APRIL 2005
The energy required to write her speech, to deliver it well, and to shake hands and converse articulately with what seemed like hundreds of enthusiastic attendees at the Dementia Care Conference would have been enormous for someone without Alzheimer’s disease. For someone with Alzheimer’s, it was beyond enormous. She managed to function for some time afterward on the adrenaline high, the memory of the applause, and a renewed confidence in her inner status. She was Alice Howland, brave and remarkable hero.
But the high wasn’t sustainable, and the memory faded. She lost a little of her confidence and status when she brushed her teeth with moisturizer. She lost a bit more when she tried all morning to call John with the television remote control. She lost the last of it when her own unpleasant body odor informed her that she hadn’t bathed in days, but she couldn’t muster up the courage or knowledge she needed to step into the tub. She was Alice Howland, Alzheimer’s victim.
Her energy depleted with no reserve to draw upon, her euphoria waned, and the memory of her victory and confidence stolen, she suffered under an overwhelming, exhausting heaviness. She slept late and stayed in bed hours after waking. She sat on her couch and cried without specific reason. No amount of sleep or crying replenished her.
John woke her from a dead sleep and dressed her. She let him. He didn’t tell her to brush her hair or teeth. She didn’t care. He hurried her into the car. She leaned her forehead against the cold window. The world outside looked bluish gray. She didn’t know where they were going. She felt too indifferent to ask.
John pulled into a parking garage. They got out and entered a building through a door in the garage. The white fluorescent lighting hurt her eyes. The wide hallways, the elevators, the signs on the walls: RADIOLOGY, SURGERY, OBSTETRICS, NEUROLOGY. Neurology.
They entered a room. Instead of the waiting room she expected to see, she saw a woman sleeping in a bed. She had swollen, closed eyes, and IV tubing taped to her hand.
“What’s wrong with her?” whispered Alice.
“Nothing, she’s just tired,” said John.
“She looks terrible.”
“Shh, you don’t want her to hear that.”
The room didn’t look like a hospital room. It contained another bed, smaller and unmade, next to the one the woman was sleeping in, a large television in the corner, a lovely vase of yellow and pink flowers on a table, and hardwood floors. Maybe this wasn’t a hospital. It could be a hotel. But then, why would the woman have that tube in her hand?
An attractive young man came in with a tray of coffee. Maybe he’s her doctor. He wore a Red Sox hat, jeans, and a Yale T-shirt. Maybe he’s room service.
“Congratulations,” whispered John.
“Thanks. You just missed Tom. He’ll be back this afternoon. Here, I got everyone coffee and a tea for Alice. I’ll go get the babies.”
The young man knew her name.
The young man returned rolling a cart carrying two clear plastic, rectangular tubs. Each tub contained a tiny baby, their bodies entirely swaddled in white blankets and the tops of their heads covered in white hats, so that only their faces showed.
“I’m going to wake her. She wouldn’t want to sleep through you meeting them,” said the young man. “Honey, wake up, we have visitors.”
The woman woke up reluctantly, but when she saw Alice and John, an excitement entered her tired eyes and enlivened her. She smiled, and her face seemed to snap into place. Oh my, that’s Anna!
“Congratulations, baby,” said John. “They’re beautiful,” and he leaned down over her and kissed her forehead.
“Thanks, Dad.”
“You look great. How are you feeling, okay?” asked John.
“Thanks, I’m okay, just exhausted. Ready, here they are. This is Allison Anne, and this little guy is Charles Thomas.”
The young man handed one of the babies to John. He lifted the other baby, the one with a pink ribbon tied to its hat, and presented it to Alice.
“Would you like to hold her?” asked the young man.
Alice nodded.
She held the tiny, sleeping baby, her head in the crook of her elbow, her bum in her hand, her body up against her chest, her ear against her heart. The tiny, sleeping baby breathed tiny, shallow breaths through tiny, round nostrils. Alice instinctively kissed her blotchy pink, pudgy cheek.
“Anna, you had your babies,” said Alice.
“Yes, Mom, you’re holding your granddaughter, Allison Anne,” said Anna.
“She’s perfect. I love her.”
My granddaughter. She looked at the baby with the blue ribbon in John’s arms. My grandson.
“And they won’t get Alzheimer’s like I did?” asked Alice.
“No, Mom, they won’t.”
Alice inhaled deeply, breathing in the scrumptious smell of her beautiful granddaughter, filling herself with a sense of relief and peace she hadn’t known in a long time.
“MOM, I GOT INTO NYU and Brandeis University.”
“Oh, that’s so exciting. I remember getting into school. What are you going to study?” asked Alice.
“Theater.”
“That’s wonderful. I used to go to Harvard. I loved it there. What school did you say you’re going to?”
“I don’t know yet. I got into NYU and Brandeis.”
“Which one do you want to go to?”
“I’m not sure. I talked to Dad, and he really wants me to go to NYU.”
“Do you want to go to NYU?”
“I don’t know. It has the better reputation, but I like Brandeis better for me. I’d be near Anna and Charlie and the babies, and Tom, and you and Dad, if you stay.”
“If I stay where?” asked Alice.
“Here, in Cambridge.”
“Where else would I be?”
“New York.”
“I’m not going to be in New York.”
They sat next to each other on a couch folding baby clothes, separating the pinks from the blues. The television flashed images at them without the volume.
“It’s just, if I accept at Brandeis, and you and Dad move to New York, then I’ll feel like I’m in the wrong place, like I made the wrong decision.”
Alice stopped folding and looked at the woman. She was young, skinny, pretty. She was also tired and conflicted.
“How old are you?” asked Alice.
“Twenty-four.”
“Twenty-four. I loved being twenty-four. You have your whole life in front of you. Anything’s possible. Are you married?”
The pretty, conflicted woman stopped folding and faced Alice squarely. She locked in on Alice’s eyes. The pretty, conflicted woman had searching, honest, peanut butter brown eyes.
“No, I’m not married.”
“Kids?”
“No.”
“Then, you should do exactly what you want.”
“But what if Dad decides to take the job in New York?”
“You can’t make this kind of decision based on what other people might or might not do. This is your decision, your education. You’re a grown woman, you don’t have to do what your father wants. Make it based on what’s right for your life.”
“Okay, I will. Thank you.”
The pretty woman with the lovely peanut butter eyes let out an amused laugh and a sigh and resumed folding.
“We’ve come a long way, Mom.”
Alice didn’t understand what she meant. “You know,” she said, “you remind me of my students. I used to be a student adviser. I was pretty good at it.”
“Yes, you were. You still are.”
“What’s the name of the school you want to go to?”
“Brandeis.”
“Where’s that?”
“In Waltham, only a few minutes from here.”
“And what are you going to study?”
“Acting.”
“That’s wonderful. Will you act in plays?”
“I will.”
“Shakespeare?”
“Yes.”
“I love Shakespeare, especially the tragedies.”
“Me, too.”
The pretty woman moved over and hugged Alice. She smelled fresh and clean, like soap. Her hug penetrated Alice much like her peanut butter eyes had. Alice felt happy and close to her.
“Mom, please don’t move to New York.”
“New York? Don’t be silly. I live here. Why would I move to New York?”
“I DON’T KNOW HOW YOU do this,” said the actress. “I was up with her most of the night, and I feel delirious. I made her scrambled eggs, toast, and tea at three a.m.”
“I was up then. If we could get you to lactate, then you could help me feed one of these guys,” said the mother of the babies.
The mother was sitting on the couch next to the actress, breast-feeding the baby in blue. Alice held the baby in pink. John walked in, showered and dressed, holding a coffee mug in one hand and a newspaper in the other. The women were wearing pajamas.
“Lyd, thanks for getting up last night. I really needed the sleep,” said John.
“Dad, how on earth do you think you can go to New York and do this without our help?” asked the mother.
“I’m going to hire a home health aide. I’m looking to find someone starting now actually.”
“I don’t want strangers taking care of her. They’re not going to hug her and love her like we do,” said the actress.
“And a stranger isn’t going to know her history and memories like we do. We can sometimes fill in her holes and read her body language, and that’s because we know her,” said the mother.
“I’m not saying that we won’t still take care of her, I’m just being realistic and practical. We don’t have to shoulder this entirely ourselves. You’ll be going back to work in a couple of months and coming home every night to two babies you haven’t seen all day.
“And you’re starting school. You keep talking about how intense the program is. Tom’s in surgery as we speak. You’re all about to be busier than you’ve ever been, and your mother would be the last person to want you to compromise the quality of your own lives for her. She’d never want to be a burden to you.”
“She’s not a burden, she’s our mother,” said the mother.
They were talking too quickly and using too many pronouns. And the baby in pink had begun to fuss and cry, distracting her. Alice couldn’t figure out what or who they were talking about. But she could tell by their facial expressions and tones that it was a serious argument. And the women in pajamas were on the same side.
“Maybe it makes more sense for me to take a longer maternity leave. I’m feeling a little rushed, and Charlie’s okay with me taking more time, and it makes sense for being around for Mom.”
“Dad, this is our last chance to spend time with her. You can’t go to New York, you can’t take that away.”
“Look, if you’d accepted at NYU instead of Brandeis, you could’ve spent all the time you wanted with her. You made your choice, I’m making mine.”
“Why doesn’t Mom get a say in this choice?” asked the mother.
“She doesn’t want to live in New York,” said the actress.
“You don’t know what she wants,” said John.
“She’s said she doesn’t want to. Go ahead and ask her. Just because she has Alzheimer’s doesn’t mean she doesn’t know what she does and doesn’t want. At three in the morning, she wanted scrambled eggs and toast, and she didn’t want cereal or bacon. And she definitely didn’t want to go back to bed. You’re choosing to dismiss what she wants because she has Alzheimer’s,” said the actress.
Oh, they’re talking about me.
“I’m not dismissing what she wants. I’m doing the best I can to do what’s right for both of us. If she got everything she unilaterally wanted, we wouldn’t even be having this conversation.”
“What the hell does that mean?” asked the mother.
“Nothing.”
“It’s like you don’t get that she’s not gone yet, like you think her time left isn’t meaningful anymore. You’re acting like a selfish child,” said the mother.
The mother was crying now, but she seemed angry. She looked and sounded like Alice’s sister, Anne. But she couldn’t be Anne. That was impossible. Anne didn’t have any children.
“How do you know she thinks this is meaningful? Look, it’s not just me. The old her, before this, she wouldn’t want me to give this up. She didn’t want to be here like this,” said John.
“What does that mean?” asked the crying woman who looked and sounded like Anne.
“Nothing. Look, I understand and appreciate everything you’re saying. But I’m trying to make a decision that’s rational and not emotional.”
“Why? What’s wrong with being emotional about this? Why is that a negative thing? Why isn’t the emotional decision the right decision?” asked the woman who wasn’t crying.
“I haven’t come to a final decision yet, and the two of you aren’t going to bully me into one. You don’t know everything.”
“So tell us, Dad, tell us what we don’t know,” said the crying woman, her voice shaking and threatening.
The threat silenced him for a moment.
“I don’t have time for this now, I have a meeting.”
He got up and abandoned the argument, leaving the women and babies alone. He slammed the front door as he left the house, startling the baby in blue, which had just fallen asleep in the mother’s arms. It wailed. As if it were contagious, the other woman began crying, too. Maybe she just felt left out. Now, everyone was crying—the pink baby, the blue baby, the mother, and the woman next to the mother. Everyone except Alice. She wasn’t sad or angry or defeated or scared. She was hungry.
“What are we having for dinner?”