Stephen Gauer: What should we talk about now?

WHAT SHOULD WE TALK ABOUT NOW?

For the last six months, my father has spent all of his nights and most of his days in a pink room on the second floor of LeisureWorld, a nursing home near Lake Ontario in suburban Toronto. When I walk into this room at ten in the morning I find him curled up on his single bed, eyes closed, cane between his thin legs, glasses askew on his nose, sweater tucked inside his jeans, slippers still on, mouth open, brow slightly creased.

"Dad, it's me."

"Oh, yes, good of you to come."

"How are you doing, Dad?"

"Oh, fine, but I got hit in the head four or five people ago. A guy picked it up, and then hit me on the head. What a stupid thing to do!" He touches his forehead. I don't see a mark or cut or bruise.

"Yes, that is stupid," I say.

"And you know, this is the first day. They're deciding who moves ahead. For a lot of the fellows, you know, there's a pole in the way, but they can still get through."

"What do these fellows do?"

"Oh well, they have to get back, back to the words. The big words."

He pauses. His mouth moves, as though beginning to shape a word, and then stops. The room is very still. At the end of the room, backlit by the morning light, my father's roommate sits in his wheelchair, a dark and featureless silhouette.

"Well," says my father finally. "What should we talk about now?"

This is not a story about Alzheimer's Disease. The medical name for my father's condition is vascular dementia, which shares some symptoms with Alzheimer's but isn't the same thing. My father suffers from memory loss, disorientation and speech problems, but he can dress himself, eat at the table, find his way to the washroom and kiss my mother. He isn't incontinent, he doesn't become agitated in the late afternoon (the "sundowner" syndrome), he doesn't wander the halls at night, he doesn't yell or swear or become aggressive. He is, in fact, a model resident of LeisureWorld, loved by the staff for his gentle, undemanding personality. In this respect he is the same man I remember as my father; but in almost every other respect he has become an actor reading the wrong script, Waiting for Godot by way of Reader's Digest. The cruel irony is that dementia has given him a role with larger emotions and more memorable lines than his own life did. If he were not demented, I wouldn't be writing this story.

One day in September, 1994, my father got up from the dinner table, put the dog on a leash, walked to the front hall, reached for the door handle, and then stopped. He called my mother's name, once, and collapsed on the floor. Later, in a downtown hospital, it took the surgeon three hours to repair the hole in his aorta caused by a massive aneurysm. It's impossible to know for certain, but it's likely that the aneurysm caused brain damage, and set in motion a slow process of decline that started with memory loss. Within a year, my father was having trouble remembering where he'd left the car keys or the dog leash. Within two years, he was starting to struggle for words. "What are you looking for?" my mother would ask as he searched pockets and shuffled books and magazines and newspapers. "Oh you know, the thing …" he would answer. "No, I don't know," she would shout, and begin to cry.

Then one day my mother noticed that my father, who'd always been very careful with money, had allowed their low-interest bank account to reach $20,000 instead of transferring the money to a GIC or savings bond. Bills came back because he'd forgotten to the sign the cheque, or fill in the amount of the cheque, or even enclose the cheque. His driving became erratic and unpredictable. The worst moment was her discovery that he'd stopped putting in the eye drops prescribed by the doctor to control glaucoma. He went blind.

My mother was beginning to lose much more than a quiet money manager who drove the car and listened to her stories. My mother is deaf, because of pre-natal damage caused by medication her mother took during the 1919 flu epidemic, and has always relied on my father to deal with phone calls, complicated negotiations, any conversational situation involving nuances that her hearing aid can't pick up. As a team they have overcome her handicap, survived and prospered, raised two children, earned a comfortable retirement, but now one member of the team was beginning to falter.

My father's steady deterioration during the late 1990s was clear to my sister and I, and the two of us discussed it in every conversation, but we never talked to my mother about the need for a medical diagnosis or about the implications of his condition. She insisted that on his "bright days" he was quite fine and quite his old self. But on each visit back home I saw a man struggling to follow a conversation, to fit words into sentences, to remember what he had eaten for lunch. Five years after the aneurysm, when I took him to see a movie, he cried out "I'll get it" when a telephone rang in an early scene. The audience laughed. Afterwards, I asked him to describe the story, and he said, "First there were some sparkly bits, then some dark bits, and then some more dark bits."

During family dinners, my father would make only token contributions to the conversation. He would stab at his food, spill his wine, and stroke the table cloth in the kind of repetitive action that annoyed my mother to the point of yelling at him, "Stop that!" And in keeping with a life-long habit of keeping his emotions in check, he never despaired or cried out in frustration. When I asked him how he felt, he usually just said, "Oh, fine". When I pressed him on the memory loss and the blindness, he would say, "Well, yes, it is frustrating."

The burden of care fell to my mother. As his eyesight failed, he needed help going to the washroom and operating the elevator. She had to watch him all the time. She found a seniors daycare program nearby, and he starting going three days a week. He got a hot lunch, games with other seniors, and lectures on history and politics that he said he enjoyed but could never describe. He began to get up in the middle of the night, put his clothes on, and sit in the TV room with the light on, waiting for his drive to the seniors centre. One night she found him huddled, still in his pajamas, under the dining room table.

Caring for my father became an exhausting job. My mother did it because she loved him, and because she saw this commitment as her purpose in life. When they come out to the coast for a visit in 1999, dad was barely able to function. One afternoon he wandered into my office and urinated in the corner. He needed help going up and down the stairs, getting his clothes on, getting into the car, getting out of the car, getting to the cruise ship, getting back from the cruise ship. I don't know how my mother managed for seven days on a boat with a blind man who had no memory, but she did, announcing on their return that while the food had been "terrific", the weather had been wet and cold, and she would never do that trip again. She cried and said she couldn't take any more, and then she took my father home and looked after him for another two years.

In March 2001 he collapsed and went into the hospital. The diagnosis was a blocked bowel and the doctor said the odds were 20 to one against a recovery. My mother decided surgery was not an option, and we all supported her. The first time I saw him in the hospital, he was a confused, scared man grabbing at the sheets and talking incoherently. Later he calmed down, began to take liquid food, and talk in sentences that didn't always make sense, but at least expressed his feelings ("It's very hard down here.") And he beat the odds, left the hospital, and came back home for almost two months.

We interviewed home care workers to help mom look after dad. She hired a woman she said she liked, but then fired her after a few weeks because she spent most of her shift either reading to dad, which struck my mother as poor value given the hourly cost, or making pasta, which also struck her as inadequate.

My mother realized she could no longer care for dad, and with help from my brother-in-law, got him placed at LeisureWorld. It is neither the worst nor the best place for him. She could afford something a little more expensive, but as she points out, in her blunt and pragmatic way, "what's the point of nicer surroundings if he can't see a damn thing anyways?"

We joke about it, but it's normal to lose some memory as we age: the ability to remember the last movie we saw, the last book we read, or what we had for lunch yesterday. But because my father suffered brain damage, the memory losses are more severe and more permanent. Not only can he not remember what he had for lunch yesterday, he can't remember the words for soup, sandwich and cookie. His speech is filled with vague references to "units" and "stuff" and "sections" and "end ones" instead of the real names for things. His spatial references are limited to "over here" and "out there" instead of actual places and locations. His sentences are syntactically correct, but lack the kind of concrete detail that we take for granted when we make a statement, tell a story, describe a meal or praise a new movie.

If we can't share our stories, how can we reveal ourselves? And if we can't reveal ourselves, do we still possess a personality?

At Thanksgiving, I go to visit my father with my mother. She walks into the room and says "Hello Harold" very loudly and wakes him up. He's lying on the bed fully dressed, as usual, with his eyes closed. He opens his eyes and sits up. As she comes close to straighten his twisted glasses, he says, "Hello, it's my girl, I love you, give me a kiss." They kiss. According to my mother, he sometimes bursts into tears at this point and asks her to marry him. I saw him start to cry when he was in the hospital, back in March, although he's never openly emotional when he's alone with me. Sometimes I think a tiny transplantable fragment of my mother's high-strung, raw nerve, emotions-on-the-surface persona has drifted over to my father and taken root, but I know the more likely cause is nerve cell damage to the hippocampus, seat of memory, learning and emotion.

We get him up and standing, cane in hand, and start to walk him out the door and down the hall to the elevator. He's frail and tottery, down more than 40 pounds in body weight since the early 1990s. He's had a weak right hip since birth; joint replacement surgery in 1997 eased the pain but failed to fix the limp. He walks like a man with puppet legs, while my mother barks the occasional "Lift your feet, lift your feet" as though he's a disobedient small boy trying to annoy a parent.

We get him into the elevator, down to the lobby and finally out into the warm sunshine of the back garden. I move three chairs under a tree, placing one so I can sit in the shade. "Why didn't you bring your sunglasses?" my mother asks. She starts to talk, and whenever she pauses and says, "Right, Harold?", he answers "Yes" just as he's always done. I realize they've been having conversations like this for almost sixty years and that nothing has changed. I can't decide if this is good or bad. As my mother talks, my father sits on the edge of the chair and tilts a bit forward, head raised slightly, in order to hear better. "You look uncomfortable," she says at one point, "why don't you lean back in the chair?"

The walls in the lobby are papered with posters. The name LeisureWorld, which appears on many of them, conjures theme-park images of relaxation and affluence and enjoyment, happy people in primary colours playing golf under sunny skies. One poster announces "a whole new image of age" and advises residents to "never complete retire" and to "do things because you love doing them". This, of course, is malicious advice: like my father, the residents of LeisureWorld are old and damaged and can't do things because they love doing them. They can't do much at all. They sit in the lobby with collapsed toothless faces. They eat and sleep, watch TV, stare into space. They trade small talk, they smoke cigarettes, they wait to die.

The clothes closet beside my father's bed holds a single short rack, with everything in twos: two caps, two pair of jeans, two pair of slacks, two sweaters, two windbreakers, two pair of shoes. I count seven shirts, including a dark blue one I sent for Christmas two years ago. Everything is either blue or beige. The sad thing is not that he has so little left, or even that the colours are drab, the sad thing is that this tiny collection of clothes was pretty much my father's wardrobe ten years ago, before the aneurysm, before LeisureWorld, before he began to lose his mind. On the door of the closet is a note in my mother's vigorous handwriting: "He can wear the same shirt and sweater for four days. Thanks."

On the bedside table there is a radio, a small stuffed dog, and a round, plastic container for his dentures. I asked my father about the dog on the previous visit but he couldn't explain where it came from. Then I asked him to count the number of legs on the dog. He took it in a firm grip in his right hand, and using his left hand began to feel each leg and count it. He gave up at three. In the top drawer of the bedside table I see a box of Kleenex, a comb and a razor. The other two drawers are empty. Near the foot of the bed is another table, with a small bouquet of plastic blue flowers on it. A cheap plastic razor is jammed under one table leg. The room is still, as it was before, and then I hear my mother's voice again, and she's saying "Lift your feet."

My father was born in 1916, the second of five children. Jake and Millie Gauer were first-generation immigrants from Austria by way of the Ukraine. My father was a quiet man from my earliest memory so I imagine he must have been a quiet child, too, happy to occupy the middle, inconspicuous position in a large family. Jake was a bricklayer and Millie raised the kids and ran the house; they were part of a larger extended Gauer clan spread throughout Winnipeg, some richer, some poorer, some living in fine mansions with servants near the Red River, some, like Jake and Millie, living modestly in brick houses. On our rare trips back to Winnipeg I remember Jake as a small, soft-spoken man who sat in a lawn chair in the backyard, smiling and smoking a cigar, cracking jokes about why beer was better than water. "Don't drink water, it'll rust your insides," he'd say, winking at me. At night, I lay on a cot in the cool basement of Jake's house and strained to hear the voices of adults talking upstairs.

My parents met at church in Winnipeg and married in 1942. The pictures of their honeymoon in Calgary are tiny black and white snapshots. My mother, 23, poses with the easy assurance of a model who knows how much the camera loves her; my father, 26, is a smiling and confident young man wearing dress pants, shirt and tie, as though about to leave for the office. My mother in these photos looks like the same woman I know now, only younger; my father's formality and full head of hair and confident smile are at odds with the man I know now, the man in the nursing home, and so render him almost unrecognizable.

After the war, my parents moved east to Toronto, bought a house in the suburbs, started a family and lived lives of slowly increasing prosperity, the same way millions of other Canadians did. My father fit the standard-issue model of 1950s suburban dad; he worked a straight nine of five, and would walk through the front door like clockwork at 5:30 to announce "Hello dear, I'm home" to my mother and then pat the dog and read the paper and sit down to dinner with us at 6 pm. When he wasn't working, he pursued the standard hobbies of the era: gardening, golf with co-workers, building Heathkit radios in the basement, mastering the basics of carpentry, plumbing and house painting. He taught night school for a few years at a downtown technical college. He coached the softball team and taught us the meaning of practice, patience and good sportsmanship. But none of these pursuits were passions and none survived the changes that were to come. In a way, my father's truest hobby in those days was helping people. He took a first-aid course and then happily played emergency doctor to anyone on the street needing a swab of antiseptic, a bandage, some calming words. When a neighbour almost cut a thumb off with a power saw, he raced across the street and applied a pressure bandage and cleaned up the blood and then waited for the ambulance to arrive.

I remember my father as someone who did things. He didn't say much, and when he did speak his voice was always calm and measured, even tentative. He loved facts and information. I think he found small talk difficult and intimacy almost impossible. In every social situation I remember my father carefully remaining in the background so that my mother could hold centre stage. She is a theatrical extrovert, yin to my father's yang. The two of the them must have appeared to the world like a happy incarnation of the cliché that opposites attract.

In the 1980s, my parents retired, sold the house, and bought a condo and two vacation properties. They spent winters in Florida, summers by Lake Huron, and the rest of the time packing or unpacking in the condo. My father continued to work part-time whenever he could. We went to movies together and things seemed mostly normal: I did most of the talking and dad did most of the listening. But the less he worked, the less he had to say. I have only one clear and completely distinct memory of his words from that time. I was arguing with my mother about my failure to finish university back in the 1970s, and she suddenly announced, as though topping me in the argument, that she'd never really wanted children in the first place. "That's not true," my father said, almost shouting. I'd never seen him so angry.

Ten years ago I moved far away from them, and the distance felt good. I visited once or twice a year. My father was depressed but never talked about it. My mother became louder, needier, and more demanding. The visits were exhausting. I began to dread phone calls from my father, who as soon as I answered would turn on the speaker phone and begin to repeat my words to my mother, whose deafness made a phone conversation almost impossible, and then repeat her words back to me. It was three-way conversation between two people who could no longer hear each other.

My father found no new interests later in life. He was an amiable and friendly grandfather but never went out of his way to spend time with four grandsons. As death began to shrink my parents' social circle, he made little effort to find new friends. He showed no interest in his closest relatives, including a younger, widowed brother who still lived in the city. Even a large family reunion in Winnipeg didn't provoke much response from him. I remember sitting at the reunion and spying on my father at the next table. He was silent, just staring down at the tablecloth, and not so much lonely as alone, in a large room full of people. My mother turned to him and spoke crossly, "Why don't you go talk to your aunt, you may never seen her again" and he finally got up and approached his aunt. Was he depressed or just shy? How could you be 80 years old and grow up in a large family and spend fifty years in management and still be shy around your own relatives?

The one constant in my father's sometimes shadowy life, the one clear image I can always summon, was the daily ritual of reading the newspaper and watching the news on TV. My father followed the news with the single-minded devotion of an addict pursing his fix, building piles of neatly folded newspapers beside his armchair, accumulating the equivalent of years of nightly news viewing on the television. In the 1960s,when I was still in high school, the two of us would sit in the den every night after dinner watching Walter Cronkite's newscast. This went on year after year until I went away to university. But as much as he was obsessed with absorbing the news, my father rarely talked about it. We never argued about Vietnam, or Watergate, or whether Red China should be admitted to the UN, or whether the War Measures Act was justified. He took everything in, but he didn't give much out. He was like a scientist collecting facts, with no intention of using them.

Now there is no news at all in his life. He can't read the paper and he can't watch television. He doesn't ask about the news. The word itself may be meaningless to him now. He is ignorant of the events of September 11 and we have made no effort to enlighten him.

While my father was in the hospital in the spring, my mother and I stayed up late one night drinking wine. She told me that her true love had been a boyfriend from high school named Buzz. Buzz had joined the air force soon after war broke out; they were engaged to get married when he was called overseas. He disappeared on a bombing mission. "The war changed everything, you have no idea," she said to me. When my father proposed, my mother wasn't sure, but her grandmother said she knew the Gauer family and thought my father was a good man who would make a good husband and because my mother loved and trusted her grandmother she accepted his proposal; days before the wedding, Buzz showed up and tried to claim my mother, but she sent him away. Buzz showed up again twenty years later, in the mid-1960s, and invited her downtown for dinner at the Royal York Hotel. My mother asked my father for his permission. She went for dinner and Buzz tried to persuade her to leave her family and move out west with him. My mother began to cry as she was telling me this story.

How can I understand my father's past when he can no longer remember it? As he sits on the side of the bed in his pink room, it is enough for him to say, "I'll go see my mother." I ask where she is. "Oh you know, she's there, she's waiting." He looks ahead, through unseeing eyes, as though staring at an image projected on the wall in front of him. His voice is calm, almost expectant. I can say that he's happy because I like to be optimistic about these things. I know that he's well cared for. I know that my mother visits three times a week. I know that he gets out once a month for dinner at my sister's. I know that he is my father, was my father, will be my father. I know all of these things are true.