Resources
Click the following headings to view a list of resources regarding the topic specified. Open just the ones you need, or all of them at once.Patient Support
www.mealtrain.com helps friends and family more easily coordinate delivery of meals. It's free, includes a patient preferences section, and even sends out reminders.
www.patientslikeme.com offers connections to support for a wide range of medical conditions.
The following cancer-related sites offer information, articles, and a range of support. Many of these resources can be helpful for noncancer patients also.
www.mercymedical.org provides long-distance charitable medical air transportation to and from specialized medical care.
www.cancercare.org provides free professional help to people with all cancers through counseling, education, as well as referral, and direct financial assistance.
www.cancer.net is the American Society of Clinical Oncology's patient information website.
www.canceradvocacy.org National Coalition for Cancer Survivorship is the oldest survivor-led advocacy organization.
www.thewellnesscommunity.org has centers in most major cities with groups and classes where they provide free emotional support, education, and hope for people with cancer and their loved ones.
Caregiver Support
www.caregiver.org Family Caregiver Alliance offers newsletters, discussion groups, and articles on a wide variety of topics relating to caregiving. Check out their "New to Caregiving" section.
www.caringtoday.com Provides general caregiving advice, offers specific information for a range of diseases, can help you find the resources you need where you live, and offers financial and legal information.
www.archrespite.org National Respite Network and Resource Center provides information on why respite is important for caregivers, and how they can access outside resources.
www.caring.com has a focus on elder care, including resources for outside help, financial and legal matters, home care, caregiver support, and helpful suggestions for patients with Alzheimer's. Covers both general issues, such as caring for the caregiver and medical directives, as well as very specific topics such as what circumstances qualify a veterans widow for benefits.
Area Agency on Aging advocates, plans, coordinates, develops and delivers services for adults aged 60 years and older, persons of any age with HIV/AIDS, adults aged 18 years and older with disabilities and long-term care needs, and family caregivers. An online search will yield the nearest agency in your locale.
Advance Directives
The following websites provide valuable information to help with this difficult and important step.
www.caringinfo.org/PlanningAhead
A booklet, Hard Choices for Loving People, is available on-line at www.hardchoices.com.
Talking About Death Won't Kill You, by Virginia Morris; Workman Publishing Co.
Body Donation
www.sciencecare.com accepts donations from every state in the U.S., except Minnesota and New Jersey. A highly reputable company, they cover all costs and logistics of transporting a body, and will even file a death certificate and return cremated remains to the family at no charge.
Ethical Will
www.everplans.com/articles/ethical-will-worksheet There are many books and websites that address ethical wills. This site offers simple, straightforward suggestions to help you get started.
Make A Wish
Most people have heard of the Make-A-Wish Foundation (www.wish.org) that grants wishes to children with a terminal illness. Foundations granting wishes to adults include:
www.dreamfoundation.com grants final wishes to terminally ill adults over the age of 18. (805) 564-2131
www.foreveryoungseniorwish.org reaches out to residents of nursing homes, assisted living facilities, hospice programs, home-bound individuals and adult day care facilities, regardless of age, to help make their dreams come true. (901) 299-7515
www.reelingandhealing.org hosts fly-fishing retreats for women and men with cancer. Also offers a retreat for family, friends and caregivers once each year. (866) 237-5725
www.secondwind.org A non-profit organization that grants wishes to older adults living in eldercare facilities or in hospice care. (678) 624-0500
Children
Resources for Adults
www.supersibs.org offers advice and resources to parents, teachers and others, to help them know how to support and comfort siblings of young patients.
www.hospicenet.org provides excellent advice on talking about death and helping children cope, as well as offering suggestions to appropriately involve children.
Talking About Death: A Dialogue Between Parent and Child, by Earl A. Grollman; Beacon Press. A guide for parents that features a read-along story and answers to questions that children may ask about death.
When a Parent Has Cancer: A Guide to Caring for Your Children, by Wendy S. Harpham, M.D.; William Morrow Paperbacks. Dr. Harpham is a mother, physician and cancer survivor who knows firsthand the challenges of supporting children while also struggling with serious illness. Included is Becky and the Worry Cup, an illustrated children's book that tells the story of a seven-year-old girl's experiences with her mother's cancer.
Resources for Children
www.supersibs.org has an area called "Sib Spot" that provides direct support to siblings of young patients.
www.cancer.net/.../resources-young-adults-with-cancer is a terrific resource for teens, and their friends.
When Someone You Love Has Cancer: A Guide to Help Kids Cope (Elf-Help Books for Kids) by Alaric Lewis; One Caring Place. Ages 13 and under.
The Fall of Freddie the Leaf: A Story of Life for All Ages by Leo Buscaglia; Slack, Inc. Ages 4 and up.
The Next Place by Warren Hanson; Bantam. Ages 5 and up.
What's Heaven? by Maria Shriver; St. Martins Press. Ages 5 and up.
When Somone Has a Very Serious Illness, by Marge Heegaard; Woodland Press. Ages 9 and up.
When Someone Very Special Dies, by Marge Heegaard; Woodland Press. Ages 9 and up.
Alzheimer's Patients
Both of the following organizations provide education and support for dementia patients and their caregivers, and can help you find additional resources.
www.alz.org Alzheimer's Association
www.nia.nih.gov/Alzheimers The National Institute on Aging
Learning to Speak Alzheimer's: A Groundbreaking Approach for Everyone Dealing with the Disease by Joanne Koenig Coste; Mariner Books.
Loving Someone Who Has Dementia: How to Find Hope While Coping with Stress and Grief By Pauline Boss, PhD; Jossey-Bass.
The 36-Hour Day: A Family Guide to Caring for People with Alzheimer Disease, Other Dementias amd Memory Loss in Later Life by Nancy L. Mace and Peter V. Rabins; Grand Central Life & Style.
Home-Centered After Death Care
The following websites provide practical information, inspiration, and creative suggestions.
This article from the New York Times on home funerals is worth reading: www.nytimes.com/2009/07/21/us/21funeral.html
Funeral and Memorial Planning
www.thefuneralsite.com offers general information, and pricing overview. The library contains a wide range of information on everything from selecting poetry to scattering ashes over the Grand Canyon.
Remembering Well, by Sarah York; Jossey-Bass. A beautiful guide to creating personalized ceremonies, includes text to use in the ceremony, and rituals.
Great Occasions, edited by Carl Seaburg; Skinner House Books. Contains a wide range of poetry and short readings for ceremonies.
In Memorium: A Guide to Modern Funeral and Memorial Services, by Edward Searl; Skinner House Books.
Grief
The following site offers resources and information, as well as online support. For local in-person groups, an online search that includes your locale will likely provide you with a number of choices.
www.healthline.com/.../online-grief-support-groups
There are many helpful books about grief, but here are three I think are particularly helpful:
The Year of Magical Thinking, by Joan Didion, Alfred A. Knopf
A Grief Observed, by C.S. Lewis, Faber and Faber
Send My Roots Rain: A Companion on the Grief Journey, by Kim Langley Paraclete Press