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Intensive care: Experiences of family & friends

Relationships within and between families

Having a relative, partner or close friend critically ill in ICU is a crisis situation that can affect the whole family. It can be an extremely emotional time and, for some, 'a roller coaster' of highs and lows when the patient continually improves and deteriorates again. Living in the extreme uncertainty of not knowing whether the patient will survive or what the future holds, affects people in many different ways as well as their relationships with others. Here people talk about the impact on their relationships with partners, relatives and friends when someone close to them was critically ill. Experiences ranged from those who felt they'd grown closer to people or individuals, to those who felt relationships had become more strained, tense or difficult. 

When the patient was first admitted to intensive care, roles and responsibilities within the family often had to be changed to enable relatives and close friends to visit ICU every day. Some said the intensive care situation had brought them closer as a family, often because they'd had to support one another through a difficult, distressing time. 

 

Two of her sisters hadn't been getting on very well but, when one of them became critically ill,...

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Age at interview: 34
Sex: Female
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I think they [relationships] have changed. Because there was actually I think a point before my sister got ill that she and one of my other sisters weren't getting on brilliantly. They'd been very close for a long time, but they'd sort of fallen out over something a bit. And to the point where, when they took her into Intensive Care, I think my elder sister was unsure whether she should actually be going with her to Intensive Care, because she wasn't sure whether my other sister would want her there or not. But, you know, as it turned out, I think once she was in Intensive Care her elder sister became, you know, her main support. So having sort of not really spoken to her much for a long, you know, for a few months, or not been that close to her, suddenly again they became very close. So I think, yes, I mean certainly I think a lot of things, you know, did change, some things. 

I think probably inevitably relationships with the family have been strengthened. I mean I don't necessarily see them a lot more than I used to, but I probably communicate with them more regularly than I used to. So I think, and I think probably the relationship with my partner has, you know, sort of changed as a result of it, for the better probably. You know, that we ended up talking about things that we might not have talked about otherwise.

Since the patient's critical illness, many found that they had more contact relatives, especially by phone. They'd grown closer to each other when visiting the ill person and still kept in touch once the patient had started recovering, even if they hadn't always been able to meet up. 

One woman said that, since her brother was critically ill, she'd kept more in touch with her nephews and nieces by text and now feels closer to them. Another said that her parents-in-law had helped and supported her a lot while her husband had been critically ill. Once he started improving, this had meant that she'd been able to return to work part-time and have a break from ICU for a few hours. One person said he was now much closer to his partner and her family, and another that she'd grown closer to her daughter, having spent so much time with her when she'd been in hospital. Some said they'd become closer to their partners and two couples had got engaged when the ill person had started improving. The illness had made both couples realise just how important their relationship had been.

Some explained that people had reacted in different ways to news of the patient's illness, with some becoming closer and others more distant. Several said the critical illness had shown them who their 'real' friends were because they'd visited or given support at the time they'd needed it (see 'Sources of support in ICU'). 

Some people said that, under the extreme stress of the patient's illness, there'd been times of tension between families. Some felt that, when their partners had become ill, there'd been tension between them and their partner's family. A few felt that their partner's family hadn't always understood their point of view and it had often been difficult to spend any time alone with the ill person in ICU. Some of these people also felt that they themselves had had very little support because their main source of support had usually been the ill person. 

 

She felt that her partner's family didn't understand her feelings but received a lot of support...

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Age at interview: 24
Sex: Female
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It was hard to sort of, we didn't, we all get on and are close, but at that time it was hard to, some people just acted so differently. People think that I didn't understand because I was happy rather than, not crying all the time. And it's hard to sort of try and explain how you feel. Even though everyone's going through the same, it's so, and it's different because I'm like the partner. And the mother - it's different roles. So that was the hardest thing, trying to understand. And it did get a bit tense between people, because you just feel, I don't know, that you feel worse than them or they feel worse than you. That's the hardest thing to deal with as well. 

My family supported me like 100 per cent whereas my partner's family, it was a bit tough because I suppose at the time all the families grouped together and I was a bit outside of all of that. Which in a way I liked because I wanted to be on my own. But then when you wanted somebody to say, 'Are you okay?' it was a bit hard, because they all supported each other. So it was a bit, but the nurses dealt with it quite well and they arranged visiting so you could have your own time because sometimes I just wanted to be on my own with him, but his mother would always want to be there, or something like that. It's hard because you all want to do the same, but, though it does put a lot of pressure on everyone's relationships. That's what I found. 

Yes. And if someone was in the same kind of situation now, is there anything you would advise them or any message you could give them, with hindsight? 

I think the thing that I was worried about was causing arguments. And everybody's so tense and everything. But I think you do just have to express how you feel. Because a lot of the time I used to just say, 'Oh, it's fine. Let them visit'. But deep down I would want to be on my own, so I would just say, just make it, if you tell the nurses, they could arrange it. That's what I found. Because when I first raised it, it did cause an argument. Whereas the nurses were like, 'Well he's tired now, so if you can leave him'. But then they'd let me in and then they'd do the same for him. So I ended up using the nurses to help me and talk to, rather than the family. You just need, maybe you just need some time, somebody that's not involved. Which I found really, really helpful. So definitely, and that's what they're there for, they do say like, 'We'll talk to you and we know how you feel'. And I think they actually do. Even now I find that a great help. Even now I still speak to them now and they ask how the family is, because they go through it and see it all the time. I think it's quite common. Even if you're a close family, it does cause a bit of friction I think. 

And did you become closer at all in terms of the two families? Or after your partner was better it was back to how it was? 

If anything it has, the families were quite close but now they've gone a bit more distant. Because he was so poorly, I think at the time it's either going to bring you closer or, because you really see, like his friends as well, you could see who were like true friends that really cared. And it's quite a horrible time actually, because you get to see what people are really like compared to what you think. So the families have gone a bit distant. Even with my partner, he seems to be a bit more distant now from his family because of things that happened, which is a shame. But it's nice in a way because you really get to see who cares for you and who doesn't. Which is harsh but is true. 

 
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He wanted to have some time alone with his partner and often felt isolated because she was the...

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Age at interview: 35
Sex: Male
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I love my partner's parents were very, very dearly but at the time, my partner's time and my time was on our own, it's not with other people there, her parents or my parents. So all I wanted to have, either if my partner was in the land of the living or not, all I wanted to do was have time on my own with her. So, we could just be one, just like, I mean it was the closest thing to normal really. But from my side the hardest thing is I think certain people, certain relatives and families, they didn't really understand this was, that from my side the support I have is my partner. And if I have any problems, if I have any issues, I talk to my partner like she would talk to me. And, fine you have parents and other family and relatives and stuff around, but she is my first port of call. And obviously because my partner was the one who was poorly, I couldn't talk to her. And all the time whilst I was sleeping in the chair at the hospital, my partner's parents were coming back to the house and staying in our house. And, you know, they had each other to support them. My parents had each other to support them. And don't get me wrong, my partner's parents and my parents were being supportive to me as well, but that's not what I wanted. 

So I think, that was quite difficult in the sense that, I think I probably closed down a little bit. And I tend to be quite a closed person anyway, but I think I closed down a little bit on various people and shut them out and stuff like that because, at that time it was the way I dealt with it. Whether, with the benefit of hindsight I would have probably dealt with it slightly differently. 

The only other relationship that I guess may have changed is, this is something that is definitely repairable, but my relationship with [my partner's] parents I guess. There are certain things that happened during, I mean I suppose we were thrown, everybody was thrown into a really awful scenario. And they'd had the love of their life for 32 years thrown into a catastrophic position. I'd had the love of my life for only the last three years thrown into a catastrophic position. But they had each other. I didn't have anybody. 

And the other thing is that they obviously wanted to be with my partner as much as they could as well. But I was sitting there thinking that, 'I know she's your daughter, but she lives with me and she's chosen to make her life with me and, I'm with her 24 hours a day every day. Because we work together, we live together, we do everything together'. 

My partner's mum and dad, I know they've had her for a long, long, long, lot longer time, but they don't, they'll get a call or a text every day and, see her maybe once a month, twice a month maybe. And I felt a little bit crowded and claustrophobic and didn't have a chance to, silly things like, really silly things like, putting bloody hand cream on my partner's hands. You know, and I would do that and then I would go. But then her mum would do it again and by the end of it, what we were trying to do was, try and keep on top of my partner's hands and just give a little bit back but her hands were buggered, they had like seventy-five layers of hand cream on them when she'd got better. And just little things like that and little things around the house.

Although some people had valued having other relatives staying with them at this time, others had found it difficult. 

 
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He found it difficult having his partner's parents staying with him while she was ill, and became...

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Age at interview: 35
Sex: Male
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I found it quite hard, and if my partner's mum and dad ever listen to this, 'I love you dearly', but I found it quite hard them living in the house. I mean it's a house we'd moved into a week and a half before my partner fell ill and it was a place that we were going to make into a home. And I found it hard them living here when we weren't living here. I found it hard that at certain stages, people were trying to understand how my partner could have got ill and thinking, 'Is it anything to do with the house?' and things like that, when it, it became clear that it was nothing, you couldn't pinpoint where my partner got her illness from. She could have been passing someone in the street, it could have been while she was away on holiday, it could have been anywhere. 

So I found aspects like that hard. And I think my problem was when, I probably wasn't acting as rationally as I would normally do. And I think certain things bugged me and they bugged me for the duration of my partner's illness, and I found it difficult to park them. And I think that, I don't know whether that is a natural thing that people have you know, because life is just so different, you do latch on to certain things. But, yes, that was a frustration. 

They were coming back and living in our new house that I'd never, by the time my partner had come out of the hospital they'd lived in my house five times more than, in fact a lot more than that, yes, I think five or six times more than I had. And a lot more than my partner had as well. And I think this is one of the things that I probably would have done better if, I don't want to say if this ever happens again, I'd try and react, I'd try and be a little bit more tolerant I guess. I think I was a little, a bit of a moody guy at times. And I should have perhaps tried to be a little bit more tolerant to what my partner's mum and dad were going through. I tried really, really hard and I think in some aspects I was, but it just got to the stage where it was difficult.
 

She found her brother-in-law difficult to get on with and sometimes felt put upon when he and his...

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Age at interview: 42
Sex: Female
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During this time [my husband's] mother and his brother were staying. And talking about feelings and support I actually found his brother really quite difficult. And he kept saying, 'Have you got this at home, have you got that at home. Have you got any''. The one that sticks in my mind which is silly, 'Have you got any bacon?' [laughs]. So I said, 'Well there is probably some in the freezer'. Whereas normally at home we don't use sugar in drinks, take sugar, but there is some and it was in the cupboard, in a clear glass jar, and the second time he came back he said, 'I still can't find the sugar.' 

So when I got home from the hospital, having had about four hours sleep in the last 48 hours, I then had to label everything in the kitchen, get all the things out. I spent about two hours sorting stuff out and I was so angry and so tired. And it's probably coming out in the way I am delivering this in the fact that I still a bit resentful about it. And [my husband's] brother came back with his Mum to the hospital to relieve me, he said, 'Oh and I've cleaned the top of your cooker for you.' And I thought 'that's kind'. And then he went on to say, 'But it was rather filthy'. Considering I had spent the last I don't know how many hours actually at the hospital and not at home, worried about my husband who was fighting for his life, I thought the state of the top of the cooker was really rather irrelevant. And he could have just left it as, 'I did a bit of cleaning for you' and I would have thought that was really nice. But no. 

I know it is [my husband's] Mum's son and his brother's brother obviously, but [my husband's] brother has still got his wife and his son. His Mum has still got his brother, but I didn't have anybody. So my family is not around. Although I have got very good friends and my friends were really wonderfully supportive and really good. But I did feel that his family were taking advantage and particularly with his brother and that was a problem. That was really all the way through his time in the Intensive Care bed. And certainly into the high dependency bed, when I said in the previous tape that I felt that his brother was very selfish. 

One woman said it had been extremely difficult for her when her partner had become critically ill because his parents hadn't been aware of their ten-year long relationship. She not only had to deal with the stress of his illness but had also had to negotiate visiting times so she wouldn't bump into them. With the help of ICU staff, she'd been able to visit him when they'd gone home. After he came round, he told his parents about their relationship and they are now engaged. Many people praised ICU staff who'd helped ease tension between families and individuals. 

 

She grew closer to her partner and his illness made them both more aware of what was important to...

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Age at interview: 41
Sex: Female
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When he first got to ITU he was conscious, how scared he must have been because he knew how ill he was and what they were about to do. And he had a massive lung bleed, which he doesn't remember, but he might've at that point been thinking. 'Well where is she?' Very worried about the parent thing. And he did manage to say to the doctors, either I had to be next of kin and he made them realise how important that was and he told them that his parents didn't know. So they were fantastic about that. Because it's another thing for them to have to deal with, the staff. 

And for you?

Oh yes. It was just awful. 

Yes. So you were the next of kin? 

Yes. 

And how did you deal with the parents and everything? 

I phoned his brother when I got to ITU. I needed his telephone number because I couldn't' I didn't have the number. And so I just phoned his brother and said you have to get here. You have to get your parents here and I'm not going anywhere [laughs].

It must have been a shock for them because it happened so, so suddenly? 

Yeah. Yeah, they had all that to take in as well. But we didn't actually tell his parents until he woke up. 

A lot of people do say that it makes them look at life differently' have you made' you mentioned work, have you made any other changes to life or your attitudes towards life, have they changed or'?

Yes. Well he told his parents about our relationship. We've been together for ten years and they didn't know. And he's proposed and so we're going to get married. And we're having a wedding for his parents and then one for us. So it has' and I mean especially for [my partner] , who's now not living a lie to his parents, I think that helped his recovery enormously because you realise what's important'you know. And you want to shout at everybody else for not realising what's important [laughs]. I hope it lasts. I hope we don't go back to just you know, forgetting about it. 

Some people had been so shocked and distressed by the person's illness that they'd withdrawn and hadn't wanted to talk to other people, including other relatives. Some said they'd pushed other people away because they wanted to deal with what had been going on by themselves (see 'Emotional effects on relatives and friends in ICU').

A few people said they'd felt disappointed in the lack of support from relatives. 

 

Although they have many relatives, few of them visited or gave support.

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Age at interview: 60
Sex: Male
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Daughter' Certainly a lot of people like mum and dad's, two of their best friends, [friend's names] who go to church with them, like they are like family to me anyway in some respects. And I think they were a lot more supportive than any of, like our real family, which is sad in a way, because I don't think our family were very good. 

Husband' No. 

Daughter' They were rubbish actually [laughs]. 

Husband' [laughs] 

Daughter' They were terrible, shocking. 

Husband' I mean they all live a long, you know a substantial distance away. 

Daughter' But then occasionally you would see like these 400 brothers and sisters and extended cousins, greatly extended cousins weeping in the corner. Which was taking up the waiting room. But then there was just us. Like mum has got five brothers and sisters and only one of them really came up. 

Did they understand how seriously ill she was? 

Daughter' Yes, yes, absolutely. We told them. I felt a little bit irritated about that. But not for me, but for mum I think, more than anything. It felt a bit hurt for her, but then you also felt a bit philosophical, like if they can't handle it, it is their problem and you know we have greater things to be dealing with most of the time I think. 

One woman, who hadn't been close to her sister-in-law, said she'd learnt much more about her when she became critically ill. She'd become her sister-in-law's next-of-kin because her husband had been abroad and had dealt with many practical matters. Sadly, her sister-in-law died after three weeks in ICU. 

 

She would have liked to have known her sister-in-law better when she'd been alive, and learnt...

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Age at interview: 70
Sex: Female
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I mean it had been, for me it had been a very important experience in getting to know her [sister-in-law], but it was a very bad way of doing it and a pity that it didn't happen when she was alive.

She was a great one for keeping up with friends. Which was something, I mean something I've always, I suppose if you said did it show me something that I've taken from it, is that actually, having been married all my life since I was 20, I've always been very self-sufficient. My family has provided me with everything I needed in a kind of way. And therefore I haven't gone out of my way to make a lot of friends and make friends with all the people who I come into contact with either at university or things I've done or my jobs. She's kept up with everyone. 

She's had rows with people, so there are some people who she dropped. But I was impressed by the way she handled being a single woman. One of the things I was absolutely amazed by, we were kind of nosing around, looking in a drawer beside her bed, I found hundreds of tickets for concerts going into the next few months. I was actually able to give these to someone. But I was, she'd kept going, she did things, she went to concerts, she went to plays, she went to lectures, she went to exhibitions. She, you know, she did a lot. She didn't sit, she was often very unhappy I think but she kept going and she worked hard at it. She had quite a lot of appointments for psychiatrists and alternative therapists and acupuncture or, you know, Chinese medicine people. I mean she felt a need to try to make herself feel better. So that there was a kind of, this paramedical side of it, but there was also this cultural side of it, which was very strong. 

Last reviewed August 2018.

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