I've been reading the information and advice for relatives on the ICUSteps website and one of the things it suggests is telling a patient "You are in hospital and you are safe".
Thinking about it, I'm not sure that is actually going to be reassuring.
If someone told me that a friend was in hospital my first thought would be that something bad had happened, an accident or serious illness. It sounds like bad news, not good news. Someone in hospital must be in danger or they wouldn't be there in the first place. Being in hospital is only good news if you knew someone was ill and were worried about not being able to get them there.
When I was in ICU I know that hospital staff repeatedly told me I was in intensive care, but in my drug-induced dreams I was not ill, and being in hospital was all a mistake, so it just confirmed the dreams. And in my dreams, it wasn't a real hospital, and the nurses were not really nurses. It certainly was NOT a safe place. It seems to be common for ICU dreams to be about hositals that are not really hospitals.
As far as I know, no-one told me what was wrong or what had happened. Even after I came round, no-one told me that I'd been on drugs that often induce bad dreams/hallucinations. It wasn't until someone said the name of the hospital that I could recognise that everything up till then had been a dream.
So what do I think the advice should be?
I would suggest assuming that they can hear what you're saying, and explaining to them that they have been ill, or been in an accident, and telling them what has been wrong with them and which hospital they are in, and, if it's true, that they seem to be getting better. If they seem to be suffering "ICU delirium", tell them they've been given drugs that might give them bad dreams, that they've been having a nightmare . say (a grown-up version of) what you'd say to a child who woke up screaming in the night. (Particularly if they do wake up very distressed)
I know everyone is different, what do other people think? When you woke in ICU, did you know how ill you'd been? Did knowing that you were in hospital sound like good news? How long was it before you understood about "ICU delirium"?
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Kit10
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i was aware of ICU delirium and other forms of delirium prior to going into hospital i worked as a nurse. It did not help me much i still had the full experience of delirium including thinking i was in canada and had been mauled by a bear.
For me it was reassuring to know i was in hospital i then knew that there were medical professionals around me and that my family were there (and it was nice to know i hadnt somehow ended up in canada) i know for older people this is less reassuring to be in hospital though.
I had a similar experience where I was repeatedly told I was in "place name" ICU but I didn't believe them. I didn't remember getting in the ambulance or anything because of the drugs - I just knew that they were keeping me there and that I couldn't move. At first I thought it was a recurring bad dream but then after I woke up a few times, I believed they were holding me there against my will and it was terrifying. So, like you, I have thought about this a lot. I believe it would have been better had I been told by one of my family, rather than a nurse, and given some explanation such as having double pneumonia and that I was on strong paralysing drugs because I was ventilated. Some explanation about why I couldn't move would have helped as well.
Anyway, I had a lot of delirium on and off the whole month I was in ICU and most of my "dreams" after that initial scare were fairly innocuous. I did eventually realise they were dreams - especially ones where I was travelling all over the world! - but the dreams where I was just experiencing a different reality but still perceived I was in ICU were quite confusing and took some time to understand which were dreams and which were not (couple of months). I have heard some other patients who had terrifying dreams the entire time they were in ICU though, and were still struggling to separate reality from dreams many months later. No wonder we all suffer from PTSD.
I’ve always used a term that when it comes to my time in ICU, I am a fairly unreliable witness. I really don’t know what was said to me, how frequently or in what context.
Firstly, whilst I had delirium, if I was told something I always assumed it was a lie or I promptly forgot it, so I don’t think the claim that ‘I was in a safe place’ was said in any other manner than to assure me that whatever my head was saying was going on, the reality was that it wasn’t happening as I imagined. No-one in ICU was underplaying that we were all fighting for our lives.
Secondly, I was in a much safer place with 1 to one nursing ration than the general wards or being at home being as profoundly sick as I was.
after coming round from icu. My surgeon told me that things had gone Wrong after my operation, was technically dead and had been resuscitated but all I needed to know was that I was alive and would be all right and all would become clear in time. After that every day at least one I was asked where I was and having thought that I was in he West Indies, Holland , Germany, Tripoli New Zealand at different times it took a bit of convincing to me persuade I was in Basildon and never been anywhere else. And this was explained firmly without compromise. And I was handled absolutely correctly although it didn’t feel like it at the time.
First of all relatives need to know that you are in a safe place. They also need to know that they are doing something to aid your recovery. All sorts of things might be suggested and in some respects it doesn’t matter what effect it has on the patient because it’s doing good for the relatives.
In my case whilst in another world I traveled through different times, visited many countries, had all sorts of experiences, was kidnapped by staff etc etc. I think I can recall at odd times when they were trying to wake me up and I was temporary with it I was asked where was, what and time it was etc. I understand why it was done - to ground me.
Once I had come round and I was taken for a “push” round the hospital I was still convinced that I was in the motor museum. Stroll just emphasised for me that I was right.
There is on question that I am asked by relatives that I find difficult to answer. It is clear from what they have said that they think they communicated with me - both ways - but I have absolutely no recognition of this, what is more it would have been very difficult with a trachy in place.
If I had been told I wasn’t in the Arabian dessert I wouldn’t have believed them any way because I was in my own world.
For me i don't think it would have mattered to me LOL....it would have just deepened the conspiracy dream...but talking about the hospital gave me some flashbacks now...i was put on a special floor....underneath the hospital cause i wanted to escape.i was there for a week. i still have the scars on hy arms and legs from trying to break the rope i was tied with. that one was terrible.....the rest of the dreams were cool and i often revisit them in my head. i was only in ICU for 2 weeks though. Afterwards i chatted to everyone in the dreams just to establish if they were real or not. then discard them as dreams. So don't know if it will work....? I prob had 30 visitors.....but only remember 4 or 5. and the visits were confirmed with family and friends. But yeah, diff for each person i guess. It was ok for me but i saw how much trauma my fam and friends went through. That is the worst part.
It is an interesting one. When I finally came off ECMO and out of my month-plus coma in ICU, all the terrifying week-long prologue in the run up to it (when I was struggling in another hospital's intensive care unit), had completely gone from my memory banks.
It was a sunny day, and - because of my coma dreams - I thought I had been on a long Christmas holiday with my relatives. I initially felt quite content, thinking the hospital bed was a hotel room, or a cabin on a boat or train.
I was startled to find myself in hospital, and was immediately suspicious of kidnap, who are these sinister people, I demand to go home etc etc.
The nurses put my family on the phone and they did not say I was "safe", they said "you have been really unwell"... which my baffled brain sort of finally understood and it did get through the mental confusion, looking back.
The word "safe", would have triggered the paranoia, which actually came later in waves accompanied by a month of waking delirium.
Also, the word safe to me raises the horrible issue of the contrary "unsafe" - and the conspiracy-minded question to oneself "why wouldn't I be safe?! what are trying to do to me?"
The idea of a patient being tied to a bed with rope is to me shocking. This is the 21st century. That strikes me as barbaric. Two years ago I had no idea that things like that went on in this country these days.
Sure I understand the reasons, but even soft straps with velcro would be bad enough.
Is anyone trying to find some alternative form of sedation that doesn't cause such horrific nightmares that people, people like us, have to be treated like that?
Hi Kit, well it was rope with a piece of cloth...almost like tent canvas. So that was meant to protect the skin but it really did not. will see if the family has some pics i can share. I can tell you it's not the nice soft woolie and leather straps like the movies hahaha. and then this is africa....but the hospital should be comparable to most international ones. was really expensive.
If I may, to sum up what I think's been said so far (and on other threads) about advice to friends/relatives:
1. Be assured, your relative is in the best place they could be for someone so ill.
2. It is bound to be a difficult time for you. Look after yourself. Eat and sleep as well as you can. If possible, find someone to talk to about your worries. You can ask questions, or just talk as much as you want, here on ICUSteps.
3. Everyone is different, so it's hard to say what's "normal", but don't expect instant recovery, it can take weeks, months or even years to recover from a stay in ICU.
4. It can take 2 or 3 weeks for sedatives to wear off and for the patient to start to respond to being spoken to.
5. Keep a diary of what is happening. Include things the patient talks about, even if they seem weird. It will be very helpful to them later.
6. Read what you can of the information and old posts on ICUSteps, so you understand what is happening to the patient, and what a difficult time it is for them.
7. Just because the patient is unresponsive, doesn't mean they are experiencing nothing. It is very likely that they are experiencing "ICU delirium", which is the result of sedative drugs, and is a mixture of bizarre, often terrifying dreams, hallucinations, and bits of reality that get through into the dreams. Even if they were conscious when they went to hospital, they may not be aware of how ill they have been. It is common for patients to dream they are in some sort of hospital, but where the nurses are hostile, or that they have been kidnapped. It is common for them to wake very confused and disorientated. If they have been dreaming that they are in danger they can wake up wanting to escape, or being aggressive and even violent.
8. You can help by holding the patient's hand and talking to them calmly and reassuringly. They may not hear you, they may not remember, they may be so deep in their dreams that they don't believe what you say. But they may be able to take it in, and are more likely to believe a relative that they know than medical staff that they don't know. They may forget what's been said, so be prepared to have to repeat yourself.
9. Tell them that they have been very ill. Tell them which hospital they are is. Tell them what is wrong with them and what has been done to them. Tell them that they have been given drugs that cause bad dreams. Reassure them that the bad dreams will pass.
10. Reassure them that their house, pets, children, bills, valuables, car, clothes etc are safe and being looked after (and arrange for that to be true!), and bring them any glasses, hearing aids etc that they need.
10. When they do start being responsive, talk to them about the date, weather, seasons, news, family news etc. to help them reconnect with reality and escape from the delirium dreams.
11. As soon as they can, go through with them the diary you kept, so they know what has happened and can start sorting out what was dream and what was real.
12. Bring them things to help with looking after hair, teeth, nails and shaving.
Is that a fair summary? Have I missed anything?
Oh, and tell them about ICUSteps, so they can come and talk to others who've been through the same as them.
thanks so much for this - really helpful and reassuring that I’m already doing a lot of these. I tried 11 but my husband got a bit agitated when i pushed too much that some of his hallucinations aren’t real. I will try again but please do let me know if you have any advice based on your experience. Thanks so much for sharing here, it helped me a ton
I'm glad it helped you. If anything I've written has helped just one person it was worth the effort. I'm afraid I don't have any relevant experience about going through a diary, as the hospital I was in weren't doing ICU diaries and I had no relatives doing it either.
Some of my memories are clearly so weird they can't have been real, some could have been real or a bit of reality mixed up with hallucinations but I still don't know for sure. Some are trivial, so it doesn't matter whether they really happened or not. Maybe if he talks about what he remembers he will be able to work out for himself which ones can't be true.
I still get cross about being contradicted about things I am sure were true. For example, I've lost count of how many times I've been told I must have had a nurse 1:1 - no I didn't, it was 1 nurse to 2 patients because of covid, and I was alone a lot of the time. And no, ICU staff cannot all lip-read, some had been on the course but really couldn't. So my advice would be - only argue if it's really important, if it doesn't really matter, let it go.
Yes it is an interesting question. In our case I felt it was better to tell our relative that they were in the hospital in ICU but its up to each family to decide what is best . Definitely the advice about making sure relatives look after them self is essential as when a loved one is in ICU it is a very worrying and stressful time for all family members. In our case Unfortunly our relative didnt make it in the end .
It's difficult to answer this one. I knew I was in a hospital because most of what I saw was in the hospital. When I went to visit where I had been a few months later, I recognised it, although it was quite different in many ways, as you would expect.
My wife visited me a few times. I was in two different hospitals and oddly, the first allowed her to visit and the second didn't. When I did see her, I was really freaked out, because at that point I was in a very different world and could see her in another world but couldn't reach her.
A major theme of the second hospital was my trying to escape to be with her. In my mind most of my loved ones had died, but I knew she was still alive.
What I think might have helped would have been if they told me that I was on drugs and they were causing me to think the way I was. I was so convinced of my alternate reality and I think that was most of the problem. Nothing was telling me that this stuff wasn't supposed to be happening.
I was out at the pub with one of my friends the other night. I've mentioned this here before, but he has also had the intensive care experience: 111 days! when he was 17 after a serious car accident. His experience was quite different from mine as he was in Germany. He was tied to the bed and according to the doctors here (when I re-visited) it's not common practice in the UK to tie people down but as mentioned by someone else it allows the sedative dosage to be reduced so some countries do it. I did have the heavy mitts on and I managed to get them off and remove my feeding tube. I regretted that.
My friend was also on Morphine and he reckoned he had bigger problems from that, or at least coming off it. Which reminds me; I was thinking about that scene from Trainspotting with the baby on the ceiling (for those who've never seen it it's when the protagonist is coming off heroin and is hallucinating). When I watched it, like most people I thought it was horrible but now all I can think is "Ha. That's *nothing*".
During my recovery I have found talking about it to be really helpful, especially here where there are others who can relate. It's also great that I have a personal friend who can relate so we can joke about it. A year ago joking would be the last thing on my mind.
my first stint in ICU I thought I was in a funfare, an airport, on a plane, going to a doctor in Russia, and a nurse coming at me with a big needle saying she had to save my life. In between my actual nurse kept saying I was in a hospital , a very good hospital.
My second stint in ICU the delerium was much worse and very violent.
I have not been back to ICU to visit as my hospital's usual follow up was suspended because of covid. I have though spoken to some that treated me and I have my clinical notes and diary that pieced together the time lines and what actually happened in my 14 weeks in ICU.
It seems, from what everyone is saying, that it is very helpful to know as soon as possible that you have been given drugs that can cause hallucinations. Hospital staff and relatives need to be told this. Is there anyone reading this who can pass the message to hospitals?
And I should add to the list of advice to relatives, to advise/help the patient to get their ICU diary and/or records from the hospital.
Can anyone reading this get the advice to relatives on the website updated?
My experiences include:
Someone said, "Welcome back, you've been somewhere very cold." Or maybe that was a dream. I was told I'd had hypothermia, after I'd completely woken up.
I asked a nurse to get rid of the spiders on my bed. She said (rather coldly), "There are no spiders," but said nothing about hallucinations. Or maybe she was a dream.
A nurse laughingly told me "You've been having vivid dreams. " Ithink she was real. When I asked "Why do you say that? Have I been talking in my sleep?" she didn't answer.
It wasn't until months later someone explained about drug-induced hallucinations. I often have vivid and strange dreams, I thought it was just me having stranger-than-normal dreams.
When I woke up asking "Where am I?" and was told, I asked "How did I get here? I was in Wales," he said, "Were you? You were in a hospital before?" as if he actually believed me.
(Some people get to travel the world in their dreams - I got a slate mine in Wales! Where's the justice in that! 😆 (Nothing against Wales, just against that particular imaginary hole in the ground))
When I asked what had happened and what was wrong with me, they started asking me questions about did I remember falling at home? did I have a history of epilepsy? (No to both) The difficulty is, no-one knows what actually happened, and they never really found out for sure what was wrong with me.
No-one explained that I was being fed through a nasal tube, until I asked for food. (In my dreams the thing taped to my cheek was a sort of microphone to help me speak.) No-one explained that they'd put in a catheter until I asked for the toilet.
When I (much later, with help from PALS) spoke to the matron and suggested that because so many people suffer delirium they ought to routinely help people recover from it she said, "Well, some people do," as if it was so rare they didn't need to bother about it. Yes, the ICU matron didn't think ICU delirium is a big problem.
One of the first things I asked for was to talk to some kind of counsellor because I realized I had been traumatised. 20 months, and countless assessments, later I am still waiting. Actually, I have given up waiting, I have done DIY EMDR, and seriously doubt whether the people whose queue I'm in are ever going to be any help to me anyway.
I went to a counselor for many weeks - paid for via my health insurance (not sure I'd get it on the NHS). We had some very nice chats about psychology and the way the mind worked but ultimately I realised that it was my own working through and piecing together the flashbacks along with the imagery I saw and the reasons behind it.
Reading others' experiences here did help a lot but ultimately I'm the only one who knows what's going on in my mind. I did have to confront a few issues I had - you know, the sorts of things which you put to the back of your mind in the hope that they will go away.
In a way, that was a positive thing because you can't just sweep things under the carpet forever. I know people who have done that their entire lives and it hasn't helped them.
Your mind and your subconscious are strange as they aren't tangible things. However, the experience of losing control of them and then regaining it has been quite a learning experience for me at least. It's also led to deep sadness for my late mother-in-law who had severe dementia for a decade. I lost my mind for a matter of weeks and it pains me to think what she went through. The fact I can empathise with people who have gone through severe mental issues does remind me how fortunate I am to have come through intact. While what I went through was terrifying, not to mention the brush with death caused by my illness, ultimately I feel fortunate. I nearly died, but I didn't. I lost my mind, but it returned.
Just thinking back to the subject, I've just realised that most of the people I saw, including medical staff, weren't wearing masks. Of course, they must have been. So I do wonder how many of them were fabricated by me and how many were real.
There are lots of posts from and in reply to relatives, but anyone new coming onto the site is unlikely to have time to read through them all, so I wonder if a list of the key points of advice would be helpful?
If I edit the list of advice above and post it as a new thread, could it be made a pinned post, to make it easy for relatives coming onto the site to find? It could be edited in future if new ideas come up in discussion.
If so, is there anything else that should be added to it? Or changed? Or deleted?
So far it all comes from former patients - is there anything to add from the relatives' point of view?
I didn't know I was in ICU, or that I had spent 3 weeks in a coma. I had tubes sticking into me and for reasons I didn't know, and I was on daily dialysis and having bloods and other tests taken a lot! I later discovered that my ICU Delirium was in such great detail that I had someone sat with me in ICU making notes of what I said! I knew I was in hospital but how can you tell someone they are "safe" when they have tubes sticking out of their arms and legs and on dialysis...I can tell you that safe isn't a way I felt! I wanted to know that I was on the road to recovery and that you were there to help me!!
I didn't know I had ICU Delirium, how many things had gone wrong or that my survival rate was as low as it was! I had no clue why some DRs were asking me if I had bought a lottery ticket, I didn't know it was because I was lucky to be alive!! I didn't find out everything that went wrong until I saw the consultant dealing with my lungs...6 months after I was discharged!
I compiled a summary of advice to relatives , so here it is:
This is a summary of advice to friends/relatives of patients in ICU. It comes from posts written by other relatives and former patients.
Be assured, your relative is in the best place they could be for someone so ill. Patients can recover from what may seem like hopeless situations. As long as the doctors think it’s worth continuing to treat them, do not despair.
It is bound to be a difficult time for you. Look after yourself. Eat and sleep as well as you can. If possible, find someone to talk to about your worries. You can ask questions, or just talk as much as you want, on ICUSteps.
Everyone is different, so it's hard to say what's "normal", but don't expect instant recovery. In the movies, patients may wake up and immediately be better, but that is not reality. It can take weeks, months or even years to recover from a stay in ICU.
Patients on ventilators are sedated so they don’t try to pull the tubes out. It can take 2 or 3 weeks for sedatives to wear off and for the patient to start to respond to being spoken to.
Read what you can of the information and old posts on ICUSteps, so you understand what is happening to the patient, and what a difficult time it is for them. Other websites you may like to look at are:
cc-sn.org/information
Just because the patient is unresponsive, doesn't mean they are experiencing nothing. It is very likely that they are experiencing "ICU delirium", which is the result of sedative drugs, and is a mixture of bizarre, often terrifying dreams, hallucinations, and bits of reality that get through into the dreams. Even if they were conscious when they went to hospital, they may not be aware of how ill they have been. It is common for patients to dream they are in some sort of hospital, but where the nurses are hostile, or that they have been kidnapped. It is common for them to wake very confused and disorientated, and talk what sounds like nonsense because the dreams are very vivid and seem real to them. If they have been dreaming that they are in danger they can wake up wanting to escape, or being aggressive and even violent.
Keep a diary of what is happening to the patient. Include things the patient talks about, even if they seem weird. It will be very helpful to them later.
You can help by holding the patient's hand and talking to them calmly and reassuringly. They may not hear you, they may not remember, they may be so deep in their dreams that they don't believe what you say. But they may be able to take it in, and are more likely to believe a relative that they know than medical staff that they don't know. They may forget what's been said, so be prepared to have to repeat yourself.
Tell them that they have been very ill. If it’s true, tell them that they are getting better. Tell them which hospital they are is. Tell them what is wrong with them and what has been done to them. Tell them what any tubes they are connected to are. Tell them that they have been given drugs that can cause bad dreams. Reassure them that the bad dreams will pass.
Reassure them that their house, pets, children, bills, valuables, car, clothes etc are safe and being looked after (and arrange for that to be true!), and bring them any glasses, dentures, hearing aids etc that they need.
Talk to them about the date, weather, seasons, news, family news etc. to help them reconnect with reality and escape from the delirium dreams.
It can also help to show them photos of family members, play their favourite radio station (e.g. on a tablet).
As soon as they can, go through with them the diary you kept, so they know what has happened and can start sorting out what was dream and what was real.
Bring them things to help with looking after hair, teeth, nails and shaving. Nurses are not allowed to cut patients’ toenails, but relatives are.
Advise/help the patient to get their ICU diary and/or records from the hospital.
If you think the patient is not getting the care they need, stand up for them. Maybe they have some other medical condition or disability that the staff do not know about or do not understand.
Tell them about ICUSteps, so they can join and talk to others who've been through the same as them.
I tend to agree here. I was repeatedly told by nurses I was in XXX ICU, but I also believed I was not ill and that it was definitely not a hospital and they were not nurses! I thought I was being held against my will. I knew I'd been drugged because I couldn't move. I think it would have been better had they said something along the lines of "you've been very ill with pneumonia but you may not remember because we had to give you sedative drugs. You're on a ventilator to help you breathe. The drugs make you sleepy and may give you bad dreams". Obviously not all in a rush like that, but I think that might have helped. Though, to be honest, I probably still wouldn't have believed them! What made it scarier for me was that most of my beautiful nurses were middle eastern or south asian and often spoke to each other in a language I couldn't understand - I live in a semi-rural hub that is a mix of caucasian, African and Indigenous people, so it seemed like I had been taken to a different country. They were all wearing the same blue outfit (obviously scrubs, but having never been in hospital, I was not to know that) and all the women had their hair up the same way. It was actually terrifying and very surreal. They could have been aliens for all I knew. So, I'm not sure what would have made me feel more relaxed, but it definitely wasn't "You are in XXX ICU".
An accident put me on a vent, in icu, with a med. induced coma for 23 days in 2020. This was right as hospitals were closing doors on visitation due to the covid lock down in the US. Thus there was no family member or anyone to "hold my hand" or help me using ICU steps. So.... Why doesn't the hospital staff help those w/o visitors? They have people with limited licensures that could easily follow some talk therapy guidelines while they're in the room changing your sheets. Or better yet... get rid of the damn drugs that cause the delirium! I had horrific dreams and hallucinations that would not stop, even after I was trached and off the ventilator. And, like others, where I "was" was not a safe place in my mind. Additionally I too was restrained, and had some sort of hospital mittens wrapped tight on my hands. I guess I was "very violent", so they had no choice. But whose to really say. It wasn't until 8 days later (after coming off the vent), that I finally understood I was in an accident and was at a hospital. But when I first "came to" (still waaaaay over sedated) the first words out of some white coat wearing woman was, "What are you so afraid of? Stop hurting my staff! You broke her finger!" This person was screaming angrily at me and I had no idea where I even was!! If medical staff dont know about ICU delirium then they need to know!!! Its just absurd, a terrible injustice and flies in the face of "first do no harm".
They. fried. my. brain.
I'm still struggling. Haven't slept in 2 years because of said nightmares. Trying EMDR next.
Interesting question you raise about "reassuring".
For the most part, a patient waking up in hospital may not immediately recognise where they are, or why and how they landed up there.
This could (pure speculation on my part) cause panic, with some patients unwittingly entering "fight or flight" mode as a means of escape and survival.
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My ICU Journey
Husband in hospital for 10 weeks
Oh how I wish I was signposted to this site 18 months ago
Hospital is giving up on my BF 
The nightmare that will never end.
