Kane’s story: Jess’s care perspective

“I met Kane when he was really little, when I was working in a hospital. It was just before his diagnosis – we recognised that he was having seizures and we pushed for that to be investigated. After that, I didn’t see him again until he came to Demelza for end of life. That was a very bittersweet feeling - I was so excited to see him again but knew it was going to be the end of his life. It was lovely, in a weird way, to get to have that full circle moment with him. I had the privilege of knowing Kane for his whole life – even though it was a very short life, I got to follow him for the whole thing. That doesn’t happen very often.

“His parents also found it reassuring to see someone they know, because they were very apprehensive about coming to Demelza. They thought Kane was going to come to us and die straight away – they didn’t realise what we actually offer. They thought it would be like a hospital, but it isn’t like that at all. They got to focus on Kane and be there for his brother Harley too. Kane’s nanny Kathy also got to stay, which had a huge impact for them all. Even though they didn’t want to be here at first, their opinion had changed quite a bit by the end.

“At first, Kerri and Craig were resistant to handing over care, but because they knew me already, that resistance broke down quite quickly with me. I was able to create a care chart for them and share it with the team, so we all knew what medications were needed and how the parents wanted to do things. They really liked that and it made them more comfortable with letting us care for Kane. I was just trying to use what I knew about them as a family to help break down those barriers – their likes and dislikes, their sense of humour – it helped them open up and share things with me I could pass onto the team and explain their concerns, so we could work together. Hospice care means you get that one-on-one time, you get to really be there for families. You can focus on them, learn about them and discuss everything properly.

“Before they came in, I used to call Kerri all the time, offering day care, but they weren’t interested - they had it all under control. They were happy at home and they were so on the ball. This is partly why they had their guard up, but slowly, we saw that guard come down. They started to realise that a hospice doesn’t just mean death, it’s got a much bigger meaning – we looked after them, we fed them, they constantly had someone to talk to or to explain things. They just wanted to be spoken to, not told what to do. They needed to know that their opinions mattered because they were advocating on behalf of their son. We all completely understood that, which is why I think their opinion of the hospice changed - because we advocated for them in return.

“From their perspective, we were coming into their space. They had coped for all that time without us, they didn’t need us and they were happy doing all Kane’s care. But we adapted to what the family wanted and that’s what made them more comfortable – that they still had control. Once we gained their trust, they relaxed and they could just be mum and dad. They were still caring for their child as best they could, but also just enjoying every minute with him. 

“"We had an amazing moment in the garden with Pete, the music therapist, singing. It was the most beautiful thing I’ve ever seen and probably one of the hardest moments of my career. I had to apologise to Kerri and Craig because I found myself feeling very emotional. The family said it was so beautiful because it showed how much they meant to us. They understood how much we cared.

“At the time, we weren’t open 24 hours, but again we just adapted. When an end of life comes in, our team is so incredible. We just get on with it – we all step up. Everyone will swap shifts, change what they’re doing, we adapt so well as a team. Everyone – nurses, HCAs, kitchen staff, cleaners, we all pull together when a child needs end of life care. I don’t think Kane’s family knew anything about all the changes that went on behind the scenes, but we’d never have had it any other way – we just wanted to do whatever they needed. You’ve got to have the right mindset to do this job. We’ll do anything we can to help, because if any of us were in that situation you’d like to think other people would do the same. We’re really understanding, flexible and we do what we need to do. It’s an honour to be part of this team. Every single one of us pulls our weight. For families not to even realise what is going on behind the scenes, it shows how we just crack on. All we could hope was that we were giving Kane’s family what they needed and wanted, and I personally believe we did.

“I was absolutely gutted when I heard that Kane had died. I still remember the date. I was so upset I hadn’t been there but I did get to go to his funeral. The family specifically asked me to be there, which is an honour in itself. I had some really good moments with Kane – I miss all the kids I’ve been with for end of life, but they really are a lovely family and it was a privilege knowing Kane. It’s obviously not our grief, but we do grieve too.

“People often say they don’t know how I do this job, it must be so hard. Don’t get me wrong, sometimes it is hard, but it’s an honour. What you get back is so much more.”