Attitudes to life after the hospital experience

Here people talk about their attitudes to life after having a relative, partner or close friend critically ill in ICU. Experiences ranged from those who’d made lots of changes and valued life differently as a result of what had happened, to those who’d wanted to carry on with life as normal.

Many people said the ICU experience had made them realise what was really important to them and put life into perspective. Having lived in the uncertainty of not knowing whether the ill person would survive or be brain damaged, disabled or paralysed if they did, had made small, trivial things in life seem unimportant compared to what they’d been through. Some felt they were now more relaxed about minor, every day concerns that might previously have bothered them.

She takes every day as it comes, and feels that other people have far greater problems than hers…

Age at interview 59

Gender Female

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Ive looked at life a lot different and taken each day as it comes, whereas we used to plan quite a bit in advance, maybe a holiday for instance which was a nice thing to do. I live really now from day to day and if we do go away then it would be, well well go away next week or well go away tomorrow rather than do it a year in advance because, you know, life is so short you just really dont know. And I try not to take things for granted so much. Until something like this happens in your life, you know, you do say, What? Why me? Why has? But there are so many other people out there with much bigger tragedies than what us as a family, to us its our tragedy, but you know, weve been through another tragedy with friends who have lost their husband, child and another ones maimed for life, thats the whole family wiped out. And life is like this all the time so I dont just think of me.

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Many people said their experience of having a relative or close friend in ICU had made them value life more and they now wanted to enjoy it, live it to the full and make the most of every day. Others said, instead of putting off the things they enjoy, they’d realised the importance of doing them now because no one knew what the future held. One woman’s husband had died suddenly and unexpectedly several years before and she’d decided then that she had to make the most of life and every day. After her partner’s recent critical illness, this perspective had been reinforced. One man said that he and his wife were enjoying making the most of their life together but people around them had often found their new way of living difficult to accept.

Their son felt they’d changed for the worse now that they were living more for the moment.

Age at interview 57

Gender Male

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My wife has certainly changed since the accident and funnily enough it’s sometimes, it can be quite a burden for her. I don’t know how to explain it. Yeah we don’t, we both don’t see, we see life in a different manner now. We look after ourselves. We choose our priorities.

Sorry my minds gone blank on it. I don’t know what, how to put it.

You mentioned that friends or family members have noticed that you’ve changed a lot as well?

Yeah I think my son more than my daughter. He thinks weve changed for the worse.

How?

But I don’t think, we don’t think we have. We think weve changed for the better because were seeing life as it should be. You look after your health.

Well the way weve changed, both the wife and I, we see life in a different perspective now. Material things don’t matter any more. Health is most important, looking after each other. And we found it difficult with our children especially our son who finds it hard to accept the way weve changed. I can’t answer what hes thinking. But he has, hes gone distant to us now. We don’t know why.

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Many people said they’d become less materialistic and had realised not only how precious life was but so too were the people in their lives. Some said the ICU experience had made them value or be more grateful for their family, partner, children or friends. Others said they’d become more family orientated, similarly others said that they’d renewed relationships with siblings that had drifted over the years, especially if they’d had children. Several said they’d grown closer to their partners, and one man explained that he’d grown closer to his partner and her family and it had made him see how relatives can support one another.

His partner’s mother’s illness had brought them all closer together and it had shown him that he,…

Age at interview 38

Gender Male

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I envy in a sense [my partner’s] family, because that’s how families should be. It hasn’t made me any closer to my own family. I’m still very distant. You know, I don’t really see my father, my mother or my sisters. We don’t really get on. So it’s changed my outlook on life. I believe you should live day by day. Take all the good things that come to you. You know, enjoy it. Because you never know what’s round the corner. My outlook on life is a lot different. I would say, you know, I used to be a workaholic and I just wanted to make money, be successful and be rich and now that’s not my priority really. You know, I want to have, I want to develop a family life with [my partner] and my daughter as close as this family is. So, yes, it has changed me.

And is there anything else that was important to you over that time up until now that I haven’t asked you about?

I don’t know. I think the family unit is important to me. I’m still very, you know, opinionated that she doesn’t get proper treatment now, that still gets to me. I’d have thought she would, even now, have gone back for an X-ray to see what’s going on. But theres nothing. I don’t know. I just go day by day now. I don’t look too far into the future. Having [our daughter] has perked [my partner’s mother] and [my partner’s father] up, you know, they’re brilliant grandparents and a bit of joy in their lives.

I’ve learnt I’m more compassionate than I thought I was, more caring. I’ve always thought of myself as quite a selfish person. So I’ve learnt that I can care for people, I can help people out. I’ve actually learnt a lot about my emotions. You know, theres nothing wrong to cry as well. Very old-fashioned, men don’t cry. But it’s all a load of rubbish. Yes, my emotions, I’ve learned a lot about my emotions and things. I’ve learned that I’m not particularly a bad person, you know.

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He grew closer to his sister because they spent so much time together when they were visiting…

Age at interview 52

Gender Male

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Has it made your family or just you as a person look at life differently at all? Did you think about or all talk about maybe once things are better wanting to do things differently or value things differently or some people say they want to live more for the day’?

That has always been my outlook on life because I started my career twenty seven years ago. I’ve seen people lose their lives so I live for today. You know. Money means nothing to me. So that is important to me. I tried to encourage my Dad to spend a bit of money and he decided eighteen months ago ‘I am not going to going abroad on holiday again’ and this that and the other and you are cajoling him, ‘Go on’ Life doesn’t stop because you’ve been in Intensive Care. You look much better now than you have ever looked in your life. Well in the last year at least for definite. As a family we are much closer, particularly me and my sister. We are really close, which is brilliant. She is really good.

How has it made you closer since that Intensive Care period?

Just the experience of having to go through it as a brother and sister, close together, talking, talking about things that were to do with Intensive Care and things that weren’t, that are important to us as a family. So that was really good. A lot of positives came out of Intensive Care. No negatives when you think about it.

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When their car was written off she was able to keep it in perspective because it was…

Age at interview 37

Gender Female

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Has the whole experience, some people have mentioned this, made you look at life differently. Or you are back to as you were before?

No. You do look at life very differently. Because, I think you appreciate life much more. And the little silly things just don’t bother you any more. I know sort of five days after he came out of hospital, our car was parked in a lay by outside in some friends house and somebody wrote it off. And it was just oh well. I mean you like to think that that is how you would have reacted six months before. But this was ‘there you go, it doesn’t really matter does it. It is a lump of metal. And you do get very much like that. ‘Well they can’t kill me for it. And you know all the minutiae of life that you get bogged down in, all of a sudden isn’t important.

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Many people said they’d re-evaluated their lives. One man said he and his wife had decided to move to the country and spend more time with their children and grandchildren. Several said they’d made or were planning to make changes in terms of work, some wanting to work less or in less stressful jobs or environments.

Since his wifes illness, he wanted to work less, live somewhere quieter and spend more time with…

Age at interview 66

Gender Male

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It made me take stock of what I was doing because I was indulging myself by continuing to work and I realised that there is more to life than that. And you can have as much pleasure and satisfaction and probably give more if you just take stock of what you are doing and be sensible about it. And that is what we did and the whole thing sort of came to a head early this year and we decided that we would move, sell the house and move out into the country, which we have done.

We have been going out since we were 15, so we are permanently joined at the hip and I think to say we got closer, perhaps no, that is not true. I don’t think we could have got any closer. I think what it made me do was realise that perhaps you do, however close you are, you do take advantage of each other’s generosity in married life and I was perhaps taking too much advantage and my wife didnt realise in terms of indulging myself. Work at that point was a hobby. It was something I wanted to do and that is what I was doing and it was, when I look back, it was costing me in terms of time with my wife and children but I didnt realise at the time. Nobody realised at the time. And when this situation occurs you take stock, you do balance things out. And you think I am being selfish there, I don’t need to do that and also it does throw into sharp focus your own mortality, which you never think about and my word you really do then.

And you think about it then, that I am going to take every advantage of every day I have got left now with her. And we do. I mean things like, I would never go shopping before for women’s clothes, never. Now I don’t moan as much about it. I go but I would never have gone before. And I want to be with her more because I don’t know how long I have got her for, having been there to the edge and then come back. So you do, I think it does put that sort of thing in perspective very clearly and you do take more stock of what you’re doing and why you’re doing it. And you think perhaps I could change and perhaps we could have a much more beneficial life if we did this, so that is what we have done.

And you mentioned that you see more of your children now as well?

Yes we have a routine now where we see my daughter’s children once a week. My wife goes up there, and this is rather funny, she does their ironing and I do odd jobs. And they range from a variety of things, well not go into that, fixing the loo seat and things like that, that have been broken for weeks because her husband’s too busy to do it. So we replaced that. So we do that once a week. That is a regular routine. Were now into the school pantomimes and festivities, so were up twice a week now. And my son who has just had his second son, we tend to go there every third, every second or third weekend and stay over there because he is in [place name]. And stay over there so they can have time to go out and my wife gets up and feeds the baby at night. And she loves it. She just thinks it is wonderful. Everyone else is dead on their feet and she is there feeding the baby at 3 oclock in the morning and she thinks it is wonderful. So we do that. And I think that, had this not happened, I would have been so busy, Oh I cant be bothered, I have got this to do and I wouldn’t have done it and used work as an excuse.

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Since her sister’s illness, she has found a new, less stressful job.

Age at interview 34

Gender Female

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Did it have any effect on how you were working or anything?

I think, yes, it probably did, in that my sister who got ill was someone who worked extremely hard and would work sort of from 8 in the morning till, and be in the office till 8 or 9 at night. A very stressful job in advertising. And sort of being about, I’m about eight years younger than her, and seeing her get to a point where she was just so stressed out by work. And then, you know, this actually hadn’t been very well before this illness happened. Shed actually been off work with depression for a few months. And shed only just gone back to work when she got this illness. But having seen her go through, you know, probably about, well, now maybe about two years of illness, I just thought, you know, ‘Lifes too short to sort of let yourself get caught up in something like that. So I think probably, yes, it did, in that I definitely made a decision that I didn’t want to be kind of working, you know, that obsessively at all. And I have now just, well, just left that job and just got myself another job, which will be hopefully much easier hours and not as stressful. And, yes, well, I think it had definitely sort of changed a few things.

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Some people said that having a relative or close friend critically ill in ICU had changed them as people, a few saying they were now more open about their feelings. Some felt they’d become more patient, others that they were less bothered by minor problems. Some observed that not only had they changed but so too had the ill person and other family members. One woman said she and her husband had both become more relaxed since his illness. One woman said that her brother had become more grateful since his accident, he now valued his life more and the people in it.

She and her husband now have a better perspective on life and he has gone back to being the…

Age at interview 42

Gender Female

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I think I do tend to look at life differently. I tend to kind of go with the flow a bit more and try not to get too deeply involved with things or get too wound up about things that you have no control over. I tended to be a bit that way before anyway you know, with, if I had no influence over something there was no point in worrying about it. But now it is a case of if I want to do something, whereas as before I might have thought oh well I cant really afford it or it is a bit of a waste of time, I could be doing more important things and so on. I go for it now because you just do not know what is round the corner. Saturday morning [my husband] was fine and Tuesday night he was fighting for his life. You know things like perhaps a car crash or something they are easier to deal with because it is something that – it is an accident but when it is an illness and with the unpredictably of it all, there is just a lot to deal with.

I think we both probably look at things a bit differently. In fact [my husband], he asked me the other day had he changed since he had been ill and I said, Well you have got your sense of humour back. Before he finished work he was getting very stressed out with work and things and with the threat of redundancy hanging over him. And then he reached a milestone birthday which if he would have been made redundant before that he wouldn’t have got very much, whereas afterwards it would mean he would be able to draw his company pension. So then he was sort of willing it to happen. And it wouldn’t happen. And he was getting stressed out the other way. But now he is back to being to the man I married, which is nice and my good friend who was such a support during [my husband’s] illness said, I can see why you married him now. He has always been so quiet since I have known him. But he is quite fun isnt he? [laughs] So for somebody else to notice, it must be a marked change.

So he has gone back to the man that you married. Has that changed your relationship?

It is more fun again now. We have always had a good strong relationship and we have always been able to talk about things with each other. And although I can be very serious and professional and things at work, I am actually quite daft outside work and do silly things and silly voices and pull faces and things. It’s just a bit of fun and he actually joins in now and things. Which he used to but he had got sort of quite withdrawn and down about life in general I think. And sort of having been made redundant that started to come back. And then he was ill. And since he has been reasonably fit again following his illness, he is quite fun and we just do things spontaneously now, whereas one time it would be, I ought to be doing this, and I ought to be doing that. But now it is, it will wait. Mostly things will wait. So it is good.

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Some people had made changes, such as stopping smoking or eating healthier, either to improve their own physical health or because they’d wanted to help the ill person in making these changes.

For some, the ICU experience had strengthened their spiritual beliefs, which had helped them accept or understand what had happened (see ‘Support and information‘).

Some people said that, when the ill person had first started improving, they’d wanted to make changes to the way they’d lived but, with time, had ‘gone back to normal’. Others felt that their experience hadn’t led them to making any changes and, after the ill person had started recovering, they just wanted to get back to normal. Some said that they would have liked to resume their former life but they couldn’t because the ill person hadn’t completely recovered and now needed a lot of care. After her best friend had been discharged from hospital, one woman said she’d become her carer and hadn’t had time to think about whether the ICU experience had changed her attitudes to life. Her friend’s health was worse than before her illness and this often left her close friend feeling depressed. Another said it was too soon to tell how her son’s accident had affected her attitude to life because he was still recovering and needed her support. Several people, whose relative’s health was now worse than before their illness or accident, had had to make many changes to their daily lives and this had often been difficult or stressful. One man said he’d become his wife’s full-time carer and this had been extremely difficult because they had very little support (see ‘Emotional impact on family and friends’).

 

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