Jake and I have just returned from a weekend of luxury and relaxation at a local spa hotel. It was fabulously indulgent, the staff were incredible and I can honestly say that a change of environment and a removal of stress has left us both feeling more relaxed than in a very, very long time. So much so that we've booked to go again in June!
We arrived home this morning to the icing on the cake; a message to say that our offer has been accepted on a new house.
The current Korving Towers was the perfect forever home when we moved here in August 2011; it is small but perfectly formed and had everything we needed; a big bedroom, office, two reception rooms, a lovely new kitchen, sunny south-west facing garden, a massive garage for the imp of doom, really close to my sister and her family in a good area on a quiet road and close to local amenities (and a nice pub!). If things had gone to plan I can honestly say we would have stayed here until they carried us off.
Sadly things haven't gone to plan and since Jake came home it has become increasingly obvious that the current KT is just too small. I am finding this particularly difficult as I literally have nowhere to go; I work from home and so for most of the day you can find me, Jake and a carer bumping into each other. Add to that the various therapists and related visitors and the house suddenly feels very small indeed. Jake's supported and carefully managed morning routine means that access to our bedroom and one bathroom is restricted until at least 10:00am and his need to rest regularly means that sometimes I have little or no choice as to where I go in my own home.
In fact I often find myself still in my PJ's at 10:30am with the door to our room closed as Jake has gone back to sleep!
The journey to finding a new property has been tricky as we have needed to balance getting a property that reflects our original needs, the new needs our situation adds and a budget that both sides can accept. The new Korving Towers feels perfect; with much more space, in an area we are happy to live in and still within a reasonable distance from my sister (and therefore the wine!).
There was a near miss that was judged as 'over provision' by the other side (easy for them to say, it's not going to be their home!), which has led to us being in the crappy position of having to go to court for the interim payment we'll need to purchase a new property. All I can do is trust that our legal team will manage this side of things for us and hopefully we'll be in the new Korving Towers before the end of the Summer.
Monday, 25 March 2013
Sunday, 17 March 2013
Grief
I don’t know why, but after 555 days suddenly I can’t breathe. I feel smothered by anger, sadness, confusion, responsibility and fatigue.
But it hurts, in a way I can’t even begin to explain. I am burning at the centre of my soul and I want to close my eyes and sleep forever so I don’t have to feel it anymore.
All I can think about is what is lost; all the experiences
we were going to share, the pride I know I would have felt watching him be an endlessly
amazing father and radiographer, the chance to be a mother, my career, my
social life, my future.
I spend all my time trying not to show Jake how broken I
feel, crying when he’s not there and closing myself off pretending to be
strong, positive and cheerful when he is.
He’s got a brain injury, but he’s not stupid; he knows.
I’m sitting here now on the sofa in the lounge with hot
tears splashing on my laptop, trying to bring myself back under control before
I climb into bed with my Jake.
I know this is grief, I know this is normal and necessary, I
know it will pass.But it hurts, in a way I can’t even begin to explain. I am burning at the centre of my soul and I want to close my eyes and sleep forever so I don’t have to feel it anymore.
But then my beautiful man would be all alone and that would be so much
worse.
So tomorrow is day 556 and I will get up and start again. Because I know this is grief and I know it
will pass.Thursday, 7 March 2013
Remember this
Our wedding in New York
Our honeymoon in California
Our beautiful new home
Our roles
Our rules
Our plans
Our secrets
Your degree
Your second career
Your colleagues
Your words
Your age
Your triumphs, trials, decisions and set-backs
My flaws
My quirks
My fears
My dreams
...my name
These memories may be lost to you my love, but they are just moments in time and I promise you we will make more.
So, if you remember nothing else remember this; my name doesn't matter because I will love you every day, forever; you are truly amazing and we have literally millions of new moments ahead together with which to make new, wonderful memories.
Lets start today.
Monday, 4 March 2013
A plea to the professionals
I don't want this post to be misunderstood, so I'd like to start by stating my intent; I genuinely believe that anyone who chooses to work in a field where there are such extraordinary personal and emotional stakes does so because they are fundamentally good people who want to do the right thing. The majority of our journey has been characterised by the provision of exceptional care, empathy, thoughtfulness and professionalism by these people...some of it has not.
The sad thing is that it is the little things that are overlooked, not considered or ignored that often have the most devastating impact and, I suspect, often without the offender being aware of this impact. That is what this post is about and it is intended as a positive call to action. So please read it in that context.
Cutting to the chase, YOUR PROCESS IS RUINING MY LIFE!
Jake and I are just two people, we're not particularly exceptional for anything apart from what happened at 7:25am on the 26th October 2011. We don't have access to limitless resources or medical knowledge; we're just doing what we can in a truly shitty situation.
Thankfully we are optimists and so are both attempting to make the best of it. This is difficult to sustain though when each corner we turn seems to lead us to a big, ugly and unresponsive process.
When your world has shifted so fundamentally that you are having to re imagine every plan, expectation and dream, the thoughtless proclamations of 'that's the process', 'it's not our policy', 'we have to wait for A to talk to B, who needs to check with C who is on holiday for the next 2 weeks', 'that's not in the guidance' or (a personal favourite), 'that's not my job' are breathtakingly stupid and unhelpful.
Before you go all indignant and defensive on me, I know that these are the facts of your job and probably true in that context, but do you really have to say it that way? Could you choose to look around the process and see the broken person behind it? Could you take the time to really listen and then explain why the process is there, how it will benefit me and what you are going to do to make my experience of the process a bit less painful?
Take a moment to consider where the process came from, who did 'they' have in mind when they designed it? I'm guessing it was originally meant to help people like us, not defeat us. If not, why not?
So, a simple plea; next time you're about to take out your process and brandish in the face of someone who is potentially crumbling under the pressure and terror of their situation, please think about why you do what you do, the way you are about to communicate and the impact you're about to have.
Thank you from me and my Jake for reading; we'll keep trying if you will.
The sad thing is that it is the little things that are overlooked, not considered or ignored that often have the most devastating impact and, I suspect, often without the offender being aware of this impact. That is what this post is about and it is intended as a positive call to action. So please read it in that context.
Cutting to the chase, YOUR PROCESS IS RUINING MY LIFE!
Jake and I are just two people, we're not particularly exceptional for anything apart from what happened at 7:25am on the 26th October 2011. We don't have access to limitless resources or medical knowledge; we're just doing what we can in a truly shitty situation.
Thankfully we are optimists and so are both attempting to make the best of it. This is difficult to sustain though when each corner we turn seems to lead us to a big, ugly and unresponsive process.
When your world has shifted so fundamentally that you are having to re imagine every plan, expectation and dream, the thoughtless proclamations of 'that's the process', 'it's not our policy', 'we have to wait for A to talk to B, who needs to check with C who is on holiday for the next 2 weeks', 'that's not in the guidance' or (a personal favourite), 'that's not my job' are breathtakingly stupid and unhelpful.
Before you go all indignant and defensive on me, I know that these are the facts of your job and probably true in that context, but do you really have to say it that way? Could you choose to look around the process and see the broken person behind it? Could you take the time to really listen and then explain why the process is there, how it will benefit me and what you are going to do to make my experience of the process a bit less painful?
Take a moment to consider where the process came from, who did 'they' have in mind when they designed it? I'm guessing it was originally meant to help people like us, not defeat us. If not, why not?
So, a simple plea; next time you're about to take out your process and brandish in the face of someone who is potentially crumbling under the pressure and terror of their situation, please think about why you do what you do, the way you are about to communicate and the impact you're about to have.
Thank you from me and my Jake for reading; we'll keep trying if you will.
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!
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!
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 bit...to 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.
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 bit...to 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.
Subscribe to:
Posts (Atom)