Aging Care LLC

Reprinted from: http://www.nytimes.com/interactive/2016/05/01/nyregion/living-with-alzheimers.html?_r=0

FRAYING AT THE EDGES Part 2
By N. R. KLEINFIELD

HER HUSBAND couldn’t adjust, as if he had stumbled into the wrong life. He wouldn’t meet her eyes. He drew away, sulky, making her feel disowned.

As he would describe it: “I did the usual man thing and went into my cave. Became uncommunicative for two weeks. I thought, this was not what I signed on for. I had married a nurse to take care of me. How’s that for being supportive?”

Two years younger than his wife, Mr. Taylor is a lanky, warm-voiced man with a narrow face and cap of precisely combed snow-white hair.

To unfreeze the chill between them, it took a pep talk that put the present in softer perspective. They sat down and Ms. Taylor said straight off, “This is something that is going to develop, but it hasn’t developed yet.” Just saying that helped.

Yes, something big had happened. She was what she was. Yet they were still alive. Still together, with more mileage in their future. So they moved forward in the first days of their reordered lives.

Not only was her memory leaving her. Many think of Alzheimer’s as a memory disease, but its awful mysteries involve more than that. When she gave the doctor examples of her symptoms, he replied, “That’s not memory; that’s executive function.” In effect, you lose the sequence of steps in a process. Like a man who begins shaving while neglecting to use shaving cream.

She couldn’t know the speed of her decline. It is different with everyone, until the disease realizes its ultimate purpose. The impact, she had learned, in part appears determined by the amount of cognitive reserve, the mental capabilities of the brain that accumulate over a lifetime and are related to intelligence and stimulation. She felt she had plenty of that — at least she hoped so.

Her doctor put her on Aricept, a drug designed to improve cognitive performance. It seemed to sharpen her thinking, especially in the morning, but she couldn’t really gauge how much good it did. There were some side effects. She abandoned drinking when she kept getting nauseated. She was never a big drinker, but, as she put it, “I liked to party.”

Fully aware that an earthquake had occurred in her life, she knew this disease was bottomless in its unhappiness if you let it take you there. Yet her belief system was optimism. She never cried. Depression, she knew, would lead her down alleys she didn’t want to visit and held nothing for her. (“I can think of 10 things that would get me more upset. My son could get hurt. My sister could.”) Instead, the disease made her hungry for living.

“I don’t have very typical reactions,” she explained. “There was actually a sense of relief because of doing something about it. I intellectualize things, so it gave me a false sense of control. I knew I had a tremendous amount of family and friend support. I knew my husband doesn’t run away from things.”

She vowed to plunge ahead and accelerate her longtime interest in photography. See friends more. Mr. Taylor had his Friday morning foreign affairs group at the Jewish Community Center but planned to indulge his interest in acting before he would be conscripted into doing more and more for his wife. He signed up for some acting lessons. Doing these things, they felt, would make the disease more coherent in their lives. Somehow they aimed to live the most fulfilling days they could at what seemed the bleakest possible time.