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Expressions Creative Works from the Members of HPNA

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The Quilt of Caring By Donna Taranto Palliative Care is a treasured quilt Encircling body, mind & soul It blankets the patient completely To achieve patient & family goals Doctors appliqué their expertise When serious illness starts Social workers piece solutions To questions with many parts Pain & Symptom Management Border a patients’ stay Add Pharmacy’s touch inside each stitch For relief that doesn’t fray The Nutritionist feeds the patient Like the sewing machine needs its thread Community Quilters and Spa 85 Are some ways the needle is fed Pastoral Care’s Care faithful backing Warms the body and the soul Nursing provides the strongest thread Piecing care in ways untold Physical Therapists offer movement Like fabrics to give it drape Hospice & Nursing Home specialists Added within to give it shape Homecare embellishes the quilt top ‘Cause there’s no place quite like home Care Management creates a template So no patient will suffer alone A quilt of caring & humanity Using specialists of many forms It encircles each patient it touches Providing holistic healing that warms.

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Palliative Care By Donna Taranto A piece of yourselves You give to each There’s no one too sick Or out of your reach You give up your heart Sometimes your soul It’s never enough When healings’ your goal If healing the patient Cannot be done You prepare a soul For its flight to the sun With caring hands And a sincere smile You take pain away With dignity and style A parting haircut One last favorite drink Or a last look at nature You don’t even blink You gather their family For one last kiss A final sweet memory One last wish When the butterfly takes off And flies to the sky The family is cared for To help say goodbye Palliative Care Services Like the sweetest dove With comfort and caring It surrounds all with love.

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A Heart With Warm Hugs When I grow up, that is ultimately what I want to be, A Heart with warm hugs. As a youth I wanted to wipe out all suffering in the world. To bring joy and laughter to each man, woman, boy and girl. I went to college and got my nursing degree; cause I desire to be, a heart with warm hugs. A heart with warm hugs expresses compassion, oneness, no barrier. It brings a moment of peace, warmth, healing, smiles, positive energy, oh sweet love. A heart with warm hugs, reinforces and strengthens the chain of unity, peace, understanding, good energy around the world. That is why I entered nursing; to touch, to heal, pour the energy of love into each hurting body, heart and mind. I admired the way people of different cultures, race and religions appreciated the compassion, respect and touch of love that my mother shared with all her patients. Then the ultimate place that others thought I am crazy to want to be, Is in hospice which found me. Where my heart with warm hugs extends to those in most need of the energy of love, moments of feeling at peace, oneness with all life energy. To further be able to extend my heart with warm hugs to their family and friends. To let them feel this is from no pretense. The spectacular thing is how good it also makes me feel, And guess what, It's FREE! Andrea Smith-Blackwood RN, BSN Hospice of New York 516 444 6023

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Angel The 40 year old hospice patient, Mr. M, sits in a reclining wheelchair listening to the TV. Alone in his nursing home room he can only hold his head up for a short period of time to see the picture on the screen, the rest of his body is paralyzed, except for a slight movement of his arms. Unable to speak, he lives inside his brain with thoughts to be heard by only God or himself. His mind is fully lucid. He communicates with other people by moving his head for “yes” and “no” answers. There is never a smile on his face or laughter in his expression. He has been in hospice for several months. He stares for hours at the ceiling and the floor in his room listening to the TV, or the people talking in the hall. This is his life. The hospice aide, Christine, arrives to feed him lunch. The highlight of his day comes from the pleasure of tasting food, the gratification of filling an empty stomach. She not only feeds him, she brings a connection to another person as she talks to him with kindness. Each spoonful of blended pureed food she carefully places in his mouth. With difficulty swallowing, he moves his chin to his chest and then his head sways backwards; this to insure the food goes down the right opening. He does this repeatedly with each bite. Too many times the food has gone into his lungs; his ability to swallow is dying like the rest of his body. He has made the decision to let himself die when it goes into his lungs the next time, and not to return to the hospital or receive antibiotics for the treatment of aspiration pneumonia. His longevity is at risk with each spoonful of nourishment, so she takes the time to feed him slowly. Christine tells him stories while she feeds him, stories of the Redskin football team, the programs on TV, and any of his favorite topics. It takes a special person to carry on a conversation with someone who cannot speak back. She comes to him with so much compassion in her heart. Page | 5


When the feeding is done she asks him, “Would you like to go outside Mr. M?” His head slowly moves up and down to answer “Yes.” Christine’s only responsibility is to feed him. She has many other people to care for on this day, but she chooses giving him joy as her number one priority, since his days in this world are limited. She wheels him outside, sacrificing her own break time. She is expressing the giving of love, like a mother would do for a son, and adding this human component to her hospice work. She pushes his wheelchair to the elevator and out the front door. He inhales the freshness of nature. It is exhilarating compared to the enclosed air of the nursing home, with its occasional odor of feces and urine. His eyes fill with delight at the sight of the green grass, the squirrels running about, the summer leaves on the trees, and the warmth of the sun on his face. Christine is like an angel sent to him, as she continues to talk about the sound of the cicadas and other things in nature. This simple 20 minute walk, which a healthy person would take for granted, is like a child going to a playground for this paralyzed man who reclines in his wheelchair or lies in his bed 24 hours a day. They return to his room with the TV playing an episode of the comedy “Home Improvement”. An extremely funny scene occurs that makes Christine laugh out loud. Her robust laughter penetrates Mr. M so strongly, and to her surprise, a gesture of laughter comes from his deteriorating throat. For the first time in the eight months she has been caring for him, she watches him express happiness. Tears form in her eye, for Christine feels, she has just received the best reward in her entire career as a hospice home health aide.

Written by SUSAN RANDALL, RN (as told to her by a hospice home health aide)

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Then and Now ( a confession ) Ingrid Y. Cresencio My father is my inspiration in pursuing this career. His passing has been painful for me who witnessed all his sufferings. Wished I knew about Palliative Care and Hospice then-- but even so, our Philippine Care System does not practice this delivery of care, though the value of patient dying in dignity and comfort has always been our priority, yet, a struggle for lack of knowledge and possibly resources. He passed without any ACP, we are left in the turmoil of going through the battle to keep him with usor to let go for he is in great discomfort...it was hard. Finally when my mother decided for a DNR decision, I was hesitant. I thought I've failed him, me being a new graduate nurse by then. He passed with all his loved ones on his side, but i couldn't forget the last hour; he died grimacing in agony. Hospice opened my eyes to the great reality beyond what i could pathom. My feeling of guilt gone but only frustration that i could not afford him comfort from pain then. Thus, I wish to share this expertise someday to other devoted families like my own, to the many sincere and loving caregivers like myself---- That dying should never be a painful process, yet, a beginning of new life without suffering. I wish to pass on the gifts---to reminisce, to gratify, to let go... for everyone to make most of their time feeling these words... "Thank you" "I'm sorry" "Goodbye"

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Nourished Spirit After a long holiday weekend combined with me being out sick for a few days, it was time to return to the home of my terminally ill patient, Mr. Joey. It had been seven days since I last visited. This pillar of his family was sad a week ago, showing me a side his family didn’t see. He felt safe enough to cry in my presence when we sat alone on his sofa that day. The closeness between us grew so strongly, like an invisible film of superglue bonding our souls. I felt honored to receive his trust. The report from the other nurses who visited in my absence was that his illness was progressing rapidly; daily nursing visits were needed. The maid lets me in through the front door. Mrs. Joey stands at the top of a plush stairway; she speaks to me over the railing, “Are you okay, Sue?” She is concerned about my health since I was out for a few days, but I don’t like our clients worrying about me. “Yes, I’m fine. Is Mr. Joey up there?” I walk up the soft carpeted stairs to stand beside her. She tells me her husband hasn’t even gotten out of bed yet, hasn’t eaten anything, and hasn’t taken his pills; it is already mid-afternoon. Her fingers are pressed hard to her cheeks, eyes look up to the ceiling; the worry hangs in the air like a dark cloud filling the room. We walk together into their bedroom to the sound of loud gurgling. Mr. Joey’s mouth is open wide, his skin pale with brief periods of no breathing. He is lying in a queen sized bed and there is no bedside commode. I think, good grief, why didn’t the other nurses order the proper equipment for here? I wonder how he will walk to the bathroom. He looks close to dying, drops of perspiration rest on his forehead. A hospital bed, at least, would make him more comfortable, he could elevate the head of the bed for all that gurgling. When I touch his arm, eyes open gradually, he is running a fever. He asks for help to walk to the bathroom. I hand him the walker when he stands, toothpick legs wobble with each step. I wrap my hands around his bony arms to support him; he is so light from all the weight loss. Luckily he makes it back to the bed and sits on the edge in a white tee shirt and crinkly pajama bottoms. I kneel in front of him for our serious conversation about bringing in a hospital Page | 8


bed, preparing for this next stage. Mrs. Joey sits on the bed beside him with her arm over his shoulder. I tell them both that the time has come; he will be bedridden soon. Mr. Joey looks down at his swollen feet resting on the floor. There is a very long silence. Mrs. Joey hands him a tissue to wipe his tears and to blow his nose. His lips quiver in the way of a person in distress, trying to say words that are coming from deep in his heart. When he speaks, it is faint and slow, “I know it is time, Sue, but I was waiting for you to come back.” There is another long period of silence before he continues. “You have a calming quality and now I’m ready for the bed.” There is a stirring inside me too great to put into words, a sensation that makes me cry too. This connection between us is the sorrow, as well as the joy, of working in hospice. Human chemistry cannot be bottled into a hospice training class; it is unexpected, free flowing. I could feel his pain, but I could also feel his precious love. This is how it is with some patients. The monetary compensation for my job is important to function in this world; it feeds the body. But patients like Mr. Joey feed something much more important, he nourished my spirit.

- Susan Randall, RN

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Love Letters As members of a hospice team, we have daily opportunities to participate in the love stories of our patients. Sometimes we step into a patient’s existing love story. The patient and family share their life history, framing their present with their past. We walk the intimate path with the patient and family toward their future and final destination. Other times we have patients who do not have family members present or able to share, create or maintain a love story. It is for these patients that our actions and interactions become the love story. The love letters we write are in our clinical notes. Notes filled with documentation including: “Smiles at this writer, and nods head ‘yes’ when asked if he remembers me.... Able to squeeze writer’s hand and shaking. Given PRN Lorazepam...for signs and symptoms of anxiety. Soft music also initiated to help with anxiety.” And further, “per protocol routine checks/cares/repositioned completed the NOC shift, gentle body massage with lotion, peri/cath cares completed, applied skin barrier...assisted RN with dressing change, pt has been shaved, nail cares completed, face/hands/ears washed, oral cares completed, lip balm applied, bedding and gown changed....” With each and every action we have the opportunity to create the love story every patient deserves at the end of life. Each of our clinical notes is a love letter reflecting our love story with the patient. The final letter might read, “Social worker received a request for volunteer vigil for patient from RN. Worker contacted vigil volunteers and coordinated vigil for this day from 12:30PM – 11:30PM.” Concluding with, “Pt died peacefully with vigil volunteer bedside.” The next time you read a colleague’s note stop for a minute and admire the love letter they have written.

Katie Osburn, LMSW Good Samaritan Home Health and Hospice Prescott, AZ

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My friend; My My love. I lost my friend last night; He left while I watched him sleep. I loved him and I told him so; He loved me and I let him go. I lost my friend last night; He left while I watched him sleep.

Kathleen K Curran, CRNP

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Connections For the time we have…minutes, hours or days, Let’s hold onto the feelings and memories and hope. The time that we have is for sharing, not wasting. For the time that we have, have, let’s love, laugh and cry, A touch, a sigh, a smile filled with the joy of connections. The time we have is for me, and you, and ours. For the time we have is threaded from past to present to future, Not isolated in pain or grief or the fear of a moment, moment, But a series of connections from you, to me, to them, to God. All the time we are given comes out of the time others had, And will become the beginning of time for someone else. The time that we have is for celebrating connections. For the time we have ….minutes, hours or days, Let’s hold onto the feelings, memories and hope. The time we have is for sharing, not wasting.

Pat Poticny BSN, RN Wife, mother, daughter, grandmother, granddaughter, sister

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An Essay Playing Charon

Author: Katherine Mead, RN Even though it was a Friday night, I still picked up the shift. The scheduling coordinator from the home health company I worked at had already called me twice about this new client who desperately needed a caregiver. As a nursing student, I needed the money more than I needed a free Friday night, so I agreed to take the shift. When I pulled up to the client's home, I couldn't find a place to park. There was a buzz of activity. A van blocked the path to the entrance while an older woman carried cardboard boxes into the house. Inside, a young man and an employee from my company flitted around the dingy home. After I made my presence known, my fellow employee, Ashley, made introductions. "This is Tom, Mr. E's grandson from out of town. And this is Sherri, the hospice nurse." Hospice? The scheduling coordinator didn't say anything about this client being on hospice when I took the case. Being a relatively new nursing student and home health aide, I didn't have any experience with hospice. I started to worry. Ashley led me to the bedroom to meet the client, Mr. E. And there laid my first hospice patient. I was shocked by what I saw. He was emaciated, just skin and bones. His eyes were closed, his face stubbly and clenched in pain, and an uncleanly odor lingered in the air. While I was verbally assenting I would be able to care for the man, I'm sure my face betrayed my lack of confidence. We stepped back into the living room. The hospice nurse gave us some final instructions before leaving. The grandson went back to the kitchen to finish some paperwork. Ashley gave me the background of Mr. E. His wife had died in the last year and after that he became a recluse. His family hadn't heard anything from him for a while, so they sent someone to check on him. They found Mr. E without a crumb to eat in the house, badly soiled, and unable to speak. The grandson came immediately and set up hospice and home health. Ashley had been here for hours, caring for Mr. E and tidying up the house. Now she had to leave and it was my turn to care for the dying man. The first hour or two I continued the cleaning that Ashley had started. I checked on Mr. E frequently, but Page | 13


could hardly bear to stay in the room for more than a few minutes. I also spent my time visiting with his grandson, who really needed encouragement at this difficult time. After a while, the grandson declared he was going out to relax after the stressful day. I agreed it would be good for him, but inside I was terrified. What if this man died while I was here alone? After he left, the place became eerie. Mr. E's oxygen concentrator hummed in the background, an oversized clock ticked in the distance, and creepy shadows danced along the walls. Even though I had some free time to study, I couldn't concentrate. I kept peeking into the bedroom to make sure he was still alive. I watched his breathing. There were long periods when his chest would not rise, and then he would take a gasping gulp of air. I sighed in relief. This went on for a long time. I brought in a chair and sat next to him. I took his cool hand in mine, squeezed, and then held on firmly, letting him know I was there. As much as I wanted to believe it, this man didn't need his laundry washed, he didn't need a vacuumed floor. He needed someone to be with him, to watch over him so he didn't have to be alone with the demons I'm sure he experienced before his family found him. We often feel the need to keep busy when facing an event such as this. Cooking and cleaning seem of utmost importance. We think these are the things that need to be done, these will bring comfort both to ourselves and to others. But the only thing I needed to do that night was to sit with that man. He was facing the final journey of his life, and he needed a traveling companion.

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MY FAVORITE MARTIAN

Author: D Handy RN NANO,NANO AS MARTIAN’S USED TO SAY. GREETINGS TO ALL WHO CAME TO VISIT, AND WELCOME THEM GARY DID. HE AND JACKIE WOULD ALWAYS MAKE THEIR COMPANY FEEL RIGHT AT HOME. WHAT A WARM AND INVITING HOME IT WAS TOO. WHAT CAN I SAY ABOUT THIS MAN EXCEPT HE WAS AWESOME! THIS IS A MAN WITH A TERMANIL ILLNESS WHO LIVED EVERDAY ‘FOCUSED’ JUST ON THAT DAY. TOMORROW WAS ANOTHER CHAPTER. HE WAS MATICULOUS ABOUT HIS CARE AS WELL. DO YOU KNOW HE MADE A COMPUTER PRINT OUT OF EXACTLY WHAT HE TOOK AND WHAT TIME IT WAS TO BE TAKEN. AND WHEN HIS MEMORY WASN’T AS GOOD… HE BOUGHT A DIGITAL PILL ORGANIZER THAT VERBALLY PROMPTED HIM TO TAKE HIS PILLS ON TIME. HE WAS THE PERFECT CLIENT FOR JACHO EXCEPT FOR THAT NASTY CIGERRTTE HABIT. BUT EVEN THAT HE MANAGED TO COMPLY WITH AFTER CONTINUED EDUCATION. I LEARNED A LOT ABOUT “THE MOMENT” FROM GARY.. …LIKE THE BREATH TAKING SEEN OF WATCHING AT LEAST 30 HUMMINGBIRDS AT ONE TIME FIGHTING FOR THE SYRUP THAT GUY DILEGENTLY MADE EVERY WEEK TO PUT INTO THE 4 FEEDERS HANGING OUTSIDE HIS WINDOW. WHAT A MAGNIFICENT SITE TO SEE HUMMINGBIRDS BACKED UP IN LINE WAITING FOR THAT OPEN SPOT! SO, WHY DID GUY THINK OF HIMSELF AS A MARTIAN?? BECAUSE HE HAD DEFIED THE ODDS OF A CHILDHOOD ILLNESS AND THEN AGAIN IN ADULT HOOD WHEN HE HAD HIS RIGHT CANCEROUS LUNG REMOVED AND THEN CAUGHT PNEUMONIA. NO ONE THOUGHT HE WOULD SURVIVE…BUT HIM! AND HE DID AND THE FUNNY THING WAS HIS PULMONOLOGIST SURVIVED ILLNESS AS WELL. THEY CALLED THEMSELVES MARTIANS AND EACH TIME THEY MET THEY WOULD SAY “NANO….NANO” “MORK AND MINDY STYLE IF YOU CAN REMEMEBER THAT FAR BACK. SO, BE IT FITTING THAT THIS GENEROUS, CARING, LOVING, AND METICULOUS GARY IS MY FAVORITE MARTIN. REST IN PEACE GARY………………

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The Love Tree

Author: D Handy RN Sherry always talked about her garden, Her little “Oasis” she called it… Well, one day on one of my nursing visits when she Was resting quietly, almost non-responsive I stepped outside to view her backyard There I saw beauty as only seen through her eyes. A quiet sitting area stirred my attention Until I saw the Grapefruit Tree With it’s beautiful melons ripe for the taking I asked Kenny if I could have one He said absolutely, take as many as you like… He then commenced to tell me a story about that particular tree… He said, that he bought that Golden Beauty Grapefruit for his wife, Sherry When they got married And that this tree was her welcome gift to his home, her new home Well, needless to say I felt the love immediately in that tree With it’s beautiful fruit. So, a few weeks later after what seemed to be a never Ending dying process, (that Sherry she was a fighter, alright) I asked myself what else has not been done to help her Through this End of Life Process: who hasn’t said Goodbye or I’ll be ok without you? And then… I remembered the Grapefruit in my refrigerator!! That night I sliced and diced that grapefruit and had my two sons’ join me in toasting to Sherry and Kenny, and the Grapefruit Tree of Love. She died peacefully 4 hours later. It was The Tree of Love she wanted me to experience. And I did whole heartedly………………….. Rest in Peace Sherry

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THE GLASS IS HALF FULL

Author D Handy RN When I was in the early part of my marriage my husband used to get frustrated with me, because of my pessimism. He would say instead of looking at the glass as half empty, make an effort to look at the glass as half full. st One day, on one of my 1 nursing visits to meet my new patient I realized she would not be with us too very long and called her son to notify him. He was saddened by this fact and he told me the last time he saw his mother she was angry that he did not bring her a candy bar and soda. He asked me if it would be alright if he brought her one now. I said of course it would be fine. He then began to tell me of his hardships this past year or so, which he and his wife had their own mortgage and escrow company that with the market turndown they have now lost. He also explained that he was in the process of losing their home as well. Charles told me that when things were going well, he brought his mother out from Tennessee to live with him. He said as things started to get worse for him so did his mother’s health. He said she used to blame herself for his misfortunes. As the sadness came over his voice I asked him, “ Charles I bet you had some good times with your mom back then, huh?” His voice sparked up and he said “oh yes, one thing my mother always used to talk about was the time I took her for a ride on the back of my Harley. We went from Chino Hills to Carlsbad and then all the way up the coastline to Malibu. She just loved the ride, one of the high points in her life she said.” I told him what a beautiful memory that was and how it brought goose bumps to my arms it was so touching. So, the next day on my visit to see his dying mother, I noticed how close she was to death. I also noticed that there was no candy bar or soda at her bedside. So, I sat down at her side and began to tell her how I had spoken with Charles and that he was on his way with a candy bar and soda for her. I could here acknowledgement in her moan. And then I began to reenact the story Charles told of the Harley ride up the coast. She further acknowledged my words. And it seemed as though calmness came over her. She passed away peacefully half and hour later. In speaking with her son later in the day, he told me how he was on the way there with that candy bar and soda, he was just too late. So, I made sure I told him that I sat at his mother’s bedside and told her that Charles was on his way with a candy bar and soda, and how I reenacted the Harley ride up the coast. I could hear his voice choke up as he thanked me. As I got off the phone, sadness came over me and then I thought what my husband would be telling me right now. He would say “Dawn don’t think about the sadness of the situation, think about how richer your life is because of it.” “Life is a journey-don’t forget to enjoy the ride”- In memory of Douglas Handy -Nov. 17th 1959-Feb 25th 2003 D Handy RNRN- Nov. 17th 2009

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Beep Author: Juli Caron, CSJ Beep! Beep! Beep! “Oh yes that is the pager and I am on call.” But it is 3:00 a.m.! I need to put my awake voice on. “Someone has died? They need/want a Chaplain?” “I will be right there,” I hear myself say. There in the room is a very peaceful appearing woman. Her daughter is at her side. Holding her hand. “Will you pray?” she asks. “Of course,” I respond. And we pray, calling on Jesus, And ending with the prayer Jesus has taught us to pray. “Our Father, who art in heaven, hallowed be your name, Thy Kingdom come, Thy will be done, etc.” We all say it, Thy will be done, but in this case do we mean it?” Another page, another death. Mary North? I think to myself, “her husband will be devastated.” I go to the floor and off the elevator comes Joe, Mary’s husband, he falls into my arms and sobs. Hand in hand we walk to Mary’s room. Joe, throws himself onto Mary’s chest and sobs And sobs. Tears run down my face. Beep! Beep! Beep! Another page. Another death. I hear sobs echoing in the room As we pray. We pray the Lord’s prayer; “Thy will be done, etc. I then go to my office to search my heart, To “have a little talk with Jesus”, Thank you Jesus for calling me to this ministry. My heart is full and broken, scarred and marred, Weeping and sad, yet full and joyful to over flowing. I meditate on the Gospel of Mary while carrying Jesus In her womb, and going to Elizabeth and; As they greeted one another, Elizabeth felt the babe in her womb leap for joy. The tender intimate moment of that greeting; Same is the intimate tender moment of being invited Into the life of someone and his/her family As one enters Eternal Life. No money, no words, nothing can compare with this Privilege. This is why I get up at 3:00 a.m. and Put on my awake voice and say “I will be right there.”

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I cared for a patient who was dying today

Author: Juli Caron, CSJ I cared for a patient who was dying today. My first time Scary at first. I wondered; how will this go? What will it be like? Will it be quiet, or will there Be a noise? It is so quiet in this room, All I can hear is Hilda’s breathing. Hilda is her name. Her breathing is shallow Her chest is barely moving. Her skin is warm to the touch. Hilda is alone in the room, I wonder where her family is. Does she have family? Not so sure I want to be in here alone. O.K. I can do this. Never cared for anyone who has died. I can do this. I pull up a chair, Take her hand, I listen to her breathing, Her breaths begin to get less and less, Is this what it is like? I ask myself. Not so scary, With one more breath, her breaths have stopped. Hilda has died. Wonder what it is like to die. So peaceful and quiet. My privilege to be here. Did Hilda see Jesus? What is she seeing now? A gift has been given to me. Thank you Hilda.

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Quality of Life????????

Author: Juli Caron, CSJ Heart wrenching What are we to do? What would she want? 17 year old; cardiac arrest. Severe Brain damage Heart wrenching What is best for her, What would she want? Does anyone know? What is right? Is there a right? Is there a wrong? Breathing on a machine On Propophol Is this a way to live? Is this quality of life? Braces on hands and feet, Tube in her throat Connected to a ventilator Tube in her bladder, Beeping going on here and there God help us know what to do, Heart wrenching Or is it nothing to do, But to wait Give us the grace to be faithful To your call within us To bring life into this Labor of love.

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There is great commotion all around

Author: Juli Caron, CSJ There is great commotion all around. Beepers are going off, Respirator alarms are buzzing, Nurses and other staff are moving as fast as they can. Me? I have a patient who is going to die In the midst of all of this chaos. Bright lights all around. Not very peaceful Families are walking in and out Doors are slamming shut Noisy and not very peaceful I have a patient who is going to die. How can I do this? I hear sobbing coming from the room I don’t know what to do How can I do this? O.K. I can do this I cannot fix it, Wish I could Respirator is going to come off? YIKES, what/how do I do that? O.K. I can do this I cannot fix it, Wish I could Respirator is removed Family is all around I encourage them to hold his hand I am present too. George stops breathing Peacefully and quiet In the midst of the chaos A sacred event has taken place Thank you for this gift.

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To: Hospice Caregiver X Author: Lara Slavtcheff This isn’t me, you know I’m sick and I tell you this isn’t me, I’m not myself I may have lived a long life or not so long I’m a Grandmother a Grandfather a Mother, a Father a Daughter, a Son a Sister, a Brother a friend, a lover a wife, a husband an Aunt, an Uncle, a cousin a Sister-n-law, a Brother-n-law I am someone, I am loved This isn’t how I used to be I want to tell you because you won’t know you who care for me now So, I ask you to look me in the eye and address me by name, hold my hand show me the respect I haven’t had time to earn from you I’m a person with a PhD who speaks 7 languages but I am mute now or mumbling incoherently I’m the gentlest soul but you wouldn’t know by the way I curse, punch, and scream My body’s decline has taken over my mind you see and I am helpless, at your mercy

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I don’t hear well or at all, I can’t eat well or at all, I can’t see well or at all, I can’t walk or get out of bed or I can only lay still The time has come where the flower of me is withering and soon to die and you have never known me in full bloom, but I was oh so beautiful! So, when you look at me I wish you to see yourself be gentle, be kind do unto me as you would want done unto you and know that I will forgive your momentary human frailty this is all I ask I hope only that you too will want compassion, gentleness, love and respect when you lay withering and dying among strangers, for make no mistake someday you may be me looking at you from a bed just like mine Please, honor me now in my time of dying like you would be joyous for me if you were at my birth Are birth and death not both equally momentous and profoundly awesome? If you do this I will send you a thousand thank you(s) from beyond the grave and a thousand blessings that your death might be like mine: without pain and distress, dying with honor, dignity, love and respect. Page | 23


Stand By Me Driving to my dying patient first thing this morning I’m anxious to see if his night was peaceful. The rattle had begun the day before, gurgling secretions rumbled in his throat. Another nurse visited for me yesterday. Even though I wanted to be the one to go, there are times when I can’t get to everyone. Seeing patients every week creates a bond, but I knew the other nurse would do everything right. This morning I arrive to find him in poor condition. He is struggling to breathe with fluid in his throat. His head moves from side to side, arms thrash wildly, eyes squint, and a piercing moan is the only sound he makes; it is an awful sight. Fear builds inside me, my eyes open wide. I don’t know what to fix first. It’s one of those moments when I have to reach back into my mind to rely on training and my years of experience. I run out to my car, dig frantically for a catheter, and run back in. After giving medicines for pain, for restlessness, for secretions, I insert the catheter tube. The pain from a full bladder is eliminated. One step at a time I tell myself; stay calm. His daughter Jan rushes through the front door. She takes a look at him lying in the hospital bed and asks what she can do. She paces from room to room, pleading for help. “I don’t care what it takes,” she says, “I just want my dad to be out of pain.” It is time to wait for the medications to do their work; I’ve given the maximum amount ordered. I get on the phone with my manager and say, “There is an acute crisis here. Can this patient go to our inpatient facility?”

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I call our nurse practitioner, Debbie. Hearing her voice is like being a little child lost in the woods and suddenly hearing my mother’s voice. I absorb Debbie’s much needed support. Her calmness radiates into me, through me, and makes it all the way to the patient’s daughter when I get off the phone. I stand beside Jan looking at her father and say calmly, “Okay, he will be comfortable soon; this is the plan.” I follow Debbie’s instructions to give more medications, and wait for an hour; later he will be transferred to our facility. The patient’s wife, Gloria, and Jan are waiting for the medications to work when Allyson arrives. The timing of this hospice social worker is perfect, waiting is hard. Allyson comes into the room with open arms, gives Gloria a hug; one of those long squeezes that shows genuine love. Gloria closes her eyes during the embrace. When she opens them tears line the inside of her eyes; Allyson has reached the sadness, some tension is relieved. Jan’s phone rings. Our hospice Chaplain, Mi Sook, is on the other end offering help. There is a warm feeling inside me, pride in our hospice team, a sharp awareness of compassion that comes from the human heart. We are all working together well, relieving more than the patient’s pain. I really love this job. When the patient is comfortable and Jan understands what to do next, I leave the home. Allyson stays to continue emotional support. I turn up the volume on my car radio and the song “Stand By Me” is playing. I sing the words out loud, “If the mountains should crumble to the sea, I won’t be afraid, as long as you stand by me.” Little goose bumps appear on my arms. It is like some fabulous epiphany has just come to me. Isn’t this what hospice is all about? Debbie stood

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by me, I stood by Jan, Allyson stood by Gloria, Mi Sook stood by Jan, and on and on. It is beautiful! I pull into the driveway of my next patient when my cell phone rings. It is Allyson telling me the patient just died. I return to the home for the death visit. Jan is thankful her dad is no longer suffering. When the funeral home director is on his way to pick up the patient, Allyson and I leave the house. Walking to our cars she exhales loudly and says to me, “That was too intense.” While Allyson tells me the story of the patient’s last breath, I sing the song in my head, and with little bumps on my arms, I faithfully stand by her.

- Susan Randall, RN

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Expressions