Moral Hazard (3 page)

We lived on the Upper East Side in an apartment with milky north light, where the noise of traffic was dim, muffled, and we were happy beyond expectation. When the nearness, the three-legged race, got too much for me, I took off for a week or two, to write a travel story, do a profile, whatever.

Bailey earned his living as a designer—books, magazines, CDs, posters—but he was also a collagist. He’d had shows of his collages over the years, but his work was not impersonal enough to make him a ranking artist, a contender. It was too engaging, too emotional. All of Bailey, his every idiosyncrasy, was in his collages.

We had ten good years. Marvelous years. Then, he began forgetting. This was not immediately obvious to anyone but me because Bailey was expert in covering his lapses. He skimmed over them like a water-strider. Neurologists, I later learned, call this being “well defended.” Worse, his judgment became poor and his business sense, not good at the best of times, turned disastrous. His perception of the world splintering, his horizons warping, he became frustrated, scared, angry. He raged, pounded walls, accused me of all kinds of perfidy. This, the most trusting and uxorious of men.

I will spare you the round of doctors we saw over the next two years. The very first, a neurologist, had known what it was: Alzheimer’s. He was reluctant to venture a diagnosis because it was too early and he had no definite way, except by elimination of other illnesses, of determining the disease. But when we returned to him, at the beginning of a long winter, he suggested, in addition to a battery of cognitive testing, a new procedure: a spinal tap to measure the levels of the protein that causes neurons to gum up, to knot and tangle, obliterating memory, undoing everything learned.

In the waiting room, before the doctor gave us the final report, I sat hugging my overcoat while Bailey watched horrified as a thin, gray-haired, dapper man with a walking stick went around introducing himself to all and sundry, courteous, bobbing his head, smiling hugely, like a celebrity in front of photographers. When he finished his circuit, he started all over again.

“Oh God,” said Bailey, “don’t ever let me get like that.”

Bailey’s amyloid-beta protein level was through the roof. So sad, such a shame, especially for a vital man, said the neurologist, after he had dispatched Bailey to the examination room. Leaning back in his chair, fiddling with his fountain pen, surrounded by teetering files and potted phalaenopsids, gifts from grateful patients, he added, “You will have to say good-bye to the man you love.” Normally I might have asked if he wasn’t being unnecessarily melodramatic, but I had been catapulted into shock, the rush of air displacing my thoughts, my emotions. I sat mute.

Do you know the Irish song that goes something like this?
Maids, when you are young / Never wed an old man.

I asked Bailey what the doctor had said. “A small part of my brain has gone wrong, and he’ll fix it,” he replied.

A deep breath. “That’s not what he said at all.” And I repeated the doctor’s words.

You will think me cruel. I could have lied, gone along with the delusion, but my role in our marriage had always been to bring Bailey back to earth, be his ballast. Left to himself, Bailey became airborne with notions and grand plans. He flew in the face of facts. By sheer will, by wanting something to be so, he would
prevail.

I cried for five days straight, until my eyes were swollen shut. A bill arrived from the doctor, and in the space provided for the diagnosis was written
dementia.
Pretty word, end-of-the-world word. The vocabulary of senility. Other words and phrases came to mind:
gaga
,
away with the pixies
,
lost his marbles
,
nobody home.
Knowing next to nothing about Alzheimer’s other than these cruel, dismissive tags, I went to Barnes and Noble on Eighty-sixth Street, pulled out all the books on the disease, and, sitting on one of those round rubber step stools, worked my way through them, hysteria rising until I thought it would gush from me, gouts of it, like water from a fire hydrant.

I learned the obvious: Without memory, we are nothing. I also learned that the disease wasn’t a slow slide, a long good-bye into nothingness, but more like descending in a malfunctioning, bumpy elevator into something approximating childhood. A childhood imagined by Goya or Buñuel. Or George Romero. Bailey would lose not just his memory of events and people but all his skills, from the most sophisticated to the elementary—from language to control over his bodily functions. He would forget how to swallow, walk backward when he wanted to go forward, become sexually “inappropriate.” Maybe not all of those things—the disease affects people differently, some pacing and cursing as if the hounds of hell were after them, others sinking into immobility and sweetness—but he would, as they all do, forget to remember. Bailey would erode like a sandstone statue, becoming formless and vague, reduced to a nub. This would take, oh, about seven years.

A Greyhound bus out of town. Be gone. That would be an answer. After it was all over, in the middle of another winter, exhausted, cold to my bones, colder still in my heart, I thought about Greyhound buses again, buses heading to warm weather, to Miami, but worried that I would die, like Ratso in
Midnight Cowboy
, before I got there, in my own spreading puddle of pee.

The doctor suggested I join a group for Alzheimer’s caregivers that a social worker from his neurology unit had started. (“Caretaker”—of a human shell—is more apt.) The day of the first meeting it snowed, and the streets filled with slush. Only two other women—dignified, Jewish, in their sixties—attended. We pulled our chairs up to a round table that was too big for so few, and the social worker asked if anything in particular was worrying us. We all shook our heads. To get the discussion going, she broached the subject of sex, although she referred to it as “intimacy.” The house of illness is papered with euphemisms.

The first woman said, “He is my husband. He will always be my husband.”

The second woman chewed on her lip, crumbled. “I can’t. He would like me to, but I can’t.” She started to cry, then gathered herself to say, “You know what I hate? When I’m dressing him, he holds his arms up so I can pull on his sweater. Just like a child.” She thrust her hands in the air to demonstrate. “I—don’t—want—a—child,” she said, hawking up the words, making them gobs of disgust.

Attention shifted to me. I tried to retract my head into my body. A secretary knocked on the door, summoning the social worker to a phone call. While she was gone, the three of us attempted to chat.

“How long has your husband had Alzheimer’s?” one asked.

“Early days,” I said. “Only just diagnosed.”

Silence.

“I can’t bear this,” I blurted. “You’re describing our future.”

“You shouldn’t be here. Not yet. Come later, when he’s more advanced.”

And the two of them, on my behalf, ganged up on the social worker when she returned, telling her that the group wasn’t right for me.

The social worker at the second group I tried, at the Alzheimer’s Association, was as condescending in her cheerfulness as the other had been in her gravity. (Social workers are damned if they do, damned if they don’t.) This time we sat in a circle on metal chairs in a dun-colored room, no table, exposed as pigeons.

A woman my age spoke first. Both her parents had Alzheimer’s. Both? Oh sweet Jesus. After forty years of marriage, her parents, this husband and wife, were strangers to each other. The wife spent her days trying to evict her husband from the house; the husband was trying to do the same to her. In moments of rare lucidity, they joined forces and turned on their live-in home-care worker, to have
her
evicted.

Another woman—diffident, proud, African American, in her seventies—spoke up. She was the caregiver for her sister. The two of them had always made a fuss of birthdays, but now her sister couldn’t grasp the idea of a birthday, much less celebrate one. “What
is
the point?” the woman wanted to know, not sad or resigned but furled with anger. “What
is
the point?”

During this time, Bailey was seemingly undisturbed, except when asleep, and then he clawed the air and shouted unintelligible words, desperate as someone buried alive. I would wake him, hold him, until he calmed down. He’d tell me how he didn’t want to die, not yet, not when he had so much work to do, not now that he had me and his life had finally fallen into place. Have I told you how much I loved him? Bailey: my family.

In his waking hours, chuckling to himself, Bailey started designing a magazine for Alzheimer’s patients. It would include a profile of Alois Alzheimer, an interview with Nancy Reagan, spreads of the later paintings of Willem de Kooning. When that idea lost its appeal, he took out large sheets of drawing paper and began, for the last time, remembering his generous, eventful life. Now, while he worked, he cried. He cried for a year, his face bruising with sorrow.

Disease is expensive, beyond the means of a freelance writer. So I began canvassing all our powerful friends and acquaintances, one of whom had a connection to Niedecker. He nixed the obvious field, publishing, saying that I was going to need serious money. He made some phone calls, and that is how I came to be in an office in a downtown Manhattan tower, wearing a hastily purchased suit and binding pantyhose, struggling with the intricacies of finance and corporate hierarchy, learning to put on faces and be excessively deferential. Ruth among the alien corn.

The year before, Bailey had made a prescient charcoal drawing depicting a wizened man contemplating Lady Death. Underneath, in his graceful script:
There are times at their very beginnings when you wish for their end.

That first summer of Bailey’s disease, when I left the apartment building for work, against all reason, I felt life had possibilities. For a brief moment, after I said good-morning to Ronnie, next to the elevator, and Henry, at the front door, both blank-eyed and bored in the way of doormen conserving their energy better to stoke their grievances, I had spring in my step.

The pavement was always freshly hosed, thin puddles on the concrete, cool air against my skin. The dog-owners from our building were abroad: Carmen with his bulldog, Buddha; Marge with her pug, Peaches. Carmen was dark, good-looking, funny. Buddha is a farm animal, he liked to say, all he does is eat and shit, which didn’t stop Carmen from taking Buddha to the vet in the middle of the night with bulldog ailments, leaving him more ragged than parents of a one-month-old. Marge was surreptitiously smoking. Her husband had died from emphysema, hence the surreptitiousness, although it was not smoking but eating that would do Marge in. Peaches was as fat as her owner and waddled like Buddha.

At the corner of Lexington Avenue, I joined a trickle of people with determined strides making for the Hunter College subway station. There, the trickle became a stream; at Grand Central, a tributary. Possibilities quickly evaporated in the fetid underground air and jigsaw of bodies. Some read copies of the
Times
folded with origami precision or pushed their noses into chunky paperbacks, as if afflicted with acute near-sightedness. Others listened to Walkmans, nodding in tune and lip-synching. I closed my eyes and breathed shallowly, the better to ignore the heat and the proximity of strangers. Only seven-thirty in the morning and already the cloth of my blouse stuck to my skin. Only seven-thirty in the morning and already I was on my toes, wary, ready to go on the offensive at the slightest provocation.

At the Fulton Street subway stop, a press of people oozed like molasses through the turnstiles and up the narrow stairways. Expelled into air twenty degrees cooler, I shook myself to regain my composure, unstuck my blouse from my back. A huddle of shoppers was already waiting for Century 21 to open its doors. I gladly would have joined them if anxiety about the day’s work were not beginning to tie my stomach in knots. The store’s haphazardness and lack of polish made it a cult favorite with shoppers. It didn’t run to air-conditioning or even dressing rooms, so patrons sportingly stripped in the aisles. In a section marked
EUROPEAN FASHIONS
, indicated as such by a scribbled sign tacked to a wall with tape, the more outré and unsellable of last year’s Gaultier and Versace could be found, as every French tourist and drag queen worth their salt knew. Slapping the racks at Century 21 was like being let loose in a costume museum.

I headed across the World Trade Center plaza, skirting the towers, slowing my steps to crane at their immoderate height and listen to the keening that flowed down the fluted aluminum facade. The gods, I liked to imagine, bemoaning the hubris they saw in the pokey skyscrapers, dog-leg streets, and chewing gum-stained sidewalks of New York’s unprepossessing financial district. Then over West Street, on the walkway, a moment of unease at the sight of workers below repairing the damage from the 1993 terrorist bomb blast, to the World Financial Center, built on landfill from the World Trade Center and occupied, along with Niedecker, by American Express, Merrill Lynch, Nomura, Deloitte & Touche, and Dow Jones. The walkway deposited pedestrians in the Winter Garden, an awkward atrium housing palm trees: Trader Vic’s on a grand scale. Through the Winter Garden, a stop for coffee, to Hanny.

Hanny. My boss. My
manager.

No matter how early I arrived at work, Hanny was already at his desk. He sometimes slept under it or at least on the couch opposite, I’d deduced from his rumpled clothes, rather than go home to Connecticut, where he had an unaccommodating wife, as he’d wasted no time telling me. Hanny was unfortunate not just in his wife but also in his name, which was short for Hannibal. Some joked that he should he treated like Hannibal Lecter and locked up, with speeches slipped through the bars. And then there was his appearance, regrettably toadlike: pudgy, with wide-apart eyes, flat lips that stretched almost from ear to ear, and skin that patched with perspiration at the slightest exertion.