Midnight in Buffalo and you’re slumped on a stool at McGlennon’s, nursing a pint of Labatt’s Blue. Nothing much has changed here. The bartender looks up from his paperback and scowls at your glass: you’re not drinking fast enough. The muted TV above the bar flashes tonight’s baseball scores.
“So, really, why are you in town, man?” asks the young woman on the stool beside you. She’s heavy-hipped and pretty. Bright green eyes. “I haven’t seen you in like — what? Two years?” When she hugged you earlier, her curly black hair smelled like smoke and apples. She rakes her ringless hand through it now.
“I came to see you.” Big smile. “I knew you would be here —”
“Bullshit,” she says. “Are you visiting your family or something?”
You say, “My mother’s sick.”
“Oh.” She frowns. “What’s the matter with her?”
“She has a degenerative brain disease. It’s called Pick’s disease.”
“I’m so sorry. Is she going to be OK?”
“No, not really. It’s a lot like Alzheimer’s, but the decline is even faster.”
You’ve been living with this for almost four years now. You’re still just as indignant, just as helpless, but the shocked face of sorrow you prepare now is an act solely for this drunk woman’s benefit, for anybody who says, “I’m so sorry,” or, “That must be terrible.” It’s the face they expect a suffering person should have: pursed lips, downcast eyes, slow-nodding head.
“So I’m here to visit her in the nursing home and to spend time with my father. But it’s tough to know what to do.”
“God. I’m sorry. I don’t know what to say.” She touches your hand.
“Yeah, that’s OK. Nothing to say.” You squeeze back.
Her hand lingers. “But your dad must appreciate your help.”
“We have a good relationship now. About a year ago, we sort of declared a cease-fire.” Cue the rueful smile. “We don’t fight about petty bullshit anymore.”
She nods and drinks her beer. You drink yours. An Allman Brothers tune wheezes out of old speakers bolted to the ceiling.
“She’s in a nursing home out in Lancaster,” you say. “For dementia patients. I saw her tonight. She mostly just slept in her wheelchair.”
“Fuck.” Her mouth hangs open. Nice teeth. “How old is she?”
“Jeez, that’s so young!”
“She’s been sick for years now and . . . She was a nurse. That was her identity, you know? It was how she knew herself. Now she fights the staff sometimes. She doesn’t understand why they’re grabbing her. And the only woman they know is this crazy lady who screams and punches.”
Her third-floor apartment is tiny and cramped. She lives alone, except for the cats; she got sick of having roommates, she says. “You want a beer?”
You’re on each other before the beer’s half gone, and she leads you into her little bedroom. It smells sweet and clean, like expensive soap or scented candles: lavender and vanilla and tangerines. She yanks your T-shirt up over your head and unbuckles your jeans and tugs down your boxers and wangles your dick around with her fingers a bit, and you pull her up to standing so you can shuck off her shiny blouse and her dark slacks and unhook her bra and lick her nipples and her pudgy midriff and pull her underwear down to her ankles. Her hand gently grips your shoulder, and her feet lift up, one after the other, as she steps out of her underwear — a million choices the brain has just made, processed innumerable possibilities, synapses, neurons firing — and you push her back onto the bed and fall awkwardly on top of her. She rolls you onto your back and presses her hips against you, grinding now, her palms pinning your shoulders down, her tongue in your mouth. “I want you to fuck me. Fuck me,” she says, spurred by death and loneliness, and you climb on top of her, no condom, no questions.
Afterward, she pads off to the bathroom. The toilet flushes. She comes back smiling, snuggles up next to you under the blankets. “Hi,” she says, resting her head on your chest.
What’s the protocol? When can you finally get up and leave? She’s got one big fat leg hooked over your thigh, and you don’t know her last name. The whole room reeks of sweaty ass.
“Sorry, you know, I gotta get up early in the morning and visit the nursing home, so . . .”
Get dressed, kiss her goodbye, walk out into the still-dark morning.
A person can cope on different levels, including the physical, social, cognitive, and emotional levels. Problem solving, daydreaming, drinking or taking drugs, meditating, getting angry, praying, working out, and accepting the situation are common methods of coping.
Most often, individuals use behaviors that have worked well for them in the past. Sometimes they behave in a certain way because it is the only method they have of coping with stress or because other coping strategies fail to work. Some persons learn to turn to others for protection and nurturance; some turn to chemicals or to food; some rely on self-discipline and keeping a stiff upper lip; others feel better after the intense expression of feelings; some withdraw physically and/or emotionally; still others work out or talk the problem out. Coping methods are as varied as individuals. Some work; some don’t.
— Sue Ann Wooster
Essentials of Adult Health Nursing (p. 63)
Your father is making breakfast in the kitchen. “Intellectually,” he says, “I can accept this choice. She was becoming more than I could handle. I couldn’t lift her anymore.”
Your brain hurts. Temples pulsing. The thought of orange-juice pulp makes you gag. Smile at him. “These people are trained for that sort of thing. We’re not. You looked after her for years.”
“I know, but . . .”
“She’s better off; you’re better off. You made the right decision. The only decision.”
Whether you believe this or not is unimportant. She’s there. He’s here. You’re learning how to be sympathetic.
You’ve come back to Buffalo ostensibly to help out — to hold your mother’s hand in the nursing home, to support your father, however one does that — but now that you’re here, you want nothing more than to run howling from this with your fingers in your ears, to remain a child. Yet you continue to eat breakfast and lunch with him. You continue to visit your mother twice a day, morning and evening, steeling yourself as you walk onto the dementia unit, smiling. The handsome, healthy son. “Have you seen Bob?” a white-haired woman asks you almost every time. “My son Bob is supposed to take me home. Bob’s late. Have you seen Bob?”
Which is more than your mother has said in two days.
Get out of yourself. This wasn’t done to you. Think of him. Put yourself in his shoes. If it helps, use one of your past girlfriends as a visual aid. You fall in love and get married and raise two children who move away. You buy a little ranch house in Amherst, New York, “the safest city in America,” a retirement place with a pond in the back and ducks and sometimes a blue heron. But your zip code cannot protect you from what’s coming. One day your wife comes home from work and starts repeating herself, tells the same anecdote five or six times in less than an hour: “A boy I treated today had two kidneys on the same side of his body,” and you say, “Boy, that’s different,” and a few minutes later she says, “This boy had two kidneys on the same side of his body,” and you smile and say, “Well, I heard something about that,” and she says, “This boy had two kidneys on the same side of his body,” and you nod wearily, and, “This boy had —” For Christ’s sake, how many times are you going to say that?
Your wife begins to forget where she has put things, little things at first: a house key or a sandwich. You both call it a “senior moment,” even though you are only in your late fifties and she is two years younger than you. She laughs and says, “I put a sandwich in the closet?” She writes notes to herself. You find them and read them in horror: “The washing machine is through the kitchen.” “Our home phone number is . . .” One Saturday morning she drives off in her car and three hours later returns on foot, sweating and a little winded but exhilarated by her stroll. “Where’s the car?” you ask her. She stares blankly. “Did something happen to the car?” “Damn straight something happened. You drove off in it. Now, where’d you leave it?” She lifts a trembling hand to her hair. “Please stop yelling at me.”
You would feel helpless. You would be enraged. You would ultimately ignore all the signals, because it would go away — it would have to go away — and life would again be as it was.
On Thanksgiving she puts a twenty-five-pound turkey upside down in a cold oven and leaves it there for three hours before anyone notices. And Thanksgiving gatherings stop altogether. She writes fifty-five Christmas cards to friends and colleagues and family members, but writes only her own name and address on the envelopes and receives fifty-five Christmas cards from herself in the mail, and the Christmas cards eventually stop, as well.
“Went to the chiropractor yesterday,” your father says. He’s wearing a green-and-blue plaid bathrobe over sky blue pajamas and shaking sugar from the bottom of an almost empty box of Frosted Mini-Wheats. “Lifting her, trying to get her up and down stairs. Just those two steps leading in from the garage.” He shakes his head, sighs. “You know I would’ve kept her at home . . .”
“What else could you do?” you say, wincing at the volume of your voice. Your head feels like a popped cork. “The irony of all this,” you say quietly, “is that the only one who would’ve had any fucking clue how to handle this situation was her.”
He smiles wistfully at this. “Isn’t that the truth.”
Consider the kindness and charity of a woman who loved being a nurse, who excelled at it, who became a nurse practitioner and taught other nurses how to become better nurses, a woman who gave out handfuls of condoms and medical supplies at the women’s shelter, even after she was reprimanded for profligacy, and had articles published in major medical journals and who wrote a college textbook and a Ph.D. thesis titled “Multiple Spoken and Written Channels of Communication: An Ethnography of a Medical Unit in a General Hospital.” This astonishing woman, your wife. You were damn proud of her. She was the bright flame. Forced to grow up fast on Buffalo’s east side, the oldest of five, she looked after her brothers and sisters when her parents stayed out all night. She worked in shelters and halfway houses her whole life. You were not as liberal, a Baptist from tiny Cassadaga, New York, but you admired her struggles, her many successes — this woman who recently screamed, “Help! Help!” when you tried to get her into the passenger seat of your car; who muttered, “Go to hell!” when you attempted to change her urine-soaked slacks; who wandered aimlessly about the house, picking up books and holding them upside down, pretending she could still read, so you wouldn’t worry about her. And of course you worried even more, especially after she quit talking, and laughing, and listening. Imagine finally getting to the point where you have to put your sixty-one-year-old wife, your lover and best friend, into the dementia ward of a nursing home — consider all that, process it, and that’s not even close to how bad he’s feeling right now.
He has cut up a banana for your cereal. “Or would you rather have raspberries?” he asks. “I bought some when you said you were coming home. I didn’t know which you like better.”
The stern, critical father, the despot — where has he gone? The old, tired conflict is blurred and almost hard to remember, like graffiti scrubbed from a brick wall: the arguments over your long hair and piercings; your delinquency and his insults and punishments that only provoked further rebellions, which resulted in still-harsher penalties, and so on. How foreign it seems now, like the history of another family that had nothing really to worry about.
It’s 9:30 A.M. Your mother’s asleep again in her wheelchair, her cheek smushed by her fist. Why is she sleeping so much? Are they sedating her? Or is this a coping method, a defense mechanism? Does she know she’s in a nursing home? Maybe she closes her eyes and hopes that when she opens them she will be a young woman again, recently married and working double shifts at Buffalo General. Probably her thoughts are nothing at all like the ones you attribute to her.
Today is August 19, 2001, the bulletin board says. The weather is [a yellow cardboard sun]. The next major holiday is [a smiling cartoon man in a red tie leaving his office].
Today she’s in the Nature Room: pale green walls hung with framed photographs of sycamores and elms, a forty-inch television set, and a door that opens onto the courtyard. You sit on a lumpy love seat next to your mother’s wheelchair, rubbing the dry skin of her forearm. Your father brushes her hair gently off her forehead. Six old women and men sit mumbling and rheuming and drooling in a semicircle around you. After a while, you ask your father if the three of you can’t maybe move down the corridor into her room. He shakes his head. “No, they try to keep the residents out of their rooms as much as possible. Creates a sense of community.” Your mother starts to snore. Her breath smells rancid; she hasn’t brushed her teeth in weeks and nobody can make her brush them. Your father stopped trying to do it for her because every time he approached her with a toothbrush she screamed, “Help! Help!” and pushed against his hands. What are the options? She will swallow mouthwash or spit it angrily at the mirror. The attendants run a glycerin swab over her teeth and gums each morning, if they can get her to open her mouth.
At 11:30, your father looks at his watch. “Well, what do you say?”
That means: Let’s go and come back later.
Alzheimer’s disease (AD) is a progressive, degenerative disorder that causes cerebral atrophy. . . . The disorder develops insidiously, marked by progressive organic mental changes and language dysfunction. Dementia, the deterioration of intellectual capacity, is characteristic of AD. . . .
The client is not well attuned to the present, but reminiscing can be supportive because long-term memory is more intact. Encourage the family to help the client reminisce about familiar persons and events. Reminiscing is comforting and increases the client’s self-confidence. Communication strategies are important. Conversation should be clear and simple, using short words and sentences that are readily understood. Repetition is required.
— Sue Ann Wooster
Essentials of Adult Health Nursing (pp. 69-70)
“I love you, Mom. I’m here for you.”
You’re sitting in a shaded area of the courtyard. She’s in her chair; you’re beside her on a picnic bench. She has a thin white blanket tucked underneath her chin. Through the open door of the Nature Room you hear a burst of machine-gun fire erupt from the big-screen TV. You rub your mother’s arms and shoulders through the blanket.
“I love you, Mom. I’m here. . . . Are you sleeping? That’s OK. I’ll just sit here and be with you. I enjoy being with you.” Beyond the cherry-stained wooden fence, condominiums are being built. A dump truck slams down a load of bricks. She does not stir. Wind flutters her hair.
After thirty minutes, you stand up and stretch. She’s still asleep. You walk around in figure eights — hungry, bored, ready to leave. Try to stay for another half-hour.
“I’m going to bring you into the sun now,” you say from behind her chair. “I’m right here with you. . . . Feel that? Feel that sunshine? It’s warming you up. It’s healing you and giving you strength.”
On the opposite side of the fence, another load of bricks crashes down. A man shouts, “Ask Jimmy about the back line!”
“I’ve been hanging out a lot with Dad lately. We’re getting along really well. Of course we’re always talking about you. . . . Feel that sun yet? Remember how we’d go to John’s and walk on the beach? And I used to skip rocks out on Lake Erie? And you’d roll up the bottoms of your pants and walk out into the cold water? . . . Imagine cool water on your feet right now.”
It’s way too hot out here. What were you thinking? Her eyelids will burn. Bring her back inside the Nature Room.
A June morning, 1998. Your parents have just returned from the hospital.
“What did they say?” you ask your father in a low voice.
“They said her brain is shrinking,” he tells you.
You stare at him, speechless. Her brain is what?
In the family room, she lowers herself down onto the couch, falling backwards until the cushions cradle her backside. She stares for a moment at a magazine splayed open on her lap, then lays it aside. She turns her attention to the cat. “Hello, beautiful,” she calls. “Love you, pumpkin.” The slim gray cat pauses in her graceful promenade through the room, turns her head toward the familiar voice. “Come. Couch. Here,” says your mother, patting the cushion beside her.
“What do you mean?” you ask your father.
On the kitchen counter, he crisply divides her meds with the skill of an amateur pharmacist: Depakote, Prempro, HCTZ.
“We got the results of her MRI today. She’s got something called Pick’s disease.”
You watch him fill three plastic pill cases. They stack on top of each other like children’s building blocks. On the sides are strips of masking tape marked, in your father’s precise penmanship, Morning, Noon, Night.
January 1999. A psychologist is interviewing your mother in a large, well-lit office. Wet snow falls in clumps outside the windows. She does not know the day of the week, or the month, or the year, cannot say who is president. Three plus four equals twenty, she says. How old is she? Nineteen years old. How old? Thirty. Her husband, seated next to her, was killed in a war. She has fourteen children, all named Burt.
“Can you tell me what your last name is?” asks the psychologist.
Your mother sneaks a glance at you. “Hi, hon,” she says.
You smile back. “Hi there, Mom.”
She fiddles with a button on her blouse. Again she smiles at you, as if for the first time. “Hi there, hon.” Her irises appear gas-flame blue because of the aquamarine blouse your father selected and buttoned for her this morning.
“Do you know your last name?” asks the psychologist.
Your mother looks down and scratches her wrist, nodding. “Well, that’s . . .” She flicks a piece of lint off her black slacks. A moment passes in silence. Nodding her head, she leans forward and opens her eyes wide. Then she leans back and chuckles to herself. She is no longer listening.
The psychologist tries again to get her attention.
“What?” Your mother looks up defiantly. “What’s the matter?”
A Saturday morning, February 1999. While your father is out — shopping for groceries, bringing his shirts to the dry cleaners, taking a needed break — you entertain your mother in the family room.
“It’s nice out today,” you tell her. “The snow has pretty much all melted. I’d say it’s up around forty degrees. Are you warm enough? Do you want your blanket?”
“It wasn’t . . . on the steps . . . ,” she says, and smiles. “Bell ding.”
She is attempting to be witty for you. But her humor is lost, a diamond sunk in slush. Nervously she folds the Kleenex on her lap into halves, then quarters, then eighths. Then, very carefully, she unfolds the Kleenex and starts over.
“Maybe it’s just . . . tucky,” she says. “Tucky snaps.”
Hearing herself, she waves her hand. “It’s not. . . . It’s trucky.” The words leaving her mouth flutter around her like small, confused birds that keep bumping into each other in midflight.
“Did trucks come by today?” you ask. “Were they plowing the street?”
“No, it’s not . . . ,” she says, and tries to stand.
Medications and inactivity have bloated her body — in six months her weight has jumped from 130 to 185 pounds — and it’s difficult for her to stand on her own. She rocks her torso forward and back, trying to build up momentum. Finally she heaves herself up off the couch. She takes unsteady toddler steps across the room, bulgy-legged, as though each move might plunge her through the hardwood floor. Her diaper crinkles audibly. Roaming is something she needs to do, and you let her go without trailing behind her. She has lost so much already. No need to prohibit this urge. Just so long as she doesn’t wander out into the garage (the door is visible from where you sit), she’ll be fine.
Ten minutes later, after a thorough tour of the house — dining room, kitchen, hallway mirror, back bedrooms — she re-enters the family room. The pockets of her beige corduroy slacks are crammed full of small, smooth objects that have temporarily appealed to her along the way: coins, keys, colorful paper clips, baby carrots.
“Well, what a surprise!” you say. “It’s great to see you! When did you get into town?”
She is holding an empty bottle of Windex. “Well, hello.” She smiles and staggers toward the couch. She plops down next to you again, the cycle complete: departure, return.
“Allow me to fetch your favorite blanket, madam.” You stand, flip the red afghan off the back of the couch, and, with a flourish, spread it across her lap. “Will that be all for the moment?” you ask. “Or will the lady be requiring a snack? I have a nice blueberry yogurt today.”
She giggles at this. “Well, that’s . . . ,” she says, pleased.
You arrive at the nursing home one morning to find a nurse with dirty fingernails swabbing sleep out of your mother’s eyes with a solution of baby shampoo and water. The hand that holds the tiny plastic cup of solution is gloved. The hand in your mother’s face is not.
“Could you put a glove on your other hand, too, please?” you ask the nurse. “Your fingernails are a little dirty.”
She inspects her hand. “Oh, you know what it is? I went tomato picking with my husband yesterday. They’re stained, not dirty. But I’ll put a glove on, sure.”
Don’t make enemies with the staff. Simply smile. “Thanks.”
Later, a burly aide with a long, braided ponytail, two gold hoop earrings, and a black goatee wheels your mother into the bathroom and closes the door behind them. She screams. She always screams when somebody attends to her, but this time you wonder if her scream signifies sexual abuse. The aide comes out with her diaper bunched up in his fist, like a workman carrying his bagged lunch.
Four hundred years ago, this man might have been a pirate, looting and pillaging innocent seagoing vessels. In 2001, he’s wearing sherbet green hospital scrubs and gently wiping your mother’s vagina with a moist towelette.
Late at night, while your father lies curled in a Scotch-induced slumber on his side of their big bed, you wash your face and change your shirt and head out to McGlennon’s for a drink. You plan to pump some quarters into the jukebox and listen to drunken, raised voices and hopefully bump into the dark-haired young woman again. “I’m happy to see you,” you’ll smile. I’m confused and depressed, but I’m not a bad person. “How have you been?” But no cars are parked out in front of McGlennon’s tonight. The lights are off inside. You keep driving. On Elmwood Avenue there is a bar on every block, each filled with young people in no hurry to go home and face their empty beds.
In the Common Room, a woman seats herself behind the organ and begins to play. It’s uncertain whether she is a patient or a member of the staff. The aides are passing out plastic maracas that make your mother wince every time one is shaken by her ear. “Do you want one?” a woman with a bulging pillowcase asks you.
“Are you sure?”
The organist launches into “On the Good Ship Lollipop.” A fat aide starts banging a tambourine against her thigh in a complicated 9/8 beat. She shimmies her hips from side to side, eyes shut, and lifts her meaty arms over her head, swaying. An old woman has unbuttoned her blouse and is trying to tug the tails out of the elastic waistband of her slacks. It’s like Mardi Gras in here today.
You wheel your mother down to her semiprivate room. You haven’t seen or met the roommate yet. Mom’s blanket drags the carpet, and you grab it on the fly, flip it back up onto her lap. She doesn’t belong here with these people. She is not one of these people. But who in the world expects to end up here? These folks were all teenagers once. They laughed and fought and ran across beaches and made love and worked hard and raised children of their own. They were respected somewhere.
As a nurse, your mother saw many painful, protracted illnesses and was not sentimental about death. She used to say, “If I ever get like that, do me in.” And she meant it. She supported euthanasia in cases of terminal illness. She might even have planned to commit suicide when she was diagnosed, but her disease overwhelmed her before she could act. Some nights, when you can’t fall asleep, guilt hounds you. Wouldn’t it be merciful to put a pillow over her face or somehow obtain a lethal dose of morphine? Her prescription pad sits on her desk at home. You could write out a script and forge her name. You are failing her, your poor mother. . . . Don’t lapse into bullshit self-pity. Get out of yourself. It’s the only way your presence here will be of value. You didn’t cause this to happen. You cannot control this.
You guide your mother’s chair down the carpeted corridor. Her head sags to one side, her mouth open as if she’s just heard an astonishing piece of news. The “memory box” outside her room — a glass case with three shelves, like a medicine cabinet — contains a selection of photographs chosen by your father: their gray cat on the living-room carpet; your mother dancing with you at your sister’s wedding; a black-and-white yearbook photo of your father. Every room has its own memory box.
“I’m going to come back later, Mom,” you tell her. “I’ll be back soon. I love you.”
Lunch with your father. Burgers and fries. You both talk a little about how you’re feeling, but mostly the meal is punctuated by long silences, averted eyes. Neither of you knows exactly what to say. You’re still learning how to talk to each other, though you’ve spent dozens of hours already talking about her illness: late at night at his house, on the phone, via e-mail. You’ve been with her through every stage of this disease, flying home on cheap flights at least once a month, and the only conclusion is this: Nobody knows anything. Not you, not the psychologists, not the physicians. None of the aides has heard of Pick’s disease. You hadn’t either until four years ago. It has been a swift, relentless decline. She is ten years younger than anybody else on her floor, and her body is healthy. She could conceivably live for many more years at the home.
“That place is a fucking dump,” you tell your father.
He looks surprised. “It’s the best facility in Erie County. We were lucky to get her in there.”
“A bed opened up at the last minute. Everywhere else was a six-month waiting list. A year for some places.”
You say nothing.
“I know the director. He did me a favor, bypassed other people to get her in there.”
“Last night it was like pulling teeth to get anyone to change her. They argued over her head, back and forth. She can hear that. She’s not a zombie. That talk gets in and diminishes her self-esteem.”
He nods and forks up a ketchup-drenched French fry. “Believe me. I visited five of these places. This one is the best.”
“Maybe. But it’s not great.” That sort of comment doesn’t help. Just tell him what you’ve noticed. “I can see it on her face. She knows when she’s getting bad treatment — when they’re rough or loud or abrasive. But she can’t say a thing. She can’t use language to defend herself anymore. It’s like she’s standing behind this screen, and you can see her in there, and she can see you.”
He nods his head wearily.
“The way they run that place . . . it’s so contrary to everything she stood for. She cared for people. They don’t give a rat’s ass about her or anybody else. She’s just another cash cow. Keep them doped up so they don’t cause trouble, but keep them alive.”
He shakes his head at this. “That’s not true,” he says.
“I’m walking down the hallway yesterday and see another lady, about a hundred years old, flat on her back in her bed. Her bedside radio is on super loud. Guess what’s playing? Bobby Brown, ‘Humpin’ Around.’ Loud. The chart probably said she should have her radio on, but they didn’t bother to think about what she might want to listen to. She hears that. And Mom hears it when the nurses moan about having to change her ‘pissy underwear.’ What do you think that does to her?”
There are tears on your father’s cheeks. They drip down from behind his glasses.
“Can I get you gentlemen anything else?” asks the pretty blond waitress.
Help families to recognize the need for skilled care and think about alternative placement for the client. Appropriate referrals to social-service agencies assist families in investigating the chronic-care facilities. Families need support in dealing with the anxiety and guilt of separation from the client, as well as the change in their own roles and responsibilities.
— Sue Ann Wooster
Essentials of Adult Health Nursing (p. 71)
“She’s being toileted,” says the redhead at the nurses’ station. It’s 3:30 in the afternoon. The weather is — dark and rainy actually, but the yellow cardboard sun remains in place. “She’ll be out in a minute.” She offers a half smile, then turns her attention back to her clipboard. This is not the nice nurse from this morning.
Your father smiles. “Every time I come she’s on the toilet, it seems,” he says to her.
“Well, if you come right after meals, that’s when we toilet them.”
When your mother needs to go to the bathroom, they use a Hoyer lift — a sort of crane for human beings — to hoist her body out of bed. She dangles above her sheets, mystified, like a cartoon baby in a stork’s sling.
“Did she eat recently?” your father asks.
“Uh, no. Not lunch. But we try to toilet them every few hours anyway, to avoid accidents.”
Today’s Buffalo News is displayed prominently on the counter. Front headline: “Hospital Attack Wounds 3.”
“But she ate her breakfast OK?” Your father flashes another smile.
“Yep. All of it.” The nurse smiles back. “Good appetite this morning. We’ll bring over a sandwich later and see if she wants that. She slept right through lunch.”
It’s a war of smiles. We’re all happy to be here. We like doing this, coming here, seeing this. We like watching a competent, educated woman regressing to infancy: Hello. How are you? Fine, thanks for asking. And who’s this gentleman with his hand on his penis? Oh, that’s the former superintendent of schools. Good day, sir.
And here she is now, wife and mother, being wheeled across the carpeted floor by a bored-looking woman in tight pink polyester slacks.
“Hello, Susie,” your father says, bending down to kiss her cheek. She is asleep, breathing heavily out of her open mouth, her head fallen to one side. An almost-bald woman, tall and thin in her peach-colored pajamas, walks by carrying a pillow. “On my sweetie, sweetie,” she says.
A man in a wheelchair nods to himself. “That’s a bad puppet,” he says.
“Hi, Mom, how are you feeling?” you ask brightly, and as soon as you say it, you realize your mistake. Asking direct questions about emotional states is not the proper way to communicate with a Pick’s patient. Declarative sentences are best. You recover quickly. “You look pretty. Got your hair done. Very nice.”
It’s not a bad cut, just one she would never have worn voluntarily. They don’t know her here. They will never know her, who she really was. Give them a break. How could they know she would never consent to wear her hair this way?
The nurse is standing behind you. “Yep, she was in the parlor after you left this morning. They did a nice job, I think.”
“They sure did,” your father lies. “She looks lovely.”
Your mother opens her eyes and stares up at you, and you try to take her hand — you should be holding her hand — but she will not unclench the fist she has made. A hunched old woman moves slowly along the wall, saying, “My father died, my mother died, Mabel died, Frank died, and everybody thinks I had it easy.”
Your mother shuts her eyes and sleeps for ten minutes. The nurse brings over a sandwich and a can of cola. “See if she wants this.”
When she wakes up, you ask, “Are you hungry?” and she nods, so you feed her the sandwich slowly, bite by bite. She can’t really focus her eyes, but she trusts you, apparently, and opens her mouth. After every third bite you hold the red can of Shasta with the bent white straw to her lips.
“That’s right, Susie,” your father says. “That’s good.”
“She’s doing good, isn’t she?”
“Yep. She opens wide for the sandwich.”
“But the straw is smaller.”
“Yep. And she can tell the difference.”
“You’re doing great, Ma.”
“Boy, you are hungry, aren’t you?”
“She’s got a good appetite.”
“Well, she always liked tuna fish.”
Standing before the nurses’ station, you can see two nurses through the glass window. They’re talking about something. One is looking down at a chart. The other points at something on it. Impatiently you step to your right, putting yourself directly in the first nurse’s line of vision. She does not look up. You sigh.
Next to you is another visitor, a woman in her late fifties. “Are you new here?” she asks.
“Yeah, my mom came in last week.”
“It’s a great place. They’re very good and very friendly here.”
“You think so?” you say in a low, conspiratorial voice.
“Oh, yes. My mother has been here for four months now. I’m happy with her care.”
“I don’t know.” You sigh again. “I guess I just feel . . .”
“You’ll get used to it. It’s never easy to see someone you love in a place like this. But they know what they’re doing here. Just be patient.”
Keep in mind when assessing mental function that many clients and family members view the brain with awe. Their concern over the diagnosis of a disease affecting the brain can cause fear. In addition, some tests may seem to be a test of intelligence and may cause misunderstanding and apprehension.
— Sue Ann Wooster
Essentials of Adult Health Nursing (p. 65)
It’s 2:30 A.M. and you’re driving aimlessly around town, windows down, radio blaring. Wet, steaming streets of Buffalo. Niagara to Forest to Delaware, that rich loop of memories: schools and sex, fistfights and dead-end jobs, late-night walks with ex-girlfriends, drunken dreams. Elmwood to Hertel to Colvin: Twelve years old, being chased by the Kenmore cops, hopping fences and hiding on a garage roof. BB guns and skateboards, cases of Canadian beer, garbage picking, and rock fights at the railroad tracks. Skinny joints (“Do you think it’s oregano?”) and three-dollar hits of acid. Tires slooshing through puddles. Her bed has rails. The mattress is narrow, thin, and plastic-coated. Is she awake right now in that somber room that is not her own? Blinking up at the ceiling with her hands fisted beneath the blankets? Does her roommate snore or cry or screech? Metallica bursts through the car’s speakers. You are alone here, avoiding old friends who paint houses for a living and snort coke, and sometimes heroin, in men’s-room stalls. Dead streets of a dying town. Neon bar signs on otherwise pitch-black blocks, a glowing smear of green and red on wet pavement, Christmas all year round at the Stumble Inn. Harleys leaning against their kickstands out in front of Wesley’s Tavern. Loaves of rye bread emerging right now — Hot, fresh — from the ovens at the Grant and Lafayette bakery. A lone prostitute in a dirty sweat shirt and stonewashed jeans waves to you from a doorway. You slow down, then accelerate. Streetlights blink out high overhead and come back on after you have passed. The Niagara River glistens black, like a massive oil spill, beneath a drooping necklace of harbor lights. You will not sleep a minute tonight.
When you were a child, the dining-room table was piled high with your mother’s books and yellow legal pads and messy stacks of photocopies. You liked flipping through her hardcover books and learning new words: Corpus callosum. Staphylococcal. Phalanges. Late at night, she worked for hours on her textbook, Essentials of Adult Health Nursing. She was forty-two years old. Sometimes she fell asleep at the table. Published in 1988, it would be taught in nursing programs across the country.
Dementia is a Trickster, fleet of foot, changing shapes; it baffles, then disappears as quickly as it arrived, and you are left standing in a kitchen, holding scissors and looking at the cut-up mail and potholders and magazines around you. Or you’re yanking all the damn cushions off a couch and tossing them across the room. “I’m not . . . Because it doesn’t . . .” Or you’re standing alone in the backyard and hugging a family-size jar of applesauce to your chest. Rain drizzles down your cheeks, your neck, your chest. Wet grass blades are stuck to your forehead. You start to cry, because it doesn’t . . . And you can’t figure out . . . And why isn’t it . . . ?
You sit next to your mother in the nursing home. Four hours you’ve been here today: the longest shift yet. Tomorrow you will shoot for four and a quarter. If she wakes up, you should be here. Somebody should be here for her.
The lenses of your mother’s eyeglasses are flecked with dirt and dust. Around her neck is a round silver pendant the size of a half dollar: Memory impaired. To help Sue Ann, call this number.
She sleeps. The two of you, father and son, sit side by side on a love seat. Twenty minutes pass, half an hour. They must be sedating her. They claim they are not. An hour passes. You whisper words in her ear and run your fingers through her hair. Your father strokes her hand. An old woman in the shower room shrieks. The TV in the Nature Room is blaring hate. Cars are jammed nose to ass on the road outside, farting exhaust. It’s six o’clock at night.
“Well . . . ,” your father says. He stands and bends over her. “See you tomorrow, Susie.” He kisses her lips and forehead. “Love you, hon.”
Carefully you pull her glasses off her face. She opens her eyes and glares at you. Rubbing the lenses of your mother’s glasses on your T-shirt, you whisper, “I’ll clean these up for you. Because maybe you’ll want to look out the window later, or watch some TV.”
You slide her glasses back on her face, hooking them gently over her ears.
“How does that feel, Mom? Is that better?”
She says nothing.
On the inside of her arm is a pink welt where somebody roughly pricked her for blood. Once, when you were twelve, you visited the clinic where she worked. In between patients she showed you how to check your own pulse and how to palpate a chest and back. You watched her take blood from the yellow-bruised arms of prostitutes and addicts, the skinny arms of children and people in wheelchairs. She gave physicals, too, but you weren’t allowed to watch those. Afterward, while she scribbled notes in a chart, you shot questions at her. “What would happen if I drank my own pee?” “What’s worse: cancer or Parkinson’s?” “Can I catch herpes from a toilet?”
“Boy, he’s inquisitive,” said one of her colleagues. Meaning: He’s a pain in the ass, huh?
But your mother answered every question patiently, comprehensively. She spoke to you as she would to an adult. She didn’t condescend to you. There were enough mysteries in the world for a boy to contend with — why complicate things further?
You walk out to the car with your father. It’s a warm August evening. Your parents would have been sitting on the back porch tonight, having a drink and laughing. Instead, you’re leaving this so-called home behind and driving to a house filled with her clothes and pictures. The books on her shelves. Her cat.
You spent a decade running away from them, drinking and fighting, thinking it was the only way to become a man. Standing by the passenger-side door of his car, you wait for him to click the automatic locks. Tonight you’ll drink a few beers together and stare out at the pond. You’ll ask him about her. What was she like when they first met? What attracted him to her? You cannot seem to collect enough memories.
Your father drives home carefully, with both hands on the wheel. You notice he’s doing twenty-five in a thirty-five. He wears beige pleated slacks and a white button-down shirt with two Cross pens in the breast pocket. They’ve been married now for thirty-four years, and this is their first separation. You have never been that devoted to any woman. You’ve never had the courage.