Me and my delirium

Peter Butler has led a colourful life – from delivering sailboats in Alaska to teaching science to excluded secondary school kids. His experiences with delirium, however, have added more colour to his life than he might have wished for. Ever the science teacher, he not only felt the need to educate himself on this relatively little-understood condition, but also to dedicate much of his time to educating others about it.

My experiences with delirium began in 2010 when I was admitted to hospital with what turned out to be a severe infection brought on by a burst appendix.

I’d begun seeing bizarre things like a train running across the field behind my home, and at the same time was experiencing some pretty severe stomach pains. I was operated on just in time but ‘lost’ about a week in hospital and was told that during that time I was saying and doing some pretty wild things. As it was, when I did regain awareness, I continued to see all sorts of things. A pink one-winged seagull, fountains and water running everywhere, spiders on the wall. To my horror I didn’t recognise my own son when he visited.

I spent about a month in hospital and in the end lied to doctors to make them think the visions had stopped so they’d release me. Eventually the episode passed and I started to educate myself about this condition and what had caused it. The doctors had loosely spoken of this term ‘delirium’, but it was clear that the hospital staff had been at a bit of a loss as to how to handle it – there was very little information about how it had come about.

I now know that delirium is quite a common side effect of severe infection, and especially common with things like bladder infections. It most often affects older folks (though not always) and a lot of the work I now do is with charities like Age UK, visiting care homes and educating staff about how to recognise it and how best to deal with it. To help build understanding, I’ve also lectured and held workshops in hospitals and appeared in videos.

It’s important that all staff understand and recognise the symptoms, from janitors to receptionists to nurses and doctors, so that steps can be taken to care for the patient and you can get to the bottom of what’s triggered it.

For the good of the patient, as well as those around them, it’s useful if they can be put in a relatively isolated ward. This reduces stimuli and disruption. You can also try to explain to the patient what’s happening to them, talk them through the logic of what they’re seeing and help them separate their visions from reality. One of the worst things you can do is just tell someone what they’re experiencing isn’t real and treat them as though they’ve ‘lost the plot’. You need to take time to talk them through it, but I fully recognise that time is so stretched for doctors and nurses today that this is a struggle. You really need everyone on board, including family members, to help them see that they can get past it.

It's really a terrifying experience though. I think it was my background in science that helped me through that first experience – when I saw something outrageous I made myself think ‘Hang on a minute, that doesn’t seem right. How would that happen? Is it physically possible?’ Then, when I’d recovered, I automatically wanted to know why this had happened, what had caused it, and I ended up getting in touch with experts in the field. They were quite interested in me as I was one of the first people they’d come across that had a real recollection of what I had experienced – I can remember it all very vividly and describe the type of thing I was seeing in detail. I can also remember the tactics I used to try and hide my condition from the doctors, as well as how I helped myself get through it.

My latest experience with delirium was only around 8 weeks ago. I broke my leg very badly and was hospitalised again. Again this seemed to trigger an episode of delirium where I ‘lost’ about a week. When I came to this time I was unable to remember the episode, but the nurses told me they had recognised what was going on and had put me in a quiet area where they could monitor me more closely and minimise disruptions.

I definitely think, since my first experience, awareness of delirium has grown and knowledge of how to manage it has improved. There is a way to go though. I’d love to see more research being done into the causes and after effects.

I’m still recovering from the effects of this last spell, as well as the broken leg itself, but when I’m back on my feet I’ll be continuing the awareness-raising work. I was recently interviewed by the Australian Broadcasting Corporation (ABC) for a radio segment on delirium so I know there’s plenty to be done globally to raise awareness, and I’m happy to do my bit with that!