This week has seen me rip the bumper off my beautiful car (which means I can't get to see Jake), the toilet become comprehensively blocked (ewww) and my special 'Christmas Cold' gift arrive. Frankly I am not feeling all that seasonal, despite having adorned Korving Towers with an embarrassment of sparkly, tacky Christmas tat.
In a vain attempt to look on the bright side I can report that the new bumper will mean I lose the only scrape I had on the car, I know a very cunning way of unblocking toilets without having to call someone out and getting the cold out of the way now means I won't be infecting various family members over Christmas. Oh, and it's given Jake a chance to be supportive which he excels at and which will make him feel good.
Nope, still feel grumpy!
In other news, work on Korving Towers is moving at pace and the plan is to have the majority of the work done before Christmas. The builders are working incredibly hard and are cheerful, charming and polite, although I imagine the endless supply of tea and biscuits helps. They are all sporting Santa hats this morning, so I shall get them some mince pies as well!
Jake is all ready for his move to the student house on Thursday (thankfully we were always going to use my sister's car for that!). We made a cake together at the weekend to say thank you to the team at the rehab hotel and it took me an hour to clean up the kitchen afterwards; he couldn't quite get that you need to keep the electric whisks IN the mixture, otherwise you pebble dash everything in cake mix! I think it turned out OK though:
The main bit of news I suppose is that I have made a decision about the future. At the last review meeting it was suggested that Jake could be in residential rehab for up to another 12 months. You may think this is really selfish, but I have asked his team to work on the basis that it will be 6 months. Jake and I have only been married 3 years and we have spent a year of it living apart since his accident. He will still be able to access rehab and therapies during the day, but we both desperately want to be back together and so we are working towards him being back at Korving Towers by the Summer; 20 months after his accident.
Life isn't the same without him and I'm sure my seasonal spirit will return on Christmas Eve when he comes home for four days.
I hope you all have a wonderful Christmas and remember to cherish this time with those you love; you never know what is around the corner.
As we have travelled along this strange brain injury journey, which has swung from a hurtle to a crawl and back again, I have learnt that you need to be really, really adaptable. The problem with this is that I, frankly, am not.
I like structure and predictability; processes make me shiver in anticipation and I get no greater pleasure than from creating a task list or spreadsheet; I plan and prepare for everything in minute detail. For example, I have bought and wrapped my Christmas presents, the decorations are up, the cards are written and sent and the Tesco's delivery is booked for the 22nd. I have even planned this blog (I know, hard to believe).
Life in brain injury land doesn't work like that. Life in brain injury land is like trying to quickly navigate the length of Oxford Street, blindfolded on Christmas Eve and tied to a Japanese tourist who wants to go in Selfridges...again. You can't plan it or predict how it will work out. Anything could happen, none of the other shoppers are interested in helping you get there and you'd better hope you don't get trampled on or trapped in the middle of Oxford Circus.
So, on I go, bouncing off the shoppers, lampposts and beggars half heartedly dressed as Father Christmas, hoping for the best and keeping my fingers crossed that we reach Marble Arch in one piece.
The latest problem I am wrestling with on this bonkers, unpredictable journey is how well Jake is doing. Ha ha ha - I bet you read that twice!
Yes, I did say Jake's progress is a proving to be a problem for me. I have got so used to Jake needing help. Until recently he's needed help to; stand, walk, sit, eat, choose, talk, read, write, understand, cope, remember, open and close things, lift and lower things, tidy up, go to bed, get up, get dressed, shower, shave etc. etc. etc. He still needs support with most of these things, but it is more guidance and prompting than actual help and it seems to have happened when I wasn't looking!
This means I keep getting it wrong, very very very wrong. In fact, I keep falling into the patronise trap. I don't mean to, in fact I 'mean well'...which is rubbish really. What makes it worse is that I get seriously aggravated when someone else does this to him, particularly those who should know better; Dr's, therapists, nurses....and, err, well, me.
Jake is understandably irritated by this and it causes untold angst. The man is a saint most of the time, but even the most understanding and forgiving soul gets pissed off if you repeatedly patronise them.
So, this is my pledge; I will haul myself out of the patronise trap and will try to remember the extraordinarily intelligent, resilient and determined man who CAN do things for himself, rather than the brain injury deficits and frustrations (not just his!) that trip me up and lead to me fussing and mothering.
If you see or hear me doing this you have permission to kick me in the shins.
I am about to be really honest...really, really honest. Sadly, it's probably just going to sound like a moan but this blog is about sharing the reality of our journey. So here it is.
In the last 403 days I feel like I have become a non person. Every part of my life is about someone else. Every decision made is based on what is best for that person. I am looked at with suspicion, pity and irritation by health care professionals who seem to think that I should know what I'm doing. I don't.
I get up on a Sunday morning, make a cup of tea and shuffle in my PJ's in to the lounge to watch the Andrew Marr show to find that a Health Care Assistant has put Top Gear on...again. Oh, and they're sat in my spot on the sofa.
I make plans for Christmas dinner with my family which then get debated based on whether Jake will cope by people who will all have lovely, peaceful and private time at their house...HELLO, IT'S MY CHRISTMAS TOO!
I am expected to be able to plan every conversation in advance, anticipating topics and having images available. News flash - this is not possible. I am expected to be able to attend any meeting at the drop of a hat and to understand all the medical jargon and options and make sensible decisions.
I can't go where I want for lunch, decide it's a beautiful day for a walk at the beach, sit quietly on my own in a room, pop into Tesco's for some milk or have a lie in.
Recently a Consultant even tried to say it was my fault that Jake's medication hadn't been reviewed. Seriously, how much are they paying you?!
I have to be a wife, an advocate, a financial manager, a mediator, a housekeeper, a proposal manager (yes, I still have a job). This means I am failing as a friend, sister, daughter, auntie, daughter in law, colleague.
At this point I would like to say that I love my husband more than anyone or anything else in the world. I couldn't imagine my life without him and not putting him first is absolutely a non choice for me. That's the easy bit.
I am only human though and, although it probably sounds childish and selfish, I am finding always coming second, whilst being expected to be a constant and devoted advocate and champion, a little difficult.
My switch is always 'on'. I'm a bit worried that the fuse may blow.
Yesterday was the quarterly review meeting at the rehab hotel to reflect on the past three months of Jake's rehab and look forward to the next stage of the journey.
It was a full house with all interested parties represented and I really should have anticipated what happened next; I was well and truly 'managed' in this meeting so all of you well meaning folk who have been saying "you must look after yourself if you're going to be there for Jake....yada, yada, yada...blah, blah" will be pleased to hear that I am being bullied into doing so. That's me told.
As far as news from the meeting goes, in the context of the overall rubbishness of what has happened to my beautiful man, the news is all good. In the words of the ward manager (who is amazing, but is only 26 - I'm so old!) "he's really flying at the moment".
This progress brings bitter sweet news; because he is responding so well to the rehab environment the current forecast is that he'll be in a residential rehab programme for another 6-12 months. Oh...goody (not).
Alright smarty pants, you can stop shaking your head, I know. The logical part of me does see that this is amazing news and I'm sure somewhere inside me this logical side is whooping in celebration. At the moment though it is being drowned out by the part of me that wants my husband home so we can be together again the way we are meant to be. Why are the right decisions such terribly hard ones?
So, we move forward and it's all change again. On the 20th December Jake will be moving to a transitional unit that is based less than 8 miles away and smack bang in the middle of a busy town. The unit itself is more like a shared house than the current place, which we call the Rehab Hotel, but feels more like a halls of residence. The new place will henceforth be known as the student house, which I am told is what it used to be before the neuro centre bought it. They describe it as 'supported shared living', but I prefer student house!
The focus for this move will be on transferring what Jake has learnt so far into real life in our local community and this will hopefully be the last stop before home on Jake's journey; I can't tell you how much we would both love to fast forward to that point.
In other news, my amazing husband sent me flowers and chocolates today with a note which read "To my wife Charlie, I know this is hard but I love you very much. From Jake". According to Sister in Law, who helped him to order them, these are his own words. Could I be any luckier?
In even more news, two members of the Imp Club came at the weekend and spent hours and hours of their own time welding and grinding to finish the Imp of Doom's body work and all it cost me was lunch! Lovely people, extraordinary generosity.
Firstly, I apologise for any typos in this blog; I have scratched my cornea and so have one working eye and one swollen, gummed up eye. It's quite a look!
Today's blog, with or without typos, is about words...and frustration...and patience...and forgiveness...and laughter...and love.
When someone suffers a severe brain injury it is easy for those looking in from the outside to assume that it mainly affects the owner of the injured brain. My experience though is that when your partner suffers a brain injury, it affects every single aspect of your partnership; it changes the shape and nature of that relationship and you'd better hope it's a strong one or it won't survive.
I am lucky that I found my perfect match in Jake, so I know it will survive, but the way our relationship has shifted is extreme and presents endless challenge. It is not 'his injury' it is 'our injury' and that is the shape of our relationship now.
"Every brain injury is different"; this is something we hear every day and I know there are tens of millions of people across the globe dealing with uniquely and unimaginably changed relationships and lives due to brain injury. The biggest challenge we continue to face is communication.
It doesn't matter that it is Jake's communication that has changed; communication is a two way process (if it's done right) and without understanding there is no communication.
Jake is suffering from aphasia in both his expression and understanding, which in practice means that he doesn't understand what I'm saying and I don't understand what he's saying. This is worsened by his lack of insight and how tired or overstimulated he is, but you often don't know that this fatigue has become a problem until it is too late. Add to that the fact that we both absolutely believe we are clearly communicating but can't make ourselves understood and really, does it make any difference whose head is injured?
The outcome for both of us is frustration, resentment, confusion and, more often than not, hurt. Oh, and guilt; Jake feels guilt because on some level he knows that he has changed and believes it is 'his fault'. I feel guilt because it is my job to take care of him and help him in his recovery, not snap at him because he has repeated the same nonsensical message for 2 hours without a break. You cannot imagine how stressful this is for both of us; we never used to shout at each other before our injury and I hate that we do it now.
What I can tell you is that when these moments of frustration erupt we always make peace. This is what what makes us the perfect match and why I know that whatever it's shape, our partnership will survive. We have kept hold of our patience, forgiveness and love...and we always end up laughing, even if it's slightly hysterical!
With or without our injury I wouldn't swap this relationship for any other.
Greetings my hopeful friends. I trust you are having a good week?
Frankly there are a lots of brain injury related things I could have a moan about that have happened in our world this week, but instead I choose to share with you that a little bit more of the fabulous and rather unique brand of lunacy that characterises my husband continues to show itself each day. As I write this it occurs to me that if you have only known Jake or our story since the accident, then you won't know what I mean by that.
To be honest, that makes me a bit sad, as you have missed out on knowing a truly awesome man (so far) and so this blog is all about Jake and what makes him the extraordinary person I love most in the world, with or without a brain injury.
Like so many couples these days, Jake and I met through an online dating site (match.com since you ask). What attracted me to him initially, apart from the foxy photo obviously, was his honesty, intelligence and ability to make fun of himself. He did try for a while to claim that I contacted him first, but I have proof this is not the case. He also exaggerated his height a little on his profile, but don't tell him I told you.
When we spoke on the phone for the first time it was for 2 hours and I laughed for the full 120 minutes for he is a spectacularly silly bugger; a critical attribute for any prospective partner in my humble opinion.
As I got to know Jake more deeply I got to know the sensitive, sometimes vulnerable soul that he hides beneath the humour and the 'proper bloke' persona he projects. Like most men he can occasionally be stupendously thoughtless (sorry chaps, but there it is), but never when it really mattered and I have always known I could count on him to do the right thing; I have always known how important I am to him.
Taking as read his incredible determination, drive and bounce-back-ability that I have written about many times in this blog before, the other significant aspect of Jake's character is that he is a rescuer; an old fashioned, generous, good in a crisis, knight in shining armour and hero.
This is so fundamental to who Jake is it can be seen in every aspect of his pre-TBI life; nobody in Jake's life ever had to get someone in to fix their computer/car/bike; if you had an emergency or a crisis he would drop everything to be there (I have so many examples of this I could share!); he would spend hours doing unrequested online research for someone if they mentioned they were unsure about an important purchase; and he would (and often did) spend his last few pounds treating someone, even if it meant having no money for his lunch the next day. This characteristic can also been seen in the complete career change he made in his 30's (did I mention how brave he is?) going back to school to get a degree and become a radiographer where helping people was the thing he loved most about the role. Oh, and if you know of any old, irritable, ugly and violent cats that need a new home, please don't tell Jake about them, otherwise we'll be adopting again!
How terribly hard it must be for him to be the one that needs rescuing now.
So, this is part one; my perspective. If you are reading this and you knew my Jake before his accident, please share your perspective in the comments box below or send me a (brief!) email and I promise to share this in the next blog.
If you don't know Jake personally yet, I look forward to one day introducing him to you in person. I know you'll love him.
You won't be all that
surprised to hear that one of the main things that drew Jake and I together was
our shared values; I suppose the best description would be that we are both
sort of old fashioned liberals.
Fairness, doing the right
thing, thoughtfulness, modesty and mutual respect set the tone for our
relationship and, having gone through a fairly unhealthy, self-destructive
period in my twenties, finding an old fashioned gentleman like Jake was like
steering my ship through a raging storm into a safe harbour.
We would often visit other
people in their homes and I would find myself thinking 'thank God Jake's not
like that' as partners belched their way through a meal, left the bathroom door
open when they were relieving themselves or were openly rude or dismissive to
their partner. I'm sure some of you are reading this and thinking 'what an old
woman, I have no problem with that', but my Dad and Step Dad are both old fashioned
gentleman, so it's not that surprising that I would look for this in a partner.
I realise now that I drew our
relationship and Jake's respectful, unconditional love around me like a
comforting armour that would keep me safe and all those who would intrude or
harm me (including myself) at bay.
You can imagine then how
challenging I am finding facing alone the completely intrusive, exposing nature
of our current situation. In the last week I have had to discuss specifics of
our sex life with four different people. Don't get me wrong, I'm not a prude, I
just don't feel all that comfortable sharing the intimate mechanics and detail
of this most private element of our marriage.
However, this is not the only
area of intrusion and exposure; our finances, aspirations, plans for a family,
where we will live, how I will work, when we're 'allowed' to be together, how
my husband's treatment and rehab is managed, where we can go on our own and
pretty much anything else you can think of are all open for scrutiny and
comment from, it seems, all and any party that claims or expresses an interest.
This feeling of exposure and
being out of control is compounded by the continuing uncertainty of both the
criminal and civil cases, where faceless people are making life changing
decisions without having even met us.
Ronald Reagan once said
"the most terrifying words in the English language are: I'm from the
government and I'm here to help".
Well, I know that all these
parties, whether official or personal in their connection, have a good intent,
genuinely want to help and also that in many cases we need and have sought out
that help; but sometimes I feel so exposed and raw that it seems as though
nowhere and nothing is private anymore and I can't navigate back to that safe
harbour because he is facing his own storm.
At those times I would like
them all to bugger off and mind their own business, or at least give a little
more thought to their impact!
On Thursday the architects came back to draw up final plans for adaptations to Korving Towers and the spec has now been sent out to potential contractors for quotes. It will soon be time for the house to be covered in dust and the cats to hide in the bottom of the wardrobe again.
Also on Thursday the independent Case Manager and the NHS case manager both came to the house to stage an intervention; but more on that later.
On Friday Jake came home in my car for the first time, having only ever travelled that distance in the back of a taxi before. Mum came to help in case she was needed and she sat in the back behind Jake; I hadn't thought this through all that well as Jake's wheelchair is massive and our four seater cabriolet is not, which meant Mum was pinned in by the frame in a manner that was probably not all that safe! It went really well though and the journey back (minus a squashed parent) was very peaceful.
Friday was also the one year anniversary of Jake's accident. It may sound strange but I chose not to view this as a sad day, but rather a day worth celebrating; the day that Jake survived against all the odds. I'd much rather focus on the next 12 months.
On Saturday a consultant neurologist with a special interest in brain injury and neurological rehabilitation came to see us and he spent 3 hours going over the case history and assessing Jake for our civil case. He was really lovely and spent a lot of time looking at the detail to make sure he had the full picture. He also spent a lot of time listening to me and sharing his thoughts on how Jake's rehab may progress. They say that every rule needs an exception; well he appears to be the exceptional consultant that proves the rule that you have to have the bits of your brain that deal with empathy and humility removed when you become a consultant.
On Sunday Richard and Karen from the Imp Club came to meet Jake and look at the car. He was so happy and when we took them to see the car his aphasia practically disappeared. I am really hopeful that this project will have a significant impact on his rehab; it certainly will form a key element of 'Project Jake's Joy'. I'll tell you more about that in another blog.
Yesterday was fairly standard aside from the fact that Jake has started to get to grips with texting and commenting on Facebook. As with his spoken word the aphasia is still affecting the words, but the understanding and meaning is definitely coming through. In response to my "hello my love" text I received "hey darling". Bloody fantastic!
Today I have found a cleaner. This has nothing to do with tbi rehab, I just wanted to gloat. So, back to the Case Manager duo's ambush last Thursday. We were due to meet with the weekend care providers for a routine review at 1:30pm, but the CM's wanted to meet an hour earlier. Well, the minute they walked through the door their tension and discomfort was palpable (am I really that scary?). We sat down in the lounge and there was much shuffling of papers and throat clearing. I finally begged them to say whatever it was that they were there to say and they finally told me; Jake is on the move again.
When I first heard this my overwhelming emotion was exasperation; he's only just got settled again since the last disastrously handled move and moving him again so soon seemed unthinkable. Fortunately I'm a very reasonable and adult individual (ahem) so I allowed them to explain.
The rehab focus is shifting to ensure Jake is ready to come home next year and that this return home is successful. So in December, assuming all stakeholders are in agreement, we will move from the Rehab Hotel to the student house (no really, that's exactly how it feels, right down to the labels on people's food cupboards!). The student house is a transitional living unit which is part of a larger Neuro Care Centre. The rationale behind this move is that the student house is less than 8 miles from home.
This will enable Jake to start connecting with the local Poole community, visiting the local gym / pool and accessing Headway rehab groups (swimming, gardening etc.), It will give us more flexibility in terms of coming home, so it feels less rigid and the occupational therapists can work with Jake in our home during the week which will make the rehab more meaningful.
Having got over the initial shock this feels like a good thing. Let's face it, it will be nice to not have to do 8 hours travelling back and forth from the rehab hotel every week!
Sometimes the advice we get from the professionals makes perfect sense and we dutifully take it on board and do our best to reflect it in our actions. Sometimes however I stick my fingers in my ears and sing 'la, la, la, I can't hear you'!
Let me give you an example; in the main, the phases of recovery that Jake is experiencing are painful, heartbreaking and frightening. There is a great deal of hope, but the process is bobbins.
This week, however, we have a phase that I personally think is brilliant. Put your hands together folks and give a warm welcome to traumatic brain injury induced disinhibition!
I know it doesn't sound all that good and if it was more extreme or the episodes more prolonged it would become a problem. I am assured though that at this point they believe Jake's is par for the course and 'normal' in the context of this stage of recovery.
Basically it's a bit like being stoned or a very happy drunk; everything is hilarious and he sees absurdity in the strangest things. Yesterday we were lying on his bed crying with unrestrained and uncontrolled laughter over his inability to find the right word; not something that's been all that amusing up to this point.
It has been explained to me that this extreme behaviour and the flip side which often sees him getting stuck in negative thoughts, doesn't reflect his actual levels of emotion. In other words if he is outwardly REALLY happy or sad, he's not actually feeling that good or bad, he just doesn't have the appropriate behavioural filters to manage it at the moment (let's be honest, we all know people like that!).
Yesterday his Speech and Language Therapist advised me not to engage or join in with this as my validating it will exacerbate this false behaviour. Well, I am totally bought into this advice from the perspective of the negative thoughts. But...but...really? It's so fantastic to see him so completely and unreservedly joyful; it's like a happiness atom bomb has gone off inside him and all the bright, white glee is exploding outwards and bathing us both in some long overdue joy.
Surely this eruption of happiness is good for him? It felt pretty good to me!
I'm sure I will take this advice on board eventually, but maybe I'll pretend I haven't heard it just for this weekend.
I leave you with an Imp of Doom update: some lovely people from the Imp Club are coming to Korving Towers THIS weekend to get an idea of what's needed to help us achieve our anniversary meet goal. One more reason to be happy!
Watching the news today I was struck by how easily our heroes fall; at the start of the year Jimmy Savile was a fondly remembered fund raising hero, Lance Armstrong was an inspiring sporting hero and survivor and John Terry was a respected national role model.
These are people about whom we are bombarded with carefully crafted PR and that we build pedestals for and so it is perhaps not that surprising when some of them slip off; maybe we need to start looking for our heroes in different places?
Well, I have had a look in my own life and have found literally hundreds, but there are two in particular I thought I would share with you.
The first is a man who has been part of mine and Jake's journey for the last 6 months, but who we are saying goodbye to today (hopefully only professionally). Sebastian started driving Jake when he was still in Boot Camp and when he couldn't walk, communicate or control his emotions. Back then we quickly came to rely on Sebastian to be sensitive, caring, thoughtful and never patronising. As time has moved on he has become more of a friend to us both and Jake is always pleased to see him, if not always pleased that he's being taken back to the Rehab Hotel! Seeing them shake hands and exchange small talk (even if it made no sense!) has been a really good benchmark of how things have moved on. From my perspective Sebastian has been flexible and understanding when things have had to change last minute, he has been empathetic and supportive when I have failed to hold it together, known when silence is the right thing and he has cheered me up with his quirky humour when I have been struggling to see the funny side. He even tolerated my endless fiddling with the radio!
It is people like Sebastian that make us feel safe and in control and, although it is exciting to be finally at the stage where I can drive Jake myself, we will no doubt miss him.
Thank you Sebastian.
The second is not one person, it is an organisation; The Imp Club. For those of you that don't know, Jake has a 44 year old Hillman Imp that he has had for 23 years. Next year is the 50th anniversary of the Imp and Jake was determined to finally get the 'Imp of Doom' as he calls it, fully restored in time for the anniversary club meet next Summer.
When we moved to our new home just 2 months before his accident, Jake finally had a garage and for the first time since he left his parents many years ago, his Imp, most of the spares he needed and his tools were all in one place. He was all set. And then life happened.
Well, this weekend for the first time since his accident Jake got excited about the car again. The challenge of course is that Jake had a wide range of physical and cognitive impairments that may or may not improve and so starting work on his beloved Imp is not something he can do alone.
All the medical experts agree that having an interest to focus on that he is passionate about will significantly help his recovery and I am desperate to help him to get the Imp to the anniversary meet.
Sadly I have neither the knowledge or capability to do this, so I appealed to the club for help and my timing could not have been better as yesterday was their AGM and Jake was an agenda item.
They got in touch to find out how they can help, are reinstating Jake's club membership on our behalf, are making me an associate member and clearly just want to do whatever they can without any expectations in return. I have also been contacted by members of the Imp Club forum with offers of help and support. These heroes don't know me from Adam and have only ever had contact with Jake on-line before, but they are keen to get involved and have restored my faith in human kind. Getting Jake and the Imp of Doom to the anniversary meet would be truly wonderful and the Imp Club heroes have made me feel that this may now be possible.
I wonder what heroes you already have in your life and who is waiting in the wings to step up and be heroic when you need them?
The problem with this frankly awful experience is that, despite continuing progress and the small, uplifting triumphs that thankfully still come, it is too huge and unpredictable a challenge to stay on top of. Everyday I get up, dust myself off and start again and everyday I feel so utterly helpless and inadequate; my beautiful Jake is having such a tough time at the moment and I would give anything to take it all away and would swap places with him in a heartbeat. I know it's pointless to feel this way, but I suppose what I am saying is ITS NOT BLOODY FAIR!
Imagine being a highly intelligent, successful and well respected man, finally settled in your personal life, starting to achieve great things in a new career that you switched to in your 30's, having already excelled in a previous career and looking forward to hopefully soon becoming a Dad. You are known for your quick wit and impressive vocabulary, people often turn to you for help, you can turn your hand to pretty much anything and you enjoy setting yourself and achieving stretching challenges like cycling from Lands End to John O' Groats unsupported...twice.
Now imagine slowly becoming aware that something is very, very wrong. You no longer have control of your mind, emotions or body. You can't find the words to express yourself anymore, and you can't understand what is being said to you. You have permanent double vision, you topple over if you try to stand or walk too quickly and you have gone from being strong and able, to needing help with pretty much everything. You get frightened, angry, upset and confused without really knowing why. You get stuck doing the simplest things and have to be guided and supported to achieve the most basic and personal tasks. You have to surrender your fate to others and feel so completely out of control it is crushing. Then someone tells you that this is because you have been in an accident which has left you with a severe brain injury, it happened nearly a year ago and no one can say how much you will recover, only that it will be a life long journey.
Everything that defined you has either changed or gone. The rug you were standing on has been well and truly pulled out.
I don't know about you, but I'm not sure I would survive this experience. Not my Jake though. He is undoubtedly struggling; he's not a machine, but his ability to pick himself up and keep on trying in the face of such a huge mountain to climb is both inspiring and heartbreaking. He is so hard on himself if he gets it wrong or can't do something (which happens a lot) that my role has become one of cheerleader, coach, counsellor and, sometimes, just listener.
I try to be strong for him, but I get so angry and overwhelmed by how bloody unfair all this is and I certainly don't think I would be able to find the strength to use humour to manage my anxiety and be self effacing when I repeatedly make the same mistake. My Jake does though.
He is terrified but determined, frustrated but focused, devastated but resolute.
If all of the pride, love and respect I feel for my husband escaped from within me it would envelop the world and Felix Baumgartner would have been able to see it from his balloon!
It's funny how other people respond to your crisis when it's a whopper; they are very careful around you, they watch what they say and they play down the stuff they have happening in their own lives because, as they often say to me "it's nothing compared to what's going on for you and Jake".
Well I have a theory about this. Don't worry, there's no actual physics, I'm incapable. My theory is that shit happens (I know, I'm a genius). Wait, don't go, there's more! Shit happens to all of us and it is completely relative to the experiences we have had up to that point.
So just to recap; shit is relative.
Let me explain. Before Jake's accident my life experiences were pretty tame; crisis was missing a deadline at work, a house purchase falling through, or having a disagreement with someone I cared about. So my shit spectrum was quite limited. This didn't invalidate the feelings of anger, frustration, fear or heartache I felt; in the sphere of my experience they were extreme. Jake's accident increased my shit spectrum; this doesn't change how I felt about those old experiences, it just means my perspective on them has shifted. It certainly doesn't mean I don't recognise or care about your crises.
We all have the resources to deal with what we have in front of us right now and if it feels like a crisis to us then that's OK, so long as we dig into those resources, don't let it overwhelm us and learn from it, hopefully increasing our shit spectrum as we go.
So next time you are about to play down the things that feel huge to you in the context of your shit spectrum; don't. Shit is relative and yours is just as valid and important as mine, it's just different.
And if your shit spectrum is limited then be grateful because it means that life has been kind to you so far.
First things first; I am pleased to report that the weekend went really well. So well in fact that Jake is going to come home for 48 hours every weekend, rather than every other.
We went to the paper shop, watched films, went for hot chocolate at the beach and generally had a lovely time. Jake has a cold and really hammed it up like he had the black death on Sunday morning to try and get out of going back to the hospital, but as I said to him, "aren't you the lucky one, going back to all those nurses!". Funny.
So what of progress generally? Back in the bad old acute days we used to talk about this journey as being a roller coaster and, although the climbs and dips are longer and less steep, I suppose it still is.
The current rides are aphasia (or dysphasia, depends who you're talking to) and developing insight.
We will start with the aphasia which is defined as:
"a condition characterised by either partial or total loss of the
ability to communicate verbally or using written words. A person with aphasia
may have difficulty speaking, reading, writing, recognising the names of
objects, or understanding what other people have said"
Just like cake (mmm...cake), aphasia comes in lots of different flavours. Jake's flavour is, I am told, 'very interesting'. Of course it is. His sentence structure is perfect, but his nouns and adjectives are all jumbled up. He also gets his prepositions wrong, so he says "when are you going?" when he means "when are you coming?". He can read and write (Sister in Law and I have had some very interesting texts), but again the words are jumbled. The good news is that both his receptive and expressive aphasia seem to be slowly improving and his Speech and Language Therapist, Catherine, is amazing. Jake has connected really well with her and he is co-operating in every session.
This is frustrating and exciting both at the same time; we never expected to get a text message from Jake again, but it is really tough for him to know what he wants to say, but have so much difficulty saying it.
This links to the developing insight challenge; Jake is starting to become more aware of what has happened to him. Unlike the rest of us, who have had 11 months to get used to this whole brain injury thing, Jake is right at the start of the change curve and is struggling. Add to that the fact that it is his injured brain and he can't properly express how this feels and you have a man who is frightened, confused, embarrassed, angry, remorseful (I know, silly bugger) and, frankly, a bit lost.
Again, this is heartbreaking for him, but exciting when you look at the bigger picture and consider how this further indicates the amazing progress he is making.
My good friend (and new boss - hurrah) Vicky is always banging on about the laws of creation and how you have to make things happen by thinking, believing and acting as though they will. So I have decided to start making some real life, long term plans of the holiday variety on the assumption that this progress will continue (yes, yes, I know, it has to end somewhere, but as no-one, not even the experts can say when, I intend to go the glass very full and brimming over route).
So, next September a group of us are taking Jake to Gran Canaria to a place he has been before and where he will feel safe for a week of well earned, medical professional free, relaxing. And then in October 2014, which just so happens to be our 5th wedding anniversary, we will be returning to New York where we married, to renew out vows. Jake doesn't remember our wedding, which is a shame as it was in Central Park and was completely amazing so it only seems fair to let him experience it again. Clearly this will be a dreadful chore for me, but I will make this sacrifice in the name of love. New York, New York...so good we married there twice!
I have no idea how we are going to pay for these trips, but if the last 11 months have taught me anything, it's that you can't worry about such details, you just have to crack on with life!
Stop what you're doing right now...no seriously, stop, just for a moment.
When was the last time you and the person you love most in the world stopped and spent time just enjoying each other? Not doing the shopping, chasing children around, thinking about work, bills, DIY, the washing?
I don't mean to lecture, but you see I have a unique perspective.
This weekend Jake is coming home for 48 hours for the first time and I can't wait. He has come home many times for 24 hours but this short time is spent either with Jake recovering from the journey, squeezing in visitors or building up to the time the taxi arrives to take us back to the rehab hotel. This weekend, for the first time in 11 months, we will have a genuine opportunity to just be. The whole of Saturday we will be together; we will wake up together, we will wander down to the paper shop together, watch a film together, play with the cats together, talk meaningless shit, go to sleep together. We will also be able to be in different rooms and be relaxed about it because we're not trying to cram in as much 'quality time' as possible. And we will still have a visitor on Sunday (really looking forward to seeing you Hats!), but we can relax and enjoy that visit because we won't resent it.
All a bit more normal and less like an event.
Taking off the rose tinted spectacles for a moment, there is no doubt that a 48 hour home visit will also be challenging; Jake has a severe brain injury and his deficits mean that he needs constant reassurance, support and care. We will have a carer to help in the mornings, but the reality is that this weekend will require a great deal of effort and patience from both of us.
Oh yes, effort and patience...and love and energy and understanding and humour and affection.
HELLO?!? How chuffing amazing is that?! Six months ago it seemed very unlikely that Jake and I would ever have a 'normal' weekend together again. We were facing the real possibility of long term residential care and now we are talking to the Rehab Hotel and PCT teams about a 3-6 month timetable to get Jake home permanently with independent living skills!
Honestly; do I need to use anymore exclamation marks? Stop what you're doing RIGHT NOW. Find that person and make sure they know how utterly essential they are to your survival and how completely you love them. Then get your diaries out and put some time aside just for you to be together. If you're not with that person yet, then make time for you because you are just as important. No excuses; someone will help with the work, kids, dogs, chores etc. etc. The only person who will stop this happening is you.
Don't wait to be in our position to decide that this matters; just take my word for it and stop, just for a moment, stop.
Quick update from sunny(ish) Spain. It is chuffing hot, but a bit cloudy and apparently we're going to have the mother of all storms tomorrow. You'll be pleased to hear that I have achieved my goal of bumming around and drinking too much, but I'm afraid I caved and unpacked. I tried not to, honestly, but I could feel my clothes eyeing me with disdain and it was putting me off my mojito. The apartment is ridiculously huge and I regularly find myself in the lounge sighing in irritation because I've left something in the bedroom and will have to get a taxi back to get it! Seriously, what do I need with two such huge bathrooms? The only thing for it seems to be to use a different one for each requirement, if you see what I mean ;o). It is also lovely to have a fully equipped kitchen with a large fridge freezer for the gin and ice and a dishwasher for the laziness. As to where I am staying, I wandered down into Puerto Banus yesterday and declare myself unimpressed; it's ugly and over commercial. The mix of the ostentatious wealth set and the package holiday Primark brigade is truly bizarre and the overall effect is that of a very confused and overly self conscious bad taste fancy dress party. Fortunately I am 2km away in a really quiet area and the apartment complex is very private and chilled. This morning I had the pool and hot tub just behind my apartment completely to myself; bliss. I am now sat in the local bar making the most of their free wifi and very reasonably priced mojitos. Tough gig huh? Of course the main reason I am here is to switch off from all things brain injury and relax. Unfortunately Jake chose Monday night (yes, that's right, my first night here) to fall and badly cut his eye necessitating a trip to A&E in an ambulance. He is fine by the way as he was at the weekend when he bounced his head off the edge of the radiator. Apparently Jake has yet to connect his current lack of balance with the laws of gravity and seems to be on a mission to prove how much more bouncy his head is since the accident. It's not. Suffice to say I didn't get very much sleep on Monday night and had a serious attack of the 'bad wife' heebies. Just in case I let go of this and relax too much though he's calling me at least twice a day to remind me how much he's missing me and how miserable he is. Ho hum. Give me a g "G", give me a u "U"' give me an i "I", give me an l "L", give me a t "T", what have you got? The need for a lot more mojitos...bartender? Uno mas por favor!
...sleep. Tomorrow I am off to Puerto Banus for 4 nights. I am going on my own and cannot tell you how much I'm looking forward to it. This is my itinerary: Day 1: Arrive at swanky apartment and marvel at my holiday selection prowess Think about unpacking Drink large gin Sleep Day 2: Wake up Think about unpacking Don swimwear Eat Walk Read Sunbathe Swim Sleep Eat Drink mojitos till they come out of my nose Read Sunbathe Swim Watch film Eat Drink several large gins / sangria Sleep Day 3: Repeat day 2 Day 4: Repeat day 3 Day 5: Repeat most of day 4 Congratulate myself for not bothering to unpack Come home Fight off furry idiots Sleep I am aware that some people will find this desire to go away on my own a little bit strange and I am also aware that some are a bit worried about it (honestly Mum, I'll be fine!). What you have to understand is how desperate I am to step outside of the brain injury bubble for a short while; to not have to talk or think about dyspraxia, dysphasia, care plans, CRT, sleep patterns, fatigue, seizures, liability, court of protection, CPS knobs, funding, etc, etc, etc.... Going away on my own means that I can be me, Mrs K the person, not 'that poor woman whose husband has a severe brain injury'. Hang on, hang on, back away from the righteous indignation; I'm not trying to forget about my Jake, I will be calling him every day, I will miss him more than you can imagine and I am already looking forward to spending next weekend at home with him. It is the drama and the angst of the last 11 months I am trying to forget and I'm fairly sure he would understand, aren't you? Well I think he would and I have reached the point where I'm not interested in hearing if you don't, so there! So, at any point next week, feel free to imagine me slumped on a sun lounger in a mojito induced haze attempting to focus on my Kindle. It is my intention to dodge all make up, hair styling products, proper clothes and any non-alcohol based fluids after 3pm. I shall make up outrageous lies about myself should anyone try to pry and I shall absolutely refuse to be drawn on why I am travelling without my husband, although I may hint at some sort of shark wrestling, deep cover, espionage type stuff that has necessitated our separation. Huge thanks to those visiting my Jake whilst I'm away and also to those caring for the two furry idiots who will be doing their best to trash the house in my absence.
The problem with a brain injury recovery journey like ours' is that as soon as the choppy waters seem to have calmed someone lobs a bloody great stone in. As you will remember, Jake was due to be moved off the behavioural pathway and on to the main rehab pathway; viewed as a good move by all. The plan was to make this move in a graded transition over 2-3 weeks so Jake would have the chance to get used to the new environment, build new relationships and understand what was happening before moving permanently. Sound sensible? Yes, we thought so too. Unfortunately, due to a surprise visit from the CQC who insisted on another patient being moved onto his ward (which was full), Jake was moved at 9pm the Friday before last, with no warning and no graded transition. Err hello? Jake has a severe brain injury, struggles with change and finds it very difficult to form new relationships. Brilliant. Add to all this the fact that he was moved to a ward where many of the other patients deficits were significantly more obvious than he'd seen before and therefore very frightening to someone who doesn't really get that he has a brain injury and you can imagine how confused, upset and terrified he was. Cue a return to the bad old Boot Camp days with Jake getting very distressed and begging me to take him home. Up to this point the rehab hotel team had only seen the lovely, cuddly version of Mrs K and so I think they were a bit surprised by the 'mess with my husband and feel my wrath' Mrs K now showing her teeth. The upshot of the discussions that followed this change in my demeanour on Monday being that Jake would be moved the next day to a brand new ward which is quieter and much more focused on promoting independence. I took Jake over to the new ward explained what was happening as much as was possible and we were all set. So, the next morning I arrived, reminded Jake of the move (which he seemed to be happy about) and we sat together on his bed waiting for the team to come and help us. Then a nurse arrived and announced "we're not moving him, the PCT won't fund it". I'm ashamed to say I went ballistic. I told the ward manager that I was taking Jake to the cafe for an ice cream and when we came back we would either be moving to the new ward or going home, both of us. I also rang the PCT and was less than polite to the poor woman that answered the phone, but I'm trying to forget about that, it being less than my finest moment. So, as weeks go, it wasn't turning out that well. And then my phone rang and it got worse, on a major scale. The criminal case (you know, the one that has to happen before we can move forward with the civil case and gain any view of our future) has been postponed again...until NEXT YEAR! At that point control slipped from my fingers, all of my defences crumbled and I just sort of stopped. It was weird; I felt as though all my senses had shut down and everything was just white noise for a few seconds. Then I remembered that Jake was there and he needed me. Don't get me wrong; I'm not a machine and I balled like a baby, but I realised I had to get grip.
So, today Jake is safely installed in the shiny new ward (the nurse was wrong, the PCT just wanted to clarify why they were moving Jake again to make sure it was in his best interest - when will these people get communication skills training?), I am getting my head around another 3-4 months of uncertainty and everyone at the rehab hotel is working together to try and help Jake adjust. He's finding it very difficult (refusing to eat or engage...sound familiar?), but they're throwing everything at sorting it, so hopefully he'll be settled again soon. And so we go on. Between you and me this brain injury game is rubbish - I'd stick to Monopoly or Twister if I was you.
Currently I am experiencing a serious lack of motivation. I seem to have run out of steam. There is still plenty happening, I just don't seem to be able to get excited, I feel a bit flat. I am neglecting everything; the garden, the house, my course work, friends and family, my book, my get fit regime. Clearly I need to do something about this or I'll be as useful to Jake as Robert Mugabe at a peace convention. My sophisticated plan to combat this can be summed up very simply; get a kitten and book a holiday. So that's what I've done!
Merkin (snigger) is a 5 month old black kitten who spends his time shouting, annoying our other cat Milo and racing around like a loon. He took to Jake immediately and the two of them spent last weekend amusing each other. He's cute isn't he?
Puerto Banus is where I am going for four nights in mid September. I am going completely on my own (eek) and plan to spend my time lying by the pool, reading, sleeping and walking. This is all a bit of a revelation as there is absolutely no way I would have been happy to leave Jake for this long 8 weeks ago. It's a real testament to how amazing the team at the rehab hotel are and how happy and settled they have made Jake. A huge thank you to the friends and family who are going to spend time with my Jake that week so I don't need to worry about him. In other news, I start work again on the 1st October for 20 hours a week and the few adhoc hours I have done over the last couple weeks have reminded me that actually I do have a brain and it is good to use it! Hopefully all this will help me to get back to being me so I can continue to be useful to my gorgeous Jake and keep on keeping on.
As I sit here writing this I can hear banging, crashing, swearing and some hilarious singing along to the radio. Yes, I've got the builders in. I have, sadly, had my last, long soak in our bath which was ripped out yesterday to make way for a wet room that Jake can safely use. I have spent many happy hours choosing tiles and fittings and generally irritating the builders by repeatedly changing my mind; it's almost like having Jake here to annoy! That said, I am still able to annoy Jake on a regular basis as I am at the rehab hotel at least twice a week and he usually comes home for 24 hours each weekend, so plenty of opportunity to be irritatingly wifely. The good news from the rehab hotel is that Jake has been assessed as ready to transfer off the behavioural pathway and onto the mainstream rehab pathway, which means stepping up the therapy and hopefully the progress. As a non medical professional I am still regularly wrong footed and upset by some of Jake's behaviour, but they continue to reassure me that it is perfectly normal for someone with Jake's deficits and they will continue to work with him to help him to manage this. The most upsetting aspect of this is other peoples' reaction to Jake's outbursts; people who don't understand about brain injury and assume that the behaviour is the man. This led to me wanting to repeatedly smash a haughty, thoughtless receptionist's head against her desk at the ortho clinic we visited yesterday. Apparently Jake's behaviour would 'frighten the children' they sometime have visiting and it 'wouldn't be fair' for them to have to be there at the same time as him. Well guess what; there is nothing 'fair' about any of this. Jake didn't choose to be knocked off his bike by a careless driver, he didn't choose his severe brain injury and sometimes he is so anxious, confused, fatigued, overloaded and frustrated that he looses control. No, not fair at all you snotty cow. Thankfully I'm a big believer in karma, so I'm confident that she'll get hers. I suppose these are things we will need to get used to; rest assured I will continue to fiercely protect my beautiful boy from these idiots; he deserves so much better from the world. Maybe that should be my motivation?
Well people, its been another roller coaster week. You'd think after nine months things would have evened out and, as a rule, they have. Every so often though we are reminded that this is no ordinary situation and standing in my PJ's at 11:30pm on Friday night chatting to three paramedics was a fine example of this.
Jake has a UTI (bladder infection to you and me). The good news is that they no longer overwhelm his body and he copes much in the way we would. The bad news is that any infection can trigger a seizure; we haven't had a seizure for months and were all hoping that they were either easing off (as they sometimes do), or at least being managed by the cocktail of drugs Jake has to take. Sadly this was not to be and so, in bed on Friday night, Jake began to spasm on his left side. Bugger.
A seizure wouldn't normally require an ambulance; we are lucky in the fact that Jake's seizures tend to be short lived and self terminating and the treatment is nothing more complex than lots of rest. The problem is that Jake's difficulties with language mean that getting a clear response to a question is difficult. So, when Jake clutched his chest and was asked the question 'do you have chest pain?' his answer of 'we think so' put together with the spasms being mainly in his left arm and his having an existing heart defect, was sufficiently worrying that we didn't mess around.
The ambulance arrived within three minutes and the crew were absolutely fantastic. Lots of tests confirmed that thankfully it was 'just' a seizure. Jake was brilliant up to the point when I needed to pull the ECG pads from his body. Apparently this hurts quite a lot...apparently he doesn't like me very much!!
Ho hum, thems the breaks!
But wait my hopeful friends; there's plenty of good stuff to report as well. Three excellent examples being;
1. Jake no longer suffers the extreme distress we experienced on the journey to and from home at the weekends. The psychologist travelled with us on Friday and is happy to conclude that this distress was triggered by over stimulation and not trauma as we had feared. Now that he understands where we are going he no longer has to focus on it, reducing the stimuli and making him calmer.
2. The catheter is coming out (woo hoo!!!). The bladder retraining has been going really well and they are going to take advantage of the antibiotics he is taking for the UTI, which will help him heal and manage the change over. Fully continent people, oh yeah!
3. The bit of his brain where humour lives has decided to rejoin us. Sarcasm is making a particularly spectacular return, most notably in my direction!
My favourite example of Jake using his special brand of Korving humour is from a therapy session with his fabulous key worker Sarah (I am hoping to adopt her). During one of his regular sessions in the standing frame Jake was being distracted by a game of noughts and crosses (apparently standing in a frame for 15 minutes is pretty boring, no matter how good it is for your ankles). The frame has a table attached to enable this kind of distraction and two games had already been played. Starting to tire, Jake was encouraged by Sarah to play 'just one more game'. You can see Jake's response to this request below. Yes, that's right, he wrote 'bollocks' in the square.
He may have dysphasia, but it seems that he has no problem communicating when he really wants to!
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
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!