Tuesday, 30 July 2013

Tired but hopeful

Wide awake again in the middle of the night so I thought I'd take the opportunity to update you on how things are going in brain injury land.

Works on the new Korving Towers are progressing well (it's looking fabulous!) and we are moving in next Monday.  New tenants have been found for the current Korving Towers and everything seems to be slotting into place, including the all important transportation of the Imp of Doom.

Moving house is stressful at the best of times and this is most certainly not the best of times.  To counter this I am doing everything possible to minimise the impact including having a full packing service from the removals company, which sounds great in practice, but there is something really unsettling about a bunch of hairy arsed blokes packing up all your belongings; I'll probably pack my own knickers!

Jake has moments of calm clarity when he sees that this move is a very good thing for all concerned.  Sadly these are the exception and he is mainly frightened by the prospect of change.

Due to the nature of his injuries Jake struggles with change both emotionally and cognitively.  It has taken 6 months of a carefully managed and structured errorless learning approach to get him to the stage where he is almost self sufficient in his morning routine, needing only minimal prompting and assistance to get up, showered and dressed.  When we move to the new Korving Towers, despite trying to mitigate the impact by reflecting as much as possible the decor and layout of our current home, Jake will lose some of that learning because the visual and procedural cues will have changed.  He will also have to relearn where different rooms are and be confident about where he should go when and what for.  Sounds simple? Think again, it's taken months for him to get to that stage where we are now. It's not surprising that he's on edge.

This means a rocky road ahead as it comes at the same time as a sudden increase in insight and therefore understanding of the magnitude and impact of what has happened to him.  The worst aspect of this is his belief that I'd be better off without him and his attempts to push me away.  He is REALLY good at pushing my buttons and this usually ends in an upsetting exchange quickly followed by a rush of regret and panic from Jake.  This is very distressing for him and he needs loads of TLC, patience and understanding right now, so if you're his friend and in the area do pop in and see him, it would definitely give him a boost.

The good news is that he's achieved so much at the current KT and so we know that with the right support and a bit of time he will do the same at the new KT. The extra space will make a massive difference to us both as will the week in Gran Canaria with good friends and family at the end of September, so its short term pain for what will hopefully be long term gain and better times ahead.

Next week also sees the full review meeting to assess how Jake's NHS funded intensive rehab programme is going and where we go from here, so there will be lots to update in my next blog.  Hopefully I'll have slept before then!

Friday, 12 July 2013

40 sucks

This might sound pathetic, but I am feeling very sorry for myself right at this moment.

You see it's my 40th Birthday this weekend. Aside from the obvious feelings of impending old age and the sagging of, well, everything, I am sad because my husband isn't interested.
With some cajoling and Starbucks related bribes he was encouraged to go out with his PA to buy me some gifts, but he wouldn't have done this if I hadn't arranged it. I also arranged for him to make me a cake which, sadly, he couldn't really be arsed to do. I had to contact his deputy to suggest that it was reasonable to assume Jake might have bought me a special gift and could he liaise with Jake's sister...and then I had to ask her to remind him. I told Jake that lots of people were coming to celebrate with us tomorrow and he said 'I might come out for a bit'.

This might all sound petty and you might be thinking I'm ungrateful because I still have a Jake and he is better than anyone expected. But it's my 40th Birthday and I'm having to sort out my own catering, cake, bunting, invitations, etc. etc. etc. because my husband can't do most of it and it wouldn't occur to him to do what he could. Frankly this is heart breaking and makes me feel like shit. Sorry and all that, but there it is.

Having to provide endless love, support and care to someone who, most of the time treats you like staff is in a weird way made worse because he doesn't realise he's doing it and really doesn't want to hurt me, because then I can't even be angry at him. What a stupid bloody situation.

I am also sad because my husband isn't really interested in anything. Since his shunt revision we have started to see what was really going on and clearly his shunt had been failing for some time. A lot of this has been very positive with small but definite improvements in most areas. Unfortunately, some things have got worse and the extent of his frontal lobe damage is worse than initially thought. He is thoughtless and rude one moment and remorseful the next. His motivation has evaporated and so he spends all day in bed, doing the bare minimum and immediately losing his temper if you try to get him to do something, even if it's something you know he'll really enjoy. His perseveration has got much, much worse and sometimes he gets so stuck on a subject or thought you can see his confusion and frustration escalating as he obsesses, powerless to stop. This never ends well.

I completely realise that this is horrible for Jake, but it is also utterly exhausting and soul destroying to have to answer the same question again and again for hours, knowing that, due to his language and cognitive issues, he is probably unable to hear or focus on the answer and will continue to obsess and continue to ask.

This apathy, lack of caring and indifference terrifies me. It is so alien to the Jake I married and fills me with dread for the future.  So right at this moment my considered opinion is that 40 sucks.