The day has seemed so long, I can’t quite remember the order of all the various happenings.
Last night was peaceful after all the initial difficulties of getting T to take his medicine, getting him out of his chair, out of the bathroom and into bed.
I awoke around 06.00 and I was surprised to find T in the bathroom. I think he had been there a while and he was just sitting on the loo with closed lid. Waving a shower cleaning brush and a pink cloth.
It took me a while to get him back to bed where I managed to get the important medicine into him, despite initial resistance. The syringe was not well received.
He was very confused for quite a while this morning and not receptive to eating or drinking. We have been told not to worry about eating but to try and keep fluids up.
Our trip out today to Blenheim Christmas market and light trail was in jeopardy: I doubted that T would be well enough; the day had started very wet, although the afternoon was forecast to be drier but with wind. I would decide later.
I also managed to get his routine meds into him mid morning.
Ali and Fleur called round after 11.00 and worked minor miracles. And cheered him up.
Tina took a rather ungrateful H out at some point for quite a long while around the Rec.
Tina and I watched more of Chris Packham’s Inside our Autistic Minds video and I fell asleep. T was also having a little sleep. And then Tina engaged him in rugby conversation.
Behind the scenes, and at distance, the girls were fussing over T’s mood and had unbeknownst to me, called the Sue Ryder nurse team.
The visit to Blenheim clearly became a non-starter. Luckily I had cancellation insurance. And then I read the small print… exclusions included pre-existing medical insurance. Bugger!
We received an unexpected visit from a nurse we had not met before but who was delightful. Tina had been talking to T about the great rugby player – JPR Williams. When the nurse popped in to see him, he rambled on incoherently about JPR, who must have meant nothing to her! T had rallied by now and was quite cheerful as sod’s law works.
Following her visit, he rallied even more, and got up for a few hours after she departed. Tina and I had jacket potatoes and tuna mayo for lunch. And I even managed to get a few spoonfuls into T by hand-feeding him. That was a surprise after his refusal to eat for a couple of days.
Around the time we should have been at Blenheim, a text popped into my in box. From See Tickets – the Blenheim ticket sellers. The evening lights trail was cancelled. Due to high winds. Bingo! Bugger their cancellation exclusions! Our £150 would be refunded. Sad to miss it though – it was one of those experiences we had planned to give him. And now it won’t happen.
We put Mamma Mia on the box which raised his mood even more. He loves that film which made it worth every penny of the £6.50 I had to pay for it. Nowhere could I find it free to view. MM 2 aka Here We go Again – yes, free, no problem .
He then ate a little Tiramusu and chocolate gateau. I felt I just had to give each of these the taste test but no more than that. Tina tucked in with gusto.
By the time Pen and Evie called round after a trip from Devon , T was the soul of the party . Just before they left, Pen decided to get him back into his bed thinking it would make life easier for us later. Which it probably was. And we joined T in watching TV in the bedroom. This time, it was MM2.
So it has been a strange old day … I find it hard to deal with all the changes in mood and urgency that are going on at the moment. It’s such a hotch potch of changes from really difficult times, to almost reasonable. Knowing what the future holds but not the how, where, when.
Thought for the Day
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