Prior to Madox’s diagnosis, I was a palliative care nurse in the community. It had always been a passion of mine to work in palliative care. Specifically, pediatric palliative care. Many people cringe when I use to say that, and I understood why. Caring for the dying is difficult. Add a dying child? Unnatural. I had years and years of pediatric experience, and I finally made the move to community palliative. Since my city really doesn’t have a kids palliative program, I was content in getting the experience until that day came. When Madox died, I quit anything to do with palliative care and pediatrics. I went out of my way to find a job at a desk, or where I wouldn’t be able to get close to any patient. I created a protective bubble for myself. I was afraid of falling apart in front of everyone on a daily basis. I considered my new job as safe, and I was content with that.

 

This past year I have been missing the kids on the acute ward I use to work on. I also missed working in palliative care, but wasn’t sure if I was ready. The university in my city was looking for clinical instructors on a palliative care ward, to teach and guide 4th year nursing students. I thought about it for a very long time, before applying. It is only part-time but I thought it would be a good start to see how I can handle dealing with death and dying again.

 

There have been moments where I noticed I would avoid certain rooms unless my students needed me in there. I wasn’t allowing myself to get close to the patients or family members and kept focused on teaching the students rather than get close to the patients. I would sit in post conference and encourage the students to sit and listen to their patients as they need to talk about their experience. Their fears. Their regrets. I would explain that one of the important things in the palliative care role was being genuinely empathetic and slowing down to be with their patient. There was no need to run around only doing technical nursing tasks, when holding a hand and listening is so meaningful.  Yet here I was,  not listening to my own advice.

 

Then one day I felt an urge to speak to a man watching his wife’s life slowly taken away. I would watch him from afar for weeks, putting on the “I’m fine” mask I wear so well. I saw right through it, but he didn’t know. He would enter his wife’s room and put that smile on just for her, so she didn’t feel guilt or sadness for him. As soon as he stepped out of her view, his posture slumped, his eyes stayed to the ground and his smile faded away. The most I ever connected with him was a hand on his shoulder or a hello in the hall. Today I felt a pull to go to him, to sit down and speak to him. Allow him to share his fears with me, or to just sit in silence together. He was sitting alone in the hallway. I kneeled down beside him, placed my hand on his knee and said for the first time to him “I’m so sorry *Sally is here.” He immediately grabbed my hand and began to sob. We sat there for a long time talking about his fears, about his guilt of not saving her, and about their beautiful life together. He shared why they didn’t have children, all the places they travelled and how they have no family or supports in the city. He sobbed through it all, the happy and sad moments, but he was sharing. I can tell he needed to share, to celebrate the life they use to have. The one thing that struck me hard was one comment I couldn’t get out of my head “I wish I can just take a pill and go with her.” Sometimes we just say things like that because we are hurting so badly. But sometimes, we can mean it. Before I could speak to him more about it, my student came by with medications to give to Sally. Her husband wiped his tears, put on that smile and entered the room with the student. I was left there thinking about what I can say to help him, but is there ever anything right to say?

 

An hour passed and I couldn’t get him out of my mind. I was worried he would take his life after his wife passed and I couldn’t just sit back and pretend it wasn’t a possibility. Thankfully I was at the desk when he was walking out to leave. I jumped up and asked if I can walk him downstairs while we spoke. I never sugar coat things so I started flatly ” I’ve been thinking about what you said about just ending it all when Sally dies.” He stopped walking and turned to look at me with such sad eyes. “I don’t normally share my life story with patients or families but I think I need to share it with you. My 9 year old son died 3 years ago from a brain tumour.” He immediately began to cry and his knees got weak. I grabbed his shoulders and he stood tall looking me right in the eyes. “I wanted to give up. I wanted to end my life. It was all I would think about for a while. Then I thought how selfish it was of me to take my life when  my son fought for his. Like your wife is fighting for hers. How selfish of me to think that when I could live the life my son would have wanted me to live, as Sally would want for you. How else can we honour our loved ones if we just give up and take the easy route?” He was sobbing hard and nodding his head in agreement. I went on to tell him “I would be lying if I said it will be easy. It will be hard, but we do it to honour the love we miss.” He shared with me that he lost a teenage brother when he was younger to brain cancer and he remembers how his parents were like after the death. He took a deep breath, wiped away his tears, “I will live the life she wants for me. I promise. Thank you for sharing with me.” We hugged and he left with more to contemplate.

 

Life is so difficult. Depression takes over when you are grieving so much. Being alone makes grief and depression ten-fold and I still worry about Sally’s husband. I hope I was able to get through to him. I hope he see’s that the love they share can help him carry on. Maybe he can find peace one day, but I know it won’t be for a long time. I hope he never gives up on himself, like I haven’t given up on mine.

 

*Sally’s name was changed for privacy of patient

 

Take time to listen