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 idea. They’ve given me permission to give you their names and contact information (see attachment).
You might also want to contact the Mass Alzheimer’s Association. They may know of others who’d want to meet with you.
Keep me posted with how it goes, and let me know if I can provide you with any other information or advice. I’m sorry we couldn’t formally do more for you here.
Good luck!
Denise Daddario
She opened the attachment.
Mary Johnson, age fifty-seven, Frontotemporal lobe dementia
Cathy Roberts, age forty-eight, Early-onset Alzheimer’s disease
Dan Sullivan, age fifty-three, Early-onset Alzheimer’s disease
There they were, her new colleagues. She read their names over and over. Mary, Cathy, and Dan. Mary, Cathy, and Dan. She began to feel the kind of wondrous excitement mixed with barely suppressed dread she’d experienced in the weeks before her first days of kindergarten, college, and graduate school. What did they look like? Were they still working? How long had they been living with their diagnoses? Were their symptoms the same, milder, or worse? Were they anything like her? What if I’m much further along than they are?
Dear Mary, Cathy, and Dan,
My name is Alice Howland. I am fifty-one years old and was diagnosed with early-onset Alzheimer’s disease last year. I was a psychology professor at Harvard University for twenty-five years but essentially failed out of my position due to my symptoms this September.
Now I’m home and feeling really alone in this. I called Denise Daddario at MGH for information on an early-stage dementia support group. They only have one for caregivers, nothing for us. But she gave me your names.
I’d like to invite you all to my house for tea, coffee, and conversation this Sunday, December 5, at 2:00. Your caregivers are welcome to come and stay if you’d like. Attached are my address and directions.
I’m looking forward to meeting you,
Alice
Mary, Cathy, and Dan. Mary, Cathy, and Dan. Dan. Dan’s thesis. He’s waiting for my edits. She returned to the living room couch and opened Dan’s thesis to page twenty-six. The pink rushed into her head. Her head ached. She wondered if anyone had replied yet. She abandoned Dan’s thingy before she even finished the thought.
She clicked on her inbox. Nothing new.
Beep, beep.
She picked up the phone.
“Hello?”
Dial tone. She’d hoped it was Mary, Cathy, or Dan. Dan. Dan’s thesis.
Back on the couch, she looked poised and active with the highlighter in her hand, but her eyes weren’t focused on the letters on the page. Instead, she daydreamed.
Could Mary, Cathy, and Dan still read twenty-six pages and understand and remember all that they read? What if I’m the only one who thinks the hallway rug could be a hole? What if she was the only one declining? She could feel herself declining. She could feel herself slipping into that demented hole. Alone.
“I’m alone, I’m alone, I’m alone,” she moaned, sinking further into the truth of her lonely hole each time she heard her own voice say the words.
Beep, beep.
The doorbell snapped her out of it. Were they here? Had she invited them over today?
“Just a minute!”
She rubbed her eyes with her sleeves, combed her fingers through her matted hair as she walked, took a deep breath, and opened the door. There was no one there.
Auditory and visual hallucinations were realities for about half of people with Alzheimer’s disease, but so far she hadn’t experienced any. Or maybe she had. When she was alone, there wasn’t any clear way of knowing whether what she experienced was reality or her reality with Alzheimer’s. It wasn’t as if her disorientations, confabulations, delusions, and all other demented thingies were highlighted in fluorescent pink, unmistakably distinguishable from what was normal, actual, and correct. From her perspective, she simply couldn’t tell the difference. The rug was a hole. That noise was the doorbell.
She checked her inbox again. One new email.
Hi Mom,
How are you? Did you go to the lunch seminar yesterday? Did you run? My class was great, as usual. I had another audition today for a bank commercial. We’ll see. How’s Dad doing? Is he home this week? I know last month was hard. Hang in there. I’ll be home soon!
Love,
Lydia
Beep, beep.
She picked up the phone.
“Hello?”
Dial tone. She opened the top file cabinet drawer, dropped the phone inside, heard it hit the metal bottom beneath hundreds of hanging reprints, and slid the drawer shut. Wait, maybe it’s my cell phone.
“Cell phone, cell phone, cell phone,” she chanted aloud as she roamed the house, trying to keep the goal of her search present.
She checked everywhere but couldn’t find it. Then she figured out that she needed to be looking for her baby blue bag. She changed the chant.
“Blue bag, blue bag, blue bag.”
She found it on the kitchen counter, her cell phone inside, but off. Maybe the noise was someone’s car alarm locking or unlocking outside. She resumed her position on the couch and opened Dan’s thesis to page twenty-six.
“Hello?” asked a man’s voice.
Alice looked up, eyes wide, and listened, as if she’d just been summoned by a ghost.
“Alice?” asked the disembodied voice.
“Yes?”
“Alice, are you ready to go?”
John appeared in the threshold of the living room looking expectant. She was relieved but needed more information.
“Let’s go. We’re meeting Bob and Sarah for dinner, and we’re already a little late.”
Dinner. She just realized she was starving. She didn’t remember eating any food today. Maybe that was why she couldn’t read Dan’s thesis. Maybe she just needed some food. But the thought of dinner and conversation in a loud restaurant drained her further.
“I don’t want to go to dinner. I’m having a hard day.”
“I had a hard day, too. Let’s go have a nice dinner together.”
“You go. I just want to be home.”
“Come on, it’ll be fun. We didn’t go to Eric’s party. It’ll be good for you to get out, and I know they’d like to see you.”
No, they wouldn’t. They’ll be relieved that I’m not there. I’m a cotton candy pink elephant in the room. I make everyone uncomfortable. I turn dinner into a crazy circus act, everyone juggling their nervous pity and forced smiles with their cocktail glasses, forks, and knives.
“I don’t want to go. Tell them I’m sorry, but I wasn’t feeling up to it.”
Beep, beep.
She saw John hear the noise, too, and she followed him into the kitchen. He popped open the microwave oven door and pulled out a mug.
“This is freezing cold. Do you want me to reheat it?”
She must’ve made tea that morning, and she’d forgotten to drink it. Then, she must’ve put it in the microwave to reheat it and left it there.
“No, thanks.”
“All right, Bob and Sarah are probably already there waiting. Are you sure you don’t want to come?”
“I’m sure.”
“I won’t stay long.”
He kissed her and then left without her. She stood in the kitchen where he left her for a long time, holding the mug of cold tea in her hands.
SHE WAS ON HER WAY to bed, and John still hadn’t returned from dinner. The blue computer light glowing in the study caught her attention before she turned to go upstairs. She went in and checked her inbox, more out of habit than out of sincere curiosity.
There they were.
Dear Alice,
My name is Mary Johnson. I’m 57 and was diagnosed with FTD five years ago. I live on the North Shore, so not too far from you. This is such a wonderful idea. I’d love to come. My husband, Barry, will drive me. I’m not sure if he’ll want to stay. We’ve both taken an early retirement and we’re both home all the time. I think he’d like a break from me. See you soon,
Mary
Hi Alice,
I’m Dan Sullivan, 53 years old, diagnosed with EOAD 3 years ago. It runs in my family. My mother, two uncles, and one of my aunts had it, and 4 of my cousins do. So I saw this coming and have been living with it in the family since I was a kid. Funny, didn’t make the diagnosis or living with it now any easier. My wife knows where you live. Not far from MGH. Near Harvard. My daughter went to Harvard. I pray every day that she doesn’t get this.
Dan
Hi Alice,
Thank you for your email and invitation. I was diagnosed with EOAD a year ago, like you. It was almost a relief. I thought I was going crazy. I was getting lost in conversations, having trouble finishing my own sentences, forgetting my way home, couldn’t understand the checkbook anymore, was making mistakes with the kids’ schedules (I have a 15-year-old daughter and a 13-year-old son). I was only 46 when the symptoms started, so of course, no one ever thought it could be Alzheimer’s.
I think the medications help a lot. I’m on Aricept and Namenda. I have good days and bad. On the good, people and even my family use it as an excuse to think that I’m perfectly fine, even making this up! I’m not that desperate for attention! Then, a bad day hits, and I can’t think of words or concentrate and I can’t multitask at all. I feel lonely, too. I can’t wait to meet you.
Cathy Roberts
P.S. Do you know about the Dementia Advocacy and Support Network International? Go to their website: www.dasninternational.org. It’s a wonderful site for people like us in early stages and with early-onset to talk, vent, get support, and share information.
There they were. And they were coming.
MARY, CATHY, AND DAN REMOVED their coats and found seats in the living room. Their spouses kept their coats on, bid them a reluctant good-bye, and left with John for coffee at Jerri’s.
Mary had chin-length blond hair and round, chocolate brown eyes behind a pair of dark-rimmed glasses. Cathy had a smart, pleasing face, and eyes that smiled before her mouth did. Alice liked her immediately. Dan had a thick mustache, a balding head, and a stocky build. They could’ve been professors visiting from out of town, members of a book club, or old friends.
“Would anyone like something to think?” asked Alice.
They stared at her and at one another, disinclined to answer. Were they all too shy or polite to be the first to speak up?
“Alice, did you mean ‘drink’?” asked Cathy.
“Yes, what’d I say?”
“You said ‘think.’”
Alice’s face flushed. Word substitution wasn’t the first impression she’d wanted to make.
“I’d actually like a cup of thinks. Mine’s been close to empty for days, I could use a refill,” said Dan.
They laughed, and it connected them instantly. She brought in the coffee and tea as Mary was telling her story.
“I was a real estate agent for twenty-two years. I suddenly started forgetting appointments, meetings, open houses. I showed up to houses with no keys. I got lost on my way to show a property in a neighborhood I’d known forever with the client in the car with me. I drove around for forty-five minutes when it should’ve taken less than ten. I can only imagine what she was thinking.
“I started getting angry easily and blowing up at the other agents in the office. I’d always been so easygoing and well liked, and suddenly, I was becoming known for my short fuse. I was ruining my reputation. My reputation was everything. My doctor put me on an antidepressant. And when that one didn’t work, he put me on another, and another.”
“For a long time, I just thought I was overtired and multitasking too much,” said Cathy. “I was working part-time as a pharmacist, raising two kids, running the house, running around from one thing to the next like a chicken with my head cut off. I was only forty-six, so it never occurred to me that I might have dementia. Then, one day at work, I couldn’t figure out the names of the drugs, and I didn’t know how to measure out ten milliliters. Right then, I realized I was capable of giving someone the wrong amount of drug or even the wrong drug. Basically, I was capable of accidentally killing someone. So I took off my lab coat, went home early, and never went back. I was devastated. I thought I was going crazy.”
“How about you, Dan? What were the first things you noticed?” asked Mary.
“I used to be really handy around the house. Then, one day, I couldn’t figure out how to fix the things I’d always been able to fix. I always kept my workshop tidy, everything in its place. Now, it’s a total mess. I accused my friends of borrowing my tools and messing up the place and not returning them when I couldn’t find them. But it was always me. I was a firefighter. I started forgetting the names of the guys on the force. I couldn’t finish my own sentences. I forgot how to make a cup of coffee. I’d seen the same things with my mom when I was a teenager. She had early-onset AD, too.”
They shared stories of their earliest symptoms, their struggles to get a correct diagnosis, their strategies for coping and living with dementia. They nodded and laughed and cried over stories of lost keys, lost thoughts, and lost life dreams. Alice felt unedited and truly heard. She felt normal.
“Alice, is your husband still working?” asked Mary.
“Yes. He’s been buried in his research and teaching this semester. He’s been traveling a lot. It’s been hard. But we both have a sabbatical year next year. So I just have to hold on and get to the end of next semester, and we’ll be able to be home together for a whole year.”
“You can make it, you’re almost there,” said Cathy.
Just a few more months.
ANNA SENT LYDIA INTO THE kitchen to make the white chocolate bread pudding. Noticeably pregnant now and no longer nauseated, Anna seemed to eat constantly, as if on a mission to make up for calories lost during the months of morning sickness.
“I have some news,” said John. “I’ve been offered the position of chairman of the Cancer Biology and Genetics Program at Sloan-Kettering.”
“Where’s that?” asked Anna, through a mouthful of chocolate-covered cranberries.
“New York City.”
No one said a word. Dean Martin belted out “A Marshmallow World” on the stereo.
“Well, you’re not actually entertaining the idea of taking it, are you?” asked Anna.
“I am. I’ve been down there several times this fall, and it’s a perfect position for me.”
“But what about Mom?” asked Anna.
“She’s not working anymore, and she rarely goes to campus at all.”
“But she needs to be here,” said Anna.
“No, she doesn’t. She’ll be with me.”
“Oh, please! I come over at night so you can work late, and I sleep over whenever you’re out of town, and Tom comes when he can on the weekends,” said Anna. “We’re not here all the time, but—”
“That’s right, you’re not here all the time. You don’t see how bad it’s getting. She pretends to know a lot more than she does. You think she’s going to appreciate that we’re in Cambridge a year from now? She doesn’t recognize where she is now when we’re three blocks away. We could very well be in New York City, and I could tell her it’s Harvard Square, and she wouldn’t know the difference.”
“Yes, she would, Dad,” said Tom. “Don’t say that.”
“Well, we wouldn’t move before September. It’s a long ways off.”
“It doesn’t matter when it is, she needs to stay here. She’ll go downhill fast if you move away,” said Anna.
“I agree,” said Tom.
They talked about her as if she weren’t sitting in the wing chair, a few feet away. They talked about her, in front of her, as if she were deaf. They talked about her, in front of her, without including her, as if she had Alzheimer’s disease.
“This position is likely never to open up again in my lifetime, and they want me.”
“I want her to be able to see the twins,” said Anna.
“New York isn’t that far. And there’s no guarantee that you’re all going to stay in Boston.”
“I might be there,” said Lydia.
Lydia stood in the doorway between the living room and kitchen. Alice hadn’t seen her there before she spoke, and her sudden presence in the periphery startled her.
“I applied to NYU, Brandeis, Brown, and Yale. If I get into NYU and you and Mom are in New York, I could live with you and help out. And if you stay here, and I get into Brandeis or Brown, I can be around, too,” said Lydia.
Alice wanted to tell Lydia that those were excellent schools. She wanted to ask her about the programs that most interested her. She wanted to tell her that she was proud of her. But her thoughts from idea to mouth moved too slowly today, as if they had to swim miles through black river sludge before surfacing to be heard, and most of them drowned somewhere along the way.
“That’s great, Lydia,” said Tom.
“So that’s it. You’re just going to continue about your life as if Mom doesn’t have Alzheimer’s, and we don’t have anything to say about it?” asked Anna.
“I’m making plenty of sacrifices,” said John.
He’d always loved her, but she’d made it easy for him. She’d been looking at their time left together as precious time. She didn’t know how much longer she could hang on to herself, but she’d convinced herself that she could make it through their sabbatical year. One last sabbatical year together. She wouldn’t trade that in for anything.
Apparently, he would. How could he? The question raged through the black river sludge in her head unanswered. How could he? The answer it found kicked her behind the eyes and choked her heart. One of them was going to have to sacrifice everything.
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.
December
Harvard Square
Harvard
April
Three