Help with support about seeing the room you was in ICU
Hi. I was ICU for about 7 weeks and most of it I was in Coma. I have terrible memories of it and wanted to speak to someone about it. I am going through the hospital support but it’s very slow moving. I do want to clear my head but I feel that it’s taking time and rewinding backwards instead of moving forward. I was in hospital in September last year and was discharged January this year - it was a long time and battle with everything I have kidney failure both kidneys and currently undergoing dialysis 3 times a week.
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I definitely know what you are feeling. My son was in ICU for 7 weeks and 5 days. i was with him . Both he and i are having frightening flashbacks of events that happened . I had to walk into that hospital that weekend and it was really hard. Luckily my son is getting weekly cognitive behavioral therapy to deal with his emotions . I think we both have PTSD. For you- what you are experiencing often happens to people post ICU and there is some reassurance in knowing that your response- though really difficult- is “normal”. My son feels that weekly therapy is helping so maybe you might want to try that too. I was not the patient, and it is certainly harder on the person who is sick , but i think loved ones need some support too. It is really hard. You put all that energy into recovery and you still feel emotional pain. I wish you all the best .
Hi thank you for getting back to me, I am going through therapy too, it’s every 3/4 weeks a time. My next one is 19th April. The only thing I’m having with that is I say everything and makes me feel better but when I finish I get this feeling “I’m back here again” I think if I mention on changing location for my therapy may help me on this one. That’s the last thing I would like to do is keep meeting appointments at the same hospital where I was admitted. But I will mention this to them and I hope they move me
Hi2 years on and I haven’t been able to revisit my ICU. That C word has prevented it.
I got a lot of support from a charity critical care support network. For the last 2 years they have provided weekly support groups for relatives on a Tuesday evening and patient + support on a Thursday evening. In addition they run regular exercise classes, at all levels and centred on the individual. On top of that there is yoga, relaxation and other mindfulness groups. This is all done on zoom and without charge.
I was in hospital care for 7 months in 2020, including 4 weeks in ICU and then a further 10 weeks in ICU with Covid. Soon after leaving care I had a follow up call with ICU but perhaps it was too early as my experience had not really sunk in.I have more recently spoken to a physio who did see me in ICU when I was on a ventilator. She said that the usual follow up program her hospital had , had been put on hold due to Covid and it was not possible to bring patients back to the ICU to show the equipment etc used in their treatment. They were proposing a separate clinic with an ICU doctor, physio and physcologist, but have not heard any more on this.
One thing that did help my understanding of events was to get my hospital notes, with the daily clinical notes and results. In my case these filled two lever arch files. I also was given two discs of xrays and scans and other records, but as I am not a radiographer they looked a bit of a mystery.
I have been back to the hospital for other follow up treatments but not to ICU.
Hi thank you for getting back to me. Yeah your right with daily notes and messages left in the diary held at the hospital. There is one for me and I have that also. I did go through it with the therapy people one of my sessions. I did find that interesting but I personally didn’t get much from it as the notes I have are from when I was taken out of coma. Not when I was in coma? It’s a strange one as to why? Most of my memories and brain flashbacks are when I was in coma. I have voiced what I have they are clear dreams. But nothing is making sense. I have asked several times for myself to be taken into the ICU ward and the rooms I was in. My dreams have images of robots, people crying - I hear my mum crying. Things like I have 6 weeks to live? (Frightening) I’m just scared of it and want it all cleared from it.
I think the diary is something different. I obtained my hospital record from when I arrived in A&E, right the way through all my time in ICU and other wards. Contact your local PALS and they will I am sure direct you. I did not do this until the summer last year, and bucks health had an admin dept that provided all my records in less than 2 weeks.The delerium you experienced is very common, and I had it both times I was in ICU. The dreams were very vivid and it was like living in a parallel world. I was in various countries, often in strange hospital settings, and often with people I knew. In my second stint the dreams were more violent and scary, with people dying or others trying to kill me. I see in my notes that I did try to get out of bed on occassion and that reflects the dreams I was having at the time. The dreams stopped once I came round in ICU and my nurse told me I had been in the hospital all the time. I was given an anxiety tablet for about 3 months but once home my gp stopped me taking any more and this had no effect. While the dreams were bad, I do think it was a good way of staying alive rather than just drifting off.
My family thought I had gone mad as had talked to me on occassion during these episodes. My sister had kept some notes which are quite amusing to see what they made of the things I was saying.
I am lucky that although I remember most of dreams they do not trouble me now, and unlike others I am not haunted. I did a PTSD test and dont have this. My issues are ongoing physical effects eg CKD, Diabetes type 2, fatigue, and I still need a walking stick.
Your experiencs sounds similar to mine although my physical recovery has gone remarkably well and I now live a relatively normal life with some fatigue issues and occasional flashbacks. I am receiving treatment for PTSD and have found talking to family, friends and work colleagues helps me a lot. I try to make light of my horrible experiences which feel real and totally diffrent from a dream, the fact that I thought the hospital was under attack and I contacted the police o my mobile phone gives others a laugh but that's what my drugged up brain interpreted 5th November 2020 as.Striving to achieve that last bit of recovery and relishing life as much as I can, I also remember several dark forks I'm my road to recovery where I could have so easily taken the easy route and chosen death but I am a fighter and stubborn to boot so that never really was an option. Still experiencing flashbacks but my coping strategirs work well now.
I call them dreams as its easier to explain to others, but yes they were nightmares, and felt very real at the time. I kept going back to the same locations but with either different storylines, or picking up from where they had previously left off.
Your dreams sound so similar to mine its scary , they were so vivid its hard to describe ,I didn’t know you could get your records and I will definitely do that
Yeah if you ask the consultant or your GP maybe able to request a diary. With myself they had a Diary where any nurse/doctor or visitor came, they wrote inside it. It could clear a lot of information held in our brains but my case it hasn’t done much. It’s a hard one because your sedated and they can’t see what I’m going through so they can’t see as it’s myself going through it. They just seeing you sleeping there and ensuring all machines are working around you. I woke up on a bed with loads of machines and a tracheotomy I couldn’t even talk or say anything I started to cry.
Your hospital record is more detailed. Every nursing shift is written up. All the tests are documented. You can see when you were on a ventilator. Radiologist reports are included as well as the images. Your hospital PALS should be able to direct you to the right dept.
HiIt’s good to read on here that that the delirium and agitation are common my nightmares were vivid and scary but I have one constant that I cling to that when I was having the worst dreams a young girl who was American/oriental who said she was training to be a nurse (in my nightmare I was in America) and she would help me and talk to me and she is about the only good memory that I have of the 4 weeks I was in a coma for.
I don’t know if she was real or imagined.
I was there during lockdown so I had no visitors and no one to give me any feedback of what was actually going on during my icu stay.
Unfortunately the hospital were not very good with emotional support (non existent)
The first memory of being awake was on the hd ward I woke up had a trachy so couldn’t talk a feeding tube and had no idea of what was going on the nurses just treated me as a patient and didn’t tell me anything of what happened.
It was only after I had the trachy removed and was able to talk to my wife that she told me I had been in the icu for 4 weeks it came as quite a shock and was and is, some 2 years later, difficult to come to terms with.
I did get a full set of notes to try and plug the hole in my memory and they have helped but I do find that missing time difficult to cope with.
Hi it’s sound like similar to myself my coma was a bit longer however they did try to take me out of it. But I have clear images of it and then they was in my dreams. I have asked questions but nothing seems to be clear? Only thing my psychologist has said is that The room in ICU I was in, does match the room the dream I had I describe the room setting.
It is awful experience to have this type of memory I’m just trying to connect it all and clear as much as I can.
Hi. I was in ICU in April 2020, and like you and many others, struggled with both recovery and memories of the experience. I host a zoom based peer support group for people who have been in icu and their families. We meet fortnightly at 7.15pm and our next meet is on Wed 13th April. Others run similar support groups too. Finding out your experience is a shared one is really helpful. If you would like me to send you more info on the group, then you can privately DM me your email address on this site and i will send you more info. Good luck in your recovery, regards, Pete
Hi thank you for getting back to me, that would be useful for me and will help me but I have dylasis Monday Wednesday and Friday evenings. Is there any other dates apart from the Wednesday? Thanks
I have to say I'm a little surprised at the amount of people on this forum who comment on ICU delirium.Many appear confused as to what was going on during the period in which they were under intensive sedation or induced coma, and why it was happening.
I am not in the UK but in South Africa, so I'm unable to comment (or have any experience) as to how clinicians, or to what extent they inform patients as to what may lie ahead. No doubt conversations are had around risk and prognosis, but it seems to me there is little counselling on the mental or psychological challenges that may lie ahead.
In South Africa, patients receive some basic counselling around ICU delirium beforehand, often accompanied by the patients writing notes to self (to expect having had bad dreams / hallucinations etc) to be read when out of sedation.
This seems to help a little with understanding delirium when fully awake and conscious again.
I'm certain South Africa is no groundbreaker in terms of advance counselling. This practice was probably adopted from elsewhere in the world.
Do ICU clinicians not provide advance counselling in the UK?
If not, it may be time for some group to lobby for advance counselling as part of clinical practice.
Over and over I read posts on this forum from people bewildered by their experience and finally gain some understanding from others here who have walked that road.
Mental and physical well being go hand in hand, but it would seem the mental well being is not given the attention it needs.
To those who have been able to provide advice and experiences to others, you are doing stellar work in helping others understand their journeys.
That is an interesting comment. In my case I didn’t know that I was going into ICU. In fact I have lost my memory for approximately 3 months before going in. Obviously I have no memory during the coma other than my life in another world. I was involved in preparing some teaching materials for medical staff to make them familiar with ICU’s. We then adapted it for patients and relatives. It’s an open resource e-lfh.org.uk/patient-and-fa...
Hi. It might be difficult to advise patients what they might expect. In my case I was admitted as an emergency and was out of it quite early. I remember arriving at A&E but not much more until I came round in ICU, by which time I had already had some vivid dreams. After recovering enough I was on a general ward but contracted covid and readmitted to ICU where my condition deteriated quite quickly and again was out of it for about 4 to 5 weeks during which time I had much more severe delerium. However unlike some others I am not haunted or have ptsd as a result. My nurse told me I had been in hospital all this time and that kinda brought me back to reality. I was given an anxiety tablet for a period of time but as soon as I was home my gp decided it was not required. I did speak to phsycologist once in hospital and once after returning home. I do appreciate others suffer with after effects of delerium quite significantly, but for me I took the view it was a way of staying alive rather than just drifting off. I still have clear memorary of the dreams but they dont haunt me. The physical effects of being so ill with Sepsis and then Covid are more of a concern.
Just to add: prior to discharge I was visited by two outreach nurses who said they had seen me prior to surgery, yet I had no recollection of them. I was in hospital undergoing scans and tests for about 24 hours prior to surgery, but apart from hazy memories of being in an ambulance I have no memory of this entire period.
Hi thanks for your reply, yeah I think it could be a great idea to have advanced therapy only thing with that could happen is the individual may be focusing on getting in and out of it that than the actual process of it. It could work only some people who could have had a minor surgery or illness than someone who has been in for longer period. I think bigger cases it may not help the advance therapy maybe the small cases. It’s a tricky one.
I see a few people have mentioned not being able to visit ICU because of covid, which is a shame. I visited a few months after my discharge and it was an extremely helpful, cathartic experience. The bed space in the corner of the ward was unoccupied and it was poignant to look at that empty place where I had been fighting for my life; it was both familiar and yet different from the place of delirium and dreams. It was also emotional to meet and thank some of the nurses who had been looking after me; painful for me too, as I was unable to remember them, but they understood. The hospital I was in had dedicated ICU outreach nurses, so it was easy to arrange the visit. I hope you have some success in arranging something that will help. Best wishes.
It would be great to meet some of the ICU team in person to say thanks for all the care given. I have spoken more recently to a physio who looked after me when I was on a ventilator, but was not able to place her. Some of the doctors and nurses I would remember by face if I met them, but not their names.
When I visited there were a handful of nurses on duty who were involved in my care, but I had no recollection of any of them. There was an off-duty nurse I vaguely remembered, she was caring for me during my final few days in the ITU. There are a couple of other nurses in my memory, but the 31 days I was in ITU is a period of vague recollections.
Seems we have had a similar experience. I remember the name of my first nurse in ICU, and she came to see me again in my last few days in ICU. Best I have done is send a xmas card and chocs to the ICU, and made a few small donations to the bucks health charity, but it would be good to meet them at some point.
I’m trying to meet the people who cared for me in ICU too and say thank you. I’m visiting the hospital on 19th April as I have 2 follow up appointments on the day. Hopefully the therapy team will allow me to go. I have asked to go in. But was told I can’t due to Covid restrictions. My dreams had the nurses In them too. As they did try to take me out of sedation but i wasn’t well enough so they put me back into it.
I had similar ones too. I did have white mits on my hands as I was trying to take everything off. But they wouldn’t so the best way they can carry on with any procedures was to keep me sedated and in few of my dreams I felt being tied up onto bed. I did see in the diary notes about the white mits on my hands (bit like a boxing gloves on) and I also had nurses in my dreams
We hold a drop-in on zoom every week 19.30 Thurs BST - you would always be welcome, it’s not a huge unwieldy meeting, you can say as little or as much as you would like.Coming to terms with what we have all been through takes time, speaking with others helped me.
I felt like I had no understanding of what had happened to me and my body while I was in a coma...where had all the scars and needle marks come from and what were they there for? Did the staff I remembered in ICU really exist or were they part of my very weird and "trippy" hallucinations. My GP was very proactive and put me forward for Talking Therapies which did help but it was a long wait. I also had specific ICU counselling which really helped as they could reassure me that how I felt was totally normal and a visit to the ICU ward really helped.My ICU also has a patient support group that was set up maybe the hospital you were at has something similar?
It has been 8 years since I very nearly died from H1N1 and I do still have some flashbacks...I am not so good going to a dentist anymore and certain noises can act as triggers but not so much anymore.
Do you have anyone at home you can talk to? I found talking to family & friends helpful once I explained that I needed their help to piece things together - I found that talking really helped me to work things through.
Hi, thank you for your reply. Yeah I do have conversations with my sister and mum dad about this. There are voice recalls I have my mum crying in my dream saying I have “6 weeks to live” It’s scary to ask my mum this. It’s not a good experience I have shared this with psychologist and they have said it’s not true at all. It scares me a lot and other frightening dreams such as seeing drad family members comming alive. But it wasn’t a good dream at all. It’s hard for me to open up things like this to close family members. It’s upsetting for myself. I just want to clear it.
I definitely do think the room I was in will help me a lot. I’m just waiting for hospital to give me the go ahead.
One of the most vivid hallucinations I had was of my now husband being dead and underwater. I also used to dream that I was trapped in a box or that I was in a crazy and brightly coloured room where the walls kept moving as soon as I was close to reaching anyone. Your body has been pumped full of a range of drugs and your brain has been put to sleep so you are basically going through a re-boot as well as getting rid of all the drugs.I talked all the time as it was a way of helping me understand what had happened and when...do not feel you can't talk to your family after all, they were dealing with this while you were in your coma.
Ask your Mum if the "6 weeks to live" was real or just part of a dream? I kept on imagining I heard people calling my my name and stroking my arm...I discovered that was real as they tried to bring me out of my coma twice.
The flashbacks and dreams do get better but at the moment you are still in the cycle of post discharge treatments. When I woke I had a kindle I could read which gave my mind something else to focus on and as they switch off if you don't a page you don't have to worry about switching a light off!
Yeah Sure I will ask her it, it has been over 6 weeks but it was just all scary that I heard this clear. I also have myself saying switch everything off and I want to end. I kept telling them this but Nurses wouldn’t listen. I have asked them this and nothing has come through but they have a note about me saying this. And yes it’s true. I want to clear as much
If you go to e-lfh.org.uk/patient-and-fa... you will find a link that takes you round an icu bed choose the patient optionOn a Thursday evening cc-su.org offers a zoom support group where if you want to you can talk to others who have been through icu including long periods in a coma
Hi thank you for this information. It bring lots of memories back the link does. I will be on the next Thursday evening zoom meeting definitely. Thank you.
Hi, I’m new here. I was in a coma for a month in October 21. I had the weirdest, craziest journey(dreams/memories). Thank you so much for this. I’ve just had a look around the bed via your link. It’s helped me enormously.
Concerning pre warning of hallucinations and delirium. I was never expected to end up in ICU. It was as the result of a postoperative blood clot in the heart which really wasn’t meant to happen. I suspect that had I been prepared for ICU I would have been really worried and felt that it was probably going to happen. That being said the medical staff were incredibly good at dealing with my ramblings helping me to come to terms with them and finally recognise them for what they were. Although I do wish some of them were real I still recall many of them but they don’t haunt me at all.
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