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
DECEMBER 2004
Dan’s thesis numbered 142 pages, not including references. Alice hadn’t read anything that long in a long time. She sat on the couch with Dan’s words in her lap, a red pen balanced on her right ear, and a pink highlighter in her right hand. She used the red pen for editing and the pink highlighter for keeping track of what she’d already read. She highlighted anything that struck her as important, so when she needed to backtrack, she could limit her rereading to the colored words.
She became hopelessly stalled on page twenty-six, which was saturated in pink. Her brain felt overwhelmed and begged her for rest. She imagined the pink words on the page transforming into sticky pink cotton candy in her head. The more she read, the more she needed to highlight to understand and remember what she was reading. The more she highlighted, the more her head became packed with pink, woolly sugar, clogging and muffling the circuits in her brain that were needed to understand and remember what she was reading. By page twenty-six, she understood nothing.
Beep, beep.
She tossed Dan’s thesis onto the coffee table and went to the computer in the study. She found one new email in her inbox, from Denise Daddario.
Dear Alice,
I’ve shared your idea for an early-stage dementia support group with the other early-onsetters here in our unit and with the folks at Brigham and Women’s Hospital. I’ve heard back from three people who are local and very interested in this