Guilt, hope and revenge!

OK, so I'm just going to confess before writing anything else. Yesterday I went home and left the side of Jake's bed down. Jake is desperate to escape. Put these two things together and what do you get? Jake stranded on the floor having banged his face.

Think you've experienced guilt? You have NO idea. I spent last night wide awake waiting for the call to tell me that he'd had another bleed etc. I called the hospital at 11pm and again at 7am and he is, of course, absolutely fine.

In fact, when I hot footed it back to Boot Camp last night with my heart in mouth to see what I'd done, I asked Jake where he hurt and he pointed to his stomach...turns out he was hungry because they'd delayed his feed until they knew he was ok!

My job is fundamentally about creating lasting behavioural change through creating internalised emotional connections to the need to change by making it personal. I'm thinking I've probably internalised the need to make sure I always put the side of the bed up before I leave! No additional coaching needed here.

In other news, the environmental visit went well, particularly as I'm a sucker for a compliment and the Occupational Therapist thinks we have a 'really lovely house...it’s perfect'...preen, preen (that'll be my high significance driver - I can hear my colleagues guffawing!).

This means that Jake will be coming home for the first time on Tuesday, accompanied by the OT and his keyworker Jackie, who is a specialist nurse and a truly lovely lady. Then, assuming that goes well, over the Easter weekend I will be bringing him home on my own twice. Excited? Hopeful? Anxious? Bricking it? Oh yeah!

I say he's coming home for the first time because Jake has no memory of our new home. Nada, nowt, shag all in fact. Weird. Cue frantic decorating, cleaning and tidying; I know, I'm an idiot, I just can't help myself.

In even further news, a magistrate will be considering Jake's case on Monday. If 'that woman' pleads guilty by post it should all be resolved on Monday and we can move forward with the civil case. If she pleads not guilty then a further court date will be set that all parties and our star eye witness will be called to. On the one hand I'd quite like it all to be wrapped up on Monday, on the other I'd quite like to get the opportunity to sit in the same room as her and throw hard back copies of the Highway Code at her head and paper her car with pictures of Jake in intensive care. I know that this is not the adult thing to do and that it will attract negative energy and all that sort of gubbins, but...yada yada yada...she broke my Jake and we will make her pay mwahahahaha!!!!

So, next week is a big week, therefore next week's blog is likely to be a long one. You have been warned!

Wish me luck

It is 3:30am and I am failing miserably at the job of sleeping as my mind is a jumble of worries and the unknown, so I thought I'd better use the time to blog. There's been a bit of a word drought recently, so I apologise if you've been waiting for news.

The last couple of weeks have seen lots of visitors (which has been lovely), the slow rumbling of legal wheels beginning to turn (which I can't really go into yet, but promise to share soon), some small but real progress in Jake's rehab, a return to some of the terror of the old days and the coming home of some stark realities; basically it's been a bit like having a bottle of concentrated brain injury recovery...and forgetting to dilute it!

The terror came in the form of a really nasty infection which saw Jake go from fine to seriously ill in a matter of hours with a temperature of 39.8, a very low blood pressure and a worryingly high heart rate.  Just like the 'good 'ole days'! The Boot Camp medical team were amazing and he is fine again now. It was truly bizarre how quickly we slipped back into the same sensations and emotions repeatedly experienced in our Tooting Hilton days; like we'd been shoved in a time machine and made to re-live old horrors that time was supposed to help us forget. Oh, if only we had a time machine.

But what of Jake's progress? Never giving up, he continues to struggle with communication. He is now occasionally finding the sounds to go with his words, but this presents its own challenge as his expressive dysphasia means that often these words make no sense. I cannot imagine how frustrating this is for him; as far as he is concerned he has communicated completely clearly (which takes real effort on his part) and we still look at him with confusion as we make feeble attempts to decipher what he has said.

Physically he continues to make slow progress, but this is hampered by his dyspraxia and requires a Herculean effort and determination. He is aware that the Boot Camp team doubt whether he will walk again and, when he is present enough to understand this, is resolute in his belief that he will. Yesterday he astounded not just those of us visiting him, but also his keyworker when he not only pushed himself forward in his wheelchair, but also managed to slowly reposition himself so he was facing in the right direction to get through a door. From the look on her face this was clearly beyond what they expected him to be capable of. Good.

Yesterday was also a day for coming down to Earth with a bump. Whilst Jake has been in hospital I have been repeating to myself and anyone who will listen (or is daft enough to read this blog) that 'there is a long journey ahead'...'it is very early days'...'we don't know what Jake's outcome will be' etc. all lovely and vague.  And then yesterday I had a conversation with Jake's keyworker about the future. Not the long term, slightly indistinct and a long way away future, but the immediate, in the next couple of weeks future. Next week the Boot Camp team are coming to Korving Towers to do an 'environmental visit'. This means that they will assess our home to understand what is needed to make it possible for Jake to start coming home, initially for a couple of hours, on Saturdays and Sundays. They will also assess the possibility of installing a hospital bed and hoist so that he can come home for a full day and be able to rest in the afternoon.

Viewed from a distance these are exciting plans; viewed up close they are very real, very scary and very big.

You see I'm not ready. I thought he would be much better before we started to talk about home visits. I have become reliant on the support and capability of the wonderful nurses who are always there to help out. I'm scared I won't be able to do it. It's forcing me to look at the very real possibility that he will stay dependant which he will fight, resent and hate.

I am frightened. I want to make it all go away and be back in my home with my Jake and our plans, blissfully ignorant of our current reality.

But that can't be. So I will continue to keep on keeping on, one day at a time and trust that Jake and I were absolutely meant to be together, whatever life has planned for us. To my friends and family I continue to be eternally grateful for your time, support, patience and understanding (I'm not the best 'me' at the moment).

So this is why I am awake at 3:30am trying to quell the storm of my imagination.

John Lennon once said 'reality leaves a lot to the imagination'. Well I am going to try and deal with the reality I have in front of me right now, not look up too often and try and keep my imagination in check. Wish me luck!

Embracing denial

*WARNING there is a shockingly awful gag at the end of this blog*

So, yesterday was the review meeting with the Boot Camp team where we met with representatives of Occupational Therapy, Physiotherapy, Speech & Language Therapy, specialist Dr's and nurses and the Consultant. The purpose of this meeting was for them to share with Sister in Law and I what has happened, what they are planning and what they are aiming for in terms of goals for Jake.

Needless to say, this was not the easiest way to spend an afternoon and I am glad that Jake is not aware of some of things we discussed; it is tough enough for those of us that love him.

The headlines are that Jake is both dyspraxic, which is related to thinking and doing and dysphasic, which is related to language. What this means is that he can make automatic movements, but not planned ones (which makes rehab very challenging as he freezes when he is asked to do something). When he finds words he still makes no sound and they are often the wrong ones (expressive dysphasia) and they are concerned that he has limited understanding of what is being said to him (receptive dysphasia). His processing of information is very delayed and they are being very cautious in their assessment of what he will achieve physically. Currently he is unable to consistently swallow and so is still very much dependant on his feeding tube.

There are lots of other elements to Jake's issues, but those are the biggies. Gutted.

And then, and then...we go and sit with Jake...

Now, at this point I think it would be useful to share something from that previously referred to, fun read 'Head Injury; A Practical Guide'. Apparently there is a model to describe the 'stages of the family's emotional reaction'. Of course there is.

Stage 1; shock, panic, denial 'Please God, let him live'

Stage 2; relief, elation, denial 'He's going to be fine'
Stage 3; hope 'He's still making progress, but it's slow'
Stage 4; realization; anger, depression, mourning 'He's not going to get back to his old self'
Stage 5; acceptance; recognition 'Our lives are now very different'

The thing is I think I'm stuck at stage 3. I have definitely experienced the emotions of stages 4 and 5 and yet I keep heading back to hope.

Anyway, back to yesterday...and then we go and sit with Jake; and it's like we were talking about a different person in the review meeting. He was so alert and engaged. SIL has bought him an ipad and they had a basic, silent, but perfectly reasonable exchange about it (we're getting very good at lip reading) and then spent some time playing with it together. I'm not suggesting he picked it up and starting using it, but he was following everything SIL did and was able to scroll down the screen.

So both SIL and I came away with the view that Jake has not yet decided to invest his effort in the Boot Camp team to the degree he does with us and, with the determination he shows us every day, will continue to exceed their expectations.

Essentially I have decided to reserve judgement (which is code for 'ignore') big chunks of what they said because I don't think they've got the measure of my Jake yet...either that or I'm actually stuck at stage 2, which is fine because I hear Egyptian cruises are quite nice :o)

Uncharted waters

Without question we are in a much better place than we had dared hope to be based on the early views of the harbingers of doom and general pessimism that surrounded Jake for the first weeks and months after his accident.

Don't get me wrong, our lives are forever changed and Jake has been dealt a shitty hand, but we are no longer facing the ultimate chicken lickin scenario and there is real hope that one day Jake will come home, albeit in an unknown condition at this stage.  Jake's closest friend very recently lost someone important to him and his family to an accidental brain injury, so we count our blessings daily and send them our love.

It's funny, but where we are now is almost more scary than that truly unknown land we were in before, where there was so much wrong with Jake that you couldn't see the wood for the trees.  As we get to see more of Jake and therefore the wood, the challenges ahead come into sharper focus.  The Boot Camp team are now fairly confident that Jake has both dyspraxia and dysphasia and both these conditions, particularly the dyspraxia, will be long term and undoubtedly tough for Jake to live with. His memory is not great with big chunks of our life together missing; my teenage nephews, who have had Jake in their life for the past 5 years, visited at the weekend (along with the cat, which was hilarious) and he doesn't remember them at all.  He also doesn't remember our wedding, but I figure this could be a positive as we would need to recreate it...in New York!

We are also seeing the incredibly inspiring strength and determination that makes Jake the frankly awesome human being he is.  He has no physical strength in his legs or trunk, his body refuses to obey him (dyspraxia) and his co-ordination is decidedly hit and miss and yet, despite all this, everyday he tries to lift himself out of his wheelchair.  He whispers 'stand' constantly and grips the arms of his chair with grim determination, forcing his unwilling body forward.  Obviously he doesn't succeed, but seeing this unbound will gives me a rush of pride and hope.

The not knowing is difficult but Sister in Law and I have the first multi-disciplinary team meeting tomorrow afternoon with the full Boot Camp crew who will, for the first time, start to talk about what Jake may be able to achieve, which is exciting but terrifying as we sail these uncharted waters.  I'm sure we will fulfil our usual roles in this meeting; SIL taking responsibility for being professional, calm and asking great questions whilst I take care of the wide eyed staring in shock, the nervous cracking of inappropriate gags and occasional blubbing.  I think it's important to agree roles and responsibilities in advance, don't you?