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!

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.

Back on the rollercoaster

I have just realised that it’s been over 2 weeks since my last post.  Sorry about that, I shall try to make up for this by making this one a meaty one.

The last fortnight has been characterised by some amazing highs, more interminable waiting and some frankly shitty lows.

We are still waiting to hear about the named patient programme funding for his next move.  The options are; we don’t get the funding which would mean going back to the drawing board (the general consensus is that this won’t happen); or we get the funding and then the decision will be which rehab unit we are given.  The choices are a general neuro unit in Boscombe and a brain injury rehab unit in Exeter. The best place for Jake is undoubtedly the Woodmill in Exeter as it is much more specialised and better equipped to deal with the behavioural challenges that are emerging, but we would be happy for him to gain funding for either of these units; he is incredibly unhappy in the acute hospital setting which is contributing to his deteriorating behaviour.

Talking of which, mardy Jake has pretty much taken over.  I wasn’t sure whether to share the extent of this, but if you are reading this blog I am going to assume that you care about Jake and me and therefore you will see this as part of our journey and not judge based on this one stage.  Jake has started to come home mid-week for an afternoon to try and alleviate how unhappy he is at the moment.  These visits go well until it is time to go home and I am gutted to say that today I have bruised arms where Jake’s anger and frustration bubbled over.  If this had happened before the accident I would, quite frankly, have kicked him out.  But it isn’t my Jake doing this, it is his injured brain.  I’ll be honest with you, I feel completely inept and helpless to deal with this, which for someone who is used to always finding a way around problems is completely defeating.  I tell him how angry and upset it makes me and he usually says sorry afterwards and seems genuine; yesterday he was very upset about what he’d done so I told him that it wasn’t him it was his injury and he replied ‘no…no excuses’, so he clearly understands on some level.   

The main problem with this change in behaviour is that it has stopped him from co-operating in his rehab.  Basically he is taking control back by refusing.  Refusing to join in, refusing to try, refusing to get up, refusing to eat.  This is both frightening and unbelievably sad because everyone agrees that his potential is huge, but if he doesn’t make the most of these opportunities now it will impact on the quality of the rest of our lives.  The next move will be crucial for Jake’s progress and in two weeks we should have the decision on the funding; please pray / wish / hope that we get the right decision.

It’s not all bad news though and the amazing high was Jake’s Birthday BBQ.  If we are friends on Facebook you will already know this, but it was a perfect day which culminated in a truly magical moment…and me sobbing like a child!

The sun came out, our friends travelled from far and wide and Jake was in excellent form.  He was chatting away, coped really well with the number of people present and even had lunch at home for the first time.  He blew out his candles and was clearly having a wonderful time when he started to get agitated.  Normally this means that he is overstimulated or tired so I attempted to encourage him back into the house, but it would seem that this time the agitation related to a desire to be on the patio where his best friend Mike was fulfilling the role of BBQ maestro.  We were sat on our deck which is almost the full length of the back of the house, leads straight out from the lounge and has three steps down to the patio and the rest of the garden (sounds much grander than it is!).  In response to my trying to wheel him backwards into the lounge Jake grabbed the table we were sat around and started to pull himself forward, towards the rail that surrounds the deck and, more worryingly, the steps!  He reached the railing and started to lift himself out of his chair and as usual, his amazing friends Mike and Andy were on hand to help and rushed forward to support him on each side.  He gripped the rail and STARTED WALKING towards the steps.  Yes, I did say walking.  Now, keep your pants on, he was being held upright by the chaps and he would in no way be able to do this without that (his right foot and ankle are still a real problem), but the determination on his face was exhilarating.  Oh, and then he went down the stairs!  I wailed and sobbed like I was in a particularly bad amateur dramatics production of a schmaltzy melodrama, though I know I was not alone in shedding a few tears; apparently dark sunglasses can be very useful!

He then sat on a chair on the patio and looked very pleased with himself, which let’s face it, is fair enough!

He went back to the hospital without any drama and I and everyone else at Korving Towers got satisfyingly drunk (again special mention goes to Andy and Mike who were both spectacularly squiffy!).

I will try and be more constant and prompt with future blogs, in the meantime pleas keep doing what you do to send your hope to us.  It makes all the difference.

Dr Jekyll & Mr Hyde

OK people, enough already, I know I haven't written a blog for a while!

There is no nefarious reason for this; just a very busy couple of weeks. This is weird if you think about it as I am now on sabbatical and should therefore have more time. I have concluded that now that I am not sitting in front of a laptop for 5 hours a day I am less likely to have the blog mood take me. I promise to address this and return to weekly updates.

"Hey Charlie, what have you been up to?" I hear you ask (maybe). Well, there's been gardening, walking, shopping (Ikea rocks!), mass cupboard clear outs, oiling the deck, meeting up with work friends, laptop purchasing and set up, entertaining visitors...oh yes, and supporting Jake, which is what you really want to know about.

He's having a bit of a plateau at the moment, so there isn't a great deal of new stuff to share. This is perfectly normal and reflects the expected rehabilitation journey of short periods of improvement followed by longer periods of consolidation. We've been very fortunate that the last two months have seen steady and significant improvement, so this more static period has been overdue.

The good news is that Jake is now getting all of his nutrition through feeding himself a pureed and thickened liquid diet instead of through the tube in his stomach. He is not overly impressed that he can't have water or normal food yet (his swallow, although strong, is slow to initiate so water goes down the wrong way and more solid food could get stuck) and on Friday he looked at the other patients' normal food and announced that he wanted 'that version'. Bless!

The mixed news is that we have entered a period where Jake is beginning have more insight into what is happening to him, but without the ability to really understand it. On the one hand this is great because it indicates that he could go on to gain full insight and understanding. On the other hand we now have a properly mardy Jake, whose confusion and frustration often tip over into anger and aggression. Again, this is apparently a normal part of the journey and we have been warned that it is likely to get worse before it gets better. They do at this stage though believe that it will get better; I won't lie to you, it's bloody awful so this is a relief. I have to work very hard to remember that the person lashing out at me and telling me to f*** off is not my Jake, it is the Jake with a severe brain injury. My Jake is still in there, he is just overwhelmed by the injury at the moment. Sadly, this change in behaviour could put paid to the plans for hydrotherapy and the exercise bike as this may make it unsafe. Hey ho.

Mardy Jake is fortunately balanced out by windows of my lovely Jake; my husband and best friend is still there and in the rare and precious moments where he breaks through it is magical. Yesterday I decided that, rather than having someone there to help with the home visit, I would ask my lovely neighbour to be around and available if I needed her. This meant that Jake and I were truly and completely alone for the first time in six and a half months and boy what a difference it made. Jake was the most relaxed and contented I think I have EVER seen him, including pre-accident. We transferred him into his armchair, put his feet up on the foot stool, put a blanket over his legs and arranged a pillow behind his head...and then he sighed, smiled, reached out for my hand and said "that's better". Most of the time Jake's dysphasia makes it almost impossible to decipher what he is trying to communicate; not this time! Moments like this make me feel that we are reaching the stage where I can actually allow myself to believe that I still have a Jake...I STILL HAVE A JAKE!!!!!!!

The paperwork is being prepared for the funding request for our next move and, having spoken to the rehab lead at one of the units we may move to, I feel ever more positive about the future and what this move could mean for Jake. I don't doubt that hope will go down again over the next months and years, but the general trend is most definitely that hope goes up.

The school of life

Be thankful I didn't write this post on Friday; it would have been very whiney. Actually, be grateful I didn't write it Saturday either as it would have been very winey (and cidery). As for Sunday, well don't start me...

I know, I know, get on with the update on Friday's meeting.

We all crammed together in the stuffy therapy room; Sister in Law, Pippa the Case Manager and me from Team Korving and the clinicians and therapists from the Boot Camp team. Everyone seemed very jolly and, as you'll know from last week's post, Team Korving was feeling pretty positive. Right up until the Speech and Language Therapist said "Jake has pretty much every SALT problem possible". From that point on it got worse; despite undoubtedly making progress, Jake's issues are so complex that the intensive, fast stream rehab environment of Boot Camp is often creating more problems for our boy than opportunities.

This means facing the one thing we had been hoping to avoid; slow stream rehab. Now at this point I find myself having a little chat with me (yes, I'm talking to myself). Why do the words 'slow stream rehab' fill me with such dread? I think it's because it is further evidence that Jake is not going to make a miraculous recovery; a fact that my head had already come to terms with, but my heart has been fighting. It also means that at the 6 month stage Jake still faces a very, very long and uncertain rehab journey ahead and our future will continue to be frozen in stasis.

On the other hand, what this means is that Jake will be in an environment which feels less like an acute hospital and more like a home, with less structure, less uniforms and less pressure. His rehab will be 'nurse led' rather than 'therapy led', which essentially means Jake will develop through everyday routine and environmental cues, rather than short, highly structured sessions. He will still be supported by Speech and Language, Occupational and Physio therapists, but at a pace that is better suited to Jake's capability. More school of life than Boot Camp.

Over the next few weeks the Boot Camp team will adapt the way they work with Jake to reflect this nurse led approach and maximise the time they have left with him, focussing this time on helping him to nail the stuff he has started to develop but is still doing inconsistently, rather than introducing any more challenge. For example, they are going to start working with him in the hydrotherapy pool and on an exercise bike to help him to finally achieve a stand (I will ball like a baby when this happens of course). Jake always loved cycling and swimming so this is fabulous.

During this time they will also be focussed on really getting to grips with what is driving Jake's challenges and progress (i.e. how much is won't versus can't), so that when they apply for the funding for his next move they are recommending the right unit with the right emphasis. This means that in the next few weeks I will learn whether we will be staying in Dorset...or moving to Devon!!! Never a dull day in rehab land.

Reading that back it feels much more like good news than it did on Friday, so I am glad I didn't burden you with my self pity then! Instead I had a lovely weekend with Lisa, Bev and Fiona, which is noteworthy for the 5 hour hike, lovely food, free flowing alcohol and a deeply embarrassing visit to hospital for me on the Sunday. Ha - that's piqued your interest hasn't it...I'm not telling, so there!

Today is my last day working before my sabbatical begins, so you can expect more frequent updates. I'll let you decide if that’s a good thing or not.

A Very Big Day

Would you believe that yesterday we reached the 6 month mark? 183 days since Jake set off to work on his bike and our lives changed forever.

Sometimes it feels like just a few weeks and sometimes it feels like years. So much has happened and yet so little has changed in that time it's a bit like being Dr Who's assistant...it certainly feels pretty alien (sorry about that).

Today though the world feels like its shifting and that shift feels good.

After 2 trips to intensive care, 12 hours of emergency surgery, severe hydrocephalus, 2 bouts of sepsis, pneumonia, 4 different brain injuries, 12 units of blood, dyspraxia, dysphasia and the input of a small army of healthcare heroes we have reached what Sister in Law would describe as A Very Big Day.

Today is the Multi-Disciplinary Team Review Meeting at the end of Jake's first 6 week term in rehab. Today is when we hear how Jake is doing and what the plan for the next 6 weeks is. Today I am feeling a little more than cautiously optimistic.

Why? Because Jake is improving at a rate that no-one could have predicted. Now hang on, hold your horses. My beautiful man is still a very damaged soul and realistically we are not looking at the Damascus type recoveries you see on Channel 5 'documentaries'. What we are looking at though is real hope that Jake will have a life that offers independence, self-respect and joy. Sure, he will also have frustration, disappointment and challenges that will feel like up-hill skiing... but then we all have that to a degree, right?

It's that mule like grit that has always been a feature of Jake's personality (sometimes a quality and sometimes really irritating if you're his wife), which continues to drive him forward. He has found his voice, if not always the right words; although it's not that pretty or safe, he can transfer himself from wheelchair to bed; and he is now regularly drinking thickened fluids and eating custard. Strawberry and Toffee custards being the current favourites.

We have a long way to go and he is still doubly incontinent, getting the majority of his nutrition through the tube in his stomach, very confused and incredibly limited by dyspraxia and the devastating fatigue brain injury survivors experience, but hope does seem to be on the way up.

So, we have high hopes for today's meeting, particularly as his keyworker declared the other day 'it'll be a nice meeting because he is doing so well'. Phew.

I promise to update you on the meeting soon, but it won't be for a few days as I am off on a girl's weekend away as soon as the meeting ends. You cannot imagine how exciting that is!

The secret

Shall I let you in on a little secret? They're true; all those clichéd things you hear people say in moments of terror and catastrophe, they're all, in that moment, completely true.

"It felt like being punched in the gut...having my heart ripped out"
"It was the worst moment of my life"
"If I can just get through today..."
"I'd give anything to turn back time" (thank you Cher)
"It felt like a dream"
"I'd swap places with you in a heartbeat"
"How will I go on?"
"This can't be happening to me...there's been some sort of mistake"
"I'll never do anything bad again if you'll just make this ok"
"You've got to laugh, or you'd go mad"
"I love you more than my own life"
"Please don't die today"

Yesterday my young niece briefly went missing. She was fine and having a lovely time being given juice and a biscuit by an elderly neighbour, but when I read about it on my sister's FB page (I know, I'm a bad person and I'm neglecting everyone) and thought about the agonising terror she must have felt, the clichés she must of thought and said and how long that 30 minutes must have seemed, it really made me think about my own experience of the last 6 months and what these clichés, which I assure you everyone thinks / feels / says at these times and are all completely true, say about us.

And do you know what I think they say? I think they are a proof of how adaptable and extraordinary we are when we need to be. I think they say and show how resilient the human spirit is, how strong we can be when we don't think we can go on any further and how, when we truly love, we love fiercely and without boundaries.

So this is what I have learned about these clichés and it's not really a secret, it's just that not everybody discovers their truth. I'm very glad about that.

Have a lovely terror / catastrophe free week.