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| I Am the Nurse By Brenda Anne Sheridan “You are the nurse and he is the patient.” “Don’t get attached - it’s not professional.” “Keep your distance or you will never last.” I had heard it all. I had said it all. Somewhere I had come to believe it. Maybe it was because I had seen nurses get too attached to patient after patient. Maybe I was afraid that it was true. Then it happened. I did not plan it or ask for it. All of a sudden, I realized that I had become very attached to my patient and that he was probably going to die. When I first decided to become Anthony’s primary nurse, he was already over four months old. His parents were very young and lived over an hour away and consequently could not visit very often. Born prematurely in May, Anthony had developed complications and was now TPN and ventilator dependent. When he developed sepsis in September, he needed to be placed in isolation. Because he was alone in an isolation room, nurses were reluctant to care for him. I too was reluctant at first because I did not want to work alone every night. I decided to try because I felt that the need was that great. By becoming Anthony’s primary nurse, I was hoping to provide some consistency in his care giving. A firm believer in the importance of primary nursing, I knew how important consistency is in a long term patient. His history was too complex and he needed someone who knew what his “normal” state was. I also hoped that my experience working with older babies would be helpful. Basically I felt that with a little teamwork, we could save this baby. I butted heads frequently with the doctors over Anthony’s care. I tried to convey the sense that he was a person and not just the baby in isolation. I came to know him inside and out. I was able to say what was and was not “normal” for him. Gradually, others began to trust my instincts a bit. By November, Anthony had been through several more surgeries and now had a trach. He was still not able to eat and his liver function was worsening. I could see how much he was suffering. One particular night I came to work and learned he had coded that day. He had stabilized but I knew what he had just gone through. I was so frustrated and upset that I contemplated quitting my job. I told my head nurse that I had thought I would be able to make a difference. She told me that I had--to Anthony. I was not so sure, but I stayed. By this time, I had come to know Anthony’s subtleties. I knew how he responded to people. He was very aware of who was in his room. He cried when the surgeons came in, but he would be calm and even sometimes smile if one of the nurses he knew was there. He watched everything that I did. I could tell when he was just tired and when his agitation meant that there was a problem. I knew that if I held his hand, rubbed his head and talked to him, he would relax and fall asleep. To comfort himself, he used to hold onto his cheeks, I think because it was difficult for him to reach his mouth. On days when he was too wiped out to even hold his hands up to his face, I could put my hand on his cheek and he would relax. His other nurses and I tried to make his life as “normal” as we could. I talked to him, sang to him and told him stories. I made him tapes of lullabies. If he needed something that the hospital did not provide, I would pick it up for him. This did not seem strange to me. It just seemed like the right thing to do. I was willing to do almost anything to make him happy. Other nurses often asked me how I could take care of him all the time. Originally my answer was, “he needs some consistency.” Gradually it changed to, ”because he knows me and I like taking care of him.” I did take breaks from caring for him because it was difficult to do the same thing everyday and I needed to stay current with the rest of the unit. But I was always anxious to get back to him after a day or two. I do not know if I became attached because he began to recognize me and trust me or if he trusted me because he could sense my attachment. Shortly after Christmas, Anthony’s condition worsened. I began to suspect that he would not live another month. Every day was difficult with him. I watched him gain hundreds of grams in fluid every day when we could not give him Lasix because we could not keep his potassium level up. His platelets were constantly low. He was plainly suffering. He stopped smiling. His bad days seemed to outnumber his good days. People told me to pull back, to take a break. I knew that the sadness of his case was becoming very stressful and I hated watching him suffer. But there was no way I could back off now. He really knew me. He would look at me with his swollen eyes and hold onto my finger. I could still calm him by talking to him. I knew that he trusted me and he knew I cared for him. Though there was only a small group of nurses who consistently cared for Anthony, we were able to give him a feeling of love and caring. He was not just another patient. He was a baby with his own personality and we knew that this would be his only home. Unfortunately, his parents were still only able to come once or twice a week. If we did not love him, would he have really known much love at all? Intellectually, I knew that I was setting myself up for a fall. I told myself over and over that he was going to die. It could be any day. I said goodbye several times when I left in the morning, not knowing if he would be there when I came back. I still thought I could let him go just like any other patient. Sometime in late February, Anthony got his smile back. I came in one night and touched his head like I always did and he looked over at me and smiled. It was not a grimace and it was not a fleeting thing. He grinned. He turned his head, looked at me out of the corner of his eye, turned back and grinned. For an hour I stood there and talked to him and he smiled. For the rest of his life, I was able to get him to smile at least once every day that I cared for him. I knew that I had lost one battle. I would not be able to save his life. But I had won a big one. This baby, who had suffered more than most adults could ever stand, was happy. At the end of March, I was going on vacation. I said goodbye to Anthony -- just in case. But it was not real. He was always there when I came back. I lit a candle for him at church while I was away. I prayed for a quick and easy death for him. He died the next day. It was, thankfully, a quick and easy death. His primary nurse on days was with him and held him while he died. She tells me it was very peaceful. I know right up until the end that he knew he was loved. It was the most I could have asked for. Except to have been there. I was out of town and so did not learn of his death until after the funeral. I was honestly relieved and was glad that his suffering was over. This got me through a few days. By my first day back to work I was very proud of the fact that I seemed to be handling his death professionally. I had not shed a tear. I carefully avoided his room and concentrated on my work. But every bit of work I did was a reminder of him. On my second day back, the nurse who had been with him when he died showed me Anthony’s toy that his mother had given her. I surprised myself by bursting into tears. I was embarrassed. Nurses are not supposed to cry like this. But there was also a twinge of relief. I had been thinking that maybe I was unfeeling. I honestly did not know what I should feel so I hovered in between. Instead of being proud of my professionalism, I now became angry that I was not being allowed to feel. I felt incredibly alone and confused. To those who did not know him or care about him, he was just another patient who had died. He would never be that to me, and most people will never understand that. The following week, I knew that I had to talk about this or it would tear me apart. Through some conversations with two wonderful people -- my head nurse and a psychiatric clinical nurse specialist, I was finally able to begin to grieve. I was really angry that I had missed his death and his funeral and all of the immediate support that his other care givers had been able to give each other. I had not been able to say good-bye or comfort him or just see him one last time. This will probably be the hardest thing for me to get over. The most important thing that I learned was that it is OK to grieve for this baby. I had told myself for so long that it was wrong to get attached. I believed that I would be judged for my grief. Once I came to see that my feelings were perfectly valid, I was able to begin to grieve. It hurt so badly at times that I just wanted to get over it. At the same time, I was afraid that if the pain stopped, then I would start to forget him. I visited the cemetery where he is buried. It was a beautiful day and the flowers were in bloom. It was the kind of day I wish he had been able to see. I cried. I said good-bye. I told him it was OK. Then I went home. As a nurse, I know what is involved in grieving. I know that I am coming to accept his life and death. Writing Anthony’s story is a way to help me remember. I loved him very much. I was also his nurse. I now know that these two statements are not mutually exclusive. I could not save his life, but I could show him what love is. Maybe that is what he needed most of all. Am I afraid of becoming attached again? Of course. Will I ever become this attached to another patient? I don’t know. But if caring means it may happen again, then I will take that chance. The day that I stop caring is the day that I stop being a nurse.
This is the original version of 'I Am the Nurse,' which was published in an edited form in Neonatal Network, March, 1999
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