Jan's Story

by Barry Petersen

  “We entered the house. Peabody boinged through the doorway, skidded helter skelter across your brand new laminate floor, tumbled to an uncontrolled stop in front of his human hosts, and peed on the Pergo floor. I had one of those infinite moments of mortification. I looked at Jan, whom I knew to be a neatnik. On a detailed scale of unwanted introductions to my pet, this would occupy the penultimate rung.

  “Jan threw her blonde head back and laughed. I think she laughed for about five minutes, or however long it took for my heart to resume its regular rhythm. Soon afterward, Peabody was back outside, boinging with abandon along the bluff overlooking the Pacific, at the back of your house. It seemed he might take one great, happy bounce over the bluff and into the ocean, but he managed to stay on land. As I recall, you and Jan watched and seemed to genuinely enjoy the show.

  “It was Jan who set that tone and saved the day. What's a little puddle compared to such a striking demonstration of the simple joy of living?”

  Walking Into Oblivion: Stage Four

  A careful medical interview detects clear-cut deficiencies … decreased knowledge of recent occasions or current events; impaired ability to perform challenging mental arithmetic—for example, to count backward from 75 by 7s; decreased capacity to perform complex tasks, such as planning dinner for guests, paying bills and managing finances; reduced memory of personal history; the affected individual may seem subdued and withdrawn, especially in socially or mentally challenging situations. (Seven Stages of Alzheimer's Disease from www.alz.org, the Alzheimer's Association)

  There was another slow but steady change … Jan was losing interest in meeting new people. When we moved back to Tokyo in 1995, the list of friends started out long, but in a few years ended at almost zero. Part of this was living overseas. Most journalists and business people are sent to a foreign posting for two or maybe three years. We made friends with other new journalists who, like us, had just moved to Tokyo.

  Then they moved on, as did the neighbors in the apartment building who were our buddies. In two to three years almost all had left. But we stayed. As fresh faces showed up, it was harder for us to connect. We were not the new people dealing with a strange new place. We had dealt, thank you, and our interests had moved on. Our excitement quotient for exploring the usual first timer “must-see” temples and tourist sites was nil.

  A few friends with a deeper investment in Japan stayed on for several years, yet in time they all finally left. It was a natural process. We were the odd ones for staying. And it seemed almost natural to run out of the energy needed for investing in new friendships. The next group of new arrivals, like the last, would just move away. Jan and I were not alone in this. Others who spent extended time overseas have had much the same experience.

  And here is what I didn't want to see as it unfolded in front of me; Jan was a naturally outgoing and friendly person, well-liked by everyone around her. Yet despite that, she did not object or even react as our social life began to shrink. For a while, we lived next to the Tokyo American Club, a place with a gym, swimming pool, restaurants and numerous social groups. I asked Jan if she wanted to join the women's groups that sponsored day-trips. This would be an easy way to reach out and find new people who might become new friends.

  No, she said, she wasn't interested. I accepted this and didn't push. After all, we were doing okay. I thought this was just us being self-sufficient, that we were enough for each other in life. I thought of it as an affirmation of our love.

  In fact, it was not being self-sufficient at all. It was isolation closing in on us as Jan's brain ever so slowly closed down. Through these years we would return to the US to vacation at our home in northern California as often as we could. Jan loved being there.

  And our friends there noticed, far sooner than I, that Jan's joy of being with other people had taken a slow and sad turn. Mary Alinder is the former assistant and biographer of Ansel Adams and one of the few people I know who considers the late chef and author Julia Child a personal inspiration, except that Mary can cook as creatively as Julia ever did. Dinners at her home are an event. Her husband, Jim, is a much-published photographer whose subjects vary greatly from panoramas of Paris to the landscape of California's north coast. The Alinder Gallery in Gualala, CA, sells fine, rare photographs, specializing in the work of Ansel Adams.

  When I asked Mary and Jim what they saw in the last few years, this is what they shared:

  “Jan defined the terms ‘sparkling’ and ‘vivacious,’ and she was certainly whip-crack smart, but she had never been one to dominate the conversation, rather adding a rare, appropriate comment that enriched that moment. Since we only saw you and Jan every few months when you came to your Sea Ranch home on vacation, one would think we could better sense the progress of her disease. Perhaps it was her radiant smile that fooled us for over a year. There came a time at one evening's end when we looked at each other and said, ‘Did you hear what Jan said? It didn't make sense,’ dismissing her off-the-wall remarks to mishearing.

  “Her wonderful grin began to look pasted on. She spoke out with increasing rarity and sometimes what she uttered was spot on, but that became rarer, and her silences lengthened and deepened. She concentrated on the activity and banter about her with great focus, trying so desperately to hang on to the present and the reality of what was happening.

  “It was an exhausting effort that lasted for shorter and shorter periods but she fought ferociously to be ‘normal’ for those times. We treasured those moments. We wish we had better honored her strength and determination, but we did not want to shatter the version of Jan that she heroically constructed so that she still could be one of us. The last time we saw Jan, she had become her own shadow.”

  6

  “Passion and shame torment him, and rage is mingled with his grief.”

  ~Virgil, a Roman poet

  The Amateur Called to Caregiving

  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 wor
k 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.