I’m a bit worried as I feel as though my heart is locked away in a small box. Like a tiny one of those old packing chests they used to use in house moves. I’m crying but the tears ain’t reaching anymore. They feel meaningless.
It started at the funeral place yesterday afternoon. The room overlooked the London Road. While we discussed coffins, in a strangely quiet, cream coloured haven of sorts, and I watched the number 8, 9, 400, U1, 280, X90 and Oxford Tube buses drive past.
Time is passing slowly. It feels as though we’ve been living this half life forever now. No one has had a bath since last Wednesday. I’m not sure I ever will. We’re wandering around bumping into memories present in every inch of our house. The pain is indescribable. But our grief is disrupted by officialdom.
LB is now badged a SIRI. Jargon haunts him even after his death. Why the fucking crapshite do the NHS/Social Services use so much jargon???
A SIRI is a Serious Incident Requiring Investigation which may generate media interest. Eh? What about the poor buggars whose ‘serious incidents’ aren’t likely to generate media attention? I don’t understand what difference it should make to the NHS if the ‘serious incident’ may generate media attention or not. Does it mean they pay extra attention to their (internal) investigation? Is there less (or more) likely to be a cover up? Is a head honcho dashing to take their suit to the dry cleaners, ready to make some bland, meaningless rote statement on some steps somewhere? Is the Trust busily smartening up the outside of the unit in case it gets papped?
Well they are right about this terrible, devastating, happening generating interest. It has generated shock, horror, sadness and rage among so many people we’re overwhelmed. This collective feeling has, in turn, generated offers of support and hardcore advice and information. LB would be delighted that the legal team is kicking in at last.
Just not about filling the dishwasher, sadly.
Four days. Seems like a lifetime. Or a life sentence really. The horror and disbelief kind of recedes, as family and friends sit around, drinking cups of tea, recalling the funniest, funniest of stories about LB. How he proudly announced last summer “I have a girlfriend for every occasion; camping and funerals”. Or in answer to Will’s recent question about what he did in the unit overnight, said cheerfully “not much.. a bit of wanking.”
That there seem to be no end of stories underlines how remarkable he was, and how his way of being and doing cut through the bullshit of everyday life.
The grief returns pretty sharpish though. Partly fuelled by the many reminders around our house (a major downside to cluttering). Photos, drawings, odd toys, Mother’s Day gifts, school reports, odd socks, years of ‘pupil of the week’ certificates stuck to the side of the fridge. And that’s without going in his bedroom. My mum and sisters collected his things from the unit on Friday morning. A terrible, terrible job. It broke my heart to see his well worn copy of the Yellow Pages at the top of one of the boxes they brought back. He’d been reading this less than a week ago. Septic tanks and heavy haulage.
We’re devastated. Completely devastated.
And enraged. Enraged he died in the bath in hospital. How could this happen? We never stopped listening and checking on him in the bath at home. How can you possibly find a young man with epilepsy at a learning disability/mental health acute hospital dead in the bath?
And, almost worse, how could we, as a family, seriously talk about how we hoped he’d had a massive heart attack? The alternative so painful, it’s unimaginable. But of course we know it isn’t really. A recent Mencap report (a few years after the ‘Death by Indifference’ report) found that there are 1200 avoidable deaths of learning disabled people a year in the NHS.
What sort of fucking care is ‘care’ for learning disabled people?
And then there is another layer of rage/despair. The wheels of the ‘official investigation’ by the NHS Foundation Trust means that he – a young man who never got to kiss a girl, go out on his own or do a tour of the Oxford Bus Company – will continue to be discussed/dismissed/pored over and minuted in jargon filled, appalling, process driven documents. Bureaucracy obliterating humanity in a mechanistic, always meaningless, way.
Why is it that the NHS/social services never voluntarily stick their hand up and say “We got this wrong. We are so, so sorry about what’s happened. But boy, we are seriously going to make sure it never happens again. And we’ll let you know/involve you in doing this”.
Part of me wants to say leave the dude alone now. Stop stamping over our beautiful boy who was loving, generous, without guile and enjoyed a cracking set of interests. He never had a chance with the web of under-funded, under-valued, non-support he experienced most of his life.
Then I think he deserved so much better. As do his peers, who were at the school Summer Ball on Friday night while he was in the mortuary. Things have to change.
Went to the park across the road tonight with Tom, Rich and Bess. An older man was walking slowly across the grass with a middle aged man who was walking hesitantly, making unusual hand movements. Bess ran over to them and we started chatting.
The older man seemed delighted to talk. He chatted about Bess, Tom and football, and growing up in St Clements.
“And is this this your son?” I asked, smiling at the dude who was standing a little way away, grinning at the ground.
“Yes,” he replied. “He’s very shy.”
“We had a son who was a bit shy”, I said.
I made sounds at the John Radcliffe hospital yesterday I never expected to make. Or even knew I could make. Sounds of keening, howling, inconsolable, incomprehensible grief, sorrow, despair and darkness.
Our beautiful, hilarious, exceptional dude was found unconscious in the bath in the unit before a planned trip to the Oxford Bus Company. The psychiatrist from the unit who called me at work around 10am to say that LB had been taken to hospital, gave no steer he was pretty much dead. I asked her (as an anxiety induced after thought) if he was conscious when he left the unit in the ambulance. She said they’d cleared his airway but he hadn’t regained consciousness. She made no suggestion I should urgently go to the hospital or that I should go with someone. It was a care less call. Much like the ‘care’ he’d always experienced outside home and school.
I arrived at the hospital twenty or so minutes later, with a work colleague who (so, so kindly) insisted on coming with me. I was immediately faced with a LB has a ‘dead heart only kept alive by a ventilator’ story. This news generated my, to that point, unknown sounds.
I hugged him while he died.
Unspeakable horror.
Agonising pain.
The combination of work mate, A&E staff and my mate Mary, who works there, was outstanding as we gathered the kids and sat in the ‘relatives’ room. We will forever be grateful for their care and sensitive attention.
We are now in a space I can’t describe.
Tom hopes LB is hanging out with the old comedians he loved watching. Having a bit of banter. I can’t move beyond wondering how a hospital unit, with only four or five patients, who made such a fucking fuss about asking LB’s permission for us to visit on a daily basis, could let him die in the bath.
LB died this morning. In the bath. In the unit. He would be pleased the CID are involved.
LB went to the farm yesterday for the first time in weeks. He’s timetabled to go every Monday and Friday but has consistently refused. Even though he always enjoys it when he’s there and works hard.
Apparently he’s been interested in the decorators, carpet fitters and electricians who’ve been working at the unit for the last few weeks. Yesterday it was turn of the gardeners.
“You hear that sound LB?”, asked his support worker.
“Yes,” said LB.
“What is it?”
“Lawnmower.”
“No, it’s the sound of men at work.”
And that was it. Bowl of porridge (or two) and off to work. Beautifully done.
We passed the 100 day mark this week. 100 days. 100 days of incarceration (though not according to some involved in this story who insist the locked door isn’t stopping LB leaving the unit). Let’s park that detail for now. And the emotions associated with this experience.
Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.
Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.
Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.
Now there’s the rub. For the first time, we’re insisting on effective and appropriate support. This position makes me feel slightly heady, slightly hysterical, hugely enraged but mainly sad.
But hey. What about LB? How’s he doing?
Three things jump out this week.
1. He attended the ‘feelings’ group which was progress after the first meeting when he turned up, gave everyone the finger and left.
2. He’s asked me repeatedly this week if he’s mainstream now.
3. When I ring and they pass the phone to him, he has a nifty exchange with me – ‘Yeah, right’ ‘Yeah, cool, see you then.’ ‘Right, yes, cool, yeah’.
I’d take these three things as a sign that there is some shaking down in his mind of who he is, and what he wants.
C’mon social care (if you hold the power here). Let’s act on that and create him a space in which to live productively. And, while I’m at it, can I chuck back into the mix the feelings of siblings who are offered no support, and, if under 16, not allowed to visit their brother or sister on site?
It shouldn’t be like this.
I dipped back into Goffman’s ‘Relations in Public‘ this week, as a tasty little treat between Candy Crush lives. He writes in the preface; ‘Throughout the papers in this volume unsubstantiated assertions are made regarding the occurrence of certain social practices in certain times and among peoples of various kinds.’ Hilarious. The man is a legend.
I love his reflections on how we ‘co-mingle’ in public places. Mostly in an orderly fashion with our ‘use space’ commonly respected and reciprocated. He kicks off with some reflections around how we manage to walk around, often in crowds, without colliding into one another. And how what seems like a random activity – hundreds of people walking along Oxford Street, for example – is ordered and social. We constantly ‘scan’, ‘body check’, exchange ‘critical signs’ to signal a manoeuvre and engage in ‘near-simultaneous parallel adjustments’. We ‘step and slide’ through tacit agreement with others present making an often seamless display of togetherness. We could wrong foot people, or not play by these rules. We could engage in collisions and disruption but tend not to. Why?
The Goffmeister says the gain to be achieved doing this isn’t much, so trust is sustained.
The reason I’ve been revisiting this fantabulous book is because orderliness, manoeuvres and lack of collision are always visible in the photos I snap when I’m out. Love him.
mydaftlife 