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The lack of co-operation that was such a problem at Boot Camp has been replaced by a genuine desire to engage and succeed.  Refusal has been replaced by enthusiasm and dread has been replaced by interest.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! 

Be grateful I kept it brief

I know that some of you find this kind of thing pretty nauseating, so I'll try to keep it brief, but I've been giving quite a lot of thought recently to gratitude.

Let me explain. Tonight I was thinking about how downright bizarre life can be. Jake has lost many things, some forever and some we hope just for now. He's lost memories, time, his radiography career, language, many cognitive abilities and the chance to buy me an enormous present last Christmas (really hoping this one is temporary). But, and it's a big but (I like big buts and I cannot lie), he has also gained in some unexpected ways; he has gained time as well as lost it as he will have time in the future to really decide what he wants from his new, different world. He has also gained from some of the other losses; he has lost the need to worry whether his shorts match his t-shirt, he no longer gets embarrassed in front of new people, he says what he feels without worrying how he'll be perceived and when he smiles or laughs it is completely pure, genuine and without agenda.

I suppose it has something to do with the natural balance of things that in wishing and hoping he will recover some of the good stuff, we are inevitably inviting back some of the other. It did make me think about being grateful though, whatever the situation.

So, here it is; today, the 6th July, I Mrs K am grateful for:

·         Jake, clearly

·         Our idiot cat (just don't tell him or he'll want more food)

·         Our beautiful home in Poole and its soothing garden

·         My in-laws who contradict all the stereotypes and are lovely

·         My Sister in Law and the friendship we have found - you rock, Hats

·         Our friends who have steadfastly supported us (especially A&F and M&D)

·         My family who have wrapped me in their love and soaked me in cider, gin, rum, wine etc…

·         My renewed friendship with my sister and all the walking, shopping, gyming and gossiping we do

·         The NHS; the Yanks are mad, it's amazing and we'd have been in deep doo doo without it

·         Social media for keeping me connected despite living in a brain injury bubble for 8 months

·         My employers and colleagues for being understanding, supportive and flexible

·         CSI; there's so much of you on I never have to listen to my thoughts if I don't want to

·         Radio 2; see above

·         My neighbours who are lovely and didn't even get to know us before they were called upon in a crisis

·         Team Korving, all of them (solicitors, case managers, police, Drs, nurses, therapists, care assistants, surgeons, porters, ward clerks, etc...)

·         Sebastian, Jake's regular taxi driver who never treats Jake as though he’s different and is patient, good natured and supportive without exception

·         My local Chinese takeaway

·         Maltesers

·         The Higgs field, because without it nothing would matter (geddit?)

There are loads more, but I can hear an old colleague (you know who you are) making pretend vomit noises all the way from Weybridge, so I'll stop.  Oh, apart from to say I am grateful that you're reading this...

…hello, is there anybody there?

Is that you Worzel?

Having really rather let me down last year, the Universe has clearly decided to cut me some slack and look after me a bit more in 2012.  This has led to my being genuinely happy for the first time in 8 months.  For those that know me well this will make sense and you will be remembering a generally giddy individual with an appalling sense of humour and a tendency to speak before thinking (self awareness, it's a beautiful thing).  It is however confusing for those that didn't meet pre-accident Charlie as it must seem like I've done a Worzel Gummidge and changed my head! (If you don't know who Worzel Gummidge is then I make no apology; it's your own fault for being sickeningly young).

Anyways up, shall I stop prevaricating and cut to the chase?  Jake is now safely ensconced in the Hotel Glenside and it is safe to say that after just 10 days the difference is tangible and unbelievably exciting. He has initially been admitted to a ward which focuses on modifying challenging behaviour and to Jake's loved ones this was a tough reality, but an understandable one; he's always been such a considerate, gentle man and seeing him communicate his frustration in such an uncontrolled way is completely alien and often distressing.  The 24 weeks funding we have been fortunate to secure is sufficient to enable Jake to remain on this secure ward long term if necessary and we were all starting to come to terms with this as a real possibility.  Apparently not!  In a meeting with Andrew the Ward Manager yesterday I was told that Jake simply doesn't need to be there; his behaviour is completely appropriate for this stage of his recovery and the challenges he is facing and they will therefore be transferring him to the general rehab pathway as soon as a bed is available. Andrew added that Jake is far too nice for them and the staff keep being thrown by his ability to reflect and apologise and he doesn't want them to get too used to this; hurrah! 

It may take several weeks for a bed to become available on the Bourne rehab ward, but the team working with him now will work with the Bourne team to ensure that they are incorporating the Cognitive Rehabilitation Therapy (CRT) approach that underpins Glenside rehab treatment. (CRT is very different to CBT and there is a good description of how it works here: http://www.societyforcognitiverehab.org/patient-family-resources/what-is-cognitive-rehab.php).

It has also been brought home to me by the Glenside team this week what a miracle Jake is.  He has always been my miracle as I never believed I would be loved by such an extraordinary person; it seems that he is also a medical miracle as the severity and location (left hemisphere) of Jake's injuries mean that he should not have achieved even a fraction of the recovery he has already made and we are still at the early stages of his rehab journey. That man rocks!

The final piece of my happiness puzzle this week has been a call that I had with the CEO of Blue Sky.  If you know me well you will know that I love that company as much now as I ever have in the 12 years I have been lucky enough to work there.  I was beginning to think that I may not be able to continue to work with them due to the level of flexibility I will need to fulfil my priority role as Team Leader of Project Jake's Joy.  Not so; CEO (which now stands for Chief Excellent Officer) called to discuss the perfect role which will enable me to stay part of the Blue Sky family, maintain the flexibility I need to support Jake and do the thing I love most; writing!  Still t's too cross and i's to dot, but I should be starting back on the 1st October. Amazing!

So all in all, hope continues to go up.  Architects are coming on the 10th to complete a survey of our home so they can make recommendations as to how Korving Towers will need to be developed to meet Jake's needs and my beautiful man will be coming home for his first overnight visit on the 14th (which also happens to be my Birthday; coincidence? I think not!), so stay tuned for more news on the direction of our hope.