Friday, 20 July 2012

Home sweet home?

Amazingly Jake has been at the Rehab Hotel for 4 weeks now.  We had heard lots of stories about the incredibly positive impact that moving from an acute environment to a true rehab environment could have, but we had no idea that he would settle so well.

The lack of co-operation that was such a problem at Boot Camp has been replaced by a genuine desire to engage and succeed.  Refusal has been replaced by enthusiasm and dread has been replaced by interest.  This means that every day he happily engages in therapy including physio that ranges from standing, cycling on a static bike and even short periods of walking between the parallel bars!  It also means that Jake is expected to achieve full continence; a triumph for him which is so huge it is impossible to describe.

So, how the hell have the achieved this in just 4 weeks?  Well, they would say that they have done very little and we are still at the start of Jake’s rehab journey.  Piffle is what I say.  The difference in approach is tangible and obvious.  Jake is no longer treated as a problem patient, but rather a highly intelligent, valuable human being who finds himself in a crappy situation.  He is shown endless respect and admiration for his determination and survival instinct and his occasional outbursts are seen as completely appropriate and understandable for his situation.  The environment is as non-hospital as they can make it and the atmosphere, even on the behavioural ward he is currently on, is supportive, sociable and relaxed.  As soon as a bed is available he is being moved off the behavioural pathway and on to the main stream rehab pathway, but we’re in no rush; he’s so happy where he is.

For the first 3 weeks Jake stayed at the Rehab Hotel rather than coming home and it was a couple of weeks before I realised he had stopped begging to go home every day as he had at Boot Camp.  Last weekend Jake came home and stayed overnight for the first time.  In a happy coincidence it was also my Birthday and going to sleep in my husband’s arms for the first time in nearly 9 months is most definitely the best Birthday present I have ever had. 

The visit was not without challenge, but overall it was utterly wonderful; Jake said this best when he sat in his armchair, uttered a long sigh and said ‘oh, thank God for that’.

The main challenge Jake now faces is around the deficits that are coming to the fore as his brain tries to repair itself.  The front runners are cognitive, mainly; his severe language difficulties (in both understanding words and finding the right ones himself), the confusion and fear associated with what he must face and, most significantly, the huge challenge Jake has with attention and overstimulation.  For example; if you ask him very simply if he wants a coffee he can understand and respond in context, but if you ask him if he wants a coffee OR a blackcurrant juice he is overwhelmed and cannot process the choice.  The attention and language deficits together also mean that Jake is very quickly overwhelmed by anything but the most undemanding conversations. This means that all communication must be kept simple and low level and also that visits from friends and family need to be managed very carefully as he becomes agitated very quickly when overloaded.  Thankfully everyone was very understanding when I had to turf out our friends A&F and turn away my sister and her husband on Saturday because Jake had had too much and needed to rest.

We were not alone though; Jake’s lovely Case Manager managed to secure funding for domiciliary care support and we now have a brilliant new member of Team Korving.  Lilia the lovely Lithuanian (try saying that after a couple of martinis!) is one of those people who are born with an excess of empathy.  She has a naturally caring soul and connected with Jake straight away.  She will be with us each Saturday night from 7pm to 10am and will enable me to be Jake’s wife, not his carer.  I will try not to worry about the fact that she’s tall, blonde, leggy and extremely pretty!!

The real revelation from the home visit was that Jake willingly went back to the Rehab Hotel without drama; there was no need for the lengthy negotiation and cajoling required in getting him to go back to Boot Camp!  It seems that the concept of home is about where you feel happy and safe and not an address.

Which is lucky really, as last week also saw the long heralded visit from the specialist architect who was coming to assess our home against Jake’s current and future needs.  The first surprise was that there were two of them; one from our side and one from the other party’s insurers.  What happened then can only be described as a physical representation of the LIBOR emails.  Gary and Tom did a brilliant job of playing at locking horns and would each wait until the other had left the room and then say “of course, what Gary / Tom won’t tell you is…”.  They then ruined the illusion by arranging to get together to play golf soon, in my kitchen, in front of me.  All very distasteful and, I’m reliably informed, par for the course in cases of this kind.  Apparently this will be a regular experience once liability is agreed with all sorts of paired off experts coming to see us to peacock around each other!

The slightly gutting outcome of this hilarious visit was that Tom and Gary are in complete agreement that Korving Towers is too small and we will need to move to a much larger property before Jake comes home for good.  This will be funded through the compensation settlement and you may think that this is a good, even exciting opportunity.  But I am devastated.  Jake and I chose this house together; it was supposed to be our ‘forever home’ and we love everything about it.  They’re right though; during this weekend’s home visit it quickly became clear that KT is not designed for wheelchair use.

I keep reminding myself that change is usually a good thing and we will get over losing Korving Towers when we start looking for Korving Mansions! 

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