Kane’s story: Megan’s care perspective

“The first time I met Kane properly was when he came to Demelza for end of life. He had come in for a Dots session previously, but never for day or overnight care. Kerri and Craig knew their time with him was going to be short, so it was really important to them to do everything for him – they didn’t want to miss a moment. 

“They were a formidable team who worked together to meet his every need. Daily life meant they had been like ships in the night – one did the night shift, the other did the day, and everything was about Kane. It was incredibly sacrificial love. Because Kane couldn’t communicate for himself, they developed an incredible understanding of what he needed – it was an instinct they had for him.

“When Kane first came to Demelza they wanted to do absolutely everything for him. They didn’t really want to be with us at all – they wanted to be at home, but their housing situation wasn’t suitable and so they ended up deciding to come to us. That was difficult for them at the beginning, and we had to be very conscious that we were working with someone that didn’t want to be there. We had a lot of pressure on our shoulders – we wanted to make the experience as good as we could for them. They were very clear that they wanted to do all of Kane’s care which we completely understood and respected, and we made sure they were in control of everything they wanted to be. Once they got to know us and learned to trust us, they started to allow us to do some of Kane’s care. It was a negotiation the whole time and we really respected them and their wishes, working together to make Kane as comfortable as possible in his final days.

“The family were with us for four weeks. Initially the palliative care team believed Kane’s end of life would be imminent, and so Kerri and Craig were very focused on him, barely leaving the room, watching his every breath in case it was his last. It was so intense. But then, when he outlived that prediction, we started to encourage them to move out of the room, and they found a lot of comfort being out in the garden.

“End of life is obviously very intense and very emotional, but families do still laugh and have fun, and that’s OK. Sometimes they feel guilty, that they shouldn’t be laughing while their child is dying, but children love to hear you laugh. It brings them joy and comfort, and those are the noises that are familiar to them. They need that experience, and so do their families. Giving them the opportunity to make some happy memories during that time is so important. Amidst the tears, we had a lot of laughter with Kane’s family.

“Kathy, Craig’s mum, also stayed with us, and it was brilliant to have her there. She was an incredible support to Craig and Kerri, but obviously she had her own emotional needs as well. Not only was she losing her grandson, but she was watching her son go through such terrible pain. As a mum that’s really hard because you feel your job is to protect your child, and there was nothing she could do to stop it. But the three of them worked together to support each other, and we were there to help them offload some emotion and then go back in to take care of one another. Kerri and Craig hadn’t let other people look after Kane before, but once they started to trust us they occasionally took a break and gave us the privilege of caring for Kane. One time they took a walk and Kathy was able to babysit Kane for the first time. She really enjoyed having that special time with her grandson. If they’d been at home, I’m not sure how much Kathy would have been able to be involved, so it was lovely for her to have that time with Kane.

“Although they didn’t want to be at Demelza, they would often say it was the best place they could have been. They recognised that it would have been so much harder at home, because it would have been so intense. There wouldn’t have been the same support, they would have had to keep going and going. They’d have been physically exhausted, they wouldn’t have had any sleep, and they’d have had to do all the medical decision-making on their own. So being at Demelza and having us at their side, to offer our knowledge and experience and to advocate for them as well, made a big difference.

“Kane’s care was 24/7, and at the time the hospice wasn’t open 24/7, so we had a shadow rota of nurses which we flipped onto for night shifts. End of life is our absolute priority and we will move heaven and earth to make that care happen. With Kane, we had to sustain that rota for four weeks, so it was incredibly challenging – I covered a lot of shifts as the lead nurse, as did our team leads, so it was full-on for us to manage but that was never reflected in our care. The team were exhausted, but I really believe we gave Kane’s family the best possible experience. We all worked together to meet their different needs at different times and it was a real privilege to be part of that journey. They were a lovely family to work alongside and support.

“Eating is really difficult when you’re losing your child, your appetite is affected and even swallowing can be hard. Parents can also feel guilty about eating – how can I think about my own needs when my child is fighting for their life? But their child needs them to eat, they need their parents to be strong and have the energy to be there for them. Our catering team really got to know Kane’s family, the foods they liked, and made sure these were available. Or if they couldn’t eat a full meal, they made sure they had things like bananas that are easy to digest, quick to grab and would give them an energy boost. There was always cake too – Kerri and Craig both really loved the cakes. It’s so important to be able to nurture and spoil families a little while they are going through so much.

“When Kane died, he stayed in the bereavement suite for a few days. It was really important for them because it gave them time to look after Kane for a little longer. When you lose a child, you lose their life, but you also lose your whole care-giver role. That was stripped away from them, and Kane was their life, their purpose. But being in the bereavement suite, they could still see him, care for him, hold his hand. Having that physical connection is so important, it helps give families a more staged process of loss so that it’s not all taken away from you at the moment you child dies. It meant Kane’s parents had time to talk to the funeral director, to make special requests, to choose the outfit he would wear and special items to be put in his hand. When Kane left, they didn’t want to be in the room, but they trusted us to supervise moving him – they knew we would make sure he was treated with complete care, dignity and respect. We all went outside with them to pay our final respects as Kane left the hospice for the next stage of his journey. 

“It was a hard moment for all of us, because we had grown so fond of them in those four weeks. You can’t help but feel emotionally attached - some of their pain rubs off onto you. It’s hard but knowing you’ve done the very best you could for them helps you get through. Although this terrible thing has happened and you couldn’t change that, you’ve made that terrible experience as good as it could possibly be. We felt a huge amount of achievement and pride, and they were so grateful for the support they received.”