No.78. Time to rest.

It was good to get Chris home yesterday, he hadn't slept and was tired and uncomfortable . He ate some lunch, but couldn't manage it all. I asked if the nurses had cleaned his PEG or flushed it, but he said no, so we tackled that together. Hope we did it right. I will phone our GP surgery on Monday and see if the district nurse can come out just to make sure. Chris then went to bed aound 2pm, I woke him at 6pm for his tea, but he fell back to sleep and didn't wake up until 8.30pm, I guess he really was tired.

He said his throat was uncomfortable too. It looked sore, I guess that is the endoscopy and the breathing tube's fault. It'll take a day or two to feel better I suppose.

People keep telling me that Chris should have had a PEG nurse assigned prior to his op, he has been sent home with no advice at all, other than to clean it with boiled water. I have messaged his MND nurse Tracey and hope she can help. This hasn't been a good experience all round really.

I have yet to hear anyone with MND say they have had a good experience in hospital yet, which is really bad. I think it is purely down to lack of knowledge about the disease. Maybe be staff should be encouraged to go on training courses, I know they must be available as one of Chris's nieces, who is a physiotherapist, went on a one day course on Friday purely too do with MND. I'm not entirely sure how this can be redressed in this modern, underfunded NHS, maybe the MNDA could help with information sheets/cards, that someone with MND could take in with them if they go into hospital. I've mentioned it to them anyway.

Well it is 8.30 am and Chris is still asleep, for someone who has got up at a 5.30 am for most of his adult life, this is quite the miracle. Chris might not like it, but the enforced rest will do him good.