direct care skills, wellness programs, respite services, and legal/financial consultation vouchers. 

Click here for caregiver resources.

Click here for Caregiver Resource Centers in California.

Online Mayo Clinic Caregivers Support Group and Discussion Forum

A Mayo Clinic forum of caregivers support groups and discussions.

Click here for Website/Forum. 

Caregiver Resource from the Lanier Law Firm

A compilation of resources for caregivers, including those caring for individuals with mesothelioma cancer diagnosis.

We do not endorse the law firm, but the resources on this page include practical and actionable tips for caregivers, including mental and emotional support, help with daily tasks, and general self-care techniques. This resource begins by focusing on mesothelioma, but it goes on to focus on improving the health and experience of caregivers.​

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Click here for the website.