You are hereDisappearing Act
My father and mother would often tell the story of the day they lost my grandmother in Atlantic City. They were at a casino with her and while they were gambling, the old woman wandered off. Minutes after she disappeared, they began a frantic search. When they couldn’t find her, they went to casino security with their problem. The man at the security desk was very sympathetic. He told them to follow him and took them to a room. He opened the door and revealed 25 little old ladies quietly sitting on chairs.
“Is any one of these yours?” he asked with a sigh.
When I think of the vagaries of life – and its cruelties – I often think of the comment my first improv teacher once made: “Life is a big joke – it only hurts if you don’t laugh.”
For indeed, life can be both capricious and cruel – and nowhere could I see that more than in the case of my mother, Effie. Still vigorous and youthful-looking at age 70, she was an odd combination of traits. Some called her plain-speaking and tough (she famously said to one relative who came to her with family problems, “If I were in your place, I would jump out the window”). Others called her shy and sentimental (she doted over her family and her cats). Still others called her independent and opinionated (her most commonly used phrases were “Not me, kid,” and “That’s stupid,” said with a noticeable Greek accent). Everyone agreed on two things, however: she was loyal to her friends and she loved to play cards. (She could play card games for hours, always for money; “If you don’t play for money, what’s the point?” she often said.)
But her life – and our family’s – was changed forever in the early 1990s, when Effie was diagnosed with Alzheimer’s (a disease that probably also affected Effie’s mother, although we never got a diagnosis). Typically, my father felt he had to protect my mom, and he instructed us all not to reveal the truth to her. He had yet to learn the power of the disease, which gave its victim one blessing among a witch’s brew of curses: she got upset at the moment some disturbing news was passed on to her, but it never lasted. Like some bizarre interpretation of Edith Piaf’s trademark phrase, “Non je ne regrette rien,” regrets and recriminations and any unhappy feelings about the past went into the Memory Hole.
But it is a high price to pay for peace of mind. At first, the sickness could be seen in moments we all have as we grow older – the forgetfulness that one colleague of mine calls “half-heimers,” in which we can’t remember a person’s name. Or else, we have trouble recalling a word, or how to do something we’ve done a million times in the past. And then it becomes the frequent use of the phrase “I don’t recall,” or “Isn’t that funny? I don’t remember.”
No, it wasn’t funny but we had to find humor wherever we could, or her deteriorating condition would have driven us mad. Indeed, I think my father would sometimes be brought to the edge of insanity by her frustrating behavior – the constant repeating of questions, the rearranging of papers, the hundreds of other irritating ticks, all of which would cause him to explode in rage at her (once he even accidentally shoved her to the ground). He always felt terrible afterwards but he needed to vent. After all, his lifelong companion was disappearing before his eyes – and with that, his dreams of quiet retirement in a village in Greece where we owned some land.
Now, almost all his time was spent watching over her. And she needed a great deal of watching. One night at midnight, not long after my parents had moved from their residence of 33 years, 404 Riverside Drive, to a building six blocks further uptown, my father received a call from the police.
“Does a woman named Effie Soter live there?”
“Yes, she does,” replied my father, woken from a sound sleep.
“We’d like to bring her to you.”
My father, suddenly alert, looked around the bedroom. Effie was gone.
“Where are you calling from?”
“We’re at 404 Riverside Drive.”
They brought her home, wrapped in a blanket that gave her more warmth than the flimsy nightgown she was wearing. Apparently, Effie had woken up and wandered out the front door and to the drive, where barefoot, she had somehow, remarkably, found her way to 404. One of the staff recognized her and called the cops.
After that, my father had a key-lock installed on the inside front door, and people were told to be sure the door was locked after they came in. Sometimes someone would forget – and the doorman (the building was unstaffed at night) would call us to report her. Once we received a call from our downstairs neighbor; they usually kept their front door unlocked, and were surprised to come home and find an uninvited Effie sitting in their living room.
Soon, her wanderings were confined to my parents’ apartment. That led to some strange encounters. I remember sleeping over at my parents’ one night when my father took a break for a week to vacation with my older brother, Nick, in Florida. The illness was at its height. I was lying in bed in the spare room with my girlfriend, Christine, and we woke up suddenly to find my mother, in her nightgown, leaning over us and peering into the bed. She didn’t speak, except to say, “Who’s there?” and I patiently had to get up and lead her to her bed. Nick, who, with his wife, Dora, had had similar experiences, called her “The Ghost,” for indeed, that was what she had become.
But she didn’t give up her memories and her personality without a fight. From about 1991 until 2011, when she died, she was in a constant battle to keep her personality. Above all else, she was clever. In a story I’ve told before, early on in the disease’s progress, a doctor gave her a memory test.
“What year were you born, Mrs. Soter?”
“What year is this?”
“So how old does that make you?”
“You figure it out.”
She was tricky. She’d find a wallet stuffed with money, and for safety’s sake, she’d hide it somewhere – and then forget where she had put it. I’d often come over to find half-a-dozen people searching my parents’ home trying to find a missing wallet, or car key, or passport, or some other hard-to-replace item.
At restaurants, she would often slip dinner bills (and the tray they came on) into her pocket, forcing my father to go back to the restaurant and return the tray and the bill, which he had already paid.
Another time, he went with her on a short flight to Washington D.C. When they returned home and were getting undressed, she asked him, “What’s this?” She had somehow managed to smuggle off the plane an inflatable life vest, which she had put on under her clothes.
She must have known at some level that she was having trouble remembering, but when my father gave her medicine for that, she questioned him impatiently, unwilling or unable to confront the illness head-on.
“What are these for?” she would say about the pills he asked her to ingest.
“They’re for your memory,” he would reply.
“There’s nothing wrong with my memory,” she would say, and then a minute or two later, she’d ask, “What are these pills for?”
Repetition was the most maddening symptom of the disease. You’d talk with her and she’d seem almost normal, but then you’d get in a loop.
“Where are we going?”
“To the movies.”
”We’re going to see a James Bond movie.”
“It’ll be fun.”
“What will be fun?”
“The James Bond movie.”
“The movie we’re going to see.”
“What are we going to see?”
“We’re going to see a James Bond movie.”
“It’ll be fun.”
“What will be fun?”
And so it would go, like a twisted, unfunny version of the “Who’s on First?” routine. In fact, one reason we would take her to the movies was because that was the time the questions stopped, as my mother sat in awed silence at the massive activities occurring on the screen.
The most lasting image I have of her during the illness was of her playing cards. Long after much of her personality had been wiped away by the Alzheimer’s, she could still play cards – a family pastime at least since my grandmother’s day, when my grandmother would call the teenage Effie away from her studies, saying: “You can study any time! Come play cards now!”
It was a lesson deeply implanted in the young girl, so that six decades or so later, she might not be able to identify with whom she was playing and she didn’t know what year or even what day it was, but she could still play cards. The doctors were amazed – and also surprised that, when she began deteriorating even further, she was sly enough to cheat, something she never had to do when she was well.
My dad sometimes compared the endless card games to the sequence in Evelyn Waugh’s A Handful of Dust, in which a character finds himself trapped on a desert island, the prisoner of a lunatic, who forces him to read out loud the complete works of Charles Dick-ens over and over again. Despite that, my father often said that he played the card games willingly.
“You see,” he ex-plained to me once, “most times, she sits around doing nothing; or she sleeps, or she keeps asking questions. It’s only when she plays cards that her old personality comes back, when she’s aggressive, assertive, making jokes, and interacting with people. It’s at those times, I see the person I knew.” He paused, with a catch in his throat. “I see Effie.”
August 8, 2014
This story was written for the book DISAPPEARING ACT, which is available now from Amazon.