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We live in an age in which dying, and knowledge about dying, have moved from the realm of cultural inheritance to that of institutional management. The decision to die at home, or to take on the responsibility of caring for a dying person, is thus a courageous act of human reclamation. But because the dying in our culture have been largely sequestered into hospitals and nursing homes, it is necessary that terminally ill individuals who would do otherwise, and those who care for them, contemplate and engage with the process of dying as a learning experience. Of course the re-personalization of dying means that the experience, for each person, is itself the primary teacher. That said, we can glean helpful lessons from the experiences of others.
The following websites address topics that may be of interest to people with terminal illness.
A Comprehensive Guide
BJ Miller, MD, a hospice and palliative medicine physician and former director of the Zen Hospice in San Francisco, has recently published A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death.
Miller and co-author Shoshana Berger have created an ‘all encompassing action plan for the end of life’. Ira Byock, MD, Founder and Chief Medical Director at the Institute for Human Caring says: “When it comes to the final journey, we are all beginners. Navigating the complexities of serious illness (and ageing) requires grace and grit. With elegant simplicity and tender, earthy honesty, this beginner’s guide explains how to prepare, what possible routes you might take, mis-turns to avoid and the beauty you might see along the way.”
For more information on BJ Miller, view his TedTalk. Or listen to a recent interview on FreshAir (December 3, 2019).
National Hospice and Palliative Care Organization, nhpco.org
Threshold Choir: https://thresholdchoir.org/ The Threshold Choir sings gently at the thresholds of life in over 200 communities.
Support for the dying:
When terminal illness affects a loved one, it isn’t always easy to know how to react. Find out how to offer support and deal with grief. From the Mayo Clinic: Terminal Illness: Supporting a terminally ill loved one.
This New York Times article explains the common end-of-life symptoms. From the New York Times: The Symptoms of Dying.
Support for family caregivers:
The Family Caregiver Alliance provides support, information, and resources for family caregivers. The new FCA CareJourney online portal provides information, support and resources for family caregivers of adults with chronic physical or cognitive conditions such as Alzheimer’s, stroke, Parkinson’s, and other illnesses.
Support for Eldercare services:
Elder Impact provides advice and resources to ease stress during the later years of life.
The Aging Parents and Eldercare website provides information and support groups for those caring for aging parents.
The U.S. Department of Health and Human Services’ Administration on Aging provides an Eldercare Locator site that helps locate services and resources for older adults, their families, and their caregivers.
The Caregiver Stress and Burnout: Tips for Regaining Your Energy, Optimism, and Hope article provides insights into the signs and symptoms of caregiver burnout, along with resources and tips for restorative approaches to caregiving.
The U.S. Office on Women’s Health (an agency of the U.S. Department of Human Health Services) provides a Caregiver Stress Fact Sheet that covers commonly asked questions about caregiving and special stressors for women.
Being the primary caregiver for a person with mesothelioma is not an easy task. If a loved one or family member has been diagnosed with mesothelioma, and you are the person who is their strongest source of support, it will be important for you to take care of not only the patient battling the cancer, but yourself as well.