Hello, everyone
Looking for reassurance really. Doug was still having problems with his ventilation so there was a small meeting at our home consisting of the hospice doctor, his vent nurse and his neuro nurse. The upshot was Doug agreed to go into our local hospice for assessment, especially as the use of his Nippy is concerned, and to give me a break. They were also going to arrange to change his care team. He was admitted last Wednesday.
It has been awful. Wonderful as hospices are this one seems to know little about MND and they seem to know less than nothing about Nippys. Worse, his admission seems to have triggered another downward step in his condition, he seems to be getting weaker in front of my eyes, they said this morning he is now at the stage of needing ventilation full time (which I imagined was still some way off) and, worst of all to me, he has started to refuse Fortisip because he hasn't got the energy to manage them.
I HAVE insisted on having a couple of days to myself but to be honest I spent most of them catching up on things I have been able to do for him while he needed my attention and because when I see him the following dsy I feel as I had abandoned him.
I have finally accepted that MND is going to take him from me but now I feel in a sort of limbo, as if it is going to be a lot sooner than I thought

Sorry for rambling on, I just feel so helpless and useless
Christine