Hospice Foundation of America E-Newsletter
July 2004
Hospice Foundation of America E-Newsletter
Volume 4, Issue 7
July 2004
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Message from David Abrams, President
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The recent images of Nancy Reagan and her family attending the funerals and memorials for President Reagan were a poignant reminder about the role that family caregivers play when a loved one is ill or dying. While the Reagan family most certainly had
access to significant resources and support, all family caregivers face on a daily basis the challenges of caring for their loved one while juggling work, children, and even their own illnesses. Hospice has always recognized the family caregiver as an integral member of the caregiving team, and community hospices are great resources for information and support.
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Focus on: Resources for Family Caregivers
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In a foreword to HFA's book on Caregiving and Loss, former First Lady Rosalynn Carter wrote that, "Caring for a loved one is not an endeavor that should be undertaken alone. To offer the best to their loved ones and still stay strong and healthy, family caregivers need to be surrounded by compassionate, responsive assistance from the professionals who work with them. And these professionals must be willing to listen and respond to their needs." The organizations and websites below offer advice and guidance to families and the professionals who work with them.
The Rosalynn Carter Institute for Caregiving promotes the mental health and well-being of individuals, families, and professional caregivers; promulgates effective caregiving practices; builds public awareness of caregiving needs; and advances public and social policies that enhance caring communities. (This link is no longer available.)
Navigating the medical system can be an ongoing challenge for family caregivers. Yet, as hospice has always realized, these caregivers provide critical information about their loved one, and should be considered a vital part of the caregiving team. William Lamers, MD, wrote an excellent article for HFA's book on Caregiving and Loss entitled "What Caregivers Need From Doctors." Read this article and see other resources from HFA's Caregiving initiative.
The National Family Caregivers Association has developed the "Communicating Effectively" program to empower family caregivers by improving their communications skills in the healthcare environment.
NFCA will be conducting regional Train-the-Trainer Conferences for workshop leaders, including a session in Oregon at the end of July and Westchester County, NY session in September. Interested persons should apply on-line at http://www.nfcacares.org or contact John Paul Marosy at 508-854-0431.
The National Family Caregivers Association is a grass roots organization created to educate, support, empower and speak up for the millions of Americans who care for chronically ill, aged or disabled loved ones.
The Caregiver Resource Room is an online service of the Administration on Aging, where families, caregivers, and professionals can find information about The National Family Caregiver Support Program.
Caregivers are often so concerned with the needs of their loved one that they neglect themselves. The American Medical Association has created a self-evaluation tool for caregivers, which includes a questionnaire, tips, and additional resources.
Family Caregiver Alliance was the first community-based nonprofit organization in the country to address the needs of families and friends providing long-term care at home. FCA now offers programs at national, state and local levels to support and sustain caregivers. FCA offers disease-specific information for caregivers, and has many publications available in English, Spanish, and Chinese.
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In the News
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A recent survey conducted for the National Alliance for Caregiving and AARP, funded by MetLife Foundation, estimates there are 44.4 million caregivers who provide unpaid care to another adult. Almost six in ten (59%) of these caregivers either work or have worked while providing care. And 62% have had to make some adjustments to their work life, from reporting late to work to giving up work entirely. To access PDF versions of the report "Caregiving in the US", as well as key findings from the survey, go to the website of the National Alliance for Caregiving.
At the beginning of July, California became the first state to mandate partial paid leave for working family caregivers. California's paid family leave law allows workers to receive 55% of wages, up to $728 per week, for caring for family members who are ill or for new babies. Workers apply to a state-administered employee-funded insurance fund; the average premium is $27 per year, while minimum wage earners pay about $11 per year for the insurance. See more information about the law.
While California is the only state to offer paid leave for family caregivers, many working caregivers are eligible for unpaid leave under the Family and Medical Leave Act. The National Partnership for Women and Families have good information about FMLA, including a Q&A section and publications in both English and Spanish.
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What's New @ HFA
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The 2005 HFA National Bereavement Teleconference will focus on "Living With Grief: Ethical Dilemmas at the End of Life." The date will be announced in this e-newsletter as soon as it is available. There will not be an August issue of the e-newsletter; the next HFA e-news will arrive on Wednesday, September 8. When the teleconference date is set, a separate e-newsletter will be sent out to all of our subscribers.
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F.Y.I
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The Alaya Institute in San Francisco has developed the End-of-Life Counselor Program. Created by Frank Ostaseski, founder of Zen Hospice, the curriculum is designed to provide healthcare practitioners with the essential clinical competencies, counseling skills and spiritual training to function as "midwives to the dying." Applications are currently being accepted for the 2005 End-of-Life Counselor Program comprised of monthly weekends and two 10-day residential intensives. To learn more about the End-of-Life Counselor Program and to download an application, visit the Alaya Institute's Web site.
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This newsletter is sent to more than 6,400 subscribers on
the 2nd Wednesday of every month to keep you informed
of what is happening in the fields of hospice, grief
and bereavement, and caregiving, as well as what's new
at HFA. We encourage you to forward this e-newsletter
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This newsletter is published by Hospice Foundation
of America
1621 Connecticut Ave., NW
Suite 300
Washington, DC 20009
Jack D. Gordon, Chairman
David Abrams, President
http://www.hospicefoundation.org
© Hospice Foundation of America 2004
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