Till Tomorrow

Neil has asked me to write a quick post, just to let you all know that he’s had a bit of a difficult day and is too tired to write. His swallow has been significantly worse today and it’s been an effort to get any food down without a choking fit. Today he’s eaten half a tin of tapioca for breakfast, an egg custard for lunch and the other half of the tapioca for his dinner. I think it sums up his day.

He’s also suffering from a temperature which started just before we put him to bed. I’ve just seen Pat, our night sitter for tonight, on her way to refresh the cold flannel for his forehead. She was also being sent down the hall to tell me to go to bed. I will obey my orders,

Till tomorrow
Louise x

Reading this post brings back the jolt of fear, the shortness of breath that grief brings. Sometimes the changes happened with terrifying speed and took most of the day to find a way of coping. I wrote this very tired after midnight, but scared to go to bed incase he wasn’t there in the morning.

food_320.jpgI took this photograph after trying to give him dinner and failing. All I could think of to give him was mashed potato and a lot of gravy to help it go down. I look at it and find it almost too graphic to share now, because I know now that it was the last meal I prepared for him and he could only manage a couple of mouthfuls before we resorted to the tapioca. When I took the photograph I was upset, I wanted to show exactly what this disease does to a person.

Writing this post was all I could do to relieve his stress, it had become so important to him to keep up the blog; while he was still communicating, he was still able to feel reason to keep living. – Louise (2013)

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@breathingfilm tweeted this page. 2013-06-17 21:05:12 +0100
Louise looks back on her #Plattitude post, 'scared to go to bed in case he wasn’t there in the morning.' #MND #ALS http://www.iambreathingfilm.com/till_tomorrow?recruiter_id=2
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