I Have Been Assigned the Single Bird

by Susan Cerulean

  Now, when I’d spot Gretchen out on the patio with Woody, sitting cross-legged and graceful on the rattan porch furniture, we’d widen our eyes or roll them at one another. In my friend’s body, I saw the same feeling of entrapment that I felt, as we sat our respective vigils with the kind men who had raised us. In fact, none of the four of us could freely move: Gretchen and I were not ready to be so slowed and stilled in our bodies. But our fathers had no choice. They were incarcerated within the collapsing neural structures they’d taken a lifetime to construct, and there seemed to be no way out.

  Time passed. The winter holidays approached, and I sat beside my father with wrapping paper and ribbon, putting together gifts and cards for the facility’s care-givers. My friend Rebecca was visiting, telling Dad about her trip north by train, and my brother was in town too. Dad felt the currents of activity flowing around him in the room and understood that little of it had to do, in that moment, with him. He thrust himself into the flow of flying words and the back-and-forth, summoning his best effort at communicating his needs, his state of being.

  “I want to go . . .” said Dad.

  A visit with more than one person, or a visit when the full attention was not on him, would create a profound unease in my father. While everyone else still charged about their lives, here he sat, bound to the body and brain he was born with but which no longer allowed him autonomy.

  He mentioned wanting to visit a long green park or go to bed. Each spoken destination was accompanied by physical impetus forward with his body, as if to stand and walk, a movement toward getting up and leaving.

  “Do you want to go to another chair, Dad?” I offered what I could.

  “No!” He was antsy.

  “I’m sorry we can’t go outside, it’s too cold. Do you have to go to the bathroom, would you like me to help you pee?”

  Yes. That seemed like it would help.

  “Now, Sue, clip my fingernails, please.” I was glad he enjoyed the small ways I groomed him. I gave up on my chores, put away the tape and scissors and scraps of paper, realizing how I had contributed to the contrary energies and impulses in the room by not being fully present, by multitasking with the brightly wrapped tiny jars of honey, and the checks, and the conversations that he could not follow.

  “Sue, I need to . . .” Dad said urgently. I moved toward him.

  “What do you need, Dad? A hug?” And he held his arms out for my embrace.

  “If you could travel anywhere in the world, where would you go, Dad?” I was still thinking I needed to fill up the space with talking or dreaming or hope.

  He didn’t reply but reached for the remote control of his chair, which for the most part he’d lost the ability to operate. He pressed the arrow labeled UP, raising his chair to its highest position, EJECT. If he’d had any momentum at all, he’d have shot facedown onto the floor. Again I noticed the impulse to rise and leave an untenable situation, one where he could not succeed in being a full participant and knew that fact to be true.

  “What’s up, Dad? What are you doing?” I shuffled his walker in front of the chair to catch his fall. I could sense the intention to walk, to stand, to move about freely in his body. I could feel the lift of his arms into the fence of the walker and the slightest press of his thighs and his chest, up.

  “Where do you want to go, Dad?” I asked.

  “Out to the side of the road,” he said. “I just want to go,” he said.

  Finally he fell deeply asleep in his chair. His mouth slackened and his breathing grew deep and full as he let go into a place where he could be unconscious, for a time.

  A few days later, a caregiver named Melanie grabbed my sleeve as I walked down the corridor to Dad’s room.

  “Now, I know you don’t mind me getting all personal with you, Sue.” Her words poured out in a rush, compressing the last four frustrating hours into the length of time it took us to walk the hall to Dad’s room. Melanie had strong features, dark brown eyes, and intensely curly hair. I’d seen her smoking outside the kitchen door in the evening between clients, and I’d seen her in animated conversation with a very tall man on the front porch. His aspect was shaky and wild. If that was her husband, I thought, her life must be scary. But Melanie wanted to please me and I appreciated that. Not all of the aides did.

  “I just told your father, ‘Sue is driving up, and she’s not going to be happy finding you here with your jogging pants down around your ankles.’ But he refused to pull up his pants, and when I tried to help him pee in the bottle, we stood there five minutes and he never actually did it,” said the aide.

  Apparently, Dad had fought fire with fire. When Melanie gave up and left the room, “Nurse, nurse!” he had yelled. This dynamic repeated all afternoon, she told me. She’d try to work with him, he’d refuse. She’d leave the room, he’d holler for help.

  In his room, Dad lay in the big blue overstuffed recliner, trying to thread his leather belt through his shorts, which were down around his knees. A gray sweatshirt was sprawled on the floor. He clung to my warm hand with his cool one. Almost always, Dad’s face would light when he first saw me, and he’d tell me how glad he was that I’d come. But this time he didn’t smile.

  “Dad, what’s going on?” I asked.

  His voice was hoarse and gravely. “I’m trying to clean up this mess around here.” His shirt hung open, unbuttoned.

  “Do you have a sore throat, Dad? Do you need some water?”

  “No, I was shouting.”

  I drew a chair up close to his, fact-finding, even though my first impulse was to yell at somebody myself. I knew Melanie and the other aides were hovering outside in the hall, waiting to see how I’d deal with the situation.

  “What made you so mad?”

  “Them shouting at me,” he said. “It was disappointing to have them all ganged up on me.” He began to fidget the white buttons on his shirt, pulling the two halves of his garment together across his chest.

  I knew it would take a long patience to sort out what had happened, so we began with just the first layer, more about how he felt.

  “Sue,” he said. “If you were stepping into an organization, that would be one thing, but if you were stepping into an abyss . . .”

  “Sounds like life feels out of your control, kind of chaotic,” I said. He swung his eyes to meet mine. How does one step out of dementia, once the disease has invaded your brain? Given that there is no cure? I listened to my father state his experience, and I knew he could not. But, I thought, surely if the dementia is an economic or political system, surely then we had more of a choice?

  “Have you had dinner yet, Dad?” I’d passed the other residents gathered in the dining hall. Given his state of undress, I knew he hadn’t yet eaten. Food was always a comfort in our family.

  He didn’t want the beef steak and mashed potatoes the cook had set aside for him on a white china plate covered with plastic wrap. But raisin bran and milk sounded good. I set him up with a bowl of cereal on the blond wood TV table, and while he spooned the food into his mouth, I sat beside him and listened.

  “I have to be more tolerant of the ways of these girls,” he said.

  “You know, Dad, their job is to help you. But you need to do your part, as well. Do you think you could apologize to Melanie for fighting with her?”

  “That’s implausible,” grumbled my father.

  “Can I help you with a shower, Dad?” I asked. He shook his head no. When the Landing caregivers offered to help him bathe, he would cross his arms over his chest and refuse. Usually, he would allow me to groom him, but not reliably anyone on the staff.

  “Then let’s do a shave and a little wash up right here in the chair?” I offered. In his bathroom, I filled a pink plastic bin with sudsy warm water, then loped out to my car to fetch his toenail clippers. If I left them in the room, invariably, they’d disappear.

  After Dad finished his cereal, I soaked his hands, left, then right, in the warm water, trimmed and cleaned his fing
ernails.

  “I wonder why I have dirt under my nails,” he said, watching me dig under his thumbnail. “Since going outside doesn’t thrill me anymore.” He was beginning to relax.

  “It could be food,” I said, “Or maybe bits of skin from your scalp?” He’d developed a habit of raking the tender skin on top of his head vigorously, and “as often as I can!” Scratching off the scabs he’d created on his head seemed to be a way to displace stress.

  “If only I could find your sister Martha,” said Dad. Martha’s troubles worried my father, deeply concerned all of us. “If I could, I’d bring her down here and move her in with me, take care of her.”

  I emptied the soapy water and drew a fresh batch. I snugged a towel around his neck. I knew all the ways he scrunched up his cheeks, how he’d shift his chin and jaw left, and then right, pulling his skin tight to get the closest possible shave. As a child, I’d watched him tend to his own grooming so many mornings.

  “David has enrolled for organic chemistry, physics, and neurobiology, Dad!” I told him. “What a smart grandson I have,” he said. “And where’s your husband?” Jeff was off playing tennis, I said. The muscles of my father’s face were starting to relax.

  I washed his hair. Shampooed, the short silver hairs stood up glinting and shiny, and his scalp was pink, cleaned of scabs and scruff.

  “Once, during World War II, I was in the back of a convoy truck guarding some German prisoners,” he said. “It was so scary trying to figure out how closely I should guard them with my gun.” I’d never heard this story before. It seemed to come out of the blue, but then he confided: “My balance has been so bad lately. I am really scared of falling.”

  The facility’s aides experienced Dad as recalcitrant and resistant, but underneath all that mad, he was scared and confused. I’d still have to deal with them. Either apologize, make up on his behalf. Or scold them. And/or report what had happened to Ashley.

  I squatted on the floor and peeled back the Velcro fasteners of his shoes, wriggled off his socks. He didn’t complain when I submerged his feet in the warm soapy water, but neither did he register pleasure.

  Just before bedtime, Christine, practical, taciturn nurse Christine, rattled her cart of nighttime medicines into Dad’s room.

  “Time for your pills, Bob!” she said. “Can you stand up for me?”

  At first, even using the electric tilt function of his chair, we could not get him on his feet. He could not find a place of balance. It was as if the complex musculature most of us so take for granted, all of those long, core muscles, were collapsing in random directions. No, he could not stand. I knew what the aides were up against.

  Finally, by leaning all my weight into his walker, we were able to half-coax, half-lift him to his feet. We edged a urine-soaked pullup down his legs. An angry red triangle slashed across his thighs and buttocks.

  “His skin is irritated from sitting too long in urine,” said the nurse. We washed his poor old flaccid buttocks with soap and water, and then Christine massaged zinc oxide into the skin.

  I wondered if Dad’s recalcitrance this week could be attributed to the painful butt rash. I knew I was grasping to make sense of a disease that didn’t. But I also knew one thing: in the presence of people he knew and trusted, he did best.

  “I’ve got to sit down, girls,” said Dad. “I can’t stand any longer.” One at a time, I lifted his feet off the carpet and eased on a clean pullup and soft flannel pajama bottoms. Back in his big blue chair, he leaned his head against the ribbed corduroy, and waved a hand at the television screen.

  “Could you . . . ?”

  “Turn on the TV?” I asked.

  Yes, he said, closing his eyes. I dialed the sound way down low, because I knew he wanted me to have something to watch so I’d take my attention off of him. He was too tired to interact anymore.

  I looked at the clock on his bedside stand. The process of mending his day had taken nearly two hours. I can do this, I thought, as I dumped the soapy dishpan full of water down the drain. I know how to get these basic things of comfort done. Perhaps my resistance was even a good thing, I thought—how it delivered me to a deeper level of attending.

  I watched him as he fell into sleep. Recently, Dad had told me I spent too little time on my own work in the world, too much time worrying about and caring for him, so I’d made plans to travel to the wildlife and climate change conference the next day in Orlando. I’d paid the registration and reserved a nonrefundable room. Dad wanted me to go. I wanted to go. I needed to hear what the latest research was showing for the book I was writing about our coast. Yet all the care I’d just offered, the sorting through of my father’s needs, all that would be of no use to him tomorrow. I made a vow to hire more consistent, reliable help.

  CHAPTER 11

  Beulah and the Notebooks

  Here was the one true fact: Dad’s illness, seven years into it, had left him able to do exactly nothing for himself. Not turn on the sink or open the refrigerator or read a book. Not operate the telephone, take a shower, or brush his teeth, not without help. He could not reliably move his own body through space. More than once I had found my father clinging to the rail I had paid to have installed in his bathroom, unable to lower on to the toilet or turn back into the room. He—we—were completely dependent on the attention of the Landing’s staff.

  One Sunday afternoon, I arrived fifteen minutes after the facility’s shift change. There were very few cars in the visitors lot. When I walked in the door I heard piano music. About fifteen folks were parked in the living room in their wheelchairs, but not my dad—surprising, because he loved live performance.

  I noted that Christine was on duty in the nurses’ station—she was always good with my dad. I passed Miss Annie and Miss Abby sitting in armchairs in the sun-room, dozing. Everything and everyone in place, so far.

  But rounding the corner, I heard a dreadful rattle, like an angry kingfisher circling a creek, a loud, mechanical “NO NO NO NO NO NO,” underscored by softer, sharp yelps. I sprinted down the long hall, tracking the noise. Lucy and Melanie and fear and anger and sweat filled my father’s space. Dad’s face was puffy and damp; he roared. The two women, dressed in kelly green aprons, were enforcing a diaper change.

  But Dad had Lucy gripped by the forearm with both of his hands. “NO NO NO NO NO,” he was shouting, holding her back from his body. Grip and bellow: that was all he could manage. I was horrified and they knew it and Lucy tried to cover it over with assurances (“Sue, it is shift change, we are required to check his diaper now.”). Melanie stood her ground and glowered. I dropped my purse on the floor. “Stop it,” I ordered. “Stop what you are doing right now.”

  “I’m here, Dad, you are okay now,” I ducked in close and spoke into his ear, over and over again, trying to soothe. But he wasn’t able to respond, not even to express his outrage and despair, so battle spent was he. “Let’s just get him in his chair,” I said to Lucy, and she helped me ease him into a more comfortable position. Then the two women picked up the sodden diaper from the floor and fled. I’d lost my ability to make nice with them, to smile and connect. I felt my father’s sense of violation. But I also knew how hard he was to assist when he was afraid.

  I crouched on the floor beside my father’s chair, stroking his arm and his forehead, crooning. Blood reddened my fingertips. Now I understood the source of his frequent elbow lacerations. I had just seen for myself how hard he fought when he felt attacked, abrading his skin against the rough blue corduroy of his recliner. My anger was vast; I felt it rise. They are not to force him anymore, I thought to myself. Dad lay still, eyes closed, breathing.

  After a bit, I fetched a fresh peach from his counter, peeled its furry skin with a table knife, and cut it into a small bowl. It had been brought to me from the mountains of North Carolina and its flesh was abundantly ripe. I knew it would comfort his throat, which was spent from all the shouting.

  Lucy returned in tears: I knew she cared very much ab
out doing her job well. In the evenings after the management went home, Lucy often did extra vacuuming and made sure napkins were folded and tableware in place for the next meal, while Melanie and others watched, arms crossed over their chests, or scrolled through their phones.

  When Dad relaxed, I jogged back to the nurses’ station, rapped on the locked glass pane.

  “Christine, they are not to force him anymore,” I cried. I looked in her eyes, pleading. “I swear, Christine, if I have to move him, even to my own little house, I will!” Christine, who was so devoted to her job and without whom Dad would fall between every crack, heard me out.

  The nurse’s brush-cut hair and flat demeanor belied her utter commitment to caring for these old people. She said—I remember it so clearly—she said, “Sue, your dad would lose so much ground if he were moved.” She held my gaze, her brown eyes level and full of truth. “He would have to start all over again, and that wouldn’t be easy at all, for either of you.”

  I took another breath and I thought about others here, the weekend nurse, Danny, whom I’d seen lift my father in his arms like a child, when he could not stand to get in bed. And nurse Paula, whom I genuinely loved, who always hugged me like a sister. And Patrick, the cook; he deserved a book of commendations all his own.

  While we talked, a resident named Miss Abby approached the door. Abby moved like a robot, never turned her neck, never ever smiled, her mouth a permanent horizontal, her face an expressionless mask, holding, I thought, a great terror in place.

  “Go listen to Ms. Vera’s music,” said Christine. “Go sit down, Miss Abby.”