Love lost to the long goodbye of Alzheimer’s
By Barry Petersen
Foreword by Katie Couric
Acclaimed CBS News reporter Barry Petersen, writes about hearing the unimaginable: what it meant, what it still means, what he did–and didn’t do–and how this beautiful love story needs to be read by the thousands of families who have already heard that same devastating diagnosis… EARLY ONSET ALZHEIMER’S.
Jan’s Story is a full, rich story of two people–and thousands like them–for whom “forever”suddenly and terrifyingly has an expiration date.
Barry Petersen is a long-time, award-winning TV journalist who has covered wars, the devastating Asian tsunami, the historic confrontation at Tiananmen Square, the unspeakable deaths in Rwanda, and so much more…but was not even slightly prepared for what happened to his darling wife, Jan.
About the Author
Multiple Emmy award winner Barry Petersen has covered wars, genocide, interviewed Jimmy Stewart (who answered the door to his Beverly Hills home himself), Anthony Hopkins and several Bosnian War Crimes Tribunal suspects. He covered the war in Bosnia, Tiananmen Square and Rwanda.
Barry watched Mikhail Gorbachev walk among the crowds in the streets of Vilnius, Lithuania, begging them to stay in the Soviet Union and reported on the Iraq war, living on adrenaline, cigarettes and cookies, while having a target painted on his back.
Barry earned one of his Emmys for reporting the Siege of Sarajevo for CBS Sunday Morning. He shared both Peabody and DuPont Awards for being a part of the CBS News Radio coverage of the Tiananmen Square uprising in 1989, and an Edward R. Murrow award for, of all things, sports writing for a story on baseball coming to Beijing.
Prior to working in television, Barry was a reporter, copyeditor, photographer and sometimes columnist for several newspapers including the Milwaukee (WI) Journal, Chicago (IL) TODAY, Omaha (NE) World-Herald and the Miami (FL) Herald.
Visit Barry’s website: www.barrypetersen.com/
Reviews and Accolades
Denver Post Bestseller
This is a love story, a travelogue, a television history…and a stunning, achingly personal journey. Dashing and fearless, nothing could stop Barry, the veteran war correspondent, until tragedy knocked him cold. This is the story of life, love, loss and renewal.
~ Brian Williams, Anchor and Managing Editor, NBC Nightly News
As Barry shows in Jan’s Story, all of us learn, in time, to accept that our beloveds would wish us to have a second chance at life, just as we would wish that for them. We do that while never forgetting what we once had and cherished… what we once had and lost.
~ Katie Couric, anchor and managing editor of the CBS Evening News with Katie Couric and correspondent for 60 Minutes
This is a true story that reads like a novel. I knew Jan and Barry from their days in Moscow, London and Asia. More than once, she and Barry opened their home to me. She was intelligent, talented, and gracious, always with a smile and with a wonderful sense of humor…as true as the blue of a Texas sky. And then Barry and Jan were slowly, excruciatingly lowered into a version of hell that enveloped them like a dark, toxic fog. Jan’s Story tells how they faced heartbreak with courage, and Alzheimer’s Disease with a will to survive.
~ Dan Rather, anchor of Dan Rather Reports, HDNet
I thought I knew my long time CBS News colleague Barry Petersen, one of the best and most admired reporters in the business, through his unforgettable coverage of important events in far away places all over the world. Now in Jan’s Story he uses all his writing and reporting skills to tell the story of what happened to shatter his own world, and how Alzheimer’s Disease slowly and cruelly robbed his lovely wife Jan of her memory, and both of them of the most precious things in life. I feel having read it that I do know Barry better now, and understand better how vulnerable we all are to the most terrible kind of identity theft.”
~ Charles Osgood, anchor, CBS News Sunday Morning
Alzheimer’s Disease is unimaginably cruel. Jan’s Story proves that love’s resolve is present and everlasting in trying times. Barry’s honest approach brings courage to those families entwined in this devastating, and to date, incurable affliction. His writing is a love story trapped in a travesty, but one from which we can all learn to heal our hearts.
~ Newt Gingrich, Co-Chair of Alzheimer’s Study Group and Founder of The Center for Health Transformation, former Speaker of the U.S. House of Representatives
Barry Petersen’s utterly honest love story moved me to tears. With a reporter’s eye for detail and a poet’s insight, he poignantly shares his desperate attempt to care for the wife he adores. The book succeeds because he hides nothing. He intimately leads us through his fear, anger, magical thinking, guilt, depression, and – ultimately – reborn hope.
~ Jon LaPook, MD – Medical Correspondent-CBS Evening News with Katie Couric, Associate Clinical Professor of Medicine-Columbia University Medical Center
What made Barry Petersen great as a TV correspondent has enabled him to write more than a love story. He has distilled the charged emotions and “private war stories” of every caregiver who shares the battle against Alzheimer’s with a loved one. No disease deserves to ravage and claim two victims over years. No one who has ever been a caregiver ever questions when another says “I can’t do it anymore”. Jan’s story is a must read by every caregiver, family member and well meaning friends.
~ Meryl Comer, President Geoffrey Beene Foundation, Alzheimer’s Initiative [The foundation was a partner in the recent HBO series on Alzheimer’s]
None of us wish to experience the slow, insidious theft of a loved one by Alzheimer’s disease, but, unfortunately, many of us will. With incredible honesty, Barry Petersen has applied his immense skills as a journalist to chronicling the effects of early onset Alzheimer’s disease on a couple deeply in love.
Barry’s empathy with Jan gives us glimpse into her experience while progressing through the early stages of disease. His pain is clear while the person he loved, and still loves, gradually becomes inaccessible. By courageously sharing his fears, challenges, doubts, and decisions throughout the progression of Jan’s disease, Barry offers his unique and highly personal story as an example to help others understand the incredible impact on both the patient and the caregiver.
While experiencing loss is a part of life, losing a loved one to Alzheimer’s disease is particularly cruel. It is impossible to read this book without wanting to help fight this disease. As a laboratory scientist working to develop mouse models that can be used to study Alzheimer’s disease, it is easy to focus on amyloid plaques, neurofibrillary tangles, and neuron loss and avoid confronting the personal loss experienced by the patient and family. There is no avoiding the personal effects of disease in Jan’s Story.
~ George A. Carlson, Ph.D., Director and Researcher, McLaughlin Research Institute
Jan’s Story is a love story. Not about finding the love of your life, but rather losing her – to Early-Onset Alzheimer’s Disease, a form of the disease that affects people in the prime of their life.A vast majority of Alzheimer’s caregivers today are women. Yet the story behind Jan’s Story is an intimate look into a man’s life, caring for his beloved wife, and surviving the heart-wrenching ordeal imposed by The Disease. In the absence of a cure, the best one can do is provide care and enduring love, and to be the last one standing – not a secondary victim to The Disease. The story behind Jan’s Story is Barry’s Story – spousal love, support, survival, and the lessons to be learned.
~Mark Warner, Gerontologist, The Alzheimer’s Daily News, author of The Complete Guide to Alzheimer’s-Proofing Your Home and In Search of the Alzheimer’s Wanderer (Purdue University Press)
In Jan’s Story, Barry Petersen shares his journey into life as a caregiver to his wife, Jan, diagnosed with Early Onset Alzheimer’s Disease at fifty-five. An intimate and courageously honest memoir about devastating loss, enduring love, and finding strength to carry on, Jan’s Story is a gift to other families dealing with younger onset Alzheimer’s, not because their challenges and decisions will exactly mirror Barry’s and Jan’s, but because they will know that they’re not alone.
~ Lisa Genova, New York Times Bestselling author of Still Alice
“A very 21st century take on the shattering experience of having a spouse with early onset Alzheimer’s disease. Barry Petersen combines traditional narrative, transcribed emails, and clinical descriptions of the seven stages of Alzheimer’s disease to bring the reader into his wrenching account of his vibrant 55 year old wife’s descent into dementia and beyond.
“With his naturally journalistic eye, Barry includes angles to his story that are not often found in such memoirs. He lays bare his own emotions and the crush of the financial burden, ultimately culminating in his “moving on” and the guilt that that brought to him. A bedroom scene, late in the book, is almost too painful to contemplate, and must be read to be fully appreciated.
“Barry writes about his “Alzheimer’s buddies”, fellow traveler spouses of others affected by the disease. As these buddies comforted Barry, his own voice in Jan’s Story will offer solace and support to others as they seek to find their own support systems while enduring–and trying to survive– the 24/7 agony of watching a life partner transformed into some “other”, who then gradually vanishes completely before one’s very eyes.
~ Sam Gandy, M.D., Ph.D., Chairman Emeritus, National Medical and Scientific Advisory Council, Alzheimer’s Association, Mount Sinai Chair in Alzheimer’s Disease Research, Professor of Neurology and Psychiatry Mount Sinai School of Medicine
“Barry’s beautifully told love story of two healthy, vibrant, adventurous people is made more heartbreaking by the desolation caused when family and friends misjudged that Jan had been abandoned. The Disease had invaded Barry and Jan’s life long before anyone knew. Barry’s story will help people understand how the brain can die very slowly while the body still looks healthy and, on some days, can appear normal.”
~ Elaine Jones, Chief Operating Officer, Allen Institute for Brain Science
“This is one of the most honest portrayals of caring for someone with Alzheimer’s disease I’ve read. Barry Petersen shares his grief at the loss of the person he deeply loves, the decisions he faced, the emotional ambiguity he experienced, and the very practical support he needed and sought. There are many who will resonate with his story and appreciate his unsparing and unsentimental approach. He shows us how one can choose to live through the intensely painful times of our lives and be resilient in spite of, or perhaps, as a result of them. This is not just a book about loss, it is a book about hope.”
~Darby Morhardt, MSW, LCSW – Research Associate Professor and Director – Education, Cognitive Neurology and Alzheimer’s Disease Center, Northwestern University Feinberg School of Medicine
“Have the courage to read this book with an open heart and mind, talk about it, and interrupt the silence. With searing honesty and vulnerability, Barry Petersen chronicles one of the loneliest, conflicted, and private dimensions of the Alzheimer’s experience – what it is to love someone when the force of Alzheimer’s is sculpting and shaping that love in unforeseen, wrenching, and even controversial ways. While we follow Barry as narrator, Jan’s own Story is revealed through the largely unspoken and insidious transformations that she and millions of people living with Alzheimer’s reveal when their familiar pathways of love are profoundly disrupted or rendered foreign by the disease. Because it is up to all of us as individuals and as a humane society to recognize that for anyone living through the experience of Alzheimer’s, our capacity to love in all its myriad individual and collective expressions can and must, endure.”
~ Lisa Snyder, MSW, LCSW, Director, Quality of Life Programs, University of California San Diego Shiley-Marcos Alzheimer’s Disease Research Center and author of “Speaking Our Minds – What it’s Like to Have Alzheimer’s.”
“Jan’s Story is a tale that is being lived by millions of people on a daily basis: the loss of a spouse, a loved one, slowly to Alzheimer’s Disease. While Alzheimer’s effects the wider circle of families and friends, it is most punishing to spouses who lose their partners, lovers, best friends and the most profound witness to their shared lives. Barry Petersen’s very personal account of losing his wife Jan to early onset Alzheimer’s is unflinching in his description of these changes and the struggle to redefine oneself throughout the course of the disease. For those who face these issues, this book provides a view into one couple’s journey and survivorship for the well spouse. It confirms that you are not alone, the hardships you face are not isolated and the choices you will have to make are difficult. Read it for solace, read it for knowledge but mostly read it so you know millions are also treading this difficult journey too.
~ Kathleen Kelly, Executive Director of the National Center on Caregiving, a program of the Family Caregiver Alliance, San Francisco CA