His body overlapped the hospital chair, with only the arm rest big enough to hold his arms. He was to be my patient for the day, to assess, to learn from. And did I say he was dying? He wasn’t happy about being here, the VA hospice unit, but at home he was falling and his wife couldn’t catch him- literally and figuratively.
You never realize when they say PTSD what that truly means to the person experiencing it. That day I found out: I went where my WWII veteran took me-without knowing why, we went there together. Our conversation started off innocently: I asked him about coming back to the VA, how he was coping. “Well, I hate that music across the hall! I like country”. “You’re a man after my own heart” I said to him. “You like Hank Williams?” He barely smiled, nodding his head. I was thinking how do you question someone about their impeding death, the final failing of their body? My question about pain took us down that road: I wanted to know if his pain was being managed, were we addressing his needs and if not what could we do about it. So, the pain scale gave me the “in” to a kind of pain him and I shared: the pain of a past we could not undo, but relived in a vicious cycle. Remember, forget, remember, forget.
“On a scale from 1 to 10, with 10 being the worst pain you ever experienced what would you say your pain is today?” Silence. He stared at me, but he was gone, gone, gone. “You really want to know?”
“Yeah, I do. I want to make sure we’re helping you”.
His 93 year old eyes, barely visible beneath drooped eyelids, answered my question. Tears welled up, flowed over with a purpose like rocks in a mud slide, going down, down his body, with his chest absorbing every blow. His lips moved and words flowed as if he were in a silent movie: no sound, but emotion that ripped my heart out. I leaned in, held his hand and did all I could to hear every word.
“I wanted my mother” he whispered, “I called out to her”.
“I was lying there, bombs exploding all around me. I reached and grabbed my buddy’s leg. That’s all I got, his leg….I w-a-n-t-e-d my m-o-t-h-e-r.” The pitch of his voice peaked at wanted and fell with mother. He said it over and over and over. I squeezed his hand harder, pulled myself to him, and finally gave in and placed my head on his shoulders. What words could bring him back to me? What could I do to save him? It wouldn’t help to tell him I wanted my mother, too.
“Did she come?”
“She did. She stood there beside me, put her hand on my leg. I don’t know why, but I crawled away from my buddies. I should have stayed. I should have stayed.”
He stopped talking and I became more afraid of his past and mine. But I wanted him to know there’s no shame in surviving. “You did what anyone would do. You survived for a reason.” He went on to tell me the gruesome facts of war: How death constantly seeks you out and somehow someway, you beat it down. His friends died, he died, but this body, this shell that held his heart lived on. Now, at the end of this life, he wanted someone to know, he wanted me to know his pain. I touched his shoulders, feeling underneath a man who carried the weight of a war and the guilt of a survivor. We all think we could have done better, we all question those split second decisions we make to survive. Back then he wanted to save his friends and today he wants to save himself. After our hour and half together, I didn’t go back the next week. He might be dead or he might still be sitting in his chair
Hating the music across the hall and himself.
BIO: Sylvia Parker graduated from Yale School of Nursing in 2008 within the Gerontological specialty track. Currently working at Masonicare Health Center in Wallingford, CT since 2008 as an GNP-BC, Sylvia oversees the care of 150 residents within long term care and dementia.
“Hi there, sweetheart,” the patient said in a soft, raspy, whisper of a voice, as I entered the room cautiously. She sat upright in bed, her thin hands with long fingers folded delicately in her lap. “I know they say my name’s William, but I like to be called Jane,” she offered. I nodded nervously, clutching a list of very intimate questions in my perspiring hands.
“Hi Jane, it’s nice to meet you,” I said. I introduced myself as a student nurse and inquired if I could ask her some questions. My assigned patient had been discharged early in the morning. In a rush to help me complete the interview requirement for my care plan, my preceptor had sent me in to see Jane without allowing me so much as a glance at her chart.
“She’s HIV positive, has been for twenty-five years. Oh, and she’s a man. But she wants to be a woman—goes by Jane, she’ll really like you if you call her Jane.” My preceptor had briefed me outside the patient’s room and hurried off to help another student give meds. Now I sat, feeling the full effect of my lack of nursing experience as I faced Jane, unsure of what to say. She appeared about forty-five, sitting tall with a regal posture, her dark skin and shriveled body clearly tormented by HIV over the past few decades. There were so many questions that begged asking, for the purposes of both completing the interview and satisfying my growing curiosities, but they were all very private questions I felt I simply didn’t have the right to ask.
“So, um, why don’t you just tell me a little bit about yourself,” I started. I looked at the list in my hands. It was littered with questions I wouldn’t dare ask my family or closest friends. Where I come from, we don’t speak about such things. My upbringing in a small and safe New England town that is full of gossip, where there is strength in holding in all your hurt and secrets, had not prepared me for the story I was about to hear.
Jane began to talk, offering little glimpses of her life. I began with seemingly unobtrusive topics. I asked about her relatives. She told me stories of her family—how her parents had died of substance abuse, how her siblings had met similar fates at the hands of addiction or infections, and how her remaining brothers had disowned her because they disapproved of her lifestyle and were embarrassed of her disease.
As she opened up more and more, I began to ask about her illness and how she contracted the virus.
“Ya’ know, I can’t tell when I gots it. But it was a long, long time ago. I just got sick. I dropped out of high school ‘cause I was doin’ drugs. Heroin an’ then crack, I was always usin’. I started sellin’ myself to pay for it. An’ I always liked pleasin’ men and I liked dressin’ up real pretty like a girl to do it. I was just walkin’ the streets. I don’t know if the AIDS came from the needles or from the prostitutin’, but it got me.” She paused. I exhaled. Her sharing the plain and honest truth with me had broken the tension in the room. We went on to discuss her apartment and finances, her sexuality and relationships, her long history of sexual and physical abuse, her struggles with drug addiction, and her chronic loneliness. The tragedies of her life continued to shock me and I felt myself hurting in the deepest depths of my soul. I came to the last question on my list, now irreparably crumpled by my nervous hand-wringing.
“What hopes and plans do you have for the future?” I immediately wanted to swallow my words. This person in front of me was frail and dying of AIDS. What a blatantly insensitive question to ask someone who may not live much longer. And then I realized that my fear and avoidance of the topic was much greater than hers.
“Well, I know I ain’t done a whole lot a’ good in this world,” she said, “but I hope that when I go, I go home to meet my Lord. I hope and pray He’s forgiven me for the wrong I done. An’ if He takes me soon, I’ll be ready,” she answered, “but, if He blesses me here on earth, I hope I won’t be lonely for the rest of my life. I don’t need a lover, I just need a partner in this world—someone to share the rest of my days with.” And in this moment, I found that despite the class, race, sexuality, gender, religion, education level, disease state, and seemingly endless number of issues that separated Jane’s life from my own—and even though my limited experiences and the safety and naivety of my sheltered life had caused me to comprehend only on a very superficial level the extent of her pain and suffering—our hopes and dreams were exactly the same. I said a silent prayer that God might grant her this request and put an end to her sorrow.
When I had ended the conversation, I stood up to leave the room. I promised to be back with my preceptor to do a physical exam and thanked her for her time and her openness. I put my hand on the door knob and she answered, “Honey, I want to thank you, too. It’s been a long time since I spoke these words out loud. I ain’t had someone to tell this to in a long time. I been holdin’ it all in and it helps to have someone listen.”
As I closed the door, I said a second prayer: a thank you to God for the opportunity to meet Jane, who had proven herself an unparalleled teacher. I knew now that a good nurse must always listen with an open heart and an open mind. She had taught me that in order to care for a patient, one may need to gather the courage to reach across a great social schism to feel the pain and suffering of another human being. But most importantly, she had shown me that the things that bind us are stronger than those that divide.
Anne Marie Kearing graduated from Villanova University in 2011 with a degree in biology before coming to Yale as a GEPN. She is currently studying to be a Family Nurse Practitioner and hopes to graduate in 2014.
The snow is falling here and a chill has encapsulated my body. It is during these times that I conjure up memories of warmer days—of sand in my toes, freshly cut lawns, and dribbling ice cream cones—and I am reminded of the last time I saw you. I was driving back to the office with the radio blaring, my moon roof open, the sun scorching my leather seats, and your hospital bed getting smaller and smaller in my rear view mirror. Another visit was complete. I came to your house, I read your morphine levels, I stroked your straw-like hair, I petted your dog, and I held your tiny hand. But in an unintentional way, I held my breath, too. I prayed that you wouldn’t scream, that you wouldn’t fuss and that you wouldn’t die. At least, not while I was there. Could you sense my fear? Hear my silent prayers.
The last time I saw you, your emaciated legs and your cracked lips were upon that bed and your sunken deep blue eyes gave the only color to your skeleton. Your glances told me that you could hear me, that you could understand. Your vision was compromised by the tumor that would eventually strangulate the life out of you. But you could feel. And you would reach for my hand. You would give me “five”, turn it around, touch the lines and trace my fingers. You would play with my faux-wooden bracelet. And grab your toys—the plush Mickey Mouse, the cotton-candy textured hair of the trolls, and the plastic stress ball. You would grunt for your mother but real words were mostly beyond you at this point. I sat dutifully at your bedside and wondered what you were thinking. Wondered what was happening in your body. Sure, I could look up the physiologic processes and graph them and make trends of them, but I didn’t know what you were experiencing.
I remember seeing the book “When I Leave This Place” next to your bed. Did you want people to read that to you? To tell you how you were going to hop on a star or become an angel or did you want to hear that you were destined to just rot unceremoniously in the ground? Did you learn the great secret that no one has come back to tell us? Or did you hear the story and cry inside? Cry for all that you were losing—your mother, father, sister, brothers, friends, your future—or were you content? The only time that I was confident that I knew what you were experiencing was when you yelled out in agony. Your cries to “not hurt my head” were ear piercing and soul crushing. My hands worked nimbly to patch up the oozing, purulent abscess behind your ear, but the fibrous gauze and crusting edge of your wound snagged my mission. My feeble attempts at care and healing resulted in pain that no number of morphine pushes could take away. When I saw your long, raw spaghetti-like fingers reach to your head as a tear coursed down your cheek, I knew that you were still living. Your hours of sleep, lack of color, and utterly wasted appearance did not dissuade me in those moments of your humanity. I was relieved by your emotion. I needed to see that you were still there—that you weren’t a piece of flesh, left to decompose in the middle of a living room in the heat of the summer. I did not doubt the love of your family, but I wondered about their stamina. Your long illness, your steady state of being on the edge of life and death took a toll on them. You could hear it in your sister’s voice as she protested another afternoon at home. It wasn’t that they resented you. It was the illness that they hated. They wanted their little brother back and if they couldn’t have that, they wanted to purge themselves of you. The goodbyes had been said, the casket picked out. We were just waiting on you.
But you persisted. You couldn’t quite let go. I wondered what you were waiting for. 52 days of not eating. Over 60 without getting out of bed. Were you waiting for a Red Sox victory? Was someone going to help you to the “other side”? I needed to know. You see, I’m going to do this for a living—I need to know what is happening so that I can feel at ease and help those poor kids struggling with what you went through. I have so many questions for you, C. I’m not done learning from you. I’m not done asking you questions. What’s it like? Are you on that star? Are you watching down on your family? Do you ever glance my way? Isn’t it funny how after all of these months it’s still me I’m worried about. Perhaps I should just tell you what I’ve thought so many times, but never really got up the nerve to meaningfully articulate. Thank you. Thank you for forcing me to look at myself, to see my selfishness, to see my insecurities, to recognize my generosity, to admit to my compassion and to my strength, to ask the questions that aren’t polite, and to pride myself on coming to terms with all of these emotions. Some of this may seem egocentric, or reflective, depending on your point of view. But they are me. They are who I am, and they represent the nurse that I will one day become. So, C, thank you for letting me feel.
a, your visiting nurse student
Allison Grady, MSN, PNP-BC, APNP, RN, is a pediatric oncology nurse practitioner at Children’s Hospital of Wisconsin in Milwaukee, WI. She is a 2011 graduate of Yale School of Nursing where she specialized in pediatrics.
It was all a mess. I didn’t know what had happened. Somewhere between promising forever and now, it had all fell apart. As I drove in my car to work, I cried for the thousandth time. I was six months pregnant and my husband had decided that he didn’t want to be married any more. Each time I packed my bags and found the courage to leave, at the door I would find some reason to stay; some excuse, some doubt, some hope that things would be exactly as I planned. And then, I would find myself crying in my car with my brain telling my heart the truth.
My heartache was so raw and so deep I had thought several times about quitting my job as a nurse. Night after night, working in the intensive care unit I thought my heart would burst. How can people trust me to take care of their loved ones? I couldn’t even keep my family together; and here I was in the business of trust. People would leave their loved ones with me, their nurse, and expect that I would keep everything together, that when they came back in the morning or the next day, that everything would be as it should. My hands were the ones they expected to heal their families, when my family was broken and falling apart.
I walked on the floor taking a deep breath and putting on the usual mask. “Are you ok?” people would ask. “Yes, yes, I’m fine…just the hormones” I would answer with a weak smile. Their concern would be there in their eyes but it would fade because they wanted to go home to their families and they would begin giving me report.
Tonight was a special night. I was caring for a patient who was a live organ donor. His story was sad, as with most patients who end up being live organ donors. The patient was a prescription drug abuser who had an alcohol addiction, but a family who loved him and protected him. If he were high, they would care for him so he was safe; if he went to get drunk, they would search the bars until they found him and brought him home. Between his wife and his daughters, they had managed to orchestrate their love for him despite his addictions. Ironically, he fell asleep in his lounge chair while watching a movie with his daughter and he silently cardiac arrested. By the time the daughter realized he was really unconscious, he already had irreversible anoxic brain injury. He was my only patient that night.
The first time I walked into the room I was amazed. His wife sat faithfully at his bedside and their youngest daughter, the one who had been present at his arrest, sat on the other with a pile of paper in her lap, intently focused on folding origami birds. There were already hundreds of little origami birds present in the room on the bed and the tables. They were beautiful. I introduced myself to the wife and the daughter and then carefully picked up one of the birds. I gently questioned the daughter. She looked up with pain and loss clearly present in her eyes and told me that there is a Japanese legend that states that the person who folds a thousand origami birds may be granted one wish. I didn’t need her to elaborate as to what that wish was. As I looked at her father lying still in the bed, I knew what she would wish for. The ventilator pumped breaths rhythmically and the I.V. pumps sang their repetitive song, and right then and there I realized that all of us in that room had the same wish: that our families had been perfect and exactly how we had wanted them to be.
I worked more passionately then I had in months. The baby in my belly rolled and kicked throughout the whole night. I felt as if I were alive and awake for the first time in a long time. I loved his family and spent the entire night in their room. They recalled the good times and the bad times. We laughed and we cried together that night in the intensive care unit. They shared with me and I shared a small portion of my pain with them. “Sometimes no matter how hard you try, things will never be the way you want. But there comes a time when you have to make a wish and let go…” his wife said to me. I watched as she glanced over at her daughter and then stroked her husband’s hand.
In the morning, I brought the patient and his family to the OR for the organ recovery. I watched his family say a tearful goodbye to him as he went into the operating room with a thousand origami birds covering him. As I turned to leave the wife touched my shoulder. She hugged me and thanked me. And then in my hand she placed one of the tiny origami birds, she patted my belly and walked away.
That morning when I drove home I stared at my hands at a stoplight. These hands were not devoid of healing and love. I had cared and loved a patient and their family through one of the toughest times of their lives. These hands would carry me through, and there were thousands of patients who needed my healing touch, and most importantly, one tiny baby. I had learned so much from this family. As I looked over at the origami bird on the passenger seat I smiled, for me, it was time to make a wish.
Kassandra August-Marcucio, RN, APRN started her nursing career at Quinnipiac University where she received her bachelor’s degree in 2007. During her time there, she fell in love with acute care nursing and with the encouragement of her boss and nursing professors, decided to apply to Yale University’s Acute Care Nurse Practitioner program. She graduated from Yale University in May of 2012. While attending Yale, Kassandra faced some of the toughest challenges in her life; she became a single mother, struggled to balance work and school and even came close to giving up on her nursing career. But through the tough times and tears, she was reminded time and time again when caring for her patient’s that there was hope. Kassandra is now happily employed as a Urology Nurse Practitioner at the West Haven CT Veteran’s Affairs Hospital. She has also given love a second chance and got remarried last July. Her, her husband, and her son are anxiously awaiting the birth of their baby girl in October. Kassandra is looking forward to a long life full of happiness, healing and nursing.
A Strange Kind of Birth
Up until the time I started to smell burning tissue, like the smell at the dentist when they’re drilling on a tooth, my observation in the operating room resembled a program on the Discovery Channel. For the last two hours, I had been watching a laparoscopic hysterectomy on a video screen above the surgeon. The surgeon wasn’t touching the patient; he was operating the controls of the Da Vinci – a multi-armed robot that was doing the dirty work. The patient, a 46-year old woman, had been unresponsive to various treatments for her fibroids and was now having her uterus removed.
Three short months had passed since I attended my last birth as a doula in cool, temperate, San Francisco. There, I met with clients, explored their feelings and offered validation, my vocabulary peppered with words like energy, chakras and breath. I came to mothers in the middle of the night, embraced them, whispered words of encouragement in their ears as they moaned their way through contractions. Now, as a student nurse, in hot, humid New Haven, I studied scientific fact and lab values, and communicated in the language of anatomy, disease and interventions. Any attempt at intimacy was hampered by the sheer terror of not knowing what the hell I was doing. I was amazed by how recently I traded in the raw, messy warmth of labor and delivery to the precise, chilly sterility of the operating room.
Prior to surgery, the surgical team spent two hours prepping, an activity that I hoped would be educational, but left me feeling awkward and misplaced — dodging cords, equipment and staff, trying not to touch anything sterile, attempting to be helpful, but failing at everything. At some point, I did strike up a hushed conversation with one of the nurses. We were discussing my former college when she asked, “That’s a pretty left school, isn’t it? Do you feel that it prepared you for grad school?” My mind began to race. What did she mean, “left” school? Left like West Coast? Or left like liberal? Either way, I resisted the urge to point to my ID badge. “Yes, my small, West Coast, ambivalent on shoes, but very much pro-ultimate frisbee, liberal arts college got me accepted into Yale,” I wanted to say. Instead, I gave some canned response about how a liberal arts education prepares you for a variety of experiences after college. Does it, though? I wondered. Does it prepare you to stand in a room with a patient you’ve never met and look at her most intimate parts inside and out? Does it prepare you for this?
My thoughts were interrupted by the surgeon announcing that he was done. All that remained was to slice the uterus into smaller pieces and then pull the uterus and the cervix through the vagina. What had previously been an intellectual experience suddenly became a visceral one, my own uterus cramping the way it does at a birth when a mother begins to push. After three hours of watching, waiting, holding space, the time had come: I held my breath as the surgeon made two or three longitudinal cuts, turning the uterus into some sort of soft-bodied sea creature. Then, he instructed the resident to pull.
“Slowly,” he said, “You don’t want it to tear.”
I watched on the video as the uterus made its exit, the cut pieces overlapping, just as a baby’s skull bones fold over one another to ease its passage down the birth canal. At some point, the resident had to start over and the uterus tried to reclaim its former home, the way a baby slides back into its mother between pushes. Pull, pull. Hand over hand. Keep pulling. And then it was out.
“Did you get it?” the surgeon asked.
“I did!” the resident exclaimed.
The focus in the room then shifted to the uterus, the prize in all of this. The surgeon joined the residents in examining the pale, lifeless piece of flesh. “Look at how big it is!” they cooed. Reflexively, I turned my attention to the patient, half expecting to make eye contact, to place a hand on her and send her unspoken words of love, gratitude and affirmation. As I looked over, I remembered that she was asleep — bundled in pads and sterile sheets, cords hanging off and out of her. The ten feet between us may as well have been a continent. I thought about how she would feel when she woke up — tired, sore, happy to be done and glad it went well. My eyes shifted from the patient to the video screen, to the image of the space that once contained her womb — the space that was once so full, now empty.
Audrey Muto will graduate from YSN’s nurse-midwifery program in 2014. After completing her undergraduate degree in Biology, with a minor in Japanese, at Lewis & Clark College in Portland, Oregon, she spent two years teaching English to elementary and junior high school students on a rural island in Japan through the JET (Japan Exchange and Teaching) Programme. Prior to her acceptance at Yale, she worked as a doula, childbirth educator and prenatal yoga instructor near her hometown in the San Francisco Bay Area, California. In addition to her studies, she continues to teach yoga and prenatal yoga here in New Haven.
Melvin began as a knot in my stomach. A knot that had twisted itself into a tangled mess as I drove to clinical that Saturday morning. Twelve hours, I thought. Twelve hours caring for a blind and almost completely deaf “combative ex-marine” with notes that described him as “difficult”, “sour”, and at times “violent”; he was condemned in my mind before I even reached the highway. I must preface what I share with you next by saying that never in my life have I truly been able to substantiate the expression, however trite and worn-out it may be, “don’t judge a book by it’s cover”, or in my case, “don’t judge a man by his medical chart”, until the day I met Melvin.
He had kept me up most of the night, anxiously awaiting our day together; and as I walked onto the unit that morning, overwhelmed by the vulgarities that echoed from a distant room, I knew that he too, must have had a long night. Receiving report from a nurse delighted to be relieved of Melvin duty, I was reminded once again, that he could be quite difficult. And so I entered his room, bracing myself for the verbal abuse, and perhaps a flying bedpan; but instead had to catch my breath at what lay before me. Those angry screams could not possibly have from this man. For this man was nothing more than an empty shell; the remnants of what once was, but had since been lost, shriveled by time, emaciated by disease, defeated by a cancer that had stolen all but his last breath. His eyes open wide showed no sign of recognition, the milky white glaze from years of cataracts staring off into nothingness. “Hello Mr. S” I stammer, but he does not hear. “Mr. S my name is Taylor” I speak louder, leaning in by his side, and still nothing.
By the fourth try I am yelling my name but two inches from his “good ear”, too flustered to remember that I am supposed to be nervous, and this time, he hears me. “I told you stupid nurses to leave me alone, damnit!” he shouts. Breathing deeply to stifle the flare of my own quick temper, I try again. “Mr. S, my name is Taylor, I am a student nurse, we’ve never met before. I’m sorry that you are upset, but I’m here now and I plan to take good care of, ok? ”. I know he has heard me, I can tell by the way his head tilts, slightly forward with a furrowed brow. I watch his chest sink as he sighs. “Oh”, and I can hear the sorry in his voice, “I thought you was someone else”. “It’s just you and me today Melvin. So we have to be good to each other, okay?” He laughs, allowing a smile to escape his lips. “Oh you’re a sassy one, huh?” He laughs again. “Ok ma’am, you be good to me, and I’ll be good to you”.
We get through breakfast and a bath fairly unscathed. Melvin calls me ma’am, and I do my best to keep him laughing as I shout my way past years of mistrust and resentment. Having been pegged as violent and uncooperative, Melvin has received minimal attention, and it shows; taped into underwear two sizes too big, his gown and linens are soiled with blood spots and urine. And so I work, from head to toe, to set things straight. I use my hands to soothe his body, as he shares words to heal his soul. As he speaks, I can see that Melvin is not angry, he is frightened. Frightened of the nurses who poke and prod without taking the time to explain things first. Frightened of the endless needles, endless pain, and mostly, frightened to die here, in this bed, alone. I cannot mend all that has been broken in this man, but I can give him something he has been denied of for some time. I can give him kindness, and warmth, I can give him patience and time; I can give him all that I have in me today, in hopes that it may help carry him through tomorrow.
Melvin is reliving his time in the marines as I apply lotion to his feet; when the oncologist walks in. “Hello Mr. S”, he says quietly. “He can’t hear you” I say, “you’ve got to lean into his right ear and shout”. He looks at me for a moment before repeating himself, slightly louder, though he makes no attempt to move. This goes on for a minute or so before I go to Melvin’s side to announce his visitor. “Hello Doc”, he chirps. I smile at this small triumph and move back to his feet. The doctor looks uncomfortable, but this time he leans in, doing his best to raise his voice, and tells Melvin the prostate cancer he conquered 16 years ago has returned, and has spread to his bones. Just like that. They will need to run more tests before discussing a treatment plan. He is leaving his card for Melvin to call with questions, as if that is even possible. There is no gentle touch, no offering of someone to talk to, not even so much as a quick squeeze of the hand. He is in and out before I have a chance to process what has happened. We sit in silence for some time until Melvin says “Those docs, they always make it seem like it’s your fault”. I put his socks back on and continue rubbing his feet, not knowing what else to do, “Melvin”, I say, “this is not your fault, I am so sorry”. “I’m starving, where’s my damn sandwich?” is all he replies.
When his nurse rushes in just as lunch has arrived, shouting that she will be placing a new IV line for yet another round of antibiotics; it is no surprise to me that she is met with the hostile man she has come to know. After several tries, she is unable to find a vein in his decrepit arm; having been ridden with so many needles, it is covered in bruises. I watch the frustration mount on her face, listening as she shouts for him to hold still, and I can see that Melvin has had enough. He screams at her to leave him alone, to stop sticking him, to please just let him die in peace. I move to stand by his side, feeling helpless, I offer my hand. To my surprise he accepts, pulling me close to his face, pressing my palm firmly against his cheek, he doesn’t let go. After a moment, I ask if it would be okay for the nurse to try one more time. I see by the way his shoulders slump that the fight is gone and he nods. I offer him the piece of cake from the lunch he has yet to eat, feeding it to him as she fishes around on the other side. “Thank you ma’am”, he says, “this is delicious”.
We don’t have a perfect day, Melvin and I. At 87 years old, his memory is not what it once was, and he is quick to lose his temper. He tells me that I should have been a doctor, that nursing is a waste of time; and frequently exclaims that my hands are too damn cold. But Melvin is also kind. He recovers quickly when angry, and thanks me for the smallest of favors. He talks for many hours, about his time in the marines, his two ex wives, and the many regrets that haunt him as he faces the end of his life. When the grief becomes too much to bare, when he can no longer put his sadness into words, and instead lashes out in anger, I offer my hand so that he is not alone. And I hope that he knows, as I give a good squeeze, willing my thoughts to the tips of my fingers, that I care. That he is kind, and good, and deserves to be at peace; and that most importantly, his memory will not be forgotten. Melvin will be here, to remind me should I ever forget, that there is beauty in the resiliency of the human spirit; and that sometimes all we need to get us through, is that one willing hand to guide the way.
Alma is refusing debridement. She’s refusing hospice care. She thinks hospice is akin to suicide. Yesterday the chaplain told her that’s not the case, in God’s eyes. I don’t know what she thinks about that. Maybe she doesn’t trust him like she doesn’t trust the doctors. They tried to explain to her that all they can offer – debridement of her wounds in the OR, dialysis, blood transfusions – won’t really make a difference. But she takes this to mean they’ve given up on her, that they don’t want to help her. Whatever she believes, whatever treatment she accepts or refuses, she has a few months, maybe. She doesn’t eat anymore.
Last night she didn’t look like she had a few months. Her face was pale, green even, her skin paper-thin, dull. I checked on her all night long, peeking in on her, holding my own breath until I saw hers, the uneven rise and fall of her chest. Like checking on a new baby. I parked myself and my computer outside of her door so I could hear her every sigh, every “Dios mio” and “No puedo.”
“Alma,” I would say, “what’s the matter?” She would close her eyes, her brow furrowed and frowning, shrug her plump shoulders, slowly shaking her head back and forth. “Alma, are you in pain?”
Sometimes she would say yes, and I would gratefully give her dilaudid. Most of the time she would say, “No, not so much.”
“Then what’s wrong, Alma?”
I feel panic, because I don’t have anything to give for fear. I don’t know what to do. I want to hold her hand. I touch her, trying to convey what I can’t say. My presence will be something, maybe. She doesn’t respond to my touch. Or when she does, she recoils in pain.
Because she hurts everywhere. I reposition her on the bed, try to make her more comfortable. When we boost her she screams. (The nurse who helps me whispers outside the room, “She smells like death.” Bullshit. I’ve been caring for Alma for months; I know her smell. She smells the same. And death doesn’t have a smell. I think.) I move the remote control to get to her IV to start the blood transfusion, I lay the remote on her thigh, she yelps in pain. She shows me her breast, says, “What is this?” I’ve never seen the beginning stages of calciphylaxis – only the end, the gaping wounds, bone exposed, all raw flesh and pus. I go look at photos on Up-to-Date and, yes, it’s a new area of calciphylaxis. I add it to her skin assessment. She now has twelve documented wounds. These wounds, all over her body – this is what she will die from. This new one hurts just a little now.
The night takes on a rhythm. “Dios mio.” Dilaudid. Blood pressure 79/25. I try a manual BP, with only her right forearm to use, but I hear nothing. Since it’s in hand, lest it be totally useless, I apply the stethoscope to her chest and hear rhonchi. This is new. Zosyn for three hours. BP 135/45. “No puedo.” Boost, cry of pain. BP 85/32. Hang the next unit of blood. “Ay ay ay.” Dilaudid. Sleep, but fitful. 12 breaths per minute. Or 10?
“Alma, what’s wrong?”
“I’m right here Alma, you’re safe.” (Such weak words, and untrue; I’m embarrassed to repeat them now. And presumptuous, to think that my presence would bring comfort!)
BP 155/82. That can’t be right. 79/32. That’s more like it. She awakens, vomiting, Zofran, a wet cloth to her face. Zosyn again, three hours. It’s dawn. She’s moaning. “Alma, what is it?” She just shakes her head.
“Alma, let me help you. What can I do?” The shrug. I pat her arm – pat her arm! – the only part of her I’m confident I won’t hurt. She winces. “I’m sorry, Alma.”
All night I look at her, every bit of her. I still remember. Her fingernails are red, less the one we frantically cleaned with acetone the other day when we couldn’t get an oxygen sat reading higher than 62%. We finally got it on her big toe, right foot. She doesn’t have any toes on her left foot. Her right toenails are also painted red. Her hair has been dyed. I stand there, looking at the root growth, trying to gauge when it was last dyed. A couple inches. It had to have been prior to this most recent admission. She dyes her hair. She paints her nails. What is she like? Was she once proud? Feisty? Throwing her hips around? Or has she always been like this, soft and resigned? I’ve been wishing she would fight for months, but now I see it wouldn’t have mattered.
This is the end of life. It’s not beautiful. It’s not romantic. It’s not peaceful. This is not what we want for her. We want her to have some solace, some comfort, some rest. But this is not altruism that we feel. We don’t want these things for her alone; it’s for us, too. This is painful to witness. Because don’t have tools for this. Sure, we have dilaudid, we have Zofran. We can hang the quilt above her door, give her some small comfort, stop taking vital signs – even the blood pressure cuff hurts her! We can speak in hushed tones, bring her family coffee (if only there were family here), rub shoulders in sympathy, call the chaplain at just the right time. These things we know how to do. But we are not competent in suffering. The doctors want to fix this; they can’t. The nurses want to comfort; we can’t. There are places beyond comfort. All we can do is witness. All night long, night after long night.
Emily Zeno Yeast graduates this summer from Yale’s nurse-midwifery program. In her prior career she worked with addicted, mentally ill, and incarcerated pregnant and parenting mothers where she observed that childbirth can be a powerful and transformative experience for a woman if she is afforded the opportunity to be an active participant in her own health care; it was this observation that drew her to midwifery. While at Yale she began working as a nurse on an inpatient nephrology unit and was surprised and delighted to discover that she also has a deep love for the profession of nursing.