bitter sweet progress

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

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.

Uno mas por favor

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! 

Sun, sea, sand and...

...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!

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.

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?

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?