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.