Nursing…for better, or worse

Working in the pediatric intensive care unit (PICU) and the pediatric hematology-oncology unit, I have grown very close to many of my patients and their families. When kids are sick, they can be in the hospital for extended periods. It is inevitable. The timing of illness is never “perfect”. So, in a way, we become one another’s extended family, and we find opportunities to celebrate and plan special parties for “our” kids; we throw birthday parties, play Santa on Christmas, dress up in costumes for Halloween, and we even have an annual prom, where many of our patients dress up in fancy gowns and suits, and dance the night away (like a “normal” kid).

We celebrate the happy events when we can, because the sad ones are all too common. Loss is hard. Some of us are able to put up a protective shield so we don’t “get too close”; we try to protect our hearts from the pain of bearing witness to life and death on a continuous basis. But there are always those patients who break through that shield and you find yourself attached, whether you like it or not. This has happened to me many times. My first experience with losing a patient was when I was a young PICU nurse; I cared for a 10 year old little girl who had Fanconi’s Anemia. She was not an easy patient to care for, and she hated taking her medications. She basically gave me a hard time for every thing that needed to be done (to/for) her… bath, dressing changes, oral care, vital signs, etc. We worked through our challenges, and we compromised when able; yes, even at 10, she was quite the negotiator. After she passed, I went to “sit shiva” with her parents; it was the first time I had ever experienced a Jewish “wake”. I remember her father greeting me saying “finally, I have someone to drink with me”. I wasn’t sure whether to take that as a compliment or not, but dutifully accepted the large glass of vodka, straight up, no ice that he shoved into my hand. I would have preferred ice, and maybe a splash of cranberry or orange juice, but he never asked, and I didn’t have the heart to object or refuse. He seemed so proud and happy that their daugther’s “favorite” nurse came to sit shiva with the family; we quietly spoke about her, and our time together. Her parents looked lost and broken, and I remember feeling so guilty. I felt like we failed her, and her family. There were a lot of mixed feelings that were hard to work through for a young nurse. The vodka helped a bit with that…from what I recall.

After awhile, we try not to attend the shivas, wakes, or funerals of our patients; it can be heartbreaking and can sometimes be a slippery slope with crossing professional lines. But self-preservation aside, I have never had an experience where a patient’s family did not wholeheartedly welcome their child’s nurses at his/her funeral. It shows that we care, that their child made an impact on us; they were special.

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My father passed away last Saturday. While I knew that his time on earth with us was coming to an end soon, it still seemed sudden to me. The days leading up to his passing have been the worst days of my life. I can’t get his pleading voice, “Debbie, please help me” and “let me go” out of my head. No matter how much pain medication I gave him, he woke up soon after in even more agony.  By Friday, he was getting Morphine and Ativan on an hourly (sometimes half-hourly) cycle, and it still barely kept him comfortable. I tried so hard to save him from the only thing he feared in the end…a painful death. Finally, on Saturday morning, we seemed to reach that peaceful period when he no longer needed medication. We had a brief moment alone when I was making sure that he was comfortable, and put some Chapstick on his lips… he opened his eyes and looked at me and I said “I love you Dad”, and he said what he always said to me, “I love you more”. Those were his last spoken words and I will forever cling to them. Soon after, his breathing was slowing down, and he was fading away from us. I could almost see it happening. He passed away peacefully. It was a relief that he was out of pain, but the most heartbroken that I have ever been at the same exact time.

My father’s hospice nurse, Patty came to his wake. When I saw her, I immediately understood what it meant to see your loved ones’ nurse paying their “respect” to the family. Patty said she really liked my Dad; he was a good patient, with a great sense of humor. He bravely accepted his prognosis, and made peace with it. My father made her laugh. She would care for him, and talk him through what medication he needed to take, and when, and he would say “whatever you say kid, you’re in charge”. She would gently correct him and say, “no, you’re in charge”. She gave him back what he lost, which was control. He was unable to walk, or do many of the things that we all take for granted, but he could still make decisions about his care, and how he wanted to pass. Patty made sure that his wishes were honored, and for that, I will always be grateful.

Rest in peace Dad. I love you more.

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Nursing at end-of-life

Nurses are both blessed and cursed with witnessing life, death, and everything in between in our professional roles. We see pain and tragedy all too often… sometimes every day if you work in a busy Emergency Department or Intensive Care Unit. It can be very difficult to experience the feeling of helplessness when caring for a patient who is not going to “make it”. Our goal is to save lives. “Not today”, we tell ourselves as our patient crashes; we call for help and start resuscitation…sometimes it works, and sometimes it doesn’t. Highly skilled and experienced nurses are able to adapt to the stress of life-saving emergencies, but it is still a very difficult process; we focus on tasks and try not to think about the patient being so young. We try to block out the cries and looks of fear from family members as they pray for their loved one to survive. We get through them because we must; we have other patients who need us, and this is what we signed up for when we chose our profession… or it chose us.

We take the laughs when we can because humor really does help us get through those horrible shifts. We create “inside” jokes with our friends and colleagues to stay sane. I believe this is why nurses develop such strong bonds; we understand each other.

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And then there comes a time in every nurse’s life when we are faced with the challenges of caring for a loved one as they near the end of their life. I am here now. Both of my parents have cancer; my mother has malignant pleural mesothelioma, and my father has stage IV bladder-lung-bone cancer. Fortunately, my mother has outlived her predicted life-expectancy of less than a year by an additional year, and has responded to chemotherapy, Alimta. My father, on the other hand, has not responded to chemo (IV or instillation directly into the bladder), cyber knife, radiation, or immunotherapy. We have had those difficult conversations with the oncologist, who is as kind and compassionate, as he is honest. As a family we have practiced patient-centered care by placing his preferences and needs at the center of his treatment plan; he is now in hospice and we are focusing on comfort and quality of life. To say that I am deeply grateful to their expertise and care is an understatement; they are truly amazing.  They manage pain with all the available tools in their “comfort care” toolbox; what they don’t have, they get. Quickly.

Talking openly about funeral arrangements, and what to expect as death becomes imminent, can be impossible to imagine when you are face-to-face with your dying parent. I suddenly forget that I am a nurse, and am back to being a daughter that can’t form a sentence without crying. You are torn between wanting (much) more time, and wanting the pain to end for your loved one. I am much better at holding things in and not saying what needs to be said, which has led to a mountain of regret in my lifetime… but that’s another post, for another time. Trying to manage my feelings and emotions about being a nurse, and caring for my father, who is nearing the end of his life, is what inspired me to start this blog. I hope that it can help me to find the words that I need to say in the end.

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