Jan's Story (20 page)

Try not to feel guilty. Jan did tell me when we had lunch here in October, 2007, that men need someone to take care of them and that she wants someone to take care of you. To be honest, when Jan sent me the e-mail telling me about her diagnosis, the thought that shot into my mind like an arrow was that she would commit suicide if she still could, because she would not want to put you or anyone else through the agony.

~Annie

“Live as if you were to die tomorrow. Learn as if you were to live forever.”
~Mahatma Gandhi

Someone once said of great art that we do not own it, we merely take care of it for our lifetime and then it is passed on to the next caretaker. When I fell in love with Jan, I thought it would be forever, but I was wrong. I merely had her for that time when she was passing through, touching lives, caring for others, and making me her life.

Jan had a belief that we create our own happiness. When you wake up and face a day feeling that way, the days can be good. Hers were. And because of her, so were many of mine.

In early 1994, while living in London, she set her sights on taking all of us on a safari in Kenya. It was crazy expensive, so we shifted dates to the week after the Christmas holidays to get a better rate and worked with Emily to adjust her school schedule in the States. This was a year in the planning. Julie was living with us while doing a semester at an acting academy.

Jan was the driving force behind the idea. She worried that Kenya had a rocky political future and we needed to go now, before it became dangerous—and she was right because that's exactly what happened a few years later. She felt quite strongly that the girls should see the African wildlife and a beautiful part of the world they had never experienced.

That was Jan's mantra; don't give the girls presents, give them experiences. She did the planning. My job was to pay for it, and this I would cheerfully do. She was using a London travel agency, arranging an itinerary and debating where we would go and how we would get there and the various cost options.

And then came Rwanda in 1994, and I was sent to cover the aftermath of that country's self-inflicted genocide that led Hutus to machete rival Tutsis into pieces, even those hiding in rural churches where they sought sanctuary. The tide then turned. The Hutus were driven into neighboring Zaire (now called the Democratic Republic of Congo), and they fled by the tens of thousands, exhausted, to a bleak volcanic plain.

There was no sanitation, no water, and no way to stop deadly cholera and dysentery once the epidemics got started. It was, without doubt, the worst story I had covered to that point in my career. To me, this was Africa for those few weeks; dust, heat, and death. And the next morning, it started all over again.

There were so many bodies stacked up every day that bulldozers scraped out trenches for shallow mass graves. And still more died. I called Jan daily and talked with her about normal stuff, and that kept me balanced. But one day, she had an agenda when I called. The travel agent needed to know about our safari now, even though it was about three months away. Say yes, or cancel.

I sat in the dusty, tented camp area at the airport where journalists had set up, hunched over and talking with her on the satellite phone. Come back to Africa, where I was now surrounded by the dead and the soon to be dead? In my emotional state, the idea was simply insane, unthinkable. Don't you hear me? I wanted out of here, not talk of coming back. Out!

But she would not accept that. She knew the safari was an experience that would be an amazing gift we could give each other and a stunning adventure for her stepdaughters.

But really, do I have to have this conversation now? Can't they wait?

No. She would not be put off. Answer now.

Perhaps it was some instinct that drove her on that call. She knew the Rwanda story because she had gone to the London Bureau and watched our pieces coming through on the satellite headed for New York and the CBS Evening News. She saw my report on the babies dying at the orphanage and she knew from the tone of my voice that it had shredded my heart. Why the innocent, why always the innocent who suffer? This was the stuff of nightmares, and there were those as well, if and when I actually slept. But she had some instinct, some persistence that I didn't comprehend at first.

I paused and held the phone and looked around where people were dying a few yards away for lack of a gallon of water and some salt. Life in that place, at that moment, was that fragile and that easily gone. And then I got it
—
what she believed and had always told me. If life is fragile, then do your best to love what you have, in that moment, at that time. This was not about a vacation or travel plans or any of that. This was Jan knowing that Barry needed to see past this horror and opt for the future, for life and for love of his children and family, and not surrender to the horror in front of him.

I told her yes, book the safari. And forever after that I remembered her lesson. Choose life. Celebrate life.

I took care of her as long and as well as I could. There were things I should have done better, but these I cannot now change. There were things I did well, and that was good. And now the hardest thing is saying goodbye. I do not know if she would understand or approve. Still, I will take my cue from her, and from what made her, once, everything to me.

Choose life. Celebrate life.

And so, my darling, I will do just that. It will dim the memories of us as I make new ones. The thought of that makes me sad and makes me miss you, but it must be this way.

I wish there had been a moment, a quiet time when you could have talked to me about this. I trusted you to know these things, to guide me when it all seemed black around me. And you always did, until … one day … you couldn't. And then you were gone.

It is too late to give you one last kiss. But I will live how you taught me and choose life and celebrate life, even though moving forward means leaving you behind.

Can there be, somewhere inside your mind, a way you can know that I will always love you? Always miss you?

I feel the touch of your hand in mine slipping away and then it is gone.

I will try not to be sad for what we once had and lost. That won't be easy in the dark of night when no one is looking and the tears still come.

Instead I will work to remember and to celebrate the wonder that we once were. I think that would make you smile.

It is time now. We must go different ways.

Dearest, dearest Jan … with you I once believed in forever.

And I believed I would never have to say … from Darling to Darling …

… Goodbye.

I moved back to the United States in the fall of 2009, to begin living in Denver, CO, under a new contract arrangement with CBS News. It means time with my daughters and my granddaughter.

And it means a new beginning. In Denver, I am now with Mary Nell, that special someone I found despite all my doubts, and who has come to love me, whether I am a bad catch or not.

I am starting a new life with her, but one that also includes Jan.

I moved Jan from Bellevue, WA, to Denver, where she now lives in an assisted living facility. I visit her and oversee her care. It doesn't really matter to Jan since she often doesn't know me when I'm there. But, it matters to me.

Mary Nell encouraged me in this decision. She believes that she and I, and my daughters and granddaughter, and others who will come to know us, will help Jan by watching over her, and by spending time with her.

Some say it takes a village.

We are saying it takes a family, and now we will be one … for Jan.

THE PROS: Literary agent Paul Fedorko would not quit, while TV agents Richard Leibner and his wife, Carole Cooper, understood the importance of life “after,” all of them from that magnificent firm NS Bienstock which has represented me for more than three decades.

Lynn Price at Behler Publications enhanced all she touched. Publicists Meryl Moss and Sarah Hausman of Media Muscle worked on my behalf from one end of America to the other.

THE READERS: I owe each for ideas freely shared. Nancy Jacobsen found a gaping hole and said fill it with a whole new chapter (I did) and my friend and colleague Jill Landes found a different chapter that didn't belong and said take the whole thing out (I did). Jill helped with national electronic media publicity and even roped her book club into reading an early version of “Jan's Story” for their insights.

Ideas also came from Gretchen Lobitz, Lynnetta Windsor, Brian Spano, Anne Drucker, Electa Anderson, a board member of the National Alzheimer's Association, my able assistant Kelly McDermott, and my cousin Marsha Tennant who wrote “Margaret, Pirate Queen” (Mirror Publishing).

JAN'S FAMILY: Caron Chorlton cares for her daughter to a depth only a mother can understand. She humbles me. Jan's aunt Ffolliott “Fluff” LeCoque is as flamboyant as her name. Her dance career started during World War Two and she continues working today. Yet, she always found time to see how I was coping.

In happier times, my brother, Erick H. Petersen, took the picture on the cover. John Carman usually photographs beautiful models and took a step backward taking a picture of the author.

Billie Tisch defines gracious and elegant. She was there, over and over, for Jan and for me. Her son, Andrew, took us into his family. His wife, Ann, once worked at WCCO-TV, where I also practiced journalism, but she did it better (I checked) and looks ever so much younger.

FRIENDS IN THE BUSINESS: Jane and Brian Williams first met Jan in Moscow and remember her as the wonderful woman she once was. Dan Rather dined with us in countries here and there, always gracious even as Jan was fading away.

CBS NEWS COLLEAGUES: When I asked her to write a foreword, Katie Couric immediately said yes and then talked with me about life and loss. Dr. Jon LaPook, the CBS News Medical Correspondent, wrote a blurb for the public and corrected my medical mistakes in private.

When I started at CBS News, Linda Mason was a producer in New York. She was relentless and exacting when she thought a script could be better. Today she is Senior Vice President for Standards and Special Projects and always wanted to know how was I, how was Jan?

Foreign Editor Ingrid Ciprian-Matthews would ask after Jan and then worry about me. CBS Weekend News Executive Producer Pat Shevlin was beyond patient. Paul Friedman, Executive Vice President CBS News, kept me focused on doing good journalism when my attention was pulled elsewhere, and thankfully so did Barbara Fedida-Brill, Vice President for Talent and Development.

CBS Evening News Executive Producer Rick Kaplan's had faith that I would deliver when I promised a story, and Senior Broadcast Producer Chris Dinan made damn sure I did.

Working with Charles Osgood of CBS Sunday Morning is always a privilege, and CBS Sunday Morning Executive Producer Rand Morrison is amazingly supportive of me.

CBS News and Sports President Sean McManus is a child, literally, of television. He is the son of James Kenneth McManus whom the world knew as the legendary sports broadcaster Jim McKay. Sean was exceedingly gracious when I needed to move back to America to start over again.

I owe every co-worker who got me through good days and bad, like Marcy McGinnis, Andy Clarke, Joe Halderman, Alec Sirken, Marsha Cooke, Mark Hooper, Lauren Wanko, Amiel Weisfogel, Steve Glauber, Jason Sacca. Correspondent Dan Raviv is a bestselling author of “Every Spy a Prince” who graciously brought my book to the attention of others. His wife, Dori Phaff, has been Jan's friend from the moment they met.

THE EXPERTS: Lisa Genova, author of “Still Alice,” shared her journey openly. Her generosity overwhelms.

Meryl Comer cares for her husband with Alzheimer's at home and is President of the Geoffrey Beene Foundation Alzheimer's Initiative. She listens, understands, and encourages.

Dr. Marilyn Coors is Associate Professor at the Center for Bioethics and Humanities at the University of Colorado at Denver. Her thoughts forced me to have a few new ones of my own.

Dr. Janet Wessel Krejci, Dean of the Mennonite College of Nursing at Illinois State University, opened doors to Alzheimer's experts.

AND FINALLY: My fellow travelers made every gut wrenching moment of writing worthwhile. Let me share but one comment.

Edy Thogersen's husband, Al, is from the same Montana town of Sidney where I grew up. She was on the original Board of the McLaughlin Research Institute in Great Falls, MT, where they fight diseases like Alzheimer's, and she remains active in their fund raising.

She and Al live in a Continuing Care Retirement Community (CCRC). She sent this:

Barry,

I finished the book a couple of weeks ago and have struggled with words to describe its effect on me. Al has dementia but nothing dramatic like the anger you experienced from Jan. I have been lonely at times but that is one of the advantages of our living situation (in the CCRC). There are a lot of people here to share the misery.

Probably the most profound thing I found in the book was the change in your feelings of intimacy with Jan as your wife. It has taken me a long time to understand how different I feel toward Al and admit to myself that it is OK and a part of the process.

Thank you for being so open and forthright. It has helped me a great deal…. Edy

To Edy, and anyone who finds help in this book, I thank you. I cried often in the struggle to get this story into words, but I kept going. You are the reason why.

Start with the National Alzheimer's Association at
www.alz.org

Its extensive listing of state and city Association affiliates is a doorway to finding support groups in your neighborhood. These are people already dealing with The Disease. One guaranteed surprise – you are doing a lot better than you realize.

The Alzheimer's Association shop at
www.alz.org/shop
and its partner products for sale at
www.alz.org/partnerproducts
offer DVDs, board games, and CDs with ideas for everything from creating shared memories with your loved one to explaining what is happening in the Alzheimer's brain.

Mark and Ellen Warner compile a daily Alzheimer's newsletter and run Ageless Design at
http://www.agelessdesign.com
When I moved Jan into Assisted Living I shopped at their online store for clocks, phones, and other practical items suited for the various stages of Alzheimer's.

CAREGIVING

Nobel Prize winning author Pearl S. Buck had it right when she wrote: “The person who tries to live alone will not succeed as a human being…His mind shrinks away if he hears only the echoes of his own thoughts and finds no other inspiration.”

To see how you are doing with loneliness and stress go to
www.alz.org/stresscheck/
. If you think you can cope all by yourself, experts have a word for that…wrong.

The Well Spouse Association at
www.wellspouse.org/
mission statement says: “
Well spouses help each other in ways no others, not even family, can understand.”

At
www.caregiver.org
, the website of the Family Caregiver Alliance, there are FAQs on caregiving, shared personal stories, a newsletter, and discussion groups.

At
www.caregiver.com
you will find topics like recipes for making meal times easier for caregivers. Here's a piece of advice they offer that I wish I could yell from the rooftop: “What about when friends and family ask, ‘Is there anything I can do?' Answer – Come for dinner Wednesday night and BRING DINNER.”

At
www.aarp.org/family/caregiving
they address housing and mobility, grandparenting, life after loss, love and relationships, and have on-line communities.

The Rosalynn Carter Institute for Caregiving
www.rosalynncarter.org/
was founded in 1987 at Georgia Southwestern State University in Americus, GA, honoring former first lady Rosalynn Carter. Their site's “Evidence Based Resources” section has podcasts and links like one to Medicare Caregiver Information at
www.medicare.gov/Caregivers/
to help with navigating Medicare, and This Caring Home at
www.thiscaringhome.org
on how to make a home safe for those with Alzheimer's.

CLINICAL TRIALS

Clinical trials are happening all over the country. As an example, go to the University of California San Diego website at
http://health.ucsd.edu/specialties/neuro/adrc/
Jan was evaluated for a clinical trial at the University of Washington
http://depts.washington.edu/adrcweb/
There is also a national database of trials at:
http://clinicaltrials.gov

NURSING HOMES AND ASSISTED LIVING

Try the American Association of Homes and Services for the Aging at
www.aahsa.org
, the Assisted Living Federation of America at
www.alfa.org
, the Consumer Consortium on Assisted Living at
www.ccal.org
, and the American Health Care Association at
www.ahca.org

LIFE AND DYING

Don't ignore the legal issues surrounding this kind of diagnosis. Update your will or trust. Get a Power of Attorney (POA) for legal and medical concerns. As The Disease gets worse, more of the decisions you once made together will be yours alone. Don't screw this up, or you will be very, very sorry. One place to find lawyers dealing with elder care issues is
www.naela.org

Second, face the hard fact that the person you love has a terminal illness. While she could still discuss these kinds of things, Jan and I should have talked about how we wanted to be cared for as life ends. We should have written our wishes down in a kind of essay. Then I would have had her guidance. That would also have given her family and friends a better understanding of what I was doing and why. Resources abound at the National Institutes of Health end of life site at
www.nlm.nih.gov/medlineplus/endoflifeissues.html

ONE LAST RESOURCE – YOU

A piece of advice earned with bitterness and tears: The Disease twists and wrenches the brain. Prepare for having everything organized and then be tossed aside by changes neither you, nor all the experts, could predict. Be flexible and make your motto these words from John Lennon:

“Life is what happens while you're busy making other plans.”