A-Z

Intensive care: Patients' experiences

Impact on family

Critical illness doesn't just overturn the life of the patient - it also affects the lives of the family and close friends. When someone goes into the intensive care unit as an emergency, families, partners and friends often feel deeply shocked because they will not know exactly what has happened or whether the person will survive. One man said that critical illness and ICU were 'alien' to his family and that it had been a very tough experience for them. For more experiences see our section on 'Intensive care: experiences of family & friends'.

Most families spend hours waiting by the bedside - they may know little about intensive care and may feel as if they are in a confused limbo. Understandably many people are disorientated by the shock of finding the person they love in intensive care and, at first, may not be able to think about what the future holds or how much help and support they will need - their focus will be on whether doctors can save the life of someone they love. 

We talked to people who had themselves been patients in intensive care because of an emergency, as well as with some carers and other family members. Often those who had been admitted to ICU as emergencies only found out about what had really happened to them later, when they'd talked to their relatives.

In ICU
Understandably relatives feel shocked when they first see their loved one in intensive care. Patients often look very different from the last time relatives saw them. Their bodies may be swollen or bruised if they have been injured, and they may be attached to lots of equipment. Many people said their relatives told them later, often when they were at home recovering, just how shocked they were when they first saw them in intensive care, even when doctors and nurses had prepared them for what to expect.

 
Text onlyRead below

She and her husband were shocked when they saw their 14-month-old daughter in intensive care,...

View full profile
Age at interview: 37
Sex: Female
HIDE TEXT
PRINT TRANSCRIPT
And they took her [daughter] down to theatre to ventilate her, and that was a shock seeing her with a tube coming out. But what the most shocking thing was seeing, went in to look, see her and her eyes were taped over, which I knew they did. They [doctors] sat us down and said, "She transferred extremely well and she's settled into the unit." And while we were waiting for that, we had to wait for her to be ready for us to see her. We went in to see her and she just looked so tiny on this big bed. Luckily it wasn't a cot, so you had access to her. And she just had tubes and pipes and everything, which I could understand but my husband, I think he was actually quite shocked. 

Visiting policies vary in ICUs - some are closed to visitors for a few hours in the afternoon and some allow only one or two visitors to stay by a patient's bed. Most people told us that various members of their close family had stayed by their bedside almost all day, every day, but they only knew this because they'd heard about it afterwards. Close family were often encouraged to stay overnight, in the hospital relatives' room. This was usually only the case if the person was extremely ill and medical staff felt that s/he could die during the night, and when the relatives lived far from the hospital. 

Many relatives, including partners, had to take a lot of time off work during the first days and weeks, and 'normal life' and routines were suspended during this time. Many people said that the early days and weeks were extremely difficult because they didn't know what to expect or what the future held. Fear, anger, anxiety, depression, joy at good news were all common emotions within a few days or even hours. Some relatives we talked to felt that over the days and weeks they became very tired which made them even more emotional. Visiting ICU became the main focus of their lives and all their other responsibilities, including caring for children, had to be taken on by other family members or friends.

 

He stayed at the hospital day and night when his partner was first ill, and felt frightened.

View full profile
Age at interview: 46
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Partner' Basically I stayed in the hospital. I went into work about, it was the Tuesday night when [my partner] went, so early hours of Wednesday morning, I went into work Wednesday morning just to explain the situation, told them I wouldn't be back until she was better and then I went back to the hospital and it was a case of, I mean the girls are what 17 and 15 and so they're more or less capable of looking after themselves, so I just stayed at the hospital 24/7, coming home for an hour to get showered, checking the girls were okay. The family was brilliant, was popping in with meals for the girls to make sure they had stuff to eat, coming and feeding me in the hospital as well. But basically it was just literally a beside vigil wasn't it? 

For how long?

Well it was three weeks, till she woke up. So I was there every day apart from an hour every day in the morning, I was there 24 hours a day. Slept in a room upstairs in the hospital when it was available. When it wasn't available I slept at the bedside in the chair.

I was trying to be strong but there was times when I just I remember one day being with my mum and I was telling her I just felt so frightened, I was really frightened. I just didn't think she was going to pull through. I just felt I couldn't see it while I was there what I was going to do. But on the whole I think when she was ill I was just sort of quiet and kept to myself, the others were chatting and that but I just, I couldn't small talk. I couldn't indulge sort of thing when she was really ill. It was just, I was just losing myself in my thoughts sort of thing and waiting and hoping.

When someone is critically ill, one family member is designated to phone and communicate news to other relatives and to friends. Speaking to friends on the phone and answering the phone can be very difficult for partners / family members and was something some people wanted to avoid because they needed to have some peace and time to themselves at the end of a day at the hospital. One woman said that her mum had 'dreaded' making phone calls to ICU staff in case she was given bad news.

 

His wife found it difficult spending all day at the hospital, and then coming home and phoning...

View full profile
Age at interview: 33
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Patient' The one thing I would say on this subject, looking at it from [my wife's] perspective was you, from memory, got a lot of phone calls and a lot of people wanting to know how I was getting on which was, you know, lovely and it's nice to know that there's that concern out there. But I think when you were coming home, having spent the day with me in hospital, you were absolutely exhausted and you have sort of, eight or ten messages on the answer machine, one of the things I seem to remember you saying was, you'd get in and all you actually wanted to do is have some supper and have a bath and go to sleep, for example. And if you're not careful, you spend the whole hour that you've got to yourself, picking up the telephone and phoning the relevant people.  

So the advice I would give, looking at it from a different angle is almost, don't rely on the relative to do all the communicating because I think, certainly that was a bit of a pressure.  

Wife' Yeah I would certainly say that you know you, if you're a married couple and you've got two families and friends to communicate with, is just to have one key person on either side of the family, so you've got two phone calls rather than twenty phone calls. 

And they can tell other people?

Wife' And they can then spread the word. I mean I suppose the trouble with that is that it would be like Chinese whispers, with the story that you tell at the beginning, might, when it reaches, the last relative might be, you know, completely different. But at least there's communication going through. 

When their loved one began to improve, relatives would go home more often, for example to shower, get some sleep or eat properly. It was only when their loved one had made progress that their relatives felt comfortable or reassured enough to leave the bedside. Some patients talked about the relief and joy relatives felt when they'd came round and, day-by-day, showed signs of improvement. 

People told us that relatives had taken in personal items, such as photographs, that would help them feel better. Many said they didn't know how their families coped during this traumatic time, and were extremely grateful for all their love and support. Some only learnt how their relatives had felt when they read the messages of love and encouragement in their ICU diaries.

 

She cried when she read her ICU diary because she realised for the first time just how her...

View full profile
Age at interview: 47
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I had a diary, which I didn't understand properly at first. I knew there was this book that people were writing in, and I wanted to read it but I couldn't really do that at the time. The nurse consultant read it to me on the day I was discharged, and it was the first time I'd cried. I didn't cry while I was in hospital, while I was having the treatment or whatever. But the things that people had written, that my family had written really got to me. And I realised how hard it was for them. Because I was out of it for a lot of the time. And when they were sent for and told that I might not make it, and they spent the whole night with me and watching and waiting for progress reports, that must have been awful for them. 

And that, I wasn't aware of that, I was out of it at that point. And so it sort of made me aware, and also friends who'd come to see me, who'd written little messages in that were, you know, very poignant I think. And it just made me see what it was like for other people, which I don't think I'd considered. You're very self-centred when you're in hospital. Because everything revolves around you and the nurses are all, "Are you okay? How are you?" Your visitors come and ask how you are and they don't talk about themselves. And so you tend to think there's only you that's affected. And it made me see that this had affected everyone, and that upset me quite a bit.  

Thinking about the children and my husband and my mum and dad and all the people who'd been through all this with me, and probably suffered more than I had in some ways. 

On the general ward
Many people said that when they were moved to a general ward, their relatives were pleased they'd made enough progress to be transferred but they worried because they would no longer have the close monitoring and one-to-one care available in intensive care.

 

She was very concerned about the nursing care on the ward and about her husband's wound, which...

View full profile
Age at interview: 62
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Because obviously where they, when they take the oesophagus away and they join the stomach to the neck, the join is in the neck. And this join in the neck, this wound was starting to be infected. And I could see it was infected. You don't need to be a rocket scientist to see that. And when I mentioned to the staff in the ward there that I didn't think it was looking very good, it was like, you know, "Well, you know, there's nothing to worry about and we're doing our best. And although it doesn't look very good, we'll see if we can re-dress it soon." Not "now" but "soon". 

And then of course [my husband] was really, really fed up being in there, because I mean it's not exactly, it's not conducive from my point of view for someone to get well when you're in a situation, you're in cramped surroundings, you can hear what the person next to you is saying, it's not very private. Okay, I know that there's problems and we don't have the funding and all that but, okay, I understand that. 

Recovery at home
Many people said that they had been completely dependent on their relatives when they first came back home and needed help with normal daily activities. They said it was often a demanding and stressful time, particularly for their partners. One woman, whose husband had been in intensive care, said it was 'like having a child again' but she felt much better about looking after her husband at home than having him on a general ward. Some relatives we spoke to said their loved ones were 'different' when they first returned home from hospital and that it took time to adjust to their changed personalities or mood swings.

 

Her husband's moods and behaviour were hard to deal with in the first few weeks after he had come...

View full profile
Age at interview: 56
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
What nobody prepared me for was the fact that, we had, the first night in particular that he was home was absolutely awful. And, you know, he was almost, I mean he was sort of seeing things and hearing things and talking complete nonsense at the top of his voice, and being very physical, you know, and sort of lashing out. And no one actually had prepared me for that. And that's actually quite frightening in the middle of the night, to know how to deal with that. But he was in a very elated mood. I mean it was I'd say for the first week or ten days, and it was described to me by a doctor actually, when I talked to them about it, it's like, rather like living with somebody who'd had a drink too many. He was very disinhibited, not in a, I don't mean that in a nasty sense, but he was very exuberant and over-cheerful. 

And even if he, you know, met people he didn't know, that he was sort of terribly sort of jolly. And, you know, it was very magnetic but it wasn't him. And apparently this is actually, I was told this was very much a feature of head injuries, where perhaps certain inhibitions or restraints are loosened. But it was really very much like living with somebody who'd had a drink too many.

People coped in their own way with being back home - some families were very open about what happened, others were more restrained. Most people who had been in intensive care were concerned about the impact of their illness on partners, particularly when they were recovering at home and their partner was their main carer. Some said their partners didn't always talk about their own feelings, maybe because they were trying to be strong for their loved ones. Others felt that family members and partners were reluctant to discuss their illness and coped with what had happened by not talking about it. One woman explained that her husband had panic attacks after a few very difficult years. Another said that, although her husband 'wasn't the sort' to talk about his feelings, the way he behaved showed her how much he cared and was glad to have her back home.

 

Her husband talked more about his own feelings when she'd recovered, and is still dealing with...

View full profile
Age at interview: 35
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
So he [husband] obviously wanted to see me get well as much as possible so he was very, he didn't talk about things a lot to me, when I was getting, when I was recovering. He kept a lot to himself, but once I got better and he opened up and he started talking about things, I realised that he was also struggling. Struggling in the sense that when he had to go through seeing me in intensive care, covered up with foil, with tubes coming out of my mouth and to the extent that he, you know, he thought he was going to lose me. How was he going to cope with children, mortgage, and you know obviously that must have played on his mind. And up to now he still gets recollection of what I went through and we talk about it and I always say to him that, you know, "Why don't you look at, when you do think about things like that, why don't you then look on the other side and say, well look at me now, look where I am now?" 

You know, he was worried that will my state of mind come back and you know state of mind surely must have come back now cos we're fighting sometimes [laughs]. You know, he has to deal with it in his way and he hasn't overcome it yet but he's still trying to deal with it all the time. 

He still needs time, to me, I'm very, at first I was very shocked to the extent that why should he still be dealing with the fact that, in fact, when we came home first couple of nights he would wake up in a cold sweat having had a dream about what had happened, you know to that extent. 

I've never had that so everybody's different, everybody will deal with it in their own way.

Some of those who had been patients in ICU felt that more practical and emotional support would have benefited their partners and other close family members during this time. One man noted that, although everyone asked him how he'd been coping, no one ever asked about his partner's feelings, even though his illness had been a very difficult time for her as well. Some relatives we talked to said they would have liked more information on how best to look after their loved one once they were home.

 

She would have liked to know more about how much to encourage her husband to do things when he...

View full profile
Age at interview: 68
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I just feel that it would be valuable to families if they were supported a little bit more, or encouraged a little bit more when the patient's in hospital, to know what will be required of them when they get home. You can observe some of the things that the nurses do, but you don't know everything. And it would be nice if you were told just how far you could encourage your loved one when they come home. And just really get a few professional skills or, from the nursing staff as to, if you've to apply dressings or something like that. That would be a big help. I feel that that would have been a help to me, instead of me having to ask when the district nurse said she wouldn't be coming any more. That would have been a big help to me.

Some people felt that, once they were back home, they wanted to push themselves and recover as quickly as they could but relatives worried about them and wouldn't let them do too much. Sometimes this caused tension, and some felt over-protected. Others said that their experiences during the illness were very different to those of their relatives. During and after recovery, they had re-evaluated their lives and priorities and wanted to make changes to their lives but their partners wanted life to stay the same (see 'Attitudes to life during and after recovery'). See more about the experiences of family and friends when a loved one is in intensive care.

Impact on children
People with young children wondered how much they had been affected by what they'd seen in ICU, or how much they had really understood about what was happening. One man said he didn't want his young children to see him ill in intensive care and, when he was there, his children were told a bit about his illness and carried a photograph of him so they could still feel close to him. One man said his daughter was upset when she saw his operation scar. Some parents found that their children became more 'clingy' once they were out of hospital. Others said that all their children had reacted differently.

 

Her younger son was a lot quieter than normal at school and the older one wanted to help her,...

View full profile
Age at interview: 40
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
How were the little boys? Your two sons, did they really know what was going on or...?

Yeah, they both knew. And because [my husband] was like visiting me in hospital so much and he was trying to work during the day, they were more or less living with his parents. And they were home of a weekend, but staying there. And then the oldest one, he would have a few like little tears, and I think he swung it a bit in school, "My Mum's in hospital and'" Well the whole school knew I was in hospital and how ill I was. It was like fame when I came out. And the little one, his teacher said to me, "You wouldn't know anything was wrong, he was just so sensible." She said, "He was quieter and he wasn't as smiley, but he was just really good." And he always wanted to visit me in hospital but the older one was more, "I want my Mum to come home but I want her to be back to how she was." He couldn't really deal with me being ill and he was like, but I would come up the stairs and leave the walking stick up the top of the stairs so I'd know where it was when I'd come to getting it. Well he would come upstairs and move it to like lean on the bed, so I'd go to get out of bed and fall over it. So he was always like trying to look after me, was drying my back and drying my legs when I got out the shower and stuff 'cause I couldn't really, so he was like trying to be helpful but it did upset him.

Longer-term effects on families
Most people said that their illness had affected their families in many different ways. For some the intensive care experience had led to closer bonds with certain people. Some couples said that the experience had brought them closer together, made them stronger or made them value one another more than before. Other people said they wanted life to continue as normal and that their illness hadn't changed any of their relationships. A few people said that their relatives were now more wary of any health problems, including coughs and colds, and were extra 'vigilant' when their loved ones felt unwell.

 

He and his wife grew closer after his illness and have both talked about their feelings at...

View full profile
Age at interview: 47
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Oh, we've become so much closer. We talk in a different way as well, totally different. We talk about things that really happened and what didn't happen. And I ask her whether or not, you know, I said something to her. Because in my hallucination states I was dreaming or seeing her, but I was seeing Kylie Minogue as well. So, you know, it's the whole lot is very surreal. But we're so much closer with regard to our discussions and our talks and what have you. And as you said earlier, you know, we talk about things that are on her side of it. Because it's no good saying it's all you. Because, okay, you're in a bed for fifteen days, you don't know what's going on. You've got somebody sitting there. Fortunately as I say she took some notes, because she knew I was going to ask [laughs].  

She sits there and she's got to go, phone my mum twice a day. She's got to go and phone her mum. The kids are coming home. They're only young, but all of a sudden I'm not there, they're asking questions. Because they're at that stage where, you know, if I'm not here then obviously they're asking the question. My daughter actually asked for a photograph of me and, they both had a photograph to take round to nursery with them. And silly things like that. And that brings over that side, you know. She's had to go through the same trauma but in a different format. And, you know, we talk about all the bits and bobs that went on. 

Last reviewed August 2018.

Last updated November 2012.

donate
Previous Page
Next Page