we have managed to get John downstairs thanks to St John’s ambulance (apparently the CCG paid for it thanks to hospice intervention). We have a hospital bed and have had the room set up for about a week now. John has managed to get over the infection but he is in a bad way, very cold and clammy and poorly. The hospice nurses have been amazing and have pulled the stops out to help me. I didn’t get a hoist as John did manage to walk that day, just a few steps but I hoped he would get better, he didn’t sadly and hasn’t walked since. We’ve tried to get him out of bed but it’s very hard, he’s only 70ish kilos, probably less now but it’s so difficult to move someone who can’t help you. My brother in law went home today, I don’t know what I’d have done without him, he was amazing. I don’t know what will happen now as I’m alone and can’t manage by myself so i think I do need carers now. Our nurse is coming on Friday so will organise it then. We may have to pay, depending on whether she decides that John is far enough into his end of life journey. I just don’t care really, I just know I cannot move him by myself, even to change sheets or his damp clothes. Our girls have both said they realise that dad is dying and accept it as his life is just awful. We don’t want to let him go but I can feel it coming. I think there seems a moment when you do accept it for obvious reasons and we have reached it. John is very upset, he feels utterly dreadful and frightened and I wish I could help that. I have no idea of timescale but nothing would surprise me now. The hospice nurse said that the cold and clamminess is a sign of his body being under severe stress, I wish he could be calm and happy but that’s just ridiculous isn’t it. I’m calmer than I thought I’d be, though my daughter called it numbness, and I think she’s right. I’m still working, I find it helpful to think of other things and John says it comforts him that I will have a life for myself, I even made it to a super dooper high powered meeting in London yesterday and really enjoyed it, (I’m not high powered but it was nice to be invited), I’m rambling again, but that’s what happens when you don’t know how to finish a post. So I’ll just say, bye for now, I’ll update soon.
Thank you for the kind words of support, I appreciate every single one of them. Being able to download here is helpful.
love Devonmaid xxxx