Buffet lunch at our favourite Indian restaurant. Fun and filling. And no burgers.
Back from work this evening to find Will here. Fab surprise. He drove me [????] round to see LB. Yes. He drove me round to see LB.
We found LB in the living room with his DVD playing on the big screen. Everyone sat around, chatting a bit. Watching the film. Hot Fuzz. Peaceful times.
LB didn’t really say much but Will caught his attention a few times – with mention of Chunky Stan and his work trip to Somerset tomorrow. And Eddie Stobart of course.
50 days later.
I got a call yesterday evening, after visiting LB. Awkward, awkward, awkward. The ensuing discussion erased any memory of the guy’s name or credentials but he’d been in to assess LB that afternoon to decide whether he was being deprived of his liberty or restricted in his movements.
He was surprised and shocked we knew nothing of this visit especially as he knew we were going to visit LB shortly after his visit.
His assessment involved conversations with LB and two staff members, and his conclusion was;
- LB is restricted but not deprived of his liberty because he isn’t trying to abscond when out of the unit, is offered regular options to leave the unit on outings (which he regularly turns down) and hasn’t said he wants to leave. Although he did tell the guy he didn’t want to be there. Conclusion: apart from the locked door, there is nothing stopping him leaving.
He wanted to know what I thought about this.
Wordgames. That’s what I thought about it. Wordgames, spin and nonsense.
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.
More struggles over adulthood, rights and capacity… though I’m really trying. Honestly.
LB was due to go to the farm yesterday. Taken straight from the unit, bypassing school, to work with Sue and his classmates. When he was told to get ready, he didn’t look keen so he was asked if he wanted to go. “No, maybe” was the answer. There followed a hilarious conversation where he was asked various questions about whether he liked the farm and what he wanted to do, with a lot of “no, maybe” answers. It was finally established that he didn’t want to go to the farm and would prefer to go for a second choice; a drive and a long walk. His teacher was called and she asked to speak to him
(love her). He didn’t budge. He later made it clear he didn’t want to do the drive/walk option either and stayed in his room. Whose idea was it to give this dude choices???
I’ve heard a lot of stories like this to do with learning disabled people making choices (usually from parents). It’s a tough one. I know, I KNOW, I KNOW that people should be able to make decisions about what they want to do. But LB will always choose to stay in his room
hanging out “self occcupying” if he’s given that choice.
I think my struggle is around two overlapping things;
- LB isn’t making a decision in a vacuum; the choices offered, the way in which they’re presented in terms of the language used and the way it’s structured, the relationship between LB and the choice offerer, the implications of the decision made for that person, LB (and others) all feed into a complex set of interactions that can mean that the choice isn’t really a choice at all.
- There is a constraining kind of meta-level control always present which means that, ultimately, LB can only really decide what he’s allowed to decide. If he makes a decision that isn’t perceived to be in his best interests, the
swatmental capacity team come in and stop him from making that decision.
So it’s a heavily managed and mediated, complex, uneven ‘choice’ space. I don’t know what the answer is really.
And I can’t see him ever emptying the dishwasher again.
Rich visited LB yesterday. Apparently LB was withdrawn, not very communicative and didn’t want me to visit. He said I should ring the unit today. I rang this evening on the bus home from work. Blimey. He wanted me to visit.
I jumped in the car as soon as I got home and whizzled round there. He was OK. Been in his room all day (after a good day at Trax on yesterday), quiet and a bit subdued. The nurse came in with a plastic kidney shaped dish with a cup of water and pot of pills. Funny because you forget it’s a hospital really. LB carefully drank the full cup of water, put the cup back on the tray then picked up the pills to swallow. Love him.
So, as far as we know, he’s a voluntary patient. He’s going to the farm tomorrow with Sue and his class. And hopefully getting back to the chill pill he was on Monday morning. That’s pretty good really.
So, it’s the early hours of day 28. The end of Section 2. (I don’t know the language/ways in which we should be talking about this, so apologies if I’m being crass.) LB’s now been detained for 28 days.
I’m awake, worrying, agitating. I know, through a kind of detective work and realisation of strategic positioning, that LB isn’t going to come home tomorrow. But I don’t know that for sure. Here’s what we have to go on;
- It’s unlikely he’ll be sectioned tomorrow because he’s chilled out.
- The mental capacity team (who are???) are likely to decide he lacks capacity to return home. Apparently they were going to pitch up this afternoon.
WHO ARE THEY??????
- No one has been in touch with us to discuss him coming home.
No one? Like who???
This uncertainty is so upsetting, distressing and wearing. So outside of what you’d expect to experience within mainstream health experiences (I hope).
There is a bizarre, almost sleight of hand thing that seems to be going on;
LB is an adult, so back off and let him decide what he wants, you pushy, good for nothing parent, you…
… er,we’ve reached a bit of an impasse, can we just call you in for a quick discussion about x/y/z to do with LB?
We’ve pootled along for 18 years, bringing up LB with his brothers and sister. Suddenly he’s been given additional powers to make decisions about his life, when a) his sibs discuss their big life decisions with us and b) he doesn’t necessarily have the ability/competence to make those decisions. Why is he given a special pass to decision-making that the other’s aren’t? Why is the starting point with dudes like LB that the intention of parents, carers of learning disabled people are somehow suspicious?
I don’t know the mental capacity team who are assessing whether or not LB is able to make the decision to stay in the unit. From what I’ve read, this team should include a family member; maybe my comments about his capacity in two team meetings count towards this assessment. I don’t know. I don’t expect that many of them are awake right now, thinking about this. Worrying about this. Thinking about LB. I know that none of them know him like we do. That’s what I really don’t understand.
Coasting at the moment on the delight of having LB back to his old self. We really did descend into a hideous space over the past few months and, in the maelstrom that created, lost sight of the funny old dude he always was. I love the unit. (Rich keeps pulling me up on this. He says my bar is set so low, in terms of expectations of support, that I’m calling something good, brilliant. Ha! In some respects I don’t care. It’s fucking brilliant in my book. And I love it).
What I can’t quite get my head around, is this adult rights stuff. LB may, or may not be returning to school tomorrow. We don’t know. We don’t need to know (arguably). He’s an adult. His section 2 finishes on Tuesday. This was discussed at the team meeting last Monday; mental health, mental capacity and his right to choose to come home. We’ve openly said, and said to LB, that we think he’ll benefit from staying longer in the unit. He’s a bit hesitant on this, but not dismissing the idea. There seemed to be some agreement on this at the meeting. When he was admitted he “wasn’t right” (to quote someone whose known him a long time). In the last month, he’s been removed from any stress (other than being somewhere he didn’t want to be at the beginning) and hung out in an environment that’s comfortable, warm, clean, friendly, with good food, constant attention (or space to withdraw from attention) from people who seem genuinely caring and thoughtful. With family and friends close enough to visit on a daily basis. The contrast between everyday life and this unit are huge. The return to school, while staying at the unit, is a way of assessing how he manages life outside that space and, hopefully, offering him help with dealing with the bits of life he finds hard.
So, Tuesday. As far as I understand it, it’s unlikely he’ll be sectioned again (way too much of a chill bear for that now), and there is some hope he’ll voluntarily choose to stay in the unit for a bit longer. But when read his rights, and it’s made clear to him that he’s no longer detained, he may decide he wants to come home. The only way then to keep him in the unit is if a team (made up of all sorts of people including a family member as far as I can tell, though we’ve not heard anything further) decide he doesn’t have the capacity to make this particular decision and it’s in his best interests to assign? apply? smack him with? a deprivation of liberty safeguard (DoLS). [Sorry, I’m woefully unsure of the language/way in which these things are articulated]. When I think back to a train journey home from a disability studies conference last Autumn with a colleague who was leading a study on DoLS and trying to explain to me what they were, I’m reminded of the speed at which LB deteriorated.
I’ve absorbed the gist of DoLS through this leaflet produced by the Department of Health easy read information. Not an easy read emotionally. I’ve been worrying about Tuesday. At many levels. From the enormous – wishing/willing your child to be deprived of his/her liberty is pretty horrendous – to the basic practicalities; would we get a call to come and collect him by 7pm at the latest (I dreamt this situation the other night)? And if yes, what would happen if he started to deteriorate again?
Then, at a meeting on Friday about our experiences of the last couple of months, a health/social care manager said in passing that the community team would have been in touch to start discussions around LB’s care plan for his return home. Eh? Wha? The ‘community team’? What’s that? The Care Manager? Someone else? These questions underline how crap adult services are. Or how I shouldn’t expect to work full time, as the mother of a learning disabled young person and, instead, take the time to fully investigate these mysteries.
But nah. No one’s been in touch about that (community team or anyone else ‘official’). Leaving the meeting, I gradually felt a sense of release. Not relief. We’re not going to have LB home without a proper care plan in place. We’re not going back to that place. We want him to come home. Can’t wait for him to come home with effective support in place. Support that’s supportive. And I don’t think that’s going to be sorted out for 7pm, Tuesday evening.
It’s funny really. You have a (learning) disabled child, the world kind of falls apart and then falls back together, bit by bit. There are unexpected highs, deep lows, challenging times and a backdrop of relentless meetings with professionals. These meetings are sort of necessary (because what else have you got without any reference points?) but pointless because there is a lack of real understanding or engagement with either your child, or your lives as a family. We eventually shook down, accepted LB’s difference and began to notice his humour, quirkiness and qualities such as generosity, lack of guile, artifice and his honesty. We treated the meetings with gritted teeth. And got on with life.
Then came the recent inpatient assessment and subsequent sectioning. I was tipped into mum redundancy (MR). Suddenly and without warning. The warnings for the impending hospitalisation were flashing brightly since Christmas, that was only really a matter of time (though it could have been circumvented with effective action). The warnings for MR were completely buried.
Call me old fashioned, but it strikes me if you have (not in an ownership way) children, you don’t really stop being their parent. I still tell Rosie what to do. She doesn’t always do it, but I feel I should provide some steer. My mum is still my mum. These are lifelong positions, that shift and change, but (commonly) remain centred on love, responsibility, reciprocity and a gut-wrenching desire for your child/ren to have the happiest, most fulfilling lives, possible. (I realise that this isn’t always the case).
This is confounded when the child is learning disabled and reaches that (constructed) age of adulthood. Necessary changes to the way in which learning disabled people’s lives have been conceptualised and understood, a shift from institution to community living, and the accompanying political call for self advocacy, autonomy and empowerment, has led to a focus on rights. I support this move completely. Learning disabled people, like anyone else, have the right to make decisions and be encouraged to have aspirations and the opportunity to lead fulfilled lives.
At the moment, LB has the right to decide whether he sees us or share his health information with us. The implications of these rights are substantial. The problem for me is, an emphasis on his rights can be misunderstood, misinterpreted, misused or treated as something discrete, outside of the broader family context. I believe, barring some thunderbolt shift in health and social care provision, that LB’s potential to lead a fulfilling and happy life will necessarily involve his family. For us to be sidelined at this point will have a potentially catastrophic effect on his life chances.
‘Eh? What’s that?’
‘He could have an advocate. S/he would look after his best interests.’
‘He turned down the opportunity to have an advocate. He doesn’t know what they are.’
‘With clear explanation, he can decide to have an advocate. He’ll be offered one again in ten days time, by the terms of his section.’
‘That’s great. But they won’t know him. Surely that’s important?’
Does our experience of LB’s family count for nothing?? Should an advocate be a substitute for that understanding, or instead complement it and work with families?
Once again we’re left without any guidance. It’s like being back at those early days when we knew there was something different about LB but given no guidance about what that meant, for him and for us. We’ve re-fallen into an unexpected space in which he is treated as a consenting and competent adult. A space which is so incongruent and so alien to our experiences of the past 18 years. Maybe it’s a good thing in theory. Maybe LB is at a stage in his life to shake off the confines of his family and do what he wants to do, without dishwasher duties or an expectation that he will join in social obligations. I don’t think so.
I keep returning to how this idealistic position ignores the current political climate and contraction of support and services for learning disabled people. As a redundant mum, I can use the hours I spent advocating for him (unacknowledged and unrecognised by services) doing something else. Like developing my beginner crochet skills,
Or maybe my/our expertise could be recognised and used to help LB in partnership with those who now (supposedly) help him realise his rights.
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.
The 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.