Chris has been deteriorating daily at a much faster rate for the past month now. Everyday he is that bit worse, especially his breathing..oh that scares me the most, hearing him struggle to breathe. It is not a bubbly breath accompanied by a cough, just a weak inhalation and expiration, a constant, laboured grunt. It is one that spasms and frightens him so much and now it seems it his diaphragm that is giving him spasms. A dissolved lorazepam in a drop of water placed under the tongue seems to help with that, but it is still scary for him.
Yesterday was the first day Chris did not want to get up. He is so very weak now. Yesterday he truly scared me. Up till now whenever I ask him if he is OK he has said yes, yesterday he said he didn't feel too good.
He wanted to see his sister so I gave her a call. I updated Chloe as I was a little scared we were losing him. I think I must have really frightened her as she wanted to come home, she was visiting her boyfriend's family. They kindly sorted the insurance out for Tom to drive the car and they left from Surrey straight away. Chloe literally turned up in the clothes she was wearing and nothing else! Knowing she was coming home perked Chris up no end though. It was just what he needed.
The carers came in the morning and didn't pull Chris around too much. They spent the day trying to get the district nurses to come out with a blow up ripple mattress, which they did in the afternoon. Two of them came, one blew it up. They then left and said the carers could put it in later, not quite sure why they couldn't do it. They didn't check his pressure areas or anything.
My daughter-in-law Tracey stayed with me during the day, I confess I spent most of it holding Chris's hand and crying while he slept. Around 5ish Chris said he needed the loo, Tracy helped me with the hoist and thankfully he managed to go. I was a little concerned though as it looks like he is developing a pressure sore on his bottom!! I wasn't happy to see that. I applied some Conotrane cream. He also wanted a wash and to do his teeth and then I teased him as I realised he wanted to look nice for Chloe. While Chris was on the loo Tracey put the blow up mattress on his bed.
When the carers came I told them to check Chris which they did. They said they would bring some special stuff in the morning that is like a second skin to protect him. How typical these things happen on a bank holiday weekend. This air mattress isn't likely to get here for a couple of days yet. They made Chris comfortable and also used those lollipop things to freshen his mouth.
Chloe arrived home and Chris was so pleased to see her, it really made him smile.
Chris has always written a diary since he was a child. It isn't full of heart felt emotions, just what happened during the day. For the first time he asked me to write his diary for him. Even that is too much of an effort for him now.
I wake so many times in the night and panic, is he still here, is he still breathing? I am on edge. How long does Chris have? who knows. Sometimes it feels like hours, other times days, maybe still weeks yet, you can never tell with this beast of a disease. All I know is the progression is now relentless and it is scaring the crap out of me.
One minute I am praying that my boy doesn't leave me and then I look at him sleep with his laboured breath and I just want his suffering to be ended. Such a contradiction of emotions.
Then I think, 'Let's just get through this, one day at a time,'.
Lastly though, I asked my Facebook friends to say a prayer for us yesterday and they did in abundance. I don't have much of a faith these days, but it was so heart warming and comforting to feel so much love and support from them. Thank you to all of them.
