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Expressions Creative Works from the Members of HPNA

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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 Samaritan Home Health and Hospice Prescott, AZ

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My friend; 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, 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, 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. 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 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 Page | 5


for the dying man. The first hour or two I continued the cleaning that Ashley had started. I checked on Mr. E frequently, but 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 Page | 9


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. Page | 11


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 I don’t hear well or at all, Page | 14


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 | 15


HPNA Expressions