Category Archives: Laughing boy tales

The Unit. Day 3

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Went to visit LB this morning, after Sue and Tina called round in the mini bus with LB’s classmates. They’d brought a lovely card and flowers. Hilariously the kids pretty much ignored me but waved like crazy at Chunky Stan. LB was in the bath when I arrived, so I hung out in the lounge playing Candy Crush. It wasn’t so much about seeing him as knowing he was OK, letting him know I was around and, for me, being in the same space as him.

Various staff members stopped to chat and the other dudes hung out too. It was enormously peaceful. The odd offer of a drink. Lunchtime came and went, a communal eating of beans on toast. Some laughter and a sense of familiarity.

A staff member (JK) we hadn’t met before pitched up. He mentioned that LB’s dad had phoned the evening before but LB had said no to sharing his health information with him.

Screeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeeching brakes.

Whaaaaaaaaa????????

Oh yes. LB had the right to say no. He also had the right to say no to visitors. We should ring so the staff can ask if he wants to see us. Ehhhhhhh??? He’ll never say yes to seeing me???? I make him fill the dishwasher????? The room started to spin a bit as the extremes to which this could be taken to started to sink in. JK said that if LB wanted to appeal against his section, they would support him. Oh boy. LB with rights. That was kind of hilarious. He is going to LOVE this. We talked through this a bit more, JK talking about various past experiences with patients. The room stopped spinning.

I left after 2 hours without seeing LB. He knew I was there but chose to stay in the bath. I rang the unit later to see how he was.

“He’s been fine all afternoon, totally absorbed in his map of Ireland that K gave him. He’s been tracing road routes along it.”
“That’s brilliant. I spoke to JK earlier about seeing if LB wanted to see us, which we’ll do in future. I just wanted to say thanks for letting me hang out so much there this week. It’s been so important to get a real feel for the place, see how everyone interacts and so on. I am so impressed by what I’ve seen.”
“That’s great and no problem at all,” J replied cheerfully. “We’re here to support the families as well as the patients.”

I’m off to have a piece of coffee cake now. And wait to be served the court documents.

 

The Unit. Day 2

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Got a call this morning to say that LB had slept ok, up very early, had asked for toast and was about to have a bath. Fab. I went along an hour later and hung out in the lounge. Heart radio was playing some good music, I had my ipad and art therapy was happening in the dining room with two OTs. Very chilled. It’s so important to be able to hang out in the same space as him. LB’s key nurse, K, came and filled me in with more info and got more info about LB, especially his likes.

“Oh and he’s pretty interested in Ireland, or the Emerald Isle as he calls it.”
“Ah, that’s good, I’ll tell him I’m Irish.”
“Blimey are you?”
“Yes, I lived there till I was 10.”
“We’re laughing then…”

It was all very relaxed. LB appeared eventually, clean, calmer and seemingly a bit more at home.

Later that afternoon he was sectioned again. Section 2, which involves a team of doctors assessing him led by the psychiatrist who discharged him a week or so ago. [Cough cough]. Section 2 lasts 28 days (though it can be withdrawn with good behaviour).

We turned up this evening to hear that he’d got very distressed at first, because he wants to go home, but had calmed down after a small amount of sedative. K was just telling him about his rights, with a patient information form. This detailed his right to a tribunal and gave information about the legal process, solicitors and the Law Society. We chatted to him about the party we’ll have when he gets home, with special guest, Chunky Stan. He chuckled. As we left, he was bouncing down the corridor, clutching the information sheet, calling for his legal team to start the appeal process.

Happier times.

Fairer Charging?

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In another twist you couldn’t make up, LB got a letter today from Oxfordshire County Council; he has to pay £63.45 a week towards his care, under the Fairer Charging Scheme. I called the guy who explained what it meant but I was too tired to take it in. We left it that LB would pay the backlog that had built up since November when he entered adult non services.

I mentioned it to Rich when he came in from work.

“What care???” he asked, baffled.

“Er. Good point. I dunno, I’ll ring him back and ask him.”

In an almost comedic conversation, cheerful chappy at the Council said that LB has to pay the County Council this contribution towards the cost of his care because he gets a direct payment of £151 per week. This is sitting in a bank account. The fact that we ain’t been able to buy any care is irrelevant. Can we use the direct payments to pay the contribution towards the non care? [I know, my brain nearly melted at this point]. No, that’s not allowed.

In effect LB will be paying the Council for the care we’ve provided.

Direct payments that aren’t used will eventually be reclaimed, and then LB can ask to have the money reimbursed. Now my brain is pretty foggy at the moment, but this whole process is beginning to whiff a little bit.

Update: Payment is being delayed while chappy speaks to the direct payments team about reclaiming the direct payments. This personalisation business is a lark. No care just aggravation.

The Unit. Day 1

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Saddest time ever. But we keep telling ourselves it’s a necessary stage to help LB. He’s been sectioned now. Twice since yesterday evening. And was restrained in the night. On the plus side, we can visit between 10am – 8pm and it’s close. It’s easy to pop in for 10 minutes and the open door policy gives some confidence in how the staff are treating the patients.

It’s a building rather than a ‘ward’, designed in a circular shape so you can walk down the bedroom corridor, into the dining room through to the lounge and quiet room and round to the front door. Spacious, clinical, warm and clean. The staff don’t wear uniform and it wasn’t that clear at first who was staff and who was patient. Kind of hilarious.

The other four patients are youngish. We hung out in the lounge last night, waiting to get the OK to be there (after a bit of a mix up about ‘beds’). “Do you like fishing?” Rich asked one guy who was watching some fishing programme on the big TV. “Yeah, love it. I caught five fish!” “Cool! What kind of fish?” asked Rich. “Normal fish”, he said, cheerfully. Jenny* sat quietly chatting to herself about her trip to Londis the next day. She ignored LB when he asked her what she’d ‘got’.

Today our visits were about setting LB up with home comforts. I took in the rest of the coffee cake with a mobile DVD player and his Eddie Stobart box sets. He was pretty agitated when I got there and had a right old tough nut character watching his every move from his bedroom door. Tough Nut took me to the kitchen to get a knife to cut the cake. “They always find the first couple of days hard,” he said, kindly. LB ate the cake. His first food since he’d got there.

The second visit, with my newly appointed (she doesn’t know it yet) advocate Fran, was to drop off some more DVDs and money to buy snacks. He was calmer but sad. He wants to come home. He wants to go to Trax.

sackboy1The third visit with Rich was about pimping his room. A poster of the London Underground and Beatles album covers. He was asleep mostly, endured a bit of a cuddle and asked for  Series 2 to be put on his DVD player. He hadn’t touched his dinner.

So. A long day. And here’s to the Coffee Cake Fairy working a bit of magic. LB needs it.

*Pseudonym.

Charlie’s Angels

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At 8.45am today I was sitting with the phone ringing through the list of day services and respite from the social services. We were desperate for some help. Got to number three (No. 1 only took referrals through the county council and No. 2 sounded very dubious and said to ring back in a couple of hours when a manager might be there). The phone rang. It was Vicki, LB’s teacher. “We’re coming over to see you right now, me, Tina and Sue. We can have a chat and then Tina and Sue will take LB travel training.” Eh? Wha???

Twenty minutes later they were sitting in the kitchen, giving Chunky Stan fuss and organising a new school timetable for LB that didn’t involve him going into school at all (but them going out of their way to collect him and drop him off). Their focus was LB, and our family.

Sue and Tina went off with LB to catch the bus to town. Vicki turned to us saying it had all been a bit last minute; she’d told me on the phone they were going to come over before she’d checked with the head teacher if it was ok to leave school. They felt they just had to do it.

This is what support looks like.

And thank you beautiful ladies.

Definitely not laughing boy

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LB is upstairs, muttering and smacking his legs, shouting out and watching scrap metal videos on youtube. We had a burst of sunshine this afternoon when he came down for a piece of coffee cake and chuckled about how good it was. Funny how tiny snatches of what was can be so powerful. I went up to see him a short while later but he was talking a bizarre type of gibberish and looked at me with hatred. He muttered about how Sara had been killed.  “Ok, matey, I’ll be downstairs if you need anything”, I said,” [fake] cheerfully.

We are occupying this strange, exhausting, stressful space at the moment. He’s threatened Rich but remains OK with Tom and Owen. We have the medication to knock him out if necessary, though where the line is drawn between deciding he needs medicating before it’s too late to get him to take it isn’t clear.  We are piecing together strategies; not say no to him outright, prepare him carefully for any expectation he will do something, listening constantly for any shift in tone or intensity, mentioning any past special interest (Mighty Boosh, Irish lorries, cross channel ferries) to try to snap him, even fleetingly, into the coffee cake mood.

Today I chased up social care. Yes, despite the set of exchanges on Friday afternoon with the learning disability team, I had to contact them. The duty Care Manager seemed active and concerned which is great. He put me in touch with someone from Southern Health Outreach (based at Saxon House, the building with the snooker table). I rang them and have an appointment for April 3rd. Seventeen long days away. The psychiatrist rang straight after. She suggested we meet or have a telephone consultation soon. Er, right now would be good, I said. She found her notes, listened to me (without really listening) and suggested doubling his anti-depressant. We are meeting her in a week to see if this has helped. The psychologist was already booked in to meet us on Thursday. That is no support our support right now.

I’m writing these miserable posts because I think that we shouldn’t (not we as in our family but we as in every family with a dude like LB) be in this position. It screams to me that support and services are woefully inadequate and structured in a way that ultimately cause harm rather than good. LB’s following in almost identical footprints to a classmate, a situation I never dreamed of six months ago.

Now I ain’t a psychologist, or a psychiatrist, but I think LB probably wanted a mate, a girlfriend and a slightly different structure to his life. And now he’s retreating into some hideous fantasy type world that has got trouble written all over it. Doubling anti-depressants and organising late in the day, middle aged carers isn’t going to do an awful lot. But hopefully I’m wrong.

Mysteries of learning disability ‘care’

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Yesterday, I raged enough at the emergency social care guy to get the duty psychiatrist to call me. This is the learning disability team psychiatrist. We had an astonishing exchange that went on for nearly 20 minutes. He kept insisting that, if anything happened this weekend, we had to call the out of hours GP who would give us a prescription for LB. He would email the other psych, who had discharged him, and tell her what had happened for Monday. I tried to explain that when LB goes off on one, he goes off on one and there ain’t really a convenient space to call the GP, collect a prescription and find a nearby chemist. He didn’t get it. LB ain’t his patient. He ain’t seen him. He can’t do anything else.

Blimey, that don’t matter. Dr Crapshite only saw him once before discharging him so no big relationship there.

No dice. He just kept repeating the out of duty GP path. It could almost have been a recorded message.

I don’t get how he can be a specialist in learning disability and have no understanding of what I was describing. I also don’t understand what the point of a duty psychiatrist is if they ‘can’t’ do anything. Stupid, meaningless layers of process that just mean ultimately, nothing happens. Eventually he asked me if LB had got worse recently. “HE PUNCHED HIS TEACHER IN THE FACE THIS MORNING!” I exploded. “Oh, has he not done that before?”  I hung up.

The phone rang straightaway. He’d leave a prescription for lorazepam at our surgery.

“Thank you,” I said.

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

The interview

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ryan5-49

In celebration of LB’s first ever job interview, at very short notice. A volunteer post at Helen and Douglas House, two hours a week to start with. He handled the interview the way he largely handles life; quietly chattering to himself and occasionally breaking off, when gently encouraged [nagged], to answer. The volunteer co-ordinator who interviewed him  was exceptional. As were the receptionist and the estate manager who will be in charge of him. It was one of those very rare times, outside of family, school and some specialist support, that everyday rules are adjusted (or ditched) to enable a different engagement. One in which unusual behaviours aren’t ‘wrong’. Just different.

And LB? He rocked it.

The maybe pile

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11.06pm. Wednesday night.

“Mum? Mum?!!! Where’s my Hornby book Mum?!!!”
“Er, which book?”
“The Hornby book Mum. About trains Mum.”
“Mmm. Dunno. Do you need it now? It’s getting late.”
“Yes, Mum. Where is it Mum?”
“I dunno. I’ll come and have a look in your room.”
“Yes Mum.”
… “Mmm. Can’t see it. How about Horrible Histories?”
“No Mum.”
“Victorian London?”
“No Mum.”
“Eddie Stobart: the Story?”
“Maybe Mum.”
“Ok. I’ll start a maybe pile. How about Cars: The Cowley Story?”
“Maybe Mum.”
“Alex Rider graphic novel?”
“Maybe not Mum.”
“Bus magazine?”
“No Mum.”
“The Oxford Bus Museum booklet?”
“Maybe Mum.”
[…..]
“Well there’s quite a few books in the maybe pile now. Which one do you want to read?”
“The Hornby book Mum.”