No miracle cures

Summer was in full swing when one of our regular patients with cystic fibrosis took a turn for the worse. He had reach 27 years old and was now dying. His mum worked in the hospital. The extended family gathered around him in the side room of our specialist CF ward. There were about 14 people who all took turns to be at his side. Most of them were unable to speak and felt useless at varying times.

 

The nurses were also greatly affected by what was going on. They nurse these young people over a number of years and it must be hard for them. I think specialist units like that should run regular supervision sessions for the staff because of the blurred boundaries that occur in these situations. Staff also need a place where they can safely express their own grief as they get to know these patients and their families in much greater depth than the ordinary run of the mill patients.

 

During those last few hours, the young man was able to say what he wanted to happen to some of his possessions and what music he wanted for his funeral. I was so impressed by the way he was facing his imminent death. His family coped with this but had to leave the room to weep when it got too much. I would just follow each of them out in turn and hold onto them, or stand beside them, until they felt able to carry on. When he stopped breathing, his dad started to shout my name. He wanted me to do something, but what could I do? I also felt useless. I reassured them that it was OK and that the young man was at peace now and no longer struggling with the things that were so difficult for him. I said a prayer and told them to all come and give him a kiss and give him a message to take with him as hearing is the last sense to go. It was all so poignant.

I felt the poignancy more so because the young woman that I had been supporting over the years was also there. I had to take special care of her because I was acutely aware that she was staring into her own future. Life is so tough sometimes.

I was in the privileged position of being able to take this young man’s funeral. It was a grand occasion with lots of laughter as well as tears. I felt it was a very fitting end to a young man who had lived the best life he could despite the awful hand he had been dealt.