Ok, so part of the learning curve has already begun. Colin has a fever of 39.9, and they had just started him on a new antibiotic this evening to try get the temperature down, and of course, the tube from the ventilator is not pleasant. He was trying really hard to tell me he loved me, and ask me to scratch him, to move the position of the pipe in his mouth, to put lip ice on, and other things, and it is very frustrating for both of us. He cannot even make a sound at all, so I cannot even listen very closely, and since he is stationary and immobile, I can’t really get a great look at his lips in order to lip read either.
To compensate, and perhaps to make myself feel better, I was stroking his hand, and rubbing his arm, and scratching his head. But, perhaps out of anxiety or nervousness, I was doing it too consistently in the same place, and it was irritating him. Eventually, he was able to get my attention by moving his arms in a agitated fashion, and pulling a face at me. I will be honest – that almost broke me. I had to very quickly go to the tap to rinse the facecloth so he wouldn’t see me break down and cry.
He is not feeling well at all, it must be painful to try turn his face to meet our gaze, and then he has to sort of get agitated before I realise he wants me to just stop what I am doing, which was meant to be a loving and comforting thing. I think part of it was that I kept re-wetting the facecloth and putting it on his forehead – he felt very hot to the touch, and it was helping him, but then I think I was pressing too hard as well.
This is a situation that is so difficult to negotiate. I don’t know the rules, and there don’t seem to be any that I can sort of read up on. He is awake, and I was so elated earlier when I saw him open his eyes, but it is really difficult to try guess what he wants, what he doesn’t want, where he is itchy, where he is sore, exactly where to stand so he can see me, how softly or firmly to press on his forehead when applying what was meant to be a loving cold compress, and so on. Then to register the pain on his face and his agitation, and even anger at what was meant as love – is very difficult.
He was never one to enjoy being fussed over, and this must be so difficult for him. I am also torn between wanting to be there 3 times a day, at each visiting time, but not wanting to face the awful traffic and fair distance I have to travel to get to see him. He did say to me that I don’t have to feel like I need to go all the time, or even every day, but I am not complete without him. He is my other half, and I have learned to have some little insight into what it may be like to lose your spouse completely.
There are always people better off, and those worse off than yourself, and I find that although I know it to be true, it gives me little comfort. I don’t want to have to be grateful that it was so bad but not worse. I wish it had not happened at all. Not to us, and not to anyone.
These sorts of things are so difficult that one can never be prepared for them, and we don’t know what to say to others when they are in these situations either. I am completely overwhelmed by the support I have received, and I know absolutely that every person who said it, meant it, when they said I should let them know what they can do to help. But I am also completely overwhelmed at how little I am coping in this situation.
I seem to be in a brain fog, and fluctuate between wanting the calls and hiding from them. My Dad has been helping me with practical advice, and writing lists for me of things I need to think about doing. He is amazing. But. I have not had a moment to myself since Friday, except when I am asleep. I understand why, and am grateful. I also need a breather. Please do not misunderstand me – I am not ungrateful to you all, and am thankful beyond what you may ever know at how you have all rallied around me, but I need to be able to just breathe.
This evening, I am grateful I can breathe on my own, unaided by machines, and without a tube down my throat. I am grateful that Colin can breathe because he IS aided by machines, WITH a tube down his throat. I hope to soon be grateful that he doesn’t need the machine anymore.
I miss you Colin. More than I would have thought possible. Rest well, and deeply; and regain your strength. I need you here with me.