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The lack of co-operation that was such a problem at Boot Camp has been replaced by a genuine desire to engage and succeed.  Refusal has been replaced by enthusiasm and dread has been replaced by interest.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

Goodbye Boot Camp...hello rehab hotel

Hope goes up today as we embark on a new chapter in our brain injury journey; we have our wads of NHS cash (thank you Poole PCT), the bags are packed and we’re off!  I would describe myself as excited and hopeful.  Jake seems to be half pleased and half terrified, which is completely understandable.  He has been in an acute hospital setting now for 8 months and the prospect of moving to what I have sold to him as a ‘rehab hotel’ must be daunting.

The ‘Hotel’ is Glenside Manor in Salisbury where they have designed a tailored pathway for Jake starting in Nadder Ward, a neuro-behavioural treatment and rehabilitation unit where they are equipped to work with some of Jake’s more challenging issues, rather than trying to work around them (would it be bad of me to call it Madder Ward?).  The plan then is for him to ‘step down’ to Bourne Ward, a mutli-disciplinary rehab ward that is underpinned by a Cognitive Rehabilitation Therapy (CRT) Programme.  It all sounds very complicated so allow me to distill it for you; Jake’s inner toddler is currently in charge (his parents can confirm that this is not a good thing) and, together with his processing and cognitive deficits, this means he is literally unreasonable and refuses to play the therapy game.  The psychology led approach at Glenside aims to unlock all his pre-injury ‘stuff’ that has risen to the surface and is stopping him from making the most of his rehab journey.  The universal view is that Jake has enormous potential and could achieve a reasonably good recovery and positive future if only he would stop standing in his own way!  Classic bloke.

I have already had several emotional goodbye hugs from some of the nursing team who are phenomenal and today I am taking in a homemade thank you cake which looks like my inner toddler has made it.  We should be used to these farewells by now having already had several of them, but they are always bittersweet; we are delighted to be moving on to the next stage of our journey but we are also sad to be leaving our Boot Camp friends.  The last few weeks have been frustrating and unproductive, but for the first couple of months the team undoubtedly helped Jake to make extraordinary strides forward and any frustration is eclipsed by an overwhelming sense of gratitude.

I suspect they may be a little pleased to be rid of us as Jake has decided he can walk.  He can’t, of course, which leads to some hilarious / heart stoppingly terrifying moments when he launches himself up and forward.  Apparently on Monday the nursing team were in the middle of their daily, slightly rowdy 7 o’clock handover and Jake, whose room is just by the nurses’ station, propelled himself off the bed, careered to the door (about 2 meters), slammed the door shut and sort of staggered backwards onto the bed…I’m told the male nurse looking after him used some rather choice language as he sprinted to the door to check Jake hadn’t ended up on the floor.  Poor chap!

I hope they will also miss us a little as we shall certainly miss them.  As at every stage of our journey we have experienced patience, love, support, humour and friendship.  Let’s hope our new friends at Glenside Manor ‘Hotel’ continue this trend.  I’m sure you’ll hear about it if they don’t!

Has anyone seen where I put my patience?

Morning all.

Enjoying the stunning British Summer weather? Spare a thought for my sister and her family who are camping.  I'm thinking they may be a bit damp.

A quick post to keep everyone up to date.  We are still patiently(ish) waiting to hear about the funding decision which has been delayed by the Jubilee weekend.  We should know next week and then, assuming there is a bed available at the chosen unit, we will be moving on very quickly.  Some good news; a third option has become available at a unit called Glenside which is a neurological rehab hospital in Salisbury with an excellent reputation and a specialist pathway for neuro behavioural challenges.  Perfect.  The Neuro Psychologist visited Jake yesterday and feels confident that they can help to unlock some of the behavioural challenges that are holding him back at the moment.  Glenside is also only an hour away which makes life easier in every way.  Lets hope we a) get the funding and b) Glenside is selected as the right place.

In the meantime we continue with home visits and Jake came home every day over the Jubilee weekend which was lovely and challenging in equal measure!  He is much more co-operative and open to engage at home, but he is still very damaged and soul and if patience is a virtue, I am truly a virtuous person!!

From the perspective of firsts it was a great weekend; he wheeled himself around the house properly for the first time (we really need to widen the doors!), he ate his dinner at the breakfast bar for the first time and he took himself off for a rest in our bed for the first time.  The taking himself off to bed is hilarious, because he would clearly like to spend all day there and I am refusing to let visitors go and talk to him when he is in bed as we are supposed to be encouraging him to be up and engaged more during the day.  This leads to many comical exchanges where Jake attempts to trick us into going to talk to him and I yell back that we can't hear him so he'll have to get up!

He's still being very uncooperative and aggressive with the Boot Camp team and it feels like we are all marking time until he is moved to the next stage of his journey.  Here's hoping it comes soon.

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.

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.