When we had talked about his death, the one thing he was sure of was that he wanted to die at home. I brought him home on the 5th of May 2016. He saw it as a big change. The biggest difficulty for him was that with the help of the hospital palliative care team they put a home care package in place, where we would have a carer come in twice a day and that was very difficult for him. But they got around him by saying it would be useful to me, and he always would do what was useful for me, you know.
He came morning and evening. He came for an hour in the morning and a half an hour in the evening. And it was really to look after Frank's needs, you know, he'd get him up and he'd shower him when he was able and he also, in the nicest way possible, you know, like I found him one day and he was ironing and I was saying oh gosh and he said ‘Oh no no my job is to help here at home and it's whatever makes things easy’. And after that I felt like I had a butler because he would do the ironing. But he was great with Frank, you know. He knew how difficult it was for somebody like Frank to accept help and he did it incrementally and he did it very gently. I had only ever heard very good things about the hospice, so my assumption was that, apart from looking after Frank, looking after his medical needs and his care, that they would be supportive. And I don't know whether my assumptions were too good. Because I didn't, I didn't experience that. I think it would have helped if we could have had two maybe three nurses who might have been seeing him. But to have six different nurses in eight visits is not continuity, so continuity would have helped. When they would say to him ‘how much pain do you have?’ well if he tells the first nurse, you know, say how much pain he has or how much discomfort, how does she judge that relative to nurse two or three or four? Whereas a nurse who would get to know him could judge and he was someone who actually under-reported his pain and I knew that the hospital had passed this on to the palliative care that he was someone who really never made a fuss, so if he said that he was in pain, he was definitely in pain.
The hospice nurse was with me on the Friday and she said you'll have a nurse tonight but we won't have one tomorrow night. And then she said ‘I'll see you on Tuesday’ because she was off on Monday. And then on Saturday, he died; he died on the Saturday at twenty-five past seven in the evening. And I remember, I just remember thinking, I won't have to see that nurse on Tuesday.