During the last week of March in 2017 dad’s pain was shocking. He had phoned me repeatedly daily, crying. Friends who had demented parents on Facebook were telling me that his reality is different. Others like the lovely Janice knew my dad through my posts and just knew he was in agony. I had told the staff many many times I felt he was in pain from his metastatic cancer. So had the Hammond Care Team (DBMAS) and Morag the team leader who came out to see him after I spoke to them in despair about his behaviours the previous year.
So fortunately did the new NUM. He phoned to apologise after we were told by an RN that dad had not got out of bed after crying the day before. He was crying and crying in pain. My son and I were feeling angry, upset, horrified and powerless. So we got in a taxi and went straight to dad. When we got there he was approaching the dining room from his bedroom. It was a hot day and he had on cord pants, two woollen sweaters and one of his lovely Irish tweed jackets. On his head he had a thick woollen beanie I had knitted him. He was totally out of it, as white as a sheet and was unaware of his surroundings.
The ladies were very worried, especially Betty the non verbal lady, who always sat closest to his room, as he always stopped and asked her if she was okay, did she need anything? The other lady who was really upset was the food prep lady. They all loved dad and knew he never ever stayed in bed unless he was in pain. It is totally against his Irish work ethos to laze around anywhere in the daytime. Indeed when I was younger my mum would save a lot of her housework for the weekends so as not to feel lazy around him!
It took about forty minutes to get dad zoned back into why we were there. My son went down to Kmart to get him some computer stuff and I stayed and soothed dad until he was back to a semblance of normality. He said he had not wanted to worry us.
We were so exhausted after settling dad and from the emotional impact of seeing him so weak that we also got a taxi home. Over $120 in taxis that day but it could not be helped. When safely home with a cup of tea I emailed the NUM and we chatted the next day. He apologised that dad’s pain had not been correctly charted over the weekend and he said it’s not good enough. He contacted the GP who was against Mater Palliative Care being called but the NUM insisted and said I had been after that, as his Person Responsible, for some time.
A week or so later the Team from Mater had been out, dad had a Morphine Patch on for pain and Respiradone for the anxiety and fear that was keeping him up at night. Dad is not silly, he knows. And was frightened of the pain meaning he was going to die soon. Whereas the Palliative Care Team is also about life, and living it well until the end. It has been a year this week since dad started the patches and he is a different man. He now needs it boosting with Panadol, which I had to suggest and insist upon, but his endurance is incredible and a testament to his strength of character.
I have always been proud of so very many aspects of dad’s life, and maybe the way he is approaching his death may yet be the thing I will be most proud of.
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