18 February. Noel and I were going through a box of mementos today and he showed me a card he made me years ago for Mother’s Day. It used the letters of MOTHER to make a poem or rhyme. I can’t find it now and I can’t remember what it said, but it was lovely. I’ve spent the past few hours, with pencil and eraser, writing an updated version. Here it is:
M is for the miseries of Menopause,
O is for the road to Oblivion,
T is for the Tailspin of ageing,
H is for the feeling of Helplessness,
E is for the feeling of Emptiness,
R is for my Rage over losing my Role of M O T H E R.
20 February. ‘The future is not something I’m dying to get to,’ I remember Noel saying when he was six or seven (and I laughed, seeing the dark humour). Now, I feel the opposite: the future is not something I’m in any hurry to get to. The future is not what it used to be.
The buy-out I signed allowed me to teach part time, which I’ve wanted for years, but I now know I’ll never be able to do that. I feel like I’ve spent my life climbing the rungs of a slide.
22 February. Alzheimerland is a foreign country. Time doesn’t move the same way here, calendars are fuzzy, the days and months shuffled like cards in a deck. And space is different too -- the land seems to wobble, the signposts shift. You stumble through mud or sand, through mines and traps. And it’s hard to talk to people here, to speak their language. It’s so hard to get used to -- it’s not like where I grew up.
Did you ever walk into a room and forget why you went in? Entering the FORGETTERY, I used to call it. Or was it my husband who called it that? Anyway, we used to laugh but now I don’t find it so funny -- because that’s how we Alzheimerians spend our waking hours.
26 February. Is Alois Alzheimer spinning in his grave, I wonder, remembered only for a disease of forgetting? Do many Germans have this last name? Or has it died out, like Hitler’s?
2 March. Someone came over today. I don’t know who it was, although the face looked so familiar. I tried to pretend, but I don’t think I fooled anybody.
It leaves me angry and frustrated. And I’m afraid I take out my frustration and anger on poor Noel. What would I do without him? I’d be in a padded cell, that’s where I’d be.
My plan was to go back to teaching, part time,
I can see myself ending up in a nursing home, and the idea kills me (Freudian slip, I meant to say ‘fills me’) with pain and sadness. I don’t want to go. I pray my brain will hold out a little longer, until I’m dead ...
9 March. Everything inside so hollow, so grey and dry. My brain leaking memory and hope. So grey! I’m underwater, it feels like, in dark and blurry waters. Perhaps like those my husband saw, before he died.
13 March. Three days have gone by. I know this only because I saw the date on the newspaper (the only line I read these days). Three more days, cancelled days, gone without a trace. A trio of blank squares cut out of the calendar.
15 March. I’m watching too much television. That’s all I seem to do these days. I like shows like Who Wants to be a Millionaire Jeopardy, even though Noel can’t stand it. He thinks the questions are too easy. I used to agree with him, but now I’m starting to find that I can’t even answer the early questions. The answers just don’t come! There’s another quiz show I like but I can’t remember its name.
18 March. I came to sit here because I wanted to write something important but I can’t remember what it was. I’ve been sitting here for an hour or two with a mind that feels like cake batter, looking down at the white letters on the keys, or up at ringed calendar days and not knowing why they’re ringed ...
Just remembered -- after watching some stupid quiz show on TV. It’s about this newspaper article I cut out. (I’m trying to read as much as I can, because Noel said it’s good for the brain, but I find TV easier and it’s probably too late now anyway.) In any case, I have it beside me now. It’s from The Gazette.
Mercy killer commits suicide
A man who pleaded guilty to suffocating his mother in what he claimed was a mercy killing has killed himself while out on day parole.
Noel Burun, 32, pleaded guilty to manslaughter in the death of his mother, Stella Burun, who suffered from Alzheimer’s disease. He admitted placing a plastic bag over her head while the two were staying at the Château Frontenac in Quebec City on September 6, 2000.
Burun, sentenced to five years, was known to have attempted suicide twice after killing his mother.
On March 16, the National Parole Board granted Burun day parole, to be spent in a halfway house. He was also serving part of his sentence at the Philippe Pinel Institute, a Quebec government psychiatric hospital. A report issued by the board indicated Burun had difficulty in dealing with his mother’s death, experiencing ‘severe depression and recurrent nightmares’.
I don’t know why I typed this out. And why did I substitute Noel’s name, and my own? What does that mean? Am I seeing the future? Should I phone ... what’s his name, the doctor? Émile? Should I tell Noel what I’ve done? Now I’m getting worried. I’m starting to panic. Am I losing my mind? I’d better go to bed.
23 March. I looked all day for my car keys. Then Noel said he’d prefer that I not drive any more. So I became furious and stormed outside in my housecoat to see if the keys were in the ... whatever it’s called. So I went outside and the doors were all locked and then I couldn’t remember what I was looking for. And then I saw my licence plate and laughed. ‘Je me souviens,’ it says.13
The ignition. (Thank you, Noel.)
May? This is so hard to write. The typing part is OK, I still have most of my dexterity and finger-memory, but I have to keep looking in the dictionary for certain words and for the spelling and then I forget which word I’m looking for!
Alzheimer’s is like when they switched to metric. When everything you’d known for years suddenly got mixed up. The numbers weren’t the same, they didn’t mean the same thing. You didn’t really know how much things cost, or what the temperature was, or how far it was to the next town.
Or it’s like when we came to America, when we switched from driving on the left side. Oh, you get used to it, eventually, but I’m in that place before you get used to it.
June? I’ve made a decision. If I can’t make sense while talking, I just won’t talk.
July? I think I lost my car keys Awful really the way I’ve let this place slide. But the hedges are clipped. Maybe I do better when I’m not quite all there. I wake up from a nap, look out my window ... and the hedges are clipped. Somebody must have done it. It had to be me, I guess. Who else?
I must get my eyes checked. Or change this ribbon. Things are starting to fade.
I must get my eyes checked. Or change this ribbon. Things are starting to fade
Thurs. (or Sunday ?) Haven’t the foggiest notion where I am or why. I woke up this morning and I was here in this place. They tell me it’s my home, but I find that hard to believe. I know I wasn’t here yesterday. A young lad came to the door. Or a lass, it’s hard to tell these days. Maybe not young. With a brush. They’re always coming and going. I don’t like all the hurly-burly, it’s so ... I don’t know the word. And she doesn’t know how to make tea. I told her so. I will not tolerate bags, nasty things. And she doesn’t hot the pot! I think I’ll go out for tea. I can’t find the keys to my car. Why are these drawers open? Who opened them? A robber? Are my keys in here? I have lots of socks in here. Must put some in the suitcase. What time does the train leave again? I would like to take this photograph too. He looks familiar. I don’t remember putting this poppy in here. Why would someone have done that? This is not my toothbrush anyway. I think it belongs to those people who were here. I’ll take it downstairs and give it to them. That woman who came to the door. I thanked her for coming and told her I was not well but she doesn’t leave. She doesn’t have any right to be here after I’ve asked her politely to leave. This is still my home. She says I have to talk to my son. Fine,
give me the phone and I’ll call him now. When the bank answers I’ll ask them how much money I have in my account. I will need money for the trip. But first I will eat this food on a tray. Is it for me? No. I’ll just go down and make some of those ... well, those round things. Why is my sleeve all wet? I wonder what time the train leaves. My head is all upset. It’s all padded and woolly. Noises make me that way. Or give me pains and the colour grey. I used to be smooth and white inside, but now I’m all grey. My son (sometimes I’m not even sure he is my son) keeps telling me I’m getting better but I wonder. He keeps telling me he’s getting closer. Closer to what? I can’t remember anyone’s name. Or face. I know my son. But who is everyone else? Why is she here, with the soap? What’s that screechy noise? Did I light something? What’s the number to call?
XXXX. I asked Noel the days of the week and he was a complete idiot. Not those days! The other days! Yes, what your father called them. Well, whoever! Type them for me.
But now where did I put that blasted paper? Everything seems to
Ok here
Moanday. I.. dshhe
Tearsday. Did not
Wailsday. Cant seem to
Thumpsday
Frightday
Shatterday. Will never unerstan
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Chapter 7
Noel’s Diary (I)
A lily lasts a week or two,
A month or two for roses A rose gets smashed in bad weather.
But like a mother’s love,
The amaranth lasts forever.
— Noel Burun, age 8
December 8, 2000. After a day at the library, went over to Mom’s for a late dinner, a “European” dinner as she calls it. I set the table, lit two candles, poured a Riesling with a Gothic castle on its label while Mom brought out two plates of swordfish amandine, mashed potatoes and glazed carrots. This looks exquisite, I said. But after my first bite I realised the swordfish was cold, not far from frozen. I’ll just warm everything up in the micro, Mom said. Won’t be a tick. While glancing at a New York Times she had placed beside me (one more act of thoughtfulness in a constellation of such acts), I waited. And waited. I could hear clicking sounds in the kitchen. Everything OK, Mom? I shouted. Well, not really, she answered. I entered the kitchen. Mom, flustered, was fiddling with the dials on the dishwasher. I can never remember how these blasted things work, she said. I walked over to see what the problem was. I pulled down the dishwasher door and saw a strange sight: on the top tray were two plates of swordfish amandine, mashed potatoes and glazed carrots. Dripping wet. I opened my mouth in surprise, but quickly closed it. I stood there, frozen, not knowing what to do or say. What would be appropriate here? I took a deep breath. “These machines are a pain in the ass, aren’t they, Mom. I can never get the bloody things to work either. Why don’t you … sit back down, relax, read the paper, let me look after it?” Mom smiled lifelessly before walking back to the dining room. After draining the dishes, and then nuking them, I returned with two steaming-hot plates. I made jokes to distract her, childhood puns that had always cracked her up before, but not this time. This time she stared at me in silence, knife and fork squeezed in her hands. After toying with her food, and taking a sip or two of wine, she said she wasn’t hungry.
December 27. Mom and I were finishing off a turkey and the dregs of decade-old Drambuie when she started talking about a buyout on her teacher’s contract, an early retirement package, and why she was determined to take it. I hardly needed an explanation—after 25 years she’d been gutted by teacher’s burnout, and by mother’s burnout after 30 years of worrying about me. I asked her if she was still going to do her volunteer work and she said yes, she felt an affinity with the elderly, even more so now because she was one of them. You’re still young, I said, with the beauty and brains of a woman twenty years younger. She waved the compliment away with her hand. And how about your night classes? I went on. Are you going to continue with them? Is there room on your walls for more diplomas? This time there was no waving hand, no acknowledgement of any kind. Which diplomas? she finally asked. What do you mean, which diplomas? Your Art History diplomas! More silence as my mother gently rubbed, between her thumb and forefinger, the embossed handle of a knife. In your office, I said. I haven’t the foggiest idea what you’re talking about, she said. Come on, Mom, quit fooling around. Do you want me to show you one? Do you want me to get one? Mom shook her head, fear beginning to seep into her eyes. She laid down her knife. No, that’s all right, she said.
February 2, 2001. The first doctor told her she was fine. But the memory lapses and confusion continued, so I took her to see an expert, Dr. Vorta. He did some urine samples, blood samples, X-rays, CAT scans. A student-technician put her head inside a PET scan machine that traced radioactive sugar as it moved through her brain, showing how vigorously the various parts were used. I watched the monitors while Dr. Vorta pointed out what the colours of the images signified: pirate-blue for the skull casing, blood-red for the cerebral lobes, plum-purple for the tracer. Next he put her in a modified PET scanner of his own invention, which lights up the mess that Alzheimer makes with radioactive dyes: the errant gummy proteins (beta amyloid) that gum up the works. His technician then did a series of word-recall tests, asking her to repeat strings of three or four unrelated words—blue, Chevrolet, turnip, Syrian. Then she was asked to multiply 6 by 12, name the first Canadian prime minister, the current prime minister … She was doing really well and I was beginning to think she didn’t have any problems. At the end of the test, however, which took about ten minutes, she was asked to recall some of the unrelated words. She couldn’t remember any of them. Not even after getting clues (e.g. that one was a vegetable, another a car, etc.). Not one single one.
February 11, 2001. Today we got the news. A discernible shrinking of the hippocampus, where short-term memories are stored. And evidence of amyloid plaque. Based on that and the word tests, Mom has “mild cognitive impairment,” or “premature senile dementia.” Early-onset AD, in other words. What’s the prognosis? I asked Dr. Vorta, well out of Mom’s earshot. She has a chronic invalidating condition, he replied after a pause. Unless a cure is discovered soon, Noel, your mother will be dead in five years.
February 21. There’s nothing more I can do. I can’t be expected to look after her. I’ve got my own life, my own apartment, it’s near the library, it’s cheap and took ages to find. I can’t just get up and leave. I have a lease. And besides, I’m not qualified to look after her. She’ll be better off with people who know what they’re doing. I’ll stay with her this week. And then I’m afraid I’ll have to put her name on a waiting list somewhere.
March 1. Sublet my apartment. Moved in this afternoon with Mom. She’s happier, and so am I.
March 4. Tonight we went to the Dragon Rouge in Chinatown, which Mom really enjoyed, smiling at the waiter and saying “please” and “thank you” in Cantonese, and laughing as she twirled her chopsticks like a baton (we’d had a litre of rice wine). But when I laid down my credit card at the end of the meal she got angry, accusing me of spending all her money. She then made a solemn vow: she was getting her own place because “It’s just not working out.”
March 6. Nothing good to report. Mom has spent much of the past week confused, bursting into tears, forgetting the way to friends’ houses, forgetting whether we drove on the left or right side “in this country,” obsessively mourning her husband and deceased childhood pets.
What dark road are we travelling down? She’s only 56, for God sake. Will she end up like Claude Jutras?14
March 7
. Went to a matinée film today and when I got home Mom was furious with me for leaving her alone “for days.” I met this strangely magnetic man there, someone I’d seen twice before, on the 9th floor of the Psych Building. His name’s Norval (I don’t know his last name) and he reminds me of … myself. A much improved version. Unless it was my imagination—and it probably was, given my anti-talent for making friends— we seemed to hit it off. I’ll probably never see him again.
March 11. All day long Mom’s been playing songs from the sixties—over and over like a child. (She was 14 when the sixties began.) Over the past few years, for each of her birthdays, I’ve given her CDs to replace her scratched vinyl. I have also given her headphones, to no avail. I am now listening to a song I have heard approximately nine hundred times. Based on the number of repetitions, here is Mom’s Top Ten 60s Hit Parade (not including the Beatles, which is another list):
1. Love Is All Around—The Troggs
2. A World Without Love—Peter & Gordon
3. I Only Want to Be with You—Dusty Springfield
4. Don’t Throw Your Love Away—The Searchers
5. Silhouettes—Herman’s Hermits
6. Catch the Wind—Donovan
7. Paint It Black—Rolling Stones
8. Bad To Me—Billy J. Kramer & the Dakotas
9. Wishin’ and Hopin’—Dusty Springfield
10. As Tears Go By—Marianne Faithful
March 13. Even though Mom pleaded with me, hysterically, not to go, I went for another Tuesday matinée today. She eventually calmed down and gave her permission. Norval was there, smoking outside, when I arrived. I was really happy to see him, and he seemed happy to see me. We sat together, at his insistence, and I didn’t feel awkward at all, even though he’s miles above me in so many ways. He’s an incredible character—I still can’t believe what he did after the movie was over. As we were walking down Avenue du Parc and discussing the opening scene of Spellbound, he did something … how would I describe it? As unexpected as you can get. A few yards ahead of us, on the sidewalk, this woman’s dog … answers the call of nature. Right in the middle of the sidewalk. And the woman doesn’t pick up. She and dog just calmly move on. When we arrive at the scene a few seconds later, Norval stops, takes out a white handkerchief, stoops … and carefully wraps up a rather large turd. I thought he was going to run after the woman but no. He just continues on, calmly, not saying a word. I’m dumbstruck. So we’re now approaching the Banque Nationale where there’s this surly adolescent beggar, a permanent fixture who opens the door for people using the cash machine. As we pass by, he sticks out his cap and says to Norval in French, “Hey, I recognise you, I held the door for you a couple hours ago. Come on you cheap fucking dildo, I’m hungry!”