FEBRUARY 2005
She slumped into the chair next to John, across from Dr. Davis, emotionally weary and intellectually tapped. She’d been taking various neuropsychological tests in that little room with that woman, the woman who administered the neuropsychological tests in the little room, for a torturously long time. The words, the information, the meaning in the woman’s questions and in Alice’s own answers were like soap bubbles, the kind children blew out of those little plastic wands, on a windy day. They drifted away from her quickly and in dizzying directions, requiring enormous strain and concentration to track. And even if she managed to actually hold a number of them in her sight for some promising duration, it was invariably too soon that pop! they were gone, burst without obvious cause into oblivion, as if they’d never existed. And now it was Dr. Davis’s turn with the wand.
“Okay, Alice, can you spell the word water backwards for me?” he asked.
She would have found this question trivial and even insulting six months ago, but today, it was a serious question to be tackled with serious effort. She felt only marginally worried and humiliated by this, not nearly as worried and humiliated as she would’ve felt six months ago. More and more, she was experiencing a growing distance from her self-awareness. Her sense of Alice—what she knew and understood, what she liked and disliked, how she felt and perceived—was also like a soap bubble, ever higher in the sky and more difficult to identify, with nothing but the thinnest lipid membrane protecting it from popping into thinner air.
Alice spelled water forward first, to herself, extending the five fingers on her left hand, one for each letter, as she did.
“R.” She folded down her pinkie. She spelled it forward to herself again, stopping at her ring finger, which she then folded down.
“E.” She repeated the same process.
“T.” She held her thumb and pointer finger like a gun. She whispered, “A, W,” to herself.
“A, W.”
She smiled, her left hand raised in a victorious fist, and looked at John. He spun his wedding ring and gave a dispirited smile.
“Good job,” said Dr. Davis. He smiled widely and seemed impressed. Alice liked him.
“Now, I’d like you to point to the window after you touch your right cheek with your left hand.”
She lifted her left hand to her face. Pop!
“I’m sorry, can you tell me the directions again?” asked Alice, her left hand still poised in front of her face.
“Sure,” Dr. Davis obliged knowingly, like a parent who let a child get away with peeking at the top card in a game of cards or inching across the start line before yelling “go.” “Point to the window after you touch your right cheek with your left hand.”
Her left hand on her right cheek before he finished talking, she jerked her right arm at the window as fast as she could and let out a huge exhale.
“Good, Alice,” said Dr. Davis, smiling again.
John offered no praise, no hint of pleasure or pride.
“Okay, now I’d like you to tell me the name and address I asked you to remember earlier.”
The name and address. She had a loose sense of it, like the feeling of awakening from a night’s sleep and knowing she’d had a dream, maybe even knowing it was about a particular thing, but no matter how hard she thought about it, the details of the dream eluded her. Gone forever.
“It’s John Somebody. You know, you ask me this every time, and I’ve never been able to remember where that guy lives.”
“Okay, let’s take a guess. Was it John Black, John White, John Jones, or John Smith?”
She had no idea but didn’t mind playing along.
“Smith.”
“Does he live on East Street, West Street, North Street, or South Street?”
“South Street.”
“Was the town Arlington, Cambridge, Brighton, or Brookline?”
“Brookline.”
“Okay, Alice, last question, where’s my twenty-dollar bill?”
“In your wallet?”
“No, earlier, I hid a twenty-dollar bill somewhere in the room, do you remember where I put it?”
“You did this while I was here?”
“Yes. Any ideas at all come to mind? I’ll let you keep it if you find it.”
“Well, if I’d known that, I would’ve been sure to figure out a way to remember it.”
“I’m sure you would’ve. Any idea where it is?”
She saw the focus of his stare deviate to her right, just over her shoulder, for the briefest moment before settling back on her. She twisted around. Behind her, there was a whiteboard on the wall with three words scrawled on it in red marker: Glutamate. LTP. Apoptosis. The red marker lay on a tray at the bottom, right next to a folded twenty-dollar bill. Delighted, she stepped over to the whiteboard and claimed her prize.
Dr. Davis chuckled. “If all my patients were as smart as you, I’d go broke.”
“Alice, you can’t keep that, you saw him look at it,” said John.
“I won it,” said Alice.
“It’s okay, she found it,” said Dr. Davis.
“Should she be like this after only a year and being on medication?” asked John.
“Well, there are probably a few things going on here. Her illness probably started long before she was diagnosed last January. She and you and your family and her colleagues probably disregarded any number of symptoms as fluke, or normal, or chalked them up to stress, not enough sleep, too much to drink, and on and on. This could’ve gone on easily for a year or two or longer.
“And she’s incredibly bright. If the average person has, say for simplicity, ten synapses that lead to a piece of information, Alice could easily have fifty. When the average person loses those ten synapses, that piece of information is inaccessible to them, forgotten. But Alice can lose those ten and still have forty other ways of getting to the target. So her anatomical losses aren’t as profoundly and functionally noticeable at first.”
“But by now, she’s lost a lot more than ten,” said John.
“Yes, I’m afraid she has. Her recent memory is now falling in the bottom three percent of those able to complete the tests, her language processing has degraded considerably, and she’s losing self-awareness, all as we’d unfortunately expect to see.
“But she’s also incredibly resourceful. She used a number of inventive strategies today to answer questions correctly that she couldn’t actually remember correctly.”
“But there were a lot of questions that she couldn’t answer correctly, regardless,” said John.
“Yes, that’s true.”
“It’s just getting so much worse, so quickly. Can we up the dosage of either the Aricept or the Namenda?” asked John.
“No, she’s at the maximum dosage already for both. Unfortunately, this is a progressive, degenerative disease with no cure. It gets worse, despite any medication we have right now.”
“And it’s clear she’s either getting the placebo or this Amylix drug doesn’t work,” said John.
Dr. Davis paused as if considering whether to agree or disagree with this.
“I know you’re discouraged. But I’ve often seen unexpected periods of plateau, where it seems to stall, and this can last for some time.”
Alice closed her eyes and pictured herself standing solidly in the middle of a plateau. A beautiful mesa. She could see it, and it was worth hoping for. Could John see it? Could he still hope for her, or had he already given up? Or worse, did he actually hope for her rapid decline, so he could take her, vacant and complaisant, to New York in the fall? Would he choose to stand with her on the plateau or push her down the hill?
She folded her arms, unfolded her crossed legs, and planted her feet flat on the floor.
“Alice, are you still running?” asked Dr. Davis.
“No, I stopped a while ago. Between John’s schedule and my lack of coordination—I can’t seem to see curbs or bumps in the road, and I misjudge distances. I had some terrible falls. Even at home, I keep forgetting about the raised thingy in all the doorways, and I trip into every room I go in. I’ve got tons of bruises.”
“Okay, John, I would either remove the doorway thingies or paint them a contrasting color, something bright, or cover them in brightly colored tape, so Alice can notice them. Otherwise, they just blend into the floor.”
“All right.”
“Alice, tell me about your support group,” said Dr. Davis.
“There are four of us. We meet once a week for a few hours at each other’s houses, and we email each other every day. It’s wonderful, we talk about everything.”
Dr. Davis and that woman in that little room had asked her a lot of probing questions today, questions designed to measure the precise level of destruction inside her head. But no one understood what was still alive inside her head better than Mary, Cathy, and Dan.
“I want to thank you for taking the initiative and filling the obvious gap we have in our support system here. If I get any new early stage or early-onset patients, can I tell them how to get in touch with you?”
“Yes, please do. You should also tell them about DASNI. It’s the Dementia Advocacy and Support Network International. It’s an online forum for people with dementia. I’ve met over a dozen people there, from all over the country and Canada and the UK and Australia. Well, I’ve never actually met them, it’s all online, but I feel like I know them and they know me more intimately than many of the people I’ve known my whole life. We don’t waste any time, we don’t have enough of it. We talk about the stuff that matters.”
John shifted in his seat and jiggled his leg.
“Thank you, Alice, I’ll add that website to our standard packet of information. How about you, John? Have you yet talked with our social worker here or gone to any of the caregivers’ support group meetings?”
“No, I haven’t. I’ve had coffee a couple of times with the spouses of her support group people, but otherwise, no.”
“You might want to consider getting some support yourself. You’re not the one with the disease, but you’re living with it, too, by living with Alice, and it’s hard on the caregivers. I see the toll it takes every day with the family members who come in. There’s Denise Daddario, the social worker, here and the MGH Caregivers’ Support Group, and I know that the Massachusetts Alzheimer’s Association has many local caregiver groups. The resources are there for you, so don’t hesitate if you need them.”
“All right.”
“Speaking of the Alzheimer’s Association, Alice, I just received their program for the annual Dementia Care Conference, and I see you’re giving the opening plenary presentation,” said Dr. Davis.
The Dementia Care Conference was a national meeting for professionals involved in the care of people with dementia and their families. Neurologists, general practice physicians, geriatric physicians, neuropsychologists, nurses, and social workers all gathered in one place to exchange information on approaches to diagnosis, treatment, and patient care. It sounded similar to Alice’s support group and DASNI, but bigger and for those without dementia. This year’s meeting was to be held next month in Boston.
“Yes,” said Alice. “I meant to ask, will you be there?”
“I will, I’ll be sure to be in the front row. You know, they’ve never asked me to give a plenary presentation,” said Dr. Davis. “You’re a brave and remarkable woman, Alice.”
His compliment, genuine and not patronizing, was just the boost her ego needed after having been so ruthlessly pummeled by so many tests today. John spun his ring. He looked at her with tears in his eyes and a clenched smile that confused her.