Monday, 10 September 2012

This game sucks

The problem with a brain injury recovery journey like ours' is that as soon as the choppy waters seem to have calmed someone lobs a bloody great stone in.  

As you will remember, Jake was due to be moved off the behavioural pathway and on to the main rehab pathway; viewed as a good move by all.  The plan was to make this move in a graded transition over 2-3 weeks so Jake would have the chance to get used to the new environment, build new relationships and understand what was happening before moving permanently.  Sound sensible?  Yes, we thought so too.

Unfortunately, due to a surprise visit from the CQC who insisted on another patient being moved onto his ward (which was full), Jake was moved at 9pm the Friday before last, with no warning and no graded transition.  Err hello? Jake has a severe brain injury, struggles with change and finds it very difficult to form new relationships. Brilliant.

Add to all this the fact that he was moved to a ward where many of the other patients deficits were significantly more obvious than he'd seen before and therefore very frightening to someone who doesn't really get that he has a brain injury and you can imagine how confused, upset and terrified he was. Cue a return to the bad old Boot Camp days with Jake getting very distressed and begging me to take him home.  

Up to this point the rehab hotel team had only seen the lovely, cuddly version of Mrs K and so I think they were a bit surprised by the 'mess with my husband and feel my wrath' Mrs K now showing her teeth.  The upshot of the discussions that followed this change in my demeanour on Monday being that Jake would be moved the next day to a brand new ward which is quieter and much more focused on promoting independence.  I took Jake over to the new ward explained what was happening as much as was possible and we were all set.

So, the next morning I arrived, reminded Jake of the move (which he seemed to be happy about) and we sat together on his bed waiting for the team to come and help us.  Then a nurse arrived and announced "we're not moving him, the PCT won't fund it".  I'm ashamed to say I went ballistic. I told the ward manager that I was taking Jake to the cafe for an ice cream and when we came back we would either be moving to the new ward or going home, both of us.  I also rang the PCT and was less than polite to the poor woman that answered the phone, but I'm trying to forget about that, it being less than my finest moment.

So, as weeks go, it wasn't turning out that well.  And then my phone rang and it got worse, on a major scale.

The criminal case (you know, the one that has to happen before we can move forward with the civil case and gain any view of our future) has been postponed again...until NEXT YEAR!

At that point control slipped from my fingers, all of my defences crumbled and I just sort of stopped.  It was weird; I felt as though all my senses had shut down and everything was just white noise for a few seconds. Then I remembered that Jake was there and he needed me.  Don't get me wrong; I'm not a machine and I balled like a baby, but I realised I had to get grip.

So, today Jake is safely installed in the shiny new ward (the nurse was wrong, the PCT just wanted to clarify why they were moving Jake again to make sure it was in his best interest - when will these people get communication skills training?), I am getting my head around another 3-4 months of uncertainty and everyone at the rehab hotel is working together to try and help Jake adjust.  He's finding it very difficult (refusing to eat or engage...sound familiar?), but they're throwing everything at sorting it, so hopefully he'll be settled again soon.

And so we go on.

Between you and me this brain injury game is rubbish - I'd stick to Monopoly or Twister if I was you.


  1. Oh poor you. How hard for you both. It's hard enough dealing with a brain injury without all this thrown in too. Thinking of you both

  2. Awww... You are right -- not a good week at all! It all seems to have worked out, but what a toll this snowball of a situation must have taken on you and Jake! Hang tough, Charlie. Sad but true that sometimes those of us who are usually reasonable, cooperative, logical, and methodical in our dealings with "the system" have to "go ballistic" to advocate for our loved ones who can't speak for themselves. Jake is so very lucky to have you fighting for him.