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.
Thursday 27 September 2012
Wednesday 19 September 2012
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!
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!
Sunday 16 September 2012
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!
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!
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.
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