Websites for Caregivers
There are hundreds of websites for caregivers, some have very good resources, forums, chat rooms or message boards. Some are strong in one area but not in another. So we’ve distilled the list to find some of the best. New websites pop up everyday so don’t feel that you should be confined to this list, once you get the hang of it you can explore and you will be able to tell which ones will best serve your needs.
Caregiving
http://www.agis.com/default.aspx – Wow, what a great site – so glad we discovered it! Look at the checklists and caregiver kit but also many other excellent pages worth exploring.
http://www.nextstepincare.org/ – Next Step in Care provides easy-to-use guides to help family caregivers and health care providers work closely together to plan and implement safe and smooth transitions for chronically or seriously ill patients.
http://www.caregiving.com – Good discussion groups, blogs and support for caregivers
http://www.enhancedmoments.com – Jolene Brackey’s site, especially good are the handouts that she has on her services page
http://caregiver.org/ – Family Caregiver Alliance in SF, lots of information but you have to dig around and explore
http://www.caregiving.org/ – policy and information – National Alliance for Caregiving
http://nfcacares.org/ – good all around non-profit site but again, you have to dig
http://americanheart.org/presenter.jhtml?identifier=3039829 – excellent, has an online journal and other good resources
http://www.nlm.nih.gov/medlineplus/caregivers.html – factual, a good resource, you can sign up for email newsletters on any health related topic
http://www.caring.com – comprehensive, somewhat commercial
http://www.caregiverstress.com – also a bit commercial but user friendly
http://www.caregiver.com/ – good, friendly site, has newsletter
http://caregivershome.com/ – sponsored by a publisher with a newsletter…it has an “ask an expert” section
http://familycaregiving101.org/ – good all around site with message board
http://www.thefamilycaregiver.org – see NFCA site above
http://www.growthhouse.org – comprehensive death and dying resource
http://www.spiritualityandpractice.com/ – very interesting, lots of information and approaches to spirituality
http://www.womenshealth.gov/faq/caregiver-stress.cfm – good page about stress
http://www.strengthforcaring.com – connecting caregivers
http://www.dshs.wa.gov/pdf/Publications/22-277.pdf – Family Caregiver Handbook, worth downloading!
www.carolodell.wordpress.com – Carol O’Dell’s site, worth a look she has written a lot of interesting material
http://www.nia.nih.gov/HealthInformation/Publications/ExerciseGuide/ – a free online book about exercise – very well done, easy to read.
http://www.netofcare.org/content/your_needs/spiritual_needs.asp – this is a nice discussion of spirituality and caregiving that links to a good site about caregiving
Complementary & Holistic Therapies
National Center for Complementary and Alternative Medicine – Excellent database for Complementary Therapies
Art Therapy on the Web – good connections for the artist in all of us.
Holistic Nurses Association – “the heart of nursing, the science of holism,” they have a yearly conference that promotes holistic practices for caregivers
Legal Issues etc…
Aging with Dignity – Find out about FIVE WISHES: America’s most popular advance directive
Dying Well – Ira Byock’s homepage, very informative
Americans for Better Care of the Dying – a non-profit public charity dedicated to social, professional, and policy reform aimed to improve the care system for patients with serious illness, and their families. A very important site, check out 20 things that an internist could do to improve the quality of a patients end of life experience (under public policy link).
Bereavement
ADEC – Association for Death Education and Counseling – excellent resource base per bereavement, newsletter and conference information
Living With Loss Magazine – a support group in print and a complete grief resource center, the links page will give you a complete bereavement index
Beyond Indigo – changing the way you feel about grief and loss
Crisis, Grief & Healing – this page is meant to be a place men and women can chat or browse to understand and honor the many different paths to heal strong emotions.
Hospice, Nursing & Palliative Care
http://www.aahpm.org – American Academy for Hospice and Palliative Medicine this is the comprehensive site for palliative and hospice care,
http://www.abcd-caring.org/ – Americans for Better Care of the Dying is a non-profit public charity dedicated to social, professional, and policy reform aimed to improve the care system for patients with serious illness, and their families. A very important site, check out 20 things that an internist could do to improve the quality of a patients end of life experience (under public policy link).
http://www.ahna.org – American Holistic Nurses Assn. “the heart of nursing, the science of holism,” yearly conference that promotes holistic practices for caregivers
http://www.americanhospice.org/ – The American Hospice Foundation
The Center to Advance Palliative Care (CAPC) is dedicated to increasing the availability of quality palliative care services in hospitals and other health care settings for people with life-threatening illnesses, their families, and caregivers..
http://www.dyingwell.com – Ira Byock’s homepage, good resource
http://www.eapcnet.org/index.html – European Association for Palliative Care
http://www.epec.net/EPEC/Webpages/index.cfm Our mission is to educate all healthcare professionals on the essential clinical competencies in palliative care
Elisabeth Kubler-Ross FoundationThe EKR foundation is dedicated to preserving and promoting the pioneering life work of Elisabeth Kübler-Ross MD and others committed to compassionate care for those who are near the end of life, those who have died, their loved ones, and their caregivers.
End of Life Nursing Education Consortium Project (ELNEC) is a comprehensive, national education program to improve end-of-life care by nurses, and is funded by a major grant from The Robert Wood Johnson Foundation. Primary project goals are to develop a core of expert nursing educators and to coordinate national nursing education efforts in end-of-life care.
http://www.edc.org/lastacts/ – Innovations in End of Life Care – The purpose of Innovations in End-of-Life Care, an international journal and on-line forum, is to improve the quality of care provided to patients near the end of life and to their families, through the dissemination and critical examination of innovative practices being implemented throughout the world.
http://www.gwish.org/ – The George Washington Institute for Spirituality and Health (GWish) is a university-based organization working toward a more compassionate system of healthcare. “The spiritual dimension cannot be ignored, for it is what makes us human.” Viktor E Frankl
http://www.hospicefoundation.org – HFA- Hospice stories, Journeys Newsletter per issues in the grieving process, Clergy to Clergy section, good links
http://www.hospicenet.org/ – good links on hospice topics
http://www.hospiceworld.org/ – Hospice Education Association
http://www.hpna.org/ – Hospice and Palliative Nurses Assn.
http://www.ncoa.org – National Council on Aging, very comprehensive website, a real must
http://www.nhpco.org – NHPCO- excellent data base for administrators and hospice personnel, hospice directory, conference information, and very good, well-described links
http://www.nlm.nih.gov/medlineplus/hospicecare.html – Medline+ hospice page…excellent!!
http://www.wholenurse.com – Alternative health and good search engine for nursing topics
Spiritual Resources
www.aapc.org – American Association of Pastoral Counselors (AAPC). Represents and sets professional standards for over 3,000 Pastoral Counselors and 100 pastoral counseling centers in North America and around the world.
www.acpe.edu – Association for Clinical Pastoral Education (ACPE). A multicultural, multi-faith organization devoted to improving the quality of ministry and pastoral care offered by spiritual caregivers of all faiths.
http://www.alayainstitute.org/ – The Alaya Institute offers up-to-date resources that support individual growth, spiritual development, End-of-Life education and policy, compassionate service, and access to hospice and grief support.
http://www.bardo.org/ – The Bardo of Death Studies – “Our mission at the Bardo of Death Studies is to assist in the development of discourse, discussion, and archival materials related to personal experiences in Death and Dying. We serve as a friendly net repository for these personal reflections both from the professional and the lay public) and a crossroads resource for others who happen by in search for personal reflection in their own time of need.”
http://www.beyondtheveil.net/ – “A Near Death Experiencer answers questions most people are afraid to ask”
http://www.buddhanet.net/ebooks_g.htm – Here’s one you have to check out for it’s sheer weight in gold – another one of those “read-it-by-Acrobat Reader” sites.
www.cappe.org – Canadian Association for Pastoral Practice and Education (CAPPE). A national multi-faith organization which is committed to the professional education, certification and support of people involved in pastoral care and pastoral counseling.
http://www.cpsp.org/ College of Pastoral Supervision and Psychotherapy, Inc. (CPSP). A theologically-based certifying and accrediting covenant community dedicated to “recovery of soul,” and granting diploma status in pastoral psychotherapy.
http://dyingwell.com/spiritualcarehp0704.htm – Spiritual Care at the End of Life, an excellent article
http://www.holyisland.org Enjoy exploring this site.
www.nacc.org – National Association of Catholic Chaplains (NACC) An association of pastoral ministers who participate in the church´s mission of healing whose mission is to promote professional development and support services for our members.
http://www.OmMaNiPadMeHum.com/ – turn your harddrive into a prayer wheel
http://www.slimeworld.org/lrs – The Labyrinth Readers Society, learn the art of reading from sacred texts for those who are in need or dying.
http://www.spcare.org The aim of the Spiritual Care Program is to demonstrate practical ways in which the compassion and wisdom of the Buddhist teachings can help those facing illness or death, their families, and medical caregivers.
http://www.urbandharma.org/ – Website of Kusala Bhikshu and friends, plenty of information here about Buddhism – very clearly presented and practical
http://www.worldprayers.org/index.html – The World Prayer Collective, excellent site!!
http://www.zenhospice.org – good workshops
http://en.wikipedia.org/wiki/Ars_moriendi – excellent discussion of Ars Moriendi
Your website is a great resource. THANK YOU very much.
We appreciate your feedback and are working to get even more links and resources on these pages! Please send us your spiritual care, hospice and caregiving events and websites for listing.