by Mary Hogan
With a lingering sideways glance, I took in the pediatrician’s outfit. It was similar to the one I’d seen in your lobby a while ago, the home we would one day share. Really, did a person need shirts in any color other than white? When you owned suede brogues, did you need another pair of shoes? Oh, wait. Upon a closer look, I saw that his shoes were Wallabees, those boxy suede shoes from the seventies. My heart fluttered. How adorably him. My Blake was no slave to fashion. There would be gobs of space in his (probably walk-in) closet.
He turned another page. Then another. Thumb, lick, grip page, turn. Look at my man go! Suddenly, in a move that a gazelle would envy, the pediatrician was up and striding toward Hudson Crescent. He walked straight for your front door. The very entrance we would pass through as husband and wife, though I wouldn’t expect him to carry me across the threshold. Unless he insisted. And wore a back brace. His exit was so unexpected, so riveting to watch, I missed the chance to seductively say, “Bye-bye.” He left his newspaper folded on the bench. Clearly, the pediatrician’s method of recycling was to leave reading material for someone less fortunate. Why else would he have folded it? Generosity like that didn’t come along every day.
“Ready for a walk in the park?” I asked Lola, my voice aflutter.
We both stood and stretched and crossed the Drive to the long patch of grass opposite the crab apple grove, grinning like puppies.
Chapter Twenty-Eight
WHEN SHE WALKED FAST, WHICH WAS HER ONLY SPEED, HER high ponytail swung like a metronome. She mentioned her name, I think. I liked her ballet flats. I may, or may not, have told her that. A solitaire diamond sparkled on her ring finger. Its setting struck me as too old-fashioned for a fresh-faced young woman. Probably belonged to her fiancé’s grandmother.
“I’m here to help you plan what’s next,” she said. Paul was awake, but only vaguely alert. John and Kate were back in Boston; Brenda was oming somewhere. Isaac and Anita were both at work. I was alone in the quiet.
“I’m sorry. Who are you again?”
She may have asked me to leave the chair next to Paul’s bed and follow her to a cubicle behind the nurses’ station. Maybe I just followed her numbly. I know we both sat down, knee to knee. Leaning forward, the young woman pressed her smooth hand on top of mine and said, “I’m Nicole. A social worker. No need to apologize. It’s common for caretakers to feel fuzzy. That’s completely normal. This is certainly an overwhelming time.”
The only word I processed was “caretaker.” Is that who I was now? Was I no longer Paul’s wife?
A closed manila folder sat on Nicole’s flat lap. Its label was printed with our last name: Agarra. She said, “I have a list for you.”
“List. Okay. Got it.” The air smelled like chili. Had someone brought in lunch? Dinner?
“Paul will need intensive aftercare,” she said.
“Physical therapy.”
“Among other things.” She opened the folder. “You live on the Upper West Side, right?”
“Right.”
“Let’s find options in your neighborhood.”
“Yes. Let’s.” Suddenly, I wondered if I’d remembered to feed Lola that morning. Had I left the glass backyard exit open? Could she get to the doggie door? I flicked my head in an effort to break my brain free from its cushioned shell. How long would my cognitive impairment last?
“Eighty-Sixth and West End, Eighty-Eighth and Riverside Drive, Columbus near Ninety-Sixth.” Nicole rattled off addresses.
“Uh-huh.”
“Seems the average cost is about sixteen.”
“Sixteen?”
“Thousand.”
“A year?”
“A month.”
My jaw went slack. “Sixteen thousand dollars a month for rehab?”
“Well—” She lifted her lips in a half smile. Had she practiced that look in a mirror? “We’re actually talking about skilled nursing care. In-patient facilities.”
I stared. Not comprehending.
“In a nursing home, they will care for your husband around the clock and help him restore as much function as possible.”
“Nursing home? What are you talking about?”
In slow motion, Nicole closed the yellow folder on her lap. “Mrs. Agarra, I know this is hard to hear. But your husband may not regain full cognitive function. We need to prepare ourselves for what may come.”
A headache had started that morning. Earlier, I’d felt it creep toward my temple, my eyeball. Now, it squeezed the entire side of my face.
“Like what?” I asked, even as I didn’t remotely want to know.
“Needing assistance with dressing, bathing, meals. Wandering, forgetting your home address and phone number. Not knowing the time of day or night, incontinence, loss of bowel control, inability to speak full sentences or at all. Some patients develop delusions, hallucinations, compulsions like hoarding or hand washing. Often, it’s worse at night, a symptom called ‘sundowning.’ In its latest stage, patients with severe cognitive impairment lack the motor skills required to walk or eat. Usually, their agitation and anxiety increase, as do irrational fears like an aversion to water or believing they are being poisoned.”
Nicole’s lips were moving and sound was coming out, but I’d been unable to listen past the words “bowel” and “control.” All of a sudden, I felt like a metronome, ticking left and right. No center. She was talking about Paul. Judge Agarra. My man. My there kind of guy.
“This may have happened anyway,” she said. “Even without surgery. I understand your husband had been experiencing cognitive decline?”
“Nothing like this.”
“The brain is the most complex organ in the human body. Some impairments appear suddenly, after a ministroke. Even with Alzheimer’s disease, there is no definitive test for it while a patient is alive. Paul may have already been in an early stage. It’s impossible to pinpoint an exact cause and effect.”
There were those two words again. “Cause” and “effect.” After Paul’s surgery, I heard doctors say them often. As if no one could be blamed for what was happening. As if my husband’s brain had a mind of its own. John angrily said, “They’re protecting themselves from a lawsuit.” It may have been true. All I knew was: Paul had been okay before. Faltering, yes. Unlike himself. Definitely. But he hadn’t needed a nursing home. Before.
“Do you have long-term care insurance?” Nicole asked, softly.
“Um, no.”
“Ah.”
I didn’t appreciate her judgy look. Opening my mouth to tell her that we’d considered it several years ago, I said, instead, “I read an article.”
She said, “Oh?”
“About the downsides. You know, the truth.”
With a small nod, she smiled through tight lips. I knew that she knew what I meant. You had to pay a fortune for years before you needed it; then, when you did need it, there was a waiting period and all manner of hoops to jump through. Especially in New York, where world-class health care has extended elderly life to the point of prolonged disability. Available nursing home beds are as hard to find as an affordable apartment, when you can find one that takes your policy at all. And, many long-term care policies cap the daily nursing home payment at one hundred dollars per day. A joke in Manhattan.
“The patient isn’t doing any of the footwork, is he? The caretaker is. Am I right?” Blood jetted through my veins.
Evenly, Nicole said, “With the help of a social worker, of course.”
“Ah. Good. So, since you’re here, you can help me understand the waiting period, the prequalification, the ‘substantial need’ clause as defined by the insurance company, not the caretaker who’s going out of her mind. What does ‘healthy’ mean, anyway? Can you qualify to even buy long-term care insurance if you have osteoporosis? Arthritis? A family history of cancer? Certainly not early Alzheimer’s or a touch of dementia! Oh. Oops. We don’t like to use that word.”
As she had before, Nicole leaned close to me and set h
er cool hand on top of mine. “This certainly is a distressing time.”
A laugh spurted out. “Yeah, I’d say so. Make sure you tell your other clients to read the fine print in their policies. Like the requirement that their facility must have a nurse on duty 24/7 when many facilities have a nurse on duty for twelve hours and on call for the rest. I’m sure some lawyer came up with that ditty. Can you believe the scam?”
My cheeks flushed pink. “Sorry,” I said, hanging my head. “Distress.”
Nicole nodded and returned her features to social worker mode: slightly raised brows and a starchy smile meant to convey the ideal blend of empathy and sympathy. With forced calm, I slowly said, “Paul’s father died of a heart attack at forty-eight. His brother had a heart attack in his sleep, his sister died of heart disease before her seventieth birthday. Paul and I both knew how he was going to die.”
“I understand,” she replied. “Many families with your resources hire an elder attorney to help them spend down to Medicaid.”
Chapter Twenty-Nine
THE SUN ROSE IN THE MORNING AND THE MOON ROSE AT night. Ordinary life rolled along. Impossible, it seemed, but it did. New Yorkers descended into the subways and climbed onto city buses. Delivery boys in floppy helmets pedaled their bikes through red lights. Nannies pushed strollers with one hand and texted with the other. Dog walkers steered their charges into the park. People got on with it. Amazing.
As if to mock the black hole our lives had been sucked into, sunlight flooded our apartment despite the nippy air outside. The turquoise sky beyond the windows was electric.
After Paul’s surgery, I’d done what doctors tell people not to do: I went online. Pages of blue links popped into view. Statistical abstracts. Downward charts. Blogs. The mouse felt icy in my hand. I clicked, scrolled, read, watched, listened, and felt the weight of my sinking organs.
Postoperative cognitive dysfunction. POCD.
Why had I never heard of this?
“My wife unbuttoned her blouse in the supermarket, muttering, ‘Hot, hot.’ She’s lost her inhibitions.”
“Dad is freaking out all the time. He used to be calm.”
“Can someone please explain ‘executive function’ to me? Mom’s neuro says she’s lost it, but I’m not clear on what it was.”
“Help! My husband bursts into rages for no reason. What can I do?”
Nothing. That was the horrible answer. Nothing could be done.
Anesthesiologist associations denied the sedation connection. No way to determine cause and effect. Anecdotal evidence. Yet, practicing anesthesiologists wrote journal articles advising colleagues to alert their patients to a problem that seemed to be growing by the day. Researchers wanted more studies on POCD. But how could they conduct them? Who would volunteer to go under the knife to see if their brain was ruined when they woke up? How could a physician assemble a control group? Instead, doctors—and social workers—noted the postsurgical deficits reported by families: loss of short-term memory and focus, inability to manage time, problems talking, lower inhibitions, higher anxiety, personality changes. Loss of executive function: the mental skills that help you get things done.
Over and over, I read versions of the same theme: “After the surgery, my elderly husband—wife, mother, father, grandmother, grandfather, aunt, uncle, sister, brother—was never the same.” When the patient lived at all. Mortality rates took my breath away.
In the loneliness of my apartment—how had I ever longed for such silence?—guilt devoured me. Had I known, I would have told the doctors, “Paul hasn’t been himself.” I would have made them listen to me. Though, what could they do? Unbreak his shoulder? Operate without anesthesia?
Nothing could be done. POCD was a heartbreaking waiting game.
I’d turned the computer off and went to bed alone.
While I slept that night, I dreamed I woke up. I was in our apartment. It was a morning like any other morning. My eyes fluttered open at first light. I stretched both elbows out and rolled my neck. In my dream, I suddenly froze. The silence in our bedroom unnerved me. No snoring from the other side of the bed. No guttural plaints of Paul’s nightmares. Lola was sitting on the rug, staring at me. She already knew. One look in her eyes and I knew, too. My heart dropped like a stone in a still lake. I burrowed my face into the pillow and tried to fall back asleep. Childlike, I pretended that a monster wasn’t under the bed. In bed with me. I pled for unconsciousness to erase what I knew to be true.
“Ten more minutes,” I begged God. Let the last drip of my old life run dry before the new one crushed me.
But, of course, sleep was impossible.
Biting down on my molars, I steeled myself. Gently peeling back the covers, I swung my legs onto the floor. I placed my warm hand on Lola’s head. “Stay close to me,” I whispered, even as I knew she would. For once.
Still too frightened to turn around, I dreamed that I walked to the window and slid the bedroom curtains all the way open. I smoothed them into pools of fabric on either side of the sill. Gazing into the world beyond our apartment, I assessed the day, knowing it would be one I’d relive over and over.
“It was the most beautiful sunny morning.”
“It rained so hard the sky was weeping.”
“My heart broke when I saw the fresh dusting of snow. Paul loved this time of year.”
Barefoot, feeling the cool roughness of our wood floor, I tiptoed to Paul’s side of the bed. My hand pressed hard on my chest to keep my heart from splitting in two. First, I saw a lump of bedding. My love’s outline. Next, I saw him. In peaceful stillness, with both hands curled on top of the covers, my husband was where he always was in the early morning. Only now, he wasn’t there at all. His mouth was open, his eyes halfway shut. For a moment I marveled at the obviousness of death. It was so far from sleeping, so clearly lifeless.
As an iceberg calving, I suddenly felt the violence of separation. The abrupt oneness of my new life. Never again would the world look the same. Sunsets would feel unbearably sad; birthday cakes would reduce me to tears. My ring finger would be naked. My hand wouldn’t look like my hand at all. I’d be a widow, no longer a wife. A woman who belonged to no one. No longer could I sign e-mails, “Love, us.” My “us” was gone for good. The gutting of that thought turned my legs to jelly. In my nightmare, I stumbled into the easy chair beside our bed and liquefied. Wailing for Paul. For me. For all we would never again be.
I woke up on a wet pillow.
Before anyone could stop me, I dressed and fed Lola and took the crosstown bus to the hospital to sign Paul’s release papers. I left Nicole’s “Agarra” file at the apartment, on top of the recycling bin. No way was I putting my husband in a nursing home. He was coming home with me. Where he belonged.
Chapter Thirty
ON MOST DAYS, OUR BLOCK IS PRETTY. EVEN ON WINTRY days. The street is wide. There are stoops in front of the brownstones on one side, doormen in front of the prewars on the other. Real estate listings call it “tree-lined” even when the trees are bare. That day—the day I brought Paul home—was especially stunning. Garbage had been picked up that morning; supers had hosed down the sidewalks before shutting off their water. First snow was on its way. The air was sharp and clear.
“What the hell is that for?” Paul had sneered at the metal cane the hospital had provided. He threw it in the back of the cab I’d hailed for us at the hospital. Like a crotchety old man in a smelly cardigan, he inched forward, grousing beneath his breath. He refused the support of my arm. Instead, Paul took so long getting himself situated in the backseat, the driver started the meter.
Paul’s language skills had returned. Despite the swearing and grumbling, I’d seen it as a hopeful sign. But I knew nothing back then.
That first day, as we turned the corner onto our block, a grin widened my husband’s face. Sunlight reflected off the wet sidewalks. Dogs trotted to the park ahead of their walkers, at the taut end of their leashes. Top dogs all. When the cab pulled up to ou
r front door, Paul gazed at our building with the wonder of a child. It had been a week since the ambulance had sirened him away. Astonishing to think of it, really. I felt aged, as if I’d missed my last birthday. Or two. Yet Paul’s abrupt boyishness lifted my spirits. He squeezed my hand and said, “Home.”
Yes. Home.
My husband accepted my help getting out of the cab. I paid the driver, then ran around to open Paul’s door. Gripping his good arm, I rocked him back and forth to work up the momentum to pull his body up. Once he was upright, the driver chirped, “Well done!” That cracked us both up.
“What happened, Judge?” The doorman across the street saw Paul’s shoulder sling and called out to us.
“Broken shoulder,” I yelled back. We’d known that doorman for years. He guarded the elegant entrance to the prewar opposite our front door. All day, every day, he watched our comings and goings. “The only brownstone in Manhattan with a full-service doorman,” Paul often quipped. Then he’d tilt his head back and release the laugh that I loved.
Making a face, the doorman yelped, “Yeowcha.”
Paul shouted to him, “You look fat.”
I froze. My eyes sprung open. “Painkillers!” Flapping my hand in a quick goodbye, I maneuvered Paul inside. Is that what they meant by a loss of inhibitions? Was my man going to unzip his pants in the supermarket?
“Lola can’t wait to see you.” I changed the subject.
“John’s daughter?”
From the start, I saw what I was in for.
Incredibly, Lola didn’t bark when the key unlocked our downstairs door. The moment she saw Paul, she leaped up and ran to him. Our recalcitrant dog wagged her whole body. She cried, whimpered, and moaned with delight at the sight and smell of her master.
“Lulu!” he gushed. “My girl.”
Our Lola didn’t care that Paul got her name wrong. She leaned into his legs and stretched her muzzle up to his face. She gazed into his eyes with pure adoration. Before she could knock him over, I sat Paul on the bench in front of our bed. He ran his hand over Lola’s furry forehead and down her silky ears. He cooed, “It’s okay, it’s okay.” Paul seemed to understand that his dog needed to be forgiven for hurting him. He stroked her back and tickled the top of her freckled head. Rapturously, he said, “Our cat has finally become a dog.”