ICU Psyhcosis

[Jaly234]

I had a steroid induced ICU psychosis that lasted 4 days and nights after having spent 7 days in an ICU. I have been left traumatised by this - staff ignored this was happening to me much to the distress of my family. As a result i have been left with PTSD, clinical depression and suicidal thoughts. there is not a day that goes by when i wish i had died last year rather than go through what i did - it was not worth it in order to 'live' - especially in the state i was left in, it is no life. As soon as i was moved from the ICU i was not well cared for, not well looked after and staff gaslighted my family by telling them i was just a bit confused! they did not believe this - day 1 i am trying to throw myself out of a window which i don't remember. i was trapped in a living hell - i was not confused, i was trying to hurt myself constantly and others to get away from the horrors of the psychosis I experienced. I am SO traumatised by what happened to me it has completely changed and affected me as a person. i was totally humiliated and degraded in the hospital by ignorant staff. The UK does not know how to treat patients who have been through this. it is the most terrifying thing EVER. i am still recovering a year on and have received limited support. As such I have now signed a Power of Attorney and Compassion in Dying that clearly states i refuse all emergency operations and treatments in future and i am never to be put in an ICU again - i would sooner die. i have never been so humiliated, degraded and embarrassed in my life. my stay in hospital and the ICU psychosis has destroyed me basically and the staff at the hospital where i was mis-treated took no responsibility for what they did to me. i feel like ghost now - not living but not dead. More needs to be done - in the UK at least - to understand what ICU psychosis does to a person and what needs to be done to treat it properly. i should never have gone through what i did. The hospital did no risk assessment on me, they did not inform my family i could be at risk of an ICU psychosis . They should have done a risk assessment - these are some of the high risk factors and i ticked every box: history of mental health issues, did you have a traumatic year leading up to hospital (yes i did - i had a breakdown due to being peri-menopausal) were you taken to hospital in state of delirium (I was - i don;t remember being taken to hospital), and were you in the ICU unit for more than 5 days (I was in there for 7). But none of this was taken into consideration. They were trying to put me to sleep at night - newsflash, when you are having a psychosis you are already asleep, trapped in the dream world but living in the real world. you cannot put someone to sleep when they are already still asleep and trapped in a psychosis (delirium). this just made me even worse. I ended up naked in a corridor on day 4 screaming like a mad woman in front of other patients, visitors, staff etc. and had to be forced onto a gurney and injected to knock me out because my untreated ICU psychosis had escalated over those 4 days and nights to the point where i thought i was mad, didn't know my name, and thought i had received a lobotomy (it all feels SO real, you experience the pain and madness as if it were for real - makes anything you have seen in a horror movie or a nightmare tame by comparison). NHS needs to stop gaslighting patients and their families and they need to start listening. i have been very very alone during my recovery. i will never be admitted to a hospital ever again - like i said would sooner die thanks. There has been no support group for me to join, no other survivors of ICU psychosis for me to talk to this about - the lack of support on this has been truly shocking and a real eye opener for me. i had no idea patients could be SO mistreated and traumatised from being in hospital by not being looked after properly. i have been incredibly lonely this last year. i used to be sociable, go out a lot - i do none of this now. before this happened i had never heard of an ICU psychosis an yet 1 in 3 people have them. The hospital and staff i was abused at refused to listen and i was treated less than human - i still feel less than human now. only reason i have not topped myself is because one of my best mates got cancer last October so this stopped me. such a weird situation to be in - he is scared of dying and i couldn't give a toss if i died. if i went to sleep tonight and died in my sleep - this would be bliss for me. As it is i am fighting hard and trying to be there for my mate and support him.

[Sepsur]

have you been offered any help for the trauma you have experienced ?

ICU delirium is terrifying for some of us - it has always amazed me how misunderstood we are as a patient group - especially by those looking after us.

[Jaly234 in reply to Sepsur]

i had to wait 9 months of my GP constantly referring me for mental health support. i had 10 weeks of CBT but in all honesty it has not really helped me a great deal. i agree though that not enough is done to support victims of ICU delirium - mainly because clinicians do not want to listen and learn. From day 1 they should have been telling me and got my family to keep telling me over and over again to wake up because i was trapped in a horrific dream world that was traumatising me but the ignorant untrained staff just made it worse. They even took me off my high dosage of sertraline i had been on (against the wishes of my family who felt powerless) and once discharged i went into a serious mental health decline for months - you should NEVER stop sertraline like that. in January 2023 my GP put me back on the sertraline - i am now on 200mg but i am still in a lot of physical and uncomfortable pain from the surgeries. it is my anniversary of almost dying and i feel SO LOW but there is no proper long term mental health support unless you have money to go private, which i don't sadly. 1 in 3 people suffer from ICU psychosis and i am stunned at how few people know about it and how damaging it is. Clinical staff are completely ignorant and do not give a toss basically. i was discharged horrifically but lucky enough to have a decent GP who had to pick up the pieces and were disgusted by how i was treated and very angry the hospital staff stopped my sertraline suddenly AND told me i never needed to be on it in the first place - they gaslighted me and made me believe i did not have a history of mental health issues. For weeks after being discharged i was so confused and telling friends and family i didn't have a history of mental health issues. it took weeks for my GP to explain to me this was not true and they had to go over my medical history with me. they could not believe that the hospital staff had done this to me and my family.

[Sepsur in reply to Jaly234]

I ditto what Rhyl1 has said and am part of cc-sn.org

[Rhyl1 Partner Moderator ICUsteps]

The experience of ICU delirium is extremely frightening. There are a number of ICUsteps support groups around the U.K. where you could talk to other patients who have had the same experience, see icusteps.org/support/suppor.... The Critical Care Support Network (formerly ICUsteps Chester) runs a drop-in support group on Zoom every Thursday evening at 7:30 pm, see cc-sn.org/drop-in-meetings. You can also refer yourself to PTSD talking therapies, see the website everyturn.org/talking-thera....

[Jaly234]

thank you so much for providing this - i will check this out

[ScabbleMe]

If you haven’t already, you should join the UK-based support group run by Critical Care Support Network. We have weekly meetings for people who need support after an ICU stay. Many of us, myself included, have suffered through severe ICU delirium. I could have written what you wrote almost word for word. Don’t give up hope. It can get better but it sometimes takes a long time. You can reach the group at: cc-sn.org. The weekly Zoom drop in meetings are on Thursdays.

[Jaly234]

i have made contact with them and they have provided me with weekly Zoom drop in meeting details. many thanks

[CarbonDioxideExhaler]

Madam it happened to me. Just the part of constant nightmares. I had about 5000 coma dreams so I can sympathize. But you don’t want to die because on the other side you have no say… so turn on some music you like. Breathe and calm down. Time will heal you. Sleep with lights on if you have to. The memories will fade away.