Suggested Books & Websites
We are always interested in adding new helpful links to our site. If you have found something on another site to be particularly helpful and think that we should include it on our resource page, please send us the information through our Contact Us page.
Communication Sites:
Caring Bridge
Free, personalized websites that support and connect loved ones during critical illness, treatment and recovery.
CarePages
CarePages websites are free patient blogs that connect friends and family during a health challenge.
Books on cargiving, grief and loss:
DeKalb County Hospice offers a library of helpful books available to the public at our office located at 2727 Sycamore Road, DeKalb.
The Validation Breakthrough by Naomi Feil
Simple Techniques for Communicating with People with Alzheimer's-Type Dementia
The Needs of the Dying by David Kessler
A guide for Bringing Hope, Comfort, and Love to Life's Final Chapter
The Four Things That Matter Most by Ira Byrock
A Book About Living
It Takes a Village to Say Goodbye by Doug C. Smith, MA, MDiv and Dorreen K. Rardin, RN, BSN
A Book of Resources for Family and Friends of the Terminally Ill and Grieving
A Different Season, The Hospice Journey by G. Leigh Wilkerson, RN
Final Gifts by Maggie Callanan and Patricia Kelley
Understanding the Special Awareness, Needs and Communication of the Dying.
Final Journeys, by Maggie Callanan
A Practical Guide for Bringing Care and Comfort at the End of Life.
Websites & Videos on grief and loss:
www.centerforloss.com
www.adec.org
www.bereavementmag.com
www.goodgriefresources.com
www.griefnet.org
www.aarp.org/families/grief_loss/
www.compassionatefriends.org
www.webhealing.com
www.journeyofhearts.org
www.widownet.org
www.griefinc.com
www.goodgrief.net
www.palliativedoctors.org
www.painfoundation.org
www.il-hpco.org | videos
www.nhpco.org
www.capc.org
www.hfa.org
The National Hospice Foundation and National Hospice and Palliative Care Organization now have six short videos that look at the basics of hospice care and you can see the series on NHPCO's YouTube channel, www.youtube.com/user/NationalHospice
The National Hospice Foundation has a Facebook page. www.facebook.com/NatHospFdn join in the dialog on various hospice topics.Articles:
Why End-of-Life Planning is Smart, Necessary
Dec. 28, 2010
By J. Donald Schumacher, Special to CNN
Editor's note: J. Donald Schumacher is president and CEO of the National Hospice and Palliative Care Organization, a public policy group that represents hospices
(CNN) -- Thinking about death can be frightening, no matter your age or medical condition. As we get older, the reality of our own mortality tends to come into clearer focus; this doesn't make talking about death or life-sustaining treatments any less frightening though.
It was fear -- stoked by certain politicians -- that led to the inaccurate and misguided "death panel" rumors that surrounded health care reform proposals last year.
Beginning January 1, Medicare will reimburse physicians who advise patients, in voluntary discussions, about their preferences for end-of-life care treatment during their annual Medicare "wellness visit." This is advance care planning, and it is a good thing for seniors, their families and health care professionals.
The New Old Age - The New York Times - Nov. 2, 2010
End-of-Life Care for Patients with Advanced Dementia
It's hard for physicians to determine with much precision how long anyone with a terminal disease can expect to live, but it's particularly challenging when the disease is advanced dementia.
"People with dementia get sicker inch by inch," said Lin Simon, director of quality at Gilchrist Hospice in Baltimore, the largest hospice organization in Maryland. "Trying to say, 'Now, she's ready for hospice' is much harder."
Annals of Medicine - The New Yorker - Aug. 2, 2010
Letting Go - What should medicine do when it can't save your life?
by Atul Gawande
Click here to read more
60 Minutes Re-broadcasts Segment on Costs of Care...
60 Minutes news correspondent Steve Kroft did a piece on costs of care at the end of life that was originally broadcast last November. NHPCO staff worked closely with CBS producers on the original segment which was re-broadcast last Sunday (08/08/10) with an additional update from Mr. Kroft. NHPCO provided information for the update.
The New Grief
in The Huffington Post, says that the nature of grief has changed as "modern medicine... is getting better and better at staving off death." Death has become "less and less a sudden and unexpected event," and more a "process that begins with a diagnosis, proceeds through a period of treatment (or treatments), and ends eventually in death." Patient and family must "live with death" for a longer period of time.
This new grief means dealing with changing relationships, coping with setbacks and remissions, talking about death, dealing with grief in the midst of busy lifestyles, and "confronting family issues that may have been dormant - but unresolved - for many years." The new grief also "means moving forward together, potentially as a stronger and more resilient family, after a loved one passes."
(The Huffington Post, 8/14, www.huffingtonpost.com/joseph-nowinski-phd/the-new-grief-how-modern_b_677508.html)
Free Guide for Families from the Alzheimer's Association - Greater Illinois Chapter
The Alzheimer's Association-Greater Illinois Chapter is offering a free online resource, Encouraging Comfort Care: A Guide for Families of People with Dementia Living in Care Facilities. This 21-page booklet provides useful information to families and staff of long-term care facilities about Alzheimer's disease and other dementias, particularly care issues related to the late and final stages.
This guide will enable families to make informed choices about a variety of medical decisions they may face on behalf of loved ones with dementia living in nursing homes, assisted living facilities, and other types of care facilities. It also will help families ask good questions aimed at obtaining the best care for their loved ones, including a handy checklist of comfort care measures to be discussed with staff members of care facilities.
For staff members of long-term care facilities, the guide will serve as an important tool for those who wish to educate families and assist them in care planning. Individuals and organizations are encouraged to disseminate this booklet in electronic and print formats.
Encouraging Comfort Care was made possible through a generous grant from the Retirement Research Foundation to the Alzheimer's Association-Greater Illinois Chapter.
To view and download the free guide, click here: www.alz.org/illinois
