Thursday, 31 May 2012

Back on the rollercoaster

I have just realised that it’s been over 2 weeks since my last post.  Sorry about that, I shall try to make up for this by making this one a meaty one.

The last fortnight has been characterised by some amazing highs, more interminable waiting and some frankly shitty lows.

We are still waiting to hear about the named patient programme funding for his next move.  The options are; we don’t get the funding which would mean going back to the drawing board (the general consensus is that this won’t happen); or we get the funding and then the decision will be which rehab unit we are given.  The choices are a general neuro unit in Boscombe and a brain injury rehab unit in Exeter. The best place for Jake is undoubtedly the Woodmill in Exeter as it is much more specialised and better equipped to deal with the behavioural challenges that are emerging, but we would be happy for him to gain funding for either of these units; he is incredibly unhappy in the acute hospital setting which is contributing to his deteriorating behaviour.

Talking of which, mardy Jake has pretty much taken over.  I wasn’t sure whether to share the extent of this, but if you are reading this blog I am going to assume that you care about Jake and me and therefore you will see this as part of our journey and not judge based on this one stage.  Jake has started to come home mid-week for an afternoon to try and alleviate how unhappy he is at the moment.  These visits go well until it is time to go home and I am gutted to say that today I have bruised arms where Jake’s anger and frustration bubbled over.  If this had happened before the accident I would, quite frankly, have kicked him out.  But it isn’t my Jake doing this, it is his injured brain.  I’ll be honest with you, I feel completely inept and helpless to deal with this, which for someone who is used to always finding a way around problems is completely defeating.  I tell him how angry and upset it makes me and he usually says sorry afterwards and seems genuine; yesterday he was very upset about what he’d done so I told him that it wasn’t him it was his injury and he replied ‘no…no excuses’, so he clearly understands on some level.   

The main problem with this change in behaviour is that it has stopped him from co-operating in his rehab.  Basically he is taking control back by refusing.  Refusing to join in, refusing to try, refusing to get up, refusing to eat.  This is both frightening and unbelievably sad because everyone agrees that his potential is huge, but if he doesn’t make the most of these opportunities now it will impact on the quality of the rest of our lives.  The next move will be crucial for Jake’s progress and in two weeks we should have the decision on the funding; please pray / wish / hope that we get the right decision.

It’s not all bad news though and the amazing high was Jake’s Birthday BBQ.  If we are friends on Facebook you will already know this, but it was a perfect day which culminated in a truly magical moment…and me sobbing like a child!

The sun came out, our friends travelled from far and wide and Jake was in excellent form.  He was chatting away, coped really well with the number of people present and even had lunch at home for the first time.  He blew out his candles and was clearly having a wonderful time when he started to get agitated.  Normally this means that he is overstimulated or tired so I attempted to encourage him back into the house, but it would seem that this time the agitation related to a desire to be on the patio where his best friend Mike was fulfilling the role of BBQ maestro.  We were sat on our deck which is almost the full length of the back of the house, leads straight out from the lounge and has three steps down to the patio and the rest of the garden (sounds much grander than it is!).  In response to my trying to wheel him backwards into the lounge Jake grabbed the table we were sat around and started to pull himself forward, towards the rail that surrounds the deck and, more worryingly, the steps!  He reached the railing and started to lift himself out of his chair and as usual, his amazing friends Mike and Andy were on hand to help and rushed forward to support him on each side.  He gripped the rail and STARTED WALKING towards the steps.  Yes, I did say walking.  Now, keep your pants on, he was being held upright by the chaps and he would in no way be able to do this without that (his right foot and ankle are still a real problem), but the determination on his face was exhilarating.  Oh, and then he went down the stairs!  I wailed and sobbed like I was in a particularly bad amateur dramatics production of a schmaltzy melodrama, though I know I was not alone in shedding a few tears; apparently dark sunglasses can be very useful!

He then sat on a chair on the patio and looked very pleased with himself, which let’s face it, is fair enough!
He went back to the hospital without any drama and I and everyone else at Korving Towers got satisfyingly drunk (again special mention goes to Andy and Mike who were both spectacularly squiffy!).

I will try and be more constant and prompt with future blogs, in the meantime pleas keep doing what you do to send your hope to us.  It makes all the difference.

Sunday, 13 May 2012

Dr Jekyll & Mr Hyde

OK people, enough already, I know I haven't written a blog for a while!

There is no nefarious reason for this; just a very busy couple of weeks. This is weird if you think about it as I am now on sabbatical and should therefore have more time. I have concluded that now that I am not sitting in front of a laptop for 5 hours a day I am less likely to have the blog mood take me. I promise to address this and return to weekly updates.

"Hey Charlie, what have you been up to?" I hear you ask (maybe). Well, there's been gardening, walking, shopping (Ikea rocks!), mass cupboard clear outs, oiling the deck, meeting up with work friends, laptop purchasing and set up, entertaining visitors...oh yes, and supporting Jake, which is what you really want to know about.

He's having a bit of a plateau at the moment, so there isn't a great deal of new stuff to share. This is perfectly normal and reflects the expected rehabilitation journey of short periods of improvement followed by longer periods of consolidation. We've been very fortunate that the last two months have seen steady and significant improvement, so this more static period has been overdue.

The good news is that Jake is now getting all of his nutrition through feeding himself a pureed and thickened liquid diet instead of through the tube in his stomach. He is not overly impressed that he can't have water or normal food yet (his swallow, although strong, is slow to initiate so water goes down the wrong way and more solid food could get stuck) and on Friday he looked at the other patients' normal food and announced that he wanted 'that version'. Bless!

The mixed news is that we have entered a period where Jake is beginning have more insight into what is happening to him, but without the ability to really understand it. On the one hand this is great because it indicates that he could go on to gain full insight and understanding. On the other hand we now have a properly mardy Jake, whose confusion and frustration often tip over into anger and aggression. Again, this is apparently a normal part of the journey and we have been warned that it is likely to get worse before it gets better. They do at this stage though believe that it will get better; I won't lie to you, it's bloody awful so this is a relief. I have to work very hard to remember that the person lashing out at me and telling me to f*** off is not my Jake, it is the Jake with a severe brain injury. My Jake is still in there, he is just overwhelmed by the injury at the moment. Sadly, this change in behaviour could put paid to the plans for hydrotherapy and the exercise bike as this may make it unsafe. Hey ho.

Mardy Jake is fortunately balanced out by windows of my lovely Jake; my husband and best friend is still there and in the rare and precious moments where he breaks through it is magical. Yesterday I decided that, rather than having someone there to help with the home visit, I would ask my lovely neighbour to be around and available if I needed her. This meant that Jake and I were truly and completely alone for the first time in six and a half months and boy what a difference it made. Jake was the most relaxed and contented I think I have EVER seen him, including pre-accident. We transferred him into his armchair, put his feet up on the foot stool, put a blanket over his legs and arranged a pillow behind his head...and then he sighed, smiled, reached out for my hand and said "that's better". Most of the time Jake's dysphasia makes it almost impossible to decipher what he is trying to communicate; not this time! Moments like this make me feel that we are reaching the stage where I can actually allow myself to believe that I still have a Jake...I STILL HAVE A JAKE!!!!!!!

The paperwork is being prepared for the funding request for our next move and, having spoken to the rehab lead at one of the units we may move to, I feel ever more positive about the future and what this move could mean for Jake. I don't doubt that hope will go down again over the next months and years, but the general trend is most definitely that hope goes up.