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.
Partner' We haven't changed things dramatically, we haven't taken up bungee jumping or anything like that.
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...
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.
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...
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...
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...
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.
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...
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.
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.
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.
Last reviewed August 2018.