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Intensive care: Patients' experiences

Coming round and regaining consciousness in ICU

In intensive care people receive many separate medicines, including sedatives and painkillers, which can affect them in different ways. These medicines aim to reduce pain and to keep people calm or in a deep sleep so they are more tolerant of the tubes and equipment attached to them. Some of the people we talked to had been unconscious - one man described it as 'comatose' - for varying lengths of time. Some said they'd been looked after in intensive care for several weeks before they could remember coming round. Others were unconscious or sedated for only a few days. Here men and women discuss coming round in ICU.

Nursing and other medical staff usually talk to sedated people and tell them what is happening as they may be able to hear even if they can't respond. Some people had only vague memories whilst under sedation. They'd heard voices but couldn't remember the conversations or the people involved. Some had responded but couldn't remember any of these conversations once they were fully conscious, whether these had been with health professionals, family, friends or colleagues. Others recollected snippets of conversations they'd had between being sedated and fully conscious.

 

He vaguely remembered hearing about his prospective daughter-in-law's new job.

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Age at interview: 62
Sex: Male
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All I can remember was, of that morning of going down for the second operation when they were going to have a look at my stomach, was going down and talking to the anaesthetist about this and he said, "Oh we'll put a little..." He said, "You won't be long." He said, "It's only a minor, simple operation." And I don't remember much after that. Once you've had the anaesthetic, that was it. 

The next thing I remember was waking up in Intensive Care on the Sunday morning, which was seven days later. And that was my full memory of the whole thing, waking up. But apparently during that period of time I did actually make movement and things like that. And I actually do remember some of the things that actually happened. One thing in particular I remember quite well was the fact that my son's fianc'e came to see me. And she had, I didn't realise it was her at the time, and she'd just got a new job. And apparently, I remember actually hearing her say, "I've got a new job" and apparently I put my thumb up, so I must have understood something. But I didn't hear, I didn't understand much else. It was when I woke up later that I remember different things.
 

Some people remembered talking to their families before sedation but nothing else until they came round. Others had no memories of sedation or of their ICU stay. 

 

He had a road traffic accident and his first memory was of being in a ward a few weeks later.

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Age at interview: 58
Sex: Male
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On this particular day I did go out to [city]. I don't know why. It's not from memory but it just felt right and I have no recollection of the journey. I have no recollection of returning. In fact I don't remember much at all then until almost two, three weeks later. By now I was in trauma. I do not remember my time at all in ICU unit. I've been told that they kept me sedated because I wouldn't leave the tubes alone. I just wanted to rip out all the tubes and go for a walk. Just leave. I was a smoker prior to going into the hospital and obviously I had to give that up and I'm wondering if that was part of my settling down, if you like, and wanting to get rid of the tubes. I just wanted to go for a smoke. I just wanted to go back to my normal life. I didn't want to be there. I don't do hospitals at the best of times but for some reason when you're there you know nothing of it.

Like I say I have no recollection of ICU unit apart from people telling me that visitors were plentiful and that obviously if you're unconscious then you're not aware of that. I was, so I understand, I was shaven, hair washed, nails cut and things like that. Things that you generally do and take for granted to do. And they all had to be done for me. I cannot remember going from the ICU unit to the trauma ward. I don't know whether I walked or whether I was trolleyed. So I have no recollection.

Feelings of security and haziness 
People who had come round in intensive care after planned surgery knew what had happened, though many felt 'hazy'. Some people who'd had heart surgery, though, felt 'wonderful' because they'd been so much weaker before their operations (see 'Reasons for admission: planned admissions').

 

He had expected to feel groggy after coming round but looked and felt much better than before the...

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Age at interview: 67
Sex: Male
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So you woke up with the tube in your mouth. Was there any family there at the time or...? 

My wife was there, yes.

How were you feeling then, when you came round and then for the next, how long were you there in Intensive Care?

I was, when I came out of the anaesthetic, people always say, you know, "When you come out of the anaesthetic you will feel absolutely awful". When I came out of the anaesthetic I felt absolutely wonderful. I hadn't felt so well for so long, you know. And I remember I said to one of the, the surgical team who had been involved in the operation came to see me and he said, "How are you?" I said, "It's absolutely wonderful. The only thing that's missing is the beer." And he said, "Well, we can fix that." And he came back with a can of Guinness, you know. And it was absolutely wonderful [laughs]. 

So you felt much better straight away? 

Yes.

And the first time my wife saw me after the operation, she couldn't believe it, she said, "Oh" she said, "Your lips are not blue any more."

So you felt better, looked better?

Oh, yes, yes.

Some people, who had been admitted to intensive care as emergencies, described coming round as like coming out of a 'dreamtime' or 'dream-like state'. Others said they were confused for a few days after coming round but soon began to realise what was going on. Some people said they drifted in and out of consciousness for a while before becoming more alert and aware. One man knew what had happened when he came round and was moved to a general ward soon afterwards. 

 

He had a severe asthma attack and was moved to a ward after three days in intensive care.

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Age at interview: 60
Sex: Male
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I was kept in Intensive Care all morning and round about lunchtime, 1, 2 o'clock in the afternoon I was transferred to a ward. I'm given to understand that there were lots of tubes coming out of me and that I spent the three days under sedation and on a life-support machine, something that did the breathing for me.

And when you were in Intensive Care, what did they explain to you what had happened?

Well, I think I knew what had happened. I think I was a little surprised, but it was obvious. So I don't think they really had to say very much. It's not as if they've got to break some bad news to you. It was staring you in the face.

And by then you said they'd taken the tubes out?

Yes, when they brought, they took those out before I was brought round. I didn't have anything down the nose or throat, no, no.

And you were there for the morning?

I came round about 5 o'clock in the morning. There was a change of shift at 7. But the nurse was by the bed most of the time. One of the two nurses was a man and the other was a woman, and I can't remember which way round it was. I think it was the woman first and then the man, from 5 until 7 and then the man.

Although he drifted in and out of consciousness, one man said he felt secure and warm despite being unable to speak or move very much. It was only later that he realised how seriously ill he was. Another noticed all the equipment attached to him, but felt calm and cared for by all the nurses.

 

He accepted that he was ill and couldn't move or communicate, but felt looked after and safe (he...

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Age at interview: 66
Sex: Male
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The next thing I remember I was semi-conscious and I couldn't speak, I couldn't move, I could hardly feel anything that was going on. I was just lying there semi-conscious with a very, very deep sense of cosiness, a very deep aura around me of safeness, warmth but I haven't a clue where I was. And I could hear people echoing and people talking and I was drifting in and out of consciousness and eventually I opened my eyes and a friend was by the bed. And she said, "Don't try and speak". 

And there I was, in this bed, and over a very short period of time I accepted where I was and I realised that I had tubes coming from everywhere, pipes, wires, noises and every time I moved one way, zoom, the thing on my arm took blood pressure. I moved that way, zoom, "Oh". I thought, "Good heavens if I move my legs what'll happen?" I couldn't move my legs, "Oh hell I can't move my legs, oh good grief I can't move, nurse I can't move my legs, oh dear me what a shock this is, oh how've I got in this place? Oh good God." And then I learnt to be able to twist myself to the rail and my nursing told me that I had to do that because they had to clean me, and wash me, and wipe me and whatever, I was incontinent. I was catheterised and because of bowel problems I had at the time I had nappies and this sort of thing all stuck with sticky tape, a little bit like these sort of things you see for babies, [laughs] all fastened and clipped. And there I was, and I became aware of things that I'd never become aware of before. I became aware of sound, I became aware of smell, I became aware of touch. And I became aware of a very deep sensitivity, a very deep awareness of people around me and people trying to help me through this difficult situation I was in. And eventually I learnt to be able to move a little bit, I understood that I was tube fed, I was medicated by injection, by infusion or drip. I must have had some big sort of collapse and I realised that I was seriously ill, or had been seriously ill, I was still seriously ill.

Confusion and disorientation
The unfamiliar surroundings of intensive care, the equipment, medications, the actual illness or injuries can all cause people to feel confused, disorientated, anxious or frightened. Many people who had been admitted because of emergencies had no idea how ill they were when they came round. They wondered what had happened and where they were.

 

She felt agitated, confused and thought she was on a plane (she had sepsis).

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Age at interview: 46
Sex: Male
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Patient' Apparently I was very agitated, even though I was sedated, I mean and you'll know more about it than I do because I don't remember anything of the sedation. I remember, I knew something was wrong when I was sedated but I didn't quite know what it was and I knew, I could feel, I could hear noises and I could feel warm and I could feel cold because I thought for some reason I thought I was in an airport and I thought it was Christmas, because Christmas I associate with a happy time and I did think that just, again I'm really pleased it's quite common I thought I'd been a victim of a sex crime and apparently what we've talked about, me and the doctors, we think it was because of the personal care you know, touching me in really intimate places. And I'm a very private person that way so they think that was the link and that made sense. 

And also I could hear, I thought it was a plane, it was like a whoosh, whoosh, whoosh sound and apparently that was the ventilator. And it just, it was so great when I woke up and it wasn't right away but I started to say well this is what I felt, did that happen? And they were saying the whoosh, whoosh, whoosh sound, that could've been your ventilator.
 

Another woman felt extremely confused and thought she'd been in several different hospitals. She'd temporarily forgotten many personal details. 

 

She couldn't remember her name, her husband's name or details about her children, job and home ...

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Age at interview: 47
Sex: Female
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I remember the nurses saying something about, "Your husband." And I said, "Oh." I indicated, "Oh, he won't come because he doesn't like hospitals." And they said, "He's actually been staying here. He's been here most of the time". And when he did come I couldn't remember his name. And I couldn't remember my own name either. And I can remember saying to my mum, I knew it was my mum, I knew who my mum and dad were and I knew who my husband was, but I didn't know their names. And I can remember asking who I was, and people not really understanding that. And I can remember indicating to my mum, "I don't know what I look like." And she said, "Oh, you look all right, love" thinking I was concerned about how I looked. What I meant was, "I don't actually know what I look like". I had no idea. Because the nurses kept saying to me, "Isn't your hair lovely." And I thought, "I've no idea, because I don't know what colour it is, how long it is".

And because I couldn't move to touch it and because I had no memory of what I looked like. I found that very disconcerting. I didn't know how old I was. I thought I was 58. And I think the reason for that was that when I was having the operation, the anaesthetist and the consultant and everybody who came to see me kept asking my date of birth, which is 1958. So I think that was something that had stuck in my head. I knew my daughter, but I didn't know how old she was and I couldn't remember when her birthday was. I can remember puzzling about it and trying to think about when she was born. And I couldn't recollect when she'd been born. I couldn't remember having her. I couldn't remember my home, what it was like. I didn't know whether I had a job or not. I couldn't really remember anything about who I was. And that was very, very scary.

For one woman coming round was 'a nightmare' and she remembered looking down at her toes that had been blackened by infection. Another was 'terrified', despite reassurances from her family that she was safe, because she had no idea what was happening to her.

 

She remembered hearing voices, having treatments and coming round unable to do anything for...

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Age at interview: 44
Sex: Female
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I can remember lying there and hearing voices and thinking, I was talking to my cousin about this here, and I remember thinking, "Oh, [cousin's name] there and Auntie [auntie's name], they'll be over to see me in a minute." And I could hear their voices. And I've said to her since, and she said she came in and was like talking to the nurses but shouting out to me, "It's all right, [participant's name]. I'm coming over to see you in a minute. Hold on a minute." So whether that, and I remember thinking, I could see this man jumping around and people saying, "Oh, he needs, he's got to be sedated" something or another. And apparently there was a man in the bed opposite me that had to be restrained. So whether that was there, I don't know.

The first I can remember is about, vaguely say two weeks later when I had been taken off sedation slowly and bought around. And the only way I can describe it, it was a nightmare. I woke up. I wondered what on earth, where I was, what was going on. I couldn't speak because I was on a ventilator. It was very, very, very distressing. 

I didn't fully understand what was going on to start with. I can just vaguely remember my family being there, them talking to me. I don't remember anything while I was sedated. There's some things that, maybe I heard people talking, because the funny thing was when I came around, in my head I was not in the hospital. I was where I was born. It was really, really, really strange. And it was just various voices. I don't know whether I was dreaming, I don't know. And so I just really remember just slowly coming around. To start with I couldn't do anything, I couldn't feed myself, I couldn't move myself in the bed, and so everything was done for me.

One woman felt angry when she came round. She couldn't understand why she couldn't move or how much time had elapsed. For many, it was a further shock when they tried to write and were unable to do so because of the muscle loss or neuropathy they'd developed whilst sedated. ICU neuropathy is the extreme weakness that makes normal daily tasks difficult. Although its causes are poorly understood, it is estimated that 33 - 57 percent of patients who stay in the ICU for longer than 7 days could get neuropathy.* Exact data is hard to obtain as variation exists in defining the condition.

 

She found it difficult to hold a pen and felt frustrated because her writing was unintelligible ...

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Age at interview: 40
Sex: Female
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I just couldn't speak and I was so frustrated because I couldn't speak. I couldn't even write, 'cause my sister gave me a pad and a pen, and she said try and write, I couldn't write. And I'd write things, I'd go like, I'd point to them, and then when she looked it'd just be scribble and she would be saying, "I can't understand, write it down or try and say it but try a bit." But she was really good at understanding what I was trying to communicate, my husband was like hopeless. He was like saying thinks like, "Hoarse, you're hoarse?" [laughs]. He was just hopeless, and she was like really good but I couldn't write anything.

I couldn't even really, could barely lift a pen up to write on the pad and then the writing was just, it wasn't even writing, it was just marks on the pad. I thought I was writing stuff, and I thought that my writing was okay and I was frustrated with people when they were like, I'd write something and they'd all look at each other and they were like...

Even while people are sedated, a lot of vital medical activity is taking place. This includes checking monitors, turning patients while they are in bed, and physiotherapy. Other nursing care, including cleaning around the mouth, shaving and nail-care, is also carried out. One woman felt confused and frightened when she came round because a nurse was brushing her teeth.

 
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She had pain in her chest when she came round and, in her confusion, felt she was drowning (she...

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Age at interview: 43
Sex: Female
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So I had the surgery. It was six and a half hours, it was quite a long surgery and I went straight to Intensive Care. I'd say then I woke up in Intensive care and, as I say, I was in a lot a pain from the chest drain. But they dealt with that very, very quickly, I have to say. But I woke up with them actually trying to clean my teeth. I was on a ventilator. And it's hard because I know they were trying to do it because they were trying to make me feel more comfortable, you know, to make my mouth more sort of fresher and so on. But because obviously I had a breathing tube in, I couldn't swallow. So they were having to take the fluid out and I thought I was drowning. I mean, I knew, obviously, I wasn't, but because, and they were trying to explain it to me. But I'd just come round and I mean, obviously I'd come round before and not remembered. So that was actually quite, really frightening, of the whole experience was the most frightening experience. Even though the pain was horrible, I knew it was going to happen and I knew that something could be done about it. This, not being able to speak and sort of trying to say, you know, I think I'm, I feel like I'm drowning, was actually very frightening. And it was actually a nursing thing rather than a medical, a sort of doctor related thing.

The other thing is that I can actually sign, basic British sign language but nobody else could [laughs] so that was even harder.

Sleep and Hallucinations
Some people were confused when they came round because they were having hallucinations. Many 'drifted in and out of consciousness' or were 'lucid and then disorientated again', and said that it was some time before they felt clear about what had happened. Disorientation can also be related to the lighting in ICU and lack of windows. Some people didn't know whether it was day or night and said that their sleep patterns had been completely disrupted (see 'Sleep, dreams and hallucinations'). 

 
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She was hallucinating when she came round and felt terrified of the nurses (she had pneumonia and...

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Age at interview: 40
Sex: Female
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And the nurse said to me something about hospital, but I didn't catch the first bit that she said. I couldn't move, couldn't move at all, I felt my throat, and I knew that I had a pipe into my throat, a thick pipe. I could feel the wires, I could see all the wires in my arms and my legs. I just didn't know what had happened, I was just, I just didn't know. I just didn't have a clue. And I thought, I thought alright I've been kidnapped, and I'm in a clinic, and I'm somewhere like Dubai or somewhere like that, but I know my family will be looking for me, so I was like...I got the nurse to come over 'cause I couldn't speak 'cause I had no voice at all. Because the pipe was down my throat was pressing on my vocal cords, so I asked her for a pen and paper, [inhales] couldn't write, it was like a mad spider, I just couldn't write. I managed to write 'my name is [participant's name]', so she said, "We know." So I wrote 'diabetic' underneath so she said, "We know, we've got your notes". And I thought, how do they know all these things? I wrote, 'I am a hostage' and she looked at it and went, "Alright." She said, "You're not a hostage, your husband's coming in to see you, I've rang him." "What? How?" I said. I was like hallucinating something terrible. I was imagining the nurses were saying, "Let her husband come in and we'll kill her."

And oh awful things, and I remember looking at the nurses station where they were all sitting, and they were talking about shopping and things, I mean it was a Sunday afternoon. But I was imagining they were saying, to this nurse, "You're new, the people here, most of them are barmy and they'll ask you to pass notes to people outside but don't do that." And I was thinking, how am I gonna get out? How am I gonna? I can't move, they've got me drugged up so I can't move, I can't speak, how am I gonna get out? And they kept on saying to me, "Your husband's coming in, your husband's coming in". And I was thinking, oh yeah right, I know he's not, I know he's not.     

ICU equipment and environment
The noise of equipment and machinery in ICU, including alarms, can add to the sense of confusion and disorientation when people come round. Some said that these noises, coupled with their hallucinations, led them to believe they were on ships or planes. One man thought he was at a party in the hospital. This confusion also happens because normal processing of sensory information is affected.

Breathing tubes caused many people to feel uncomfortable or frustrated after coming round, and made communication with staff and visitors difficult. 

 

He had a breathing tube in his mouth so got the nurses' attention by shaking a container that...

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Age at interview: 60
Sex: Male
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Patient' Oh I must've been pretty well unconscious for hours at a time, I only remember snatches. When I woke up I wasn't worried, I think I was too under the influence of morphine and things like that.

The later stage, when I started getting a little bit more stable, I woke up and I was on the breathing apparatus, oxygen and life support basically. And they'd obviously stabilised me because I came round then and I was, from then onwards I really remember most of it but full of haze because I was on a high dose of morphine. And I had all these leads monitoring my heart and breathing and everything you can imagine, wires going in here, there and everywhere else.

Mother' And in your throat.

Patient' Yes, yes and I had the breathing apparatus in my throat. And the worst thing about that is I couldn't speak so it was hard to communicate. And in a way it's one of the worst things about being on a life support. You can't communicate with people, people are very understanding and the nurses were pretty good at understanding what you wanted but if you wanted something and nobody was looking your way it was a bit worrying. But they gave me a little, like a little medicine bottle with beads or something in it and if I wanted attention I rattled it. And that brought attention straight away nearly every time, so that was a comfort.

Then I found that my hearing was going, I think that was because I was congested, and that made things even worse in a way because if you can't communicate one way and then the communication gets more difficult the other way. And also my eyes weren't, didn't seem to be all that good and I couldn't bare to be parted from my glasses. So whenever I was washed or anything they'd wash my face and I'd immediately put my glasses back on because that was really you know the only way I had of communicating.

Some people were told that they'd come round on a number of occasions but were sedated again to prevent them from pulling out equipment. 

Coming round and feeling thirsty was difficult for some people as they were unable to drink. Seeing medical staff drinking tea in ICU often left them craving for a drink.

 

He couldn't walk, drink or talk when he came round but valued being taken outside for fresh air ...

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Age at interview: 33
Sex: Male
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I can't say that these things happened in a chronological order, but things I remember from Intensive Care were coming round and trying to find out where I was and what day it was, because they said I may move or I may be under for anything up to a week. I remember the staff were, without exception, fantastic. I remember being shaved by a lady who was just brilliant. I mean, being shaved for the first time by somebody else, was quite worrying, I was aware of things like that. 

I remember people coming to see me and my family at the end of the bed and [my wife's] brother who's also a good friend of mine was, and because he wasn't laughing, that's when I suddenly thought, oops this is serious. I remember trying to mouth to [my wife] a question or a point or something and I've no idea how she did it but she actually understood the majority of what I was trying to say. I think, a couple of frustrations that I had when I was in there was I couldn't walk, I couldn't drink. I remember several of the consultants would walk round with a big cup of tea with 'tea' written on it. And I drink quite a lot as a person and I found that really frustrating. But it became a joke, you know, between me and the doctors. I don't know how I did because I couldn't laugh because you know I couldn't talk, but it did. But I think two major things, one, they allowed me to go outside at one point which was just the most amazing feeling of, it was blue sky, it was fresh air, it was such an important mile stone. I think [my wife] had explained that I like windows, fresh air and everything else, so they actually took me outside. They moved my bed position from one looking directly into the ward, to one that was in at an angle so I could look out a window. I mean that made such a difference to me as a person. 

A few people had felt reassured when nurses told them what was happening to them or what to expect. Others felt isolated when they came round and would have liked more reassurance, interaction and explanation (see 'Nursing care in ICU'). 

* Johnson, KL (Apr–Jun 2007). "Neuromuscular complications in the intensive care unit: critical illness polyneuromyopathy.". AACN Advanced Critical Care 18 (2): 167–80; quiz 181–2. doi:10.1097/01.AACN.0000269260.99169.70. PMID 17473545.
 

Last reviewed August 2018.

Last updated May 2015.

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