Some mornings I walk along to the station next to where I work to buy some lunch. And photograph this space. I love the light, the patterns and what people are doing here. Spectacularly compelling. Well for me, anyway. But then I bloody love railway stations.
Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.
“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.
“No, thank you,” he said to the staff member relaying the question.
“Can you ask him if he wants a t-shirt or a dvd, or anything?”
The answer was “DVD please.”
Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.
There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.
From yesterday. Bit-post. Unfinished through lack of words:
LB attacked a staff member at dinner time tonight. Unexpectedly. For no apparent reason. After some careful but excessive sauce action (tomato and brown) on his plate. This lead to restraint, more restraint and medication. The situation was explained to me carefully in detail when I turned up an hour or so later.
“Er, can you claim for your shirt?” I asked his key nurse, inanely, after my other questions were answered (but left unanswered because there aren’t answers).
There are also no words really to make any sense of this, without falling back on jargon and social care speak.
I saw LB briefly after the debrief (and ripped shirt). He was in his room. I was armed with an alarm. He didn’t say much, just muttered really. I rang later that evening to see how he was, and the support worker (love her) went upstairs to check on him.
“LB, your mum’s on the phone. She just wants to know that you’re ok.”
“Yes.”
“Can I get you a drink or anything?”
“Yes.”
“What would you like?”
“Blackcurrant.”
No buses across Magdalene Bridge this morning as it was closed to traffic for May Day celebrations. So it was a beautiful walk from St Clements, up the High Street. Past revellers on their way home.
A rare ‘Who will buy?’ morning.
The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).
Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.
Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.
I’m getting pretty naffed off with this choice charade as you can probably tell.
Anyway. Back to yesterday evening. LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.
“Do you like it here, LB?” Asked Rich.
“Not really, no”, he replied, without looking up.
Carfax was a lively old space this morning. Sunshine, laughter, chatter and then a loud shout; “Oi! Stop eating that bubble gum!” The chunky hound under scrutiny assumed a “Who me?” expression. Soaking up the sunshine.
Some photos from today’s outing. A museum full of buses, brilliant colours and an amazing selection of mannequins. Overall; a bit spooky, very shiny and more than a little nerdy.
Day 40: The day we took LB to the bus museum
Got a call from the Unit yesterday asking if we wanted to take LB to the nearby bus museum that he loves. TAKE HIM?? Pick him up and take him ourselves?? That’s a ‘Y.E.S. We’d love to‘ kind of answer. It wasn’t open yesterday, and he declined our offer to take him somewhere else instead, but today Rich, Tom, Owen and I scooted round, picked him up and headed for the museum. It was great. The museum’s very quirky with a lot of very shiny old buses. We sat in various buses and coaches, chatting, remembering visits to museums and holidays from years ago. The outing was rounded off with sausage rolls and ice-creams in the cafe. Fun and fab.
“By the way, Margaret Thatcher died”, said Tom, as we pulled up back at the Unit.
“Why?” asked LB.
I’ll say it again. I just don’t get the workings of the Mental Capacity Act in practice. It just seems obfuscation* gone out for a night on the tequila to me. Out of necessity. I kind of understand the thinking behind direct payments (DP) though. Enabling/empowering people to buy in appropriate support/assistance (without having to rely on local authority provided support that can be constraining/limiting/inappropriate and sometimes patronising).
The early signs for me that DP were a bit flaky appeared at a series of meetings with some colleagues a year or so ago, in which an anecdote circulated involving a someone who chose to use his/her DP on Reiki sessions. This caused raised eyebrows. I didn’t understand why. If the Reiki made a difference to that person’s life, what was the problem? So what if there’s no evidence base to support the use of Reiki? It was probably more, or at least as, effective as a ‘turn in’ service involving a 10 minute visit from a carer at 6pm to get someone ready for bed. When they weren’t ready for bed.
Of course, some sharpish regular blog readers will be hopping up and down by now, hands up in the air to interject; BUT THAT’S WHAT LB’S DOING IN CHOOSING NOT TO GO TO THE FARM!! Erm.. No. Not exactly. Let’s not drag LB’s choice-making into this particular discussion for now, eh?
So. DP. A good thing. In principle. If people are allowed (or able) to buy in the support/assistance/services they need. And there lies the problem.
We chose to have direct payments, I don’t know how far back. It was such tiny amounts at first, it covered a session at after school club each week for a couple of years. And then when LB turned 18, it increased to just about cover about 5 after school club sessions a week. At almost the same time, things deteriorated to the point that he could no longer go to after school club.
Cripes. What to do? Pay for an assistant to cover the time instead using DP? Yep. Way to go. This was our November time thinking. But the aggressive behaviour increased, inversely affecting the (small) pool of potential ‘assistants’/assistance we could draw on. On an almost weekly basis we crossed potential and actual past carers off a tiny list of possible support. This was sad in itself given some were young people who’d known LB since he was a pup.
The Christmas “CRISIS” and events of the weeks after left an empty list. At the same time, the Care Manager increased the amount of DP paid into the ghost account. Within an impressively quick turnaround.
Ironically, while the original intention, for us, to plump for direct payments, was to be able to organise everyday ‘ordinary’ support for LB (ie. support not drenched in learning logs, private care provider-ville, and agency crap), his ‘decline’ meant that all we could hope to arrange was the ‘official’ type care, and that takes time to put in place. One of several care providers I contacted during this period, eventually replied weeks after my original email to say;
I replied to say that LB had actually been sectioned in the interim and she sent a reply about how advertising for the right person might take time and did I know when we would want the support to commence. No words. As usual.
This is where the problem lies. In Social Care Towers, it must have appeared that our particular case (one of many) was under control. A wedgey of money had been flung at it. In practice, Rich and I were cobbling together working at home, rearranging/cancelling meetings and making do. This is a privileged position which we both recognise. But not without costs and risks. And limits.
What I’ve learned is; throwing money, in the form of direct payments, at a ‘problem’, is not a solution. Money doesn’t equate to ‘support’. Money is only ‘money’ when there’s something it can be exchanged for. And really that something should be meaningful, effective and consistent. Direct payments shouldn’t equate to a ‘get out’/ ‘ignore’ clause for effective social care provision and attention.
*Gotta ‘fess up to googling the spelling of this.. it basically means (deliberately?) making understanding difficult.
Day 37: The day that Tom and LB get to meet in the local Burger King for tea.
Tom and I got there first, after a speedy dive into Tesco. Tom wanted to get LB a DVD or magazine because it was their first meeting since this all kicked off. He chose him some undercover cop comedy film I’d never heard of. And I grabbed a big box of cornflakes on special offer as we’d run out of cereal.
We sat at a table by the window, scanning the car park, half watching the families coming in and out. Chatting about the Suarez 10 match ban. It was odd. Waiting for LB to turn up. We had a bit of a chuckle thinking the staff would wonder what we were doing in a fast food restaurant, not ordering anything.
It was also weird wondering what it must look like to anyone there (who noticed) seeing a car pull up in the car park, LB get out and join us, and the driver going back to wait in the car. Like an inside out version of prisoner visiting hours. Or some court supervised visitation. Being in a familiar setting, but in a context in which the parameters are radically altered, is very strange. At one level we were hanging out like we’ve done a million times before. At another, this was like a state supervised meeting.
It was also fab.
Tom and LB went to sit down while I ordered a load of nosh. Lovely to see them sitting down together, hanging out. Unconfined. We ate, they had puds and chatted. About Hot Fuzz, Tom’s mate who said to say ‘hello’ to LB and local police activity in the neighbourhood on Friday evening. LB was delighted with the DVD. He’d also been to the bus museum again today, which he loves.
When everything was eaten and we’d chucked the rubbish away, I asked LB if he wanted to go back to the car or hang out a bit longer.
“Hang out a bit longer, Mum,” he said.
So we did. He carefully removed the cellophane cover from the DVD, peeled off the stickers advertising different things, passed the rubbish to Tom and read the back of the box.
Then we walked him back to his waiting car.
A good outing.
mydaftlife 