Sunday 9 August 2015

No. 226. 'Not a bad day.'

We were asked if we wanted to do an awareness stall at our local village church fete. Normally I would do it on my own, but Chris needed to be with me, I wasn't going to leave him home alone and I wasn't sure if he would need to get back home. I asked a lovely lady who I had gotten to know, Christine, she had lost her husband to MND and was on the local branch committee, if she would help me and she agreed.

Christine brought a lot of awareness stuff and I made up a hamper of local produce as a raffle prize. I also made up ten copies of Chloe's single on CD. We went down in the morning to set up, we live right next door to the church so it wasn't far. Chris had a bad mucous/choking attack while we were down there and I could see he was not only distressed, but really embarrassed too as there were others there setting up. We went back home where he settled and he had a little rest while I made Christine and I some lunch. I did a short cough assist session with Chris before we left to go back down, so hopefully he would be OK there.

Thankfully Chris was fine during the afternoon. Mawgan is a lovely village and so many people were pleased to see Chris and came up to him and chatted to him, even though it was hard to understand him and I didn't see any one who looked awkward or embarrassed by that, they were all just lovely. I interpreted for him where needed. Chris still has yet to get fully up to par with any speech software, he has been too tired to practice. 

Christine's daughter came along too for an hour and we amazingly made over £127, including the sale of some MND Christmas cards. We also sold all of Chloe's single for £2 each, so that was worth the effort of making them up. It was lovely to catch up with them both and I was relieved it was worth their while coming along as they don't just live up the road.

Chris wasn't too bad when we got back, I think catching up with people really did him good. He settled down to watching Bonanza when we got home, he will always be a cowboy at heart.

As Tam and Karl are on holiday I asked Jordan and Tracey to come over to help me transfer Chris from his wheelchair to his shower chair. They came over around 9pm, so it was much earlier than we would normally prepare for bed. I guess we will have to get used to that once the carers start coming. I managed to get Chris from the shower chair into bed as he is able, just, to slide across. The bedtime routine takes about an hour by the time we've done the convene routine, set up his feed pump and normal bedtime stuff like washing and teeth brushing, so it wasn't too bad really. We don't usually set his feed pump going till around 11pm to midnight as it runs for 7 hours and we don't want the alarm going off too early in the morning. By the time I had sorted the dogs out and done my own bed time routine and both watched Casualty in bed, well I did, Chris fell alsleep, the timing was about right to set the pump going and to go to sleep.

All in all not a bad day with some money and awareness raised . Got to be glad for that.