This chapter is written from Dan’s brother’s point of view and gives a more medical perspective of his treatment. Rob and Tom spend a difficult night with Dan in his flat trying to manage his psychotic state before help arrives.  To access previous chapters, visit Jane Read’s Author Page.

Chapter 36.

THOMAS

 

                “When they call you crazy, remember that great ideas never come from average minds.”

          Albert Einstein   

 

I love my brother to bits and will always be there for him, but I have to admit, Dan is more impulsive than I am. He takes risks that I would never consider taking. Like the time we found a bottle of wine hidden in his kit bag which he intended to smuggle onto the bus for the school history trip. He gave himself away by trying to decant it into his plastic drinking bottle and spilling most of it onto the utility room floor, leaving it for mum to discover later.

I now think Dan’s teenage impulsivity was normal, probably more normal than my tendency towards caution, my paralysing fear of getting things wrong and my drive to achieve perfection in everything I do. In some ways I envied my brother’s ability to make bold, spontaneous choices. But sampling harmful street drugs at drama school then stopping his medication against medical advice, were seriously bad decisions, certainly ones I would have warned him off, had I known what he was doing at the time.

When his meds were lowered from 100mg to 75mg in 2021, Mum had spoken to me about some small changes she’d noticed in Dan, a kind of carelessness creeping in, a more flippant attitude, chatting more loudly to people and laughing about the frustrating, three tiny tablets of 25mg each which make up his 75mg dose and just how easy it was for him to lose one of them down the plughole if it happens to flick out of his fingers!

Mum phoned her pharmacist friend to outline her concerns. She agreed that it sounded as though the dose Dan was currently on, was ‘only just holding him’ so she arranged for him to have a plasma test to determine how much medication was in his system. The problem with these tests is that the bloods have to be sent off to the hospital to be analysed and there is sometimes as much as a ten-day long delay before the results are returned.

Dan had hated going back on olanzapine after his second episode and it wasn’t as effective as it had been the first time around, so aripiprazole was offered as an alternative antipsychotic. Aripiprazole is certainly less sedating and has fewer side effects, but it can also cause extreme anxiety. I witnessed what can only be described as a full-blown panic attack one afternoon, causing Dan to sob so hard that he could hardly breathe. Steph later explained to Mum that aripiprazole was a more ‘alerting’ medication and can sometimes increase anxiety in younger men. (No-one warned us of this when it was prescribed of course.) Apart from these side effects, we could see that it was doing nothing to combat Dan’s delusional thinking. If we had tried to persuade him onto a higher, more effective dose, we risked his anxiety getting worse. I am beginning to see that prescribing psychiatric meds is more of a case of ‘trial and error’ than a precise science.

Dan’s beliefs were more ‘hard-wired’ after his first relapse, but the switch to clozapine whilst he was still under the ‘Early Intervention’ team in 2015, made a significant difference. He stayed on a standard, therapeutic dose for several years, and although he was still very much supported by us all, he managed to live a fuller and a more meaningful life. During these years, he worked part-time for my brother Rob in his music production business, composing tracks for commercial use. Then he started running music improvisation workshops for the local mental health charity, ‘Converge’, and he also took part in a big York Mystery Play production in 2016 and he even started dating again. After lockdown he moved into his own flat.

Whenever he started a new relationship, Dan would push for the consultant to reduce his dose further, hoping that he might soon be able to dispense with his medication altogether. He was trying to redirect his life towards ‘normal’ again. I understood him wanting to be free of irritating side effects, the monthly clinics, the constant health checks, and especially the needing to shake off that label of, ‘the member of the family who had the mental illness’.

But the drop from 75mg to 50mg in 2021 was the one which caused the return of some familiar and unmistakable symptoms. In was the weekend that he was meant to be travelling to Newcastle with our Dad, to familiarise himself with tram routes and transport systems in preparation for the start of his master’s degree which he’d applied for and been accepted on. That was the weekend when he’d started saying things like,

 ‘God is much more important than any training course and there will be plenty of time to sort out tram routes and train timetables at a later date. I’m not worried. Everything is in God’s hands. Everything happens for a reason.’

The lack of support and understanding of tapering psychiatric medications, discourages many doctors from even attempting it at all. The pharmaceutical companies don’t produce these medications in small enough doses to help achieve the reductions needed which is why people are often left on large, sedating doses long term, sometimes permanently. We have found out a great deal more about ‘hyperbolic tapering’, the slow and careful method of psychotropic meds reduction. It isn’t easy to do, so it is rarely even attempted. Each time patients have try to reduce their meds, their psychosis symptoms return, because the drops are too large or too frequent. The conclusion is then drawn, that the individuals involved will need these strong medications for the rest of their lives, whereas what is really being seen is a ‘rebound’ relapse, where the brain has not had enough time to adjust to the changed dose. At lower levels, even great care needs to be taken with the decreasing size of each reduction. (See the Danish expert-Anders Sorensen’s new book, ‘Crossing Zero’(2025) I find it frustrating that as a GP, I have to understand and prescribe thousands of different medications but consultant psychiatrists only have a limited number to manage and still often get it wrong.

Rob and I have been quite involved throughout Dan’s journey, from its start in 2012, but we are not always told why or when decisions about Dan’s medication have been made. We are both aware that at some point our parents will get too old to do this and may be forced to relinquish their unwavering commitment to Dan’s life and treatment. Then they will need to ‘pass the baton’ on to us in time and we are ready and willing to continue what they’ve started. For now, they still attend every consultant’s appointment with Dan and support him emotionally and financially in every way possible, working efficiently as a team despite their differences, bringing contrasting, but equally valuable skills to their caregiving. Dan is one of the few lucky people to have such a supportive family around him. I know that many sufferers of psychosis are not as well provided for.

In 2022 Dan probably assumed that the miniscule dose of clozapine he was on, (the three tiny tablets making up the 75mg dose) couldn’t be doing very much. He decided that day to go it alone. By the time the results of the plasma test arrived back at the pharmacy, showing that only a small amount of the medication in Dan’s system, it was too late.

 

He had told his most recent girlfriend what he was planning and to be fair, she did suggest that he might check with someone else before going ahead. Dan phoned Steph, the pharmacist, on Monday morning, by which time he had been off his tablets for more than 48 hours.

‘Can you tell my mum that I have come off my meds?’ he said. Maybe if Steph had alerted us at that stage, we might have had the opportunity to take action. But I for one, can understand the ethical dilemma she’d face at this type of request. She told him, ‘Telling your mum is your job Dan. You have a good enough relationship with her to tell her yourself.’ Dan told me some time later,

‘I knew Mum was away in Wales scattering nan and grandad’s ashes, so it didn’t seem right to worry her at the time.’ He thought that conversation could wait until her return. He was wrong.

 

Rob scoops out the plastic containers of steaming Chinese food onto our plates. Dan sits but can’t eat much at all. He refers to Rob as, ‘The King’, for providing us with a great feast and then as, ‘The greatest composer that ever lived.’  Rob starts to inflate the air bed he’s bought so that we can all sleep together in Dan’s flat tonight. He’s using the foot pump then blowing hard into the valve. He is out of breath, puffing and panting, almost hyperventilating with the effort. Dan gets down on the floor and starts doing a series of energetic push-ups, followed by twenty-five sit-ups. Then he is on his feet, boxing the air and running on the spot.

‘I need to bulk up’ he tells us breathlessly, ‘Ready for when I go to prison. I have been such a fool. God has condemned me and I know I am destined for hell after I die. On earth, I am the lowest of the low, only fit to pick up litter for the rest of my life’. He turns to Rob.

‘Punch me hard in the face!’ he shouts. ‘Give me a black eye because I am going to need an alibi if I’m arrested. When I go to court, I will swear on the Holy Bible. That is the only book I’m willing to swear on.’

‘Knock me out, if you can!’ he urges Rob.

Rob looks tearful and says he doesn’t want to hurt his brother but persuades Dan to go and have a shower instead, which he does, walking out of the bathroom, dripping wet and completely naked, explaining,

‘I am just trying to get the basics right. I want to keep things simple guys’ I am realising from his behaviour that Dan will definitely have to be sectioned but didn’t know this would be his last voluntary shower for a long time.

When mum shared her worries with the pharmacist a week or two ago, she was reassured that should things escalate, there would be plenty of meds at the clinic to help ‘nip things in the bud.’  So, I decide to drive over to the local mental health clinic to try and get something to help Dan get to sleep and to help prevent further escalation. If I let them know that I’m a doctor, they will hopefully let me take medication with me to give to him. I want the visit to be as quick as possible, but I am kept waiting and I grow a bit frantic, pacing up and down and looking at my watch over and over again. I am not comfortable with leaving my brother alone, in case Rob panics or Dan goes out of the flat and makes a run for it or something. The whole thing is potentially very dangerous. Eventually, I am handed one sleeping tablet, one measly zopiclone! I have my doubts that this will be enough to combat the terrifying escalation we are witnessing, but I pocket it and hurry back to my brothers.

‘We can only hope this works and will settle Dan a bit and we’ll be able to get some sleep and wait it out until Mum and Dad arrive in the morning.’ Dan’s voice is hoarse because he has been shouting so much

‘What do you guys do for a living?’ he suddenly asks us.

It’s a disturbing development. Does he really not recognise us? He seems so much worse than the last time.

‘You know us Dan. We are your brothers. We’re here to look after you until Mum and Dad get back. They are coming in the morning.’ Rob and I glance nervously at one another.

‘What’s happening? ‘Is this real life? Am I real?’  Dan asks. Everything feels so strange, like I’m in a dream.’

‘Swallow this tablet Dan. Get some water for him Rob.’ I am trying so hard to remain calm and professional on the outside, to continue to take the lead and help Rob and Dan feel safe and confident.

‘Trust me Dan, this will help you to relax’. We must all try to get some sleep now. We will get help for you, first thing tomorrow.’

I lie down feeling tense but exhausted enough to drop off for a while but I jerk awake only a few minutes later, sitting up with a terrified yell and opening my eyes to find Dan crawling toward me on his belly, like a snake, silently slithering along the floor, hissing us as he travelled.

‘What is happening? Is this real? Am I dead? Tell me the truth.’ He says.

‘No Dan, you are not dead, you are just very unwell because you stopped your meds so suddenly. We need to get you some help, just as soon as we can’.

‘Am I dreaming? Pinch me so that I know I’m not dreaming.’ he says. ‘It is so weird, but I have just been

watching everything that is happening from above, it’s like I’m suspended in mid-air, near to the ceiling, looking down on myself and on this scene. Perhaps I am in fact dead?’ he looks to me for confirmation. He seems quite frightened now.

‘Come and lie down next to me on the bed and that might help you to feel a bit calmer.’

He lies down between us for a minute on the double bed. As I hold him, I can feel his heart racing and a film of clammy and cold sweat covering his skin. I take his pulse, check my watch then inform Rob that the sleeping tablet had only knocked Dan out for less than twenty minutes.

It is two am, we are both exhausted and increasingly desperate. Rob is weeping openly by now. Dan gets up and starts to shout at us both again and I am worried about disturbing the people in the neighbouring flat, who have a young child. It is beginning to dawn on us that our plan to look after Dan all night until our parents arrive, is not going to work. We can’t manage him alone.  It would be dangerous to continue to try. We are going to have to get help.

I ring Mum first and she answers straight away, sounding alert.

‘Dad has had a bit of a rest now, so we will get ourselves ready and come right away. Try the crisis team number we’ve been told to use in an emergency.’

I do that right away, but I’m put on hold for over an hour in some sort of queue! This is useless! Rob is finding it harder and harder to manage Dan who is becoming very physical and aggressive again. Eventually someone answers, and after less than five seconds of me describing Dan’s state of ‘Florid’ psychosis, the line goes completely dead. We are cut off and I am left with the dialling tone and a sense of disbelief.

‘There is just no help out there at all.’ I tell Rob. ‘We are on our own’.

I dial again. But this time, 999.