Intensive care: Patients' experiences
Emotional aspects of recovery
Admission to an intensive care unit because of critical illness or an accident can have a huge impact on someone's life, both physically and emotionally. Many people said that, as well as recovering physically, they had to accept and deal with what had happened to them emotionally. Here people talk about recovering emotionally after being in intensive care.
People who have been in ICU can experience a range of emotions at various stages of recovery, including fear, frustration, a sense of achievement, anger and hope. Everyone is unique and can experience any range of emotions at different times.
When some people first came home, particularly in the first month or so, they found it difficult to sleep and this affected them physically in terms of tiredness and emotionally in terms of their moods. A few had sleeping tablets for a while to help them sleep. Others recalled how their injuries had prevented them from sleeping because they could only lie in a particular way. One man, though, said he now slept better than he'd ever done before.
He used to be an insomniac but now gets a full night's sleep.
Well not really, but they used to give me tablets to put me to sleep, because I used to tell them I can't sleep. They used to give me tablets to put me to sleep so, yeah and then as I got better I said I don't need the tablets. Now I'm a very, before I went in to hospital I was a very bad sleeper. I'd have maybe four, three hours a night, that's it. I was one of them people who couldn't sleep, what they called, insomniac. Anyway they got into the hospital room, I started sleeping, proper, which I couldn't before. Now I'm out I can, I used to stay up till two or three o'clock watching telly, now it's about eleven o'clock, ten o'clock I'm nodding off.
Never, never in all my life have I been like that, so I can sleep better now but I think that's due to what me body's been through. And I can't do what I did before, I think I can but obviously I can't, it's making, me body's telling me no you can't, you're tired. And I'm having a damn goods night's sleep all the time now, which I never could. All me life I've never been able to sleep proper, no.
Some people said that, when they first came home, their sleep was disturbed by nightmares. A few found discussing nightmares with medical staff, either before they were discharged or at a follow-up appointment, reassuring because they learnt how common it was for people who'd been in intensive care to have nightmares.
She had nightmares when she first came home that drew on things she'd vaguely seen or heard in...
And not long after I was hearing all this, there was another young woman who had a cone-shaped head, and it was cone-shaped with these white bandages curled right up, completely cone-shaped, who had little glasses and shuffled. And I just, from that point onwards that was my nightmare. My nightmare consisted of brain-injured people, where this cone would lift off like a hat and there would be half a brain. So it had everything to do with what this girl was screaming about. It wasn't the same person. I know that, absolutely. This girl was screaming about and saying that she had half a brain, and she'd been in an accident. And this girl with the cone, that, now I happen to know that she actually, this girl who thought that she had half a brain, she'd had her tonsils out, and this was the pure effect of coming out of the anaesthesia. Yes. Because I got so upset and worried about her. And the girl with the cone head, well, it was made more so because she in actual fact suffered from Down syndrome, which made, she already had a shape that sort of was familiar with that. But she had a problem with her ear and had had some surgery on her ear. But they had somehow or other bundled her hair so that her hair came out of the top of this cone of bandages. But even after I knew that, that image, that was my nightmare.
Did you have nightmares when you came home as well?
That was when, that was when I came home.
For how long? Did they go away gradually?
I would say that that lasted three weeks, before I got a proper, what I call a settled night's sleep, where I slept through without waking up, without waking up because of a dream, because of a nightmare.
Memory and concentration
Some people felt their short-term memory had been affected by their illness and treatments and one woman discussed how she was unable to remember certain words when she was having conversations. Others said their concentration was poor and they found themselves unable to watch television or read for any length of time before their minds drifted off to other things.
When they first came home some people said that they felt uneasy about no longer being in the safe environment of hospital because they were unable to receive immediate attention if anything went wrong. Others were anxious at different stages of recovery about getting ill again, feeling panicked at the slightest cough or cold. The thought of having to go back to hospital or ICU frightened several people. When people had been able to discuss their fears and concerns about their recovery with medical staff, they felt much better able to cope.
She felt worried about catching an infection that might take her into hospital again.
Partner' You were worried, she was worried about anything, you know any germs in the air or catching any, like I say, hairs off the cat. You know she wanted to make sure everything was, well nothing was...
Patient' I think it was because once I woke up in intensive care and realised the seriousness of it and the doctors and nurses on intensive care were really vigilant about washing their hands, you know all the sort of clinical procedures you know. When I came home and they said my immune system was low, I was really panicky.
Many people felt frustrated when they first came home, often because of their weakness, slow recovery and dependence, and this made some 'weepy' or 'tearful'. Others felt emotional and tearful when they went outside for the first time in months. Yet others were emotional and sometimes depressed at different stages of recovery and didn't always know why.
He felt extremely emotional at different times and discussed his feelings with a doctor at a...
To come to terms with why you would suddenly want to cry and no stopping you. You don't know when it's going to start. You don't know when it's going to stop. You don't know how long it's going to go on for. I found this one of the worst things to come to terms with. Again, like I say, it's years since I've cried before. It's a natural thing that made me cry. This was unnatural.
My second visit I think with [the consultant], I asked him about counselling and he said that he didn't believe in it. He thought it was a retrograde step. People were better if they didn't go for counselling and just let their emotions out. I think he was basing it on my emotions and the fact that if I cried and let this out of my system I would not need counselling. It was because I was holding it within and not letting forth the tears that I was doing myself no favours, which is why I'm sure he felt that counselling wasn't necessary. He was telling me to cry and get it out of my system. I was not doing this.
One woman described her recovery as a 'roller coaster' of emotions and said she felt particularly emotional, angry and frustrated when she was tired. She also felt 'euphoric' about being out of hospital and 'down' because she couldn't do all that she wanted to.
She often felt angry and frustrated because she wanted to make the most of life but, physically,...
And my daughter commented she said, and even this was only a couple of days ago so it's seven months on, she said "You seem to be really angry, there's like this residual anger about something and what is it?" And I really don't know. And it's not all the time but I do get quite angry.
Many others said they felt emotional at various points in their recovery, including when they thought about what might have happened. Some wondered 'why me?' and many wondered 'what if?' The thought that they'd 'nearly died', that they'd been 'so close to death', had a huge impact on most people and everyone dealt with this in different ways (see 'Making sense of what happened' and 'Attitudes to life during and after recovery'). Some also felt emotional when they realised just how much love and support they had around them.
He felt emotional when he thought about young people who had died and how close to death he...
How did you feel emotionally during the whole time?
Very emotional, very, even now I'm quite emotional about it. Just to realise how close I'd come to dying really. And also it was all the support and help of family. And the whole village as a community were right behind [my partner], 100 per cent. Everybody was always asking. Even people today, I've been up to [city] airport and saw a couple of local people. They said, "Crikey, we haven't seen you since you've been bad. How are you doing? How are you feeling?" It's still going on now. That's absolutely fantastic, I couldn't believe it. Absolutely fantastic. It's just, it's just brilliant, absolutely brilliant, overwhelming.
She felt emotional when she saw her children perform in a play because she might not have been...
Like the children did a church service, I can't even remember what it was for. They have that many church things, and I went to see it and I was like watching them, the littlest one was singing at the front of the church and the oldest one was sitting further behind me. And I was waving to him. And it just dawned on me, I could be dead and then who'd be here looking at this? I mean who would? I mean I know [my husband] would look after them and everything but, if I'd died what would happen? And I got it all like, in the church, and one of the Mum's that we didn't know who was sitting next to me, she just said to me, "Oh look at you all tearful." She said, "I'm like that when they're on stage." And I thought, I'm not even bothered that he's on the stage, I'm just thinking like, God if I'd have died. And sometimes when I'm watching them, I think, if I'd have died, I've said to my husband, if I'd died back in the beginning of November, we're that far down the line, the littlest one, he would probably hardly remember me now. He probably wouldn't remember what I looked like, he would not remember anything about me really. The older one might have like a few memories of me, but when they get to teenagers, the littlest one, [son's name], he would not remember me at all 'cause he's only four now. And the oldest one he'd just like have vague memories. That bothers me, it bothers me about getting sick again.
Paranoia, panic and flashbacks
Some people felt paranoid when first taken outdoors, one woman thinking that everyone was looking at her because she was in a wheelchair. A few others had panic attacks when they were still recovering and disliked being in crowds. One man said that, at first, he didn't want to speak to people on the phone or to socialise. This woman recalled having a flashback when she saw a nurse in uniform outside her children's school.
She froze when she saw a nurse because it reminded her of being in ICU.
And it took you back to the time when...?
Yeah, flashed me back to it, and I thought, is she one of the nurses? There was that many of them. There was just loads of nurses, they have one-to-one nursing in intensive care but you're seeing three a day. I was like, "Was she one of them?" but I know they wear that uniform throughout the hospital like the blue theatre things, but that's basically it really.
Many people were glad to be back home from hospital and in their own environments. Some said that, although they were very weak and dependent on relatives, they were pleased to have overcome their illness and quickly accepted what had happened. Some felt frustrated with the slowness of physical recovery but accepted that they'd been extremely ill. Others said it took them some time before they could accept their experience but they now felt 'lucky' compared to those who hadn't survived intensive care.
He'd never been in hospital before and surprised himself at how easily he accepted all that had...
I was fine. I was fine in myself anyway, you know, but I knew there's a lot of healing still to be done, and it has been done you know, slowly but surely it's, everything's getting better.
Could you tell me a bit more about how you felt through the different stages emotionally?
Very well considering, you know I've always had a dread because I'd never experienced it before, I always had a dread of having to go into hospital.
This would have been the very first time?
This has been my first time yeah. And when I used to visit people in hospital, relatives and friends, I used to think, you know, "Good Lord I'm glad I'm not in here. I should hate to be in hospital." But then it happened and I'd been taken in and well everything, I seemed to accept everything so readily, so calmly and didn't seem to bother me a great deal to be quite honest. I amazed myself I think really. I thought I'd have been a dreadful patient but apparently I wasn't too bad.
[laughs] So you came back home and you've slowly been recovering?
Anxiety, depression and post-traumatic stress disorder
It is common for people who have experienced an event like sudden critical illness to feel shocked and, later, anxious or depressed. Losing control over one's life and being weak, dependent and immobile for quite some time can affect many people who have previously been relatively healthy and active. Some people who have been in intensive care experience Post-Traumatic Stress Disorder (PTSD). This is when they repeatedly re-live the experience in the form of flashbacks, memories, nightmares or frightening thoughts, especially when they are exposed to situations that remind them of the event. Anniversaries of the event can also trigger symptoms. People with PTSD also experience emotional numbness and sleep disturbances, depression, anxiety, irritability or outbursts of anger, and intense guilt. Most people with PTSD try to avoid any reminders or thoughts of the event. PTSD is diagnosed when symptoms last more than one month. Although PTSD might not be diagnosed and labelled, many people we spoke to had experienced some of its symptoms. How much professional help and support people receive is sometimes a personal choice and, sometimes, dependent on resources.
If you have symptoms of anxiety, depression or post-traumatic stress, then you should be treated according to the recommendations outlined in the relevant NICE guidance. NICE has produced ‘Understanding NICE guidance’ about anxiety, depression and post-traumatic stress.” (NICE 2009 CG83).
Some people said they felt anxious or depressed when recovery was taking longer than they expected or when it was hampered by colds and infections. A few said that their illness brought up ongoing personal problems, and this led them into depression. One man was prescribed anti-depressants. He didn't want them, though, and said his feelings of depression had more to do with being out of work than his illness. Another was on anti-depressants for his depression but said he would have valued some in-depth counselling or attending a support group for people who'd been in intensive care, had there been one.
He became depressed after being in hospital and realised that many problems from the past hadn't...
Do you feel now that, you know, you're back to the health you were before or not quite?
That's a very interesting question because the operation that I originally went in for has improved my health in a lot of ways but I've been left with what I call bitty residual symptoms from Intensive Care and previous long term illness, right. If I was honest I don't see, if you're depressed, I don't see the total answer is anti-depressants, and I would, I think a way to approach it is, that all this that I've been saying is scratching the surface. Because there's so much hidden, there's so much that the Intensive Care patient suppresses and hides. And I think the world is our oyster at the moment and that, you know, we're beginning to make inroads into patient representation in Critical Care, and I think it's going to take off in the next twelve months. I hope so, I hope so, it won't be for the want of trying.
So in some ways you do feel your health, physically, your health is, better?
But then there are the residual things. In an ideal world, what might help with the residual things? Because some of these inroads you've mentioned, you'll be making with support groups. Can you just tell me a bit, in the ideal world, how might the residual problems be?
I think something that we fail to take on board as people, as different persons, I think that something we fail to take on board that a period of critical illness highlights a lot of other things that have happened in the past. And you suddenly realise that a lot of things in the past haven't been put in their appropriate pigeonholes. They've been put in the pending file and they're just about hanging in there and you need to go into the pending file and put all these things that are pending from whatever it may be into the proper file. And I think that the way that that is going to be looked at, I think if you look at the, what's known as the Pyramid of Human Needs and what people need, and I think we all want to feel warmth, and cared for, and fed, and loved, and looked after. And I think that one of the things that we can do with patient groups is give mutual support at the same time as gaining mutual support, I think that's very important.
One woman said she became depressed when she worried about being able to cope in her job again (see 'Impact on work'). Several said they bottled up their emotions because they didn't want to worry or upset relatives. One of these women said she found it difficult to discuss what had happened with her family and felt extremely guilty for what she'd put them through.
She was waiting to have some counselling to help her deal with feelings of guilt.
And that's what you'd like to talk to the counsellor about? Why you're having these feelings? Is that, you know, is that what you'd like to talk about? Why you're having these feelings?
Have you talked with family or it's someone outside the family you really want?
I have talked to somebody about it, who's in the family, and they said, not our immediate family, but they said, you know, "You shouldn't, you have got nothing to feel guilty about." But I just, I just do.
Even now, even now I still find it hard, you know. I just, you know, to imagine my, to imagine my kids there. I just, and, you know, my mum and dad, and my brothers. You know, I just find it so, I just feel so raw, so, it hurts.
Other people said they felt anxious, 'down' or depressed at different points. Some were reassured when they discussed their feelings and concerns with medical staff, including psychologists. One man who was depressed said he found discussing his feelings with a psychologist frustrating and preferred talking to family. Another said he turned down an offer of counselling because he preferred the spiritual counselling he received through his church.
She felt reassured when she discussed her feelings with a nurse and learnt that how she felt was...
And I needed to speak to, I went back and spoke to the nurse consultant on ICU and she explained, and I only saw her the once but she explained it's perfectly normal. And that helped, once she said to me, "Loads of people feel like that when they come out of intensive care and you need to be kind and give yourself a bit of time, it will pass." I mean I still have my days but it's not like it was you know sort of three months ago where I literally was turning everything that was positive into a negative. But I wasn't telling anybody, I was sort of, well I was telling you [partner] wasn't I but when I went back to intensive care I talked about it to [the nurse], it sort of made me realise it was normal.
Some people said they would have liked to talk to someone outside the family about their experiences of intensive care but hadn't been offered counselling. One woman who received counselling said she would have valued sessions with someone who knew much more about the impact of intensive care on people.
She felt that the counselling she received didn't deal specifically with some of her ICU...
They'd [counsellors] never really come across anybody like me or if they had maybe one or two other cases so they didn't really know what to look for. And you know obviously there are sort of common threads to sort of post-traumatic stress disorder and things like that they could kind of look out for but in terms of. I still to this day don't really feel that I've actually been able to speak to anyone who understands about the memories that I have of intensive care and what a sort of terrifying and disorienting experience that was. And you know it haunted me for a long time. It kind of doesn't haunt me as much as it did.
Some people said that, while they generally got on with life, they found the anniversary of their illness a difficult time, one woman saying it was 'like a bereavement'. For another woman, the anniversary of her illness coincided with the death of her unborn baby, so was a particularly challenging time (see 'Death and bereavement').
Improvement and recovery
Many people improved emotionally as they improved physically and could see an end to their recovery time. They also felt confident again because they were more independent. One of these people said she now focussed on the present and looked forward rather than at the past. For one man, who'd had a road traffic accident, his emotional recovery also included driving again.
Her wound is slowly healing and she is looking forward to doing all the things she enjoyed before...
No, it shouldn't be much longer because like I've been on now three weeks. I don't, maybe a couple of more weeks. And then I've got like to have dressings on. You know, to close it up finally. And then I'll be normal, well, a bit normal.
So you're slowly recovering?
Are you feeling better?
Day by day?
Yeah. Yeah, I definitely can tell, you know, because some days I even forget about it and forget I have a wound, and then I think, "Oh God", you know. "You have been poorly but you're getting better." You know, because like, loads of people say to me, "Oh, you've been so poorly", and, "you've been through it," and I think, "Oh, shut up, I don't feel like that now." You know. I am now. Yeah.
So how would you like to see yourself recovering over the next few months?
Oh, I'd like to be able to drive my car again. And just like do normal things like swimming and things, because I used to go to swimming and just to be able to go, I don't know, go shopping on my own and, you know, just to be able to walk without this machine [laughs].
With hindsight, often after they'd recovered enough to do most daily activities, some people discussed the positive outcomes of their illness, such as changes they'd made to their quality of life (see 'Attitudes to life during and after recovery').
For those who are admitted to ICU because of planned surgery, their ICU and general ward stay is usually shorter and they are not as weak or immobile as those admitted as emergencies. Even so, awaiting and having major surgery can be frightening and the interruption to normal, daily life worrying. Coming back home from hospital involves a period of recuperation that can affect people in many different ways, including all the emotions experienced by those who were admitted to ICU as emergencies. One man, who'd had surgery for cancer, said that a few days after coming home he felt depressed but was unsure why. Like several others, though, he soon accepted that he needed time to rebuild his strength, and felt he had plenty of support from family and medical staff.
A few days after getting home he felt depressed and accepted that recovery from major surgery...
Was this, was this when it all kind of hit you, what...?
...you'd been through?
I think so. Yes. I think it had. Coming back home, you know, the thought must have gone through my mind, I can't say I consciously thought it but, when I left home "I won't see home again." Though I didn't actively think that, till coming home, being back with my family you suddenly realise, "Well, I've made it." And it's sort of a relief, an outpouring, I don't know what. But most peculiar. But I got over it.
Yeah. So, you felt a bit depressed for a couple of days. After that, you were more or less back to normal were you or...?
Yeah, obviously, normal is relative because you still feel extremely weak. Moving is careful to say the least. I had the, again a silly feeling that, an illogical feeling that if I do too much, it would all unzip itself. You know, which is stupid because they wouldn't let me home if it wasn't OK. By that time all the fixings were out and there was just one patch that hadn't quite finished healing. But, yeah, I mean, you don't, you feel quite tired, everything is a little bit of an effort. But you gradually get stronger and stronger and you, frustration I think is the way to put it because I've never been actually been seriously ill in my life before this. So not being able to do the things that I found, that I had been used to doing was extremely frustrating. But you learn to accept that you can't do as much as you could before. But, every day, if you do as you're told, you can do a little bit more. And I suppose the most valuable lesson is the fact that you're not going to get over it in five minutes so you might as well sit back and take the time and do what the doctor ordered, basically.
For some people who'd had planned surgery, the intensive care and overall hospital experience was often, with hindsight, a positive one. This was particularly the case with those who'd had heart surgery because, although they were weak when they first came home from hospital, they were soon able to do more than before their operation (see 'Physical recovery').
Last reviewed August 2018.
Last updated May 2015.