“But Mom, you seem perfectly fine. You must’ve caught this really early on, I wouldn’t even know anything was wrong,” said Tom.
“I knew,” said Lydia. “Not that she had Alzheimer’s, but that something was wrong.”
“How?” asked Anna.
“Like sometimes she doesn’t make any sense on the phone, and she repeats herself a lot. Or she doesn’t remember something I said five minutes ago. And she didn’t remember how to make the pudding at Christmas.”
“How long have you noticed this?” asked John.
“At least a year now.”
Alice couldn’t trace it quite that far back herself, but she believed her. And she sensed John’s humiliation.
“I have to know if I have this. I want to get tested. Don’t you guys want to get tested?” asked Anna.
“I think living with the anxiety of not knowing would be worse for me than knowing, even if I have it,” said Tom.
Lydia closed her eyes. Everyone waited. Alice entertained the absurd idea that she had either resumed memorizing her lines or fallen asleep. After an uncomfortable silence, she opened her eyes and took her turn.
“I don’t want to know.”
Lydia always did things differently.
IT WAS ODDLY QUIET IN William James Hall. The usual chatter of students in the hallways—asking, arguing, joking, complaining, bragging, flirting—was missing. Spring Reading Period typically precipitated the sudden sequestering of students from the campus at large into dormitory rooms and library cubicles, but that didn’t begin for another week. Many of the cognitive psychology students were scheduled to spend an entire day observing functional MRI studies in Charlestown. Maybe that was today.
Whatever the reason, Alice relished the opportunity to get a lot of work done without interruption. She had opted not to stop at Jerri’s for tea on the way to her office and wished now that she had. She could use the caffeine. She read through the articles in the current Linguistics Journal, she put together this year’s version of the final exam for her motivation and emotion class, and she answered all previously neglected emails. All without the phone ringing or a knock on the door.
She was home before she realized that she’d forgotten to go to Jerri’s. She still wanted that tea. She walked into the kitchen and put the kettle on the stove. The microwave clock read 4:22 a.m.
She looked out the window. She saw darkness and her reflection in the glass. She was wearing her nightgown.
Hi Mom,
The IUI didn’t work. I’m not pregnant. I’m not as upset as I thought I’d be (and Charlie seems almost relieved). Let’s hope my other test comes back negative as well. Our appointment for that is tomorrow. Tom and I will come over after and let you and Dad know the results.
Love,
Anna
THE ODDS OF THEM BOTH being negative for the mutation descended from unlikely to remote when they still weren’t home an hour after Alice had anticipated their arrival. If they were both negative, it would have been a quick appointment, a “you’re both fine,” “thank you very much,” and out-the-door appointment. Maybe Stephanie was just running late today. Maybe Anna and Tom had sat in the waiting room much longer than Alice had allowed for in her mind.
The odds crashed from remote to infinitesimal when they finally walked through the front door. If they were both negative, they would have just blurted it out or it would have sprung, wild and jubilant, from their facial expressions. Instead, they muscled what they knew beneath the surface as they moved into the living room, stretching out the time of Life Before This Happened as long as possible, the time before they’d have to unleash the hideous information they so obviously held.
They sat side by side on the couch, Tom on the left and Anna on the right, like they had in the backseat of the car when they were kids. Tom was a lefty and liked the window, and Anna didn’t mind the middle. They sat closer now than they ever did then, and when Tom reached over and held her hand, she didn’t shriek, “Mommm, Tommy’s touching me!”
“I don’t have the mutation,” said Tom.
“But I do,” said Anna.
After Tom was born, Alice remembered feeling so blessed, that she had the ideal—one of each. It took twenty-six years for that blessing to deform into a curse. Alice’s facade of stoic parental strength crumbled, and she started to cry.
“I’m sorry,” she said.
“It’s going to be okay, Mom. Like you said, they’re going to find a preventative treatment,” said Anna.
When Alice thought about it later, the irony was striking. Outwardly, at least, Anna appeared to be the strongest. She did most of the consoling. And yet, it didn’t surprise her. Anna was the child who most mirrored their mother. She had Alice’s hair, coloring, and temperament. And her mother’s presenilin-1.
“I’m going to go ahead with the in vitro. I already talked with my doctor, and they’re going to do a preimplantation genetic diagnosis on the embryos. They’re going to test a single cell from each of the embryos for the mutation and only implant ones that are mutation-free. So we’ll know for sure that my kids won’t ever get this.”
It was a solid piece of good news. But while everyone else continued to savor it, the taste turned slightly bitter for Alice. Despite her self-reproach, she envied Anna, that she could do what Alice couldn’t—keep her children safe from harm. Anna would never have to sit opposite her daughter, her firstborn, and watch her struggle to comprehend the news that she would someday develop Alzheimer’s. She wished that these kinds of advances in reproductive medicine had been available to her. But then the embryo that had developed into Anna would’ve been discarded.
According to Stephanie Aaron, Tom was okay, but he didn’t look it. He looked pale, shaken, fragile. Alice had imagined that a negative result for any of them would be a relief, clean and simple. But they were a family, yoked by history and DNA and love. Anna was his older sister. She’d taught him how to snap and blow gum bubbles, and she always gave him her Halloween candy.
“Who’s going to tell Lydia?” asked Tom.
“I will,” said Anna.
MAY 2004
Alice first thought of peeking inside the week after she was diagnosed, but she didn’t. Fortune cookies, horoscopes, tarot cards, and assisted living homes couldn’t tempt her interest. Although closer to it every day, she was in no hurry to glimpse her future. Nothing in particular happened that morning to fuel her curiosity or the courage to go have a look inside the Mount Auburn Manor Nursing Center. But today, she did.
The lobby did nothing to intimidate her. An ocean scene watercolor hung on the wall, a faded Oriental carpet lay on the floor, and a woman with heavily made up eyes and short, licorice black hair sat behind a desk angled toward the front door. The lobby could almost be mistaken for that of a hotel, but the slight medicinal smell and the lack of luggage, concierge, and general coming and going weren’t right. The people staying here were residents, not guests.
“Can I help you?” the woman asked.
“Um, yes. Do you care for Alzheimer’s patients here?”
“Yes, we have a unit specifically dedicated to patients with Alzheimer’s. Would you like to have a look at it?”
“Yes.”
She followed the woman to the elevators.
“Are you looking for a parent?”
“I am,” Alice lied.
They waited. Like most of the people they ferried, the elevators were old and slow to respond.
“That’s a lovely necklace,” said the woman.
“Thank you.”
Alice placed her fingers on the top of her sternum and rubbed the blue paste stones on the wings of her mother’s art nouveau butterfly necklace. Her mother used to wear it only on her anniversary and to weddings, and like her, Alice had reserved it exclusively for special occasions. But there weren’t any formal affairs on her calendar, and she loved that necklace, so she’d tried it on one day last month while wearing a pair of jeans and a T-shirt. It
had looked perfect.
Plus, she liked being reminded of butterflies. She remembered being six or seven and crying over the fates of the butterflies in her yard after learning that they lived for only a few days. Her mother had comforted her and told her not to be sad for the butterflies, that just because their lives were short didn’t mean they were tragic. Watching them flying in the warm sun among the daisies in their garden, her mother had said to her, See, they have a beautiful life. Alice liked remembering that.
They exited onto the third floor and walked down a long, carpeted hallway through a set of unmarked double doors and stopped. The woman gestured back to the doors as they shut automatically behind them.
“The Alzheimer’s Special Care Unit is locked, meaning you can’t go beyond these doors without knowing the code.”
Alice looked at the keypad on the wall next to the door. The numbers were arranged individually upside down and ordered backward from right to left.
“Why are the numbers like that?”
“Oh, that’s to prevent the residents from learning and memorizing the code.”
It seemed like an unnecessary precaution. If they could remember the code, they wouldn’t need to be here, would they?
“I don’t know if you’ve experienced this yet with your parent, but wandering and nighttime restlessness are very common behaviors with Alzheimer’s. Our unit allows the residents to wander about at any time, but safely and without the risk of getting lost. We don’t tranquilize them at night or restrict them to their rooms. We try to help them maintain as much freedom and independence as possible. It’s something we know is important to them and to their families.”
A small, white-haired woman in a pink and green floral housecoat confronted Alice.
“You’re not my daughter.”
“No, sorry, I’m not.”
“Give me back my money!”
“She didn’t take your money, Evelyn. Your money’s in your room. Check your top dresser drawer, I think you put it there.”
The woman eyed Alice with suspicion and disgust, but then followed the advice of authority and shuffled in her dirty white terry-cloth slippers back into her room.
“She has a twenty-dollar bill she keeps hiding because she’s worried someone will steal it. Then, of course, she forgets where she put it and accuses everyone of taking it. We’ve tried to get her to spend it or put it in the bank, but she won’t. At some point, she’ll forget she owns it, and that’ll be the end of it.”
Safe from Evelyn’s paranoid investigation, they proceeded unimpeded to a common room at the end of the hallway. The room was populated with elderly people eating lunch at round tables. Upon taking a closer look, Alice realized that the room was filled with elderly women.
“There are only three men?”
“Actually, only two out of the thirty-two residents are men. Harold comes every day to eat meals with his wife.”
Perhaps reverting to the cootie rules of childhood, the two men with Alzheimer’s disease sat together at their own table, apart from the women. Walkers crowded the spaces between the tables. Many of the women sat in wheelchairs. Most everyone had thinning white hair and sunken eyes magnified behind thick glasses, and they all ate in slow motion. There was no socializing, no conversation, not even between Harold and his wife. The only sounds other than the noises of eating came from a woman who sang while she ate, her internal needle skipping on the title line of “By the Light of the Silvery Moon” over and over. No one protested or applauded.
By the light of the silvery moon.
“As you might’ve guessed, this is our dining and activities room. Residents have breakfast, lunch, and dinner here at the same times every day. Predictable routines are important. Activities are here as well. There’s bowling and beanbag toss, trivia, dancing and music, and crafts. They made these adorable birdhouses this morning. And we have someone read the newspaper to them every day to keep them up on current events.”
By the light
“There’s plenty of opportunity for our residents to keep their bodies and minds as engaged and enriched as possible.”
of the silvery moon.
“And family members and friends are always welcome to come and participate in any of the activities and can join their loved one for any of the meals.”
Aside from Harold, Alice saw no other loved ones. No other husbands, no wives, no children or grandchildren, no friends.
“We also have a highly trained medical staff should any of our residents require additional care.”
By the light of the silvery moon.
“Do you have any residents here under the age of sixty?”
“Oh no, the youngest is I think seventy. The average age is about eighty-two, eighty-three. It’s rare to see someone with Alzheimer’s younger than sixty.”
You’re looking at one right now, lady.
By the light of the silvery moon.
“How much does all of this cost?”
“I can give you a packet of information on the way out, but as of January, the Alzheimer’s Special Care Unit rate runs at two hundred eighty-five dollars a day.”
Alice did the rough math in her head. About a hundred thousand dollars a year. Multiply that by five, ten, twenty years.
“Can I answer anything else for you?”
By the light.
“No, thanks.”
She followed her tour guide back to the locked double doors and watched her type in the code.
0791925
She didn’t belong here.
IT WAS THE RAREST OF days in Cambridge, the kind of mythical day that New Englanders dreamed about but each year came to doubt the true existence of—a sunny, seventy-degree spring day. A Crayola blue sky, finally-don’t-need-a-coat spring day. A day not to be wasted sitting in an office, especially if you had Alzheimer’s.
She deviated a couple of blocks southeast of the Yard and walked into Ben & Jerry’s with the giddy thrill of a teenager playing hooky.
“I’ll have a triple-scoop Peanut Butter Cup in a cone, please.”
Hell, I’m on Lipitor.
She beheld her giant, heavy cone as if it were an Oscar, paid with a five-dollar bill, dropped the change in the Tips for College jar, and continued on toward the Charles River.
She’d converted to frozen yogurt, a supposedly healthier alternative, many years ago and had forgotten how thick and creamy and purely enjoyable ice cream was. She thought about what she had just seen at the Mount Auburn Manor Nursing Center as she licked and walked. She needed a better plan, one that didn’t include her playing beanbag toss with Evelyn in the Alzheimer’s Special Care Unit. One that didn’t cost John a fortune to keep alive and safe a woman who no longer recognized him and who, in the most important ways, he didn’t recognize either. She didn’t want to be here at that point, when the burdens, both emotional and financial, grossly outweighed any benefit of sticking around.
She was making mistakes and struggling to compensate for them, but she felt sure that her IQ still fell at least a standard deviation above the mean. And people with average IQs didn’t kill themselves. Well, some did, but not for reasons having to do with IQ.
Despite the escalating erosion of her memory, her brain still served her well in countless ways. For example, at this very moment, she ate her ice cream without dripping any of it onto the cone or her hand by using a lick-and-turn technique that had become automatic to her as a child and was probably stored somewhere near the information for how to ride a bike and how to tie a shoe. Meanwhile, she stepped off the curb and crossed the street, her motor cortex and cerebellum solving the complex mathematical equations necessary to move her body to the other side without falling over or getting hit by a passing car. She recognized the sweet smell of narcissus and a brief waft of curry emanating from the Indian restaurant on the corner. With each lick, she savored the delicious tastes of chocolate and peanut butter, demonstrating the intact activation of her brain’s pleasure pathways, the
same ones required for enjoying sex or a good bottle of wine.
But at some point, she would forget how to eat an ice-cream cone, how to tie her shoe, and how to walk. At some point, her pleasure neurons would become corrupted by an onslaught of aggregating amyloid, and she’d no longer be capable of enjoying the things she loved. At some point, there would simply be no point.
She wished she had cancer instead. She’d trade Alzheimer’s for cancer in a heartbeat. She felt ashamed for wishing this, and it was certainly a pointless bargaining, but she permitted the fantasy anyway. With cancer, she’d have something that she could fight. There was surgery, radiation, and chemotherapy. There was the chance that she could win. Her family and the community at Harvard would rally behind her battle and consider it noble. And even if defeated in the end, she’d be able to look them knowingly in the eye and say good-bye before she left.
Alzheimer’s disease was an entirely different kind of beast. There were no weapons that could slay it. Taking Aricept and Namenda felt like aiming a couple of leaky squirt guns in the face of a blazing fire. John continued to probe into the drugs in clinical development, but she doubted that any of them were ready and capable of making a significant difference for her, else he would already have been on the phone with Dr. Davis, insisting on a way to get her on them. Right now, everyone with Alzheimer’s faced the same outcome, whether they were eighty-two or fifty, resident of the Mount Auburn Manor or full professor of psychology at Harvard University. The blazing fire consumed all. No one got out alive.
And while a bald head and a looped ribbon were seen as badges of courage and hope, her reluctant vocabulary and vanishing memories advertised mental instability and impending insanity. Those with cancer could expect to be supported by their community. Alice expected to be outcast. Even the well-intentioned and educated tended to keep a fearful distance from the mentally ill. She didn’t want to become someone people avoided and feared.