For general information on serious illness and available supportive programs, you may want to contact the following national and regional organizations.
National and Regional Resources | Caregiver Resources |
Government Resources | End-of-Life Resources
National and Regional Resources
| Organization | Phone | Web site |
| American Cancer Society | 1.800.227.2345 | www.cancer.org |
| American Gastroenterological Association | 1.301.654.2055 | www.gastro.org |
| American Heart Association | 1.800.242-8721 | www.americanheart.org |
| American Lung Association | 1.800.548-8252 | www.lungusa.org |
| National Multiple Sclerosis Society | 1.800.344.4867 | www.nationalmssociety.org |
| ALS (Lou Gehrig's) Association | 1.800.782.4747 | www.alsa.org |
| Alzheimer's Association | 1.800.272.3900 | www.alz.org |
| American Pain Society | 1.847.375.4715 | www.ampainsoc.org |
| Candlelighters Childhood Cancer Foundation | 1.800.366.2223 | www.candlelighters.org |
| Caring Connections / End of life Resources & Info | 1.800.658.8898 | www.caringinfo.org |
| Children's Hospital Medical Center - Palliative Care | 1.206.987.4751 | www.seattlechildrens.org |
| Consoling Communities | 1.206.366.2715 | www.consolingcommunities.com (See the Individual Support Section: Guide for Care and Support during serious illness) |
| National Cancer Institute | 1.800.422.6237 | www.cancer.gov |
| National Hospice and Palliative Care Organization | 1.703.837.1500 | www.nhpco.org |
| Pain Net, Inc. | 1.614.481.5960 | www.painnet.com |
| University of Washington Multidisciplinary Pain Center | 1.206.598.3300 | www.uwmedicine.org/ PatientCare/ PatientCareOverview/ |
Books about Serious Illness
This is just a basic list on some serious illness related topics. You may wish to visit your local library or bookstore for a wider selection. Or refer to the above Internet Resource Section. Many organizations have preferred book lists.
How to Help Children Through a Parent's Serious Illness by Kathleen McCue and Ron Bonn
When Someone Has a Very Serious Illness: Children Can Learn to Cope with Loss and Change by Marge Heegaard
Handbook for Mortals: Guidance for People Facing Serious Illness by Joanne Lynn, Joan Harrold; The Center to Improve Care of the Dying
Caregiver Resources
| Organization | Phone | Web site |
| Caregiver Assistance Network | 513.241.7745 | www.cssdoorway.org |
| Caregiver / Caregiving | 800.829.2734 | www.caregiver.com |
| Caring for your Aging Parent | www.youragingparent.com (Check under 'Topics' for many excellent ‘mini-topics’ on spirituality, information and resources.) | |
| Caring to Help Others (online caregiver training manual) |
www.caringtohelpothers.com | |
| Children of Aging Parents | 800.227.7294 | www.caps4caregivers.org |
| Consoling Communities | 1.206.366.2715 | www.consolingcommunities.com (See the Individual Support Section: Guide for Care and Support during serious illness) |
| ElderCare Online | www.ec-online.net | |
| Family Caregiver Alliance | 800.445.8106 | www.caregiver.org |
| National Alliance for Caregiving | www.caregiving.org | |
| National Family Caregivers Association | 800.896.3650 | www.nfcacares.org |
Books about Caregiving
This is just a beginning list on some caregiving- related topics. Feel free to visit your local library or bookstore for a wider selection.
A Family Caregiver Speaks up: It doesn’t have to be this hard, By Suzanne Mintz
Caring for Your Aging Parents, by Raeann Berman Bernard Shulman
The Complete Eldercare Planner; Second Edition, by Joy Loverde
Coping With Your Difficult Older Parent, by Grace Lebow
A Catholic Guide to Caring for Your Aging Parent, by Monica Dodds. **Highly recommended.** Despite it's title, this book is a helpful, practical guide for persons of any faith background or those who profess no religious preference. It is a wealth of information, check-lists and tips in an easy-to-read format.
6 Years of Grace; Caregiving Episodes with my mother, by Jennifer Sokol. **Highly recommended.** This small book is a jewel - a poignant, practical, highly personal, and spiritual account of a mother/daughter journey into the struggles and blessings of caregiving.
End-Of-Life and Government Resources
| Organization | Phone | Web site |
| Aging With Dignity | 888.5-WISHES (594-7437) | www.agingwithdignity.org |
| Administration on Aging | www.aoa.gov | |
| Americans for Better Care for the Dying | 703.647.8505 | www.abcd-caring.org |
| AgingStats.gov | www.agingstats.gov | |
| Caring Connections | 800.658.8898 | www.caringinfo.org |
| Centers for Disease Control and Prevention | 800.311.3435 | www.cdc.gov |
| Centers for Medicare and Medicaid Services |
877.267.2323 | www.cms.hhs.gov |
| Elders and Families | 202.619.0724 | www.aoa.gov/eldfam/ |
| Federal Trade Commission: Consumer Information Aging Parents and Adult Children Together |
877.FTC-HELP (382-4357) |
www.ftc.gov/bcp/conline/pubs /services/apact/index.html |
| FirstGov for Seniors | 800.FED-INFO (333-4636) |
www.seniors.gov |
| Healthfinder | www.healthfinder.gov | |
| Health.gov | www.health.gov | |
| Health Resources and Services Administration: Division of Facilities Compliance and Recovery | www.hrsa.gov/hillburton/ compliance-recovery.htm |
|
| Hospice Net | www.hospicenet.org | |
| Medicare: The Official U.S. Government Site for People with Medicare | 800-MEDICARE | www.medicare.gov |
| National Cemetery Administration | www.cem.va.gov | |
| National Institute of Mental Health | 866.615.6464 | www.nimh.nih.gov |
| National Institute on Aging | 800-222-2225 | www.nih.gov/nia/ |
| National Institute on Aging | 800-222-2225 | nia.nih.gov/healthinformation/ resourcedirectory.htm/ |
| National Institutes of Health | 301.496.4000 | www.nih.gov |
| National Library of Medicine | 888.FIND-NLM (346-3656) |
www.nlm.nih.gov |
| Social Security Online | 800.772.1213 | www.ssa.gov |
| Supportive Care of the Dying: A Coalition for Compassionate Care | 503.215.5053 | www.careofdying.org |
| U.S. Department of Health and Human Services - Aging | 877.696.6775 | www.dhhs.gov/aging |
| U.S. Department of Veterans Affairs - Benefits | 800.827.1000 | www1.va.gov/health_benefits/ |
| U.S. Environmental Protection Agency: Aging Initiative | 202.564.2188 | www.epa.gov/aging/index.htm |
| U.S. Food and Drug Administration | 888.INFO-FDA (463-6332) |
www.fda.gov |
Special thanks to Monica and Bill Dodds of www.youragingparent.com for help compiling these lists. If the list does not include the information you are seeking, we apologize. Please consider asking your physician or health care provider if they are aware of a more helpful organization for your situation.
End-of-life books
This is just a basic list on some end-of-life topics. You may wish to visit your local library or bookstore for a wider selection. Or refer to the above Internet Resource Section. Many organizations have preferred book lists.
Final Gifts: Understanding the special awareness, needs, and communications of the dying, By Maggie Callanan and Patricia Kelley. ** Highly Recommended.**
The Four Things That Matter Most: A Book About Living, by Ira Byock **Highly Recommended**
Dying Well, By Ira Byock ** Highly Recommended **
The Needs of the Dying: A Guide for Bringing Hope, Comfort, and Love to Life's Final Chapter, by David Kessler
The End-of-Life Handbook: A Compassionate Guide to Connecting with and Caring for a Dying Loved One, by David B. Feldman , Stephen Andrew Lasher Jr., Ira Byock (Foreword)
Grief-Related Internet Resources
For adults and children:
www.griefnet.com
www.goodgriefresources.com
www.griefdigest.com
www.caringinfo.org
www.centeringcorp.com
www.centerforloss.com
www.dougy.org
Grief Resources for Children, Siblings, and Parents
Safe Crossings: www.safecrossings.org. This Seattle nonprofit group has a good web site and a great program which serves children who are grieving or have anticipatory grief.
Compassionate Friends: www.tcf.org.uk (UK site) Click on publications, then leaflets
www.compassionatefriends.org. The Compassionate Friends is one of the best known grief self-help organizations in the world. Known for local support groups led by bereaved parents, The Compassionate Friends organization now helps parents and siblings who have experienced the death of a child or sibling, at any age.
All Kids Grieve: allkidsgrieve.org
Fernside: www.fernside.org
Grief-Related Audio-Resources
Healing the Grieving Heart radio series. ** Highly Recommended.** Many people who are experiencing grief have expressed how helpful it has been for them to listen to these programs via the web -- in the middle of the night, or whenever else they might feel the need for grief-related information and consolation. To check out one of these audio programs, just access the Compassionate Friends (www.compassionatefriends.org ) web site and click on 'Healing the Grieving Heart' for the archived shows.
Books about Grief
This is just a basic list on some grief-related topics. You may wish to visit your local library or bookstore for a wider selection. Or refer to the above Internet Resource Section. Many organizations have preferred book lists.
All Ages
Lifetimes: The beautiful way to explain death to children, by Bryan Mellonie and Robert Ingpen.
Healing A Child’s Grieving Heart: 100 Practical Ideas For Families, Friends, and Caregivers, by Alan Wolfelt, Ph.D. **Very Good, author highly recommended**
Each Little Bird that Sings, by Deborah Wiles; Golden Kite Award. Sweet, poignant novel for people of all ages—though written for pre-teens and teens. **Very Good, highly recommended by Consoling Communities.**
Tear Soup: A child's book for 'children of all ages'. Available in either book or video. By Chuck DeKlyen, Taylor Bills, and Pat Schwiebert.
For Children
Saying Good-bye to Grandma, by Jane Resh Thomas.
The Tenth Good Thing About Barney, by Judith Viorst
Sad Isn’t Bad; A Good-Grief Guidebook for Kids Dealing With Loss, by Michaelene Mundy **Very good little workbook, highly recommended by Consoling Communities**
A Quilt For Elizabeth, by Bennette Tiffault.
For Teenagers
Help For The Hard Times: Getting Through Loss, by Earl Hipp.
For Death of a Mother: Motherless Daughters: The Legacy of Loss, by Hope Edelman
For Death of a child: The Death Of A Child: Reflections For Grieving Parents, by Elaine E. Stillwell . (** Highly Recommended** A very good book on all grief, but most especially the death of a child.)
For Suicide Survivors: After Suicide: a ray of hope for those left behind, by Eleanora Betsy Ross.
