by Lisa Genova
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.
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 wer
e, 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.