I went in to see Isobel at half past twelve, she had already finished lunch, she had eaten three quarters of both courses. When I arrived she was very soundly asleep, she is usually very tired now after meals.
I tried to wake Isobel at half past one and again at two o'clock but could not rouse her. She was asleep when the doctor came at about half two, but he did not need to examine her. We had a long discussion in the nurses station. We agreed that the present rate of change was so rapid that within a few days Isobel might not be able to eat conventionally at all. He will start arrangements for a tube to be installed into isobel's stomach for feeding and supply of fluid. This was always likely to be needed at some stage but the rapidity of change in the last week has taken us by surprise. The tube is essential because Isobel is losing control of the muscles used in swallowing. It will take a week or ten days to set up the operation. The doctor confirmed that flexing, lifting and massaging Isobel's right arm was a good idea and should be continued but straightening the fingers was not worth doing if it caused discomfort (as it now does).
After the doctor had gone, Isobel remained asleep and I sat with her reading my book. Keith and Liz arrived to visit Isobel at 4pm. We sat and chatted while Isobel slept, then at about half four she woke up. Isobel understood who was visiting but was not able to speak at all apart from answering "yes" to one question. She fell asleep before Keith and Liz left at 5pm. I woke Isobel up again, this time without any difficulty, in order to get her ready for tea. I read to her from her book for about twenty minutes.
Iona had explained that yesterday she was only able to feed her mother by scraping food off the spoon behind the upper teeth. I found out that this this technique was needed as Isobel never opened her teeth more than about half an inch. Isobel was having much more difficulty swallowing and did not seem able to use the tongue effectively to mouth food around in the mouth. Often it was taking several minutes to deal with a single very small mouthful. In total the meal and drink took an hour and twenty minutes, the first course was about two thirds eaten, the desert was finished as was a beaker of tea. Isobel seemed very tired after the first few minutes. This was all far worse than on Tuesday and the value of the discussions then with the speech and language therapist already seem overtaken by events. After the end of the meal Isobel fell asleep.
In view of the struggle with this meal, I asked the nurse to tell the doctor tomorrow that I would like the tube installation to be expedited. A week ago it seemed best to delay this as long as possible; now it is urgent, it will make life easier for Isobel as there will not be struggles to get her to make the effort of swallowing food and drink when she is very tired.
I woke Isobel up at a quarter past seven and got her to drink just 100ml of orange squash; she could not manage any more. I read her book to her for about twenty minutes until she fell soundly asleep again. During this long visit Isobel only gave four single word replies to questions and did not speak any sentences. She did answer "no" when asked if she had any pain. I went home at twenty to eight.
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