Hi everyone
Well he didn’t go to the hospice, the ambulance came and between us we decided that there was a drastic risk that he wouldn’t make it and would die in the ambulance. So we are still at home, dreadful times at the moment, he has reached the awful rattle stage and with hiccups adding to the distressing sounds and actual discomfort, things are pretty dreadful. The nurses thought that he would pass away last night due to his breathing pattern but he didn’t. I don’t think I had any idea of how disturbing the rattle would be, he hasn’t eaten for nearly a week now or drunk anything for a few days (no particular problem, it hasn’t been possible and swallowing reflex is gone, hence the rattle).
The thing I have learnt about being at home is this, you cannot rely on the local staff to come when you need them, not their fault, the district nurses are over stretched. The Carers here have been fantastic but as much as we wanted John to be at home the nursing would have been more responsive in the hospice. I did not realise that the syringe driver would always be 24 hours behind the drug curve. The doses are upped every 24 hours to account for the stat doses, which means that you always have a background of drugs in your system (good) but it’s never enough and we have to call the nurses out roughly four times a day. And we wait and wait in an increasingly distraught state for the nurses to come. Everyone involved does their utmost, but it’s not enough for this aspect of it all. On the other hand, being at home means that we can be here all the time and have access to our things and John is in familiar surroundings, even if he is not aware any more.
I really want to say that we are ready for our wonderful man to leave us but I’m not entirely sure that John is quite ready to go. We have told him it is ok to go, that was not nice and the girls were breaking their hearts, I know he can hear us but despite having the majority of the signs of departing, he is still here.
love Allison xxxx