We have had some really interesting times with Jamie – very challenging but he continues to surprise us by understanding so much – and trying so hard to do the right thing.
He has suffered so much with his seizures; clusters of 3 or 4 in a day, or 24 hour period, sometimes beginning with one in the evening and then carrying on to the next day. That is so worrying – we can’t help but sit and panic that he will have one while he is asleep – everyone’s worst nightmare. At least, even though the morning seizures are often when he is the bath, he is so carefully supported by his staff that it is highly unlikely he could hurt himself, so worse, drown. This is one of the biggest killers from epilepsy – I don’t forget this!! Also dying from a lack of oxygen whilst asleep. We will keep you safe Jamie, as safe as we possibly can.
That’s not a very positive start is it – but honestly, overall we are really pleased with how Jamie is doing. He seems much more settled, he loves his own space in his flat – and the fact that he can push people out if he doesn’t want them there!! (I get pushed out pretty quickly when we come back after Sunday lunch). He even shuts his door on our way out on Sundays, so that no-one can go in. I think that that amount of mental cognition is pretty remarkable in a person like him – but then we have always said there is so much that goes on in Jamie’s head that we don’t know – or he doesn’t want us to know!!
I have had to leave this for a while – work was just to intensive – exam and end of module marking, there was no time for anything else. But now I have some time, and I have been thinking about Jamie and the problems he faces in his life so much. It is a good to get my head around his behaviour, especially when we can work in close consultation with the support staff at his residential home.
Lately Jamie has been binning all his food – or most of it. This is even food he normally likes. He has got quite thin and we can’t work out why he is doing this. He also had been self-injuring, banging his head quite violently, not all the time but more frequently than usual. I spoke to one of the managers yesterday and we discussed how Jamie’s behaviour is pretty typical of someone in pain. But what it is we don’t really know. It could be – tummy ache from his ongoing problems with constipation; toothache – he is not the best at cleaning his teeth and also one of the side-effects of one of his epileptic medications is receding gums (of all things!!); headache – his head must feel weird with all the seizures he has – something else we haven’t thought of ?? ….. We will get to the bottom of his problems, however long it takes! The doctor and dentist have both seen him, both put forward ideas although I am not sure that they will work. We shall see!
Jamie has also not been sleeping well. When he was a child this was such a massive problem – he would go for days and days on just a few hours sleep. I used to walk around like a zombie!! As his routine gave him security and made him feel safe, he began to sleep better. But now he seems to be awake for a lot of the night – is he in pain? Is he anxious? We do need to get to the bottom of his problems, to try and work out why he is distressed and anxious.
On a positive note though, we are in absolutely no doubt how much Jamie loves his Sundays with us and how much he loves going to the pub for his lunch. A few Sundays ago, when he had been awake most of the night and he was looking particularly rough and almost ill, we took him out as usual. But on the way to the pub, Jamie got really upset and started headbanging in the car. So we thought he is telling us he doesn’t want to go. Instead we stopped at a supermarket and got him a picnic. While I went to get the food, Jamie stayed in the car with Andy, but he got so distressed and banged so hard, we just thought we would go straight back to his home. While we were driving back (Jamie stopped banging straight away – as soon as the car was moving!) Andy and I talked about our Sundays, and perhaps Jamie was not enjoying lunch in the pub anymore, perhaps he wanted to do something different. Anyway, the next week, Jamie couldn’t wait to come out with us, he was on his best behaviour and really, really enjoyed himself – he ate all his lunch and had his favourite sweets as a reward for being so good, as he always does. Since then his behaviour has been really really good on a Sunday. Voting with his feet meethinks – I am in no doubt how much he treasures his Sundays – as do I. I live to see him, especially when Sophie is there as well. I miss him every day, having good Sundays with him, and knowing he is happy are the things that make him living away from home bearable. When he is in pain or upset is it very hard for us his family, but hard for his carers too. We will work together to make things better for him.
I hope he knows how much I love him , but I’m sure part of him does 🙂