Organizations and Government Agencies
These are generally non-profit organizations that provide information and advocacy
AARP – American Association of Retired People. Link to an extensive section on their web site on grief and loss. Lots of other great resources so spend some time and look around.
Aging with Dignity (Five Wishes) Aging with Dignity is a national non-profit organization with a mission to affirm and safeguard the human dignity of individuals as they age and to promote better care for those near the end of life. The life and work of Mother Teresa of Calcutta served as the inspirational foundation of Aging with Dignity.
Alzheimer’s Association 24 hour help-line: 800-272-3900
Americans for Better Care of the Dying Founded in 1997, Americans for Better Care of the Dying (ABCD) is dedicated to ensuring that all Americans can count on good end of life care.
California CPA Foundation At “Dollars and Sense Workshops” they have a great resource: “Making Sense of Funeral Costs and Arrangements” an excellent two page flyer that summarizes best advice on funeral planning.
Caregiver Action Network Inspiration, perspective and advice for you from family caregivers of loved ones with Alzheimer’s
Caring Connections Affiliated with National Hospice and Palliative Care Organization. This extensive site has lots of information relating to “end-of-Life’ and hospice issues.
Centers for Medicare and Medicade Services; Download “Medicare Hospice Benefits”
Children’s Hospice International “CHI’s ultimate goal is to so ingrain the hospice concept into pediatrics that it isn’t considered a separate specialty, rather, an integral part of health care for children and adolescents.”
Compassion & Choices is the leading nonprofit organization committed to helping everyone have the best death possible. We offer free consultation, planning resources, referrals and guidance, and across the nation we work to protect and expand options at the end of life.
The Compassionate Friends: Supporting Family after a Child Dies TCF has about 660 chapters serving all 50 states plus Washington D.C., Puerto Rico, and Guam offer friendship, understanding, and hope to bereaved parents, siblings, grandparents, and other family members during the natural grieving process after a child has died. There is a Wilmington Chapter that meets monthly. Meeting information can be found on their Facebook page: Compassionate Friends, Wilmington, NC – Cape Fear Chapter
Consumer Consortium on Assisted Living CCAL was founded in 1995 as the only national assisted living consumer organization. Recognized by the IRS as a 501 (c) 3 tax-exempt organization, CCAL became the nationally recognized voice of consumers of assisted living.
Death with Dignity National Center The mission of the Death with Dignity National Center is to promote Death with Dignity laws based on our model legislation, the Oregon Death with Dignity Act, both to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care.
Donate Life America Donate Life America is a 501(c)3 not-for-profit alliance of national organizations and state teams across the United States committed to increasing organ, eye and tissue donation. Donate Life America manages and promotes the national brand for donation, Donate Life, and assists Donate Life State Teams and national partners in facilitating high-performing donor registries; developing and executing effective multi-media donor education programs; and motivating the American public to register now as organ, eye and tissue donors.
The Dougy Center, The National Center for Grieving Children and Families The Dougy Center provides a safe place for children, teens, young adults and their families who are grieving a death to share their experiences. They do this through peer support groups, education, and training
Eden Alternative The Eden Alternative® is an international, non-profit 501(c)3 organization dedicated to creating quality of life for Elders and their care partners, wherever they may live. Through education, consultation, and outreach, we offer person-directed principles and practices that support the unique needs of different living environments, ranging from the nursing home to the neighborhood street.
Elisabeth Kubler-Ross Foundation The Elisabeth Kubler-Ross Foundation is a volunteer-based organization inspired by the life of psychiatrist, humanitarian and hospice pioneer, Dr. Elisabeth Kubler-Ross.
Family Caregiver Alliance/National Center on CaregivingFCA is first and foremost a public voice for caregivers. Founded in the late 1970s, we were the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home.
Federal Trade Commission The Funeral Rule
Friends Health Connection What began in 1988 as a one-to-one support group for those facing medical issues has grown into a thriving national network of health and wellness services.
Funeral Consumer’s Alliance Funeral Consumers Alliance is a nonprofit organization dedicated to protecting a consumer’s right to choose a meaningful, dignified, affordable funeral.
Green Burial Council We believe end-of-life rituals are meant to let us honor the dead, heal the living and invite in the divine. We believe burial is “green” only when it furthers legitimate environmental aims such as protecting worker health, reducing carbon emissions, conserving natural resources, and preserving habitat. We believe the field of funeral service needs to embrace a new ethic for new era.
GriefNet GriefNet.org is an Internet community of persons dealing with grief, death, and major loss.
Growth House, Inc. provides education about life-threatening illness and end of life care. Our primary mission is to improve the quality of compassionate care for people who are dying through public education and global professional collaboration.
Hastings Center Addresses ethical issues in health, medicine, and the environment. Great downloadable report “Improving End of Life Care: Why Has it Been So Difficult.”
Healing the Spirit LifeNet Health established a Donor Family Services program in 1990 as a critical part of its mission. Our goal is to provide support services to grieving donor families to help them on their journey to healing.
Hospice Foundation of America The mission of Hospice Foundation of America is to provide leadership in the development and application of hospice and its philosophy of care with the goal of enhancing the U.S. health care system and the role of hospice within it.
Kara: Grief Support for Children, Teens, Families and Adults Kara’s mission is to provide grief support for children, teens, families and adults. Our vision is to see people of all ages compassionately supported on their journey through grief so they can move toward renewed hope and meaning.
Kaiser Foundation – Medicare “Since we began in 1991, our goal has been to build an institution that plays a special role as a trusted source of information in a health care world dominated by vested interests. That institution-building process continues today.” – Drew Altman, Ph.D. President and CEO
KidsAid A site by kids for grief support and peer support.
Leading Age LeadingAge is an association of 6,000 not-for-profit organizations dedicated to making America a better place to grow old.
Medicare A federal government website managed by the Centers for Medicare & Medicaid Services
Medicare Rights Center The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives.
Mesothelioma Guide Guide is your trusted ally in the fight against asbestos-related cancer. We provide up-to-date information about living with mesothelioma, top doctors, treatment options, and more.
National Adult Day Services Association The National Adult Day Services Association (NADSA) is the leading voice of the rapidly growing adult day services (ADS) industry and the national focal point for ADS providers.
National Alliance for Caregiving The National Alliance for Caregiving is a non-profit coalition of national organizations focusing on advancing family caregiving through research, innovation and advocacy. Alliance members include grassroots organizations, professional associations, service organizations, disease-specific organizations, government agencies, and corporations.
National Alliance for Grieving Children The National Alliance for Grieving Children promotes awareness of the needs of children and teens grieving a death and provides education and resources for anyone who wants to support them… Because all grieving children deserve a chance to heal.
National Association for Home Care and Hospice The National Association for Home Care & Hospice (NAHC) is the largest and most respected professional association representing the interests of chronically ill, disabled, and dying Americans of all ages and the caregivers who provide them with in-home health and hospice services.
National Caregivers Library Extensive collection of forms, check lists, and links.
National Center for Assisted Living The National Center for Assisted Living (NCAL) is the assisted living voice of the American Health Care Association (AHCA). NCAL is dedicated to serving the needs of the assisted living community through national advocacy, education, networking, professional development, and quality initiatives.
National Consumer’s Voice for Quality Long Term Care The Consumer Voice is the outgrowth of work ﬁrst achieved by advocates working for Ralph Nader and later for the National Gray Panthers. Elma Holder, NCCNHR founder, was working with The Long-Term Care Action Project of the Gray Panthers when she organized a group meeting of advocates from across the country to attend a nursing home industry conference in Washington, DC. At that meeting, representatives of 12 citizen action groups spoke collectively to the industry about the need for serious reform in nursing home conditions.
National Family Caregivers Association FCA is first and foremost a public voice for caregivers. Founded in the late 1970s, we were the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care for loved ones at home. We illuminate the caregivers’ daily challenges to better the lives of caregivers nationally, provide them the assistance they need and deserve, and champion their cause.
National Hospice ad Palliative Care Organization/End of Life Care Resources The National Hospice and Palliative Care Organization (NHPCO) exists to promote the mission, vision and standards of the Hospice and Palliative Care community, promote compassionate and high quality care for the terminally ill and their families among the general public and professions; act as a resource serving the people involved in, committed to, and providing service within the same mission, vision and standards of care;provide educational programs and technical assistance;influence health program and public policies relative to end of life care and the needs of the terminally ill and their families.
National Patient Advocates Foundation National Patient Advocate Foundation is a national non-profit organization providing the patient voice in improving access to, and reimbursement for, high-quality healthcare through regulatory and legislative reform at the state and federal levels.
National Respite Network The mission of the ARCH National Respite Network and Resource Center is to assist and promote the development of quality respite and crisis care programs in the United States; to help families locate respite and crisis care services in their communities; and to serve as a strong voice for respite in all forums.
National Institutes of Health NIH’s mission is to seek fundamental knowledge about the nature and behavior of living systems and the application of that knowledge to enhance health, lengthen life, and reduce illness and disability.
National Institute on Aging NIA, one of the 27 Institutes and Centers of NIH, leads the federal government in conducting and supporting research on aging and the health and well-being of older people. The Institute seeks to understand the nature of aging and the aging process, and diseases and conditions associated with growing older, in order to extend the healthy, active years of life.
National Volunteer Caregiving Network Theirmission is to promote volunteer caregiving through the advocacy, support, and development of local programs.
Nursing Home Compare (from US govt.) Nursing Home Compare allows consumers to compare information about nursing homes. It contains quality of care information on every Medicare and Medicaid-certified nursing home in the country, including over 15,000 nationwide.
Physician Orders for Life-Sustaining Treatment The National POLST Paradigm is an approach to end-of-life planning based on conversations between patients, loved ones, and health care professionals designed to ensure that seriously ill or frail patients can choose the treatments they want or do not want and that their wishes are documented and honored.
Pioneer Network Pioneer Network was formed in 1997 by a small group of prominent professionals in long-term care to advocate for person-directed care. This group called for a radical change in the culture of aging so that when our grandparents, parents — and ultimately ourselves — go to a nursing home or other community-based setting it is to thrive, not to decline.
President’s Council on Biethics (2005) Transcripts and final reports include “Taking Care: Ethical Caregiving in our Aging Society.”
Retirement Research Foundaiton The Retirement Research Foundation’s mission is to improve the quality of life for our nation’s elders. RRF is one of the nation’s first private foundations devoted exclusively to aging and retirement issues.
Rosalynn Carter Institute An advocacy, education, research, and service unit of Georgia Southwestern State University.
Supportive Care Coalition As a national coalition of Catholic Health Care organizations, we believe that palliative care is a hallmark of Catholic health care, intrinsic to our healing mission.
United Network of Organ Sharing Mission: To advance organ availability and transplantation by uniting and supporting its communities for the benefit of patients through education, technology and policy development.
Well Spouse Association Providing peer support and education about the special challenges and unique issues facing “well” spouses every day.
WidowNet Established in 1995, it is the first online information and self-help resource for, and by, widows and widowers. Topics covered include grief, bereavement, recovery, and other information helpful to people, of all ages, religious backgrounds and sexual orientations, who have suffered the death of a spouse or life partner.
Booklets and Pamphlets free from the Internet
Talking With Your Doctor Nice brochure from the National Institute on Aging.
So Far Away: Twenty Questions and Answers About Long-Distance Caregiving From the National Institute on Aging.
Medicare Hospice Benefits Official US Government handbook.
Commercial Web Sites
.Coms, and .Nets. Generally associated with profit making entities
A Place For Mom Through our compassionate Senior Living Advisers and online resources, we equip you with the knowledge you need to make informed decisions and feel less alone as you face the many challenges of caring for your aging loved ones.
Access-Able Travel Providing Access Information and Resources to the Mature and Travelers with Disabilities
Aging Solutions Our company has been helping seniors and their adult children for 17 years, placing us at the forefront of the rapidly growing geriatric care industry— and usually ahead of the curve. We have developed deep professional resources throughout the state over the years, and have watched the ebb and flow of public policy as it relates to elder-care issues.
American Academy of Estate Planning Attorneys The American Academy of Estate Planning Attorneys is the premier national organization promoting excellence in estate planning by providing its exclusive membership of attorneys with up-to-date research, educational materials, and other vital practice management techniques.
CaregiverStress.com Home Instead Senior Care strives to help you care for your senior loved one through helpful caregiver resources.
Center of Loss and Transition Dr. Alan Wolfelt, founded the Center for Loss more than 20 years ago to compassionately support both mourners, by walking with them in their unique life journeys, and professional and lay caregivers, by serving as an educational resource and professional forum. Includes “The Mourner’s Bill of Rights.”
Crossings – Home Death Care Information CROSSINGS is a founding organization of a gentle but radical movement in the US that stands for the healing power of caring for our own departed. We serve the dead. We serve the families of the dead. We serve love. We serve the Earth. And we believe that no less than the healing of our society is at stake as we decide how our dead are cared for.
Elderweb Research site for professionals and family members looking for information on aging, eldercare, and long term care, including information on legal, financial, medical, and housing issues, policy, research, and statistics.
Enable Mart Enablemart is a world leader in Assistive Technology for those with blindness, low vision, hearing loss, learning disorders and other disabilities. We have been supporting the special needs community for more than a decade by providing all the most demanded learning curriculum, augmentative devices, large key and large print keyboards, Braille displays, alternative input devices, switches and amplified phones.
Funeral Help Program The FHP was created to give consumers a source of information from someone not trying to sell them something. We have devoted the past 15 years to assisting families in understanding the decisions required and their options at each step, via our toll-free line, email, seminars and public forums. We can help those needing assistance to find funds for funerals (though we do not have the funding to assist ourselves) and try to educate the consumer on all things funereal.
Funeralwise.com “Everything you need to know about funerals.”
Give Forward Create a fundraiser for medical expenses funeral expenses and other end-of-life needs.
National Advanced Illness Coordinated Care Caring for a loved one at the end of his or her life is a difficult process. Learn how to arrange for advanced illness care here.
New Lifestyles New LifeStyles will be “The Source for Seniors”, providing comprehensive, quality information on senior residences and care options. This information will be available, free to all that need it. We will lead the market by maximizing quality and advertising exposure for our partners.
Obituary Guide This website has tips and ideas for those who need to write an obituary for a friend or family member, or who wish to write their own obituary. The aim is to help you write an obituary that is accurate, lively, and memorable.
Retirement Living Information Center RetirementLiving.com, operated by the Retirement Living Information Center, is a convenient, easy-to-use resource designed to assist individuals in planning and making decisions about their retirement. The information offered is of particular value when deciding whether or not to move, and if so, finding the right location, lifestyle and housing opportunity.
Strength For Caring Johnson & Johnson is expanding our commitment to caregivers by working with AARP to offer a wide range of valuable, expert information and the ability to connect with other caregivers. Johnson & Johnson and AARP are dedicated to improving caregiving resources for over 42 million family caregivers who provide support for older loved ones every day.
Today’s Caregiver Magazine Caregiver Media Group is a leading provider of information, support and guidance for family and professional caregivers. Founded in 1995, we produce Today’s Caregiver magazine, the first national magazine dedicated to caregivers
Web MD WebMD provides valuable health information, tools for managing your health, and support to those who seek information.
Places you can make a will online – Note that they are all .coms
LawDepot They say “Free Legal Documents, Forms and Contracts” but I’m not so sure about the “free” part.
Find Legal Forms High quality legal documents don’t have to come with a high price. We are committed to providing attorney-prepared, up-to-date forms at a fraction of the price an attorney would charge.
LegalZoom Our founding vision was for an easy-to-use, online service that helped people create their own legal documents. We brought together some of the best minds in the legal and technological fields to make this vision a reality. The result is LegalZoom, the leading, nationally recognized legal brand for small business and consumers in the United States.