National Resources

Aging:

Aging with Dignity

Our mission is to help you and your family plan and receive the care you deserve. Something is terribly wrong: The majority of Americans want to die at home surrounded by family and friends, but most end up dying in the hospital or nursing home, cared for by strangers. Half of Americans die in pain that could have been treated. Sick people have come to fear losing their dignity or burdening their families more than they fear death. And this is all happening in a country that is meant to prize the rights of individuals and champion respect for personal wishes. The non-profit Aging with Dignity was established because you and your family deserve better. We provide you with the practical information, advice and legal tools you need to ensure your wishes and those of your loved ones will be respected. By helping you improve your own quality of care, we can bring about dramatic change, one person at a time. The Five Wishes document helps you express how you want to be treated if you are seriously ill and unable to speak for yourself. It is unique among all other living will and health agent forms because it looks to all of a person’s needs: medical, personal, emotional and spiritual. Five Wishes also encourages discussing your wishes with your family and physician.

www.agingwithdignity.org

888-5-WISHES (594-7437)

Eldercare Locator

The Eldercare Locator is a free public service that connects older people and their families to valuable information on services and resources for senior citizens through state and local agencies as well as community-based organizations. The Eldercare Locator is a public service of the U.S. Administration on Aging administered by the National Association of Area Agencies on Aging.

www.eldercare.gov

800-677-1116

The Friendship Line

Feeling isolated or lonely? Call the friendship line 24 hours toll free, a kinder help line for those in crisis.

800-971-0016

General Information on Hospice & End-of-life care:

American Hospice Foundation
Even though the foundation closed in 2014, their website continues to offer information on programs that serve the needs of terminally ill and grieving individuals of all ages.

www.hospicefoundation.org

800-854-3402

Caring Bridge
A free website that helps loved ones share information and support throughout a patient’s significant health challenge.

www.caringbridge.org

Caring Connections
A program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer and community engagement initiative to improve care at the end of life.

https://caringconnection.org

Growth House

Provides education about life-threatening illness and end of life care. Primary mission is to improve the quality of compassionate care for people who are dying, through public education and global professional collaboration. Gives you access to the Internet’s most comprehensive collection of reviewed resources for end-of-life care.

www.growthhouse.org

Hospice Foundation of America
Provides 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.

www.hospicefoundation.org

202-457-5811

Hospice Net
Provides information and support to patients and families facing life-threatening illnesses.

www.hospicenet.org

International Association for Hospice and Palliative Care
Advancing hospice and palliative care programs, education, research, and favorable policies around the world.

https://hospicecare.com

866-374-2472

National Hospice and Palliative Care Organization
Supports the National Hospice and Palliative Care Organization’s quality and research initiatives; hospice/palliative care provider education activities; consumer engagement and caregiver services; and the FHSSA Impact Fund.

https://www.nhpco.org

703-837-1500

End-of-life planning:

The Conversation Project

Dedicated to helping people talk about their wishes for end-of-life care.

www.theconversationproject.org

Honoring Choices Pacific Northwest

The Honoring Choices Pacific Northwest offers a website that is a comprehensive portal of resources from communities across the state. Our goal is to inspire adults of all ages to create their personal end-of-life care plans and connect people to the tools they need to get started. We also provide resources to guide people through sharing those plans with their loved ones and health care teams.

www.honoringchoicespnw.org

MyDirectives®

MyDirectives® is the first completely digital emergency, critical and advance care planning platform. Recognized by the U.S. Department of Health and Human Services, MyDirectives allows individuals to easily, quickly and securely download their electronic healthcare records, MyDirectives is also the only advance care planning platform to receive meaningful use certification from HHS. MyDirectives MOBILE™ is found exclusively in the Apple App Store® and lets consumers place critical emergency health information in front of the lock-screen on the iPhone in conjunction with Apple Health.

www.mydirectives.com

Caring for a Loved One:

Family Caregiver Alliance

Supports and sustains the important work of families nationwide caring for adult loved ones with chronic, disabling health conditions.

https://www.caregiver.org/

Barbara Karnes, RN

End of life education materials for families and professionals

https://www.bkbooks.com 

Pathways

Education and Consultation in End of Life Care

http://pathwayseol.com

Elders Helpers

http://elderhelpers.org (the blog especially is interesting)

Dementia and Alzheimer’s:

Alzheimer’s Association
Mission: To eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Has newsletter by email or printed copy.

www.alz.org

24/7 Helpline 800-272-3900

Elder Care Online

Goal is to provide information, education and support to families caring for aging loved ones, especially those coping with Alzheimer’s Disease and related dementia.

www.ec-online.net

Children’s Hospice care:

Children’s Hospice International
CHI provides education, training and technical assistance to those who care for children with life-threatening conditions and their families.

https://www.chionline.org

703-684-0330

Grieving for a Loved One:

Compassionate Friends
Assists families toward the positive resolution of grief following the death of a child of any age and provides information to help others be supportive.

https://www.compassionatefriends.org

630-990-0010

The Dougy Center
Provides support in a safe place where children, teens, young adults, and their families grieving a death can share their experiences. Supports individuals and organizations seeking to assist children in grief.

www.dougy.org

866-775-5683

Center for Loss and Life Transition

Led by grief counselor and educator Dr. Alan Wolfelt, the Center for Loss and Life Transition is an organization dedicated to helping people who are grieving and those who care for them with resources and understanding.

https://www.centerforloss.com

Other Links of Interest:

Keep checking our VHOCC Facebook page as we post articles and videos of interest to hospice, palliative care, aging, caregiving, etc.

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