Friday, 21 August 2015
No. 236. 'Feeling miserable.'
OK, having carers helping out is great I guess, I can't quite relax with them here yet, but I expect we will get used to it. They don't do things a 100% as I would do them, but that's OK, it's nothing major. The main supervisor came as one of the carers and they were both really having problems getting Chris dressed too. She said he needed a different type of hoist harness, one where the legs are strapped separately. She tried really hard to get hold of someone who could help with getting one urgently, but I'm not sure if she was successful. At least it is not just me who has problems.
The carers come morning and evening, but that doesn't mean Chris doesn't need to use the hoist in between times. He often needs the loo mid afternoon, so I have to do that by myself, sometimes one of the boys are around who can help lift Chris, but other times like today, there is no one. I manage, but it is a struggle and I found myself getting pretty tearful as I felt useless, but my tears were mainly for Chris, to see him so dependent in every way, at times I can't bare it. It is hard work too, I won't lie, but we get there in the end.
The Script Easy advice nurse has sent down some samples of other penile sheaths for Chris to try, one is designed especially for wheelchair users. He is going to give them a try to see if they perform better than the Convene ones. Too long winded to explain here, but the problems are caused by gravity and back flow.
Chris has been feeling pretty miserable today. His breathing problems, the mucous episodes, having strangers help to get him washed and dressed, me having to tend to his most intimate needs, he is just miserable and I don't blame him. He said at times that he has had enough. I would think anyone would feel like that in his position.
Chris can't get to the sale tomorrow as the weather is going to be bad and our car won't get into the field. The damp weather seems to play havoc with his breathing now too. We aren't entirely sure now that he could even get in the passenger seat of a 4x4 as he can't support his own weight at all. All this adds to things.
I wish I could make him better, I wish I knew how to make him feel better. It is draining for both of us.