Carmel Ryan's Story

Well my name is Carmel and my husband Eamon died Christmas of 2015. He had had an underlying blood disorder and it eventually changed into acute myeloid leukaemia. The transition from hospital care to the hospice happened very very quickly, from going in as an outpatient on a Friday to being, as we understood it, admitted over the weekend for pain relief and to get treatment, a treatment regime put in place.

So in a hospital where he and we felt very safe and cared for, the staff were fabulous, I couldn't sing their praises enough, to being told within a couple of hours, ‘well actually there's a bed in the hospice for tomorrow morning, you have to be here by ten o'clock in the morning to move, if you want to go over with him’. And at no stage really was Eamon being brought into that conversation. It was a whirlwind and we didn't feel prepared for that, because we had understood we could care for Eamon at home; that he would be back home to us on the Monday morning and the hospice home care would then come into being.

They were sedating him with Midazolam and something else and he didn't want it. At one stage I remember he was trying to pick up a fork and he said ‘I don't want this, I don't like this feeling; I want it to stop’ and we spoke to the staff who said no, he needed it. And it was argued and argued and three doctors were in telling us that no, it was necessary, and that we were over reacting to it. We said Eamon does not want this. Very often it arose, they didn't actually understand that we knew what he wanted; that he was communicating to us and finally one of my girls said, ‘the question of patient consent is actually an issue here, we're telling you he doesn't want it’ and that seemed to make people stop and think. And they reduced it and his quality improved, he was happier in himself.

And then later on when he did need it, they gave it to him and they gave it to him very well. I don't want this to sound negative, all of it, because overall I would recommend hospice care to people, I would think that it’s, there was dignity in it, there was a sense of peace about it and there was a natural end. When you know somebody is dying you know that that's the outcome. It was lovely to get it, to get, to be actually in that moment. Maybe take the professionals’ advice and if they suggest entering a hospice it's for a very good reason because I know we became a family again, rather than carers, and that was much better for us, it helped us enjoy Eamon to the very end and it helped us cope better afterwards.