“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.