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.

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