Tag Archives: mental health

The Unit. Day 5

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LB seemed a bit odd when we visited. A mix of unusually cheerful and slightly different mannerisms. He was in his room where he spends his time when he’s not in the bath. His eyes seemed small and his face a bit puffy. I suppose he’s coming up to the best part of a week now without daylight or any exercise.

Rich tidied his room up while I drew him an Irish lorry from County Mayo.

“Where’s County Mayo Mum?”
“I dunno whereabouts it is. Hey, let’s look at the map K brought you and see.”

Silence.

“Where’s your map, LB?”
“I threw it away Mum.”
“Eh??? Why did you throw it away?!”
“I threw it away Mum.”
“Oh. Did it get torn or something?”
“Yes Mum, it got torn.”

The Unit. Day 4

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After feeling strangely heartened by the reminder that LB had rights, I began to reflect on what this meant in practice.  Who would/should safeguard those rights? He said no to an advocate when he was sectioned, but he doesn’t really know what an advocate is. He’s been in the unit for four days now with rotating staff. What they know about LB you could write on a postage stamp. We’ve hung out with the dude for 18 years and loved the socks off him. If anyone has his best interests at heart, I’d say we probably coast it. I get the arguments about the constraints and limitations parents (particularly mothers ‘cough cough’) can place on disabled kids through an overly developed sense of protection. But I also know how vulnerable these dudes are.

We rang the unit at lunchtime to see how he was. The  phone was passed straight to LB. I just wanted to know if he was OK and having a grunt from him wasn’t really going to answer that. I had a quick chat (not really the right word for a largely one-sided conversation) and asked him to pass the phone back to the nurse.

“We’ll visit this afternoon around 4ish if that’s OK. His sister will be back from university. We’ll ring before we come.”

“Great.”

Later that afternoon I rang. The phone was dead. Oh. Luckily, I’d been given a second unofficial number by someone who recognised how distressing this was for families. That number was eventually answered and with some resistance (all of a sudden bedtime routines happened straight after dinner thereby interfering with visiting hours), we were able to visit.

LB was in his room and seemed pleased with his cakes and bus magazines. We hung out for a bit, and, when we left saw some of the other patients. As usual, they were chilled and said hello.

We haven’t seen any other visitors all week. Despite the extensive visiting hours pinned on the front door, there are no visitor type concessions, like a vending machine, or waiting area. I don’t know if there is an assumption that people won’t visit or that visitors will cause disruption. Or maybe the other patients have exercised their rights and refused visitors. From the interactions I’ve had with them over the last few days, I find that unlikely. It seems desperately sad if there ain’t any. But I can kind of see how it could happen.

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 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.

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.

Choice and autonomy my arse

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At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

Monitor, distract (and Chunky Stan)

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Brief summary. LB’s become very anxious, constantly agitated and out of sorts over the past couple of months. He’s developed a fear or phobia of someone harming him.  His teacher/school nurse have suggested he be referred to mental health services which we’ve resisted. First, because we feel the medicalisation of these dude kids is a bit too free and easy (and can be damaging), and second, because previous encounters with mental health services have been pretty pointless (along the lines of “Er, have you thought of using star charts?”)

ryan5-25Then the Christmas tree fell over. Probably because all the baubles had been put on the same branch during a bun fight deccy situation. ‘Mmm’.. I thought. ‘This don’t bode well’….

Christmas morning, LB lost it over a tiny thing and had a distressing episode (? breakdown? frenzy? malange? Slinky malinky?) Not sure what language there is to describe this sort of thing, other than crap, meaningless jargony social care/health type stuff). But horrible. For everyone. Especially so at Christmas.  He stayed home, rather than going to his dad’s, and we swung into a ‘monitor and distract’ routine. For those of you who haven’t come across this (you lucky bastards), it goes like this;

    1. Constantly listen and look for any signs of mounting distress (in LB’s case, talk of being attacked, gesticulating and gurning).
    2. Act instantly to stop these (in LB’s case, through a firm ‘Stop it now’).
    3. Follow this up with a distraction (in LB’s case, an Eddie Stobart book, Mighty Boosh DVD, drawing cartoon figures).
    4. If necessary, follow this up with an uber distraction (in LB’s case, a very long, hot bath).
    5. Revert to A.

ryan5-23So 48 hours of monitoring and distraction was successful but relentless, wearing and, again, pretty shite over Christmas. We also weren’t confident of containing his distress anywhere other than home. I called the GP who suggested a type of prozac. And some emergency tranquillisers to use, if necessary, until the medication started to work.

That was yesterday morning. Last night (after step D) LB turned into a bit of a chill pill. We stayed up watching documentaries like Cop Squad with him. Enjoying the peace.

A mistake of course. Other family members also need monitoring. Like cheeky Chunky Stan.

ryan5-24

LB, Bollo and the voices

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Had a bit of a scare a couple of years ago.  LB’s teacher wrote home in the diary that LB was hearing voices in his head. We just dismissed this as ‘that’s just the kinda guy he is’, but the teacher and school nurse were worried it could be evidence of underlying psychotic tendencies. They organised an urgent referral to the local psychiatric hospital. Oh yeah, it ain’t a dull ride having a dude like LB.

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Clutter disorder?

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I woke up this morning with the intention of doing a bit of de-cluttering.  Bit of a general clear out.  So far, I’ve been unsuccessful.  I sorted through all the stuff on my desk, put it into piles and then put most of it back on my desk.  “So what?” I hear you say, through a big yawn.

Well, it’s a big what.  First of all, to give you an example of what I’m talking about, here’s a small bit of cluttered space that is to the left of where I’m typing right now;

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