Jan's Story (6 page)

“Passion and shame torment him, and rage is mingled with his grief.”
~Virgil, a Roman poet

For the one who becomes the Alzheimer's caregiver, there is often no training, no manual, and no experience. Firefighters are taught how to handle a hose long before they are allowed close to the danger of the real thing. Doctors spend years in classes and hospitals learning to diagnose and heal. Even journalists, despite what many may believe, study, learn, and hone their craft. When someone is diagnosed with cancer, there are specialists and hospitals and machines to fight back. The experts take over.

Not with The Disease. On a Monday we are ordinary people doing our jobs, raising our families, and fretting over the mortgages or the kids. Then on a Tuesday, with no more warning than a doctor's diagnosis, we are recruited, without asking, into a job for which we have no preparation and facing sudden downward changes in our lives that we cannot predict.

Save for the rare person who might have some medical training, the rest of us are amateurs in this new calling; ordinary people whose sole qualifications are geography and love—we are the nearest and dearest to the person with The Disease.

And we are many; an estimated ten million people are unpaid caregivers for those five million with Alzheimer's. Were we paid, says a study by the Alzheimer's Association, we would have earned about $94 billion for our time and effort. And when the number of Alzheimer's sufferers triples to an estimated sixteen million by about 2050, the number of unpaid caregivers will hit 32 million.

Add it up … almost fifty million people will be overcome by this disease. So many, in fact, that you will surely know someone, or your family will include one. Or you may be the one with the diagnosis, or with the caregiver's responsibility. Such are the odds.

My attempt at mastering this new profession unfolded in three acts. The first act was taking care of Jan by myself. The second was hiring a live-in caregiver. The third was moving her into an assisted living facility in the United States—on the other side of the Pacific Ocean from our life in Asia. The first almost cost me my job, the second almost cost me my health, and the third all but ended my sanity.

In our first years together, Jan and I were partners in everyday life. She and I both worked and earned money. I focused on the job with the full-time salary, and she worked part-time and did all of the things, like paying the bills, which kept our household running. She made dinner, and I bought wine on the way home.

Life is a series of ordinary moments shared, and the pleasure is in that sharing. We talked endlessly, planning things such as where to make a real estate investment or whom to call for a dinner date. Sometimes the evening conversation was just one of us letting off steam from a bad day. Sharing it made it easier.

We went to bed contented, knowing that we would wake up and make coffee and have breakfast and start another day sharing our lives. There was a solace in that, a trust that as long as we were together we could shield each other from the worst the world outside could inflict. Being together was the core of our strength. The Disease attacked the core. That's what it does. That is its strategy.

And one of its main targets is the frontal lobes of the brain.

     
The frontal lobes are considered our emotional control center and home to our personality. There is no other part of the brain where lesions (an injury to the brain, in this case caused by the disease) can cause such a wide variety of symptom … The frontal lobes are involved in motor function, problem solving, spontaneity, memory, language, initiation, judgment, impulse control, and social and sexual behavior. (Courtesy of the website for the Center for Neuro Skills -
www.neuroskills.com/tbi/bfrontal.shtml
)

The diagnosis brought focus to what I was seeing. I knew The Disease would change us, but how? And how much? As a person who loves history, the first months after the diagnosis brought a moment of world history to mind. In September, 1939, the Germans invaded Poland triggering declarations of war. European alliances were forged, weapons were manufactured and sides chosen … but there was no major fighting.

The British called these months the “Phony War,” an uneasy period that lasted until May of 1940, when German troops marched into Belgium, the Netherlands, and Luxembourg and the fighting was suddenly, and terribly, on.

In that brief calm, no one could imagine how devastating World War II would become … beautiful and vibrant cities bombed to ruins, the unspeakable concentration camps, developing and dropping the atomic bomb. Instead, in that brief period, life went on as before, and one could almost hope that maybe what Winston Churchill called “The Gathering Storm,” would go away.

It was like that for me, a hope that grew as the shock of the diagnosis sank into an uneasy calm when nothing dramatic happened right away. This was the true beginning of denial, and I deluded myself into thinking that maybe I'd overestimated how bad this would be, so ordinary were those first immediate months.

Jan could do all the things she had done before the diagnosis … go to the grocery store in Tokyo, work out in the gym if we were at the hotel in Beijing. She went out of the apartments less in both cities, of course, and I called home a bit more often checking up on her. But there was a sense of normalcy, of life going on as before.

We had dinner when I wasn't traveling. We'd talk about the day before going into the other room to watch a movie— preferably a comedy since I wanted every evening to be upbeat. Life continued in a soothing way even though it was a constantly altering rhythm as she slipped a touch here or there. I would notice it, she wouldn't. I kept it to myself and adjusted.

I found myself making more and more decisions, and eventually I was making every decision for both of us, from organizing the next three-city visit to see family and friends in the US, to what we both might have as the main course for dinner.

Also ending was the shared responsibilities for keeping the house going. Our bank account swelled for a few months and I couldn't figure out why until the Tokyo landlord called and said Jan hadn't paid the rent for three months. I took over the checkbook and paid all the bills. Another shifted responsibility.

We put great faith in medicine in this day and age, and Jan decided that the pills and a positive attitude made the difference. I arranged for the pills, and the positive attitude flowed from deep within her spirit.

The first medication stalled The Disease for a while. When The Disease started making new inroads, we switched to another pill. Once again, it slowed the progression and for a while brought parts of Jan back. I schooled myself about the existing medications and was disheartened at their limitations. Depending on the patient, they only work for a while, if at all. In the beginning I was hypersensitive to stories about trials of new experimental medications. But like everything else about The Disease, the trials ended with failure after failure, and my interest and hope faded for a new breakthrough.

At first, I drew my ammunition from Jan's inborn optimism. If she believed we could beat The Disease, then I intended to believe with her, and it made me feel better. Sure, there were studies and terrifying statistics about Early Onset Alzheimer's Disease and how it caused dramatically shorter life spans. Alzheimer's can kill in anywhere from three to twenty years.

But Jan and I were determined not to be just another statistic. And with help from the pills, there were times when it almost felt like we were indeed winning, which I defined as keeping The Disease at bay. We wanted a cure, but we would settle for just freezing the deterioration so she could live out the rest of her life where she was. Frankly, we would settle for anything positive.

Reading about Alzheimer's also meant learning about caregiver stress, and how caregivers often die before the person with The Disease. I shrugged this off, thinking that this kind of mortality was more about elderly couples, about the eighty-year-old overwhelmed wife who dies from the stress and exhaustion of caring for her eighty-year-old husband. What I forgot was that caregiving was a new job that starts out feeling part-time and then grows to consume every hour you have, day and night, 24/7.

And like so many other Early Onset caregivers, I already had a day job that needed doing, and it was the one that paid my salary. I was on call day or night if a broadcast needed a story. Since Asia is on almost opposite time zones from New York, it meant that I had to get up at midnight or 2 a.m. to return to the office and write a script if someone in New York needed something. And if we were covering a breaking story, it usually meant I would stay up through most of the night, grab what hours of sleep I could, and keep going.

In 1997, we rushed to Guam to cover the story about a Korean Airlines 747 that slammed into a hillside on approach to the airport. I put in more than eighty hours straight without sleep, doing stories for the morning show, the Evening News, radio, and even a piece for
48-Hours
. But it wasn't only the stories that needed to be covered. With cutbacks in network news, my Asia job was harder than ever. When I was first posted in Tokyo in 1986, there were four CBS News correspondents and bureaus in Asia: Tokyo, Beijing, Hong Kong and Bangkok. When I came back in 1995, Hong Kong, and Bangkok were long since closed, and the office in Beijing now consisted of just a camera crew. From four correspondents, we were down to one. Me.

I knew it would be more challenging, and I talked with Jan before we decided on the move. We both felt this was an opportunity for me to cover stories that were done by other correspondents last time around. It could also mean more time away from home.

For her, it was a fair tradeoff. Maybe I'd be on a few more airplanes, but those airplanes were not taking me to Sarajevo or Baghdad. Jan would happily exchange a few more nights alone with me on the road someplace in Asia for those nights of fear knowing I was someplace where I could get hurt … or worse.

In 2002 the job took on a new demand. Until then I was based primarily in Tokyo, but the Chinese insisted that we pay more attention to China or lose our journalist accreditation. So CBS rented a serviced one-bedroom furnished apartment in Beijing, and Jan and I started a two-city life. I would be in Beijing anywhere from a week to months at a time, depending on stories that needed doing, and usually with little or no warning about when we needed to change cities.

And like any foreign correspondent, when I went to work in Tokyo or Beijing in the morning, I had no way of knowing in what city or country I would be sleeping that night. An earthquake, a plane crash, a story that caught some executive producer's eye drove my professional life. I carried a passport with me everywhere because sometimes the call would come and there was barely enough time to get to the airport. I was expected and paid for making it onto that flight and to that story.

The time away from Jan could be a few days. But when I was sent to Pakistan in late 2001 and ended up covering the kidnapping of Wall Street Journal reporter Daniel Pearl, the assignment stretched into two months. Pearl was executed by his kidnappers in Karachi, Pakistan, on February 1, 2002.

I wanted to make it up to her, to thank her for being home by herself and living on phone calls from me and not on the touch and holding that we both craved from each other. And I needed to somehow reassure her that I was okay, even after covering the story of another journalist who was, in the end, murdered. We needed time alone to celebrate being alive.

I called our travel agent and booked her on a plane to Paris where I met her. We walked and shopped and ate at wonderful restaurants, as we had the first time we went during the first months of our marriage. This was before the formal diagnosis, before everything was colored by The Disease, and that is why it is such a good and fond memory for me.

But even being home offered no real respite from the growing demands of work. The pressure to get on the air never ended, especially in Tokyo. A high level of story production was the only way we could justify the expense of a bureau in one of the world's most expensive cities. I felt that the jobs of the others in the office—the field producer, the Japanese staff, the cameraman, the editor—rested, in large part, in my hands. If the producer and I came up with stories that were getting on the air, we made everyone look good. If the story count slipped, questions from the home office would naturally follow; why was the company spending a lot and getting back only a little. More than ever, it was critical to keep ourselves looking good.

It essentially meant my day never ended. If there was a good story on a Sunday, then we damn well wanted to get on the air, so we worked on Sunday. They call journalism the first draft of history. I would go, see events, talk to people, and then condense it into an
Evening News
report.

One Sunday morning, about 1 a.m., I got called into the office to write a story concerning Asia, but when I got there I was unable to focus, unable to draw together the various facts needed for the script, or organize in my mind the video that was available for me to use in the story. This was my job, and I'd failed. I was on the phone with the executive producer, an old friend, and I started crying and saying that I just didn't have the energy. I was simply exhausted. I didn't see it then, and wouldn't for a long time, but this was the first symptom of the toll that being a caretaker was taking on me. What fool thinks he can do it all, the work and the caregiving, when neither really end? That fool was … me.

The producer in New York who wanted the story that night was understanding and gracious and said the story wasn't that important. She told me to go home and try to sleep.

But rather than going home, I curled up on the floor and fell asleep next to the phone, in case she changed her mind. The incident shook me. How had I come to this? As I lay on the floor, I wondered what my bosses would think if they heard about this night. Wasn't this dangerous behavior if I wanted to keep working? One simple answer was that they would think I could no longer do my job. This would not end well for me.