...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.
Nos vemos pronto perdedores!
Sunday, 16 September 2012
Monday, 10 September 2012
This game sucks
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.
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.
Wednesday, 29 August 2012
desperately seeking motivation
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?
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?
Sunday, 5 August 2012
Noughts and bollocks
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!
He's pretty amazing, isn't he?
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!
He's pretty amazing, isn't he?
Friday, 20 July 2012
Home sweet home?
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
had.
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!
Friday, 6 July 2012
Be grateful I kept it brief
I know that some of you find this kind of thing pretty nauseating, so I'll try to keep it brief, but I've been giving quite a lot of thought recently to gratitude.
Let me explain. Tonight I was thinking about how downright bizarre life can be. Jake has lost many things, some forever and some we hope just for now. He's lost memories, time, his radiography career, language, many cognitive abilities and the chance to buy me an enormous present last Christmas (really hoping this one is temporary). But, and it's a big but (I like big buts and I cannot lie), he has also gained in some unexpected ways; he has gained time as well as lost it as he will have time in the future to really decide what he wants from his new, different world. He has also gained from some of the other losses; he has lost the need to worry whether his shorts match his t-shirt, he no longer gets embarrassed in front of new people, he says what he feels without worrying how he'll be perceived and when he smiles or laughs it is completely pure, genuine and without agenda.
I suppose it has something to do with the natural balance of things that in wishing and hoping he will recover some of the good stuff, we are inevitably inviting back some of the other. It did make me think about being grateful though, whatever the situation.
So, here it is; today, the 6th July, I Mrs K am grateful for:
Let me explain. Tonight I was thinking about how downright bizarre life can be. Jake has lost many things, some forever and some we hope just for now. He's lost memories, time, his radiography career, language, many cognitive abilities and the chance to buy me an enormous present last Christmas (really hoping this one is temporary). But, and it's a big but (I like big buts and I cannot lie), he has also gained in some unexpected ways; he has gained time as well as lost it as he will have time in the future to really decide what he wants from his new, different world. He has also gained from some of the other losses; he has lost the need to worry whether his shorts match his t-shirt, he no longer gets embarrassed in front of new people, he says what he feels without worrying how he'll be perceived and when he smiles or laughs it is completely pure, genuine and without agenda.
I suppose it has something to do with the natural balance of things that in wishing and hoping he will recover some of the good stuff, we are inevitably inviting back some of the other. It did make me think about being grateful though, whatever the situation.
So, here it is; today, the 6th July, I Mrs K am grateful for:
· Jake, clearly
· Our idiot cat (just don't tell him or he'll want more food)
· Our beautiful home in Poole and its soothing garden
· My in-laws who contradict all the stereotypes and are lovely
· My Sister in Law and the friendship we have found - you rock, Hats
· Our friends who have steadfastly supported us (especially A&F and M&D)
· My family who have wrapped me in their love and soaked me in cider, gin, rum, wine etc…
· My renewed friendship with my sister and all the walking, shopping, gyming and gossiping we do
· The NHS; the Yanks are mad, it's amazing and we'd have been in deep doo doo without it
· Social media for keeping me connected despite living in a brain injury bubble for 8 months
· My employers and colleagues for being understanding, supportive and flexible
· CSI; there's so much of you on I never have to listen to my thoughts if I don't want to
· Radio 2; see above
· My neighbours who are lovely and didn't even get to know us before they were called upon in a crisis
· Team Korving, all of them (solicitors, case managers, police, Drs, nurses, therapists, care assistants, surgeons, porters, ward clerks, etc...)
· Sebastian, Jake's regular taxi driver who never treats Jake as though he’s different and is patient, good natured and supportive without exception
· My local Chinese takeaway
· Maltesers
· The Higgs field, because without it nothing would matter (geddit?)
There are loads more, but I can hear an old colleague (you know who you are) making pretend vomit noises all the way from Weybridge, so I'll stop. Oh, apart from to say I am grateful that you're reading this...
…hello, is there anybody there?
Wednesday, 4 July 2012
Is that you Worzel?
Having really rather let me down last year, the Universe has clearly decided to cut me some slack and look after me a bit more in 2012. This has led to my being genuinely happy for the first time in 8 months. For those that know me well this will make sense and you will be remembering a generally giddy individual with an appalling sense of humour and a tendency to speak before thinking (self awareness, it's a beautiful thing). It is however confusing for those that didn't meet pre-accident Charlie as it must seem like I've done a Worzel Gummidge and changed my head! (If you don't know who Worzel Gummidge is then I make no apology; it's your own fault for being sickeningly young).
Anyways up, shall I stop prevaricating and cut to the chase? Jake is now safely ensconced in the Hotel Glenside and it is safe to say that after just 10 days the difference is tangible and unbelievably exciting. He has initially been admitted to a ward which focuses on modifying challenging behaviour and to Jake's loved ones this was a tough reality, but an understandable one; he's always been such a considerate, gentle man and seeing him communicate his frustration in such an uncontrolled way is completely alien and often distressing. The 24 weeks funding we have been fortunate to secure is sufficient to enable Jake to remain on this secure ward long term if necessary and we were all starting to come to terms with this as a real possibility. Apparently not! In a meeting with Andrew the Ward Manager yesterday I was told that Jake simply doesn't need to be there; his behaviour is completely appropriate for this stage of his recovery and the challenges he is facing and they will therefore be transferring him to the general rehab pathway as soon as a bed is available. Andrew added that Jake is far too nice for them and the staff keep being thrown by his ability to reflect and apologise and he doesn't want them to get too used to this; hurrah!
It may take several weeks for a bed to become available on the Bourne rehab ward, but the team working with him now will work with the Bourne team to ensure that they are incorporating the Cognitive Rehabilitation Therapy (CRT) approach that underpins Glenside rehab treatment. (CRT is very different to CBT and there is a good description of how it works here: http://www.societyforcognitiverehab.org/patient-family-resources/what-is-cognitive-rehab.php).
It has also been brought home to me by the Glenside team this week what a miracle Jake is. He has always been my miracle as I never believed I would be loved by such an extraordinary person; it seems that he is also a medical miracle as the severity and location (left hemisphere) of Jake's injuries mean that he should not have achieved even a fraction of the recovery he has already made and we are still at the early stages of his rehab journey. That man rocks!
The final piece of my happiness puzzle this week has been a call that I had with the CEO of Blue Sky. If you know me well you will know that I love that company as much now as I ever have in the 12 years I have been lucky enough to work there. I was beginning to think that I may not be able to continue to work with them due to the level of flexibility I will need to fulfil my priority role as Team Leader of Project Jake's Joy. Not so; CEO (which now stands for Chief Excellent Officer) called to discuss the perfect role which will enable me to stay part of the Blue Sky family, maintain the flexibility I need to support Jake and do the thing I love most; writing! Still t's too cross and i's to dot, but I should be starting back on the 1st October. Amazing!
So all in all, hope continues to go up. Architects are coming on the 10th to complete a survey of our home so they can make recommendations as to how Korving Towers will need to be developed to meet Jake's needs and my beautiful man will be coming home for his first overnight visit on the 14th (which also happens to be my Birthday; coincidence? I think not!), so stay tuned for more news on the direction of our hope.
Anyways up, shall I stop prevaricating and cut to the chase? Jake is now safely ensconced in the Hotel Glenside and it is safe to say that after just 10 days the difference is tangible and unbelievably exciting. He has initially been admitted to a ward which focuses on modifying challenging behaviour and to Jake's loved ones this was a tough reality, but an understandable one; he's always been such a considerate, gentle man and seeing him communicate his frustration in such an uncontrolled way is completely alien and often distressing. The 24 weeks funding we have been fortunate to secure is sufficient to enable Jake to remain on this secure ward long term if necessary and we were all starting to come to terms with this as a real possibility. Apparently not! In a meeting with Andrew the Ward Manager yesterday I was told that Jake simply doesn't need to be there; his behaviour is completely appropriate for this stage of his recovery and the challenges he is facing and they will therefore be transferring him to the general rehab pathway as soon as a bed is available. Andrew added that Jake is far too nice for them and the staff keep being thrown by his ability to reflect and apologise and he doesn't want them to get too used to this; hurrah!
It may take several weeks for a bed to become available on the Bourne rehab ward, but the team working with him now will work with the Bourne team to ensure that they are incorporating the Cognitive Rehabilitation Therapy (CRT) approach that underpins Glenside rehab treatment. (CRT is very different to CBT and there is a good description of how it works here: http://www.societyforcognitiverehab.org/patient-family-resources/what-is-cognitive-rehab.php).
It has also been brought home to me by the Glenside team this week what a miracle Jake is. He has always been my miracle as I never believed I would be loved by such an extraordinary person; it seems that he is also a medical miracle as the severity and location (left hemisphere) of Jake's injuries mean that he should not have achieved even a fraction of the recovery he has already made and we are still at the early stages of his rehab journey. That man rocks!
The final piece of my happiness puzzle this week has been a call that I had with the CEO of Blue Sky. If you know me well you will know that I love that company as much now as I ever have in the 12 years I have been lucky enough to work there. I was beginning to think that I may not be able to continue to work with them due to the level of flexibility I will need to fulfil my priority role as Team Leader of Project Jake's Joy. Not so; CEO (which now stands for Chief Excellent Officer) called to discuss the perfect role which will enable me to stay part of the Blue Sky family, maintain the flexibility I need to support Jake and do the thing I love most; writing! Still t's too cross and i's to dot, but I should be starting back on the 1st October. Amazing!
So all in all, hope continues to go up. Architects are coming on the 10th to complete a survey of our home so they can make recommendations as to how Korving Towers will need to be developed to meet Jake's needs and my beautiful man will be coming home for his first overnight visit on the 14th (which also happens to be my Birthday; coincidence? I think not!), so stay tuned for more news on the direction of our hope.
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