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.”
TIMELINE
Feb 19, 2009 a week ahead of a visit by me to Jan E-mail from Caron, Jan's mother
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
18
“The way to love anything is to realize that it might be lost.”
~C.K. Chesterton
The Last Goodbye?
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 t
his 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.
TIMELINE
March, 2009 after my visit
E-mail from Caron, Jan's mother
Barry, I am so sad about the whole thing, but we have to be honest about where Jan is going, which is nowhere, and you still have lots of life left. I am hopeful that you will find a woman with whom you can share your life. It would be good for you, and couldn't possibly hurt Jan, who would never know or understand.
This progression from Jan to someone else in your life might take a few years, but nevertheless, it could happen, and I pray it does. I also hope that your taking care of her can continue, as we would all be lost without it.
19
“I have ever since (my wife's death) seemed to myself broken off from mankind; a kind of solitary wanderer in the wild of life, without any direction, or fixed point of view: a gloomy gazer on the world to which I have little relation”
~Samuel Johnson
The Guilt of Love That May Someday Be
We have so many measures of time; hours, days, years. Look at a clock and you can know, with certainty, where you are in time with the rest of the world. It is exact.
With Jan, The Disease decided the timing of change, the pace of her departure, and it will decide when she will reach the final destination. So when people suggested that I consider opening myself and my life to include someone else, there was no timetable for how long I had been without Jan, and no timetable for when I might begin again, if that was my decision. It reminded me of the unspoken rule The Disease taught me: When there is no rule, make one up as best you can.
Jan's mom, in her extraordinary e-mail, gave me permission to choose what was next in my life, but with a thought that it may be years before this happens. I had a similar, private thought that I wanted to scream to the world: It has already been years! And I don't even know how many.
A lot of people started their clocks on an “acceptable” separation from Jan as May, 2008, when I placed her in the assisted living facility and then returned alone to Asia to complete my CBS News contract for covering Asia until it ended in the fall of 2009. The May separation was clean, neat and there was a clear physical break.
And it was wrong.
The intimacy was gone years before that benchmark, long enough ago that I couldn't remember. And how many years had it been since I lost Jan as a friend and wife and partner in a marriage, to be replaced by someone who needed me primarily as a caregiver?
When Diane suggested it was time to move Jan into assisted living, my first reaction was relief. Could the never-ending days of caregiving finally be over? Could the years of exhaustion and Sisyphus-like pushing against The Disease be finished, the struggle that would end in defeat no matter what I did? And so when these few close friends suggested that I find someone else, there was also an odd sense of relief, that there could be life with someone new. For so long, I hadn't considered life beyond what The Disease had stolen.
And then came a loud, insistent banging at the door and I opened it and in walked guilt. Guilt is a wide-ranging, hardworking thing. It twists decisions that we may instinctively know are right and makes them feel wrong. It hobbles our efforts at positive steps, and most days it puts in a few hours of overtime and stops us from taking those steps.
Guilt asked the key question: Was I a bad person for wanting love back in my life? It was not about sex. It was about no longer having a friend and partner and companion, no longer having someone to share the day with. Just thinking about it seemed a violation of what Jan and I had once been, a sin against our togetherness. After all, she couldn't help what was happening to her.
And in time, I realized that I couldn't help that I wanted a chance to love again. I didn't run out to find another woman. Instead, I ran out to find therapists to help me stop thinking or wanting this. There were psychologists, a hypnotherapist, and the psychiatrist, and phone calls to others who were on this same journey and could understand the guilt. And along the way I shared the tears and the terror that I felt I was a bad person because I was thinking about and wanting this.
And yet, their advice was remarkably similar. Leave the guilt behind. They suggested in their various ways that I had to decide this for myself, to focus on my own timing, and accept that my being alone had stretched across years even when Jan and I were together. And more than one warned me to brace myself for those who would not understand, those who would judge.
The professionals suggested that I try a new way of thinking; that this was not about Jan, it was about my life. I had not caused Jan's disease, I could not delay it, ease it, reverse it, stop it. They were wise, but this was not what I was asking of them. I wanted them to help me st
op these thoughts about filling the emptiness with someone else. I found myself wandering into churches. I wasn't seeking God but absolution. A cleansing of my sin, because it seemed a sin, this wanting to be held again, wanting to feel the joy of holding someone I loved, wanting to bring pleasure by making someone else laugh.
Wanting to laugh.
For the first time since that night at Jan's apartment, that night I believed we would be together for the rest of our lives, I had to consider taking her out of my life equation and going it alone. Do I listen to my guilt, or to my gut? Whatever I did, there would be those who would accept and those who would accuse. I got a dose of this the hard way, a harsh rebuttal from one woman who stared at me and stated bluntly that I was “trolling for women.”
I understand the sentiment. There were many who wanted an emotional death for me as slow and final and lonely as Jan's. For a time, I wanted the same fate. And yet, I did not think Jan would have accepted this from me. If loving her caused me to follow her into oblivion, it would have saddened her beyond measure. I can say, with faith, that she loved me more than that. And I, her. Had it been different, had I been the one with The Disease, I would never want her sucked into this darkness to remain there forever.
So fighting back took on a new resolve: I would not surrender to The Disease. Jan's life had always been about laughter and smiles, optimism and vibrancy, and about the sheer joy of living. This is the part of her that I now needed to honor. Friends saw this first, and in the seeing, they helped show me the way.
TIMELINE
March 30, 2009
E-mail from Amy Bickers, a long time friend
Dear Barry, I have wondered about this issue of you and relationships for a long time. You need love in your life. I think you should follow your heart. Jan will always be special to you and no one will ever replace her. But if she was sentient, she would want you to feel loved. You have my blessings and warm wishes and you should move forward.
Jan's Story Page 17