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Intensive care: Patients' experiences

Attitudes to life during and after recovery

Admission to an intensive care unit can have a huge impact on a person's life, as well as on their families. Most people said their experience of critical illness affected them in many ways, whether they'd been admitted to ICU as emergencies or after planned surgery. Critical illness can be a worrying, frightening event in a person's life and many said, although they were 'moving on' or had moved on, it wasn't an experience they'd ever forget. For some, the longer-term effects of critical illness included making changes to the way they lived their lives once they were well enough to do things. For others it involved making changes when they first recovered and then, over time, reverting to how life used to be before their illness. Yet others said that, while their illness had interrupted their lives, they were now 'back to normal' or looking forward to getting back to normal. Here people talk about the effects of their illness or injuries on their daily lives, aside from physical and emotional recovery. 

Many people said that being 'so close to death' had made them value life more and they now wanted to enjoy it and make the most of every day. Some saw their recovery as 'a second chance' at living life to the full. Many said they'd become less materialistic, realising how precious life was and that it could be 'taken from you' without any warning. Some noted that, when they were first able to do normal daily activities, they 'wanted to change everything'.

 

She now appreciates what's important to her in life and wants to enjoy it more.

She now appreciates what's important to her in life and wants to enjoy it more.

Age at interview: 46
Sex: Male
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Patient' I do think it has definitely changed me where before people would say you know everybody has tragedy and everybody has awful things in their life. But some people will say oh you know my cushion covers don't match I'm so stressed, I'm so stressed. I am less tolerant with people like that. I would say to somebody like that now you need to get some perspective where, and I need to take my own advice and I think I did in terms of when I get a bit down, there were people who didn't come out of intensive care. There was the lady who was next to me who lost, who had both her legs amputated and I thought I imagined that and [my partner] said no. And I'm like when I went back to the hospital and I saw the girl who had, you know a dead pretty girl who'd had the trache scar and it was, it was more recent than mine and she had that look of fear in her eyes and I wanted to get hold of her and say to her it's going to get better you know. And when people sort of, you know in work and you get an email, so and so has missed this deadline for this very important meeting I think oh it isn't that important, the world keeps turning and you know and there are very, very important things but it's not if you've missed an email. 

Partner' We haven't changed things dramatically, we haven't taken up bungee jumping or anything like that. 

Patient' No  

Partner' But whereas we would weigh things up, should we or shouldn't, where may be in the past we'd have said oh well we can't really afford that, now we'll say oh blow it, we'll go for that and go sort of the other way a little bit. And I'm making an effort not to be wound up by small things like if the girls haven't made their beds you know so what, try and not let little things bother me any more and enjoy things and enjoy life a bit more and appreciate what we've got while we've got it. 

 

She wanted to change her appearance, decorate the house and have more quality time, and was...

She wanted to change her appearance, decorate the house and have more quality time, and was...

Age at interview: 41
Sex: Female
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But I did change. I started, I wanted to change everything. I went out and bought a whole new wardrobe of clothes. I decorated the house from, and it was quite out of character as well, I went from having, you know, say cream walls and pastel colours to painting the walls like orange and bright yellow and doing things that I wouldn't have done before.  

Why did you feel like doing this? 

I don't know. I just, I don't know I just did it. And I had this, I got this thing in my mind that you're only here once and that you never know when things are going to be taken away from you, and there's no pockets in shrouds so you might as well spend your money. There's no point watching your bank balance grow and, so I went a bit daft and [laughs] was booking holidays and changing the house, changing my clothes. I wanted to completely change my hairstyle, just really things that were really out of character for me. I'm one of those people that kind of plods along and I wouldn't say I don't like change but I, you know, to change things for me I'd have to think about things a lot and really convince myself that things were right, whereas I was a lot more spontaneous. And I remember my husband saying, "You're gonna have to stop." [laughs], "You're gonna have to stop this because we're gonna have nothing left." [laughs]. And then you started to think, "Yeah I've done enough now with, I better just calm down a bit." But again when I've told the Psychologist and she again just said, "But you're not the only person who would do something like that, it's quite normal after what you've been through." And so, you know, again I was a bit relieved that I wasn't doing something that was completely, I thought abnormal.

Some people said their hospital experience had made them realise just how important the people in their lives were, including partners, children and friends.

 

He now values spending more time with family and the memories they share and create together.

He now values spending more time with family and the memories they share and create together.

Age at interview: 37
Sex: Male
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Has it made you look at life differently?  

Yeah, yeah. I mean it's, I'm not saying it's a horrible thing to say but like my parents, I know they're getting older so I spend quite a bit of time with my family because all of them, they live locally anyway, but now I'll go out of my way to spend more time with them, my nieces and nephews just because I know that at any time something could happen to someone and they'll never be there. So yeah, I think the biggest thing is spending more time with the people you love and care with, just because if anything happens you can't get that back. So, as I say, it doesn't bother me and I just don't go out socially, I'd rather spend more time with the people, my family than thinking, oh yes I must save lots of money to go on a certain holiday because going on that holiday, the memories will only be for me, whereas if I spend it with the time, the time with the people I care for, we've all got memories. So that's the way I think of it and money doesn't matter too much to me at all. It's nice to have it but then I sort of, rather than spend on myself, I'd rather spend on my nieces and nephews and all, like that so, I think that's the biggest thing that's changed me, is that it can happen to anyone anytime and you'll never get that back.  

So it's better, I know people say you know you can start to live your life from now on and splash out and whatever but I don't really sort of see it that way. I'm just grateful that I've been given that chance to spend more time with the people I care for. 

Some also discussed the personality changes they'd made as a result of being ill, a few saying they were now more open about their feelings.

 

Her illness made her realise that life is precious and she is now less tolerant when people...

Her illness made her realise that life is precious and she is now less tolerant when people...

Age at interview: 44
Sex: Female
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And has your attitude towards life changed in any way? 

Yes. It makes you realise, you know, this isn't a dress rehearsal. This is the real thing, and life is precious. And, like I said, I have got zero tolerance, I cannot put up with people moaning about they've got a cold or they've got an ache in their leg or anything like that now. 

It has just made me change my life, my outlook on life is so different. I find that I've got zero tolerance. I can't sit and listen to people talking about aches and pains, when really they don't, they're lucky that that's all they've got.

 

He is now able to talk about his hospital experience in the past tense and has become more...

He is now able to talk about his hospital experience in the past tense and has become more...

Age at interview: 68
Sex: Male
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But I'm talking in the past tense now. And that's another important thing, you do get to the point where you talk about that experience in the past tense. Grasp that opportunity when it comes your way, to talk about it in the past tense. It will come. For me it's taken five months before I start talking in the past tense. But once that happens, that's another important threshold that you cross.

What's it done to me? It's made me a much more patient and tolerant person. I regret that the society of which we are all members doesn't see people who have a physical need. They walk right through you. My experience of walking out with a stick on the high street is, "So you've got a stick. Do you really need a stick? Get out of my way". And it's made me much more sensitive about that. 

Several said they'd made or were planning to make changes in terms of work, some wanting to do more meaningful work or 'give something back' (see 'Impact on work'). Others made changes to affect their physical health. Some stopped smoking, changed their diets or exercised more. One man, who wanted cleaner, fresher air because he had asthma, moved to a house by the sea. Another said that he'd gained more weight than ever before and looked better for it.

 

He looks better than before his illness because he has stopped smoking, gained weight and eats...

He looks better than before his illness because he has stopped smoking, gained weight and eats...

Age at interview: 46
Sex: Male
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I think everybody says I look better now than I ever have done because I don't smoke anymore you see. I'm a weight I've never been before, put a lot of weight on, cheeks and you know, because I've always been ten stone four since I left school. And I'm forty what am I now, forty-six now, I know I don't look it but I am. And I've been ten stone four since I left school. All my life, I eat and drink beer and never put weight on. Now I'm nearing twelve stone. I've not smoked for nearly twelve month and that's probably to do with it because I'm eating a lot more.  

So I've just put weight on and I have pictures I could show you, what I used to look like to see this, and everybody says I look better than ever. In fact last night I were at pub and one of the lad's went, "Are you coming this way?" He's a Pakistani lad who's a mate of mine, known me years. He said, "I've just been watching you up here, I don't believe how you now look now," how I used to look. He said, "You looking better now the way, then when you even..." That's what people say to me. I look better, funny that innit?  

That's good, and you gave up smoking, you are eating very healthily you mentioned before the interview, you're eating lots of fresh fruit and veg?

And fruit, yeah, well she [wife], basically I eat all the proper stuff now.

One woman said that, although she now appreciated life more and wanted to focus on enjoying it, her husband's experience had been completely different to her own and he was less keen on the changes she had in mind. She also felt more afraid of growing old and losing control.

 

She wants to downsize and enjoy life more but worries about growing older.

She wants to downsize and enjoy life more but worries about growing older.

Age at interview: 55
Sex: Female
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So there was two things I wanted to do, was to sell the house, downsize, and if I can, change job. But first of all I wanted to sell the house, downsize, and get that sorted. The only problem is, although he [husband] was busily nodding, I've still got the same problem, is that he's fixated. His experience hasn't been the same. I really don't want to carry on with the way that life was. It had gotten into a rut and I realised that life was passing me by. I don't want that to pass me by any more. I want to do more with my life. And if I can help anybody, I even thought I'd give up work and I'd go and train and be a nurse. But I'm a bit old. I did consider quite seriously, still have considered, whether there is something I can do in a hospital to mitigate against what happened to me. Could I be a nursing assistant in Intensive Care? Would I be able to do that? I can work nights then as well, carry on working nights, because I do like nights. But, do you know? that kind of thing. And I've thought about it, but money comes in. If I could downsize then I'd be able to do that, because money does come into it. I couldn't earn enough being a non-professional in the NHS. It would mean downsizing just a bit too far. The pension fund still needs filling. So that's what I'm thinking. The only thing I have to admit is, so that's the positive side. The negative side of it is the terror that I've got now of getting old. I have a, I really am anxious about that.  

Because of the experiences you've had?  

And the fact that you lose control.

For some, the ICU experience strengthened or re-ignited their passion for their spiritual beliefs, re-affirming the importance of life and their purpose in it. One man said his experience had encouraged him to meditate.

 

His critical illness strengthened his faith and he now wants to share his experience and...

His critical illness strengthened his faith and he now wants to share his experience and...

Age at interview: 30
Sex: Male
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Has the whole experience, because sometimes people do say - has it changed the way you look at life, or...?

Immensely [laughs]. Immensely changed the way I look at life. Immensely. And since then, yeah, I've got to be focusing more on - because I've got to use that experience as a, like a testament, that there is a god. You know, the whole world thinks that there isn't a god, so I've got to use that as part of a testament. Because I said, you know, man can tell you one thing, and man can do one thing but at the end of the day the ultimate authority and ultimate power is in the hands of god, so now, the experience I had just confirms that yes, there is a god.  

Yeah. Has it changed the way you live day to day in any way?  

It's brought me closer to, like God - in what terms do you mean has it changed my lifestyle? Is it more spiritually or...

Spiritually as well, but some people have said they now value every day more, and if there were things that they wanted to do which they might put off, now they're more likely to do them?

Absolutely, absolutely. That is the case, yeah. You take every day obviously, obviously I enjoy - you're still alive so, you know. And it's like I'm alive now for a purpose. I'm alive now to teach people on many levels, to show them from this experience that you can come out of it.

Some people said that, when they first recovered, they made changes to the way they lived but had 'gone back to normal' with time. One of these people said that, often, it was only when he looked at his ICU diary that he remembered what he'd been through again.

 

He and his family treated each other differently for a while but they have now gone back to normal.

He and his family treated each other differently for a while but they have now gone back to normal.

Age at interview: 46
Sex: Male
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So since you've been in intensive care and come back home, you said you'd got a second chance of living life. Are you living life in any different way or has your life been changed in any way or not really? 

I think it were at first, but now I'm back to, I forget, unless I look at my diary I forget because you don't want to think about it. And I can see me reading that [diary] and I start crying. I think I'm back just normal, but I still like think oh I'm lucky, so back to arguing with the Mrs like used to and shouting at kids again and you know. I'll never shout at them. You say, " Oh I'll never have an argument with you again if I get out of hospital", like you say, but you're back to like. She'll shout at me when she wouldn't do when I come out, you know. It's everybody's pussy footing around me and being nice and now it's, "Oh give over dad." And yeah or it's back to normality. I think everybody wants to forget that part because no, no it weren't a nice part of our life with the, we'd already put up with a load of it with her [wife's] breast cancer. Then we go through this with me, so I think our family's had enough of hospitals and dramas and so we just try act normal as though nothing's happened. 

Some people said their experience of critical illness hadn't led them to making any changes and that, after recovering, they were keen to resume life as normal. Others, who were still regaining full strength and mobility, said they looked forward to getting back to the life they had before their illness.

 

He has had to learn to be patient but will be living life as normal once he is better.

He has had to learn to be patient but will be living life as normal once he is better.

Age at interview: 60
Sex: Male
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Patient' In the end it did change my outlook. I did go, didn't have much choice really but I mean my patience was a lot, lot more. It's still good now at the moment but I don't think I'll stay like it, for a little while. As soon as I can walk about again I think my impatience will come back again 'cause that's what I am naturally. I hope anyway 'cause I wanna get back to as I was.  

Wife' I don't think it's really changed my outlook on life at all. I think that I'm really looking forward to just being back how we were and I don't think it'll take long to forget. 

Patient' I agree, I agree. 

Wife' I really don't.  

Patient' Yeah, no I agree on that, it's not actually anything we've discussed before is it?  

Wife' No. But it's only been two weeks and already it's - 

Patient' I don't sit here thinking about Intensive Care. I noticed for the first few days, talking to the carers, I might have talked about, "Oh when I was in Intensive Care, when I was doing this and when I was doing that and this, this, this, this." And now I hardly mention it, it doesn't, it's a thing of the past already. Not for any bad reasons 'cause they were fantastic but we had, we've got a good life and...

Wife' And we just want it back [laughs]. 

Patient' We just want it again [laughs]. And we had a terrific life but things were gonna change and I was gonna retire at sixty and not do so much work, which is one thing I do enjoy doing but...  

Wife' You'll never give up completely.  

Patient' Oh I'll never give it up no, but I was gonna retire and do a lot more time off. So we've got that to look forward to, say from this October onwards, and do things. But it hasn't, [sighs] it has changed our life a little, well only from the fact that it's messed up our life really hasn't it? For the week, the year, nigh on the year now so. 

Wife' I'm just looking forward to getting our life back and that's... 

Patient' Yeah well we'll always look forward, don't look back, look forward and don't worry about what's happened back there, what is coming...

Wife' What's coming is important. 
 

For some, other effects on daily life included fears about getting ill again. A few felt that they'd moved on from their illness but they didn't want to forget that it had ever happened. While difficult, it was a part of their lives and 'not something that ever goes away'.

 

She now sees her ICU experience as a part of her life and a part of who she is.

She now sees her ICU experience as a part of her life and a part of who she is.

Age at interview: 35
Sex: Female
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But you know, I realise that that's not actually the way that you can deal with these things and that actually, you know, that it was a major, major trauma. And that's not going to go away. And actually from, you know, from this perspective I don't want it to go away. I mean it was an awful, awful thing that happened but that's kind of part of life's rich pattern as it were and I'm very lucky that I came through it. And you know, it colours, you know it sort of coloured the last two years of my life and it will continue to kind of colour the way I lead my life from here on. But I've kind of, I'm happier with incorporating it as an experience into who I am than I was at the time. I mean at the time it was a real kind of, it was another box to tick off to try and get through everything. In the way that being able to tick off walking down the corridor or swallowing a cup of tea without choking, being able to have a shower by yourself were kind of boxes to tick off to the road to getting better.

Last reviewed August 2018.

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