NOVEMBER 2004
The movies that John had bought over the summer now fell into the same unfortunate category as the abandoned books they’d replaced. She could no longer follow the thread of the plot or remember the significance of the characters if they weren’t in every scene. She could appreciate small moments but retained only a general sense of the film after the credits rolled. That movie was funny. If John or Anna watched with her, they would many times roar with laughter or jump with alarm or cringe with disgust, reacting in an obvious, visceral way to something that happened, and she wouldn’t understand why. She would join in, faking it, trying to protect them from how lost she was. Watching movies made her keenly aware of how lost she was.
The DVDs Lydia had made came at just the right time. Each story told by John and the kids ran only a few minutes long, so she could absorb each one, and she didn’t have to actively hold the information in any particular story to understand or enjoy the others. She watched them over and over. She didn’t remember everything they talked about, but this felt completely normal, for each of her children and John didn’t remember all of the details either. And when Lydia asked them all to recount the same event, each remembered it somewhat differently, omitting some parts, exaggerating others, emphasizing their own individual perspectives. Even biographies not saturated with disease were vulnerable to holes and distortions.
She could only stomach watching the Alice Howland video once. She used to be so eloquent, so comfortable talking in front of any audience. Now, she overused the word thingy and repeated herself an embarrassing number of times. But she felt grateful to have it, her memories, reflections, and advice recorded and pinned down, safe from the molecular mayhem of Alzheimer’s disease. Her grandchildren would watch it someday and say, “That’s Grandma when she could still talk and remember things.”
She had just finished watching Alice and John. She remained on the couch with a blanket on her lap after the television screen faded to black and listened. The quiet pleased her. She breathed and thought of nothing for several minutes but the sound of the ticking clock on the fireplace mantel. Then, suddenly, the ticking took on meaning, and her eyes popped open.
She looked at the hands. Ten minutes until ten o’clock. Oh my god, what am I still doing here? She threw the blanket onto the floor, crammed her feet into her shoes, ran into the study, and clicked her laptop bag shut. Where’s my blue bag? Not on the chair, not on the desk, not in the desk drawers, not in the laptop bag. She jogged up to her bedroom. Not on her bed, not on the night table, not on the dresser, not in the closet, not on the desk. She was standing in the hallway, retracing her whereabouts in her boggled mind, when she saw it, hanging on the bathroom doorknob.
She unzipped it. Cell phone, BlackBerry, no keys. She always put them in there. Well, that wasn’t entirely true. She always meant to put them in there. Sometimes, she put them in her desk drawer, the silverware drawer, her underwear drawer, her jewelry box, the mailbox, and any number of pockets. Sometimes, she simply left them in the keyhole. She hated to think of how many minutes each day she spent looking for her own misplaced things.
She bolted back downstairs to the living room. No keys, but she found her coat on the wing chair. She put it on and shoved her hands in the pockets. Keys!
She raced to the front hallway, but then stopped before she could reach the door. It was the strangest thing. There was a large hole in the floor just in front of the door. It spanned the width of the hallway and was about eight or nine feet in length, with nothing but the dark basement below it. It was impassable. The front hall floorboards were warped and creaky, and she and John had talked recently about replacing them. Had John hired a contractor? Had someone been here today? She couldn’t remember. Whatever the reason, there was no using the front door until the hole was fixed.
On her way to the back door, the phone rang.
“Hi, Mom. I’ll be over around seven, and I’ll bring dinner.”
“Okay,” said Alice, a slight rise in her tone.
“It’s Anna.”
“I know.”
“Dad’s in New York until tomorrow, remember? I’m sleeping over tonight. I can’t get out of work before six thirty, though, so wait for me to eat. Maybe you should write this down on the whiteboard on the fridge.”
She looked over at the whiteboard.
DO NOT GO RUNNING WITHOUT ME.
Provoked, she wanted to scream into the phone that she didn’t need a babysitter, and she could manage just fine alone in her own house. She breathed instead.
“Okay, see you later.”
She hung up the phone and congratulated herself on still having editorial control over her raw emotions. Someday soon, she wouldn’t. She would enjoy seeing Anna, and it would be good not to be alone.
She had her coat on and her laptop and baby blue bag slung over her shoulder. She looked out the kitchen window. Windy, damp, gray. Morning, maybe? She didn’t feel like going outside, and she didn’t feel like sitting in her office. She felt bored, ignored, and alienated in her office. She felt ridiculous there. She didn’t belong there anymore.
She removed her bags and coat and headed for the study, but a sudden thud and clink made her backtrack to the front hallway. The mail had just been delivered through the slot in the door, and it lay on top of the hole, somehow hovering there. It had to be balancing on an underlying beam or floorboard that she couldn’t see. Floating mail. My brain is fried! She retreated into the study and tried to forget about the gravity-defying hole in the front hallway. It was surprisingly difficult.
SHE SAT IN HER STUDY, hugging her knees, staring out the window at the darkened day, waiting for Anna to come over with dinner, waiting for John to return from New York so she could go for a run. She was sitting and waiting. She was sitting and waiting to get worse. She was sick of just sitting and waiting.
She was the only person she knew with early-onset Alzheimer’s disease at Harvard. She was the only person she knew anywhere with early-onset Alzheimer’s. Surely, she wasn’t the only one anywhere. She needed to find her new colleagues. She needed to inhabit this new world she found herself in, this world of dementia.
She typed the words “early-onset Alzheimer’s disease” into Google. It pulled up a lot of facts and statistics.
There are an estimated five hundred thousand people in the United States with early-onset Alzheimer’s disease.
Early-onset is defined as Alzheimer’s under the age of sixty-five.
Symptoms can develop in the thirties and forties.
It pulled up sites with lists of symptoms, genetic risk factors, causes, and treatments. It pulled up articles about research and drug discovery. She’d seen all this before.
She added the word “support” to her Google search and hit the return key.
She found forums, links, resources, message boards, and chat rooms. For caregivers. Caregiver help topics included visiting the nursing facility, questions about medications, stress relief, dealing with delusions, dealing with night wandering, coping with denial and depression. Caregivers posted questions and answers, commiserating about and troubleshooting issues regarding their eighty-one-year-old mothers, their seventy-four-year-old husbands, and their eighty-five-year-old grandmothers with Alzheimer’s disease.
What about support for the people with Alzheimer’s disease? Where are the other fifty-one-year-olds with dementia? Where are the other people who were in the middle of their careers when this diagnosis ripped their lives right out from under them? She didn’t deny that getting Alzheimer’s was tragic at any age. She didn’t deny that caregivers needed support. She didn’t deny that they suffered. She knew that John suffered. But what about me?
She remembered the business card of the social worker at Mass General Hospital. She found it and dialed the number.
“Denise Daddario.”
“Hi, Denise, this is Alice Howland. I’m a patient of Dr. Davis, and he gave me your card. I’m fifty-one, and I was diagnosed with early-onset Alzheimer’s almost a year ago. I was wondering, does MGH run any sort of support group for people with Alzheimer’s?”
“No, unfortunately we don’t. We have a support group, but it’s only for caregivers. Most of our patients with Alzheimer’s wouldn’t be capable of participating in that kind of forum.”
“But some would.”
“Yes, but I’m afraid we don’t have the numbers to justify the resources it would take to get that kind of group up and running.”
“What kinds of resources?”
“Well, with our caregivers’ support group, about twelve to fifteen people meet every week for a couple of hours. We have a room reserved, coffee, pastries, a couple of people on staff who act as facilitators, and a guest speaker once a month.”
“What about just an empty room where people with early-onset dementia can meet and talk about what we’re experiencing?”
I can bring the coffee and jelly donuts, for god’s sake.
“We’d need someone on staff at the hospital to oversee it, and we unfortunately don’t have anyone available right now.”
How about one of the two facilitators from your caregivers’ support group?
“Can you give me the contact information for the patients you know of with early-onset dementia so I can try to organize something on my own?”
“I’m afraid I can’t give out that information. Would you like to make an appointment to come in and talk with me? I have an opening at ten in the morning on Friday, December seventeenth.”
“No thanks.”
A NOISE AT THE FRONT door woke her from her nap on the couch. The house was cold and dark. The front door squeaked as it opened.
“Sorry I’m late!”
Alice rose and walked to the hallway. Anna stood there with a big brown paper bag in one hand and a jumbled pile of mail in the other. She was standing on the hole!
“Mom, all the lights are off in here. Were you sleeping? You shouldn’t be napping this late in the day, you’ll never sleep tonight.”
Alice walked over to her and crouched down. She put her hand on the hole. Only it wasn’t empty space she felt. She ran her fingers over the looped wool of a black rug. Her black hallway rug. It’d been there for years. She smacked it with her open hand so hard the sound she made echoed.
“Mom, what are you doing?”
Her hand stung, she was too tired to endure the humiliating answer to Anna’s question, and an overpowering peanut smell coming from the bag disgusted her.
“Leave me alone!”
“Mom, it’s okay. Let’s go in the kitchen and have dinner.”
Anna put the mail down and reached for her mother’s hand, the hand that stung. Alice flung it away from her and screamed.
“Leave me alone! Get out of my house! I hate you! I don’t want you here!”
Her words hit Anna’s face harder than if she’d slapped her. Through the tears that streamed down it, Anna’s expression clenched into calm resolve.
“I brought dinner, I’m starving, and I’m staying. I’m going into the kitchen to eat, and then I’m going to bed.”
Alice stood in the hallway alone, fury and fight raging madly through her veins. She opened the door and began pulling at the rug. She yanked with all her strength and was knocked down. She got up and pulled and twisted and wrestled it until it was entirely outside. Then, she kicked and screamed wildly at it until it limped down the front steps and lay lifeless on the sidewalk.
Alice, answer the following questions:
- 1. What month is it?
- 2. Where do you live?
- 3. Where is your office?
- 4. When is Anna’s birthday?
- 5. How many children do you have?
If you have trouble answering any of these, go to the file named “Butterfly” on your computer and follow the instructions there immediately.
November
Cambridge
Harvard
September
Three