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Resources for Those Looking for Nursing Homes, Hospices, In-Home Hospices, Living Wills, Advance Directives, etc., Or Who Are Facing End-of-Life Challenges
Kenneth S. Pope, Ph.D., ABPP
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I gathered the following resources -- which include searchable online databases, 24-hour helplines, and books -- to help individuals and families in their search for information, services, and facilities.
I hope these resources will be helpful to those who may need nursing homes, home health care, palliative care, hospices, assisted living, continuing care, geriatric care managers, living wills, advanced directives, hospital visitation authorization for unmarried partners, web connections with other family caregivers, and so on.
PLEASE NOTE: 12 other pages on this web site provide resources that some may find helpful. They include:
- Resources for Caregivers: Books, Articles, Chapters & Links to Sites
- Resources for People with Alzheimer's or Other Dementias, for Families, & for Clinicians
- Therapy, Guide, Hearing, and Assistance Animals [on companion web site]
- Assistive Technologies for People with Disabilities [on companion web site
- Parkinson's: Psychological Symptoms & Psychological Interventions--Recent Studies
- Psychological Aspects of Coronary Heart Disease: Recent Studies
- Psychological Interventions for People With Cancer: Therapy & Self-Help--Recent Studies
- Cancer & Exercise: Prevention & Recovery--Recent Studies
- New Resources for Breast Cancer: Treatment Research Articles; Links to Sites; Psychological Aspects; Books
- New Resources for Prostate Cancer: Treatment Research Articles; Links to Sites; Psychological Aspects; Books
- New Resources for Lung Cancer: Treatment Research Articles; Links to Sites; Psychological Aspects; Books
- New Resources for Colon Cancer: Treatment Research Articles; Links to Sites; Psychological Aspects; Books
I hope you find these resources helpful.
Alzheimer's Association: Resources include 24-hour helpline, senior housing finder, care-finder, & library services.
Assisted Living INFO: "online guide for selecting an assisted living facility, retirement community, or other personal care facility anywhere in the United States. Our site is designed to assist you throughout the selection process. We offer tools to help you evaluate a senior's needs, facility selection tips, and our highly-acclaimed, map-based search engine to find a facility near family and friends."
Buddhist Hospice Directory: Listing, descriptions, & links to Buddhist organizations offering hospice and palliative care services.
Canadian Hospice Palliative Care Association: Information and services including an "on-line directory...designed to provide you with information on the availability of hospice palliative care services across Canada. Here you will find a listing of programs and services, their contact information, the population they serve, and where they provide care."
Canadian Virtual Hospice: Information and support for those facing end-of-life issues, for their families and loved ones, for their caregivers, and for professionals. Includes a variety of online discussion groups (e.g., "I am living with a serious illness"; "I care about someone" for connecting with other caregivers; "I am living with loss and grief"), "Ask a professional," and other resources.
Cancer Care: "CancerCare is a national nonprofit organization that provides free, professional support services to anyone affected by cancer: people with cancer, caregivers, children, loved ones, and the bereaved. CancerCare programs – including counseling, education, financial assistance and practical help – are provided by trained oncology social workers and are completely free of charge."
Caregiver: information for family & professional caregivers; includes online listings for each state's Support Groups, Non-Profit Resources, Financial Aid. & Rural Caregiver Resources.
Caregiver Resources: web sites, books, chapters, and articles to provide information, support, and other resources for caregivers and their clinicians.
CaringBridge: "Free, personalized web sites that support and connect loved ones during critical illness.... A CaringBridge website helps keep loved ones informed during difficult times. In return, family and friends give patient and caregiver support through guestbook messages. Every free, personalized CaringBridge website includes: patient care journal to update family and friends; guestbook for messages of love; photo gallery; & free online support for using the service."
Caring Connections: online resources include "a state-specific living will or healthcare power of attorney"
Compassion and Choices: resources include forms for living will and advance directive (for each state) and hospital visitation authorization form for unmarried partners.
A Dying Person's Guide to Dying by Roger Bone, M.D.: "By thinking ahead about what could happen - and about how you will deal with problems if they do happen, you can create a better life and a better quality of life for yourself and for the people who love and care about you. What I have to say is for the person who, like myself, is dying. We, too, need to plan - to think ahead in order to fashion, out of the time remaining, the best of what is possible. As I am dying from cancer..."
Family Caregiver Alliance: "information on care strategies, stress relief, community resources, family issues and hands-on care. Be sure to also visit our Fact Sheet section for a comprehensive collection of family-friendly publications filled with practical information. For more personal assistance, click on 'Ask FCA'. And don’t miss our online Discussion Groups, to keep you connected, 24 hours a day, with other caregivers."
Gilbert Guide: Allows online searching for facilities & services including: (a) assisted living, (b) homecare, (c) continuing care (CCRC), (d) nursing homes, (e) home health care, (f) geriatric care managers, (g) adult day services, and (h) hospices.
Hospice Directory: online searchable database of hospices in Canada and the United States.
Mayo Clinic: Anticipating end-of-life needs of people with Alzheimer's disease: "The challenges of Alzheimer's disease multiply as the end of life approaches. Here are some ways to prepare for the tough choices ahead."
National Cancer Institute: End-of-Life Care: questions and answers - "The following information can help answer some of the questions that many patients, their family members, and caregivers have about the end of life."
National Hospice & Palliative Care Organization: Find a Provider: Allows online searches by city, name, specialization, etc.
National Institute for Jewish Hospice: "A 24 hour toll-free number counsels families, patients and care-givers, and provides locations of hospices, hospitals, health professionals and clergy of all faiths."
Nursing Home Directory: "Whether you are looking for a short rehabilitation stay or long-term residence, this website is designed to help you gather information about U.S. Nursing and Rehab Centers."
Nursing Home INFO: Allows online searching for nursing homes by city, county, state, name, management, or special needs.
Palliative Care Directory of Hospitals: searchable online database "to help you or a loved one locate a hospital in your area that provides a palliative care program. The directory is based upon palliative care programs listed in the 2007 American Hospital Association (AHA) Annual Survey."
Perinatal hospice/palliative care programs and support: online listing and links to hospitals with perinatal hospice/palliative care programs. "As prenatal testing becomes increasingly routine, more parents are learning devastating news before their babies are born. In too many places, the ability to diagnose has raced ahead of the ability to care for these families and their babies. But in a beautiful and practical response, some pioneering hospitals and hospices are starting perinatal hospice or perinatal palliative care programs for families who wish to continue their pregnancies with babies who likely will die before or shortly after birth. A perinatal hospice approach walks with these families on their journey through pregnancy, birth and death, honoring the baby as well as the baby's family. Even in areas without a formal program, parents can create a loving experience for themselves and their baby, and health professionals and family and friends can offer support in the spirit of hospice (see our resources pages)."
U.S. Department of Health & Human Services: Centers for Medicare & Medicaid Services: comprehensive government web site for medicare & medicaid coverage.
U.S. Department of Health & Human Services: Eldercare Locator: "links those who need assistance with state and local area agencies on aging and community-based organizations that serve older adults and their caregivers."
U.S. Health & Human Services Nursing Home Comparison Site: "The primary purpose of this tool is to provide detailed information about the past performance of every Medicare and Medicaid certified nursing home in the country." The site allows you to search by geography (i.e. all homes within a state or county), proximity (within a certain distance of a town or zip code), or name.
Veterans Aid & Attendance Pension Benefit: Guide to using veterans' pension benefit for home care, assisted living, nursing home, etc.
After Diagnosis: Family Caregiving With Hospice Patients. John Bruhn. Springer, 2016.
Ahead of Your Time: A Complete Guide for End-of-Life Planning. Dick Coffin & Sue Coffin. Ahead Of Your Time Publishers, 2007.
American Medical Association Guide to Home Caregiving. American Medical Association. AMA, 2001.
Baby Boomer's Guide to Nursing Home Care. Eric M. Carlson & Katharine Bau Hsiao. Taylor, 2006.
Being Mortal: Medicine and What Matters in the End. Atul Gawande. Metropolitan, 2014.
Being With Dying: Cultivating Compassion And Fearlessness In The Presence Of Death. Joan Halifax. Shambhala Publications, 2008.
Caregiving: Hospice-Proven Techniques for Healing Body and Soul. Douglas C. Smith. Wiley, 1997.
Caring for Your Parents. Hugh Delehanty and Elinor Ginzler. AARP, Sterling Publishing Co., Inc., New York, 2005.
Christian Caregiving: A Way of Life. Kenneth C. Haugk. Augsburg Publishing House. 1984.
Circles of Care: How to Set Up Quality Care for Our Elders in the Comfort of Their Own Homes. Ann Cason & Reeve Lindbergh. Shambhala, 2001.
The Comfort of Home: A Complete Guide for Caregivers. Maria M. Meyer & Paula Derr. CareTrust Publications, 2007.
Complete Eldercare Planner, 2nd Edition. Joy Loverde. Three Rivers Press, 2000.
Communicating at the end of life: Finding magic in the mundane. E. Foster. Lawrence Erlbaum Associates Publishers, 2007.
Death, Dying, and BereavementContemporary Perspectives, Institutions, and Practices. Judith Stillion & Thomas Attig. Springer, 2015.
Decision making near the end-of-life: Issues, developments, and future directions. James L. Werth & Dean Blevins (Eds.) Routledge/Taylor & Francis Group, 2009.
Dying at home: a family guide for caregiving. A. Sankar. Johns Hopkins University Press, 1999.
Eldercare Handbook: Difficult Choices, Compassionate Solutions. Stella Henry & Ann Convery. Collins Living, 2006.
Eldercare 911: The Caregiver's Complete Handbook for Making Decisions. Susan Beerman. Promethius Books, 2002.
Emotional Survival Guide for Caregivers: Looking After Yourself and Your Family While Helping an Aging Parent. Barry Jacobs. Guilford Press, 2006.
End-of-Life Advisor: Personal, Legal, and Medical Considerations for a Peaceful, Dignified Death. Susan Dolan & Audrey R. Vizzard. Kaplan Publishing, 2008.
End-of-life Care and Addiction: A Family Systems Approach. S. Y. Bushfield & B. DeFord. Springer, 2010.
End-of-Life Care for Children and Adults With Intellectual and Developmental Disabilities. Sandra Friedman & David Helm. American Association on Intellectual and Developmental Disabilities, 2010.
End-of-Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One. David B. Feldman, Stephen Andrew Lasher Jr., & Ira Byock. New Harbinger, 2008.
End-of-Life Issues, Grief, and Bereavement: What Clinicians Need to Know. S. H. Qualls & J. E. Kasi-Godley (Eds.). John Wiley, 2011.
Everything You Need to Know About Nursing Homes: The Family's Comprehensive Guide to Either Working with the Institution or Finding Care Alternatives. Charlotte Digregorio. Civetta Press, 2005.
Family Hospice Care: Pre-Planning and Care Guide. Harry van Bommel. Media Futures Institute, 2006.
A Final Farewell: Your Personal Guide to End of Life Issues. Nancy Lawson. Legacy, 2002.
Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. Maggie Callanan & Patricia Kelley. Bantom, 1997.
Final Journeys: A Practical Guide for Bringing Care and Comfort at the End of Life. Maggie Callanan. Bantam, 2009.
Freedom To Choose: How To Make End-of-Life Decisions on Your Own. George Burnell. Baywood, 2008.
Guide to Caregiving in the Final Months of Life. Betsy Murphy & Linda Roberts. T. M. Brown Publishers, 2007.
Helping Professional's Guide to End-of-Life Care: Practical Tools for Emotional, Social, and Spiritual Support for the Dying. A. Strada. New Harbinger, 2013.
Hospice Care for Children (2nd ed.). A. Armstrong-Dailey & S. Zarbock. Oxford University Press, 2001.
Hospice Care at Home: A Guide to Caring for Your Dying Loved One at Home. Starr Calo-oy & Bob Calo-oy. Orchard Publications, 2006.
The Hospice Choice: In Pursuit of a Peaceful Death. by Marcia Lattanzi-Licht, Galen W. Miller, & John J. Mahoney. Fireside, 1998.
The Hospice Companion, 2nd Edition. P. G. Fine & M. Kestenbaum. Oxford University Press, 2012.
Hospice Handbook: A Complete Guide. Larry Beresford & Elisabeth Kubler-Ross. Little, Brown, 1993.
Hospice and Palliative Care: Concepts and Practice, Second Edition. Denice C. Sheehan. Jones and Bartlett, Publishers, 2003.
Hospice and Palliative Care: The Essential Guide, Second Edition. Stephen R. Connor. Routledge, 2009.
Hospice and Palliative Care Formulary USA, 2nd Edition. Robert Twycross and Andrew Wilcock. Palliativedrugs.Com Ltd, 2008.
How to Find Great Senior Housing: A Roadmap for Elders and Those Who Love Them, 2nd Edition. Phyllis Staff. The Best Is Yet.Net Press, 2004.
How We Die: Reflections of Life's Final Chapter. Sherwin B. Nuland. Vintage, 1995.
Infection Control In Home Care and Hospice, 2nd Edition. Emily Rhinehart & Mary McGoldrick Friedman. Jones & Bartlett, 2005.
Insider's Guide to Better Nursing Home Care: 75 Tips You Should Know. Donna M. Reed. Promethius, 2008.
Journey through the Dying Process: Caring for a Loved one at the End of Life. Fairview Health Services. Fairview Press, 2003.
Let Me Decide: What You Need to Know Now about End-Of-Life Care. William Molloy. Penguin Books Canada, 2005.
Living at the End of Life: A Hospice Nurse Addresses the Most Common Questions. Karen Whitley Bell. Sterling Ethos, 2009.
Living Well in a Nursing Home: Everything You & Your Folks Need to Know. Lynn Dickinson, Xenia Vosen, & Severine Biedermann. Hunter House, 2005.
Longing for Nothingness: Resistance, Denial, and the Place of Death in the Nursing Home. Andrew Stein. Jason Aronson, 2010.
Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter. David Kessler. Harper, 2007.
Notes from the Waiting Room: Managing a Loved One's End-of-Life-Hospitalization (includes Choosing End-of-Life Care Without Hospitalization). Bart Windrum. Axiom Action, 2008.
Nursing Homes: The Family's Journey. Peter S. Silin. Johns Hopkins University Press, 2001.
Nursing Home Survival Guide: An Insider's Perspective on Everything from Admission to Discharge. L. Green. CreateSpace, 2012.
On Death and Dying: What the Dying Have to Teach their Doctors, Nurses, Clergy, and their Own Families. Elisabeth Kubler-Ross. Scribner, 1969.
Palliative care: Transforming the care of serious illness. (Robert Wood Johnson Foundation series on health policy) Diane Meier, Stephen Isaacs, & Robert Hughes (Eds). Jossey-Bass, 2010.
Palliative and End of Life Care for Children and Young People: Home, Hospice, Hospital. Anne Grinyer. Wiley-Blackwell, 2012.
Peaceful Dying: The Step-by-step Guide To Preserving Your Dignity, Your Choice, And Your Inner Peace At The End Of Life. Daniel R. Tobin, With & Karen Lindsey. Da Capo Press, 1968.
Peaceful Journey: A Hospice Chaplain's Guide to End-of-Life. Matthew P. Binkewicz. Paramount Market Publishing, 2005.
Providing The Best Care Option For Your Elderly Parents: Everything you need to know about elderly care including homecare, assisted living, nursing home options, hospice, and more! CreateSpace, 2009.
Raising Moms. Rhonda H. Kelley. New Hope Publishers, 2006.
The Senior's Guide to End-of-Life Issues: Advance Directives, Wills, Funerals & Cremations. Rebecca Sharp Colmer & Todd M. Thomas. Eklektika Press, 2006.
Staying in Charge: Practical Plans for the End of Your Life. Karen Orloff Kaplan & Christopher Lukas. Wiley, 2004.
Transitions in Dying and Bereavement: A Psychosocial Guide for Hospice and Palliative Care. Moira Cairns, Marney Thompson, Wendy Wainwright, & Victoria Hospice Society. Health Professions Press, 2003.
When Breath Becomes Air. Paul Kalanithi. Random House, 2016.
When Someone You Love Needs Nursing Home Care: The Complete Guide, 2nd Edition. Robert F. Bornstein, Mary A., Ph.D. Languirand, & Robert Bornstein. Newmarket Press, 2009.