Still Alice Page 0,65
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