Delirium – A Relatives Perspective

I have no solid memories of my time in ICU, or the days that followed. I have a blank of roughly 3 weeks, filled only with fuzzy images and things that I ‘think’ happened. It’s a scary place to be, not knowing what is reality, what isn’t. Not knowing if the people there to help you are actually there to harm you. From my fuzzy memories at times I felt like I wasn’t listened to or taken seriously. Was that really the case? Probably not……. but who knows.

My family would visit me but I don’t consciously remember it. I ‘think’ I remember shapes, words, sounds but nothing clear. As time went on and I stepped down onto an acute ward little anecdotes would be told about amusing conversations that had taken place, about things I’d sworn blind were in front of me or things that were happening. At the time it was just part of the whole chaotic experience.

But as time passes and conversations are had, I’ve begun to realise that there is a whole other story running at the same time as mine – The story of the relatives.

During my entire stay in hospital, including ICU, nobody talked to my family about Delirium. Nobody. When they came to visit me on the unit and saw me on ‘another planet’,  they didn’t know that what they were looking at was their loved one experiencing delirium.  When staff escorted them from the waiting room to my bedside, there was no mention of delirium during any updates on my condition. When I moved onto the ward and I asked the nurse about the hospital riots – nobody considered to check if I’d had confirmed delirium.

My family have often said that they wish they’d know about delirium. They wish someone had told them. They believe they should’ve been made aware. Instead they not only faced someone they knew looking completely unlike them, they also faced someone they knew who wasn’t behaving like them. The confusion, anxiety, fear, hallucinations…..all on top of the lines and tubes and machines. Had they known about my delirium, they could’ve supported me with the understanding that I wasn’t losing my mind, it was ‘just’ Delirium. Relatives have to endure so much. Relatives often get the least amount of support. In some respects, being the patient is easy – because we can’t see what our relatives see and they will carry those images with them…….. for life………….

I often try to reflect on what, at the time, my family could’ve done to help me. I struggle to answer that as I just don’t know.  So many times I hear people saying what should or could be done to help those with delirium, myself included, but do we actually know if any of those things work? The only way to find out would be to put someone in a delirious state and ask them weeks later if anything helped……and I’m not sure many would volunteer for that (though I probably would!!).

So how do i know what might have helped? I don’t – but from my fuzzy memories I can build ideas. It all comes back to communication, every time! IF my family had been told about my delirium whilst in ICU, they probably would’ve spoken to me differently because they would’ve understood the situation better. If they’d known, we wouldn’t have argued about a lifeboat in front of me or a spitfire over head. On step down, when I recalled something such as the riots they could’ve reassured me, explained about the delirium and made me feel safe. I may not have understood but at least I would’ve had a reason for the ‘weirdness’ I’d been experiencing and not been left wondering…..Being critical ill is a lot to deal without with out the crazy visions!

Every patient experience, good or bad, can be an opportunity to learn and to make sure that things improve. I was extremely lucky to be a patient at University Hospitals Plymouth (Derriford), where the care I received was the best (I know, I’m biased!). But what makes me happy is that the staff listen to patient feedback and improve things for the better. I understand that a step down system is now in place where patients are followed through from ICU to ward. Better handover practices have been implemented and most important of all, education of Delirium is ongoing. Delirium can affect any patient, not just those on ICU, but the classic signs are all the same and often the measures that can be taken to help someone with and through delirium, can be the same.

It’s time to turn Delirium awareness into Delirium Action.………