THE CARINGKIND ORGANIZATION’S caregiver workshop began in the training room just after 5:30 p.m. Chairs were bunched around pushed-together tables. There were eight participants, Jim Taylor among them.
From the start, he hadn’t wanted to enlist in a caregiver support group, to spend week after week digesting the harrowing details of the future, learning about what duties awaited. “For some people, knowing everything is a comfort,” he explained. “That’s not for me. Hearing more about what the disease looks like will not be constructive. I know what it will look like. Helping them get dressed. Helping them go to the bathroom. I know. Who doesn’t know?”
This, though, seemed worthwhile and something he could handle, just two sessions to exchange clarifying information for family or partners of someone in the early stage, before caregiving became a vocation.
The hum of voices ceased, and Lauren Volkmer, a dementia-care trainer, passed out material. She told the participants that eventually they would need support, too. “You can only bend so far before you break,” she said.
She mentioned that one of the books she often provided caregivers was “The 36-Hour Day,” by Nancy L. Mace and Peter V. Rabins, a popular guide whose unnerving title injected some gravity in the room. She assured them they were not there yet.
Ms. Volkmer invited sharing. Anything at all. Driving came up. A woman said she got nervous when her husband almost ran a red light and stopped only because she yelled. Afterward, she confiscated his keys. He got furious. She relented. They were still hashing it out.
People sharing their issues, being daringly intimate from their insider’s view, drawing solace from the common ground.
One frustrated woman, caring for her husband, said with a quaver in her voice: “You’re left on your own with this. You’re alone. You’re left with zip. You’re looking all the time, watching — oh you repeated that two times, you repeated that three times. I don’t like it.”
Another woman: “He probably doesn’t like it, either.”
The first woman: “They say he could go, whomp, straight down. It stinks. I’m sorry. I’m really angry.”
There was no one way to react to this disease. It hit all the emotions.
Now Ms. Volkmer brought up the organization’s medical alert program. Wandering is common with Alzheimer’s. It can happen if there is a disruption in one’s routine — say the train doesn’t stop at the usual stop, or you go into a public bathroom through one door and come out through a different one. The organization deals with 350 missing people a year, 99 percent of whom it says are found. It recommends that everyone get an identification bracelet no matter how early a patient’s condition.
Mr. Taylor said he liked the idea but wasn’t sure how to get his wife onboard. Then he said that she had woken up the other night from a bad dream and felt disoriented, and that she said she had been thinking and that she wanted one of those bracelets.
Next, Ms. Volkmer said she would like everyone to try a little exercise, prefacing it by saying, “This is not a test to see if you have Alzheimer’s.”
She handed everyone two sheets of paper. Each contained a large star drawn in double lines. She asked them to draw a line between those double lines, tracing the outline of the star.
Once they had finished, she glanced over them and asked how they felt about the experience. Back came their clipped answers:
“Zippo for me.”
She then handed everyone a small mirror. Now, on the second sheet, she wanted them to position the mirror so they could see the star in the reflection. Then to trace the star again while looking only in the mirror.
The point, of course, was to let them experience a small taste of what it was like to have dementia, to promote understanding and empathy. (There are other exercises, like donning goggles to simulate vision deterioration and wearing gloves with popcorn kernels in them to replicate worsening sensory abilities.)
As he fumbled his way through the star exercise, Mr. Taylor said, “This is like driving a U-Haul trailer in reverse.”
Ms. Volkmer said: “I once had a dental hygienist in my class, and she did it perfectly and ruined it. Because she’s used to working backward with a mirror.”
The results were appalling, lines scooting all over the place.
Again, Ms. Volkmer asked how they felt.
Ms. Volkmer said, “It’s almost ludicrous, isn’t it?”
The piqued woman asked, “So is this how they feel, people with Alzheimer’s?”
Ms. Volkmer said: “I would put that back to you. What do you think?”
The woman was quiet. She got it. “Yes,” she said in a soft voice, “I guess it must be.”
DURING A RUMINANT moment, Geri Taylor sat and, as an exercise, wrote down how she had changed. She called it: “Things I Do Differently as a Result of Diminished Capacity.”
The bulletinlike inspection report clarified for her who she now was. She found it sobering, for it caused her to realize just how reliant on others the slow drip of betrayals had made her, and that wounded her hard pride.
The log was two full pages. There were the expected entries, like not driving, not traveling alone (except by subway, bus or Metro-North train), simplifying her book choices, planning very carefully for outside activities (“always carry the same ‘highway bag,’” “constantly checking my things when I am out — have lost my vest, boots, watch and glasses in past nine months — very unusual”).
The list also contained some upbeat aspects. For instance, she put down how she cherished friends and family more than ever: “Daily call, email and text family and friends at a rate of 2-3 daily.”
And she listed something unexpected: “Do take housework more seriously and spend more time.” She cited the elements of housework as “an escape to simpler things” and how they were “time away from people and restful.” The dust and laundry, after all, didn’t judge her limitations, her spotty memory. So she found delight and gratification, even intoxication, in her triumphs over specks of dust and blemished counters.
“I can’t manage the bills, and I can’t manage the schedule,” she said. “But this is something I can do, and I can do well. So I’ve embraced it more. It’s identity. It’s a role I can still assume.”
She pointed out, “And most of the time, you can sing!”
As she wiped down counters and vacuumed the floor and changed bedsheets, she liked to sing whatever drifted through her mind (“Sometimes it’s disturbing what goes through my mind”).
They were old hymns. Show tunes. “Zip-a-Dee-Doo-Dah.” “Amazing Grace.” A favorite was “Barbara Allen,” an English ballad about a man dying as he pined for the love of a woman. Grim, all right, but she liked it just fine for the tune, which suited her voice, a second soprano alto. So she cleaned with gusto and great pleasure. And she sang.
FRIDAY ARRIVED, and things were slow. Her son, Lloyd Widmer, came to visit her in Connecticut. The Taylors own a cozy, tree-rimmed house on Candlewood Lake in Sherman.
Ms. Taylor wanted to thin out the closets, see what her son wished to salvage. It was part of her determination to lighten the stored threads of her life while she could, clear the decks. It was winter weather, late 2014, chilly inside. The furnace had broken, the summoned repairman was on the way.
Mr. Widmer is companionable and chatty with an engaging smile. When he was in high school he had wanted to be a pilot, but was told his asthma and a mild heart issue disqualified him. He satisfies the urge by continuing to play pilot simulation games. When she could, Ms. Taylor would visit him and go hiking, catch up that way.
Sitting side by side, they combed desultorily through oddments dusted with memories — his school yearbooks, clippings resurrecting high school baseball feats, a cassette tape of the “Star Wars” Christmas album. Here was a framed photograph of Ms. Taylor’s grandfather and great-grandfather. And a tape of Ms. Taylor and Mr. Widmer singing “A Bushel and a Peck” from the musical “Guys and Dolls.”
“That can stay with you,” he said.
“Thanks a lot,” she said. “It would be hard to part with it.”
Earrings. She knew their origin at once, a high school classmate she had been engaged to. “He was drafted during the Vietnam era,” she said. “He was gone for like a year and a half, and I didn’t hear from him. So I married his best friend.”
And, oh yes, here was a stack of old photos of the talking dog. Not every extended family has a pet that speaks, but hers did. Her uncle from Germany, Lloyd Bonsall, after whom she named Mr. Widmer, owned Mikey, a boxer who seemingly spoke several words. The dog had acquired a certain fame, even been on German TV.
“I never would have believed it until I was sitting on the couch next to the dog and it said ‘Mama,’” Ms. Taylor said. “I was stunned. I still haven’t fully recovered.”
A talking dog. She had to laugh. It got her reflecting on her own speech. She had always been so meticulous about choosing just the right words. That had become impossible. “I had to tell myself, Good enough is good enough,” she said. “I’m on the good-enough word program. I hope you like the words I picked, because that’s what you’re getting. And you know what? I realized people don’t listen that carefully anyway. I get the point across.”
Once they finished the sort and pick, a good chunk of the fat pile destined for the trash, she talked about “Still Alice,” the movie starring Julianne Moore about a woman with early-onset Alzheimer’s. She deliberately saw it alone, because she didn’t want companions to project what they saw onto her. She very much enjoyed it.
“When I came out, I felt so calm,” she said. “I felt as if I had gone to a foreign country and had met someone from home. It was so realistic — the grappling for words and everything. It wasn’t sentimentalized. It was straight on. I liked that the husband walked away at the end. A lot of people walk away. It’s what happens.”
Mr. Widmer said, “It sounds like must-miss TV for me.”
“Well,” she said, “it was very well done.”
“I don’t need someone else’s opinion of this,” he said. “I’m watching it. I don’t want to be swayed in how I’ll deal with you.”
She had a fixed idea of what she desired, no matter where the disease went. She knew some people with Alzheimer’s wanted their lives ended. Not she. “I have a major philosophical difference with that,” she said once. “I see myself as part of an organism that is the family. I’m part of this connection. I don’t just say, Lights out, that’s it. If I just sit and hum tunes and that’s it, well, that’s still me.”
Arranged at the dining table, they ate fat sandwiches from the IGA. Cookies for dessert. She had always enjoyed a good cookie, but in her new state she was often fatigued and sugar invigorated her. “I’ve gone from being a cookie person to a cookie every day and sometimes two cookies a day,” she said. “Quick energy.”
The afternoon went. In the cold air, her son packed up the car with his memorabilia. It smelled like rain.
She mentioned that Mr. Taylor had recently read an item in the newspaper about a Phase I clinical trial, a very early-stage study for an experimental drug. This was a new thing on her mind, a new project. The drug was aimed at slowing mental decline by breaking up the plaques formed by the beta amyloid protein that are the hallmark of Alzheimer’s. The company Biogen was testing subjects with mild cases of Alzheimer’s. It was hoped to be one of the more promising possibilities in a field littered with disappointments.
Right away, Ms. Taylor had started trawling the Internet and learned that part of the trial was underway at Yale-New Haven Hospital.
A few days after her son’s visit, she called Yale and learned that a few slots were still open. Maybe one could be hers. Soon, she was in New Haven for testing. She found out that had she waited another 48 hours to call, she would have been out of luck.
The results of the Mini Mental State Examination, a measure of cognition, placed her in the mild stage of Alzheimer’s, the appropriate group. A PET scan confirmed that she had amyloid buildup in her brain, another prerequisite for the trial.
But the candidates needed at this juncture were those who also had the gene variant known as ApoE4, which increases the risk of developing late-onset Alzheimer’s. So she was tested for it. A positive result would be her one ticket in. The answer would come in a few weeks.
This felt like hope and it had a potent allure for her, the possibility, long shot that it might be, that the drug might negotiate some sort of truce with this disease. She very much wanted in.
One thing the Taylors did was buy a modest amount of Biogen stock. Their financial adviser frowned on the choice, thinking it expensive. But they did it for emotional reasons — a tiny vote of confidence, a gesture that might change the calculus and bring them the luck they needed.