Wakeful restless night. Listening out for Robin when he coughs, goes to the loo, in and out of bed as he goes upstairs to play on the computer.
8am - I ring the Speech and Language Therapist. She strongly recommends a "Fork Mashable Diet". Coughing on dry, crumbly food causes the choking and hyperventilating and scariness. Which means no biscuits....or crisps or nuts or sweetcorn or anything whole and fibrous. I explain it all to Robin. And to lovely Age UK worker who comes to take him out. Suggest soft moist cakes instead.
My sister arrives for de-cluttering and moral support. We drive to Sainsbury's ,buy bananas and carrots, tortellini and veggie sausages, raspberry yoghurt and coconut cakes. I mash up last night's left over veggies with egg mayo and avocado for Robin's lunch. Child-size portions now as he always says he doesn't want very much. When he comes back it turns out he has insisted on eating a biscuit with his tea. But didn't choke this time.
Much later my sister drives away - her car loaded up with boxes of our books, old videos and cassette tapes, cameras and candles and the unexamined, accumulated contents of a big storage chest in the dining room. Getting ready, making space for the changes that are coming soon.
Even later, while Robin sleeps after his outing to Branscombe, with lovely PA, Archangel M arrives out of the rain and sits at the table with me. We have tea and flapjacks and go through the long complicated application forms for CHC funding already filled out by the community matron making alterations and suggestions about how Robin's diseases affect him, what care he needs and if he has the capacity to understand and retain it all.
Yesterday I went to the Solicitors and collected copies of the Power of Attorney forms we signed at the beginning of all this. It was in March 2011. It's so odd to see the confident flourish of Robin's signature in black ink. I never imagined in a million years that 5 years later he wouldn't be able to hold a pen let alone write his name.
Must get some sleep now ....and trust he'll breathe safely though this particular night.... till it starts all over again in the morning.
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