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

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.