So it's been really busy around here this last week. The good news is I was wrong about Arsenal letting Tom down. They beat Barcelona!!! Let's hope they manage to beat Stoke tonight. The other good news is that Roch and Tom have gone to the Emirates. Roch's disabled membership has come through. Good news at last.
Roch and I are sleeping downstairs now. I am gradually transforming the former sitting room. We have both slept really well every night so far. Tony helped Tom and me to move the bed last Thursday. The new curtains are up, with discreet voile panels to preserve our privacy (or as Roch would put it 'in case the neighbours see my ----!' What can I say? Opposites attract...
One or two of our favourite pictures are up and we have selected some photographs of the children for the walls. Little by little it is coming together and we are getting used to our new living arrangements. The new TV is helping to reconcile Tom to the change, but I know he misses his red sofa.
The bad news is that our last night upstairs was marred by a fall. Roch had been downstairs for something and then came back upstairs and went into the bathroom. Barefoot, he says he tripped over the big toe on his right foot and crashed to the floor. Thank God he didn't hit his head against the wash hand basin, but his head did strike the floor (wooden floor boards). He bruised his shoulder too. I heard the noise of his fall and leapt out of bed. Instinct told me to keep him where he was for a short time, until we established that he was essentially uninjured. Then it was a question of how to get him up. I certainly couldn't do it. I helped him to roll over on his front and he managed to get onto his hands and knees. He crawled to the top of the stairs, where he sat on the top step and then pulled himself up using the bannisters. Back to bed with a pack of frozen peas for the bump on his head. It was his first 'face plant'. He tells me this is what a face first fall is called in the Patientslikeme community. It may have been that the trip downstairs and back again was just too much. Perhaps we need to look again at the dreaded velcro fastening slipper option.
Our Community Matron came to visit later that day and we talked about this and many other things. She was really helpful. We talked about what to do if he falls again, and how at this point, we could use a chair so he could lever himself up from a kneeling position. I was happy when she confirmed that I had done the right things. I asked her to refer me for training for carers in first aid and lifting etc., which she has done. Even more helpful was our conversation about the stage we seem to have entered, where Roch can still walk, but risks falling. She was encouraging and felt Roch was approaching it with just the right attitude. It's about risk management, she said. You don't want to confine yourself to a wheelchair when you can still walk, but at the same time, it's foolish to take unnecessary risks. He is prepared to take the risk of falling by walking for as long as he can, using the rollator more, but using the wheelchair to minimise fatigue and for longer outings.
It is getting more and more difficult for Roch to do the things he used to do - shopping, helping round the house. He feels this keenly I know. Gradually all these tasks are falling to me and I know he worries about this. It's hard for him because he prided himself on how we were a team in this way. We are still very much a team I would say, even though physically he is less able. It is tiring and I need to learn to leave things, prioritise and delegate to Tom a bit more, establish some routine chores he would be willing to undertake (ah there's the rub!). My lovely friend Carmel spent the weekend with us and was full of advice about labour saving for me! Thank you, dear.
I just want to remind my readers that one of the reasons I write this blog is to present the situation from the viewpoint of a wife and carer. If I do not write about how Roch is feeling, it is not because I am unaware that he is going through hell and feeling it. It's just that this is written from my point of view, which is just as valid and who knows? It may strike a chord with other carers. I don't pretend to know exactly how and what Roch is feeling, although I believe we are honest with each other. Even if I can guess at how he is, it is not always my place to record it here.
How am I feeling? Sadder. I feel like the monkey is catching up. For so long we were ahead of it, but it's close behind us now. Filthy little primate. I would like to end this post on a positive note, but if I did that, it would feel false to me. Let me be honest with you. I am too tired and sad to be positive right now. So I am off to eat soup and have a bath and hope that Arsenal can pull it off for Roch and Tom tonight. It's the best I can do for now.