On Saturday Chris choked on everything he ate and that isn't much. He can usually manage a little bit of fresh pineapple in the morning chopped up small as it is supposed to be good for oral health and a banana, but not then. I made up some custard and he managed to eat the banana mashed up in that. On Good Friday he had a Hot Cross bun warmed in the microwave so it was very soft and squishy and he ate that with butter very slowly and enjoyed it. On Saturday he choked on the same thing and couldn't eat it. On Friday he drank his usual drink of hot water very slowly, on Saturday he choked on it, in fact everything he put in his mouth he choked on. He cannot tolerate the thickeners either.
I had to keep leaving him to go over to do things at the bungalow, but while I was there Tam's boyfriend Karl came to get me as Chris was having a bad choke. Tam had dealt with it very well, even managing to give him a Lorazepam to relax him, but she was crying and distressed at Chris's distress. Chris was so tired, all this had taken it out of him and I was really upset for him. We both shed a few tears and I got really angry with this damn disease. I hoped it was a blip and not a sign of progression, but regretably the same thing happened on Sunday. He couldn't even manage his usual chocolate treat, or his hot chocolate with Bailey's.
Chris has little appetite now and I think these choking episodes have really scared him and he is beginning to accept that he may need to take all of his nutrition now via his PEG. I was woken at 4am too with Chris choking on his saliva again. He settled after and went back to sleep. I could not.
It is typical that I can't get in touch with any of his support team because of the bank holiday. I will contact his MND nurse and dietician in between moving in on Tuesday. Thank goodness for our mobile phones as we will have no phone or broadband while our number is transferred.
Chris will need extra nutrition during the day now as he is only having 1350 calories via the PEG at the moment. I will get advice too about the right medication to help with saliva build up.
I get no joy in cooking and eating a meal now, not when I know Chris has to watch us eat when he can't. Even though he says he doesn't fancy anything anyway, I still feel guilty to eat in front of him.
I have also had to help Chris more and more with getting dressed and stuff like that. This damn disease is progressing and I don't like it and it hasn't even been a year since diagnosis yet.
We are moving house on Tuesday (tomorrow) and I am hoping it doesn't upset Chris too much or make him worse.
This disease makes you feel so helpless. All I want to do is to make Chris better, I don't want to lose him, I hate seeing him suffer too. It is so damn cruel.
Now to try and get an hours kip before the PEG alarm goes off.
We need a cure..end of....Please.
