“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.