NEW YORK CITY
Fall 2014
A few weeks after that Alzheimer’s luncheon, B. went into the city to see Dr. Howard Fillit, the founder and director of the Alzheimer’s Drug Discovery Foundation, the nonprofit that the lunch had benefited.
We had known, even before the lunch, that Dr. Fillit was a leading force in the fight against Alzheimer’s. Hearing him speak at the lunch made me realize that he was both a scientist and a physician, searching for promising drugs but also managing a small private practice, seeing Alzheimer’s patients as part of his weekly schedule. From the way he spoke about them, it was clear that the clinical side was at least as important to him as medical research.
Howard had fought Alzheimer’s for more than thirty-five years. Only in the last few years, though, had the fight become personal. He had watched Alzheimer’s take over his father, step by all-too-predictable step. Howard’s family had pleaded with him to take some extraordinary measure: as an expert in the field, weren’t there strings he could pull, experimental drugs to try? He had none.
In his father’s last days, hospitalized with Alzheimer’s, Howard had sat with him, as helpless as any other son whose father was dying of the disease. As he stood up to leave, his father had had a rare moment of lucidity—like a rainbow. “I love you, son,” his father had said. Howard knew that his father might not even remember his name. But the deep emotions of fatherhood had remained till the end.
At the luncheon, Howard had given me his card, put his cell phone number on it, and told me to call anytime. That had given me an idea.
Our doctors at Mount Sinai had done B.’s diagnosis and put her on various drugs; they had treated us with great sympathy and concern. But after the follow-up visit, we’d sort of drifted apart. We knew they were busy with new drug trials, and teaching, and seeing other patients. We had respect for all they were doing. We just needed someone who could answer a quick question when we had one. Howard, as we had come to know him, had told us to call whenever we wished. I’d asked him if he would agree to see B.; an office visit had been set up right away. This was a caregiver’s lesson: never be shy about changing your doctor if your loved one isn’t getting what you think she needs.
There was, I would soon see, another, quite horrifying lesson to be learned that day, but none of us—not even Howard—saw it coming.
That day, I put B. on the jitney from Sag Harbor to Manhattan. Dana would be waiting at the other end for her; she would take B. to Howard’s office and then put her on the bus home. I wanted the day to clear out some of the piles of clothes and other stuff in the basement that B. was hoarding. The prospect of a day to myself cleaning the basement was looking pretty good. So was going that evening to the American Hotel for a drink or two, then having the jitney roll right up to the door. B. would get out, I’d be there to greet her, and we’d have a nice dinner before heading home for the night. Drinks and dinner at the hotel was one of the few pleasures from our former lives that we could still enjoy.
Dana was there at the New York end, right on schedule, to meet B. and walk her over to Howard’s office on East Sixtieth Street. The day had turned chilly, and snow was predicted for the suburbs that night. There might even be snow for Thanksgiving, two days away. Perhaps to compensate, someone in Howard’s clinic had cranked the heat up high: the waiting room was stifling.
Oblivious to the heat, Howard ushered B. and Dana into his office—an office as small and plain as Dr. Goldstein’s at Mount Sinai. One thing you can say about Alzheimer’s doctors: they aren’t in it for the money. Or if they are, they’re spending a lot of time in tiny offices waiting for it.
B. gave Howard one of her dazzling smiles and joshed with him as she took her seat. She looked fit and youthful, ready for a six-mile speed walk. Howard asked B. when she’d first noticed she had memory problems. “I don’t really remember,” she said, and described the facial tingling she’d felt all along. A few minutes later she described it again, exactly as she had before. And then a third time. Howard frowned. “Perseveration,” he said gently to Dana. “That’s what that’s called. And amnesia.” It wasn’t good.
“Is she able to make phone calls?” Howard asked Dana about B. “Can she dial the number?”
“If she wanted to make a phone call, she would, but she doesn’t,” Dana said. “The remembering of the number might be the hardest part, but also, she doesn’t want to talk to people.”
“Well, I don’t want to talk to everybody!” B. said with a laugh.
“For her friends,” Dana explained, “B. was the social person, the organizer. Now that she’s not doing it…she’s becoming socially isolated.”
Also, we still hadn’t found her phone.
“B., is there a reason why you don’t want to do these things?” Howard asked.
“It’s hard to say,” said B., and she started to cry.
When she’d recovered, Howard started probing for details of B.’s life at home—details that would give him a clear sense of what stage of Alzheimer’s she had entered. Staging, they called it, which was diagnosing the neurological components of cognitive losses, as identified by the loss of basic daily functions.
“How is her speech, her language?”
“She has trouble with words and completing sentences,” Dana replied.
“There’s a name for that,” said Howard. “Aphasia. Lack of abstract thinking.” Did B. still cook? he asked.
Dana nodded. “But her cooking isn’t what it was. Of course, when you cook at such a high level, as B. did—the level of a professional chef—you notice when things aren’t quite as perfect as they once were.”
“That, too, is aphasia. What household tasks does she still do?”
“She still does laundry,” Dana said, “but it’s not effective. If there are dirty rags on the floor, she’ll wash those, but not the pile of clothes right beside them.”
“Agnosia,” Howard said quietly. “The failure to recognize what things are.”
B. was not abusive, though, as many people with Alzheimer’s can be. To Dana, and to me, it was just inconceivable that B. could ever be that.
“Sometimes she gets angry because she knows she’s losing control,” Dana said. “But she’s such a happy-go-lucky person that even when she’s angry I know she’s not angry.”
“Loss of emotional control, another executive function—very common,” Howard said. “How about dressing? Can B. dress herself?”
Dana explained about the strange clothes choices—summer dresses with winter hats and shawls. But yes, B. could still put her clothes on herself. Still bathe herself, too, though if I didn’t prod her, Dana felt, B. might forget to shower for days.
“The dressing problem is a good example of, among other things, apraxia,” Howard explained. “The loss of the ability to sequence and conduct complex tasks. Ultimately, this leads to the inability to tie one’s shoes, or even to feed oneself.”
By now, Dana was hearing a pattern.
“Yes,” Howard said, “the A’s of Alzheimer’s, they call it. Amnesia, agnosia, aphasia, apraxia, apathy, and loss of executive function or abstract thinking.”
Howard wanted to know if B. still drove.
“Dan doesn’t like it when I drive anymore,” B. chimed in, “but I’m not afraid to drive.”
“She should not be driving at all,” Howard said sternly. “There are problems with reflexes and judgment at this stage.”
“She walks into town now,” Dana assured Howard.
That brought up another concern: identification. “Do you have a bracelet that says who you are and explains you have Alzheimer’s?” Howard asked.
B. did not.
“I’m worried she might get lost,” Howard said. “What kind of identification does she have?”
“We cannot find her purse,” Dana said with a sigh. “I’m looking for the gold one and the black one. She has not had her cell phone for a couple of weeks, either.”
Howard frowned. “She must have an identification bracelet that says she has Alzheimer’s,” he said. A cell phone was critical, a handbag with pieces of identification, too. But as the last weeks had shown, they could be lost. That’s why the bracelet was even more important.
A bracelet, no driving—and no alcohol. In an already impaired brain, alcohol could push things over the edge.
B. nodded meekly as Howard ticked them off.
“Has she lost weight?”
“Not that much,” Dana said. It was true: I’d kept off the weight I’d lost on our Mediterranean diet, but B. had gained some back by eating sweets.
“How about her appetite?”
“Horrible!” Dana said. “She eats all these sugary snacks at night.”
“Dan has the cookies!” B. exclaimed with a laugh. “He won’t even share the cookies with me!”
It was true: I was the cookie monster, keeping them out of her reach.
Howard laughed with her, but then turned serious. “I want B. to eat whatever she likes,” he told Dana. “The worst thing is if she loses too much weight. I’m not so concerned about preventing a heart attack in twenty years because she has too much cholesterol. At this point it’s about not losing weight. I don’t care if she has sundaes every day.”
“You’ll have to convince Dan,” B. said.
“I’ll write you a prescription for cookies,” Howard said with a grin, and proceeded to do just that. Just to be sure, Dana photographed it with her iPhone and forwarded it to me in Sag Harbor.
Along with eating regularly and well, even with a few prescribed treats, the best thing B. could do at this stage, Howard said, was exercise daily. He was pleased to hear that we had gotten a trainer for B., and that he was working with her three times a week. It wasn’t enough, but it was a start. “Exercise releases factors from the muscles that help the brain,” Howard explained. “Don’t just exercise three days. If you possibly can, exercise every day.”
Howard looked through the thin new file he had for B. so far. “I see you have a living will and a health-care proxy,” he said approvingly.
“I don’t want to hear that,” Dana said.
“It’s good, though,” Howard said. “It expresses her wishes.”
As yet, the file didn’t have B.’s blood tests and brain scans from Mount Sinai. If Howard was going to be her regular doctor, he would need them. “Please request the records from Mount Sinai,” he told Dana. “They’re your property.” That was good to know.
Howard paused.
“I want to talk about home care,” he said, looking hard at B. “Dan says he is stressed-out—and beyond. You and he both need home care—right away. I would like to start with at least four hours a day, probably five days a week—at the minimum.”
I had explained, when I first met Howard, how the conversation went whenever I brought up home care with B.: how she said yes, “as long as it’s someone we like,” and then ruled out every prospect she met. Howard said he understood completely: taking on home-care help signaled a loss of privacy and independence that no one wanted. But that, Howard said in so many words, had to change.
“B. is no longer mild stage,” Howard told Dana, using the three-stage model. “More like middle stage, based on how long she’s been sick, as well as on her cognitive and functional disabilities. We need to start putting the long-term care plan together that keeps B. safe and lets Dan have some time off. It’s not just about where we are now but where we’re going to be in six to twelve months from now.”
To confirm his gut sense of what stage B. was in, Howard put her through a few cognitive tests. He showed her a page with circled letters and numbers, and drew a line from A to 1, then from B to 2. “Can you continue the pattern?” he asked B.
She could not.
“I’m going to say some words I want you to remember,” Howard said. “Face, velvet, church, daisy, red.”
B. could recall only the first two. Howard repeated them to her and asked her to keep them in mind as they did other tests.
“Tell me words that start with the letter F.”
“Finger…food…” Those were the only ones B. could suggest.
“Can you tell me the names of ten animals?”
A long pause. “Bunny…chicken…a horse, a cow…” and then a longer pause. “I’m glad Dan isn’t here!” B. said with a laugh.
“I’m not,” Howard said soberly. “I wish Dan was here to see this.”
Each of the tests probed one or more brain functions. The A-1, B-2 test? Reasoning, or as doctors put it, executive function and language. Animal naming? Executive function and memory loss. “What do shirts and shoes have in common?” Howard asked B. “They’re both covering something and making something easier in your life, as far as the shoes go.” Abstract reasoning.
Finally Howard asked B. to recall the five words he’d told her to keep in mind. She couldn’t remember a single one.
“Was one of the words a color?”
“I don’t know.”
“Was it yellow?”
“Maybe.”
“Was it a flower?”
“I don’t remember.”
“What is today’s date?” Howard asked.
“I don’t know.”
“What year were you born?”
“I’m not sure,” B. said. “Ninety forty-nine, maybe, or 1942.”
B. didn’t know what year it was. She didn’t know what city she was in.
“B. is much further along than we thought,” Howard told Dana. “Her social personality is very strong and maintained, but it’s a veneer behind which there is much less than appears—or than I thought.”
The parts of the brain that handled these functions were being devastated, one by one: the temporal lobe (memory and learning), the amygdala (tying emotions to memories), the frontal lobe for executive function (judgment, reasoning, planning, working memory, and emotional control). Alzheimer’s was like Sherman’s army, leveling everything in its path, the disease spreading in a now well-established pattern.
Until now, Howard had maintained a doctor’s demeanor: cordial and concerned but a bit detached. It seemed to fall away as he turned back to B. “Here’s the thing,” he told her gently. “I want you to be happy, and that’s what we’re going to do for you—keep you safe and happy. That’s the only thing that’s really important. I want you to have a schedule, so that you have fun and are safe every day. As far as medicines go there may be a couple of others I want to prescribe but I need to have your chart sent over from Mount Sinai. Above all, I need you to accept someone in the house now—a home-care worker who can help you with all these things. Will you do that for me?”
B. nodded. “Yes,” she said softly, “I will.”
And then the office visit ended, and the worst eighteen hours of our lives as a family began.