The palliative care nurse came this morning, I had phoned the physio yesterday because they deal with the equipment needs and she came too. The physio wanted to see Chris stand to assess whether he would need a stand aid or a hoist. I think it was quite clear when they both had to support him that a hoist was needed. They could see Chris was pretty weak now in his upper body as well as his legs.
This in turn prompted the talk of carers. We were told that two carers are needed to use the hoist and although I could help, Angela felt it would be better to have two to start with, twice a day. I know Chris isn't really happy about this, but he knows it is necessary. Angela said she would be fast tracking continuing care, which hopefully means the care will be funded by the NHS, fingers crossed. Chris has also tried to shave himself and brush his teeth since we got back home, but again he reluctantly admitted that he needed help, so I do both for him now. My dear boy is now totally dependent on others for all of his needs, my heart breaks for this once, very hard working man, to have so much stolen from him, it is so cruel and unfair.
We also told her that Chris no longer wanted a trachaestomy in any circumstances, he personally didn't want to be kept alive while his body continued to die. He said he did however wish to be resuscitated as in a heart attack for example. Angela explained the realities of this and that should he survive resuscitation in such circumstances he would be very ill and put into ITU. I understood what she was saying, but I think Chris needed more time to ponder this point. She is going to send out some literature to help explain things. It is hard for anyone to accept these things and to decide what to do about it. It is scary.
We also talked about our trips to Plymouth and the equipment they have loaned Chris, how the cough assist and suction were working well, but still not the NIV.
Ironically he felt pretty good mucous wise yesterday and refused the cough assist, he wanted to try the NIV at bedtime, however the same thing happened and it triggered a choking episode. Today he is paying for not using the cough assisit yesterday as the mucous has built up twice a much and the cough assist session today really took it out of him.
Now he sleeps and I take some time out to rest. In the distance I can hear the cattle calling as we are having our last TB test before the cattle are sold next week. I know all of this has affected Chris too.
What an absolute b*****d this disease is, I hate it soooooooo much!!!!
