Jan's Story (15 page)

And it was bad enough that Jan and I were losing our everyday life together. Yes, life with Jan in Asia was difficult and getting worse fast, but at least it included her being there with me. Now, for her good, I had to give her up to an assisted living facility. Was this not love, was this not sacrifice? Was this not enough, dammit? Can't I be left alone with my private agony? Can you understand, and not judge me?

The disapproval and anger scratched across already-bleeding nerves. Over and over, I checked back with the people I had consulted and trusted, and they assured me that putting Jan into the facility was exactly what she needed at this stage. But I was already feeling despair, and adding to the pain were the accusations that I was abandoning her, or I had done something to purposely hurt her. That swelled my despondency into something I could physically feel in my gut.

And inside me, there was another storm of emotion forming; without Jan, why keep going? Why? It is a volatile and dangerous question. And when there seems no purpose and no destination in life, there looms a dark place where there is an answer, a frightening but calmly appealing answer. And I thought perhaps in that darkness I would find, if not solace, an end to the pain.

Dear All,

For a long time I have talked about losing Jan. Now, Jan is losing me. During my visit with her last week there were several moments, I don't know how many, when she did not know who I was while I was actually with her. And if I left for an hour or so, she forgot I was even in town seeing her. And after I left to visit my daughters living in Denver, she was angry that I never came to see her. She had no memory of my visit.

People who are wise and more experienced than I say this is part of the progression of The Disease. And, of course, they are right. But it leaves my soul in ashes. I don't know what to write because I don't know what to think or feel. Throughout all of our married togetherness, I proudly protected and nurtured Jan, and she did the same for me. There is not a “thing” that she wanted for us that I didn't get for her and it enriched our lives, and not a pain or torment that I suffered on stories or in life that she could not soothe and finally heal when I could come home to her.

When I married Jan I knew that I would never be alone, and I vowed that she would never be without me watching over her. Now there she is, still sparkling as you all remember her, yet increasingly unable to speak sentences that make any sense and leaving us for some other place.

And how do I live with a loneliness made worse because of what we once were? I am drifting without her. Drifting to what or where, I do not know. There is a sense that men have about protecting the people they most love. My list is pretty short … Jan, my two daughters, my granddaughter. But I could not protect Jan and now cannot stop or even slow what is going on. I feel powerless and helpless and, yes, finally, useless.

There are moments when I feel such intense failure that I simply freeze in place and wonder about just getting up and going on. Why bother? If I couldn't take care of Jan, what really was my life all about? And worse, do I really want the “rest of my life” like this? The rational, intellectual part of all of us says this is not to be taken so personally. I didn't cause this, and I am not making it worse.

But the heart of me feels that she depended on me to care and protect her, and I failed. And as I watch her slip away, there is no atonement and no forgiveness for this failure.

Here are a few glimpses from our visit. When I was in her apartment with the TV on, I would find her staring at me. This seemed odd to me, until other events helped me realize that these may have been moments when she was trying to place me.

She was concerned one night about my coming back to the assisted living facility because having a strange man in her apartment might be viewed as a bit … racy?

As I write this, I am sitting in our house in northern California. Everywhere I look inside there is Jan, in the paintings or art she picked, in the pink walls that soothe when you sit here. She drove almost two hours each way to the paint dealer, three or four times, before she found the exact mix of color she wanted for this house. They actually saved the mix formula and filed it for future reference under “Jan's Pink.”

Outside the house, it is a winter's day. There is heavy mist and fog. I can see waves close to the house, but as you look far away the world is nothingness. Out there is the unknown, the abyss. Is that where I will soon be without her?

~ Barry

“If you do not change direction, you may end up where you are heading.”
~Lao-Tzu

The nights were the worst.

Sometimes, in that confusion between asleep and awake, I would sense her next to me. I could hear her breathing and actually feel her in the bed, feel her on the mattress next to me. Then I would wake up and she was gone and I would know, again, that I was alone.

I would tell myself that I will be alone from now on. It is like some lesson that I already knew but my mind keeps teaching and reminding me. I didn't understand why.

I had been alone all of my life—children of alcoholics often feel like that—until the moment Jan and I decided we were to be together. And in that moment, and because of her, the feeling of being alone went away. With Jan in my life I did not have to live in some separate place. Could I shout this joy to anyone who would listen, could I celebrate it, could I treasure the moments and savor each new day?

And then over the years doctors and friends and even my own daughters tried to show me that I was losing her. Could I stay sane? But the real question was, why bother? I knew I was in trouble when the therapist in Beijing who had helped me with Post Traumatic Stress Disorder gave me his vacation contact phone number and told me to call if needed. We had been talking about suicide. Mine.

I had written the November update which alarmed family and friends. Some tried calling the night they got it, convinced that I was preparing to kill myself. Perhaps they were right. I was finally and hopelessly lost in the darkest part of a valley, a deep abyss, a place that offers no good reason to go on. In this valley, in this blinding blackness, all you can see is what is gone. And you only see that in your memories.

Have not each of us wandered, from time to time, into that valley? When you look up, there is no light. The future has no shape, no reality. What alarmed the therapist in Beijing was my calm and casual description of ways I planned my demise. There was the slitting wrist in the bathtub plan, with the hot water somehow soothing the pain. There was jumping, of course. This would be easy because I lived in Tokyo on the 26
^th
floor of a building with two balconies. I just had to step over the railing. It seemed messy, I explained to him, and really not for me. And how awful if you changed your mind on the way down. What then?

I said that at times, when holding a knife and slicing something, I considered how easy it would be to use that on myself and stab out, cut out the pain. It was the pain, not my life that I wanted to end. But they were twisted together in my body.

Because I lived in China and Japan, I did not have access to guns. There were empty, endless nights when I wished I had one. If there had been a gun in the apartment, I would have gotten it, stared at it, considered how fast and efficiently it would make the pain go away. One wonders what might have happened.

What do you ponder when you stand on the precipice? I felt that I would never again have what I had lost, that open and caring and unquestioned love she gave me. I got lucky, once. That was once more than a lot of people who I know. And what if the future stretched like it felt at that moment, from one dark restless pointless night to another? How many nights or days could I endure? Because, if I didn't actually kill myself, I would surely go insane. Which was better … or worse?

I would imagine myself being insane. One day they would miss me at work and someone would finally break into the apartment and I would be crouched in a corner, holding myself tightly. Do not touch me, do not help me, I would yell. Leave. Now! This is a future worth living? Dissolving into insanity? I didn't think so.

And then there was the wondering if I could have done anything else to have helped Jan. For years I read books and articles on Early Onset Alzheimer's Disease. Lots of people have lots of ideas about how and when it starts. No one knows for sure. I knew Jan's family had no known background of Alzheimer's. But did I do something; did I move her somewhere like Moscow with a toxic environment? And if not that, how about missing several years of symptoms when I could have done … what?

There is selfishness to suicide. The appeal is dimmed by the damage left behind. My daughters would cry. It would hurt them and they would wonder for years why I had done it. Hurting them is something I was never able to do. It is funny how a slender thread like that can pull you back. Just a tug, really, something on the edge of my mind saying that it would hurt the ones left behind, the ones I also care for, the innocents. And this time I would be the one hurting the innocents.

There was no moment of sudden wisdom, no jumping up and down and shouting that I was all for life. Had there been a moment like that, I wouldn't have trusted it. It was a slower, harder, inch-by-inch crawl back. I got through today, I did my job and I went home. I just had to do it again, tomorrow. Some days, most days, I would climb into bed and put a pillow over my eyes to shut out the light and the noise and find some comfort in the calm of darkness and silence.

There is no way to know if others saw any of this in me. I would like to think that they didn't because this seemed too raw, too human. I was falling to the bottom and trying to find my way back. And was it all the way back? No. Hidden underground were the landmines waiting for me, hiding in the days ahead. This I didn't know and could not anticipate. The Disease delights in agonies that devastate without warning. As it reached deeper into Jan's mind, erasing ever more parts of her, it reached into my gut and twisted sharp and hard.

And surely it couldn't get worse. Surely, The Disease would show some kind of mercy?

     
This is the final stage … individuals lose the ability to respond to their environment, the ability to speak and, ultimately, the ability to control movement … frequently individuals lose their capacity for recognizable speech, although words or phrases may occasionally be uttered … individuals need help with eating and toileting and there is general incontinence of urine … individuals lose the ability to walk without assistance, then the ability to sit without support, the ability to smile, and the ability to hold their head up. Reflexes become abnormal and muscles grow rigid. Swallowing is impaired. (Seven Stages of Alzheimer's Disease from
www.alz.org
, the Alzheimer's Association)

As events moved ever faster and ever more beyond my control, I stopped and thought about what to do in the years ahead. I thought about the final stage. Even then it was hard to use that word … death.

It left me feeling the need to prepare for this last battle, to finally get one damn step ahead of The Disease. For once I was making contingency plans, or at least having contingency thoughts. I began wondering if the best course would be leaving my job and moving back to the US, taking Jan out of assisted living so we could live together again, and I would become her full-time caregiver. Who better?

Leaving my job would eliminate the stress and pressure from work and free me up for full-time caregiving, although it would also eliminate my salary. No one gets paid for staying home as a caregiver to the one you love. Listen to the laughter when you try that claim on the insurance company.

I would need to make the money part work if I didn't have my current job. Bills from mortgages to credit cards to heating the house don't evaporate because The Disease has come calling. I could do it if I just sold things. It could all go. And really, I thought, how much did I need to make her happy and give us a good life? A comfortable place to live, some wine, and sunsets would be enough. I could be there for her during the day and with her through the night.

And as I debated with myself about ending my career, that in itself became a new kind of denial; turning away from what was coming.

I was making a plan that had little to do with reality, because the last stage was the reality I would not face. So, I thought in the midst of this denial, if I upended what was left of my life and devoted myself to Jan, maybe there would be no last stage.

If I gave full-time to the war against The Disease, focused every part of myself and my energy, took Jan for long walks to keep her brain stimulated and kept her happy by just being with me because she was always happy when she was with me, then maybe I could finally make a difference and we could stop The Disease and I never have to face the last stage.

I picked up the phone and called a friend. Richard Leibner of NS Bienstock has also been my agent since my first days at CBS News and has carefully guided my career. I told him I was thinking of quitting and why I thought that would help Jan.

And he saw clearly what I didn't see at all. For a change, I listened. I was getting better at that. It was a late-night call for me from Tokyo and first thing in the morning for him in New York, as it always is when you are fourteen time zones away. I was really just thinking out loud about quitting.

And Richard said: “No.”

No? Why not quit, I said? Why not give myself over to taking care of Jan? She had always taken care of me, loved me. It was my turn to give back. Why not?

Gently, because he is a temperate but very clear speaking man, he put it like this: “You will need something for when Jan is gone. You need to keep this job because you will need something to do for after.”

With those words, he rocketed me from the misery of the present to the total loss coming, and that I would most likely still be alive after Jan passed through Stage Seven. Or be honest and call it after Jan's death caused by Early Onset Alzheimer's Disease.

He had ever so cautiously put into words what I would not even put into thought.

“ … .you will need something … for after.”

I apologized to Richard because I knew there were already tears in my eyes, and he graciously let me hang up. And then I sobbed. Jan was sick, she was leaving me, and we were losing to The Disease. My emotions that night were driven by panic and sadness and knowing that for the first time in my life I needed to begin thinking about what would be … after Jan.

I couldn't know how the years ahead would play out, and I didn't know what steps were yet to come. I hadn't done all that well to this point. I hadn't seen clearly that we would need a live-in caregiver and hadn't anticipated how that would ultimately fail and failure would force ever tougher decisions.

And if you had tried telling me what was coming that night, tried describing Jan's final stage, I would have swatted you away, fists flailing, trying to hurt you or push you away from me while tears streamed down my face. I couldn't hear it then, I wouldn't see it then. All I could see was that someday, Jan would be gone and I would be living alone in a place called “after.”

There is nothing special about me. I have no overwhelming courage to survive and go on in spite of it all. Other people are like that, not me. I have met them and told their stories and admired them, but that isn't me, except for one ember of rage in my soul that would not go out. If I gave up, The Disease would have won. The Disease would have taken us both down.

And I didn't realize that my own life was also literally at stake. If I were a betting man, sitting at that desk, crying after the phone call that night and wondering if I could go on, I would have said … even odds.

Maybe less.