So its been about 3 weeks since my last post, Mum was/is doing really well and was having so many good days that they decided to reduce the Midazolam to try to get her off of it. That went well for a few days, until she got down to 7.5mg and then she started sleeping a lot more (which we were expecting because of the phenytoin that they started her on again), but the amount of seizures also increased so I suggested the nurses increase it again slightly, and they agreed.
She's now gone into a very demanding and almost OCD like stage, which is proving to be hard work! She will ask for a cigarette literally every 5 minutes, you can guarantee she will need to use the toilet every 20 minutes, and then its food and drink in between and sometimes even at the same time. For example she was sat on the toilet earlier asking for a cigarette and a cream cake, and she wont stop until she gets them!! Seizures are still there, but have calmed down for now so we'll keep her on 10mg and see how she gets on.
I'm starting to feel myself struggle with everything now, both Mum and Dad appear convinced that she is improving, and while I will never stop them from thinking that way, I cant bring myself to think in that way, I guess my coping mechanism has put up a wall and I can only look at facts now...but it appears to me that the drugs are controlling my mum and are probably keeping her alive, I don't want to be negative and I don't mean it in a negative way, I'm just going by what I have seen and what I know.
So now my Dad wants her to go on trials, and is even talking about getting her walking frame out, and it scares me because not only is my Mum far from that stage, but I'm worried that he's built his hopes up and he's going to crash really hard when the bad days arrive.
I get frustrated when my sisters or other visitors come round because Mum will still call for me, and they will let her! And then they all think I'm being 'funny' with them when I say to Mum 'they can do that for you', but as soon as it comes to giving Mum a bed bath, wiping her bum (if she cant do it), cutting her toe nails, and all of the other jobs like that, my sisters literally run a mile! I've asked them to help or to do it, and they've said no!!
I don't want to get frustrated with Mum or anyone else (hence I write on here!!), but its getting harder. My life isn't in the UK so taking a break and 'getting away from things' isn't as easy for me.
This disease sucks :(
