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Topics About 'Death And Dying'.

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  1. This week, the New England Journal of Medicine reported that home is now the most common place Americans die of natural causes. For centuries, death was viewed as a natural process and those dying were cared for at home by family and community members. This changed in the early 1900s when the dying process became more medicalized and most people were in the hospital at the time of death. The current trend reflects the increasing rates of hospice enrollment for services that allow people to die where they want. Study Method The authors, Dr.Haider Warraich of the Veterans Affairs Boston Healthcare System and Duke University graduate student Sarah Cross, used government health statistics on natural deaths for the study. Data was analyzed from the Center for Disease Control and Prevent and the National Health Statistics database for deaths in the U.S. from 2003 to 2017, excluding deaths from external causes, such as accidents or homicides. Study Findings There were over 35.2 million deaths in the U.S. from 2003 to 2017, excluding deaths from external causes such as accidents. Cardiovascular disease was the leading cause (29.3%), followed by cancer (24.5%), respiratory disease (10.5%), dementia (7.9%) and stroke (5.9%). Where Deaths Occur The following table compares the findings for where people died in 2007 versus 2013: Place of Death 2003 2017 Hospital 39.7% 29.8% Nursing Facilities 23.6% 20.8% Home 23.8% 30.7% Hospice Facilities 0.2% 8.3% Differences in Who You Are The data analysis showed differences in place of death according to who you are, with nonwhites being less likely to die at home. According to the National Hospice & Palliative Care Organization (NHPCO), the demographics for Medicare hospice beneficiaries in 2017 are as follows: 83% White 8% African American 6.4% Hispanic 1.2% Asian 0.2% Native American Several factors play a role in the low utilization of hospice among minorities. These may include: Lack of awareness among patients, families and clinicians Spiritual and religious beliefs that support preservation of life Mistrust of the healthcare system Organizational factors such as lack of interpreters and minority clinicians Differences in Diagnosis Data analysis also revealed patients with cancer were more likely to die at home or at a hospice facility. Patients with respiratory disease had the greatest odds of a hospital death and patients with a stroke had the lowest odds of dying at home. The NHPCO published the following diagnosis statistics for Medicare hospice beneficiaries in 2017: Cancer- 30% Heart Disease- 17.6% Dementia- 15.6% Respiratory- 11% Stroke- 9.4% Chronic kidney disease- 2.3% The Need for Conversations As nurses, we can advocate for our patients by encouraging conversations with our patients, families and caregivers and the healthcare team about their wishes for end of life care. These conversations are important in helping patients, families and caregivers be on the same page when faced with making difficult decisions. The Institute for Healthcare Improvement sponsors The Conversation Project to help us have conversations around end-of-life issues. A starter toolkit is available online for free download and print. Moving Forward The trends identified in the study show that progress is being made in end-of-life care. The authors identified a need for more information about the experience of patients dying at home. Understanding the patient’s experience is critical to the development of policies and services that ensure quality end of life care. Are you surprised by the study findings? Additional information Changes in the Place of Death in the United States NHPCO Facts and Figures
  2. The call came in while at work. My mom's brother Steve had been rushed to a hospital. He was dying. I decided to go on the weekend when I was off, as my partner at work was out sick. I flew into Canada and made my way to the hospital. My aunt, a retired RN, was there with him and had not left the bedside for the last five days since his admission. They had been married 51 years and did everything together. She decided to go home for a few hours to freshen up, while I stayed with him along with his older daughter Carol and her family who came a few hours later. As I turned and positioned him gently, he screamed in pain. His prostate cancer that had been in remission for 16 years had come back with a vengeance and spread to his bones and lungs with metastasis to his spine. He had an ineffective cough and had phlegm in his throat that we could not suction as it was deep. His lungs were clear. Every time he coughed he would begin to panic as he felt his airway was blocked. He would ask to be lifted to sit up higher and struggle to breathe. I constantly heard the death rattle and saw him struggle to breathe. It was hard to watch and I felt helpless wondering how I could ease his suffering. His mind was clear and he was fully conscious. His nurse Laly came in. I tentatively asked her if his pain medication protocol could be reevaluated as it did not seem to be helping him. I also asked if we could up the oxygen as he was only on 1.5 liter due to his Chronic Obstructive Pulmonary Disease (COPD). "At this point Laly, we would like him to be comfortable. His COPD causing respiratory depression when the oxygen is increased is the least of our worries. What do you think?" She smiled compassionately. "I absolutely agree" she nodded as she adjusted the oxygen flow meter. She then left to page the MD in charge and ask him to adjust the Dilaudid IV for pain. Later the doctor came and we talked about the plan of care. He would not be transferred to a hospice bed as there were none available but would get the same care on the floor. As uncle slipped in and out of consciousness he wanted me to sit next to him and hold his hand. "Do you know Annie that I am waiting to go? I am going on a journey. The vehicle has not yet come for me. It will come. It has so many wheels and has to make so many stops----." I smiled through my tears. "It will come uncle, in it's time." "Annie, sometimes when I see you, I think your mom is sitting next to me and Jerry my brother is standing nearby." Both uncle Jerry and my mom Mary had passed years ago. I am sure they were visiting him unseen by me but clearly visible to him. His eyes clouded and he fell asleep his breath rasping.I gently removed my hand but his grip tightened. "Annie, don't go!" "I am right here. You are safe." He lapsed back into a fitful sleep. Aunty and I looked at each other. "Aunty Bea, you have to give him permission to go", I said softly. She sobbed and shook her head. "I know. I have to. This is so hard. I can't bear to see him suffer." Her composure that had been rock solid throughout the day, when visitors had come from all over Canada and the United States, crumpled now that they were all gone and she broke down sobs racking her body. RN Lally came in to see both of us in tears crying softly as he was in a double room with another patient behind the curtain. Her eyes filled and she walked out. In half an hour she came back and signaled us with her eyes to stay quiet. "The doctor told me that he needs to be moved to another room as his condition is worsening and he needs some medical procedures done." She announced loudly. She quickly packed our stuff and took it to a private room, two doors down. A couple of other nurses came and helped move his bed over. She even got us two sleeping sofa chairs for the night. This room was big, spacious, with a bathroom attached with a stand-up shower. It had a window ledge where you could sit and get a beautiful view of the city. Once we were settled she told us that they gave uncle a private room so that he could be surrounded by his family in peace as he died. "I see that you are a prayerful family. This way you can say your prayers, sing and not be afraid that you are disturbing anyone. There is a window on one side and the hallway on the other side of this room. So you can sing, cry, talk and it won't disturb anyone." That night I forced aunty to sleep and I sat with uncle my hand linked with his. Once aunty got up around 4 am we kept him company till dawn. She gave him permission to leave and promised him that she would take good care of their three girls. "Steve we have been together for 53 years and been married for 51 years. We always did things together. I wish I could come with you and die with you but I have to stay behind for our daughters. When you go to heaven advocate for our family with Jesus. It's ok to go. I will take good care of our daughters", she sobbed, her face on his chest, her hands around his neck as she leaned over the bed. I cried stifling my sobs in the dark listening to her, my heartbreaking for her. I wiped my tears, got up and moved uncle to one side of the bed. "Come, aunty, get into the bed with him. This is the best thing you can do for him and you." She got into the bed and cradled him gently. He slept peacefully in her arms. The next day family and friends started pouring in, some driving as far as New York, Detroit, and Chicago to see him. My flight back to New York was in the evening and before I left, I kissed him on his forehead leaving my lipstick on him! His eyes flew open and he asked me where I was going! I told him I was leaving to go home but was leaving my lipstick and prayers behind! Uncle hated lipstick and that had his daughters smiling through their tears. We said goodbye with our eyes and I walked away knowing I would never see him alive again. He lived for three more days. Everyone who had planned to fly in or drive in to see him got a chance to see him. Early morning on the third day, aunty cradled him and said the Divine Mercy Chaplet in his ear and sang a song about the Holy Spirit. As she finished the song, she looked at his face. His breath had stopped and he had slipped from this world to the next. My family drove to attend the funeral. When we were at the gravesite we realized that it was close to the airport and that a plane took up every 30 seconds. When the coffin was lowered into the grave, a jet roared overhead, the familiar Orange colors of Air India, the official plane of India, his birth country. Just like he had told me his vehicle had come to take him home!
  3. jeastridge

    End of Life: The Final Word

    "If anyone is never at fault in what he says, he is a perfect man, able to keep his whole body in check." James 3:2 I reach down to touch Anne's* hand, my own fingers still chilled by the outside morning air. Her eyelids flutter, letting me know she was aware of my presence. I speak gently, trying to not disturb the threads of silence that hang heavily in the room. "How are you doing?" She does not voice a response, but the furrowed brow tells me that she is thinking of how to answer my question. As a hospice nurse, I come on the stage of life when others have played their parts and now stand silently in the wings, witnesses to life and death. The chemo team is gone, the transfusions are mostly over; the doctors with their serious pronouncements have faded into the background. Standing beside the bed are the one best friend, two of the six children, and a few others that come and go to leave their gifts of steaming soup or fragrant flowers, attempts to brighten the long journey home. Anne's eyes open and she looks at me, focusing through the curtain of pain and the blessed numbness of opiates. "I'm ok," slides out in a whisper. I stand by, struggling to find the best words, the question that might help her along the way, the voice that will not hurt, but instead help. At times like these, everything matters and the burden of that knowledge, keeps my mouth still, waiting for the Holy One to fill it with direction. The others leave the room. I hold her fingers in mine, while palpating her pulse, assessing her color, monitoring her respirations, checking her skin for signs of breaks. As I wait, the question spills out, "What is the one thing that bothers you the most about all this?" A single tear, creeps down her tissue dry cheek and she answers, "I'm afraid of leaving the children. I'm afraid that they will grow apart after I am gone. I won't be here for them to come home to." She speaks with some effort, but as the words well up, expressed from her spirit, they also relieve some of the pain, pent up in her aching heart. I have no response. None is needed. Saying the words and shedding the tear, seem to ease the crack in her heart. Her respirations even out, her eyes close, apparently more focused on the beyond. Words matter all the time. It's just that at the end of life, there are so few of them left, that we must count carefully to make sure there is no waste. That awareness keeps us from using them foolishly. As we leave the bedside of the dying, may we carry with us the desire to use our words carefully, every day, not just on the final ones. Dear God, Grant me your words today. Let me be silent or let me speak only at your prompting. Give me a renewed awareness that words matter. Amen. *Name changed to protect privacy.
  4. nursebboop1

    An Honor

    I began my practice as a hospice RN in 1996. At that time the facility was seated in a pocket of the Midwest where "hospice" was not often spoken. I worked for a small hospice that had a census of eight (yes, you read that right-more staff than patients). I had already been a licensed nurse for fifteen years, but I was new to palliative end-of-life care. As a novice in hospice nursing, I brought acquired skills in medical-surgical, psychiatric, obstetrics, triage, and home health in addition to forty-seven years of invaluable life experience. As a newly mentored hospice nurse, I was hungry for information. I soaked up everything I read and heard in a sincere effort to ensure a "good death" for my patients and families. I quickly learned that comfort was physical, emotional, and spiritual and that I would be providing comfort to the patient and family. In the case of Rosa, her family included what little family had survived her and extended to the staff and residents of this facility where she had resided for several years. This would be my "unit of care". This facility is a well known and respected long-term care facility in the Midwest that, at best, tolerated the presence of hospice providing care to their residents. They perceived themselves as being "*THE Experts" *in providing care to their elderly residents until death and we were referred to as the *"Angels of Death*". There didn't seem to be enough boxes of doughnuts or cookies brought in by our agency to allow us to become part of their care team. As I took the chart from the rack that morning I was told that Rosa "was easily agitated and had always been that way...it was just her personality". I then slipped away to a corner behind the nurses' station to gather clinical data from Rosa's chart. Rosa, at over 100 years old, had a myriad of co-morbidities including a history of breast cancer that the family had not elected to treat. She was on several medications which included Tylenol for pain. I entered her dimly lit room and saw a small woman lying in bed who appeared to be sleeping under layers of soft blankets. Within seconds she must've sensed my presence. Her beautiful searching dark eyes were fixed on me while she asked me who I was. As I turned to put my bag down I noticed a framed picture on her nightstand. The eyes looking back at me were the same eyes, but the face decades younger and breathtakingly beautiful. This was one of many pictures sitting around the room that would serve to help me piece together her story. What I learned over time of Rosa's story may seem irrelevant from a nursing perspective to some, but when providing comfort to Rosa at the end of her life the details were essential. Her life as an African American woman from the Midwest who became a famous Parisian fashion model in the early 1900s was rich with stories of success as well as unspeakable tragedy. As she spent her last weeks and days reviewing her life to herself and to others she talked, yelled, laughed, and cried. I listened and learned as she celebrated and also grieved her life. No, she was not hallucinating as some commented. This was important work for her. I had the privilege of witnessing it while not doubting for a second that it was real. Sometimes she was a child talking to her mother. Other times a spoiled young wife demanding attention from her devoted husband. She was reviewing her life. This review was important. She was in a kind of labor many do at the end of life. I was there to listen and support her as best I could--providing comfort. What was a priority for me that day was to begin my plan in getting her physically comfortable so that she could have some quality of life until her story here was over? In my physical assessment, I tried to hide my horror as I looked at the fungating tumor of her left breast. No one had prepared me for what I saw and smelled. I learned later that she had always been a "feisty woman", but the agitation that was reported by staff had to be impacted by this growing cancer that was gnawing away at this once beautiful proud body. The week before I had held an educational in-service at this facility on pain management emphasizing how untreated pain affects the patient emotionally, spiritually, and physically. The staff held onto their old beliefs about morphine--the *M WORD*. "Morphine hastened death" I obtained orders for a low dose of scheduled sub lingual Roxanol. The next day I found the patient asleep, more peaceful. The staff was not open to the possibility that she had been slept deprived due to intractable pain and was getting much-needed rest. I was able to contact a niece, Millie, who met me the next day in the dining room. She helped me understand the stories. Rosa had told me about a fire, and her babies dying--she wasn't hallucinating as others said. I never thought so. Rosa had also smiled with pride as she told me about the young black race car driver whose picture hung in Rosa's room--Rosa's late husband Martin. Millie told me about the impact the couple had made for Negro race car drivers in the early 1900's. I asked what music she enjoyed. Soon Rosa was listening to recorded tapes of Mahalia Jackson singing gospel hymns while propped up on lavender bed pillows. She smiled and relaxed a little more as the spiritual balm soothed her. When it seemed that Rosa had reached a level of physical comfort I obtained orders for a 25 mcg Fentanyl Patch explaining to staff the ease of administration as well as its pain relieving properties. I also knew it would help ensure her comfort because of its steady delivery and that doses would not be held because she was asleep and therefore "not in pain". Over the next month, the Fentanyl was increased to 50mcg. A bowel regimen had also been put in place effectively. I was also able to work with the staff in obtaining orders for wound care that diminished the musky sweet odor coming from her breast tumor keeping her worn satin gowns from being stained by cancer that was bringing her closer to death each day. Vanity had been a part of her glamorous professional life and was no less important now. I hope that at least one staff nurse in that facility was able to provide comfort to her next patient and the next using some of the tools I had been given and passed on during my care of Rosa. Coaching and teaching, I believe, is the essence of nursing. Rosa died in less than a year after I joined her on the last weeks of her journey. She was 102. It seemed to be a "good death". Rosa gave me much more than I gave to her. This was true with most of my hospice patients. Life is a gift. Live today--someday *is* today. Life is a journey full of good and bad. It begins and ends with a process both painful and beautiful. To have been a part of this intimate time with Rosa was truly an honor. (names and places changed)
  5. curlygirlie3

    Caring Vicariously

    It has been two weeks since I found out that my grandmother was in the hospital, ten days since her surgery, five days since I last spoke to her, four days since she moved to hospice, two days since the last time she was awake. For 81 years my grandmother has been a vibrant, healthy woman. Bike riding, swimming, square dancing, crafting, and enjoying time with her boyfriend filled her days in her small Florida retirement community. She must have known that she was sick. Colon cancer does not reach stage IV without a person experiencing symptoms. Waiting, ignoring, and deferring treatment was her choice; I respect that. The difficulty comes with the swiftness of decline - a sudden drop on the carnival ride that leaves one's heart in their throat. As a nurse, as a granddaughter, and as a person I want to be there for her. I want to swab her dry lips, arrange her pillows, and hold her hand. The gulf between me and her bedside is filled with geography, time, money, and obligations to my family and work. The guilt at not being there to care for her is enormous. After all, I work with cancer patients daily. I do all of the things that I want to do for her for strangers. Wait...I do it for strangers. Another family recently experienced a profound loss. I first met Ms. Smith when she was recovering from cancer surgery on my unit. She was beautiful, kind, generous, and funny. She was a gentle soul and I could tell that she had worked with children for most of her life. When I meet patients like her, my fondest hope is that I will never see them again. Don't take that the wrong way. If I don't see them it means that they are doing well. Ms. Smith was readmitted to the unit more times than I can remember with complications from her treatment. Despite losing her hair, appetite, and eventually her physical mobility, she never lost the qualities that made her so special to the staff and so loved by her family. In her last days I was her nurse. I swabbed her lips, I kept her dry, and I gave her medications to keep her comfortable. When she passed I paid my last respects as I placed her in the shroud. Unsurprisingly Ms. Smith has been on my mind for the past two weeks. I believe my memories of caring for her are helping me cope with the fact that I cannot be there for my own grandmother. I also believe that there is a nurse somewhere in Florida who is caring for my grandmother in the same way that he/she would care for their own family member. Providing nursing care for the sick and dying requires a sort of suspended reality. That is not a stranger in that bed, that is your mother, father, grandparent, or child. As a profession, we have a collective belief in the Golden Rule. This belief may be tested daily by the stresses of the job but we must never let it waiver. Somewhere out there a family member is holding out hope that you are treating their loved one as your own. To every nurse that reads this, please keep the belief in the Golden Rule alive because, one day, as I have, you may find yourself in a similar situation.
  6. hellerd2003

    We Are Nurses

    There are some things for which school prepares you. How to spike an IV bag, how to administer standard medications as scheduled; how to make the perfect care plan. Yet nursing is not about the perfect care plan, and although one can, as a nurse, pride themselves on their ability to give out daily meds or set up IV tubing, there is so much more than that to this profession. Nursing school never prepared me for my first patient death. For how utterly helpless I would feel standing in my patient's room, relegated to being the "recorder", because I had the least amount of ACLS experience. To the emotions, I would feel walking out of the room and telling the family that I was sorry, and we had done all we could, but their loved one was dead. To walking away, tearing up, thinking, "Their nurse stood holding a clipboard and to record meds and times. Maybe if I had more experience, the patient would still be alive!" The crying-drive-home was never covered in nursing school. Nor was covered the Starbucks run. How a day off can mean a run into work. When I last went for a latte, I was greeted in the entry by the son of a patient who had died six days prior, while I was on vacation. All I wanted was an iced latte and a drive home. But I spoke to that son for 20 minutes, offered my condolences, and watched him walk out the door, knowing he'd be burying his father, my patient, the next day. Nursing school never prepared me for the guilt I'd feel, and feel to this moment. I did my best. However, I knew that family. I left for a VACATION. Could I have made a difference? No. I know that rationally. The patient's prognosis was grim. As a nurse, however, that was no consolation. I barely made it through my coffee order without tears being shed and sitting in my car, I called my husband, my link to the living world. While he loves me with all his heart, he admits he cannot understand. Such is nursing. I returned from that vacation, prior to meeting that family member, to a letter in my employee mailbox stating that I was being recognized for excellent patient care. I ran to Human Resources, cashed in my letter, and received two movie tickets. Two movie tickets. For excellent patient care. Nonetheless, I went to work. Felt GOOD. Like I was worth something. My manager arrived to work. I received another accolade for good patient care. A $15 Starbucks gift card. How cool is that? Now, I love Starbucks like the rest of y'all. Coffee is my salvation. However, I can't drink coffee at work (no beverages allowed at nurses' work stations-save your thirst for your 30-minute break). Hence why I was at Starbucks, on my day off, meeting a son whose father, my patient, had died and was to be buried the day after I got my coffee. My manager wrote me a note with my Starbucks card. It reads, "Thanks so much for all that you do. When things get tough to remember that you touch lives!" I recalled that on the way home from Starbucks. Although no consolation, I hold on to that letter. It will be with me in my work bag as a reminder. For that is what nursing is. We work. We strive. We fight against doctors, families, labs, radiology . . . heck, even dietary! Often, we feel we get no respect. Sometimes, we fight against each other. No matter who we fight against, we look to create the best possible outcome. We stick our necks out to save lives. We deal with the heartache when we cannot save a life. We are nurses. That's what we do. This is why I love my job.
  7. End Game RN

    The Path of Smoke and Ashes

    It was the end of Nurses' week 2007; I had just parked in the North garage and was heading toward the hospital. I walked down the short set of stairs leading to the cobblestone path in front of me. I looked towards the West, drawn by the unusual orange glow streaking across the late afternoon sky; following the curve of the Earth. The sun continued its descent silhouetting the wisps of the pale grey smoke that had been drifting down from the North where the fires were still burning. It was the end of Nurses' week 2007; I had just parked in the North garage and was heading toward the hospital. I walked down the short set of stairs leading to the cobblestone path in front of me. I looked towards the West, drawn by the unusual orange glow streaking across the late afternoon sky; following the curve of the Earth. The sun continued its descent silhouetting the wisps of the pale grey smoke that had been drifting down from the North where the fires were still burning. I stared at the pale yellow orange orb, watching as the ashes and smoke drifted in on the breeze creating a kaleidoscope of colors, ever changing, illuminating the seemingly endless horizon. I could see the reflection of the glow painting the cobblestone path where I now stood. Unable to look away, staring, I could feel a part of me separate from my corporeal self. I embraced my new found emptiness. Nothing seemed real, a dreamscape lay in front of me, in me, possessing what was left of me. As I looked on from outside myself, I saw the body of a small bird a few yards from me, unmoving, on my path. Drawn to this still, small creature, walking over to it, bending, then kneeling beside it, I stretched out my hand picking it up, cupping this tiny bird as I stood; lifting it off the path. It lay very still, eyes open, not yet sunken back into its head. Its body warm in my hand as I said a silent prayer. The feathers lifting and moved slightly with the warm breeze. I gently touched this bird, measuring it's length with my middle finger, caressing it, touching the head and the body, manipulating the wings and the legs. It was obvious that this soul had recently passed. For a long moment I was sure that this perfect creature was alive, yet in the same instant I knew that it was as dead as I was, accepting our shared fate. The sounds of the city, the hospital, or any one individual walking past me faded into nothingness as I stood holding the bird. There was no longer and I or me or sense of self. From a distance I heard some one speak to me, directly to me, surprising because this was the first time in several minutes that I found myself connected to another person. I turned around and saw a man standing on my path looking at me, still talking. I held the bird out in my hand so he could see what I had and how beautiful it was in death. He seemed to know who I was, he told me I shouldn't have picked up the dead bird, that it could have died from disease, he mentioned bird flu or any number of reasons a wild bird would die suddenly. This man was someone I should have recognized immediately but I couldn't place him or understand how he fit into my life. I was once again aware of self and where I was and why I was here, standing on the cobblestone path on my way into the hospital where I work. Faintly insulted by his statement that this bird could have died from bird flu or any other avian diseases; I told him to look at the bird, how healthy it appeared. I told him that there wasn't any evidence of visible injury to it's body, whatever had killed it must have been something other than disease or trauma. I also told him that concluding that bird flu was a possibility was not something I could take seriously. I still could not identify this man, knowing I should know him. I knew I had worked with him in our ICU. I thought that he must be one of the physicians I worked with. He continued speaking; He told me that where his sister lives a number of birds had just fallen from the sky in mid flight and that no one knew why. After a few more minute of conversation, puzzled by my inability to identify this man, I continued to study him hoping that something he would say or do would provide me with a clue as to who he was. He said goodbye, continuing on his way. I buried my bird beneath well kept bushes just beneath the mulch. I touched this bird one more time and said goodbye. As I left the path, stepping onto the sidewalk leading into the hospital, I suddenly realized that I knew this man I knew his name. I turned around, looking at his back as he walked toward the parking garage. I whispered his name softly, the words meaningless as soon as I said them. Unaware of my profound revelation, he continued walking. That same evening after I had gone home, I spent time looking for information about sudden unexplained bird fatalities. I found that the fires from the North, spreading smoke as far South as the Upper Keys, brought down by favorable winds; caused the birds to die, their fragile lungs unable to cope with the smoke. The next day I approached this physician as he made rounds with his team in our ICU. I told him that the cause of the unexplained bird deaths was the smoke from the still burning fires in the North of the State. I called him by name without hesitation or confusion. He told me that he too had learned what had killed these birds. It seems that he did some research, or more than lilkely spoke with his sister again. Nurses' week came and went. Months later, now November, I have yet to speak again with this attending. Polite nods, brief smiles as we pass each other in the hallways, communicating only when discussing one of his patient's in our unit, never bringing up our shared experience on late afternoon in May. Odd how our paths cross, human, animal, life and death. Never knowing the one path we will take until we come to it, our souls finally freed to ride the winds of smoke and ashes. Eeka End Game RN
  8. BSN_after_40

    Witness to Goodbye

    Over a few months, we had a rash of cancer patients on our ward. The time period was somewhere in the early 1990s. We had many end-stage patients, most were elderly. But there was one young woman I will never forget. She was in her early 30's. She was married with three small children. She had colorectal cancer. From my recollection, we had admitted her a few times over the previous year as she was receiving chemo and needed IV fluids to rehydrate her from the side effects. Our medical surgical floor had a variety of acute cases, but back then, we served many end-stage patients that probably would have been sent home on hospice or a nursing home today. So it was always interesting and sad at times too. A lot of time was spent on talking with families, explaining end stages choices, and comfort care practices. The young woman, who I will call Brenda, was told that her cancer was not responding to chemo, and to make her final arrangements and decisions. We tried our best to give her family the privacy and time they needed to do this without a bunch of us nurses lurking about while trying to remain supportive. How awful I felt every time I came into her room, trying to make small talk to a woman not much older than I was, knowing she was dying. She was, of course, sad and very quiet. She offered little conversation and limited what she said to simple requests for pain meds or another blanket. Her husband must have been about the same age. He looked pretty tired and washed out. He too was not open to many conversations. Our social worker tried to talk him into incorporating hospice services but he refused, I am sure it was mostly shock and disbelief of the whole situation. The children were confused why Mommy couldn't come home. The oldest was maybe 8 or 9; he knew something was terribly wrong. I would guess the other two children about 5 and 3, with the youngest being a little boy. The younger two children would be trying to play while visiting, only to have everyone else in the room very unresponsive to any happiness or laughter. Many times we would offer them an ice cream treat to try to lighten the mood in the room, soon they got to know which nurse to approach for a treat when they came. Then, the husband started coming up alone. I couldn't help but hear them discussing talking to the children about how serious the situation was, and how they needed to do this soon. Brenda was receiving heavy doses of Morphine to control the pain, and her abdomen was filling with fluid. She was also told the cancer had spread to her liver. As any nurse with some experience caring for end-stage cancer patients can tell you, there is a distinct odor a patient will omit when they are terminal. Even if they are clean and continent, the odor is present. We began to sense this odor in Brenda's room. We knew she was drawing nearer to death. A couple of days later, in the evening, the three children came in with their father to see Brenda. Of course, ice cream was given out to 2 smiling faces, and one not so happy. Seeing their mother so weak and frail was wearing on the oldest, it was very apparent. He tried to hide his tears when we would enter the room. I knew the primary bag was running low, and soon I heard the IV beeping as it was almost empty. When I came in to hang a new one, I really wish it could have waited a few minutes more. I did knock, but unfortunately, I came in during the midst of the big speech Brenda was making to her children. She said, "I am really sick and I am not coming home again guys, I am sorry." The news was too much for the oldest, he knew that she was very ill, but no one had voiced it to him yet. Hearing those words sent him out of the room to the waiting room crying and again trying to shield it from anyone in the hospital ward. The two younger children began to ask innocently "why?" Brenda continued to talk very softly about how she was not going to get better, and God wanted her to come to heaven to be with him. She had such grace to her voice, she knew it could be the last conversation with them and repeated how much she loved them several times. It was a conversation no mother would ever choose to have to make, but she did it very well. I was starting to cry myself as I spiked the bag and tried to punch in the numbers through blurry, tear-filled eyes. Trying to stay focused and professional was very hard; I wanted to be invisible at that moment so I wouldn't take any attention from the situation or my reaction to overhearing that intimate conversation. It was only a few minutes in the room, but it felt like hours. After I left the room, I went down the hallway, ignoring my co-assigned who was trying to tell me she was going on break. I brushed past her and went into the bathroom and cried. I couldn't tell you how long I was in there, but soon my co-assigned came and knocked on the door to ask if I was alright. She had no idea what I had just witnessed. I said, "just give me a few minutes and I will be out." I have gotten used to caring for patients during their last days, cleaning them up and preparing them for the funeral home; it can become too routine. For the case with Brenda, I took it in pretty deeply. Seeing the faces of the ones she was leaving behind, wondering how they were going to handle being without her really haunted me, it still does to some degree today. As nurses, we are expected to care for our clients, regardless of anything. It makes us professional when we can handle anything with a straight face from bones sticking out of the skin to an abused child. But we are not robots; certain things sink into our thick skin, and remain there forever, like a scar. Brenda really sunk into my skin. I guess it was because I too was a young mother at the time. My kids are my whole world, and the thought of leaving them behind at such a tender age would have been too much for me to even imagine, or want to imagine. Brenda went downhill fast after that evening. She lingered for a few more days but was unresponsive. It was so hard to face her family in the room, waiting for her to pass. We kept her clean and comfortable. They knew when we came in every couple of hours to step out without even having to ask them. She was 32 years old when she finally passed. Her husband was alone with her when she took her last breath. He did eventually allow the hospital social worker to help with finding resources to help him and the children adjust to life without her. I wonder about him and the children from time to time.
  9. TheCommuter

    Death Happens. Get Used To It!

    Here's a truthful horoscope for you: we're all going to die! Before we get started, ask yourselves the following question: What exactly is it about death and dying that disturbs you? Once you pinpoint the source of your fears, keep in mind that other people who once had the same reservations have moved on to become stellar nurses with solid careers in the nursing profession. If you cannot identify what it is about death that makes you fearful, that's also okay. It's probably a sign of our modern times. Let me explain further. In previous generations, death still remained a sad and dreadful time for people who saw family members die. However, the main difference between the past and the present is the fact that death and dying used to be highly visible, very out in the open, expected, and an accepted part of life. During yesteryear, 'passing away' was a personal event when people died at home encircled by loved ones who said their goodbyes. The surviving kinfolk lovingly gave post-mortem care at home in the hours after death. In the modern 21st century, the vast majority of death now occurs in healthcare settings such as hospitals and nursing homes. In other words, death has mostly been removed from intimate home settings, so many people fear what they have not seen. American society now does too efficient a job at hiding death from view and this contributes to making death seemingly creepy to some. Is it bad for you to fear dead bodies?No. Your fears are actually normal due to the society in which you were probably born and raised. Regrettably, death is all around us, and you will need to become acclimated to it if you plan to work in most areas of nursing. Don't worry, because you'll start to become more familiar with death as you get more exposure. You'll actually be relieved by some deaths and saddened over others. Although death will never be easy on you, it will get easier over time. What do you do if a patient dies?It depends on the code status, healthcare setting, and situation. You would immediately call for help if you find a dead or dying patient who is a full code at a hospital. Press that code button, call the rapid response team (if available), lay the patient on a board or hard surface, initiate CPR, and so forth. The sooner you summon assistance, the quicker your patient's room fills with people to help with the resuscitative effort. Patients who have current DNR/DNI orders are dealt with differently. We want to notify family promptly if the patient is in the process of actively dying. In an ideal textbook world, someone would remain with the dying patient until family arrives to ensure the person doesn't die alone. Dying patients who are on hospice or end-of-life care receive comfort care such as frequent turning, bed baths, pain control, oral care, and other measures to maintain dignity before death. When the patient dies, someone makes a pronouncement of death. In the state where I practice nursing, pronouncing death is within the RN's scope of practice. Some families want to spend time with the body, so we give them time for that. What happens with the dead body?The nursing department is usually responsible for post-mortem care such as cleaning the body and rendering the patient fit to be seen by any family members who may want to say goodbyes to their loved one at the bedside. At many hospitals, the nursing department is also assigned the tasks of placing the deceased inside a body bag, attaching toe tag identification, and transporting the body to the morgue. The mere thought of dead bodies might send chills up and down your spine right now, but I assure you that dealing with death will become easier with the passage of time and the accrual of more exposure. After all, death is a natural part of the circle of life. Don't let your fears deter you from nursing.
  10. tvccrn

    One Last Goodbye

    One night as I was the charge nurse and the ER nurse all rolled into one, I received a call from the front desk that I had a patient in the car downstairs and I needed to open the ambulance door so I could get him into the ER. As I ran down, I was wondering what I would encounter. I opened the door and as the car pulled in I saw a man hanging out the passenger side of the car. I went over to the side and saw that he was blue and not breathing. I ran into the ER to call for some assistance in getting him out of the car and into the ER. I also called for the CRNA that was on-site to do intubation. Normally our CRNA lived about 10 miles away, but he was on vacation and his cover stayed in-house. We got the man into the ER and intubated. The doctor came down and we stabilized him for transport to our SCU. Because we were such a small hospital, we had a special care unit that had three beds and some of the best nurses that I have ever worked with. The rest of the evening went by without any more commotion. I left that night feeling good about having saved someone. The next day, I came in and went into the unit to check on how the man had done overnight. I was told that he had pulled his tube out three times and was mad because we had replaced it. Apparently, he had not wanted anything done to prolong his life, but we hadn't been aware of it. Once, he had recovered enough, his doctor sat down with him and his family and discussed their options. He was made a DNR and all the staff was made aware of this. When he saw me I got a royal chewing out for having him intubated in the first place. That was the start of a friendship that went on for a while. I worked with his daughter and granddaughter, so I was soon his favorite nurse. Every time he came into the ER with trouble breathing and that blue look to him, he always made sure that no one else put a tube down his throat. Of course, a person can go on like that only so long before the body decides that it has had enough. The time came when he came in and was not responding. We placed him in the room that was directly across from the nurses' station and I made the family comfortable to wait for the inevitable. I checked on them periodically, but for the most part, they were left alone. Soon, the daughter came out and said that he had passed away. It was my responsibility to verify this information and get in touch with the proper people. I walked into the room and the harsh sound of his breathing was gone. I did the things I needed to make sure that he was really gone. As I looked at the family, there were tears in all our eyes. His wife hugged me and told me that I had always been his favorite and she thought he would be happy that I was there when he left. After gathering all the information from them that I needed, I left to call the coroner to notify her and to call the place that would handle his interment. He had decided long ago that he wanted to be cremated. As there was only one crematorium in the area, they were already out when I called, but they would be there as soon as they could. I relayed this to the family and told them they were more than welcome to stay if they wished. Some of them did stay. I provided them with privacy, tissues and any comfort they might need. Every time I went to check on them, although there were tears, there was also laughter at stories about his life. Once, they looked at me and asked me if I was uncomfortable with their laughter. I told them, no, I knew that they had been prepared for this and although it's never pleasant, it was nice to see that they could look back with love at the time they had spent with him. Soon, the service came and picked him up. The wife and daughter thanked me for the kindness of letting them stay and spending a last couple of hours with their loved one. I have always felt that a family should have as much time as they need to say goodbye. After they left, I had housekeeping come and clean the room. When they were done the door was closed and we all went about the rest of our shift. Near the end of the shift, the other nurse and I were at the desk charting on the night's event when a buzzer went off. We both looked to which patient was calling for assistance. It was the call bell from the room across from the nurse's station. As we were both at the desk, we knew that there was no one in there. Neither one of us wanted to go in, so we tried to cancel the bell from the console, but we were unable to. I felt that it was my responsibility to go in as it had been my patient that had been in there. As I walked into the room and turned on the light, I saw that the cord for the call bell was pulled out of the wall and was across the room. Now, with no one in the room that was eerie, to say the least. I hurriedly put it back and left the room. A few weeks later, I was talking with the daughter of the patient who had passed away in the room and she smiled at me and said that it was probably her father coming back to tell his favorite nurse goodbye one last time.
  11. School taught me everything I know. School taught me the delicate balance of life, how to be A FIXER. Fix problems and help patients achieve a better way of life. A patient, Lucy would teach me an entire new way of thinking...and fixing. I received Lucy one extremely busy night as usual. Scheduled a midnight shift, I settled myself. Lucy was only 56, and an end-stage liver CA patient. Full DNR scheduled to go home with hospice in the morning. She was 'on her way out' the departing nurse told me. I had never had a patient "on their way," so to speak. Only a nurse a year, I was lucky. I hadn't lost a patient yet. Not even a code. Came close. Luckily I got them to the threshold of safety...ICU. I realized that yes, every living thing is dying, but nurses are FIXERS...assisting medical staff to provide the best quality of life possible. Numerous IV sticks, drips, late night phone calls, and Code Blues had taught me that. After all, I became a nurse to help people get well, not to watch them die. Unfortunately, as I assessed Lucy I realized she wouldn't make it through the night. She couldn't speak. She just stared at me. Did not answer questions, did not move. Even my stethoscope placed against her chest seemed to evoke pain. Lucy's O2 saturation was only 88% on 6L NC. Vital signs were still stable otherwise. Lucy's skin was cold, her face expressionless. She broke my heart in ways I am unable to describe. Yes, indeed this woman was on her way. AND I COULDN'T fix it. No matter what, there was no fixing this situation. I reassured Lucy I would be right back. Her huge, sad brown eyes looked up at me.(I'm pretty sure she understood) I rushed to quickly assess my other patients and call her family. A 1:30 AM phone call from a hospital is never well received. "She's dead, isn't she? You can tell me, it's okay." Her best friend's voice quivered on the other end. I didn't know what to say...I felt lost. I felt scared. I calmly and simply told her the facts. And told her to get to her as soon as possible. I went back into Lucy's room almost in a fog...a daze. Poor Lucy. What am I supposed to do? "Lucy, your family is going to come sit with you tonight, won't that be nice?" I tried so hard to be calm and reassuring. I sat and held her hand until family arrived. Her cold, tiny hand. I hoped she could feel it, I hoped it brought her some sort of peace. Her breathing was becoming more erratic and shallow. I hoped she would make it until they arrived. Lucy was still not responding when her family arrived. Her o2 sat had decreased to 76%. She was refusing to wear any sort of O2 mask, ripping it off. With the family's permission, I left the nasal cannula in. She appeared to be comfortable. I sat with the family and waited. Answered questions, filled requests, gave them their space and called pastoral care. Lucy's monitor alarmed a short time later. Her family at her side, Lucy took her last breath. My chest tightened, and I wanted to cry for a woman I never knew. She was a friend, a sister, a mother. She was SOMEONE. She was loved. My heart broke for a woman and family I truly never knew. I turned off the monitors and allowed the family time to grieve. Lucy allowed me to realize a very important, and simple, thing. Not everyone can be fixed. For Lucy, her 'fixing' came not with a ventilator, drips, or medication-but with her dying. All I can hope for is that her family brought her some sort of peace and her exit from this earth was as beautiful as her entrance. This was all I could do, no fixing required. School spends years teaching you how to fix, but very little time on how to let go. Sometimes fixing isn't an option. I thought about Lucy for the next few days. Wondered about her life, what type of person she was. Eventually, my thoughts wandered and I moved on. But she taught me such an important lesson, I will never forget her. I'm sure each 'Lucy' will affect me, but hopefully never less than the first.
  12. mother/babyRN

    I Hear Singing and There's No One There

    It reminds me of the query "what came first, the chicken or the egg." Do you become a good nurse because of your life experience, or does your life experience make you a good nurse? I just don't know. What follows is a bare rough draft of my feelings on the second anniversary of the death of my father. I share it because as a daughter and nurse, I often felt helpless and selfish when involved in his care. I say selfish because it is so painful to watch someone you love suffer horribly and there invariably comes a time when one has to acknowledge that you desire it to end because it is just too tough on you. That is a difficult thing to admit and once you do, you have to find a way to forgive yourself for feeling that way. Of course, you want the person in pain to be alleviated from pain and despair, but nurses (and sons and daughters) are only human. When you are so personally involved with a patient or your own family, invariably the worlds of nursedom and daughterdom collide. There are difficult decisions and worlds of wonder to discover. The best advice or tip I can offer is to try not to lose yourself along the way...Thank you for allowing me to share... I Hear Singing But There's No One There... So it is just after one in the morning this November 21, 2007. I should be sleeping but I can't. Lately, sleep eludes me most probably because my body just has no idea how to fall asleep given my crazy night schedule. It doesn't really matter because I was always a creature of the night. There is something alluring about the solitude of night. I can't identify it but I've always felt comfortable with it. I call the night my blanket of safety. My dad felt the same way and I like to think, though I could hardly know, that I got that quirk from him. November 17th marked the second anniversary of his death. He died at home, which was in retrospect, so much better than dying at the hospital. I say that only as someone who has attended countless hospital deaths. However one spins the experience, it just doesn't compare with being surrounded and comforted by loved ones within the confines of one's own home. I think I knew the night before that something would happen. I wished it would. Though that is hard to admit to, it is true. Most of us would attribute that sentiment to wanting to end the suffering of the person who is sick. While that is certainly true, there is an element of significant pain of the ones left behind that just can't be ignored. It is so torturous to have to watch your loved one suffer and decline. I guess that means it is more about the ones left behind than the one who is destined to leave. I hate it when they let us humans in. I gave my dad some morphine to help him breathe without pain. My brother told me dad had a good night after that, perhaps one of the best he had had in ages. I felt horrible about that. Why hadn't I pushed to get him some sooner? After all, who in the world cared if he became addicted? Why wasn't I more proactive in that area? Why didn't I do more? Everyone expects so much of me. I'm the nurse. I'm the daughter. I'm the one charged (even if only in my mind) of taking care of everyone. Why couldn't I help my father? The evening before his death, dad finally spoke to his doctor about his wishes not to be revived should things turn for the worse. I knew as soon as I handed him the phone to have that talk with the doctor regarding his living will, that he was not long for the world as we know it. It wasn't that he had given up. He had given in. I was, in a weird way, glad for him. I knew how much he had fought to keep the illness at bay. I knew how much he desperately wanted to be there for my mom and their fifty year anniversary. I knew that it was nearly over. I just knew. I didn't sleep much that night. I spent the majority of the night praying to God that I would be there when he died. I cried much of that time but not for dads passing. He was at peace with that. I had heard him say so. His words to his doctor were "I've had enough, I'm tired, I believe in God and me thank you for all you've done, but I'm through." He said it as though he were having an ordinary conversation so I knew he was at peace. When he had started calling out to his parents not long before I knew time was brief. In the morning my mother called. She needed help to change the bed because dad had been incontinent. I felt a pain in my heart unlike any I have ever felt, but I somehow managed to at least try to nurture my mother as best I could, telling her I would be right over. In the shower, I wondered if I could be strong for her and everyone but most of all, for me. I remember thinking, foolishly and abstractly, that the fact I had gotten my period was not only inconvenient but kind of symbolic. In all my years as a nurse, it seems that there are always signs of life when death is imminent. During the birth of my son Christopher, as his arrival was being announced to my dad upstairs from the labor room, dad had been struck by the fact that at the exact same moment, another family was sobbing in the halls over the death of a loved one. Back then I stored that tidbit in my mind but never really thought of a time when it would be such a poignant memory. Funny how that happens to us all. Stored snippets of memory that somehow jump to the surface as if we knew all along they would rise to the top. The morning of the seventeenth was beautiful. It was sunny and not too cold. Only later did I realize that I had put on a red sweatshirt. Red was dad's favorite color. I wonder if I somehow just did it for that reason. I don't know. I hope so. I don't remember much of the ride over. How do you prepare for your father's death? I do remember wondering if anyone was going to be strong for me. How is that for selfishness? Always having to be the strong one is not an easy role to play. There are times when you wonder who is going to be there for you. You have to be sensitive to the needs of certain family members but it feels as though no one has to be sensitive to you. No one understands or really even has an expectation that you are suffering too. They think because you are the strong one that you will sail through. They think because everyone expects them to be less strong or more affected in some way that you will understand. That is such a hard place to be. To have to try and weed through all the sensitivities and nuances of everyone but not to have them have the same expectation for you. Dad was confused. His feet were purple. Just to turn him caused him immense pain and when he cried out my heart ached for him. I wished that he would die because it was so hard to see him in that kind of pain. I wished I had figured out a way to talk with him at length, knowing that he understood how much I loved him. I was never able to have the in-depth conversations with him my brothers had. As he gasped for breath after we finished changing his bed, I knew the mere fact that he had allowed me to assist my mother meant that he had truly surrendered to God. He had not given up; he had just accepted that it was his time. It was such an awful scene. I stroked his face and tried not to cry. I cried. Almost as difficult as watching my dad try to breathe was the sight of my mother in tears muttering over and over again, "It's OK Bobby, it's OK." I could see the years flash in my mind and could only imagine what was going through her mind. Was it the time her sailor Bobby had his necktie bitten by a horse? Was it that first meeting? Was it the birth of their children? Was it the difficult times? I imagine it was most likely a split second synopsis of their life together. I gave dad some of his medicine to help him breathe. It took a few minutes but his breaths became much less labored and he even looked peaceful. I don't know if he knew I was there. Mom took his hand and lay her head down on his chest, still moaning "It's OK Bobby, it's OK." For reasons yet unknown to me, as I stood at the door of the bedroom taking in the scene of my mother's farewell to my dad, I started singing a song he taught to me as a young child. "I hear singing and there's no one there, I smell blossoms and the trees are bare, all day long I seem to walk on air, I wonder why, I wonder why. There are times when I can't sleep at night. And what's more, I've lost my appetite. Stars that used to twinkle in the sky now a twinkle in my eye, I wonder why" I wonder why I sang that song, but now I am glad that I did. I like to think it soothed both of us. It occurred to me as I was singing that I had to let my mother know that she had to give dad permission to die. So, I told her she had to give him permission. "Permission for what?" she angrily spat my way..."Permission to die," I quietly replied in tears. "Bobby, it's time to go home." "We've been together for fifty years and I loved all the time we had." "It's time to go and stop suffering." At that moment I called my husband and asked him to come over. There had been so many occasions when we had thought the time had come only to have dad make a reprieve but this time I just knew. Dad was for once, breathing peacefully. He seemed calmer with mom...I left the room to call my estranged brother to tell him that dad was dying. I don't know if he believed me because he was short with me on the phone. Given our estrangement, I imagine that was to be expected. I was angry with him for not realizing the gravity of the situation. Dad had tried so hard to hang on for everyone and not show them the depth of his pain and deterioration. But, a nurse sees the truth. A daughter sees the suffering. Dad took his last breath when I was out of the room talking to my brother and I have to believe he knew that I wasn't there. People can and do choose the time and circumstances of their deaths. I have seen it hundreds of times in my career as a nurse. I have held the hand of people who had no one else to be there. I have hugged and held strangers who at the moment of their passing were closer to me than my closest friends or family. But, I wasn't there when my dad passed. I was talking to a brother who hates me. For some time that colored my thoughts and wreaked havoc with my emotions but then I realized that in an odd way, it was dad's way of at least bringing us a little bit together. And, it was his way of saving me from the pain of witnessing that ultimate moment from life to death. I know he was at peace. I know that in my heart and soul, so I accept that it might have been his last attempt at keeping some control in an uncontrollable situation. Since then, I have been preoccupied with my own mortality or lack thereof. When I think of how quickly the last twenty years have passed and how I may not perhaps, have much more than that time in the world, I am stymied. Life is short. I'm saddened that I no longer have a relationship with the brother I spoke of. I'm saddened at the loss of my youth. I'm amazed at the way time flies away when you are planning other things. There isn't any time to waste. I wanted to be an archaeologist or an oceanographer. I wanted to write stories. I wanted to experience so many things that I was never brave enough to try. Why? If one single second of my life had been different I wouldn't have what I have now but still, I wonder. Lately, when I am having a difficult time at work I have to laugh because I will always find a penny on the floor of the lounge or in my patient's room. Walking into chaos is always difficult and on the nights I just feel it can't get worse, there will be a penny on the floor. Dad used to always tell us when we found pennies that they were pennies from heaven. That's why we place them on his grave... I play silly games with myself such as saying, "Dad, if you can hear me, let me hear a crow." And then, of course, I hear one caw at the moment in question. Real or imagined circumstance, it makes me feel better. When I was a young nurse, I was an attendant at the death of a well-beloved person. I say well beloved because his family was all there and the death was both expected and accepted. We, nurses, were just there for support. At the moment of his death, another nurse and I witnessed a luminescent cloud of something leave his body and curl slowly up to the ceiling. I don't know if anyone in the family witnessed that. If so, they never spoke of it, but the other nurse and I looked at each other in both shock and amazement. We didn't really talk about it other than to wonder if that had been his soul. I will never know, but I have to believe my dad is in a better place, as cliche as that must sound. I have another brother whom I deeply love and respect. He is brilliant in so many ways. He contends there is no God, that afterlife is simply some sort of manifestation of energy. His explanation comforted my mother and really, it is all a matter of semantics because something happens which is beyond explanation. In my view, it doesn't really matter who is wrong or who is right, or even if there is a Heaven or not. If what we believe is strong enough to sustain us through life, that's OK with me. I'm not going rewrite this. This is my rough draft. This is how I feel. On this November seventeenth, I thought of all my brothers and mother and children. Although my husband doesn't talk much about it, he also dearly loved my dad and was there at his passing. Dad loved him as he did his own sons and told him so. Who comforts him? People don't have to say anything. I know when my husband holds me or pats my shoulder, he is saying so much more than he could ever say with words. Not long ago I worked two difficult night shifts. The first involved a patient who had gone to a routine doctor's visit only to discover that her baby had no heartbeat. She was to be my patient for twelve hours. She was in severe pain of cramping and contractions we had to induce so she could expel her dead fetus. She was still in the throes of doing that when I left in the morning. The next night, I had a labor patient who had lost her mother during the pregnancy. Her due date was November seventeenth. I was quiet that night but didn't speak of my own personal memories of that particular anniversary. She didn't talk much about her mother and I didn't press her, but at the moment of delivery, when she saw her baby, she burst into tears. I understood. Later, when all the equipment had been cleared away, she grasped my hand and burst into tears, with heaving, heart-wrenching sobs..." I want my mom!" she cried with enough anguish to hurt my heart. "Will you be my mom today?" Fighting to hold back my tears, I told her, of course, I would. Later that morning when I returned home and helped get everyone ready for school, in the middle of a conversation (or gripe session) with my husband, I was suddenly overwhelmed with emotion, and burst into tears..."I want my dad", I cried every bit as sad as my patient had cried out for her mother. I wasn't prepared for it. I never am. As my shoulders heaved with gut-wrenching sobs, and the tears fell, I remember saying to my husband, "I hate it when this happens." I guess being a nurse doesn't always guarantee one can control their own emotions. But, it was a good thing that it happened. That morning I finally slept. I miss you, dad. I want you to be here with us but not at the expense of you feeling the way you did. I honor you and I love you. I still daily review your voice in my mind so I won't forget it. And as much as you always said I needed to have the last word, I would give my life and everything I have for the privilege of YOU being the one to have the last word. I love you, dad...Night night... Love always, Martha
  13. Have Nurse

    Meet Me At The Wall

    Marlene was the first real friend I made in Waterville, Minnesota. A widow and a retired Registered Nurse with a cardiac background, she was one of the nurses who assisted in the first heart transplant in Minnesota decades ago. The day I closed on my house in Waterville, she was out watering her lawn. It was July, hot and sunny. I was just moving in. She greeted me warmly. I took an instant liking to her. She owned a dachshund she called "Bailey." Bailey use to belong to her daughter, but Marlene adopted Bailey under the threat of Bailey no longer being wanted. Any time I was outside working in the yard, or doing laundry, Marlene was outside too. We chatted at the garden wall, often laughing at the antics of the hummingbirds that would dive bomb us at the clothesline. Marlene hung the birdfeeder at the end of it. It was great fun! We'd share a cup of coffee and laugh a lot. We each had a yard with very old trees. She was on 6 acres. I was on less than one. When a big storm or windy day would occur in our area, we both lost a lot of branches and the piles were great in both of our yards. My cousin who visited on occasion to help me around my old Victorian house, often helped me pick up the branches for Marlene. She was advanced in years and had serious health issues so she was not able to gather branches. She did however, cut the grass on her riding lawnmower. When she had a medical emergency, she would call me before calling 911. That always worried me, but it worked out. At the end of a late shift at the hospital where I worked in a neighboring town, I would often get home quite late and tired. It wasn't unusual to have a plastic bag tied to my doorknob of my outer door filled with baked treats, homemade bars, brownies, zucchini bread, or some soup. In return, I would weed her garden or help shovel a walk way for Bailey in Winter so she could "do her business" comfortably in the snowy weather, or cook a meal for us. Any time she wanted to see me and speak with me, she would either call, or email me and say, "Meet me at the wall, " and I would oblige, always glad to see her. Marlene had a good outlook on life. She always was interested in what I had to share and she listened. She was the big sister I never had. She was a comfort to me after my mothers' death. She was so kind to me over the years I grew to love her and cherish the times we shared. The lunches, the holidays, even the hospital emergencies I had with her. I had left for Texas for a couple of years after I sold my house in Waterville. Upon my return, I learned from the person who purchased my home that Marlene was very ill and in a nursing home. I drove 2 hours one way to find her. I learned earlier that she had only possibly 2 weeks to live. She had a cat that was in danger of being put down as her family didn't wish to care for it. I sped to the nursing home, praying I would have time to see her. She was sitting in a chair, on oxygen. When I flew into her room, she was startled, staring at me, and then realizing who I was, she burst into tears and cried, "How did you find me? I thought I wouldn't get to see you..." Then she sobbed, catching her breath, "The doctor says only 2 weeks." I held her a while. We both cried. "Marlene," I said, reaching into my pocket. "I wasn't sure if I would be allowed to see you so I wrote you a letter. I would like to read it to you now." She was eager to hear it. Trying hard to choke back my emotions I began: "Dear Marlene, I don't have the words to describe how full my heart is right now. Cathy told me of your illness and circumstance. I did not want you to leave us, not knowing how much your love and friendship have meant to me. You were there for me when Mom died and your kindness toward me and Brinkley (my golden retriever now gone), has meant much! The word Friend, just doesn't seem to fit for such a sacred relationship. We had a 5 word phrase that you and I would say to one another: "Meet me at the wall." How I will miss that phrase and your voice. How I will miss our hanging out the linens on the clothesline in your backyard, the diving hummingbirds and the sparkling fireflies we watched together from the porch while eating ice cream on those hot Summer nights! Those cool crisp fall afternoons hauling dead branches to our bonfire while you watched and waved from your back stoop. You are closer to me than family. Remember that. I love you. So, when my time comes, and you're up there listening, when you hear that I am coming to the gates of Heaven, Meet me at the wall.... Marlene said those words with me, as I read the letter. I saw her one last time. She was very tired. It was Mother's Day Sunday. I did not wish to exhaust her so I helped put her to bed. The staff didn't mind. She closed her eyes and fell into a deep sleep. I quietly and slowly straightened out her bed linen, organized the items on her bedside table and straightened the flowers on the edge of her window. The tears began to flow. I wiped them away with the back of my hand. I gently kissed her cheek and whispered, "Don't forget. Meet me at the wall." A week later, I learned that while ambulating in the hall, she collapsed. EMS arrived too late. I made arrangements to adopt her cat and I still have Esther. Marlene's picture is on my bookshelf in plain view. I tell her I am taking good care of her kitty. Once in a while, as I watch the sun set in the west, I see Marlene in my mind and I say, "Don't forget...Meet me at the wall."
  14. TiaKay

    Till We Meet Again

    It seemed like it was going to be just another usual Sunday night on our med/surg floor where I work as a tech prior to starting nursing school in the fall. A 3-11 shift doesn't include baths, but if the patient is incontinent of the bowel, there's a good chance that a tech will change the sheets, bath the patient, provide a clean gown several times in the course of the night. This can be an unpleasant task; let's face it, being up to your elbows in someone else's bowel movement isn't very delightful, especially if it is the liquid, odiferous, potentially C-diff bearing stool that was the case with this particular patient on this particular night. However, I do my darndest not to shy away from these situations, as I can only imagine how difficult it is for the patient to be so limited and to need that sort of personal care repeatedly. As I was getting the linens ready and running some warm water in the sink while preparing to clean up the patient, I began humming a tune. I'm a singer in my out-of-the-hospital world, and I frequently get tunes in my head, which I sing or hum. As I came from the bathroom, the patient this night heard me humming, and began to sing the words with me. I asked him if he knew the whole song, and he said he did, so we started off together at the beginning. He knew me only by my voice, as he was quite elderly and blind as well. We started talking about songs we knew and loved, and before I knew it, we started singing some of our favorite numbers from the musical "South Pacific." I was joking how, now that I was older, I was going to be too old to play Nellie Forbush, but instead would have to play Bloody Mary. That naturally led me into the song made famous by that character in the show, and we were laughing by the end of the bedding change. He had no control over the illness that was ravishing his GI system, so I was in the room several times that night. We sang songs from "Carousel", from "Oklahoma", from "The Music Man", "The Sound of Music", all of those oldie-but-goodie Broadway shows. There was a 45 year age difference between us, but we both had loved all those songs and had them tucked away in our memories. What could have been a distasteful and smelly task instead became, for both of us, a delightful break in the monotony of the long shift? When at shift's end I came to get his final set of vitals and to help him settle in for the night, I told him I'd thought of the perfect song to end the night's songfest, a lovely tune from the World War One era entitled "Till We Meet Again". Now, while the song's lyrics are written for sweethearts, and that wasn't our case, it was still a lovely thought to wish each other well until we were to meet again. We sang it together, and I wished him a pleasant good evening. Two days later, I had to come into the hospital for an educational meeting for techs. I wasn't scheduled to work again until the weekend, and I usually exit out the back door to the employee parking lot. As I was completing a cell phone call, I stayed on the main floor planning to exit using the door by the ICU (I never go out that door on a normal basis.) Glancing into the ICU waiting room, I saw his family, whom I'd met earlier that Sunday night when they came for a visit. Going to them, they told me how he'd slipped downhill rapidly on Monday, and things did not look good. I had their permission to visit their dad, so I went into his room. He was on a respirator and was completely unresponsive. It was evident from looking at the vitals and other info on the machines at the bedside that he was very critical. I held his hand and quietly sang to him "Till We Meet Again" one last time, and left. It seemed a very fortuitous choice of exits to me; otherwise, I'd never have known he was in the ICU. The next day, his obituary notice appeared in our local paper. I cried a little, and yet, it was a comforting thought to know that on his last aware night of his 88+ years on this earth, he sang the old songs he loved so well, had talked about his beloved deceased wife of 60+ years, and knew that while he was in a difficult care situation with the diarrhea he was suffering, that he'd given ME the gift of his music as well. Rest in peace, Mr. W.; until we meet again.
  15. Ruby Vee

    It's Already Gone On Long Enough

    My mother-in-law had a stroke last week. Details are sketchy -- she's several hundred miles away and the daughter who lives closest, a mammography technician, knows just enough to tantalize my husband and me with some of the medical details, but not enough for us to get the full picture. She had either a right CVA or a left -- Rosita isn't sure -- and has either left hemiparesis or left -- again, Rosita isn't clear. What is clear is that she had a diminished level of consciousness and wasn't able to swallow. Did we think she should give permission for a feeding tube? Mamita is 89 years old. She's been institutionalized with dementia for nine years. No matter what we do or don't do, she isn't going to get better, her dementia continues to progress, and she hates living in the nursing home. When she first went there, she wore an ankle monitor because she kept trying to leave. She was in the memory care unit because Hurricane Katrina and the disaster that was New Orleans snatched away what remained of her clarity and functionality, then the Sheriff's department put her on a commercial flight and sent her off to live with her daughter in New England. What else were they going to do with her? She couldn't be left alone because she'd immediately try to go back to her house -- under water at the time. And letting her wander among people wasn't safe -- she tended to attack anyone who annoyed her. Mamita was always easily annoyed. Nine years in a place she hated, and my first thought was that the stroke might offer her a way out. If you ask anyone whether they'd like to die with dignity, or whether they'd like to be kept alive on machines even if there's no hope of recovery, no one opts for the machines. At least, they don't if you give them some clear idea of what you're asking and ask them before they get to the point of being awake, afraid to die and facing the point where the only hope of keeping them alive IS the machines. Why, then, do we even offer the feeding tube to the family of an 89 year old patient institutionalized with dementia for nearly a decade and without any hope of recovering? I'm not sure how serious the stroke turned out to be -- she has hemiparesis. Even if there was a chance of recovering from the stroke, she won't recover from the dementia, and the dementia makes it all but impossible for her to recover from the stroke. How do you get her to do the exercises that will strengthen her, how do you teach her how to use a spoon or dress herself or use the toilet with one hand? The stroke took away, and the dementia makes it impossible to get it back. Mamita got the feeding tube. Her middle daughter, the one who lives farthest away and has always wanted the least to do with her insisted that she couldn't live the rest of her life knowing that "Mamma starved to death." Why is it always the ones who live farthest away, who have the least to do with the patient while they are able to interact and who know the least about the situation who always draw the line in the sand and insist upon "doing everything"? Why is it that they don't listen to the son who knows? This isn't "doing everything." It's just prolonging her death. It's already gone on long enough.
  16. Hospice: A New Direction Now I wasn't just stepping back into a direct care role on "the floor" of Med/Surg. No, I took a role as a field nurse in an area considered taboo by even the best nurses. Most nurses cringe when hearing that name with the usual remark, "I could never work there. It takes a special person to work in that area." Yes, I accepted the job and began working the first week of May 2007 in none other than Hospice. I chose Hospice because it really was nothing like what I had worked in the past. I thought it would get me out of the hospital walls and the headache of management. I had worked in community health nursing in the past an enjoyed the autonomy it allowed. The time for private thought and traveling farther than the bathroom or the cafeteria was oddly appealing to me. It even seemed weird to say but I thought after working in management I owed it back to the direct care nurse to put my hands to the grindstone, a philosophy I appreciated as a floor nurse and held myself to as the coordinator. I looked forward to giving of myself to my patients. What I have gotten from my patients, however, has left me often feeling like the receiver instead of the giver. Hospice: A Never-Ending Experience In a nutshell, the Hospice philosophy is to provide the patient with the best quality of life for as long as the patient is alive. That sentence doesn't give Hospice justice, but this article isn't about what we as nurses can do for the patient. This article is about what the nurse takes away from the experience. Call me the eternal optimist, but in a world where gray clouds loom and joy gets robbed with every heartbeat, I believe God provides a silver lining. In the realm of a dying person, there are always treasures to uncover. I never imagined how a job taking care of others in their greatest time of need could give back so much. Sure, every day I see a patient and I am reminded that my problems are not life ending. Every moment helping them when they deal with pain or breathing difficulty I thank God my problems are life changing, not life-threatening. Every time a patient dies I know I am blessed to be alive. Patients Share The Greatest Wisdom I am amazed when out of the crackling voice of a dying patient comes words of clarity, truth, and strength. When we are not treating, comforting, and answering questions; when our mouths are shut and our ears are open, it is the patient who usually has the greatest wisdom to share. In providing the best quality of life to a dying person, it is that person who has spoken so much into my life. I find myself driving away from the home speechless at the boldness and profound words that pour out of them. In eight months I am honored that my life has been blessed by my patients. I honor the wisdom, knowledge, and strength of a man, woman, or child who faces the greatest unknown and has made peace with their life. They get it. They understand it. If only we, the non-terminally ill nurse, social worker, therapist, and the doctor could learn to live with that passion and boldness. If only we could learn to live like we were dying. It is that knowledge and wisdom when we listen, that is worth dying for. T.J. Bristle RN BSN CLNC
  17. Justhere

    To Terminate or Not to Terminate

    This is the story of "Baby", the nickname his family gave him so affectionately. He was born in the month of September 1995. He was born with Myotubular Myopathy; he was very "floppy" and had difficulty breathing on his own. He was immediately shipped to the local Children's Hospital and admitted to the NICU. It took the doctor's months to figure out that he had Myotubular Myopathy. When they told his parents the grim prognosis, they painted an ugly picture of his future, one of the hospitals, ventilators, feeding tubes, zero communication, no movement and a very short lifespan of one year. The doctors suggested that he should be taken off the ventilators and allowed to die. His mother asked, "How long will he live off the ventilator?" The reply was "Minutes, hours, days, weeks, months, or even longer, there are no guarantees on how long he will live." After hearing this, his parents knew what they would have to do, his parents told the doctors, "If God wants him, he'll take him on or off the ventilator until then he stays on it." Baby stayed in the NICU until he was almost a year old. Their son now had a trach which was attached to a ventilator, and a Mic-key button to feed him by. They had to learn to care for their son, how to feed him via the Mic-key button, and all his medical equipment that would help sustain his life. They also now had nurses coming in and out of their home 20 hrs a day to help take care of him. Baby continued to grow and he made it past his first birthday. He was in and out of the hospital two to three times a year with respiratory infections. But he still continued to grow and amaze the doctors that had no hope for him past the age of one. I came into his life at the age of 3. At this time he only had a few words in his vocabulary and did a lot of pointing to get his point across. At age 6 he enters kindergarten already knowing his ABC's and could count to the number 10. OH! Also, he was bilingual since his parents spoke to him Spanish and his nurses spoke to him in English. So he now had a very broad vocabulary. He was able to sit up, breath on his own for a few hours at a time and play video games. He amazed his teachers throughout his school years, who didn't know what to expect of this child that came into their classrooms, driving an electric wheelchair, hooked up to a ventilator, with a nurse in tow. The kids at school fell in love with this little boy in the wheelchair, with the long brown eyelashes. He even had a girlfriend, anytime she went to the store and found something with Sponge Bob on it she begged her mother to buy it for him. At age 8 he received a "Make-A-Wish", where we thought we (his parent and I) had him talked into asking for a computer for his room. The day the "Make-A-Wish" team came to ask him for his wish, which he had to say out of his own mouth, I was absent with my own child in the hospital. Baby and his mother made a visit to the hospital and that is when she announced: "We are going to Disney World." No matter what we had thought, he let his own wish be known and we went to Disney World. It was a magical week, where he got to be a kid and have a real vacation. In August 2006, Baby went into the hospital with a bad infection of the Kidneys. I received a call from his mother that morning. He had already crashed twice and was brought back. When I arrived at the hospital he was in a semi-conscious state in the PICU. I visited with him and his mother for an hour, I wanted to stay longer but only two people could be in the room at a time and I didn't want to take too much time away from his father. His mother talked about not wanting to see her son suffering any longer but she did not want him to go either. This family was faced with the decision to terminate or not to terminate life support again. They decided to continue with life support but if he coded again they would let him go. That night I got the call, Baby's life had ended at 10 years, 11 months and 18 days.
  18. phellandrn

    A Nurse's Thoughts On Death And Dying

    My Brother's Nurse: By Paul, RN I used to think I knew all there was to know about death. Working in the intensive care unit and emergency department presented seemingly endless opportunities to interact with patients who were about to die as well as consoling their grieving families. For instance, I have witnessed a cardiac arrest sneak in between the syllables of a patient's final unfinished word. Many patients have died underneath my arms after prolonged CPR failed to resuscitate them. I have hugged countless family members as they grieve the news that medicine could not keep their loved ones from slipping away. With each new experience, with each death of a patient, my comfort level in dealing with loss climbed. Before I knew it, I found myself bathing in new-nurse hubris, or at least that's what I call it now. I prided my ability to maintain composure in the face of heartbreak. I, the "seasoned" nurse of a year and a half, knew what to say and do to comfort people. However, no amount of hospital experience could have prepared me for the knock at my front door at 12:06 on April 10th 2010. I was out of breath, anxious, and afraid when I opened the door after being woken by the pounding sound of fist on wood. Two police officers identified themselves as members of Banning Police Department Detectives and asked my mother and I if we were Philip's family. Immediately my heart sank, my breath stolen by the realization that only few situations in life would require a police officer to wake a family up at midnight. Unable to tolerate another second in suspense I demanded they tell us what this was about as they were let inside. "I am so sorry to inform you, but Philip took his life around 4:00PM with a shotgun while shooting with his friend". I remember falling to the ground as if I no longer had legs. I started shaking, crying, and begging out loud to tell me this was a mistake. I always associated death and dying with my job. Death, however, had followed me home. As I lay there attempting to appreciate the magnitude of the situation, I could have never pictured that in the coming months and years I would witness a family completely unravel in the face of catastrophe, yet somehow find the strength to try and put the pieces of their lives back together. This is was no longer a patients' family that needed me. This was my family. As I sat on the couch with my mother in our front room listening to the detectives walk us through my brother's final day and moments, my ability to focus was made impossible by the mixture of fear, confusion, and sadness. At one point my mother interrupted the detective and asked "Is this how God answers prayers? I prayed for my child's safety, for Him to watch over my boy and this is how He answers my prayer?" I remember that statement being the only thing that could have increased my fear and anxiety further, for this was a lifelong devoted Christian woman, someone who I had never seen question her faith. With their jobs finished the detectives wished us well and were on their way. My mother went upstairs in an attempt to sleep if at all possible. I sat at our desk downstairs for the next few hours searching my heart and soul attempting to understand what would drive someone to go against the most primal of human instincts that we all posses: survival. What happened next would redefine my perceptions of grief and sorrow, and show me that I only understood the surface of the depth that pain can exist in the human heart. I turned in my chair at the sound of a door opening upstairs. I sat and watched my mother walk down the stairs, pause with three steps left, and look up at me. Her face was bright red, tears flowed, she was shaking, and barely holding onto the bannister. I walked over and hugged her as she began to cry. Words cannot describe the pain radiating from her body and voice. She began to cry out "Mama!" as if seeking her own mother for comfort. As I held her, I thought about all of the patients I had ever held as they cried over lost loved ones. My heart had sustained the emotional challenges that I have witnessed in the hospital. However, when it was my family's turn, when it was no longer a patient's mother but my own, I remember distinctly the moment my heart's defenses were insufficient. My heart had broken. I stood on those stairs for what seemed like an eternity watching the strongest person I have ever known become the weakest. We buried my brother Philip Helland five days later at the age of 25 years old. I used to think often of the family members of patients that have died. I wondered what it was like to lose a brother, father, mother, wife, friend, uncle, or aunt and what life after the loss would be like after the acute situation was over. What the grieving process truly like for them? This is something I have now experienced first hand with my own loss, with my own family. Over the next few months we would return to work and try to resume the lives we lived before. We have learned to pick each other up when one of us has a particularly rough day and have come to rely on each other's reciprocity when in need. It has now been a little under four years since Philip passed away. Even after all that time, I am amazed at the continued lessons in grief his loss has provided. I sit here in my second year of medical school and reflect on all the ways I've been taught to deal with dying patients and their family members. I remember being told that it isn't a matter of what you say, rather the simple act of trying to say anything is what counts. Sometimes all you need to offer is "presence" is another jewel passed along to new grads. One of my favorites is to never, ever tell a patient that you "understand" what they are going through. For example, to tell a patient that you "understand" why they are crying upon hearing a cancer diagnosis implies that you've not only been diagnosed with the same exact type of cancer, but also under the same circumstances as the ones the patient finds themself under. At best we can only humbly admit that we simply cannot imagine, that we really have no clue what they are going through, but that we will be here to help them in any way possible. Having now been on the receiving end I can attest that these are excellent tools. Yet, missing from my education and work experience thus far were the long-term effects of loss, the daily struggles that family members face. Hospital work placed me in the acute phase of death and the grieving process. However, the day-to-day struggles months and years out are something that must be experienced. For instance, each day I wake up and I reflexively think of my family. I hope that wherever they are, my remaining brothers are safe and taken care of. I close my eyes, picture my mom, and hope that her broken heart continues on the road to recovery, wherever that may lead. I try and picture Philip doing something goofy that he used to do. I've learned through trial and error that trying not to think about someone is a lot harder than picturing them in happiness, the latter being far less painful. Some days you wake up with an inherent sadness that necessitates a hard swallow in order to function throughout the day. Other days, the accumulation of those hard swallows is too much to bear, especially when you encounter a trigger. My triggers often surprise me. I will be driving along and a song on the radio will come on that reminds me of Philip. I will travel to a new destination that I know he would have enjoyed. I'll eat at a restaurant that I know he would have frequented. I try my best to picture him in these situations enjoying them they way I know he would, but most of the time the following thought is the terrible realization that he will never get to do, see, or taste the things I picture him doing. Regardless of the trigger, the subsequent feeling is always the same: a very visceral, sharp pain in my heart followed by a loss of breath. Each time I am uncertain if I will have the strength to recover. I usually take a long deep breath and try to focus on what I'm doing. Occasionally I find myself without the strength to do this, to keep going. It is then I am faced with the fact that my heart needs an outlet and I allow myself to cry for my brother. I would guess I run into triggers every other day, sometimes multiple times a day. I've learned that it is vital to allow myself to mourn and weep when they become overwhelming. The final aspect of loss I failed to appreciate is the inevitable hardest two days of the year: his birthday and death anniversary. As each day approaches I try to prepare myself for anything my family may experience so that I can be there for them. Maybe it's a byproduct of being a nurse, but it's much easier to care for others and anticipate their needs as opposed to your own. When he first passed away, I put on my nurse hat and compartmentalized so that I could be an effective caregiver for my family. I've learned to talk about how I am feeling with greater frequency nowadays. It remains a challenge for me to allow others to care for me without feeling like I am inconveniencing them or acknowledging that even I need someone to care for me despite my protests. Even a nurse needs a nurse from time to time I suppose. Naturally I've been asked what the hardest part about losing a brother has been. In all honesty, it's not that Philip died and is no longer with us. I have learned that death is as important as life is in the grand scheme of things. When the limitations of medicine show their face and suffering is overwhelming, a peaceful death is one of the most compassionate things you can offer a patient. I would guess most hospice workers would understand this concept. For me, the most painful part of losing my brother was not being able to be with him as he passed away. I am grateful that he no longer suffers from what was tormenting him, but the feeling of loneliness he must have felt is an overwhelming, unbearable concept for me to comprehend. I would do anything for the opportunity to be my brother's nurse. To sit at his bedside and listen to his story, to hold his hand and hug him, to remind him how wonderfully special he is, to alleviate his loneliness. Knowing Philip, he would hit the call light just to annoy me....
  19. madwife2002

    Death came to visit

    Death came to visit Friday, it was not kind, and it was not peaceful for my friend's mom-it was hard, she struggled so much, her mind was ready, but her body fought her to the bitter end; causing trauma to her loved ones who stayed by her side so she did not die alone. The family had discussed end of life choices, and treatment was stopped on Tuesday, with the only intervention being pain medication. Death is still a taboo subject that many of us prefer not to discuss. Why is this? Unless you work as a healthcare professional, the clergy and funeral directors, many people are not able to talk about it freely. As a nurse who has been with many patients as the end of their life, I know you cannot prepare their loved ones for the final end. You cannot say that it will be peaceful, you cannot give a timeline and you cannot promise how it will be because you really don't know. There are relatives who have no clue about what their loved one wanted. There is often no discussion about end of live choices. I have been fortunate to be with my sister and my mom when they breathed their last breath and it was peaceful, calm and a relief that their struggle was over. I have been with patients who have passed away peacefully without pain, without struggle and without suffering. I have also been with patients who have fought to the bitter end, every last breath being a struggle for them. It was like something from a horror movie only it was real life. My question is why? Why do some people have horrible deaths and some people go quietly. It certainly doesn't pertain to how they lived their life; I can vouch for that with my own eyes, experience and knowledge. My mother was a feisty firecracker of a woman who fought for everything in life, never gave in to anybody and would never hold her tongue. Yet her death was one of the most calm, peaceful I have ever experienced. When somebody passes what determines if it is peaceful? What would determine if death is going to be horrible? Is planning important, should patients and relatives make known what they want near the end of life? You still cannot guarantee that death will be peaceful, however everybody involved knows what their loved ones want. Is it the environment they pass in? Can we choose where to die? Hospice is a wonderful environment, where the nurses, aides and doctors are amazing. I have never seen such caring individuals. When my mom passed many years ago they were amazing, I will never ever forget the kindness my mom received and how supportive they were to my husband and myself. The atmosphere was incredible in a hospice where everything is available for support. Nothing was too much trouble; nobody seemed rushed or didn't have the time to spend with her. Hospital can be a frightening place for many people, yet many will die in the hospital this year. Some expected deaths and some unexpected deaths. Relatives can add peace or trauma when their loved one is dying. The circumstances of impending death play a huge role for end of life decisions. Is the hospital environment a good one for a peaceful death? Yes it can be. It can also be a very traumatic experience. How many things can contribute to peaceful versus traumatic-who or what determines the definition? Hands up! How many of us nurses have witnessed needless interventions, pain and suffering? How many of us have experienced relatives prolonging life as long as they possibly can? Does this add to the trauma of their dying? End of life discussions can be very difficult; but it shouldn't be; as it is something we are all going to experience as our only guarantee in life. Many people do not have a living will. Many people do not even understand the terminology 'Living Will'. It makes no sense to them, although we as healthcare professionals are much better at promoting living wills. Even with a living will there can be struggles to make sure your wishes are followed, but without one relatives can fight and disagree with each other about what they want. Clear precise instructions can at least highlight your choices helping relatives to make better decisions on your behalf. In 2007 only 41% of the population in the United States had a living will. In 2009 President Obama made it more popular by publically talking about his living will, saying it is a sensible choice. In 2013 only 1 in 3 people had a living will, 32%, Findlaw.com In March 2016 "American College of Emergency Physicians' stated that two thirds of Americans don't have a living will! Question of the day-Do you have a living will? Or are you part of the 2/3rd's that don't have one? Less Than One in Three Americans Have a Living Will, Says New FindLaw.com Survey http://newsroom.acep.org/2016-03-21-Nearly-Two-Thirds-of-Americans-Dont-Have-Living-Wills-Do- The living will needs resuscitation For young and old, it's wise to have a living will to state health-care wishes - The Washington Post
  20. detrelibre

    Letting Go of A Loved One

    I'm in pain, mama. My body is failing me. I've lost my ability to speak. The hole in my throat helps me breathe - the most basic bodily function vital to our survival. The nurse comes in when the blue number on that monitor over there starts falling - he'll know that means that in some way the delivery of oxygen to my blood cells is hindered. My body constantly pulsates with pain, and I can't let you, the nurse, or anyone else know that. So I lay here, lost in the haze of what used to be my mind. Remember what the doctor said? Massive intercerebral hemorrhage. A pipe in my brain burst and the blood flooded and damaged a lot of what was inside. Hearing you sob for me was painful enough - but hearing you cheer me on with hopes that I will somehow get better is gutting. The doctor asked you to make a decision of what should be done if my heart were to stop. You chose the route that would mean everything possible would be done to keep me in this world. The nurse smiles kindly when he talks to you in the room. But behind his gentle smile I can see the sorrow. He feels deeply for you. I can see him taking our pain and making it part of his own. He turns me, he sets up my tube feeding, he cleans me when I'm wet. He smiles and talks to me knowing I can't respond. He stands by me when I have one of my seizures, ready to intervene if it's one of my big ones. You ask him if there's any chance I'll recover. That question comes from a desperate place in the mind - one that subconsciously knows the painful truth, but does not yet know how to accept it. The nurse pauses, looks down, looks back up at you. I can see him hastily sifting through the words in his mind, trying to find the most gentle arrangement to say to you. He imagines his own mother asking that same question should he ever suffer such a debilitating diagnosis as mine. "I'm not sure," he says almost in a whisper, "right now we should take things day by day". You thank the nurse for his answer, but somewhere you're not satisfied with it. Letting go is hard. Remember when I was six years old and you and dad taught me how to roller blade? You took me to get a shiny black pair of roller blades and watched and laughed as I ran to the checkout counter. The driveway was our practice spot, and my knees wobbled and shook the first time on my new skates. You told me I should let go of your hand, and I couldn't imagine doing it. Your hand gave me safety, it was the only thing between me and my inevitable demise on those roller skates. But deep down I understood that if I didn't let go, I would never be free to skate around our sun lit neighborhood. And when I finally let go of your hand, I truly understood that when you asked me to let go, it was because you loved me. I know you want me to stay close to you, mama. But I want you to know that right now, all of me hurts. Every pressure sore, every infection, every time I hear you begging and praying for things to go back to how they were. I'm still that boy you taught how to roller blade, except now it's your turn to let go.
  21. tachybradyRN

    My Brother James

    I can remember countless hours of video games (he'd decide on one as his favorite, and play it incessantly for months, encouraging the family to join him), the fights, the talks... but what stands out most is the fact that he always looked up to me. I specifically remember a day when we were very young... I was perhaps ten, and he, seven. We were sitting on the bus on the way home from school and he showed me that his knee was bleeding. I wrapped his knee in my skirt and applied pressure to stop the bleeding, and when we got off the bus and began walking towards our house, he told me I was the nicest nurse he'd ever met. Little comments like those made my day, since I was trying so hard to be good to him. We had our fights, of course, but for the most part, we were quite a team. Throughout middle school, he struggled with his social awkwardness. He started getting into fights at school, which he never understood because he felt he was defending himself against his tormentors. In seventh grade, he was placed in a special school for behaviorally-challenged children and absolutely hated it there. His medications caused him to balloon up to almost 260 lbs, which was very heavy, even on his 6" frame. He developed severe acne, became very argumentative, and fell into a severe depression. I tried very hard to be supportive of him, but sometimes I faltered. It was hard for me, as a teenage girl, to sit and listen day in and day out to his banter and arguments. Everything changed when my brother was accepted to his dream high school, a private school about two miles from our house. He was able to get out of the school he hated so much, slowly come off his medications, and finally begin to have a chance to fit in. He discovered his love for wrestling, tried out and made the team. Over the course of his freshman year of high school, my brother worked out tirelessly and religiously every single day. He made friends, lost almost sixty pounds, was told by his English teacher that he should publish his poetry, and even started dating his first girlfriend. Things seemed to really be turning around for the best for him! Tragedy struck my family on the night of July 20, 2005. My brother had been at a summer football camp session in preparation for trying out for the team in August. He'd just made varsity wrestling and was on top of the world! I remember him running out the door to jump on his bicycle and ride off to Trinity that afternoon, and I told him I'd cook him some buffalo wings (one of his favorite foods) when he got home. He gave me a big hug, picking me up and swinging me around before taking off. Little did I know that would be the last big bear hug he'd ever give me. On the way home from his school that night, at approximately 8 PM, my brother was crossing the street on his bicycle and was hit by a car traveling almost sixty miles per hour. His body was flung almost one hundred feet before hitting the ground, his bicycle twisted and tattered. A neighbor who lived nearby called 911, and my brother's best friend (who lived around the corner and had heard the crash) called our house to let us know there had been an accident. I didn't drive at the time, so I sent my mom, who had just gotten home from her 12.5-hour shift as a nurse at a local hospital, up to the high school to see what had happened. By the time she called me, around midnight, I had been sitting on edge for hours wondering if he was going to be okay. She called me with tears in her shaky voice, telling me that it didn't look good, and we should come to the county hospital, a few towns over. My brother, she said, had been admitted to the PICU. My then-boyfriend packed my sister and me, shaking, into his car and drove to the hospital. He waited outside the PICU as she and I entered, not knowing what to expect. There lay my brother, 6'0" tall and 206 pounds of muscle, flaccid in the bed. He was hooked up to a ventilator and a heart rate monitor, as well as an ICP monitor. I didn't know what any of this equipment was at the time; I only knew it didn't look good. I ran over to him and flung myself on him, crying and holding him as close to me as I could. His face was so warm, his tousled curls so soft as I ran my fingers through his hair. There was my brother, who was finally growing into the handsome, athletic, intelligent, incredible man I always knew he'd be... laying on the bed in a coma. He looked so peaceful, and yet.. so empty. I couldn't believe the situation unfolding was real. Everyone kept saying, "Oh, you never know.. he could pull through", but somehow I knew it wasn't that simple. One of the PICU nurses came over, looked me in the eye, and said, "You need to talk to him. Let him know you're here." I looked at my brother, knowing full well that he would never want to live through the accident if he would be even a fraction less of the athlete he had been. I took a deep breath, and whispered in his ear, "James, if you need to let go, you go. I'll stay here and take care of everyone." Somehow, deep in my heart, I knew he wouldn't make it through. My little brother died the next morning, two days before his fifteenth birthday, at approximately 7 AM. My heart broke with that knowledge, but somehow I pulled myself together, knowing how devastated my mother would be. I spent the next two months of my life trying to deal with my own grief and help my parents and little sister cope with theirs. At some point during that time, I realized that I wanted to spend the rest of my life doing what I always tried to do for my brother and my family: help people return to health and live to their fullest potential. When I made that decision, I felt an acceptance come over me, as though I'd found my life's calling. I knew then and there that I would be a nurse, and although I took a few years dealing with my grief and pulling myself together, I have been pursuing that dream since September 2007. I know how proud my brother would be, and I know he would tell me I did the best I could in caring for him. He taught me that although some people can't be saved, they can live on forever in our minds and our dreams. I will always love him and cherish the relationship we have and remember that he always told me to give everyone a chance. I see him in the eyes of some of my younger patients, and I realize how much more there is to a patient than just the person lying in the bed. Every time I look into the eyes of my patients, I see their families, their wives, husbands, daughters, and sons, mothers and fathers; I see my patients for who they are as PEOPLE, not just cases I have to deal with. I try my best to help my patients become open to communicating their feelings, discussing their lives, and sharing their worlds. I am so grateful for the short time I was able to spend with my brother, and I know that in my toughest moments, he is behind me, cheering me on. I see him in the eyes of the children I've met, the men unsure of themselves, the women pining for their sons. I see him everywhere, and I know I'm meant to let him live on through me and to help me be the best nurse, and person, that I can be.
  22. andre

    Lather, Rinse, Repeat

    So my usual morning routine goes like this: print my report sheet, and start putting in my little boxes for med times, assessments, etc (yes, I'm the OCD nurse), while I wait for the night nurses to be ready for report. Get a face-to-face report from the off-going nurse(s). Then we do walking rounds, so we can meet the patients....and make sure they're still breathing (true story: not long ago in walking rounds we discovered a palliative patient had just died...imagine if we had skipped rounds and I hadn't gone to assess her first?). As soon as I've met my patients and made sure there's nothing that needs my immediate response--patient crashing, in pain, etc--then I go back to my computer. At this point, I take a good 20 minutes to look at the last set of vital signs, any a.m. labs that are back, and the last nursing note. By this time I feel "ready" to decide who I need to see first and start passing my meds. And it's probably 8 am by now. Generally, I find it helpful to have looked at vitals and labs before pulling meds, so that I know if the patient's BP is low enough to hold meds, for example. Or I know what their K+ is before I pull out a big dose of Lasix. So anyway, I pull my first patient's meds, and do my first assessment when I go to give them. Lather, rinse, repeat. I usually pass all my morning meds and cover fingersticks before sitting down to document any assessments. Of course, by this time docs are rounding and writing new orders, too... So. Back to my patient. After hearing in the report that he's full of cancer, we go to see him first and he needs pain meds. So right away I pulled his Oxy and gave it. He said to me, "you girls are soooooooooooo nice". About a half hour later, after seeing my next patient, I went to re-assess his pain, and he was much more comfortable. I asked him if he needed anything, and he said, "oh just a few ice chips if that's ok". I said, "Of course" and then suggested some ice cream. His whole face lit up, and he asked, "I can have ice cream?" Oh lordy, you can have anything you want. As far as I'm concerned, when you're dying of cancer, ice cream for breakfast is not only ok, it's medicinal. So I went to see all my other patients, gave meds, sent folks for Xrays, talked with some docs. Then I went to see him again. With an ice cream in hand. He beamed from ear to ear. All day he kept thanking me for being so nice. Honestly, he was an easy guy to like, grateful for the most trivial of things. One of the things I like most about palliative patients is that the focus really is on the small things--fluffing pillows, backrubs, clean sheets, cool cloths. Pain meds. Ice cream. Lather, rinse, repeat.
  23. jeastridge

    Hospice: What You Don't Know Can Hurt

    I took a seat on the kitchen chair that the daughter brought in. Pulling it up to the double bed, I tried to get close to my patient, a woman nearing the end of her battle with gastric cancer. She tried to return my smile, and I squeezed her hand as I introduced myself. Her daughter circled around to sit on the bed beside her mom. She opened the conversation by saying, "Mom's been having a pretty rough day today. She is just so weak." As we talked, I heard the bedroom door push open further. I recognized her son, Joe, from our brief introduction outside the house and nodded to him even as his sister continued to tell me about her mother's long battle with cancer. Easing past me, he took a position just behind me, standing against the wall with his arms crossed. He didn't say anything but I could feel some tension enter the room with him. When there was a pause in the conversation, I looked back and invited him to join our conversation by asking the question, "So have you ever had any experiences with hospice?" He answered "No" and didn't elaborate further. I tried again, "I hope I can help you, your sister and your mom understand what hospice is and how we can serve your family." Emotion quavered in his voice as he said, "I'm not sure hospice is what we need." I tried to assess whether or not to continue the conversation outside the room, but I could tell from his sister's exasperated sigh that this was familiar ground; they had fought this battle multiple times and the wounds were still fresh. He spit out the words,"All I know about hospice is that they give people drugs until they die." He stiffened his back against the wall, as if trying to hold the house together with his effort. Consciously relaxing my body language, I turned to face him, offering him my full attention with open posture: palms up, feet on the floor, neutral expression. I reminded myself that he spoke with anger that disguised grief and loss. He spoke words pregnant with the fear of giving up his mother, of letting her down. He told me about the diagnosis six months prior, followed by surgery, then chemo and complications. He said the doctor told them the treatments were no longer effective. His mom softly interjected, "Son, I heard that doctor say I don't have long left." He shook his head. I could tell he felt defeated. In his mind, accepting hospice would mean giving up, giving in. This picture of conflicted emotions presents itself repeatedly in hospice settings. As professionals, we struggle to appropriately address the concerns people have about hospice. Each situation is different and requires sensitivity, creativity and discernment. I paused before stating gently, "Hospice doesn't do anything to shorten life or to prolong life. We simply accompany people on their journeys and work to relieve troubling symptoms that might come up along the way such as pain, shortness of breath, restlessness, anxiety, etc." He turned to face me and I went on to explain as simply as I could some of the basic principles of pain management. Our conversation rang a bell in my spirit that reminded me again of the sacred duty we have as professional hospice nurses with a powerful arsenal of medicines and interventions at our disposal. We have a lot of freedom in practice; we have earned the trust of medical professionals. Patients and families need to have the confidence that they are doing the right thing in how they use medication. A large part of this process is helping families have appropriate education and expectations of what can be accomplished. For example: complete pain control is a goal but sometimes cannot be accomplished without excessive sedation so we must work together to figure out what is important to the patient. Helping all team members understand the plan and its implementation can help to eliminate conflict for even the appearance of over-medication threatens the confidence and trust we all value. Mindful of the import of what I was telling this family, I reinforced the teaching about our 24-hour availability. "Call us any time," I told them. "That is what we are here for. And if you need us to come out, even in the middle of the night, we will do that, too." Being available and willing to respond to families' needs goes to the true heart of hospice nursing. For we cannot simply teach them, check it off, and then expect perfect comprehension. Having that phone number is gold. It helps sooth frazzled nerves, allay mental fatigue and overcome simple ignorance of bodily processes. We took a break from our conversation to notice the cat that jumped up on the bed, purring and settling itself neatly beside the patient's hip. We all laughed a bit and the patient reached over to rub the cat's neck. The daughter spoke next and said, "What I think bothers Joe the most is giving up. We have been trying so hard. We have done everything right. Why isn't it working?" I stopped cleaning my stethoscope and held it quietly in my hand as I told her, "Hospice is not about giving up. It is about changing goals. Signing up for hospice care indicates a change in focus-almost an "about face"-looking toward quality vs. quantity of life. It means that we continue to do plenty, but just different things than we do when pursuing life-extending therapies." She and her brother nodded that they understood and I continued to explain more fully, "While chemo, radiation, transfusions are rarely on the list of considered therapies during hospice care, there are times when they do fit because they help address comfort care needs. Also, at times a few of our patients improve temporarily as the complications associated with treatments ease. Sometimes there appears to be a sense of psychological relief after the decision for hospice is made. We always retain the knowledge that there is an opportunity for a miracle. Being in hospice does that mean that a patient cannot be healed. Occasionally, some patients live on and are discharged by hospice as their condition improves." Joe walked around the bed and as his sister scooted over, he joined her sitting beside his mom. Taking her hand he said, "I just want to be clear that we will only do what mom wants. We don't want you all telling us what to do." His change in posture and position told me that he had really entered our conversation but his words communicated his strong sense of protectiveness toward his mom and a long tradition of fierce independence. I acknowledged his words with a nod and noticed his mom indicating she wanted a drink. I reached over for the sweating glass of ice water that rested on the beDside table, and adjusting the straw, offered her a sip. "You are so right, Joe. The patient and the family remain in control. We are here to serve your mom and your family and to advocate with the other treatment partners. We will try to listen carefully and follow your mom's desires. Each person faces death on their own terms." "Ok. So what if we decide to sign up today and then change our minds?" Joe lobbed his final volley across the bed with force and conviction, as if daring me to answer. I smiled as I answered, "It is possible to revoke hospice. It is important for patients and families to understand that hospice is not always the correct option. Even with the paperwork signed, there is no permanent commitment. You all can change your mind if a new therapy becomes available or if you simply decide you are not ready. "I want to rest now." Their mom dismissed us with a gentle wave of her hand. I quickly finished up my assessment, and we shuffled out toward the kitchen. Leaving last, Joe flipped off the overhead light and blew a kiss into the dim room. Hospice-What-You-Dont-Know-Can-Hurt.pdf
  24. Unaffected by the waves slapping against the sides in a timeless hypnotic rhythm, we continue onward on some mysterious journey my mind has chosen to make me aware we must absolutely take. I am warm. I am content. I am happy. What I am NOT, is afraid. In serpentine-like slow motion, we follow dad into vignette shadows of dusk on a winding path atop the breakwater toward the setting Cape Cod sun. The air is clean and a light breeze kisses my neck as tepid wind whirls tumble past. I am acutely aware of the sea salt marshy scent, and the hauntingly comfortable sound of a far distant foghorn. The setting suns' reflection tosses silvery pink orange shards of light our way. I remember as a little girl feeling so safe, warm and protected by daddy. All those things I feel in my dream. Strolling one behind the other, encompassed by the magnificent surroundings, I follow my parents along the jetty, We come to a full stop like ancient mariners surveying far away destinations. Dad turns to face my mother and me. He pauses briefly, meeting our eyes with his and then raises his hand in a silent wave. In this mind travel I am not confused; simply puzzled. Mom and I are now side by side. Dad mouths a silent goodbye. His beatific smile warms my heart and I am neither sad not surprised when he turns to continue onward toward the sunset. Mom and I clasp hands and watch him walk away until all we can see is the sweetly descending star flecked night sky. All I can think is that we will all be ok and he is safe. I love you dad. It is not the first time I have had a prophetic dream, but it is the most vivid. When I awoke I felt strangely peaceful. I couldn't recall the last time I was so relaxed and stress free which is a lot to say for a busy mom and nurse. Often dreams fade to some long lost memory bank. Too many times, they are lost forever. For some reason I knew I would never lose this dream and immediately went downstairs to share the details with my husband. Not long afterward, my parents gathered the family together to share that dad had been diagnosed with a terminal illness. Though I had been a nurse for more than twenty years, I had never heard of the condition. All I knew for certain was that I hated it. Pulmonary fibrosis is an incurable lung disease of unknown etiology consisting of scarring of the lungs. Gradually air sacs in the lungs become replaced by fibrotic tissue. The tissue grows thicker as the scar surface increases, which causes an irreversible loss of the tissue's ability to transfer oxygen into the bloodstream. Not a mainstream media illness, it interested me to note that one prominent sufferer of the malady is Jerry Lewis. Not much is known as to the why and how this debilitating disease occurs, but theories regarding possible autoimmune involvement or exposure via inhalation, to environmental or industrial pollutants are being currently considered. My father had been a life long military man who, following retirement, worked as a salesman at a jewelry store and then, for many years, for the US Post Office. I suspect his decade's long habit of cigarette smoking must have figured into the equation although he had stopped smoking more than ten years prior to the diagnosis. Well, it was here and it was now, and I had to figure out how to deal with the looming monster of terminality. It didn't strike me as a walk in the park. On our journey from life to death there have been some significant obstacles. Recently my husband, who suffered a heart attack several years ago at age 37 just after the birth of our first baby, spent nearly eight hours in pain before by some miraculous coincidence, I was compelled to go downstairs and check on him. We called my mom to watch our three children and sped to the hospital, where he was admitted. I was angry with him and that shocked me. How in the world could he wait so long to let me know of his discomfort considering his history? How could I be angry? Shouldn't I feel relieved? How AM I supposed to feel these days? In the morning I drove home to spell mom and wait for my husband to complete his stress test. Thankfully, all was well. A false alarm is a wonderful thing. Just as I was piling the three kids into the car to pick up their dad, my mother called to inform me that dad was having difficulty breathing and refused to let her call an ambulance. Here it comes I thought; the first time we have to deal with tangible evidence that dad will not get better. Mom didn't ask but I knew she wanted me to come over and check on him. I was immediately on my way. Dad was adamant. There was no damn way he was going to the hospital. Mom and my terrified brother didn't want to upset him any further. His color was ashen gray and his breathing was labored. I noticed that talking elevated his respirations even more and he was gasping despite being connected to oxygen. Mom said the doctor was already waiting at the ER and it was a weekend so he had been called in from home. Big deal, I thought to myself. Who cares how inconvenienced the DOCTOR is? In a futile attempt to temper my daughter status with the nurse component, I failed miserably and burst into tears, fatigue and fear besting my professional demeanor. "Please dad," "Please go to the hospital." Knowing all about the fear factor and denial did not alter the fact that ultimately, I was still his little girl. Dad said he couldn't possibly go without taking a shower. My brother attempted some levity by mentioning that all patients probably smell like old goats. Though he gave in on the shower, dad did insist that we find his special shirt, which included the names of all his children and grandchildren. Exhausted and upset form being awake after several grueling night shifts and a husband still at the hospital, I remember thinking "his orneriness" still possessed some vim and vigor. In the driveway supported by my brother and me, dad collapsed and asked for an ambulance. We picked him up and put him in the car where our amazingly strong mother was poised in the driver's seat. That was the moment there was an actual almost palpable shift from parent to child. It was unnerving. It was also the first time I permitted myself to see the frailty and acknowledge the inevitable. The nurse in me took over as I designated my shell shocked brother to go with mom and dad to the hospital as the children and I followed. He resisted so I reminded him if God forbid something happened and mom had to pull over, I could go over to help out and he could watch my kids. It never occurred to me to linger on the thought that I might have to revive my father. Thank goodness for the automatic pilot thinking years of nursing impresses upon you. At the hospital the same group of admitting people and ER staff did a double take as I checked my husband out and checked my father in. There were jokes about family discounts. It was truly a surreal day all around. The most difficult part of the entire scenario is that is so hard to watch. The changes are insidious. There are good days and bad nights and vice versa. You think you are prepared and then there is a modicum of recovery. Relief is always tempered with fright. It seems a never-ending battle between subtle and obvious. The entire process is unforgiving. How can I have saved so many lives, continually participate in endless scenarios of life and death and STILL not be able to save my dad? Who the heck am I to even think I could? And how come I CAN'T? God, on that humorously poignant journey you have sent me on throughout my life, have you noticed I am no longer laughing? Ironically and thankfully, the only person in the family who is ok with the eventual outcome is dad. Lately amidst the emotional highs and lows that accompany me wherever I go, that fact is soothing. I can no longer watch the "Lion King" without silently cursing the song, "The Circle of Life." It kind of cracks me up sometimes but it's true. Currently I am not too thrilled with the damn circle of life. I hate that it just shows up at your door, breaks it down and knocks you on your butt. Yesterday while sitting on the beach basking in the crisp new spring sun, I could equate the panoramic view of the shore and ocean to the cavalcade of emotions I have been experiencing. Windy whitecaps, gently heaving swells, smooth banks of sand interspersed with trash-strewn spots. The sea tells stories in every lick of spray; the shore in every grain of sand. I catch myself looking at people who have recently lost a parent. I notice how they act and what they talk about. Sometimes I flash back to a time when my grandmother was confused and no longer recognized me. I remember how sad and lost I felt. Will that happen with MY dad? Will he forget who I am or how much I love him? Why am I the only one who gets teary without notice? AM I the only one? Or, am I just not as good as I used to be about it? Why why why? I hate to admit it but the real question on my mind is when when when? Sometimes in posing such questions I feel like the most selfish daughter in the world. When I think of my dad I don't necessarily recall a pristine childhood. He could be a real pain in the neck. He was always there for me though, and still is, to the best of his ability. How in the world am I going to deal with visiting gramma without grampa? How am I going to tell my little ones what happens when the time comes? And to my oldest who is a beautiful, smart sweet young man fairly raised by grampa as a father figure, how am I going to help him through it when I am feeling so helpless myself? Will my babies remember grampa? Will I forget what he looks like? Will they? I can't remember what MY grandfathers looked like unless I peruse a photograph. My six year old daughter tells me each star is a person who went to heaven. I think so too even though science tells me that can't possibly be true. She tells me that she believes there are spirits up with God who some day travel back to Earth as babies. She is convinced that is why I am a maternity nurse; so I can help them find their families. She wonders if grampa will come back as a baby. Part of me shudders at the thought and thinks of the jokes he would make at that. Part of me secretly hopes it is true. Our five-year old son sees God, so he tells me. He thinks that grampa will be ok and just on the other side of the wind. I am told that we will be sad but we should also be happy that God loves grampa so much that He would take him back to Heaven. "Besides," "we all will be together someday mom." The three year old tells me that grampa, who has to walk with a cane and wear oxygen continuously, will be able to rock and roll in Heaven. Oh, if only that was true. I kiss the kids and ask the Angels to watch over them. I guess part of the reason I have done a decent job with them is because dad and mom have done a decent job raising me. It has been a totally bumpy ride with a couple of smooth spots along the way. I know the whole process is part of the life continuum and while I have to accept it, nowhere is it written that I have to like it. See, it IS about me. When my children are sick, I tell them the same thing he always told me. "I wish I could take all the hurt out of you and put it in me." He would gently stroke my hair and temples while saying it and I always felt better. For the first time ever in my life, that is exactly what I want to say to him, and I can't help. I am frightened that the best of my ability just isn't good enough. Did I make him as proud of me as I always was of him? Will he always know that even though I am an adult I will forever be "his" little girl? I just wish I wasn't so sad or angry. But, I suppose the ability to feel such a multitude of emotions is, despite the discomfort, a good thing. This is just the beginning of many phases. I have been thinking so hard and so long that I am totally exhausted. Sleep eludes me but I trust my dreams. I trust that dad is accepting of what is to come and that consoles me. Whatever the reason for my dream of the three of us calmly negotiating the jetty, it remains comforting to me that all was peaceful and calm. I am still not at all thrilled that the circle of life has spun us to the point we now find ourselves but I can surely say I am grateful for the spinning. Dad always made a point to tell us NOT to say goodbye in case we didn't see each other again. That way there would never be goodbye. He felt it was too final. So long implies we will be together someday. Even though this time there will be a definitive farewell, I am reminded it is simply a transition from this world to the next. That said, so long for now dad. I will see you soon, and later down the line, in my dreams as you promised. By daughter and nurse Martha RN *Currently there are no effective treatments or a cure for Pulmonary Fibrosis and there are roughly five million people worldwide who are affected. In the US alone there are more than 200,000 known cases with more than 40,000 people dying annually. These statistics rival breast cancer in their numbers. According to the Pulmonary Fibrosis Foundation, typical patients are diagnosed in their forties and fifties. There are some medical treatments involving steroids and other experimental agents but both have limited success.
  25. mother/babyRN

    Caring For A Family Suffering A Fetal Demise

    George and Martha Night time briskness slapped me in the face as I climbed in to my car for the familiar trek to work. It was my third scheduled night shift but only the first I had felt half way healthy enough to attend. I had called ahead to prepare myself for the pace of the unit, and was already exhausted at the prospect of a wild night. The evening nurse had sounded breathless and added that she had not yet had one free moment to eat or go to the bathroom. "That's just wonderful," I mused, as I negotiated the ten miles of rural darkness to the hospital. Busy nights on the maternity unit were not always the happy, baby rocking times that the general public and most other nurses believed. They could be brutal and exhausting. Sometimes they could even be tragic and an inner voice nagged I should probably expect nothing less. As I drove into the parking lot past several ambulances in the emergency bay, I steadied myself for whatever chaos loomed ahead, keeping in mind that however short staffed the evening shift was, our shift would be even more compromised. Such is the stuff of the night shift. It took a concerted effort simply to walk up the hill and into the hospital. It hadn't escaped my notice that the Emergency room was packed or that there was a blazing harvest moon; two sure hints that my night was going to be crazy. I chuckled at the thought that scientists had actually funded a study to determine that there was no truth to the notion that a full moon impacted upon patient behavior or events. Obviously they weren't out in the trenches with us. My husband had provided me with some soup so I wouldn't be hungry overnight. I just couldn't to tell him that if by some miracle I was able to arrive at a point that eating became likely, simply eyeballing the mixture sent my poor tummy into a tailspin. I attempted in vain to ignore the aroma. I wasn't surprised upon arrival. Full moons generally don't lie. At least one night nurse had been called in early to help the evening staff, and looked as though she had put in a full shift. She seemed so pooped that I wondered how she would get through the remainder of the night. Not five minutes into report I was informed that because three night nurses had called in the night before, two evening nurses had been mandated to stay, and were not there for the current shift. All eyes were focused directly on me. I was still ill enough that I didn't care, but didn't tell them that. Nurses are expected to be invincible and available whatever their condition. I apologized on behalf of everyone. Perusing the patient board, it became readily apparent that it was not going to be the quiet night I had hoped for. Several people were in labor and there were patients in pre term labor as well. I prayed no one would have to be transferred to a specialty facility because there were no nurses to be spared for the ride. Another nurse took me aside and whispered she had a patient she thought I should take. Apparently my "emotional support" skills were legendary and definitely required in this case, which was an eighteen week fetal demise. The alternative was a drug seeking, needy, fresh c/section patient currently lobbying the staff to take her outside for a smoke. For the first time in quite awhile I wished for a labor to immerse myself. That said, I informed the charge nurse I would do whatever she wanted. The expression of relief in her fatigued eyes made me glad I had given her the option. I took a deep breath, said a quick prayer, and prepared for battle. Dragging myself out of the chair, I prepared to meet the unfortunate couple, who were in shock. They had gone to their regular office visit and discovered that there was no heart beat. There had been some spotting previous to their visit but the patient hadn't thought much about it because it was sparse and had occurred with each of her other two pregnancies. She didn't want to talk. That was ok by me. She had recently been medicated for the pain. Her husband was snoring on the couch and I noticed both she and I were annoyed by that. I introduced myself and informed her I was to be her nurse for the night. She grunted something in reply and faced away from me. Her evening nurse had mentioned that this couple didn't want to deal with the staff. They were in a room at the end of the hall to minimize interaction with babies, but we could both hear the cries of the infant in the room next door, and she gave me a penetrating stare that signaled I close the door and get out. I did. Ten minutes later I spied the husband walk down the hall to the kitchen. A tall grizzly bear type, he breezed past me as though I didn't exist. I was not surprised or offended and quietly introduced myself adding that while I had every intention of respecting their privacy I would be looking in on them from time to time. He nodded, shook my hand and wordlessly, turned back toward their room. The room light went on signaling a need for my presence. She wanted something else for pain because her cramps were becoming intense. I immediately called the doctor, an old fashioned elderly practitioner who just could not understand why I would bother him barely two hours after her last dose. He refused my suggestion of an epidural and was not impressed with my opinion that the patient should receive more pain medication. Even my argument that people in labor expecting a healthy baby generally receive multiple doses of analgesia at frequent intervals didn't faze him. Eventually he allowed me to offer the patient a sedative but emphatically insisted that she not be given more pain medication until four hours had elapsed from the first dose. No amount of cajoling would sway him, and I did not want to antagonize the doctor in the event I needed him later on. It was my belief that since we were not protecting a live baby and losing her child was already mind numbing, we should medicate the poor woman to the hilt. Every night I realize a moment when I become a patient advocate. This was it. She wasn't happy with me. Anger blazed across her tear stained face. I told her it was perfectly acceptable to unleash her anger on me. I even encouraged it. Her features softened and she eyed me silently. I promised to bring the pain medication the moment it was due, giving her the option of accepting a heated body massage. I added in the event she chose the massage, I would not expect her to talk to me. To my great surprise and relief, she consented. Ten minutes into the back massage her first words were directed to me in a t, vulnerable voice. "I just don't want to leave without a baby." Then, "this is the most horrible thing that could ever happen to anyone and I just never imagined it would happen to us." She continued to alternately talk and cry as I wordlessly massaged her back, legs, feet and hands. As she relaxed her wall came down and the tears flowed. Mine joined them. I could tell her husband was no longer sleeping, so made a point to mention that often husbands feel left out or helpless since they can't fix things. Sometimes it can seem that they don't care when I reality they care quite a bit. I noticed that he came over and sat by his wife's bedside as she cried. I finished the massage and encouraged them both to rest, noting that they embraced and there were shared tears between them. I promised I would be close by and readily available, taking time to make sure that the call light was within reach. Two am was the appointed time for pain medication and I gave it as promised. Not ten minutes later she rang for more and it crushed me not to be able to accommodate her. I sat with her while she cried, screamed and swore. I said nothing but stroked her cheek as she let out some of the pain we couldn't touch with any medicine, all the while thanking God for my four children. She reached out and grabbed my hand as her poor husband sat helplessly by, pale and silently suffering. I reached over and grasped his hand with mine and with a silent glance that spoke louder than any words I might have said, he acknowledged his gratitude. We three sat there for some time like that, as one. The older doctor had forbidden the patient to get out of bed and wanted her to use a bedpan. Something about dislodging the medication he had administered to promote cervical dilation and the eventual expulsion of the dead fetus. This was another tidbit left over from the dark ages I would have to figure out how to discuss with him. When the patient begged to get up to use the bathroom, I told her I certainly wouldn't refuse but stayed close by due to my suspicion that delivery was imminent. I had been told she was five centimeters with bulging membranes just moments before she had received her pain medication. The fetus was small and it would not require much room to be passed. I asked if she felt vaginal pressure and she angrily yelled that she wasn't sure. She refused to allow me to check her underwear. I think I knew what might happen so parked myself just outside the bathroom door. "OH MY GOD!"OH MY GOD!" "OH MY GOD!" I heard not three minutes later. I helped her to bed and summoned the troops. I needn't have since, having heard her screams, they quickly assembled. My heart sank as I peered into the toilet because I knew what I would find; what I would have to retrieve. Suddenly the soup that made my stomach jump seemed totally benign. I inhaled slowly and reached in to gently bring the baby back home, all the while trying to put the heart wrenching wails of grief coming from the bed, out of my mind. The fetus was intact, enclosed in the amniotic sac with an intact placenta. He was perfectly formed and seemingly suspended in space within the sac. I wrapped the fetus in a towel, and called the doctor to tell him we had a delivery. He didn't want me to rupture membranes so I motioned him aside and told him as a mom I would want to hold my baby and looking at him through amniotic fluid would not be the way I would want to remember things. Crusty, old fashioned with a reputation for eating nurses for lunch, he softened and asked simply that I note the fetus was intact and I was the one to break the water. He walked down the hall a few feet, turned and gestured that I approach. "You are a good nurse and this lady is lucky to have you." Momentarily floored, I no longer felt poorly. She didn't want to see the baby at first so I quietly suggested she hold him while I stood behind the curtain close by in case she couldn't do it. After several minutes she agreed and as all moms will do, unfolded the blanket and checked to see if he had all his fingers and toes. Behind the drape, my tears flowed as she said to her husband, "look at his long fingers" I wondered if she would take my suggestion that he be named but she refused. As I was preparing to leave that morning she was already dressed. I gave her a memory box with the tiny footprints I had taken, along with a poem I had composed just for her. Silently she undid the ribbon and more tears flowed between us. No words were needed. She reached up and gave me a long hug. "Thank you for being my nurse." In all the years I have been in nursing these are the words that keep me going back. I learned early on that palliative care is really all one can do in tragic times, and often it surpasses the importance that clinical intervention provides. Really, it is a marriage of the two that provides optimal support for the patient. In the case of a fetal demise a good OB nurse will learn that while the bond between him or her and a patient is understandably strong, the patient customarily wants to get as far away from the situation as is humanly possible. One of the reminders of her loss is the nurse who cared for her. An OB nurse has to come to understand and not take it personally if the patient does not want her to attend subsequent labors. Taking cues from the patient and family will always lead the nurse into providing the best of physical, psychological and emotional care. I learned a lesson from a patient early in my career who said simply, "you can't save everyone." Well, at least I can try. My patient walked by the desk and stood there without speaking until I noticed, and looked up. "George Alexander," she whispered with a hint of a smile, "after my father." "That will be his name." "Do you think they will find each other in Heaven?" "It's a strong name," I countered, meeting her sad green eyes. "I am absolutely certain they are together." I asked her to wait while I made a card with his name, and watched as she placed it in the memory box, along with some pictures I had taken of George. She was gone before my final paperwork was done. Next week I may not even remember her name. Next year I hope if she remembers me it will be because she is back in labor on or near her due date listening to a healthy heart rate on the monitor. If I am lucky, she will request me for her nurse but I will fully understand if she does not. Until then, she now has an angel in Heaven and however sad I am, I am also grateful and graced that I was appointed to share this experience with them. As I exit the unit, I have to smile as I note that "George" and "Martha" will be irrevocably entwined, always. Written by: Martha, R.N.
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