June 12. Been trying to stay out of the sphere of Mom’s anger the last few days, without much success. Dead tired all day, worse than usual, could barely move. Seem to have forgotten how to sleep. On a video I got from the Canadian Alzheimer’s Association, a woman said that when she was taking care of her husband she didn’t sleep for three years.
June 15. Mom wandered again tonight, turning on lights in room after room. Wearing a poppy on her nightgown. In June.
June 21. Summer solstice, longest day of the year. Found almost $3000 in Mom’s drawer, in twenty-dollar bills. When I redeposited it at the bank, the teller told me that last year Mom had been going to the bank every day to make withdrawals. When I asked the teller why she didn’t report it, she said she did, to the manager, who reported it to her brother-in-law in New York. Also found an envelope containing forty-eight Super 7 lottery tickets, which I just finished checking out on the Internet. Won 10 dollars and 2 free tickets.
July 2. The burglar alarm woke me up last night, at midnight. I jumped out of bed and scrambled downstairs in my boxers. Before I could shut the alarm off, there was loud knocking at the front door. I didn’t know what to do, with the alarm still going, so I turned the outside light on, looked out the window and saw … Mom, elegantly dressed in a pin-stripe business suit. I let her in and then shut the alarm off. By then the Étoile Security people were calling to see if everything was OK. I was shaking when I told the guy what had happened— and almost couldn’t remember our password! After I hung up Mom explained that she was on her way to school and had come back because she’d forgotten her notes.
July 15. Mom is now registered with the Alzheimer’s Wanderers Program, and wears an ID chain.
August 20. Been busy renovating. I changed the dead bolts on the front door and the kitchen door to double key locks. I also papered over the doors. And made lots of other changes around the house. Dr. Vorta gave me some ideas, the Bath Lady gave me others. But I’m too tired to write about it.
August 22. Dr. Vorta gave me a list of ways of keeping Mom active, mentally and physically, and more changes that should be made in the house itself. As for treatment, he says there are essentially 4 drugs to treat Alzheimer’s. And they’re not terribly effective—at best, they mitigate symptoms. I’ve already tried two: Exelon (rivastigmine) and Reminyl (galantamine, first derived from the bulbs of snowdrops and narcissi). Both modulate the neurotransmitter acetylcholine. But neither stops the progression of the disease, and there are side-effects: nausea and vomiting, stomach cramps and headaches, diarrhoea, dizziness, fatigue, insomnia, loss of appetite …
September 21. Autumn equinox. Been trying two new anti-aging neuro drugs over the past few days (neither available in Canada—thank you, Dr. Vorta!). One is Centrophenoxine (Lucidril), a carboxyl-linked dimer (two molecules linked to a C=O group by a –O- connection) of p-chloro-phenoxyacetic acid and DMAE (DiMethylAminoEthanol). The other is Hydergine (Ergoloid Mesylates), a mixture of alkaloids that come from a fungus (ergot) that grows on rye. One of them seems to be working, in any case, because first at dinner and then at bedtime, Mom was astonishingly clear.
“What poem shall I read tonight?” Noel asked his mother. She had been particularly lucid that night, especially at the dinner table, going on at length about one of her favourite books, The Golden Bough. She was now in bed, ready for her bedtime story.
“I don’t want a poem tonight,” she said. “I want to hear about the Struldbrugs. Because I think I’m turning into one.”
“The Struldbrugs?” Noel repeated, in amazement. Even his own brain took some time to retrieve this name. “From Gulliver’s Travels?”
“Where else?”
His mother used to read this novel to him, at Noel’s insistence, almost every night for six months, from May 14 to November 11, 1977. As much as the book, he loved the colours of his mother’s voice and the ambrosial scent of her skin: lily-of-the-valley with a whisper of lime.
“You’re not turning into a Struldbrug, Mom. They’re immortal.”
“They’re old and demented, you mean. Can you tell me the story, Noel dear?”
“I’m not sure I can remember it all. I may have to get the book, although I haven’t seen it in a while. It may be in the attic.”
“It’s from the Voyage to Luggnagg.”
“Is it?”
“Are you losing your memory, Noel?”
“No, I just … I’ll give it a shot. It’s murky, though. And there might be a few bits missing:
The Struldbrugs commonly acted like mortals, till about thirty years old, after which by degrees they grew melancholy and dejected. When they came to fourscore years, they had not only all the follies and infirmities of other old men, but many more which arose from the dreadful prospect of never dying. They were not only opinionative, peevish, covetous, morose, vain, talkative, but uncapable of friendship, and dead to all natural affection. Envy and impotent desires are their prevailing passions …
They have no remembrance of anything but what they learned and observed in their youth and middle age, and even that is very imperfect. And for the truth or particulars of any fact, it is safer to depend on common traditions than upon their best recollections. The least miserable among them appear to be those who turn to dotage, and entirely lose their memories; these meet with more pity and assistance, because they want many bad qualities which abound in others.
As soon as they have completed the term of eighty years, they are looked on as dead in law; their heirs immediately succeed to their estates, only a small pittance is reserved for their support … “
Noel opened his eyes as the words became garbled, like portions of a video erased or recorded over. “Here it gets blurred, Mom. Then it goes:
At ninety they lose their teeth and hair, they have at that age no distinction of taste, but eat and drink whatever they can get, without relish or appetite … In talking they forget the common appellation of things, and the names of persons, even of those who are their nearest friends and relations. For the same reason they never can amuse themselves with reading, because their memory will not serve to carry them from the beginning of a sentence to the end; and by this defect they are deprived of the only entertainment whereof they might otherwise be capable.
The language of this country being always upon the flux, the Struldbrugs of one age do not understand those of another, neither are they able after two hundred years to hold any conversation with their neighbours the mortals; and thus they lie under the disadvantage of living like foreigners in their own country …”
Noel stopped when he realised he’d lost his audience. He bent towards his sleeping mother’s face—so pale, so lifeless—as if to hear some last word. Swift’s days ended in memory-crippled dementia he recalled as he drew closer, felt her breath mingle with his.
October 4. Tonight we watched a documentary on actor Christopher Reeve and his battle to recover from his spine injury. Mom said she hoped with all her heart that he was still around when they found a cure. “Do you think they’ll find a cure?” she asked, wiping a tear from her cheek. “I’ll never know what happened to him, because I’ll be dead before him. Or have lost my mind.” “Mom,” I replied, with my arm round her shoulder, “you’ll both be cured—I know it, I have a gut feeling. I bet you’ll both be cured in the same year! That’s my prediction. You can beat this, don’t give up. Use Superman as inspiration.” (Superman! The TV actor became an alcoholic and put a bullet in his head; the movie actor became a quadriplegic after falling off a horse.)
October 15. I’ve asked the Bath Lady to come in four days instead of two and she agreed. This will give me more time for myself, but just about exhaust what’s left of our savings. I’ll deal with it later.
October 31. Hallowe’en. In the afternoon, Mom and I cleaned. As I vacuumed she dusted furiously, really getting into it. She then got out the broom and began riding it like a witch, which made us both laugh. Five minutes later she was slouched in a chair in an unlit
room, morosely watching TV, switching from one game show to another.
November 2. We’re running out of money. Prescription drugs are supposed to be free after out-of-pocket expenses of $68.50 a month. But for some reason (either a computer error or Mom forgot to pay the annual premium) they’ve cut us off from the plan. Aricept alone costs $158.50 a month. Now wondering if I should ask Dr. Vorta for a loan. Or Norval?
November 3. Had to let the Bath Lady go, which wasn’t pleasant.
November 11. Today Mom was shivering all day; I had to crank up the heat even higher. It felt like Calcutta. Anxious to know why Mom is sleeping 18 hours a day. Death practice? Which drug is responsible?
November 17. Five minutes ago, instead of me reading Mom a nighttime poem, she had one for me (shockingly):
There was a young lady from France
Who hopped on a freight train by chance
The fireman fucked her
As did the conductor
While the brakeman shat in his pants.
For a second or two I thought a new neurological disorder was rearing its head: Tourette’s or something. She added, whispering behind her hand, that she’d heard it from her childhood friend “Rita.”
November 22. The dryer broke this afternoon, so I began hanging Mom’s things up on a makeshift clothes line in the basement. She appeared behind me and nearly gave me a coronary. She was very upset. She said I had stolen all her underclothes and was now washing them so as to give them to my girlfriend. I continued to hang up her clothes, including a white bra. “Who are you referring to, Mom? Which girlfriend would that be?” “Don’t you dare ask me the W questions!” she screamed. “Don’t ever ask me who, which, when or … where. You’re only trying to confuse me! You’ve been trying to confuse me for fifty goddamn years!”
Five minutes ago, when I went to say goodnight, Mom was posing before her full-length mirror, semi-dressed with her brush in her hand, standing like a statue. I asked her what she was doing. She said she was waiting for me to brush her hair.
December 18. This morning Mom received a postcard from Bermuda from Aunt Helen and Uncle Phil, with a postscript for me that said, “Keep up the good work, Noel. Really wish we could be there to give you a hand. Merry Christmas.”
December 21. Winter solstice. I always think of my grandmother as the seasons turn over, since she was the one who taught me about such things. Not only about the tilt of the earth, but how the seasons correspond to the four ages of man: spring lasts until 19, summer from 20 to 39, fall from 40 to 59, winter ever after. She also told me that each new season must be ushered in with a good stiff drink. Or drug.
December 24–25. Mom slept through Christmas eve and almost all of Christmas day. She was feeling “down” and didn’t feel like celebrating or opening gifts. To get her in the mood I put on The Twelve Days of Christmas, but she told me to turn it off after three French hens.
Placed half-consumed cookies and milk by the fireplace, hoping Mom would laugh (she didn’t seem to notice), and then tried to make shortbread. Followed her recipe to the letter, but the dough was friable and wouldn’t cohere, and it just expanded and melted, spilling over into the oven. When Mom saw me cleaning up it was the closest she got to a smile all day.
December 26. Was listening to A Child’s Christmas in Wales on headphones when a sound that didn’t belong made me jump. The fire alarm. At
4:10 a.m. I leapt down the stairs, where clouds of brown smoke were filling up the kitchen. On the stove, eggs had boiled black in the pan. And Mom asleep in her chair.
Don’t know how much longer I can carry on. I think I’ve reached the end, I’m incurably tired but can’t sleep, I’m starting to drink my Mom’s sherry by the bottle, Dr. Vorta’s drugs aren’t working, we’ve almost run out of money, Mom’s going to burn the house down …
I thought I could make her happy by coming home, but clearly haven’t. Maybe a nursing home would be better. I phoned Uncle Phil, who returned from Bermuda today, left a message. And a long e-mail.
December 27. Uncle Phil and Aunt Helen both e-mailed back, apologising for not being able to come up for a visit. They could put Mom on a waiting list at a home in Long Island if I liked. “A very good one,” said Aunt Helen. “Oyster Bay Manor, it’s called. Let me know.”
As I was changing the battery on the fire alarm, Uncle Phil phoned, saying that he had found a bed at the Babylon Beach House on Yacht Club Road. But it had to be filled this week. The cost: $780 a week. I said I would think about it, then called him back and said no. (We don’t have the money and I don’t want to do it anyway.) I explained to him that things were getting a lot better lately.
December 28. Phoned the Beaumont Health & Rehabilitative Centre in Outremont—$98 per day—therapy and medicines extra.
December 29. Did something rash this morning. After finding the top burners on the stove glowing red and a raw roast of lamb in the oven, I called Beaumont and told them we’re ready next time they have an opening. I’m running low on gas and patience. Can’t do anything more for her. With regard to her memory, I’m beginning to grasp the meaning of the word “irretrievable.” Time to let go. Besides, it could be six months or more before they have an opening.
At 5 on the nail they called back: they have an opening on January 2. In three days.
December 30. Mom’s been agitated all day. She knows something’s brewing, something cataclysmic. Ten minutes ago, at midnight, I opened her bedroom door to see if she had managed to calm down. A shaft of light crossed her sleeping form. I was about to close the door when I noticed something else, something scrawled on the tilted mirror of her dressing table. I tiptoed closer. There were two words, written in dark-red lipstick, the colour of drying blood: HELP ME.
December 31. Cancelled at Beaumont. It’ll be all right, I’ll find a way. For the first time in my life I feel clear. And unafraid. I know what I’ve got to do. At dawn I went downstairs, through the locked door, to my father.
Chapter 8
Henry & Noel Burun
By his late twenties, in Edinburgh, Noel’s father was a blazingly talented chemist. By his late thirties he was head of a pharmacology department in New York, with two dozen researchers working under him. When his company, the Swiss-based conglomerate Adventa, relocated from Long Island to a Montreal suburb for tax reasons, he was asked whether he would accept a transfer, at twice the pay. He would accept the transfer, he said, but at half the pay—as a drug rep. The company’s chief executive officer laughed, then recommended a psychiatrist, then threw up his hands. And thus Henry Burun ended up not combining chemicals for the betterment of the world, not devising new drugs to cure its maladies, but rather … selling them. A travelling pharmaceutical salesman. What does your father do? they’d ask Noel at school. My father sells drugs. And everyone would laugh.
At first Henry liked the new job, travelling from town to town in lower Quebec and upper New England, but eventually it ground him down trying to see doctors and pharmacists who had little time to see him. When he was granted his five minutes, he told the truth about the drugs—which ones were hyped, which ones had failed clinical trials, which ones had withdrawal problems or crippling side-effects. He was an abysmal salesman and he knew it. Which is why he drifted from company to company, let go in turn by Adventa, Pfizer, Merck Frosst and NovaPharm. So why didn’t he go back to the research lab, which would have rolled out the red carpet? Because he couldn’t take the stress, the responsibility for others, the pressure of producing the next Big Drug as patents for older ones were expiring and making shareholders nervous. The pressure to fudge clinical trials, to downplay side-effects. It was this pressure, along with sixty-hour work weeks, that gave him his longest nervous collapse ever, a dark six-month depression that nearly drove him to hanging himself from a beam in the basement. At least the salesman’s job allowed him to be alone most of the time, watching the world through a car window, numbing himself with the latest tranquillisers and anti depressants. With a wif
e and child he adored, he should have been in love with life. Instead, through some baffling process, some chemical disharmony, he became increasingly despondent, constantly seeking a reason to live.
“Did we kill Dad?” Noel asked his mother, after the crash was ruled vehicular suicide.
“No, Noel, we didn’t! Don’t ever think that!”
Suicides become vampires, the children told him at school. And suicidal parents, according to the Welsh nurse, will have children who are suicidal. “Did the world murder Dad?”
Mrs. Burun remained silent before rising from her chair and walking out of the room. “Did Dad leave because I was bad?” Noel wondered as he heard, from the kitchen, his mother’s sobs. Could there be a worse sound in the world? The living room walls suddenly appeared to be streaked; he realized he too was crying. His mother’s sobs, and father’s death, filled him with a bone-deep sadness he would feel, on and off, for the rest of his life. He would never ask these questions again, shutting them up with triple locks inside himself.
When Henry Burun returned from his sales trips, his son would be on the lookout, either from the front porch or, in winter, from behind the closed curtains of the living room, his nose pressed against the frost-covered pane. At the first sign of the silver-blue Chevy Impala or sunfire-red Pontiac Laurentian, he would explode out the door and down the walkway, once barefoot in snow, and his father would set down his bag and lift him high in the air, twirling him round, making him squeal with laughter.
Inside, he would follow his father’s trail of pipe fumes around the house, irresistibly, like a child of Hamelin. He was waiting for his father to give him his briefcase so he could do “the sorting.” Inside the worn Gladstone bag were pharmaceutical advertisements by the pound, blotters with pictures of internal organs and magical names of curatives, business cards from doctors and pharmacists, stacks of his own cards with the logo of his company (which, like the company car, would change almost every year); but the best thing by far were the samples, which usually came in blister-pack booklets. He would put them into piles: analgesics, heart medications, muscle relaxants, tranquillisers, antidepressants (usually empty, seals torn), vitamin pills, energy boosters … The complex medicinal smells never left him; they could be summoned years later by the drug name itself. Noel was not quite sure why this “sorting” had to be done, but he could do it happily for hours, memorising formulas, ingredients, dosages …