I realise that this next statement may make me unpopular, but I'm in Anitgua. Sorry.
I've never been to a Caribbean Island before and I can report it's absolutely and completely beautiful. In fact the word that springs to mind is fecund; it's so abundant, lush, fertile. There is a wonderful sense of community and I think this is because, although the economy is driven by tourism, where my friend lives there are lot of expats and so everyone, Antiguan or otherwise, just rubs along together. The wonderful, mellow rhythm is reflects the nature of the people and instantly puts you at ease, although I have had some interesting propositions, including a very generous offer to impregnate me, but I've never felt uncomfortable or unsafe, in fact I have really enjoyed being able to slip into banter with complete strangers; it's all very good food for the soul.
You'll notice I haven't mentioned Jake. This is because he is still at home in Dorset; I have come to visit friends on my own to take a break, get some perspective and recharge my severely drained batteries. Jake has his (and my) favourite PA staying with him and a host of friends and family to entertain him. I have spoken to him most days via Skype and he is thoroughly enjoying himself and all the attention.
I am so grateful to my friends Vicky, Dion and Mikey for allowing me to descend on them and their new home (yes of course I'd have visited them if they lived somewhere less exotic....honest). They have real lives to live and I'm not sure they realise the magnitude of this kindness and the impact it has had on my sanity and well being.
The ugly truth is that the last two years have been horrendous but I am finally able to stand back and REALLY see all that we have faced and achieved. What I also see is that, through necessity, we have created a kind of co-dependency; Jake has needed me and I have needed him to need me. In the short term there was no choice, this was how we had to live. But now, well, now the other ugly truth is that this co-dependency has morphed into something unhelpful and unhealthy. It is stopping both of us from learning who we are now, finding a sense of ourselves and working out what the hell we want to do with the rest of lives. We have no chance of having a great marriage if we can't work out who we are as individuals...and I really believe we can have and deserve a great marriage.
So, what this week away has taught me is that we can do this. We can survive apart and that this will make the times we are together better.
As the aforementioned favourite PA shared recently; "he's more cooperative when you're not here Charlie", I'm guessing we're not the only husband and wife this applies to!
Tuesday, 26 November 2013
Saturday, 26 October 2013
Two years on...imagine that
Today is the two year anniversary of Jake's survival against all the odds; sometimes it feels like a blink of an eye, sometimes it feels like a lifetime.
When I think about some of the drama, terror and bleak prognosis of the early days it seems extraordinary that we are where we are today (today will be a pyjama day followed by dinner at a favourite pub down on the Quay to celebrate, since you ask).
I thought that this milestone would be a good time to share what life is like now.
From the outside in I imagine our life looks pretty good in relative terms; we have a lovely new home, a civil claim that seems to be reaching a successful conclusion and the resources to get Jake the support he needs to continue to defy those early bleak predictions for his recovery.
On the inside life is challenging, complex and beset by a raft of what my leadership development colleagues would describe as 'wicked problems'.
The devil is in the detail you see; yes, Jake is mobile, doubly continent, eating a normal diet, communicating (to a degree) and able to access a wide range of activities. We go out, laugh often and have each other. So on the surface it all looks pretty good right?
Wrong. Imagine for a moment, if you can, that you are terrified of anything new and your short term memory deficits mean that most experiences feel new, even if you only did them last week. Then imagine that your confidence and self esteem are on the floor. Then imagine that the bit of your brain where the ability to motivate yourself is damaged. So far, so tricky.
Then, imagine that you have been supported to capture and access your memories of successful past experiences, which helps you to overcome your lack of confidence and to motivate you to actually want to do something...and then imagine that the part of your brain that enables you to initiate, that is to actually get started, is also damaged and despite everything you hit a new wall. Add to this difficulties in managing your emotions and the behaviour they trigger and the complete and utter exhaustion you experience after even the simplest of tasks.
Then imagine that both your understanding and expression of language is so severely impaired that you can't properly express your fear, frustration and humiliation or understand much of the reassurance or support those around are trying to give you.
Then imagine that you are a 43 year old man who is only just beginning to understand that he has a brain injury, that life will never, ever be the same and for whom each day is a mountain to climb, even if all he has to do is get up and dressed.
To quote Winston Churchill, "It is a riddle, wrapped in a mystery, inside an enigma".
So yes, from the inside things are tough...and yet...and yet, two years is such a short time in brain injury recovery terms. We have a new psychologist who is working with us both and has already had a huge impact after just two visits. There are many strategies and work arounds that we have yet to explore that could help us to start to unpick some of these problems. We are getting a puppy (very exciting...assuming you're not one of our cats of course!) who will hopefully be a one dog motivation and purpose machine. We are starting to make meaningful connections with people in the same predicament locally which gives us both a sense of not being in it alone.
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We went on holiday recently with SIL, Jake's best friend and his wife and a long time family friend which was a massive success and gives me real hope for future trips (I'm not sure I'll ever be able to thank them all enough for giving up their precious holiday time, leaving families and loved ones and making what felt like the impossible real). So there is definitely still plenty of opportunity for hope to continue to go up.
If I could ask for one thing at this moment it would be for us to see more of Jake's pre-injury friends; every book out there about brain injury highlights this as an issue and we do understand that there are very good reasons why this happens. When Jake was in hospital his friends were amazing, but in reality I benefited more from that than Jake and it is now when he is wrestling with his identity and feeling lost that he really needs you. Please don't feel pressured, just give it some thought and know that there is an open invitation anytime.
830 days in and in many ways we are incredibly lucky. Jake continues to be gladiatorial, inspirational and brave. His courage and stoicism takes my breathe away and I love him more every day.
It has become a routine for us to lie in the dark each night talking about what has happened as Jake works it through, grieves for what he has lost and comes to terms with his future. Last night my extraordinary man moved me to tears yet again by declaring 'I can do it...I'm going to win'.
Imagine that!
When I think about some of the drama, terror and bleak prognosis of the early days it seems extraordinary that we are where we are today (today will be a pyjama day followed by dinner at a favourite pub down on the Quay to celebrate, since you ask).
I thought that this milestone would be a good time to share what life is like now.
From the outside in I imagine our life looks pretty good in relative terms; we have a lovely new home, a civil claim that seems to be reaching a successful conclusion and the resources to get Jake the support he needs to continue to defy those early bleak predictions for his recovery.
On the inside life is challenging, complex and beset by a raft of what my leadership development colleagues would describe as 'wicked problems'.
The devil is in the detail you see; yes, Jake is mobile, doubly continent, eating a normal diet, communicating (to a degree) and able to access a wide range of activities. We go out, laugh often and have each other. So on the surface it all looks pretty good right?
Wrong. Imagine for a moment, if you can, that you are terrified of anything new and your short term memory deficits mean that most experiences feel new, even if you only did them last week. Then imagine that your confidence and self esteem are on the floor. Then imagine that the bit of your brain where the ability to motivate yourself is damaged. So far, so tricky.
Then, imagine that you have been supported to capture and access your memories of successful past experiences, which helps you to overcome your lack of confidence and to motivate you to actually want to do something...and then imagine that the part of your brain that enables you to initiate, that is to actually get started, is also damaged and despite everything you hit a new wall. Add to this difficulties in managing your emotions and the behaviour they trigger and the complete and utter exhaustion you experience after even the simplest of tasks.
Then imagine that both your understanding and expression of language is so severely impaired that you can't properly express your fear, frustration and humiliation or understand much of the reassurance or support those around are trying to give you.
Then imagine that you are a 43 year old man who is only just beginning to understand that he has a brain injury, that life will never, ever be the same and for whom each day is a mountain to climb, even if all he has to do is get up and dressed.
To quote Winston Churchill, "It is a riddle, wrapped in a mystery, inside an enigma".
So yes, from the inside things are tough...and yet...and yet, two years is such a short time in brain injury recovery terms. We have a new psychologist who is working with us both and has already had a huge impact after just two visits. There are many strategies and work arounds that we have yet to explore that could help us to start to unpick some of these problems. We are getting a puppy (very exciting...assuming you're not one of our cats of course!) who will hopefully be a one dog motivation and purpose machine. We are starting to make meaningful connections with people in the same predicament locally which gives us both a sense of not being in it alone.
We went on holiday recently with SIL, Jake's best friend and his wife and a long time family friend which was a massive success and gives me real hope for future trips (I'm not sure I'll ever be able to thank them all enough for giving up their precious holiday time, leaving families and loved ones and making what felt like the impossible real). So there is definitely still plenty of opportunity for hope to continue to go up.If I could ask for one thing at this moment it would be for us to see more of Jake's pre-injury friends; every book out there about brain injury highlights this as an issue and we do understand that there are very good reasons why this happens. When Jake was in hospital his friends were amazing, but in reality I benefited more from that than Jake and it is now when he is wrestling with his identity and feeling lost that he really needs you. Please don't feel pressured, just give it some thought and know that there is an open invitation anytime.
830 days in and in many ways we are incredibly lucky. Jake continues to be gladiatorial, inspirational and brave. His courage and stoicism takes my breathe away and I love him more every day.
It has become a routine for us to lie in the dark each night talking about what has happened as Jake works it through, grieves for what he has lost and comes to terms with his future. Last night my extraordinary man moved me to tears yet again by declaring 'I can do it...I'm going to win'.
Imagine that!
Sunday, 1 September 2013
Looking back
A quick update to start us off; we are finally in the new Korving Towers and, although we had a couple of unsettled weeks, it now feels like home with the extra space making an immediate and positive impact on general sanity levels. The furry idiots are still establishing boundaries with the neighbours' cats and there are some hilarious games of cat chess in the garden often involving some very dramatic growling but very few actual fights!
The NHS review meeting went well and we have been granted a further 3 months funding taking us up to Christmas which will mean an incredible 18 months rehabilitation funding on top of the 8 months in an acute setting; we've definitely had our money's worth from Jake's national insurance contributions! This ties in with a settlement meeting for the civil case in December, so who knows what the New Year will bring; I'm working on the basis that all will be well and that 2014 will be the year when we start to get our lives back on track together with a real sense of what that will look like.
That's all in the future though and this week has been more about looking back. As part of the litigation process Jake and I have to go through endless expert witness sessions. These are deeply unpleasant, often lengthy yet necessary interviews and assessments that force you to face the darkest aspects of what has happened. This is particularly painful for my boy as he is only just becoming aware of how fundamentally his life has changed; we work very hard at adapting to and making the absolute best of our current situation and these meetings cruelly undermine those efforts.
On Thursday afternoon we travelled up to Wimbledon for an expert witness meeting with a Neuro Psychiatrist and it was pretty much the worst one so far. We emerged from his office at 8:45pm dazed, exhausted and laughing with hysteria and incredulity at a truly bizarre and often upsetting 3.5 hour experience. Thankfully our friends Andy & Fiona were there to feed us pizza nd beer and help us to laugh about it.
What this journey to Wimbledon did give us was a great excuse to go back to St George's where Jake worked, where they saved his life (repeatedly) and where he spent the first three months after the accident.
It was a bit weird to be honest. I had imagined it so many times in my head; the triumphant return, the joy, amazement and pride. The reality was a bit of an anticlimax; we arranged to meet the team at 11am but they didn't show up until 11:35am after several calls and pages. I felt dreadful because I realised that this visit was more for my benefit than for Jake's; it was awkward and upsetting and, although it was good to see some of the people that held me together in those early months and for them to see how well Jake is doing, it wasn't such a great experience for him.
What was a good experience for him was meeting up with four of his colleagues in the cafe afterwards. Jake has a range of issues with his memory, including finding it hard to put people, events and places together. This means that when I told him about the people we were going to meet he didn't know who I meant, but the look on his face when they walked into the cafe was absolutely brilliant. "My God, it's YOU!" he declared, beaming from ear to ear. The next hour flew by and I realised that this was the return Jake needed. These people were his friends, they gave context to where we were and allowed him to feel like Jake the radiographer, rather than Jake the brain injured patient.
We will definitely go back, but it will be to see Jake's colleagues and friends and won't be a visit burdened by so much expectation.
Friday night took us to a friend's 50th Birthday party in Jake's hometown which meant catching up with more old friends but also meant, on top of all Thursday and Friday's activity, Jake is completely and utterly exhausted and has been sleeping since yesterday afternoon. I'm not expecting him to emerge from his fatigue laden slumber until tomorrow and the furry idiots are delighted by an opportunity to take advantage of this combination of Jake's warm body and the duvet for a whole day!
The NHS review meeting went well and we have been granted a further 3 months funding taking us up to Christmas which will mean an incredible 18 months rehabilitation funding on top of the 8 months in an acute setting; we've definitely had our money's worth from Jake's national insurance contributions! This ties in with a settlement meeting for the civil case in December, so who knows what the New Year will bring; I'm working on the basis that all will be well and that 2014 will be the year when we start to get our lives back on track together with a real sense of what that will look like.
That's all in the future though and this week has been more about looking back. As part of the litigation process Jake and I have to go through endless expert witness sessions. These are deeply unpleasant, often lengthy yet necessary interviews and assessments that force you to face the darkest aspects of what has happened. This is particularly painful for my boy as he is only just becoming aware of how fundamentally his life has changed; we work very hard at adapting to and making the absolute best of our current situation and these meetings cruelly undermine those efforts.
On Thursday afternoon we travelled up to Wimbledon for an expert witness meeting with a Neuro Psychiatrist and it was pretty much the worst one so far. We emerged from his office at 8:45pm dazed, exhausted and laughing with hysteria and incredulity at a truly bizarre and often upsetting 3.5 hour experience. Thankfully our friends Andy & Fiona were there to feed us pizza nd beer and help us to laugh about it.
What this journey to Wimbledon did give us was a great excuse to go back to St George's where Jake worked, where they saved his life (repeatedly) and where he spent the first three months after the accident.
It was a bit weird to be honest. I had imagined it so many times in my head; the triumphant return, the joy, amazement and pride. The reality was a bit of an anticlimax; we arranged to meet the team at 11am but they didn't show up until 11:35am after several calls and pages. I felt dreadful because I realised that this visit was more for my benefit than for Jake's; it was awkward and upsetting and, although it was good to see some of the people that held me together in those early months and for them to see how well Jake is doing, it wasn't such a great experience for him.
What was a good experience for him was meeting up with four of his colleagues in the cafe afterwards. Jake has a range of issues with his memory, including finding it hard to put people, events and places together. This means that when I told him about the people we were going to meet he didn't know who I meant, but the look on his face when they walked into the cafe was absolutely brilliant. "My God, it's YOU!" he declared, beaming from ear to ear. The next hour flew by and I realised that this was the return Jake needed. These people were his friends, they gave context to where we were and allowed him to feel like Jake the radiographer, rather than Jake the brain injured patient.
We will definitely go back, but it will be to see Jake's colleagues and friends and won't be a visit burdened by so much expectation.
Friday night took us to a friend's 50th Birthday party in Jake's hometown which meant catching up with more old friends but also meant, on top of all Thursday and Friday's activity, Jake is completely and utterly exhausted and has been sleeping since yesterday afternoon. I'm not expecting him to emerge from his fatigue laden slumber until tomorrow and the furry idiots are delighted by an opportunity to take advantage of this combination of Jake's warm body and the duvet for a whole day!
Tuesday, 30 July 2013
Tired but hopeful
Wide awake again in the middle of the night so I thought I'd take the opportunity to update you on how things are going in brain injury land.
Works on the new Korving Towers are progressing well (it's looking fabulous!) and we are moving in next Monday. New tenants have been found for the current Korving Towers and everything seems to be slotting into place, including the all important transportation of the Imp of Doom.
Moving house is stressful at the best of times and this is most certainly not the best of times. To counter this I am doing everything possible to minimise the impact including having a full packing service from the removals company, which sounds great in practice, but there is something really unsettling about a bunch of hairy arsed blokes packing up all your belongings; I'll probably pack my own knickers!
Jake has moments of calm clarity when he sees that this move is a very good thing for all concerned. Sadly these are the exception and he is mainly frightened by the prospect of change.
Due to the nature of his injuries Jake struggles with change both emotionally and cognitively. It has taken 6 months of a carefully managed and structured errorless learning approach to get him to the stage where he is almost self sufficient in his morning routine, needing only minimal prompting and assistance to get up, showered and dressed. When we move to the new Korving Towers, despite trying to mitigate the impact by reflecting as much as possible the decor and layout of our current home, Jake will lose some of that learning because the visual and procedural cues will have changed. He will also have to relearn where different rooms are and be confident about where he should go when and what for. Sounds simple? Think again, it's taken months for him to get to that stage where we are now. It's not surprising that he's on edge.
This means a rocky road ahead as it comes at the same time as a sudden increase in insight and therefore understanding of the magnitude and impact of what has happened to him. The worst aspect of this is his belief that I'd be better off without him and his attempts to push me away. He is REALLY good at pushing my buttons and this usually ends in an upsetting exchange quickly followed by a rush of regret and panic from Jake. This is very distressing for him and he needs loads of TLC, patience and understanding right now, so if you're his friend and in the area do pop in and see him, it would definitely give him a boost.
The good news is that he's achieved so much at the current KT and so we know that with the right support and a bit of time he will do the same at the new KT. The extra space will make a massive difference to us both as will the week in Gran Canaria with good friends and family at the end of September, so its short term pain for what will hopefully be long term gain and better times ahead.
Next week also sees the full review meeting to assess how Jake's NHS funded intensive rehab programme is going and where we go from here, so there will be lots to update in my next blog. Hopefully I'll have slept before then!
Works on the new Korving Towers are progressing well (it's looking fabulous!) and we are moving in next Monday. New tenants have been found for the current Korving Towers and everything seems to be slotting into place, including the all important transportation of the Imp of Doom.
Moving house is stressful at the best of times and this is most certainly not the best of times. To counter this I am doing everything possible to minimise the impact including having a full packing service from the removals company, which sounds great in practice, but there is something really unsettling about a bunch of hairy arsed blokes packing up all your belongings; I'll probably pack my own knickers!
Jake has moments of calm clarity when he sees that this move is a very good thing for all concerned. Sadly these are the exception and he is mainly frightened by the prospect of change.
Due to the nature of his injuries Jake struggles with change both emotionally and cognitively. It has taken 6 months of a carefully managed and structured errorless learning approach to get him to the stage where he is almost self sufficient in his morning routine, needing only minimal prompting and assistance to get up, showered and dressed. When we move to the new Korving Towers, despite trying to mitigate the impact by reflecting as much as possible the decor and layout of our current home, Jake will lose some of that learning because the visual and procedural cues will have changed. He will also have to relearn where different rooms are and be confident about where he should go when and what for. Sounds simple? Think again, it's taken months for him to get to that stage where we are now. It's not surprising that he's on edge.
This means a rocky road ahead as it comes at the same time as a sudden increase in insight and therefore understanding of the magnitude and impact of what has happened to him. The worst aspect of this is his belief that I'd be better off without him and his attempts to push me away. He is REALLY good at pushing my buttons and this usually ends in an upsetting exchange quickly followed by a rush of regret and panic from Jake. This is very distressing for him and he needs loads of TLC, patience and understanding right now, so if you're his friend and in the area do pop in and see him, it would definitely give him a boost.
The good news is that he's achieved so much at the current KT and so we know that with the right support and a bit of time he will do the same at the new KT. The extra space will make a massive difference to us both as will the week in Gran Canaria with good friends and family at the end of September, so its short term pain for what will hopefully be long term gain and better times ahead.
Next week also sees the full review meeting to assess how Jake's NHS funded intensive rehab programme is going and where we go from here, so there will be lots to update in my next blog. Hopefully I'll have slept before then!
Friday, 12 July 2013
40 sucks
This might sound pathetic,
but I am feeling very sorry for myself right at this moment.
You see it's my 40th Birthday this weekend. Aside from the obvious feelings of impending old age and the sagging of, well, everything, I am sad because my husband isn't interested.
With some cajoling and Starbucks related bribes he was encouraged to go out with his PA to buy me some gifts, but he wouldn't have done this if I hadn't arranged it. I also arranged for him to make me a cake which, sadly, he couldn't really be arsed to do. I had to contact his deputy to suggest that it was reasonable to assume Jake might have bought me a special gift and could he liaise with Jake's sister...and then I had to ask her to remind him. I told Jake that lots of people were coming to celebrate with us tomorrow and he said 'I might come out for a bit'.
This might all sound petty and you might be thinking I'm ungrateful because I still have a Jake and he is better than anyone expected. But it's my 40th Birthday and I'm having to sort out my own catering, cake, bunting, invitations, etc. etc. etc. because my husband can't do most of it and it wouldn't occur to him to do what he could. Frankly this is heart breaking and makes me feel like shit. Sorry and all that, but there it is.
Having to provide endless love, support and care to someone who, most of the time treats you like staff is in a weird way made worse because he doesn't realise he's doing it and really doesn't want to hurt me, because then I can't even be angry at him. What a stupid bloody situation.
I am also sad because my husband isn't really interested in anything. Since his shunt revision we have started to see what was really going on and clearly his shunt had been failing for some time. A lot of this has been very positive with small but definite improvements in most areas. Unfortunately, some things have got worse and the extent of his frontal lobe damage is worse than initially thought. He is thoughtless and rude one moment and remorseful the next. His motivation has evaporated and so he spends all day in bed, doing the bare minimum and immediately losing his temper if you try to get him to do something, even if it's something you know he'll really enjoy. His perseveration has got much, much worse and sometimes he gets so stuck on a subject or thought you can see his confusion and frustration escalating as he obsesses, powerless to stop. This never ends well.
I completely realise that this is horrible for Jake, but it is also utterly exhausting and soul destroying to have to answer the same question again and again for hours, knowing that, due to his language and cognitive issues, he is probably unable to hear or focus on the answer and will continue to obsess and continue to ask.
This apathy, lack of caring and indifference terrifies me. It is so alien to the Jake I married and fills me with dread for the future. So right at this moment my considered opinion is that 40 sucks.
You see it's my 40th Birthday this weekend. Aside from the obvious feelings of impending old age and the sagging of, well, everything, I am sad because my husband isn't interested.
With some cajoling and Starbucks related bribes he was encouraged to go out with his PA to buy me some gifts, but he wouldn't have done this if I hadn't arranged it. I also arranged for him to make me a cake which, sadly, he couldn't really be arsed to do. I had to contact his deputy to suggest that it was reasonable to assume Jake might have bought me a special gift and could he liaise with Jake's sister...and then I had to ask her to remind him. I told Jake that lots of people were coming to celebrate with us tomorrow and he said 'I might come out for a bit'.
This might all sound petty and you might be thinking I'm ungrateful because I still have a Jake and he is better than anyone expected. But it's my 40th Birthday and I'm having to sort out my own catering, cake, bunting, invitations, etc. etc. etc. because my husband can't do most of it and it wouldn't occur to him to do what he could. Frankly this is heart breaking and makes me feel like shit. Sorry and all that, but there it is.
Having to provide endless love, support and care to someone who, most of the time treats you like staff is in a weird way made worse because he doesn't realise he's doing it and really doesn't want to hurt me, because then I can't even be angry at him. What a stupid bloody situation.
I am also sad because my husband isn't really interested in anything. Since his shunt revision we have started to see what was really going on and clearly his shunt had been failing for some time. A lot of this has been very positive with small but definite improvements in most areas. Unfortunately, some things have got worse and the extent of his frontal lobe damage is worse than initially thought. He is thoughtless and rude one moment and remorseful the next. His motivation has evaporated and so he spends all day in bed, doing the bare minimum and immediately losing his temper if you try to get him to do something, even if it's something you know he'll really enjoy. His perseveration has got much, much worse and sometimes he gets so stuck on a subject or thought you can see his confusion and frustration escalating as he obsesses, powerless to stop. This never ends well.
I completely realise that this is horrible for Jake, but it is also utterly exhausting and soul destroying to have to answer the same question again and again for hours, knowing that, due to his language and cognitive issues, he is probably unable to hear or focus on the answer and will continue to obsess and continue to ask.
This apathy, lack of caring and indifference terrifies me. It is so alien to the Jake I married and fills me with dread for the future. So right at this moment my considered opinion is that 40 sucks.
Sunday, 23 June 2013
Hope goes all over the place
So, to catch you up on all that has happened since my last post. If you remember, Jake had just had his shunt revision operation following a shockingly bad first hand experience of the ineffective communication and organisation rife some parts of the NHS.
Well, I'm afraid things didn't improve. If you possibly can, avoid Southampton Hospital. Seriously.
At no point after his operation did a Dr of any kind come to tell us how it had gone and what we should expect. Jake was finally moved to a medical ward in to a bed with someone elses name and dietary requirements above it until I arrived and pointed it out. He was then held captive on this ward, where no one had read his notes (again) for three days. This meant that, despite me telling them every time I came in and the sign I put above his bed spelling it out in capitals, they kept calling him by the wrong name that no one ever calls him (it's complicated but Jake is actually Jason). They alarmed his bed to stop him from getting up and walking about and then gave him anti-coagulant injections in his stomach every day because he was immobile; madness. And all this because they were fixed on sending him back to Poole 'rehab' rather than home as he was 'still very confused, aphasic and unsteady'...you know, those chronic conditions that are normal for Jake which they would have known if they'd just READ THE BLOODY NOTES.
I called the Poole brain injury registrar Dr King (who is lovely) first thing on Monday morning and agreed with her that there was no reason for Jake to come back to Poole hospital and, so long as she could get the OK from the registrar at Southampton, Jake could be discharged straight home with me, not least because he was going insane being trapped in a bed all day. This would have been great if the registrar at Southampton could be bothered to return Dr King's repeated calls. He couldn't.
As the advocate of someone like Jake you sometimes have to make yourself a massive pain in the arse and this was one of those times. I arrived at the hospital at 3pm and announced, in my most friendly but definitely not to be trifled with voice, that I would need to see the registrar immediately as, having had the OK from Jake's Consultant, I was planning on taking him home that afternoon and I would really rather prefer to do it with their blessing. Ha ha ha, apparently that's the magic phrase to make the Dr appear. Not in person of course; like the undead, Drs at Southampton cannot be seen in daylight and can only communicate through their earthly underlings (the nursing staff). Anyway, approval was gained and there was much running around getting discharge papers printed and signed. The only wrinkle being the physio who wasn't initially happy to OK the discharge as Jake was still 'very unsteady and drifting to the right'; good work Sherlock, this is because he has ataxia and right hand side neglect which you'd have know if you'd just READ THE BLOODY NOTES.
So, finally sprung from Southampton and safely back with his much missed furry idiots, Jake carried on, oblivious that we were all holding our breath waiting to see what impact the shunt revision would have.
The road to recovery in brain injury land is never a smooth one and the next couple weeks saw Jake battle a stomach bug, infected wound site, ingrown toenail removal, a resurgence of the constant vomiting issue and the reality of what happened 20 months ago finally dawning on him. Worst of all, after 8 months seizure free, a full tonic clonic seizure last Tuesday.
And yet, in the midst of all this discomfort, illness, confusion and fear, my extraordinary husband has retained his sense of humour and, more excitingly, regained a level of recovery not seen since Christmas. It seems the shunt has been failing for some time! On top of that there are signs of even further improvements in his language and understanding, mobility and independence. Bloody brilliant.
Not wanting to take the wind out of anyone's sails, but it's important to manage expectations and it is worth pointing out that, although amazing, all these things are relative. Our Jake is still a very damaged man. He is profoundly dyspraxic, aphasic, ataxic and dysphagic as well as suffering from memory and executive functioning issues. That said, he never gives up and has already exceeded the expectations of every medical and rehab professional he has encountered and life is so much better than we were led to believe it would be.
So hope continues to lead us on it's merry dance; it's a good job we like dancing...ish.
Well, I'm afraid things didn't improve. If you possibly can, avoid Southampton Hospital. Seriously.
At no point after his operation did a Dr of any kind come to tell us how it had gone and what we should expect. Jake was finally moved to a medical ward in to a bed with someone elses name and dietary requirements above it until I arrived and pointed it out. He was then held captive on this ward, where no one had read his notes (again) for three days. This meant that, despite me telling them every time I came in and the sign I put above his bed spelling it out in capitals, they kept calling him by the wrong name that no one ever calls him (it's complicated but Jake is actually Jason). They alarmed his bed to stop him from getting up and walking about and then gave him anti-coagulant injections in his stomach every day because he was immobile; madness. And all this because they were fixed on sending him back to Poole 'rehab' rather than home as he was 'still very confused, aphasic and unsteady'...you know, those chronic conditions that are normal for Jake which they would have known if they'd just READ THE BLOODY NOTES.
I called the Poole brain injury registrar Dr King (who is lovely) first thing on Monday morning and agreed with her that there was no reason for Jake to come back to Poole hospital and, so long as she could get the OK from the registrar at Southampton, Jake could be discharged straight home with me, not least because he was going insane being trapped in a bed all day. This would have been great if the registrar at Southampton could be bothered to return Dr King's repeated calls. He couldn't.
As the advocate of someone like Jake you sometimes have to make yourself a massive pain in the arse and this was one of those times. I arrived at the hospital at 3pm and announced, in my most friendly but definitely not to be trifled with voice, that I would need to see the registrar immediately as, having had the OK from Jake's Consultant, I was planning on taking him home that afternoon and I would really rather prefer to do it with their blessing. Ha ha ha, apparently that's the magic phrase to make the Dr appear. Not in person of course; like the undead, Drs at Southampton cannot be seen in daylight and can only communicate through their earthly underlings (the nursing staff). Anyway, approval was gained and there was much running around getting discharge papers printed and signed. The only wrinkle being the physio who wasn't initially happy to OK the discharge as Jake was still 'very unsteady and drifting to the right'; good work Sherlock, this is because he has ataxia and right hand side neglect which you'd have know if you'd just READ THE BLOODY NOTES.
So, finally sprung from Southampton and safely back with his much missed furry idiots, Jake carried on, oblivious that we were all holding our breath waiting to see what impact the shunt revision would have.
The road to recovery in brain injury land is never a smooth one and the next couple weeks saw Jake battle a stomach bug, infected wound site, ingrown toenail removal, a resurgence of the constant vomiting issue and the reality of what happened 20 months ago finally dawning on him. Worst of all, after 8 months seizure free, a full tonic clonic seizure last Tuesday.
And yet, in the midst of all this discomfort, illness, confusion and fear, my extraordinary husband has retained his sense of humour and, more excitingly, regained a level of recovery not seen since Christmas. It seems the shunt has been failing for some time! On top of that there are signs of even further improvements in his language and understanding, mobility and independence. Bloody brilliant.
Not wanting to take the wind out of anyone's sails, but it's important to manage expectations and it is worth pointing out that, although amazing, all these things are relative. Our Jake is still a very damaged man. He is profoundly dyspraxic, aphasic, ataxic and dysphagic as well as suffering from memory and executive functioning issues. That said, he never gives up and has already exceeded the expectations of every medical and rehab professional he has encountered and life is so much better than we were led to believe it would be.
So hope continues to lead us on it's merry dance; it's a good job we like dancing...ish.
Friday, 31 May 2013
The fear
You know that moment when you've been trying to prise the lid off something and suddenly it pops off and the contents go everywhere? Well, that's what happened on Wednesday morning.
After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.
First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!
After literally weeks of banging on that things were 'not quite right' and sending countless increasingly 'direct' emails, we got a call from Jake's consultant at 9am to say "I've reviewed the latest CT scan with a Consultant Neuro Surgeon, this needs to be dealt with today, there is an ambulance on the way". Gulp.
First thought; good. Second thought; oh God, here we go again. Third thought; how the hell am I going to explain this to Jake through the fog of aphasia and hydrocephalus? Fourth thought; I should get out of this towel before the ambulance arrives!
Thankfully the ever calm and generally amazing Keeley (Jake's primary carer) was there and took us both in hand with her usual air of quiet competence and we arrived at the emergency admissions ward at Poole Hospital at 10:00am. Jake was now 'nil by mouth' and the registrar assured us that we would soon be transferred to Southampton Hospital for emergency Neuro surgery and we were looking at this all happening "in hours rather than days". All very scary...all very exciting. Getting the shunt fixed meant getting Jake back on track.
Another CT scan was quickly done and sent over to Southampton and then we waited...until 6pm when the ambulance finally arrived. On arrival we were admitted to the Neuro transitional unit and waited for Jake to be admitted and assessed.
At this point it is important to stress that I think the NHS is utterly amazing. The support, care, expertise, investment and understanding we have received over the last 19 months has been truly amazing.
Southampton, however, did not fill me with confidence. It took 90 minutes for someone to come and check on Jake who, as sister in law said, is an emergency admission and could have been dead for all they knew.
A 9pm we were finally seen by the registrar who was a very pleasant chap who seemed to know his stuff, which was all very comforting for the first ten minutes, up to the point when he said "has he had a brain injury before?", quickly followed by "what's his name?". He knew NOTHING about Jake's severe brain injury and clearly thought he was dealing with a straight forward case of organic hydrocephalus. Having put him right and filled him in on the last 19 months SIL and I did our best not to communicate our belief that he was as capable as a mummified slug and off he went to read the notes...yes, that's right, he hadn't read the notes.
Back he trotted with the news that Jake was now "first on tomorrow's emergency list" and Jake was finally allowed to eat and drink something at 9:45pm after 13 hours nil by mouth.
Meeting for breakfast in the hotel the next morning SIL and I were feeling positive that Jake would soon be in theatre and all would be well. I called the ward at 8:30am to see if he'd gone down yet (having learnt the hard way, SIL and I do our best to ignore the whole 'sitting outside of a theatre watching the minutes crawl by' scenario and had planned to get there after he had been moved to recovery). You can imagine my confusion when I was told that 'he's not on the emergency list anymore, they'll get to him today if they have time".
Hang on, how can he be rushed in as an emergency case with the consultant Neuro surgeon insisting it needed to be dealt with immediately and then suddenly no longer be that urgent despite worsening symptoms? This sounded VERY wrong to me, so out came the warrior wife armour and SIL and I planned our strategy for 'helping them to reconsider'. Cutting a long, distressing and often fraught story short, we got the consultants to communicate and we were back on track for surgery on Thursday.
Of course, during this time a very confused and frightened Jake was lying in a strange ward, not allowed to eat or drink for two days and not really understanding why he was here. He was amazing and coped unbelievably well, of course.
Finally, at 6pm yesterday, I held my Jake's hand as the anaesthetist sent him off to sleep and he was wheeled off into theatre. SIL and I then had the joy of what is absolutely the worst bit, the waiting. Much coffee and tea is consumed and much banal small talk is half heartedly made.
At 7:45pm he was taken to recovery and at 8:45pm we got to go and see him. He was very groggy and uncomfortable but seemed to know us, so we reluctantly headed back to the hotel to eat...and drink.
Emboldened by too much wine I broke my own rule and called the ward at 10pm, 'just to check'. What I hadn't expected to hear was "he's fine, sitting up in bed having a cup of coffee, would you like to speak to him?". Err...hell yes!
Gladiator Jake had done it again "is that my wife?...hello wife" said he, "bloody hell" said I!
So this morning we start again with hope going up and hopefully I'll be able to get he chorus of Lilly Allen's 'The Fear' out of my brain and replace it with something a little more appropriate, any suggestions?
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