Monday, 25 February 2013

Bossy, know it all control freaks

The unvarnished truth is that I am a control freak; I like to be in charge, deciding what will happen next and what everyone should be doing.  So, not just a control freak but also a bossy know it all.  Ha! 

This is bobbins if your husband has a severe brain injury and huge swathes of your life and future are in other people's hands.  You are in control of nothing, know nothing and no one would do what you told them even if you did.

Lying in bed last night feeling completely out of control and worrying about so many different things it would take too long to blog about, I was overwhelmed by the thought of the strain that is currently being placed on our relationship since I broke Jake out of the Student (Doss) House and into the now too small Korving Towers.  We seem to be able to wind each other up in a moment and spend much of our time apologising to, circling or avoiding each other.  As I lay there trying to take back control of this problem with imagined strategies and plans I suddenly realised that this is what I have been trying to do and where I have been going wrong, I have been trying to manage him. 

Jake is, always has been and always will be a bossy, know it all control freak.  Whoever said that opposites attract got it sensationally wrong when it came to me and Jake.  We are freakishly alike (I like to think I look better in heels) and my trying to manage him is stupid, arrogant, NOT my role (there is an army of professionals to support him in his rehab) and will destroy what is a wonderful marriage that I am very proud of.

So, just to recap, at a crucial time when he is trying to take back control of his life, rediscover who he is now and create some form of meaning out of all this, his ignorant wife is being a bossy, know it all control freak (BKIACF).  Who knew I was such a spectacular idiot?

I should know better of course. I work for a very cool company who are like behavioural alchemists; they can transform organisations with entrenched and negative under performing people, cultures and behaviours into positive, performance focused, collectives who make, do and deliver great things in the right way. I'm supposed to know this stuff (I've worked there for 13 years!) and as I lay there trying not to be engulfed by the terrifying enormity of this thing masquerading as my life, I suddenly thought of Dan Pink.  "Dan who?" I hear you ask.  Well, I shall tell you.

Dan Pink is a bit of a genius when it comes to behaviour and he has a very cool theory (supported by lots of research) about motivation. He states that "the secret to high performance and satisfaction at work, at school, and at home is the deeply human need to direct our own lives, to learn and create new things, and to do better by ourselves and our world". This can be distilled into three core elements that drive individual motivation; Purpose, Autonomy and Mastery.

This may all sound a bit fluffy, but I happen to know that it works because I have seen it successfully applied in the work that we do.  If you still need convincing, have a look at the amazing animation that Dan did for RSA which explains not just the theory, but clearly articulates the application, relevance and (for all us left brainers out there) the evidence: Drive - the suprising truth about what motivates us.

OK, OK, I hear you...I'll get to the point; if purpose, autonomy and mastery is what drives our motivation to succeed, then how much of this does Jake have at the moment?

Purpose (the reason we do what we do - provides the context for autonomy and mastery): as I am told is often the way following long term inpatient treatment, Jake has become institutionalised and directionless.  Prior to the accident Jake had purpose coming out of his ears; I think it is fair to say that he is a bit lost at the moment and needs to rediscover what his purpose is in this new world he has been forced to inhabit.

Autonomy (control to be self engaging, interested and managing):  he has someone with him all the time and we're all making decisions and plans on his behalf.  I'm so ashamed of this; I always said we should be going on this rehab journey WITH Jake, not doing it TO him.  He has no autonomy or control...and did I mention that he is naturally a BKIACF? 

Mastery (the desire to get better at something that matters, to continually improve): for me this is where there is a HUGE opportunity.  Jake is a complete and utter perfectionist (and a BKIACF).  He hates doing something that he doesn't buy into or think he can succeed at.  If we can tap into this and break success down to be achievable and meaningful then the concept of mastery could be the key to his taking back control.

The challenge now, of course, is to create an environment, in the unique context of traumatic brain injury, where Jake can safely have purpose, autonomy and mastery without me over-engineering or managing it. 

Which won't be easy, I'm a BKIACF you know!

Tuesday, 19 February 2013

Room service?

Clearly I don't want to speak too soon, but we're a week in and things seem to be going surprisingly well.  We are both sleeping better and I have been surprised by how easily we have both adjusted.

We now have a care team of four excellent PA's and by the end of next week the physio, speech & language and occupational therapists should all be in place.  Tomorrow Jake goes to his first Headway social meeting (in a pub on Poole Quay, alright for some!) and they have referred him the to pretty much every rehab group available.

He seems more relaxed and confident now than in a very long time and I'm starting to feel like maybe, just maybe I've made the right decision!

This weekend we travelled up to stay with friends in SW London and spent a very happy few hours in a pub we used to frequent, followed by lunch in his favourite Indian restaurant the next day; it's fair to say a good time was had by all.  It really didn't seem to matter that he didn't understand much of what they were saying and vice versa, it all just seemed to click, though I suspect the beer helped.  It made my heart soar to see him having such a great time and doing something so 'normal', whatever that means.

We did, of course overdo it and he spent much of yesterday a victim to his fatigue either asleep or staggering about in a sort of trance, but I know he would agree it was so worth it! 

The only downside to Jake coming home so far is that, having been in hospitals and rehab units for 16 months, he is well and truly institutionalised; this means he expects to be waited on hand and foot like he's in hotel...he is finding the reality a bit of a culture shock!

Tuesday, 12 February 2013

On the naughty step

I think it is fair to say that I am not that popular in all quarters at the moment.

Having made the decision to give notice to the student house, events came to a head on Monday morning and I brought things forward a Monday morning!

Essentially I decided not to take Jake back after the weekend, or ever. They say some decisions make themselves, and this certainly feels like one of those times.

Jake's confidence and morale have taken such a hit since Christmas and, together with the overall regression of hard worn improvements since he moved to the student house, I realised that it was crazy to send him back to somewhere that he didn't want to be, that wasn't helping him and that was causing us both so much distress. 

Not a universally welcomed decision, but what else could I do?

Of course, this presents all sorts of complications and I get the impression it’s a decision that is not usually made at such short notice, but there you go (there was a bit of a hairy moment where the possibility of Jake being made to go back was mooted, but fortunately this threat seems to have abated).

We're both 'on holiday' this week (big thank you to my colleagues for their support) and from next week we will need to quickly put in place a care and therapy team, together with a joined up plan so that Jake can get back to rehabilitating and I can get back to working and not being in the way!

Korving Towers is not really big enough for this change, but plans are afoot for a move to a larger property and it will be worth being a bit cramped in the short term to know that Jake is getting the level of support that he needs and deserves. I know I will definitely feel and sleep better having him home.

I joke about being on the naughty step, but it is important to stress that this decision has been made completely out of love for my Jake and the genuine desire to do the right thing for us both for the future. On the surface it may seem like a selfish decision, so I do hope everyone understands.

Wednesday, 6 February 2013

What a waste

Oh, where to begin?
I suppose we begin with the opportunity; Jake is currently benefiting from a window where his brain is still receptive to making new pathways, he is very motivated to continue to improve and we have an excellent funding package through the NHS named patient programme.  So the opportunity is most definitely for hope to go up; it is huge.
Currently that opportunity is in the hands of a transitional rehab unit that you will have heard me refer to as the student house.  So, what's the problem? The problem is that they are not maximising that opportunity.
The purpose of Jake moving from the rehab hotel to the student house was that it is closer to home and the rehab package would be specifically designed to focus on integration back into our local community and making the successful return home in the Summer.  He would gain the life skills to have some Independence in our home and the confidence and familiarity to access local amenities.  This was very exciting to us all and felt like a real step forward.  Progress.
So why are they not maximising this opportunity? Honestly?  I don't think they have the capability or the resources.  Seven weeks in and the life skills gained at the rehab hotel have gone and no progress has been made in accessing the local community.  Don't get me wrong; the staff are warm, caring and supportive, there are lots of internal group activities that they have managed to get Jake to join and enjoy and he has a lovely big room. If we had reached a point where Jake had plateaued and been assessed as needing long term residential care, then the student house would be perfect.  We have not reached that point and what makes it so much worse is the lack of accountability being taken for this failure to deliver against the promises made; never have I experienced such a practised and skillful avoidance strategy!  It's like accountability is something toxic and they don't want to get any on them.
This is maddening as I cannot express enough how utterly lucky we are to have this perfect storm of opportunity that so many don't.  I will not see it wasted, you can be sure of that.
Yesterday I had the chance to 'express' my feelings face to face (not a terribly 'clean' communication!) to those funding this opportunity.  I felt like I had been truly heard for the first time and in the review meeting with the student house team that followed a very clear plan was drawn up for the next 4 weeks of rehab.  I'm afraid my confidence is not particularly high.
So, I suppose that means we end with a question; if the opportunity is currently being  wasted and the student house team can't get their act together, what should we do next?  The answers are complex and pretty daunting and, with the excellent support of Jake's case manager and the Poole NHS brain injury support team I am sure we will find them.