Chris's tablet has been returned and repaired so he is able to practice with his Eye Gaze again. He seems to have settled into taking very little orally at all. Usually at tea time he might have a small pot of mousse or custard which takes him all evening to eat and nearly always he has choking issues with it. I give him a mug of water in the morning and he still has the same one by the end of the day. He still manages to enjoy a couple of Lindor chocolates at the end of the day before bed. I shall never get over feeling guilty eating infront of him. All his fluid and nutrition are via his PEG now. I know he is really grateful that he had the PEG fitted when advised. I think it has saved his life for sure from that point of view.
Chris keeps himself occupied with farm paper work or watching TV or reading. He doesn't venture out onto the farm much now. I'm not sure if he finds it frustrating to see things going on that he can no longer do, but he doesn't seem to pine for the farm like he did.
It was lovely today though when a local farmer popped in to see him. I am sure Chris must get fed up with my company all of the time, so it it was nice for him to chat with a different person and talk farm stuff. I think Chris enjoyed the visit. I wouldn't say that people stay away or anything, Farming is a particularly lonely life anyway really so visitors other than family were always a rarity even when he was well. He does enjoy it when people do pop in for a chat. It makes a change from the usual day to day stuff and to have something different to talk about.
I have been so surprised really how quickly Chris has adapted to each stage and moved on with it. I think that must be a good thing as far as his happiness and state of mind go. He doesn't seem to let himself get bitter. That doesn't mean he is happy about it, of course he isn't, but I think he realises getting frustrated and angry isn't going to change anything.
My own emotions have been rising to the surface a little more often than I would like. I try not to let them get the better of me if I can help it though. I popped across to the house this afternoon and I felt so sad to see the garden . We planted some new plants last year and they are now starting to bloom, but they are surrounded by weeds and look so neglected. I feel like I have abandoned one of my children. It is strange to feel so guilty, but then it had been lived in prior to us moving for over 160 years, so maybe it feels sad to be empty too for now.
Chris gets very restless at night because he slips down from the pillows he sits up against. We are getting a new bed soon, one that rises at each end. I think this will be better for Chris and will keep him in a more upright position while sleeping. I did phone last week about him seeing his respiratory doctor, but the earliest appointment is in June. They just said if he had any serious issues to dial 999. Hopefully that won't be necessary. I'd like to think that particular need should never arise.
I am reluctant to say things haven't changed with Chris recently. The status quo is very welcome, but I don't want to tempt fate. I remember the consultant saying the progression would follow a straight line downwards, but for Chris it seems to go level for a while and then step down a big step. Everyone is different with this disease.
For now the MND status quo is very welcome thank you.
