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.

Delays, disappointment and decisions

Well, its’ been another eventful week, the key themes being; delays, disappointment and Big Decisions.

The delays are legal and of the kind that make you want to spit; ‘that woman’ didn’t bother to respond to the summons with a plea so, in their infinite wisdom, the magistrates decided to give her an extension to the 30^th April.  Thanks for that, oh no, please don’t worry about the victim and his family whose lives are on hold until this is resolved! 

Three things could happen now; she pleads guilty and gets her points and fine which means we can move forward with the civil case; she still doesn’t bother to plea which means they will ‘find in her absence’ (hopefully the same outcome as the first option); or she pleads not guilty and a further date is scheduled for a full hearing “sometime later in the year”.  It’s no real surprise that I’m going slightly bonkers, but more on that later.

The disappointment is to do with Jake’s home visits last weekend.  Saturday’s visit went well; the specialist taxi driver we have hooked up with is lovely and Sister in Law and Jake’s best friend Mike and his squeeze Danielle were there to support.  Jake was a bit overwhelmed at first, but seemed to settle really well and we had high hopes for his next visit home on Bank Holiday Monday.  Much of this hope centred around Jake’s new wheelchair which is a standard, self-propelling, light wheelchair as opposed to the huge attendant assisted armchair he has previously used.  I had visions of him happily wheeling himself around Korving Towers reacquainting himself with our home and all his stuff (which is daft in itself because he is much more likely to stay in one room as he gets very overawed by change, but I have a VERY active imagination).  Hope can be a bit of a bugger though and, literally just before he was hoisted into his wheelchair, Jake had his first seizure for over two months, a proper one. 

I have never had a seizure, but I am reliably informed that they are completely exhausting and when you put this together with the extreme fatigue Jake suffers as a result of his injury, you can imagine how wiped out he was.  Also take a moment to imagine how relieved I was that it had happened then and not in the taxi or at Korving Towers. All this is disappointing on two levels; one because we were all, especially Jake, looking forward to his visit (and boy did he let me know he thought I was somehow behind the cancellation!) and second because we really thought that his epilepsy was under control.  Ho hum.  He is fine now and due to visit home again this weekend so I am relying on hope to cut us some slack.

All this, on top of all the crap I reported in last week’s blog has led me to having ‘a bit of a wobble’ and has compelled me to make a Big Decision. 

Currently my life is a frantic jumble of priorities; I work 5 hours a day, but it’s not one of those jobs where you can just switch off when you finish; I spend as much time as possible at the hospital supporting Jake’s rehab, but all too often am not available to be in therapy sessions; I am neglecting friends and family except those who physically come to me (even then I keep double booking and forgetting commitments); and I am most definitely not on top of things at Korving Towers, which is a bit like a B&B most weekends…only with friends as guests and added wine.  Add to this the anxiety and stress related to having your whole life and future upended and I am reaching critical mass!  Fundamentally I am trying to do too much and therefore doing none of it well. So I have decided I need to take an unpaid sabbatical from work and fortunately I work for a massively supportive organisation who are happy to facilitate this.  From the 1^st June I will be able to completely focus on my Jake and me; a decision which has made me feel almost human again.

At this point I would like to pre-empt the inevitable clever comments about how this spookily and conveniently coincides with the start of summer.  You’re right, it does.

Break out the emergency chocolate

You know when you've been looking forward to a film for ages, read the glowing reviews, heard from friends that it's amazing and finally get round to seeing it only to discover it’s a dud? Well that's how I feel about this week.

This week promised so much; initial court decision and Jake's first home visit both offering much hope.

Don't panic, there is no actual bad news, just a lack of good news and a truly bobbins conversation.

Still no news from the court team. Apparently it can take four days for them to upload the outcome on 'the system' (computer says no) and so, despite either a penalty or court date now decided, we are none the wiser. This holds everything up and it starts to feel like some sort of deliberate torture.

With regards to Jake's visit; he was due to be picked up from the hospital at 2:30pm and be taken back at 3:45pm. This would mean approximately 1 hour at home. Of course the taxi didn't turn up until nearly 3pm, so we only had 35 minutes which made it feel very rushed and unsatisfactory as, due to the nature of his injury, Jake is very easily overwhelmed which makes him withdrawn and sleepy. Great.

The taxi and Occupational Therapist went off at 3:45pm as billed, leaving Jake's key worker behind so we could talk about the practical stuff needed to get Jake home more regularly and for longer periods. She chose this moment to share her widely pessimistic view of Jake's potential recovery (he'll never do this, that and the other) and fun things like the fact my beautiful house probably won’t be adequate for Jake, something that is normally done in a balanced conversation with the whole rehab team at a formal review meeting, led by the consultant and when I have had time to prepare and usually have Sister in Law on hand to support. She then left me. On my own.

Yes, I fell apart (I've got eczema under my right eye from crying so much - attractive). No, it won't finish me off. Yes, I am now embracing that helpful emotion, anger. No, I'm not planning on actually hurting anyone...yet.

So, it is Wednesday morning and this week has already failed to live up to expectations. I have been about as effective as a teapot from a work perspective today and am sincerely hoping that tomorrow brings better news and I will start again then.

Fortunately Jake's Mum sent chocolate, so it's not all bad.