Jan's Story (10 page)

“Dare to reach out your hand into the darkness, to pull another hand into the light.”
~Norman B. Rice

On a lovely crisp October day in 2007, United Flight 876 from Seattle glided gently onto the runway at Tokyo's Narita Airport in mid-afternoon. It fulfilled the measure of what I consider a good flight—it was perfectly uneventful.

Jan and I had made this trip many times before. Only this time, it wasn't routine. This time we were not two. We were three because retired nurse Diane Malone came to Asia as our new live-in caregiver. I reached the point where I knew I could no longer leave Jan alone, even when I was at the office, and certainly not if I needed to travel somewhere for days (or weeks) on end. And travel without warning was a normal part of my job.

One big reason for full-time care was Jan's increased disorientation. She would rarely leave the hotel in Beijing, except with the “Jan Buddies” I hired on an occasional basis, so that wasn't a worry. But in Tokyo, she would still get into the cab by herself and tell the driver in Japanese how to take her to the grocery store several neighborhoods over that specialized in serving foreigners. And lately she began buying the same things over and over. We had enough bottled water in the pantry to float a Navy destroyer, but still more would be delivered after each shopping trip. I wondered how soon it would be before she got to the grocery store and forgot how to tell a Japanese cabbie how to get her home. There was no answer. I would only discover after it was too late, after she lost her way or just got lost, period. I couldn't risk it. It was time for outside help.

I advertised on craigslist in Denver, CO, and Portland, OR. Denver because my daughters could handle interviews and Portland because I had always liked the city and felt I could find someone nice in that nice place. Excuse the lack of logic here, but I was floundering.

There was one applicant who was young, about eighteen or twenty, and was a swimsuit model. “Could I take time off if I get a modeling gig?” I decided that when moving another woman into your house to care for your wife, a swimsuit model was probably not going to be a confidence builder for Jan.

There was another applicant who broke up with her boyfriend and thought being in Asia would help in her healing process. Thanks, but no. Others were better, real candidates, and we interviewed and checked references. Then we found Diane, who lived in Tacoma, WA. Again, it was Dick, my Alzheimer's Buddy, to the rescue. He put out the word to people in the local Alzheimer's community that someone in Asia was looking for a live-in caregiver, and it reached Diane from a friend of a friend. If there are miracles, was this not one?

She was amazingly qualified, having worked in long-term care facilities. As a Licensed Practical Nurse, she had done ward duty and understood not just sickness, but the patience that any nurse needs in dealing with the ill and their families. She also had a successful military career, serving thirteen years in the Air Force Reserve, and nine years in the Army National Guard. Her duties consisted of supervising teams doing medical evacuations (medivacs) from places like the Middle East during the first Gulf War, and a volunteer stint in New Orleans with the Red Cross in the aftermath of Hurricane Katrina. I had to wonder why in the world she wanted to work with me for what was little more than slave wages. The answer turned out to be that she was not only between challenges, but she also had a sense of adventure. Living in two Asian cities—Tokyo and Beijing—sounded irresistible to her.

I explained to Jan that Diane was coming to live with us to help out. At first, it went well, starting from that October day when we landed at Narita and headed for our apartment. In Tokyo, Diane slept on a futon in the third bedroom. In Beijing, since we only had a one-bedroom apartment, we found someone who wanted a roommate for an apartment nearby. I paid Diane's half of the rent and this meant that we were settled in both cities. I congratulated myself on getting it right.

From October to Christmas, Jan was in the mode of what Diane called “touring and showing you my city.” Jan wanted to share Tokyo and Beijing with Diane, the way any gracious person would treat a houseguest. I have pictures from those days, Jan and Diane wandering through parks and sightseeing. At this early stage, the idea of a live-in caregiver didn't bother Jan, although there was finesse needed on everyone's part. Diane suspected what I didn't; that these early days were a fragile honeymoon. Jan didn't really understand yet that we had a live-in caregiver because she was faltering. We got a break from the season because the fall was warm and pleasant, and Jan loved the excursions with Diane. Jan had always been the first in line for sightseeing or visiting a new museum, so life hit a pleasant stride.

Diane remembered those early days this way:

“When Jan didn't want to venture out I would ask her about the collection of artwork from various parts of the world that filled the apartment. She explained, in great detail, where each piece came from, and always with great joy. I laugh at the memory of her showing me the four-foot tall women carvings from Bali. Now these women aren't that appealing, but Jan had wanted them for the beautiful carving. When I said, “but Jan these women are not all that attractive,” she would answer, “Oh, I know, but aren't they a hoot to look at!

“The apartment has several Tibetan chests that you had brought back from your travels from that area. When the afternoon sunlight came through the windows each day these chests would be all aglow with colors of red, green and gold. The detail jumped out at you to say ‘look at me, read between the lines of color to read of my history.' Jan loved these chests and she would spend afternoons rearranging their contents.

“The sofa and chairs were draped in fabrics of red, yellow and gold ever so tastefully, giving the room the feeing of elegance, warmth, grace and style.”

But then came a new phase, where Jan slipped a little more into a different world populated by people only she knew. Diane sent this e-mail when I was on assignment, and I think even she was taken aback.

She is going through the flat moving this and that. “Getting ready to get rid of stuff, to make room for all the people.” She asked me to make arrangements to have most of the furniture taken out of my room. She took everything out of the big blue suitcase and is now taking those items from room to room. When I said to her, “Jan, just you, Barry, and I live here,” her response was, “I know but more people are coming and are here now.” I just let her be, and she soon settled down at the computer. I ask her to check the news for me, and this helps most of the time.

Diane was seeing what I had experienced, that Jan was losing her sense of where she was that day. If we flew from Beijing back to Tokyo, it might take Jan three or four days to understand where she was even though she and Diane were walking the streets of Tokyo almost daily.

There was the same confusion when we flew to Beijing. Jan would be in the Beijing one-bedroom apartment with China out the window, and two or three days after we made the switch she would still be asking, “What city are we in?”

And there was now restlessness and unease that triggerd her desire to go somewhere, almost anywhere. And this mood came with no warning. One day Diane and Jan were at a museum, and Jan suddenly stood up and announced that she was, indeed, going “home.”

“I have a credit card and money,” she said, insisting that “Barry called,” and told her to fly to Seattle. It was a moment for surgical cleverness, so Diane told Jan there was no problem about going to the airport, but it was late and all the flights to Seattle that day were already gone.

“You would have to spend the night in the airport,” Diane said. “I've done that, Jan, and it's really uncomfortable. There's no place to sleep except on those benches.”

Maybe they could just go tomorrow? Diane suggested.

Jan decided that sleeping for hours on uncomfortable airport plastic seats wasn't a good idea and sat back down. In a minute she had forgotten the whole idea. But when Diane told me, I knew this was another step further away. “It was her stubbornness and confusion about time and place,” Diane told me later. “It's an example of how quickly Alzheimer's Disease can affect a mind.”

When Jan's mood would abruptly change, Diane reacted just as quickly, like when they were on the Tokyo subway. Jan became agitated, anxious to get off “right now” at whatever was the next stop. She was tapping her fingers, and her mood was dark and angry.

Again, Diane reacted quickly and tried to distract her by suggesting they sing a song from a movie Jan and I had watched the night before. This was not normal Tokyo subway behavior, Diane recalled. In Tokyo, everyone keeps carefully to themselves, and it is impolite to even make eye contact with someone else, let alone make noise.

“There we were, two grown women, singing while swaying back and forth among the ever so rigid Japanese.”

Diane soon learned the value of the “singing” distraction and used it often in our neighborhood when they were out for walks. “Many times we walked down the street singing, which was a familiar habit for us. We walked as though no one was listening or looking, and we sang as though we were the hit of the show.”

I marveled at the thought of them strolling and singing down Tokyo's winding streets, and the Japanese almost too polite to stare at the strange foreign women. I knew Jan was happy if she was singing. I gave myself a nice mental pat on the back because having Diane there was working well for Jan. They got out of the apartment and went sightseeing, which I hoped was stimulating her brain. And it was making Jan feel good at the same time.

When we were together at night, there were conversations about where they had been that day, what they had seen, and a chance to see the pictures they had taken of each other. This was a new normal I could embrace, one that was giving Jan pleasure.

I loved it, and I could feel my anxieties about Jan's care begin to ease.

And then came absolute disaster: The Anger Monster.

Recently we started dealing with a new emotion; defiance. Jan simply refused to go out of the Tokyo apartment because it was “too cold.” I finally got her moving by taking the three of us to lunch, but it was an unpleasant new wrinkle. This is the first time she has ever defied ME in a situation like this, since she usually considers me her safe harbor.

Jan has devised several ways to deal with her forgetfulness. The first is ANGER—”I don't care about that person, so why should I remember him/her?” The second is PRETENDING; just agreeing when I really suspect she can't remember. The third, and I see this when we socialize, is going SILENT. I think she is afraid of saying something that draws attention to her situation, so she opts to say nothing at all. I have devised some counter strategies.

When she is angry, I explain who the forgotten person is and why that person is important to her. Humor helps here, and the idea is to jog her memory. Remember that the anger is really directed at herself over what it happening to her, not at any of us. When she's pretending, I just keep right on with the conversation and try to casually drop the name in within the next sentence or so.

Jan might say: “… that woman you work with.”

Barry: “Yes, you're right, darling, I think Marsha wants to do that story.”

And we're off and running.

With silence, the first thing is to notice it and then gently draw her into the conversation. She does fine once she gets comfortable. She is more likely to go silent in small groups, like a dinner, than at larger gatherings. She said virtually nothing—and I mean like two words—at a dinner with a group of eight. Two days later, at a wedding with a group of eighty, she was a social butterfly chatting to one and all and had a great time.

To be honest, she is not going to remember some of you. She is still there, that bubbly charming lady that we all know, so keep that thought if her mood suddenly shifts.

~Best, Barry

“Not to have control over the senses is like sailing in a rudderless ship, bound to break to pieces on coming in contact with the very first rock.”
~Mahatma Gandhi

It would erupt usually in the early afternoon, often with only the quick warning of a shadow crossing Jan's face, and then she was in a fury. Sometimes she couldn't even tell us what she was angry about, but the anger was there. Fist clenched. Face red. Sputtering.

It began after Christmas and a visit back to the US that went well and fueled my hopes that we were settling down—that The Disease had backed off for a while. I sent an e-mail out on how to act with Jan and our friends and family responded well.

On Christmas we were in Denver, visiting the girls. My son-in-law's parents are divorced, so we spent Christmas Eve with his mother and her husband, and Christmas Day with his father, Tom and Mary, his stepmother. Adding to the spirit of the season was our new granddaughter.

At Tom and Mary's house the gathering was fairly large, about a dozen people. When Tom saw Jan he introduced himself, as I had suggested in the e-mail. Mary did the same, and Jan was comfortable as she settled into the dinner and chatted with Mary, girl to girl. It felt like a Christmas should feel … good food, generations of family, and granddaughter Ariel reminding one and all of new beginnings and the many joys to come as she grew up.

Then it was back to Japan and big trouble that started the moment we walked in the door of the Tokyo apartment. Diane was there. She had stayed in Japan to sightsee. Over our two week absence, Jan had completely forgotten about Diane and having a caregiver. My constant reminders to Jan about Diane on the flight home were useless.

I don't know (who does?) what triggered the next phase; the anger. It was horrible to see this bright, laughing woman turn on herself and everyone else with such fury, an anger I had never seen before. And she had a target for what bordered on hatred: Diane. In these moments, Jan would insist that she didn't need Diane, and that Diane was in the way. To Jan, having another woman in the house was some kind of proof that she had a disease, and Jan rejected this.

No longer the woman who had once vowed to her neurosurgeon that she would fight and beat Alzheimer's, she was now a woman who outright denied that there was anything wrong with her. Diane was the face-to-face contradiction to that.

“We were never going to win,” Diane told me later.

There were days that fooled us, when Jan would be upbeat and friendly.

“Then wham!” remembers Diane. “Out came the anger. Because she had no control, understanding, or coping abilities to handle her anger it was just going to keep coming, making her all the more confused, and agitated.

“I knew, even if she could not articulate it, that Jan suffered with each of these episodes. It was like some kind of uncontrollable fit that would leave her exhausted.”

Then it turned out that, in Jan's now fast changing mind, there were others out to get her.

We found this out one day, when Jan was in the midst of her agitation. She was furious about what she claimed were now, not just Diane but, out of nowhere, a total of four women living in the house who frightened her, as if they meant to harm her, along with eating all our food. “Dammit, we have nothing for dinner,” she exploded. “It's that Diane and those women. They are eating everything.”

Once Jan decided the women were there, they stayed for good. She couldn't describe them, and when I asked something simple like what they were wearing, she said, “Normal clothes, like us.”

But over and over Jan said these women were targeting our supply of food, and their leader was Diane. Jan went so far as to confront Diane with the “evidence.”

“Jan had taken to hiding her favorite snacks behind tall items only to find them and ask me why I had done that,” Diane remembers. “Many times she told me I ate too much and too often, and that I would have to move out by the weekend.”

We had given Diane her own small pull-out drawer in the refrigerator where she could store her favorite foods, hoping that would pacify Jan. It didn't. Sometimes Jan would walk me to the refrigerator, her face mottled and red, open the door, and show me how little food there was. “See?” she would say, her finger shaking with rage as she pointed at mostly empty shelves. They were empty because we hadn't bought food for a while.

“Well, darling,” I would say, “we can just walk down to the little store and buy some more food.”

Buying more food didn't change Jan's moods. The next day, the Anger Monster would come calling. Once she stormed across the little street between our Tokyo apartment building and into the skyscraper where my office was located. I wasn't there, but our sound man was. She told him she had no money to buy food and furiously demanded that he give her cash now! He was taken aback, but he dug into his pocket and handed her Japanese yen. And, of course, she forgot what she had done. It was left to the embarrassed sound man to explain to me that Jan had, well, “borrowed” some money from him.

But it was Diane who was now her main enemy. Jan insisted over and over that if Diane wasn't there our lives would magically get back to normal. We needed to “get rid of THAT woman.”

Diane remembers one shopping trip Jan wanted to make without her. “She didn't want me with her. She became hostile, rude, and argumentative. After dealing with this behavior most of the morning my patience had worn thin. I started treating her like a self-centered teenager, with my hands on my hips, looking her in the eye, voice raised just a bit. This helped me more than it did her because I got it off my chest, as they say.”

I missed much of the Anger Monster because these outbursts usually came in the early afternoon when I was still at work. By the time I got home, it was late afternoon and Jan shifted into a different and happier mood, making dinner for Barry time. The shift was so fast it was as if someone flipped a switch. Jan would go right to the kitchen to start preparing for dinner. It might only be 3:00 and dinner was at 6:30. But the anger was gone, and now it was the dinner hour and time for all of us to be pleasant.

Even here, The Disease took what it wanted, giving us a more relaxing time with Jan and a much easier time for her without the anger, but it happened with yet another sign that her abilities were relentlessly failing.

“The refrigerator door would open and close, open and close as food was moved around taken out and put back in, moved from one shelf to another,” Diane remembers. “The pantry doors were opened and closed many times. She would stand in front of the shelves moving cans and boxes claiming once again ‘all the people had eaten the food.'”

The onions and garlic would be chopped with great care, one slice at a time then sautéed until over-cooked.

“It was the chopping process both in the morning and evening that she became obsessed with,” Diane recalled, “as this was the one thing she could do without losing her place in the process.”

Diane and I both noticed the same things; the meals were getting simpler as multi-tasking in the kitchen became too great a challenge. One evening, after several hours of preparation, we each had one small hamburger patty with a small dollop of ketchup on top.

But I didn't care. She was cooking (with Diane making casual walks through the kitchen through the whole process) and she was happy in her role of taking care of me. These were good things, and I enjoyed them, because by now I knew that whatever Jan was today could and most likely would be different tomorrow.

There was one firm rule—Jan was not to leave the house without Diane. I explained it over and over to Jan, telling her it was my decision and my rule. When she was calm she accepted it peacefully. But when the Anger Monster reared up, all bets were off. And—no surprise—came the challenge that Diane and I both knew was inevitable; abject defiance. One afternoon when I was at work, Jan made it clear to Diane that she was mad and had had enough. She WAS going out shopping on her OWN and NO ONE was going to stop her. She headed for the front door with escape on her mind. Diane put herself at the front door, using her body to block Jan.

“The afternoon I had to physically stop her was the most challenging,” Diane said later. “I had to take her hands, hold tight, look her in the eye and say ‘no you cannot leave now.'”

Diane repeated this, over and over, all the while staring directly into Jan's eyes and, at the same time, holding Jan's hands. “I remember taking deep breaths, doing all I could to remain calm and patient.”

I realized that the tide was turning. In Jan's eyes, Diane was now human proof that she was somehow ill. As she increasingly rejected Diane, Jan would spend whole afternoons in our bedroom, unwilling to go out of either the Tokyo or Beijing apartment on excursions with Diane. She would stretch out on the bed for hours, awake and uncooperative, with the door shut.

It added a new role to my list of duties, that of peacemaker. I tried reasoning with Jan and telling her why we needed Diane and how her being with us was to help both of us. I watched this rejection of Diane unfold with growing despair. I couldn't battle The Disease alone. I needed Diane or someone else in that role helping me care for Jan. We were way beyond the days when all I needed was to make a phone call or two to make sure she was okay.

But anyone in that role, any extra person in our lives, would become, in Jan's eyes, the same as Diane—proof that something was wrong and that something was about Jan. Occasionally, Jan's anger was directed at me. There would be angry demands that we get rid of Diane, and my efforts to calm her down rarely worked.

There was also anger about money, which was made worse as Jan became more and more befuddled about what country we were in and what currency to use. One trick was to take all the dollars, yen, and Chinese yuan out of her purse and put back only the currency she needed.

That was not the end of it.

“Why don't I have money,” Jan would demand, staring angrily at me in the morning as I was on the way to work. “I'm the wife and I should have the money to pay for the groceries.”

I would ask her gently, “Did you check your purse?” Usually there would be plenty of money in her purse. She simply forgot to look. Other times I would give her money, and the next day the money would be gone even though she hadn't gone shopping. I never knew where it went, and Diane guessed it got stuck in pockets or under mattresses and that it would turn up some day.

I was so focused on Jan that I missed how this was affecting Diane, who was always upbeat and cheerful in front of Jan and me. But privately she was struggling. No matter how much she counted to ten or went to her room to give her and Jan some separation in hopes of diffusing the anger, she faced what was, at times, an almost unreasoned hatred.

Being ever practical, Diane had a sensible answer to Jan's ill moods … exercise. “My morning walks were most important,” she says. “It was my way of dealing with anger and stress, and keeping fit mentally and physically. All of which are important when dealing with Alzheimer's. Several times I stepped out onto the dining room balcony, took a deep breath, counted to ten, stretched. Many times Jan would come join me. Sometimes, just being on the balcony and in a different location would help change Jan's own attitude. This gave us the opportunity to diffuse the anger. Soon we would be talking about the view, the little girls on the playground at the school below, or looking at Mt. Fuji.”

I had believed that having a caregiver living with us would push the effects of The Disease back for a while because Jan and I could continue some adjusted form of normalcy, even if normal was now a constantly shifting target that I was not always great at hitting.

And at first, Diane agreed, thinking I had bought a few more years living with Jan. With a caregiver, there was consistency and the safety Jan needed. But Diane watched with alarm as the slippage accelerated, and she watched with her own heart breaking. “I would see her clench her fists as she fought so hard to stay involved with a conversation, fighting inside herself not to fade away, trying so hard to stay with us. And then losing it.”

Caught in the midst of these changes, and in the losing battle for Jan to accept a caregiver, I forgot that The Disease was wickedly cunning. It hungers for not just the person and the brain it is murdering cell by cell, but also those nearby who are acting out of love and care. If it can pervert that care and love by turning it into destruction, then it can claim two people and it will raise a toast to itself for its deadly clever prowess.

And I knew I was the prime target.