Monday, 25 June 2012

Goodbye Boot Camp...hello rehab hotel

Hope goes up today as we embark on a new chapter in our brain injury journey; we have our wads of NHS cash (thank you Poole PCT), the bags are packed and we’re off!  I would describe myself as excited and hopeful.  Jake seems to be half pleased and half terrified, which is completely understandable.  He has been in an acute hospital setting now for 8 months and the prospect of moving to what I have sold to him as a ‘rehab hotel’ must be daunting.

The ‘Hotel’ is Glenside Manor in Salisbury where they have designed a tailored pathway for Jake starting in Nadder Ward, a neuro-behavioural treatment and rehabilitation unit where they are equipped to work with some of Jake’s more challenging issues, rather than trying to work around them (would it be bad of me to call it Madder Ward?).  The plan then is for him to ‘step down’ to Bourne Ward, a mutli-disciplinary rehab ward that is underpinned by a Cognitive Rehabilitation Therapy (CRT) Programme.  It all sounds very complicated so allow me to distill it for you; Jake’s inner toddler is currently in charge (his parents can confirm that this is not a good thing) and, together with his processing and cognitive deficits, this means he is literally unreasonable and refuses to play the therapy game.  The psychology led approach at Glenside aims to unlock all his pre-injury ‘stuff’ that has risen to the surface and is stopping him from making the most of his rehab journey.  The universal view is that Jake has enormous potential and could achieve a reasonably good recovery and positive future if only he would stop standing in his own way!  Classic bloke.

I have already had several emotional goodbye hugs from some of the nursing team who are phenomenal and today I am taking in a homemade thank you cake which looks like my inner toddler has made it.  We should be used to these farewells by now having already had several of them, but they are always bittersweet; we are delighted to be moving on to the next stage of our journey but we are also sad to be leaving our Boot Camp friends.  The last few weeks have been frustrating and unproductive, but for the first couple of months the team undoubtedly helped Jake to make extraordinary strides forward and any frustration is eclipsed by an overwhelming sense of gratitude.

I suspect they may be a little pleased to be rid of us as Jake has decided he can walk.  He can’t, of course, which leads to some hilarious / heart stoppingly terrifying moments when he launches himself up and forward.  Apparently on Monday the nursing team were in the middle of their daily, slightly rowdy 7 o’clock handover and Jake, whose room is just by the nurses’ station, propelled himself off the bed, careered to the door (about 2 meters), slammed the door shut and sort of staggered backwards onto the bed…I’m told the male nurse looking after him used some rather choice language as he sprinted to the door to check Jake hadn’t ended up on the floor.  Poor chap!

I hope they will also miss us a little as we shall certainly miss them.  As at every stage of our journey we have experienced patience, love, support, humour and friendship.  Let’s hope our new friends at Glenside Manor ‘Hotel’ continue this trend.  I’m sure you’ll hear about it if they don’t!

Thursday, 7 June 2012

Has anyone seen where I put my patience?

Morning all.

Enjoying the stunning British Summer weather? Spare a thought for my sister and her family who are camping.  I'm thinking they may be a bit damp.

A quick post to keep everyone up to date.  We are still patiently(ish) waiting to hear about the funding decision which has been delayed by the Jubilee weekend.  We should know next week and then, assuming there is a bed available at the chosen unit, we will be moving on very quickly.  Some good news; a third option has become available at a unit called Glenside which is a neurological rehab hospital in Salisbury with an excellent reputation and a specialist pathway for neuro behavioural challenges.  Perfect.  The Neuro Psychologist visited Jake yesterday and feels confident that they can help to unlock some of the behavioural challenges that are holding him back at the moment.  Glenside is also only an hour away which makes life easier in every way.  Lets hope we a) get the funding and b) Glenside is selected as the right place.

In the meantime we continue with home visits and Jake came home every day over the Jubilee weekend which was lovely and challenging in equal measure!  He is much more co-operative and open to engage at home, but he is still very damaged and soul and if patience is a virtue, I am truly a virtuous person!!

From the perspective of firsts it was a great weekend; he wheeled himself around the house properly for the first time (we really need to widen the doors!), he ate his dinner at the breakfast bar for the first time and he took himself off for a rest in our bed for the first time.  The taking himself off to bed is hilarious, because he would clearly like to spend all day there and I am refusing to let visitors go and talk to him when he is in bed as we are supposed to be encouraging him to be up and engaged more during the day.  This leads to many comical exchanges where Jake attempts to trick us into going to talk to him and I yell back that we can't hear him so he'll have to get up!

He's still being very uncooperative and aggressive with the Boot Camp team and it feels like we are all marking time until he is moved to the next stage of his journey.  Here's hoping it comes soon.