'Jan's Story' Of Losing A Love To Alzheimer's
SCOTT SIMON, host:
This is WEEKEND EDITION from NPR News. Im Scott Simon.
First and last, Barry Peterson's new book is a love story, but the story of a love that had to change to endure. His wife, Jan, was the kind spirited, effervescent person who made strangers smile. They had full, interesting lives blessed with children, friends and travel. After 20 years of marriage, when Jan was just in her mid-50s, she was diagnosed with early onset Alzheimer's disease.
The life they had built began to crack. The love began to change from the affection and intimacy of two adults to patient and caregiver. And finally, Barry Peterson had to figure out to fulfill his pledge of in sickness and in health to the woman he loved without dashing his life for himself and his family.
Mr. Peterson is a veteran and acclaimed correspondent for CBS News, who's reported on vexing human stories from around the world. Now he's written his own, "Jan's Story: Love Lost to the Long Goodbye of Alzheimer's."
Barry Peterson joins us from us from New York. Thanks so much for being with us.
Mr. BARRY PETERSON (Author, "Jan's Story: Love Lost to the Long Goodbye of Alzheimer's"): Thank you for having me.
SIMON: And did you make a point of calling it "Jan's Story"?
Mr. PETERSON: I did. People have asked why I wrote the book and I say to them one of the reasons is I would not let this woman, this magnificent, vivacious, wonderful woman just get lost in the midst of Alzheimer's. I couldnt let her life end that way. And if there is a way to honor her, then I dearly hope this is it.
SIMON: In this book, looking back on it, before she was diagnosed, you think you might have recognized signs even a decade before.
Mr. PETERSON: The researchers say that Alzheimer's can start 20 - more than 20 years before it can be diagnosed. And I think with Jan it started when she was 40 years old - this is 1990. She was not formally diagnosed until 2005, thats 15 years later. But we could see the signs.
I didnt want to see the signs but other people saw them. The subtle changes. Her ambition started to wane, she really didnt want to go out of the house very much, and of course memory lapses. I mean at times, and now permanently, but at times she'd forget who I was. We'd be together and she'd say: I saw a picture of you in the other room - do you live in this apartment? And then if you just gave her a little time, in a little bit of time it would kind of come back.
But the cruelty of that I cannot describe, cause all you hold onto, all you clutch is the coming back part: It's not as bad as I thought, she's getting better, something good is happening. And then she goes away, except each time a little farther away.
SIMON: You were her caregiver for a while, tried to be.
Mr. PETERSON: Yes. I took care of her alone as long as I could. We were living in both Tokyo and Beijing. We would go back and forth. The travel was a problem. Im a working journalist. I traveled a lot. Brought in a live-in caregiver, a retired nurse from Washington State, who was marvelous.
I thought with the live-in caregiver I'd solved the problem for like another two or three years. We lasted eight months. And this is perhaps the worst part and the most difficult part of this for me.
The woman who was the caregiver, the nurse who was monitoring both of us, said: Jan is always going to have someone to look out for her; the caregiver has no one to look out for the caregiver. And then she looked me in the eyes and said: You are going down.
My health was beginning to suffer. I almost literally walked off a cliff. I dont mean like - I thought about walking off a cliff. I mean I was in a house that was next to a cliff and I thought: This is a way to end the pain, was to walk off a cliff.
You know, I was smart enough to know that in many cases caregivers die before the person with the disease. But I thought that was, you know, people in their 80s and 90s, not Barry the journalist. But Barry the journalist had to realize that this disease was taking me down with it, and that I had to put Jan into an assisted living facility and that that would be the end of Barry and Jan.
SIMON: Some of her friends are angry at you. Your good enough to share some of those phone calls and letters in the book.
Mr. PETERSON: They felt that I had abandoned her. One friend said: If I ever really loved Jan, I would have quit my job, moved to Seattle where we'd placed her in this facility, I'd go see her every day and I would be there for as many minutes as Jan had left, when she could still have some sense of who I was.
I've decided that Im going to accept that. And I got to tell you, it hurt a lot. I thought I was doing something really good to care for her, so that hurt.
But I decided these people said that because, like me, they love Jan. And they could look at me and I could personify their anger. I could personify what this disease had done to her. And so I take this now as a measure of their affection for Jan. Let them be angry with me. Let them say I did everything wrong. To me it just means they cared for her so much, and that I will hold on to.
SIMON: And how's Jan doing?
Mr. PETERSEN: You know, it's hard to know. It goes from visit to visit. I must tell you that when I go to see her, sometimes she recognizes that I'm a person of importance. She doesn't know who I am. She doesn't know I'm Barry. There's a different Barry who lives in her mind and that's from her memories from a long time ago. But she recognizes I'm someone important.
And I got to tell you, there was a moment a couple of visits ago - I came to see her. She's, like, oh, you know, she sees(ph) me and we talked for a minute, and she looked over and she said, Will you marry me? And it was like the sweetest thing that she could've said. You know, we've been married for many, many years. I don't know how in the world you react to that.
I know that when I was done with the visit and went outside and had to think about this, you know, I wept, because it was such a sweet thing for her to find somewhere in what is left of her memory the sense that I was the person, whoever that person was, however she sees me with what's left of her mind, I was a person that she said, will you marry me? In every sense of the word, it was almost impossible to contemplate, and yet how lovely that she felt that.
SIMON: Barry, thanks so much.
Mr. PETERSEN: Thank you for having me, Scott.
SIMON: Barry Petersen. His new book, "Jan's Story." He spoke with us from New York.