Jan's Story Read online

  Jan's Story

  Love Lost to the Long Goodbye

  of Alzheimer's

  by

  Barry R. Petersen

  California

  USA

  Behler Publications

  California

  Jan's Story

  A Behler Publications Book

  Copyright © 2010 by Barry R. Petersen

  Cover design by Cathy Scott – 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, 1949—Mental health. 2. Alzheimer's disease–patients– Colorado–Biography. 3. Journalists–United States–Biography. 4. Petersen, Jan Chorlton, 1949- I. Title.

  RC523.2.P48 2010

  362.196'8310092–dc22

  [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

  www.behlerpublications.com

  Manufactured in the United States of America

  Advance Praise for 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 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-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 – 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 humor…as true as the blue of a Texas sky. Barry and Jan were slowly, excruciatingly lowered into a version of hell …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 – 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 scientist…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 th
e 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

  Table of Contents

  Foreword by Katie Couric

  The Disease

  From Barry

  Prologue

  Walking Into Oblivion: Stage One

  1

  2

  Walking Into Oblivion: Stage Two

  3

  Walking Into Oblivion: Stage Three

  4

  5

  6

  7

  8

  Walking Into Oblivion: Stage Five

  9

  10

  11

  12

  Walking Into Oblivion: Stage Six

  13

  14

  15

  16

  Walking Into Oblivion With No Exit: Stage Seven

  17

  18

  19

  20

  21

  22

  23

  24

  Acknowledgments

  Resources Page

  Jan's Story Discussion Questions

  Foreword by Katie Couric

  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:

  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.

  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

  The Disease

  “In Alzheimer's Disease, as in other types of dementia, increasing numbers of nerve cells deteriorate and die. A healthy adult brain has 100 billion nerve cells, or neurons, with long branching extensions connected at 100 trillion points … called synapses …

  “Different strengths and patterns of signals move constantly through the brain's circuits, creating the cellular basis of memories, thoughts and skills.

  “In Alzheimer's Disease, information transfer at the synapses begins to fail, the number of synapses declines and eventually cells die.

  “Brains with Alzheimer's Disease show dramatic shrinkage from cell loss and widespread debris from dead and dying neurons.”

  Alzheimer's Association

  2009 Alzheimer's Disease Facts and Figures

  “More about Alzheimer's Disease”

  Page Seven

  Percentage Changes in Selected Causes of Death 2000 and 2006

  Heart Disease Percentage change - 11.5

  Breast Cancer Percentage change - 2.6

  Prostate Cancer Percentage change - 8.7

  Stroke Percentage change - 18.2

  Alzheimer's Disease Percentage change + 46.1

  SOURCE: Alzheimer's Association, 2010 - Alzheimer's Disease Facts and Figures

  ~From Barry~

  I never intended to write this book. I saved my notes and my “Jan Updates” and the e-mails people sent me so I could read and remember how Jan was on this day or that.

  It was also my way of measuring how I was losing her. And with these notes, I could forever go back and keep alive, in my memory, the shared moments she has lost.

  You will find in this book a wonderful, loving and accomplished woman … My Jan.

  I hope you will understand why my journey could not end with Alzheimer's taking her away. And if you understand that, you will know why I came to write this. For those caught in this never-ending twilight, perhaps there will be guidance here, if only in knowing you are not alone.

  I now entrust this chronicle to you. You will read the choices I made driven by every human's strongest needs … love and survival.

  Some will take heart, some will condemn. This is up to you.

  I offer only this: I believe that by sharing this journey, and by living beyond Jan's battle with Early Onset Alzheimer's Disease, I honor her.

  My Jan.

  Prologue

  “Every man's memory is his private l
iterature.”

  ~Aldous Huxley

  May I tell you the story of how I never proposed to Jan?

  No getting down on bended knee, no diamond ring in a box—because I was so broke after a divorce that I couldn't afford a ring.

  No Jan sitting in some fancy restaurant, choking up, blurting out a joyful “Yes.” We had been friends for a while because she worked at the CBS TV affiliate in Seattle and I would travel there for stories, often working out of their newsroom.

  One evening … the first time she ever invited me to her tiny one-bedroom apartment overlooking Lake Washington … we sat and talked. It was never more than that … sorry … no scenes that censors would take out of the movie version.

  It was just that, somehow, we knew - both of us - that we would be together from then on, HAD to be together.

  I gently kissed her goodnight and walked away and felt as if I had been in an earthquake. I was shaken and elated, scared, but also ecstatic with the sense of being alive … I knew my life had changed in brilliant ways.

  We were married in San Francisco on Valentine's Day in 1985, and then lived here and there across the globe … San Francisco, Tokyo, Moscow, London and back to Tokyo and Beijing.

  My job as a journalist for CBS News provided Jan and me with the ability to see and experience the world. Much of it was wonderful, some of it still gives me nightmares.

  In Sarajevo one day, a mortar round hit near where the crew and I were standing outside by our armored car. Two people were killed and a piece of shrapnel buried itself in our armored car inches away from where I was standing. We went there to do a job … we reported on the old women and children killed and we dodged the same sniper fire.

  In the aftermath of the Rwanda genocide, I was sent to cover the thousands who fled to a volcanic plain in what is now the Democratic Republic of Congo. Soon thereafter, a cholera epidemic broke out and people died for lack of a gallon of water and some salt. How many bodies do you see stacked up near mass graves that are being dug by bulldozers before you lose count and forget? I did a story at an orphanage where we knew the littlest and sickest babies would be dead in a few hours before the story even aired back in the US.