Jan's Story
Authors: Barry Petersen
Love Lost to the Long Goodbye
of Alzheimer's
by
Barry R. Petersen
California
USA
California
Jan's Story
A Behler Publications Book
Copyright © 2010 by Barry R. Petersen
Cover design by Cathy Scott â
www.mbcdesigns.com
Front cover photo used with permission by Erick H. Petersen
“Chronic Stress Can Steal Years From Caregivers' Lifetimes” (c) Prof. Jan Kiecolt-Glaser, quoted with permission of the author
Author photo used with permission from John Carman
All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying, recording, or by any information storage and retrieval system, without the written permission of the publisher, except where permitted by law.
Library of Congress Cataloging-in-Publication Data
Petersen, Barry (Barry Rex), 1949-
  Jan's story : love lost to the long goodbye of Alzheimer's / by Barry Petersen and Jan Chorlton Petersen.
     p. cm.
  ISBN-13: 978-1-933016-44-3 (softcover)
  ISBN-10: 1-933016-44-2 (softcover)
  1. Petersen, Jan Chorlton, 1949âMental health. 2. Alzheimer's diseaseâpatientsâ ColoradoâBiography. 3. JournalistsâUnited StatesâBiography. 4. Petersen, Jan Chorlton, 1949- I. Title.
  RC523.2.P48 2010
  362.196'8310092âdc22
  [B]
2010001261
FIRST PRINTING
ISBN 13: 1-933016-44-3
e-book ISBN 978-1-933016-97-9
Published by Behler Publications, LLC
Lake Forest, California
Manufactured in the United States of America
Jan's Story
“
Jan's Story
is about never forgetting what we once had and cherished⦠what we once had and lost.”
~ Katie Couric,
Anchor-Managing Editor, CBS Evening News
“This is a love story, a travelogue, a television historyâ¦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-Managing Editor, NBC Nightly News
“An intimate and courageously honest memoir about devastating loss, enduring love, and finding the 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
“I knew my long time CBS News colleague Barry Petersen, one of the best and most admired correspondents in the business, through his unforgettable coverage of important events in faraway places all over the world. In
Jan's Story
he uses all his writing and reporting skills to tell the story of what happened to shatter his own world. Now I understand better how vulnerable we all are to the most terrible kind of identity theft.”
~ Charles Osgood,
Anchor, CBS News Sunday Morning
“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
“Have the courage to read this book with an open heart and mind, talk about it, and interrupt the silence.”
~ Lisa Snyder, MSW, LCSW,
Dir, Quality of Life Programs, UC-San Diego Shiley-Marcos Alzheimer's Disease Research Ctr., author of
Speaking Our Minds â What it's Like to Have Alzheimer's
.
“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.”
~ Jon LaPook, MD
- Medical Correspondent, CBS Evening News with Katie Couric, Associate Clinical Professor of Medicine-Columbia University Medical Center
“I knew Jan and Barry from their days in Moscow, London and Asia. She was intelligent, talented, and gracious, always with a smile and with a wonderful sense of humorâ¦as true as the blue of a Texas sky. Barry and Jan were slowly, excruciatingly lowered into a version of hell â¦and faced heartbreak with courage and Alzheimer's Disease with a will to survive.”
~ Dan Rather,
Anchor, Dan Rather Reports, HDNet
“This story of immense love and the terrible loneliness of caregiving left me in tears. As Jan surrendered to the ravages of Alzheimer's, Barry cared for her as best he could. I know firsthand the demands of caregiving. When I was 12 years old, my father became terminally ill with leukemia. As the oldest and as a daughter, I helped my 34 year old mother. Caregivers like Barry often feel isolated, inadequate, and not knowing where to turn for help or how to share their feelings of despair with others. As America ages, many more of us will become caregivers, and millions will soon be making the same journey that Barry made with his beloved Jan. This book will give comfort to those already caregiving, and offer insight to the many who don't know today that this may be their life, and their story, tomorrow.”
~ Rosalynn Carter
, former First Lady and President of the Board of Directors of the Rosalynn Carter Institute for Caregiving at Georgia Southwestern State University, Americus, GA
“
Jan's Story
will offer solace and support to others as they seek support systems while enduring 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
“This is one of the most honest portrayals of caring for someone with Alzheimer's disease I've read. This is not just a book about loss, it is a book about hope.”
~ Darby Morhardt, MSW, LCSW.
Research Associate Professor and Director â Education, Cognitive Neurology and Alzheimer's Disease Center, Northwestern University Feinberg School of Medicine
“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
“An intimate look into a man's life, caring for his beloved wife, and surviving the heart-wrenching ordeal imposed by The Disease. “
~ 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
“
Jan's Story
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
“It is impossible to read this book without wanting to help fight this disease. As a laboratory scientistâ¦it is easy to 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, Great Falls, MT
“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. 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,
COO, Allen Institute for Brain Science
To everyone who reached out with a phone call, an e-mail, a letter, a hug.
And to the one who ever so gently pulled me back from the abyss, and then patiently taught me what every caregiver who cries through night's darkness needs to know.
You are not alone.
“I call heaven and earth to witness against you today, that I have set before you life and death, the blessing and the curse. So choose life in order that you may live, you and your descendants.”
Deuteronomy 30:19
New American Standard Bible
Walking Into Oblivion: Stage One
Walking Into Oblivion: Stage Two
Walking Into Oblivion: Stage Three
Walking Into Oblivion: Stage Five
Walking Into Oblivion: Stage Six
My colleague, Barry Petersen, and I share something that we both work hard at, and take much pride in, and that is being television news journalists. We also share something in our personal lives that is difficult for both of us; losing our spouses. Jay was just 42 when he died of colon cancer in 1998. One of the many ways I have honored his life is working to encourage every American 55 and over to have a colonoscopy.
Barry is enduring a similar loss, but in a very different way. His lovely wife, Jan, has Early Onset Alzheimer's Disease, and Barry wrote
Jan's Story
to show the terrible impact this disease imposes not just on the person with the diagnosis, but also on the caregiver and the family.
The growing toll of Alzheimer's Disease was brought in to sharp focus for Americans when former President Ronald Reagan shared with all of us that he had the disease. On November 5, 1994, he released a handwritten letter. This is part of what he said:
    Â
I have recently been told that I am one of the Americans who will be afflicted with Alzheimer's Disease. In the past Nancy suffered from breast cancer and I had my cancer surgeries. We found through our open disclosures, we were able to raise public awareness. We were happy that as a result many more people underwent testing. They were treated in early stages and able to return to normal, healthy lives.
    Â
So now, we feel it is important to share it (Alzheimer's Disease) with you. In opening our hearts, we hope this might promote greater awareness of this condition. Perhaps it will encourage a clearer understanding of the individuals and families who are affected by it.
It was brave for President Reagan to be this open. He and Nancy knew that people would forever see him in a different light after his admission. But he also believed that his decision could show us all something about honesty in facing the disease that was devastating his mind and robbing him of his memories. The way he shared his personal story with the world encouraged others to be open with their family and friends and not treat Alzheimer's as some kind of shameful secret.
President Reagan's disease came late in life. Early Onset Alzheimer's Disease is about youth and dreams cut short.
Jan's Story
will give you a clearer understanding of what happens when Alzheimer's attacks someone so young. Jan was only 55 when she was formally diagnosed, although she showed symptoms for years.
As their journey unfolds, there is another story here, and this one is about Barry. Like others dealing with this disease at such an early age, he struggled to care for his beautiful wife and to also find ways that he could go on living.
It is a challenge for those left behind; a combination of guilt because you are the survivor, and the natural instinct to move forward. We do not want to forget the ones we loved so deeply, but we also want to find a balance between the past and the urgent need to go on with life for ourselves and the loved ones in our lives who depend on us.
This book can help those who have come to this terrible crossing because they can now appreciate the fact that they are not alone. And those who have not personally experienced this disease will find a story that will help them understand what others have endured.
Jan's Story
is about understanding the difficulty and pain of being left behind. We live and love believing that we have many years ahead of us. When the person we have loved leaves us, we need to find strength and go on, day by day.
As Barry writes, 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 is anchor and managing editor of the
CBS Evening News with Katie Couric
and correspondent for
60 Minutes