Till Tomorrow

Hi,
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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Showing 3 reactions


commented 2013-06-17 22:52:26 +0100
thank you Louise :)
@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
commented 2013-06-17 21:04:20 +0100
Comments on Louise’s original post:

Sara
February 21, 2009 at 12:44 am
Sleep well Neil – hope you are feeling better in the morning.

Louise, I know it’s hard but try to get some rest.

Love, as always,
Sara x x

Em
February 21, 2009 at 1:05 am
Thinking of you both with lots of love. Really hope you feel better Neil after rest…and you too Louise!
Emxox

Julie
February 21, 2009 at 4:25 am
Hoping so much that there is far better news tomorrow. Love and warmest blessings to all of you.

Brian
February 21, 2009 at 11:14 am
Neil,

Stay strong, mate.

Love

B&G

Lorna
February 21, 2009 at 11:54 am
Hello Louise,

I hope you and Neil had a decent night and that today holds a better day in store for you.

Thinking of you all as always and reading every day.

Much love and affection,

Lorna

buddy
February 21, 2009 at 2:06 pm
Hi, you guy’s.
I hope Neil and all of you get the rest you need. You are,
always in our thoughts.
Love and best wishes to you all.
Neil. X

Gill
February 21, 2009 at 2:55 pm
Hoping you both have a better day today.

Courage

x

Lisa Stefanski
February 21, 2009 at 6:20 pm
Hi,

We do hope that you are feeling better today Neil..that your temperature has come back to normal and your swallow has improved.

Thinking of you always,

Lots of love,

Rick, Lula, Jenson & Jake xxxx

Lu
February 21, 2009 at 9:23 pm
Good night god bless to you all, lets hope tomorrow brings a better day!
Sweet dreams
Lou Mc
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