Jan's Story (16 page)

“It is not the strongest of the species that survives, nor the most intelligent that survives. It is the one that is the most adaptable to change.”
~Charles Darwin

I am not a solitary person. This despite the million hours I think I've spent flying to and from stories, and the thousand nights alone in hotel rooms. But I didn't feel alone in those days because I had Jan to call and talk about what was happening, or how the story was going, or when I might make the flight I liked best, the one heading home and back to her. With Jan in my life, solitude was gone. And, in my mind, it would be gone forever.

Forever now had a termination date and it was time to realize that I could, as the proverb goes, curse the darkness and decide that is where I would live.

Or I could light a candle.

It was not an obvious choice, and my first instinct was to stay in the darkness. There was sadness there but also safety. Jan was all I had ever needed when she was with me, and I thought that I could live on in those memories. And maybe that was the new forever, the memories that would not fade even as Jan did.

There was also denial here, of not seeing how much Jan was changing, how fast she was going away from me. I did not and I could not admit that someday she would be completely gone. That was the forever that I could not face.

And then around me, with compassion that awes me still, were others who could see more clearly. They came to these conversations with me as only old friends can, with the courage to say what I didn't want to hear. They knew the love Jan and I once had, and they understood its loss and they could see where I was eroding, where the sadness was hardening and might soon be all I had left. And they rejected that on my behalf.

But first they had to persuade me, and so they took the risk of showing me a way ahead. They took out a match and lit a candle and coaxed me out of the darkness before it consumed me.

By now I had stared down suicide. At times the thoughts would come back because it seemed such a simple solution, but each time with less force, less appeal. Even today, it sometimes whispers to me from the darkness. But surviving means moving forward. I have dealt with depression most of my adult life, and one form of relief is just moving, going for a walk, exercising, doing something physical that shakes up the body and gets the mind quite literally someplace else.

I can remember the first time a friend offered this kind of advice—to see a new way ahead. We were at lunch at a Manhattan restaurant. It was the fall of 2007. Mark Angelson and I first met when we both lived in London. He and his wife and daughters knew Jan. We went to their house for occasional festive events like Thanksgiving, when Americans tend to gather no matter where they are in the world. He was a successful lawyer who turned into an even more successful CEO and yet, he was a man with a gentle way and a quiet voice. He finds life fascinating and is one of the rare few who can find the lives of others equally fascinating and important.

And he took me aback with these words. “You need to find a woman.”

In my mind I protested. I am married to Jan. She is the woman. At that point, we still lived together in Asia, although by now with the caregiver.

“Keep it light.”

These were my immediate thoughts; being “light” was fair warning that I was in no way ready for deep emotions, commitment, or even love. It was too early, and I was dangerously vulnerable. But he knew that I needed some form of comfort now. It comes with being human. He was not really giving advice. He was offering permission, and he was the first to do so. I did not see what to him was clear; that being so alone was overtaking and defining my life and I was in misery without touch and caress.

I can remember his words, but not one of mine in reply. My emotions are what I recall. Could I do this? I did not leap to any moral high ground. I simply thought about going forward. Could I have this? Was this right? If the situation were reversed, would I want this for Jan? There is more to a man being with a woman than intimacy or ecstasy. There is life and vibrancy. He looked inside me and saw these feelings ebbing away.

After lunch I shook his hand and we said the things men say and I walked out into an easy New York autumn day carrying these thoughts. I was certain I could not do what he suggested, and yet there were others who echoed what Mark said. The ones who surprised me were old friends in northern California where I have a house. They have been happily married a long time. Together they created a very successful company. He was the man in front, who sold and created, and she was the partner in back, who sorted out books and plane flights and also created with him.

And they are still very much in love. You feel it when they are together, the kind of love only people who have been and built their lives together have. Yet they both, in the course of about five minutes, told me it was time to find someone new. This was a few months after I had placed Jan. From them, the couple who personified marriage and faithfulness, it was a shock. I had figured them for the “other side,” the ones who thought I had abandoned Jan and didn't love her enough because I was not with her. They were wiser than I, as they have always been.

Patty is nurturing and caring of those she loves. She was sweet but clear. “You need to find someone.” Her husband, Peter, is tall, blunt, and straightforward. He dominates any room he is in. He walked in, seconds after she finished, and just said it: “You should find someone.”

They had obviously talked about it—they used almost the same words—and I was touched, if knocked a bit off balance.

They said this from almost twenty years of friendship and affection as strong for Jan as for me. Many times Jan and I had sat at their dinner table, often with others, and laughed and had wine. We argued the state of the union and always, always parted sorry that the evening was over.

I suspected others believed what they did. It made me uncomfortable on a number of levels. First, it seemed disloyal to even consider finding someone else. Jan had done nothing wrong in developing The Disease. She still remembered that she had a husband named Barry, or at least had a husband, although it was harder for her to recognize me in person when I was with her, or to remember I was there if I left the room for even a few minutes.

Second, was this my leaving her? Or was it finally a recognition that she was leaving me, despite all I had tried and done? The Disease can warp all sense of reality, and perhaps the reality that I didn't want to face was that she was gone.

Finally, who could replace her?

I knew there could never be another Jan. Perhaps someone else, someone different, but I was still aching for what had been. I was sure there were several who might be willing to take Jan's place in my life. There are a lot more women in my age range searching for friendship and companionship than there are men. But then I had to wonder why would someone want to try? Why take on a man who already has a wife, even if she was gone in so many ways? This is complicated, unknown. And as time went on, it would stay complicated. Jan was still healthy and I was still going to take care of her. If there was to be a new relationship, it had to be about we three … Jan, me and a new woman in my life. That was a lot to ask of anyone.

I had not lost the weight from the years of stress, caregiving, and seeing Jan fade. I didn't much care how I dressed. I was emotionally drained. My oldest daughter, Emily, put it rather too bluntly, but honestly. “Dad, you're not really a great catch.” Not a confidence builder. Yet, there was truth in it.

Then there was something else, much harder, said to me by my Alzheimer's Buddy, Dick Lundgren. We had finished breakfast at a local hotel when I was visiting Jan in Bellevue. I was walking him to his car and we paused to chat in the parking lot. I asked him the question. “Will you ever have another relationship?”

He was quick to answer, and firm. “No.”

“Why?”

I could see pain in his face as he struggled for a moment to get the answer right. “Because I couldn't go through this again.”

“This” … was Alzheimer's. He had already sacrificed years fighting The Disease that had brought him, as he knew it would from the beginning, to being a man alone. There was no fight, no energy left inside him should he need to nurture and care for another woman who might, by some horrible coincidence, develop this kind of disease. What were the chances? Didn't matter, not the point. That it could happen was enough.

And yet, it didn't work out that way. Dick met someone and, in time, they discovered that they had much in common and, in time, they both realized that love can happen again. With courage, and one truly deep breath, he started over.

We, in this situation, are harbingers of what is coming upon society. There will be more and more who lose a loved one in mind and spirit while the body is still alive. That is because Alzheimer's cases are increasing. We are the Boomers, we live longer, and longer means more chances to develop Alzheimer's at fifty or sixty. Or seventy, the so-called new fifty.

Here is a prediction from the Alzheimer's Association: Today, every seventy seconds, someone in America develops Alzheimer's. By mid-century, someone will develop Alzheimer's every thirty-three seconds. So we, the survivors, don't know what we are, or how to act, or what the rules are.

Those who counseled me through the loneliness were people who saw what I couldn't. If asked, I said I was well and coping. I did all the right things to project the image of someone who is fine, and by the way, thanks for asking, just need to get over a few rough spots and work on that waistline, and isn't that just always the case.

I didn't know that even my own children saw it differently. Here is how Emily described me to someone else, “He's been very sad for a very long time now, longer than I think he even realizes.” I understood about the sad part. Okay, I wasn't hiding it well enough. What I didn't understand was the “longer than he realizes.”

Jan will be confused by your appearance (you are actually here, who are you? you seem familiar) but she will have mixed emotions. Barry, I hope you won't be too disappointed … be prepared for a beautiful person, still happy and kind, but insecure and worried. Sit close to her, hold hands, and there will be lots to talk about. Her friends at the assisted living facility will be so happy for her that you finally came.

Did you know that they elected her as Queen of Valentines Day? There are pictures at the facility about this. Bon Voyage!!

~Caron

“The way to love anything is to realize that it might be lost.”
~C.K. Chesterton

We were in the living room of her small apartment at the assisted living facility. Around her were the things I hoped would help her memories. I looked at the pictures nailed on her “Jan Pink” walls, like the framed pictures of Paris where we traveled early in our marriage when we were as close to broke as we could get without actually being bankrupt. Was it that long ago that we cashed in our airline miles for a free ride to Paris? The hotel was all of thirty dollars a night, including breakfast. We became happy experts in restaurants with wonderful food at very low prices. Nearby was a painting of old Hawaii that I'd commissioned an artist in China to make for her. Did she even remember Hawaii?

The couch and chair in her apartment were overstuffed and cozy and splashed with some of her favorite fabrics that we'd brought from Tokyo to spread across the furniture. The bright golds and rich crimsons were always her favorite.

I sat in the chair. We had finished dinner. Outside, the late February sun was setting, making the room cozy and warm. She walked over to me and leaned down, focusing on my eyes. “Don't forget me.”

Even now I can't tell if it was a plea that I keep her close. Or was she letting me go but asking that no matter where I went that I would bring our memories with me?

I once wrote about how Jan was so charming that she could get a fencepost to tell her its life story. But now I can't even ask her what she means because The Disease doesn't take questions, and she can no longer give answers.

She said it only once, looking at me. Her face showed no anger or sadness, or even love or affection. It was oddly blank, just her face, as if all her concentration was on getting those words correct and getting them out. Then she did something she rarely did anymore. She slid onto my lap. I put my arms around her and she relaxed against me, her head on my shoulder. For a while, there were no words.

I can cry now, as I write this. But I couldn't cry then. It would have upset her. And I didn't know … what did she mean? And how could she have this sudden moment of pure clarity? It was so important to her to tell me and had it been within my power, I would have given her anything.

If I just knew.

And then it got worse. She told me she wanted me to lie down in the bedroom, on the bed. At first, I thought she wanted me to rest, that she was worried about me because my day, which had begun in Tokyo when I got on the plane, was so long and was still going. So I went into the bedroom, fully dressed, and stretched out flat on the bed. She came in and stood on the other side of the bed and began taking off her clothes, and I wondered if she was getting ready to go to sleep. It was early, but she was now running on her own schedule. I waited, quiet, and as always, wondering and uncertain.

She didn't get into pajamas—odd, because she loves wearing red silk pajamas to bed. Instead, she kept undressing until she was naked and beautiful, soft and curved. Outside, the sun was gone and the room darkened.

She smoothed the covers and lay next to me, on my right side, and curled herself along my body. She had nothing on. Now I thought I knew what she needed, me to cuddle and hold her and stroke her and give her the comfort of our coming together, what we had shared so many times before in our love and our hunger to be close.

But I couldn't. I couldn't do this. I was afraid for me. It was the most selfish moment of my life, and it surprised me. If I gave her this now, I couldn't move on. This was the moment to decide. Is this what I must do to survive? To lie there, with clothes on, while she offers me her body … and not take it? There was no warning of this moment coming, no chance to discuss it with others. I had to decide and it had to be now.

She wanted to tell me why, but now the words are confused. It comes out like this: “I am flat and round. This is what I am.”

I thought then that I knew what she meant; that she was there, naked and open to me as she has always been from our beginning. She says something else that is gibberish, but in my memory, this is what I heard: “This is my body. This is me. This is everything I have and I offer it all to you.”

And I could not take it. Perhaps she wanted reassurance in our skin touching, perhaps there was some part of her that remembered our making love and she needed that. But I couldn't do this. Now, for the first time since our first kiss when my life began, I know I couldn't do this now or ever again.

In the twisted logic of The Disease, touching her, caressing her, would be somehow cruel of me. It is simply not allowed. She is defenseless and she needs care and protection. She is like a child, lonely and so often scared. And I am not her lover, I am her caretaker.

The first kiss was our first knowing that we were to be one. Now, in this darkened room, it was ending. Along the way there were a million kisses, a million nights of being together, or worse, being apart. It was never supposed to end at all, and now it ended like this.

I was still next to her for a while with no words. She got up and opened her closet and found her pajamas and put them on, first the top and then the bottoms. I got up and came around to her side of the bed to help her crawl in and pull up the covers and kiss her as I prepared to leave. Her eyes sought my face. Do you know who you are, I asked.

“My name is Jan.”

“Do you know who I am, darling?”

She looked at me, as softly as she always had, but she couldn't answer. She had lost me.