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The following resources are available to all members of our community who deal with issues surrounding death and dying, end-of-life care, grief and bereavement. We use and recommend these websites because of their educational and practical value.
In addition to the resources listed below, Hospice Volunteer Services maintains a lending library of books, CDs, and videos in its Middlebury office, located at 63 Maple St. in the Marble Works District. It is available to all community members.
Local & Vermont
Resources
General Hospice & End-of-Life Issues
Caregiving
Advance Directives
Grief, Loss & Bereavement
Medical/Illness & Pain Management
Cremation, Burial, Funeral & Memorial Services
Complementary Care
Addison
County Home Health & Hospice
PO Box 754, Middlebury, VT 05753
802-388-7259
www.achhh.org
ACHH&H is a nonprofit organization that provides community based professional home care services to families and individuals of all ages, regardless of extent of illness or injury, and includes end-of-life services for terminally ill patients, enabling them to stay in their homes. Professional services include skilled nursing, physical therapy, speech therapy, occupational therapy, medical social work, and nutritional consultation. Additional support services may include home health aide, personal care attendant, and homemaker.
Hospice and Palliative Care Council of Vermont
10 Main Street, Montpelier, VT 05602
802-229-0579
www.hpccv.org
HPCCA is a state wide professional hospice organization that is committed to assuring access to high quality palliative and end-of-life care including caregiver support and bereavement services for all Vermonters. It provides contact information for all Medicare certified hospice programs in Vermont.
Porter Hospital, Inc.
115 Porter Drive, Middlebury, VT 05753,
802-388-4701
www.portermedical.org
Porter Hospital is the Addison County community hospital which provides a continuum of health care services including in-hospital and out-patient services, emergency care, rehabilitation, and long-term care.
United Way of Addison County
2 Court Street, P.O. Box 555, Middlebury, Vermont 05753
802-388-7189
www.unitedwayaddisoncounty.org
UWAC brings together people and resources to address community needs and to encourage community-wide financial support of nonprofit, human service agencies in Addison County. Hospice Volunteer Services is a UW member.
Vermont Respite House
99 Allen Brook Lane, Williston, VT 05495
802-879-0943
Back to topVRH is a state licensed home for terminally ill patients. It is not a hospital nor nursing home, but a home-away-from-home operated under the skilled nursing care of the Visiting Nurse Association. It is a place where terminally ill patients can live the remainder of their days in peace, surrounded by the love of family and friends.
General Hospice & End-of-Life Issues
American
Hospice Foundation
2120 L Street NW, Suite 200, Washington, DC 20037
202-223-0204
www.americanhospice.org
AHF supports programs that serve the needs of terminally ill and grieving individuals of all age. The provide the following services: train school professionals who work with grieving students; educate employers and managers about the needs of grieving employees; create tools to help hospices reach out to their communities; promote improved hospice benefits in managed care organizations; and initiate research on consumer needs and preferences in end-of-life care.
Dying Well/Ira Byock
www.dyingwell.org
Dr. Ira Byock, long time palliative care physician and advocate for improved end-of-life care, and a past president of the American Academy of Hospice and Palliative Medicine, provides answers to FAQ about dying, excellent articles, and referrals to organizations, web sites and books to empower persons with life threatening illness, and their families, to live fully.
Hospice Foundation of America
1621 Connecticut Ave. NW, Suite 300, Washington, DC 20009
800-854-3402
www.hospicefoundation.org
HFA’s programs cover the following areas: professional development, public education and information, research, publications and health policy issues. Among its publications: A Guide to Recalling and Telling Your Life Story, Clergy to Clergy: Ministering to Those Facing Illness, Death and Grief, Journeys (a monthly newsletter for bereaved persons), and educational brochures. HFA sponsors an annual teleconference on Living with Grief.
Hospice Net
www.hospicenet.org
This is a website devoted to practical and very helpful information about the following areas: hospice services, guides for patients and for caregivers, ways to support children, and bereavement issues.
Finding our Way: Living with Dying in America
www.findingourway.net
This national public education initiative focuses on bringing practical information to the American public regarding end of life and its surrounding issues. First published as a 15 part newspaper series, the website contains all of the original articles and more. Topics include Palliative Care, Culture and Diversity, Spirituality and Faith, Last Rites, Caregiving, Nursing Home Care, When a Child is Dying, Violent and Unexpected Deaths, Grief and Loss, Widowhood, Visions for the Future.
National Hospice & Palliative Care Organization
1700 Diagonal Road, Suite 625, Alexandria, Virginia 22314
703-837-1500
www.nhpco.org
Back to topNHPCO is a national organization committed to working for improvement in the quality of hospice and palliative care services and to increase access and integration of palliative and hospice care for individuals and families facing serious illness, death, and grief, by providing a wide range of educational opportunities and resources.
Caregivers
Handbook
www.acsu.buffalo.edu/~drstall/hndbk0.html
Although first published in 1990, this handbook, now available on the internet, is comprehensive and very useful. The topics covered include: Caring for the Caregiver, Personal Care, Nutrition, Medical Aspects of Caregiving, Emotional and Intellectual Well-Being, Legal and Financial Affairs, Liability of Caregiving, Choosing a Residential Care Facility
Caring Road
609-773-0773
www.caringroad.org
This is an on-line caregivers community that provides practical information, personal stories, and the CaringRoad Support Network, which is an internet opportunity for caregivers, for whom it may be hard to leave home, to connect with a group of caregivers with whom to share conversation, questions, concerns and practical help.
Caring Connections
a program of the National Hospice and Palliative Care Organization
1700 Diagonal Rd. Suite 625, Alexandria, VA 22314
703-837-1500
www.caringinfo.org
Back to topThis online resource covers such topics as physical care, services available to assist caregivers, caring for the caregiver, being prepared, providing comfort care, preparing your home, advance care planning, financial planning, and grief.
Five
Wishes
PO Box 1661
Tallahassee, FL 32303-1661
888-5WISHES (594-7437)
www.agingwithdignity.org
The Five Wishes document helps you express how you want to be treated if you are seriously ill or injured and unable to speak for yourself. It lets your family and doctors know: 1) which person you want to make health care decisions for you when you cannot make them, 2) The kind of medical treatment you want or do not want, 3) How comfortable you want to be, 4) How you want people to treat you, and 5) What you want your loved ones to know.
U.S. Living Will Registry
523 Westfield Ave., P.O. Box 2789, Westfield, NJ 07091-2789
800-LIV-WILL (1-800-548-9455)
www.uslivingwillregistry.com
The mission of the U.S. Living Will Registry is to promote the use of advance directives through educational programs, and to make people's health care choices available to their caregivers and families whenever and wherever they are needed, while maintaining the confidentiality of information and documents. Advance directives, organ donor information and emergency contact information are stored electronically and made available to health care providers across the country 24 hours a day through an automated system.
Vermont Ethics Network
64 Main Street, Room 25, Montpelier, VT 05602
802-828-2909
www.vtethicsnetwork.org
Back to topVEN works to increase understanding of ethical issues, values and choices in health and healthcare. A major focus is the creation and distribution of Advance Directive forms which can be downloaded from their website and are accepted throughout Vermont.
American
Association for Retired Persons
www.aarp.org/families/grief_loss
This link, provided through the AARP website, addresses many practical topics including: local and national organizations offering bereavement support, an overview of financial and legal action steps to take when someone dies, survivor's information on claiming Social Security, veterans and employer benefits, documents to collect when someone dies, basic actions to take during the first few months after the death of your loved one, information on funeral arrangements, helping grandchildren deal with grief, normal reactions to loss, understanding the grief process, a guide for the newly widowed (on being alone), sudden or traumatic loss, and ways to remember loved ones who have died.
Dougy Center for Grieving Children and Families
PO Box 86852, Portland, OR 97286
503-775-5683
www.dougy.org
The Dougy Center provides a safe place where children, teens and their families who are grieving a death can share their experiences as they move through their grief process. Principles that guide their programs are: 1) Grief is unique for each individual. 2) The intensity and duration of grief is different for each person. 3) Within each of us is the capacity to heal. 4) Support helps in the grief process. Their website includes help for adults who want to know how to support grieving children, information for schools impacted by death, help for teens, and help for kids. There is a center locator for finding similar children/family grief centers in the US and Canada.
Center for Loss and Life Transition
3735 Broken Bow Road, Fort Collins, CO 80526
970-226-6050
www.centerforloss.com
This educational and training center for bereaved caregivers also publishes books, articles and other resources to help people who are grieving. Particularly helpful is the online Centerpiece Newsletter.
Compassionate Books
7036 State Hwy 80 South, Burnsville, NC 28714
800-970-4220
www.compassionbooks.com
This website provides access to more than 400 books, videos, and audios to help children and adults through serious illness, death and dying, grief, bereavement, and losses of all kinds, including suicide, trauma, and violence.
Compassionate Friends
PO Box 3696, Oak Brook, IL 60522-3696
Toll-free: 877-969-0010
www.compassionatefriends.org
Back to topThis national self-help support organization offers friendship, understanding and hope to bereaved parents, grandparents and siblings. Their mission is to assist families toward the positive resolution of grief following the death of a child of any age and to provide information to others who want to be supportive. As seasoned grievers reach out to the newly bereaved, energy that has been directed inward begins to flow outward and both are helped to heal.
Medical/Illness & Pain Management
Each of the organizations below provides in-depth information about the named topic. Each website provides access to a great deal of information and additional resources and links.
Alzheimer’s Disease information
www.alz.org
American Cancer Society
www.cancer.org
American Pain Foundation
www.painfoundation.org
Cancer pain and care information
www.cancer-pain.org
Dying Process described
www.webmd.com/hw/healthy_seniors/aa148991.asp
Cremation, Burial, Funeral & Memorial Services
Crossings:
Caring for our Own at Death
7108 Holly Ave., Takoma Park, MD 20912
301-523-3033
www.crossings.net
The focus of Crossings is to integrate dying and after-death care into family and community life through education about choices available for after-death care, inspiration through shared experiences, and trainings in after-death care.
US Department of Veteran Affairs
www.cem.va.gov
This website provides information about veteran burial benefits, eligibility and cemetery locations
Cremation info
www.cremationinfo.com
This website provides information about various aspects of cremation including such topics as religious approval of cremation, embalming and cremation, casket or no casket? and options for cremation remains.
Funeral Help Program:
The Consumer’s Guide to Going in Style without Going in Debt
www.funeral-help.com
This website provides information gleaned from the book The Affordable Funeral: Going in Style, Not in Debt, by Dr. R. E. Markin, former director of the Alzheimer's Research Foundation, and based on surveys of over 3,000 funeral homes, casket manufacturers, cemetery associations, and others. The author describes various options for after-death care.
Funeral Consumers Alliance
33 Patchen Road, South Burlington, VT 05403
800-765-0107
www.funerals.org
FCA provides information about a wide range of after-death care topics including up-to-date consumer alerts, legislative watch, caring for your own dead, how to evaluate your funeral provider, on-line book store, and on-line discussion group. Many useful pamphlets can be down-loaded.
Jewish funerals, burials & mourning
410-733-3700
www.jewish-funerals.org
Back to topThis website, published by Kavod v’Nichum and the Jewish Funeral Practices Committee of Greater Washington, provides information and identifies resources about Jewish death and bereavement practice for Chevra Kadisha groups and bereavement committees in synagogues and communities throughout the U.S. and Canada. It covers such topics as Jewish mourning practices, preparing the body, medical ethics and resources.
A number of non-traditional medicine practices have been found to be very helpful at the end of life. These are non-invasive techniques, usually facilitated a trained person, and can bring soothing comfort to hospice patients and family members. These websites provide an introduction to several of these complementary care practices.
General overview of complementary care
(brief descriptions of different techniques)
www.hospiceofmetrodenver.org/Alternative_Therapies.asp
Acupuncture
Vermont Assoc. of Acupuncture & Oriental Medicine
www.vaaom.orgFrom Beth Israel Medical Center www.stoppain.org/pain_medicine/content/treatments/stimulatory.asp
Aromatherapy
National Association for Holistic Aromatherapy
www.naha.org
Energy work
Healing Touch International
www.healingtouchinternational.orgInternational Center for Reiki Traning
www.reiki.org
Expressive arts
Use of music in care of the dying
www.growthhouse.org/musicAmerican Art Therapy Association
www.arttherapy.org
Hypnotherapy
American Psychological Association, pain management www.psychologymatters.org/hypnosis_pain.html
Massage
Back to topChallenges and Rewards of Hospice Massage www.massagemag.com/Magazine/2005/issue116/Hopice.php