Waking Up Dying: Caregiving When There Is No Tomorrow, published March 25, 2014, Robert A. Duke, $17.95, Good Enough Publishing.
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Waking Up Dying was written for any American 40 or older who’s either considering or confronted by his or a loved one’s mortality. Call them what you will: boomers, gen-xers, AARP members, patients, or caregivers. At a minimum there are 65 million of them and their numbers are increasing daily.
BUY Waking Up Dying by sending $22.95 (including shipping and handling) by PayPal to firstname.lastname@example.org or by personal check to Good Enough Publishing 4949 Samish Way, #8, Bellingham, WA 98229. (WA residents include 8.75% sales tax.)
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Nationally, since the 2004 National Institute of Health’s Statement on Improving End-of-Life Care, the American Healthcare system has been acknowledged as broken. Local alliances, such as the Whatcom Alliance for Health Advancement, have sprung up nationally to reform community healthcare that even healthcare grassroots providers agree is broken.
Waking Up Dying is a thoroughly documented tale of two journalists’ (patient and caregiver) harrowing trek through this broken, dysfunctional and indifferent system. It is their first-person memoir of their successes and failures in negotiating the broken system during 18 months of terminal cancer treatment.
The surprise in Waking Up Dying is that by all conventional standards the protagonists were well prepared for their ordeal. The frightening reality, though, was that their preparations for an end-of-life event were of little use. The grim circumstances of care and treatment for terminal cancer demanded skills that observers say few patients possess. What was missing from our treatment equation was a real-time continuously involved professional care manager. Ultimately, the healthcare system identified 22 care manager job titles, but in reality none were available when needed. Why, you may wonder? It’s because the healthcare system’s priorities focus on its preservation and self-interest, and not the patient. The system is indifferent to the individual patient.
“Thank you for sharing your story. Hopefully it will lead to changes in the way medicine sees itself. I shared it with several others. One person who read it was one of our hospital administrators. She was profoundly moved. We talked and agreed that our neuro-oncology team really needs a social worker who can help guide patients and families through the complex morass of the medical business. I believe that many of the obstacles you ran into are common for many cancer patients.”
–By Daniel L. Silbergeld, MD, FAANS, FACS. Department of Neurological Surgery, University of Washington School of Medicine
“Your book was such an incredible experience to read and really caused me to reflect on the difficulties of the dying. Our healthcare system is completely broken for (them) and your book’s title accurately reflects the horrible condition of our system. Being a member of the Whatcom County Council/Board of Health has given me opportunities to complain about many of the issues you experienced. I intend to keep on sharing your book so others will know how important it is to improve the health care system.”
–Barbara Brenner, six-term Whatcom County Councilmember, District 3, Position B. Named Health and Social Services Newsmaker of the Year by the Bellingham Herald.
“The last thing I wanted to do is read about a friend’s death from brain cancer.
Then I couldn’t put it down.
The book is Waking Up Dying – Caregiving When There Is No Tomorrow, a self-published memoir and critique of the medical system by Robert Duke, husband of Shearlean Duke, who died.
It’s a well-written, remarkable compilation of narrative, e-mail updates, lists, sidebars, and medical documents edited and organized by Cami Ostman of Bellingham, WA, a writer who did her own book on trying to marathon on seven continents.”
–By B Dietrich on May 21, 2014
“Bellingham writer Robert Duke’s book, Waking Up Dying: Caregiving When There Is No Tomorrow, is graphic, intense and frightening.
Graphic because he doesn’t hold back describing the damage from the brain tumor that killed his wife of 40 years, Shearlean.
Intense because Duke lays out the challenges and emotional toil he and his wife faced dealing with healthcare providers in Seattle and Whatcom County, with Duke as his wife’s caregiver.”
–By Dean Kahn, The Bellingham Herald on July 28, 2014
“An intensely personal and compelling narrative, Waking Up Dying offers an insider’s perspective of the passage through cancer beginning with Duke’s wife’s diagnosis of stage IV glioblastoma brain cancer—typically a fatal condition.
Duke found the entire caregiving experience an agonizing, non-stop emotional rollercoaster: unbelievably frustrating, emotionally searing and increasingly chaotic.
The author’s story of his dedicated and loving role as caregiver entails four phases of this tortuous journey: the couple’s daily coping with the disease; the author’s struggle through the health care system; the emotional reality of caregiving his dying wife; and the carefully documented material put forward as a basis for reforming the care system.”
–By N. Davis, Ph.D. On July 12, 2014, Chanticleer Reviews
“An honest and clear-eyed story about one caregiver’s journey alongside a loved one with a terminal diagnosis, asking hard questions about what the medical community should do (and should not do) when it cannot save a life, and about the physical, psychological and financial burden on caregivers. Duke’s accounting of the year and a half he cared for his wife tells a story of love and commitment, paired with frustration and anger about the ways that our current healthcare models fail to support either the patient or the caregiver after a terminal diagnosis.”
–Marie D. Eaton, Professor of Humanities and Education, Fairhaven College, Western Washington University.
“Waking Up Dying is a compelling and moving narrative about one family’s all-too-typical experience of the healthcare behemoth during the dying process. Mr. Duke draws into focus, in a personal way, all the many ways our non-system impedes families and caregivers from doing what they think is just and right during dying. This book held my interest as I anticipate what next could possibly happen on Mr. Duke’s wife Shearlean’s final journey.”
–Larry Thompson, Executive Director, Whatcom Alliance for Health Advancement. A graduate of Johns Hopkins and the University of Oregon, with more than 30 years administrative experience in every sector of health and medical care.
“It is testimony to your skill as a writer that I surprised myself by reading (Waking Up Dying) quickly and to the end, given subject matter none of us likes to grapple with. I found it honest, sobering, instructive and heartfelt.”
—William Dietrich, NY Times bestselling author and Pulitzer-winning journalist, author of 15 books including prize-winning Northwest environmental texts.
“I am profoundly impressed with your book. It is a beacon of help and guidance to people who face incredible and catastrophic events in life. The clarity of your writing shows great sensitivity and love and serves, with its list of things ‘to do’ under such duress, as an outline for how to survive and keep track of the daily demands of caring for a dying loved one.”
— Lyle E. Harris Sr., Ph.D, is journalism professor emeritus at Western Washington University. He was formerly chair of the Department of Journalism and taught Mass Media Law and was director of the Business Journalism Department at the University of Missouri.
“Bob Duke’s book is a heart-wrenching and angering story of how he channeled his love and caretaking for his dying wife into a full-throated indictment of our medical system that often put its own welfare ahead of his wife’s. This book is a must-read for all of us who some day may confront a similar tragedy, of how to feel, without much hope, gut-wrenching love, fear and anger all the while providing tender care.”
— Bob Schober, former reporter with The Dallas Morning News and The Durango Herald.
“Contains helpful caregiving information for glioblastoma brain cancer victims such as my late husband Rod.”
–Marianne Brudwick of the Brudwick 5 Memorial Scholarship fund and founder of the Glee Club, a glioblastoma support group for survivors and their families.
“Waking Up Dying details the final and critically important journey you and Shearlean took together. Although I realize that such a book would be very difficult to write, the topic is timely and I expect the information you share will be much appreciated by other caregivers as well as professionals in the healthcare system.”
–Brent Carbajal Provost and VP for Academic Affairs, Western Washington University, Bellingham, WA.
“A terrific and valuable work.”
–Reanne Hemingway-Douglass, author and publisher.