Intensive care: Experiences of family & friends
Emotional impact on relatives & friends in ICU
Having a relative, partner or close friend critically ill in ICU is a crisis situation that everyone deals with differently. Here people talk about the emotional effects when someone they were related to or close to was ill in intensive care.
People experienced many different, powerful emotions at different stages of the patient's illness such as when they'd found out the illness or injury was life threatening, when they'd lived in the uncertainty of not knowing whether the patient would survive, when the patient continually improved and deteriorated, when the patient showed signs of progress, and if they'd had to deal with death and bereavement. Shock, sadness, hope, relief, acceptance and joy were common emotions, depending on the patient's condition and what they'd known about it, at the time.
When the patient was admitted to ICU
Most people had been extremely shocked when they'd been told that the patient's illness had been life-threatening, particularly when the symptoms which preceded it had appeared quite trivial. For those whose relative or close friend had an accident, being told about it had been particularly shocking because the news had come completely out of the blue. There'd been no build up and no time to prepare mentally, emotionally or practically (see 'Emergency admissions').
She was shocked when she found out the cold her sister had was life threatening and had...
Who phoned you?
My mother phoned me. And then I, you know, basically just arranged to sort of have a couple of days off work so I could go down and see her.
It must have been quite a shock to hear -
Because if you'd seen her a few weeks earlier, had she just had symptoms of a cold?
Well, I'd just, the last thing I'd heard from her was, I'd had an email just saying that she'd had this awful flu but she was better. And that was the last thing I'd heard. And then, you know, next thing I know she was sort of in hospital with this thing that we didn't know what it was.
She'd had sort of pins and needles in her fingers and her toes. And she'd been away for the weekend and she'd had this all weekend and felt a bit strange. And then when she got back, she started to lose the use of her legs and her hands and arms and couldn't pick things up. So her friend took her to the hospital.
With no warning whatsoever, peoples' lives were thrown into chaos. Not knowing whether the ill person would survive or whether they'd be permanently disabled, brain damaged or paralysed had been traumatic. At this time, most peoples' lives had revolved around the ICU, sitting at the patient's bedside, waiting for news. Many people needed to make practical arrangements to enable them to visit ICU every day, including arranging child-care, care of elderly parents, pets and home. Family roles and responsibilities often had to be changed, and normal daily chores and routines had fallen by the wayside as their whole existence focussed completely on the patient's survival. One woman said that, as well as dealing with the intensive care situation, her mother also had to care for her father, who was too ill to be left on his own. Most people only wanted to be with immediate family or very close friends at this difficult time.
The early stages - a roller coaster of anxiety and relief
In the early stages of the patient's illness, people waited desperately for any information from doctors or signs of change in the patient. Often, doctors hadn't known the outcome, so relatives and close friends had no choice but to live day-to-day, focussing only on the moment in hand.
She focussed only on her husband's survival and asked other relatives to focus their prayers and...
And to be totally honest you don't actually think of that. I know our brother-in-law was there, and he said, 'How do you feel?' And I said, 'Well that is just something I will cope with when we get to that stage.' You live very much for the moment, not what is going to happen in six months time. You know it was just a question of pulling him out of this.
I know I got used to it the first night, I had got used to him fitting, but then his brother just sort of started crying, so he couldn't cope when he started to go, whereas I was okay. And I went, 'It is okay they will just do this, it is all right, don't worry,' and you do pick up on that and it does. The one thing I will say though that is strange and it is not being a martyr or anything like that, is people were very concerned for me and I didn't want them to be. I kept saying, 'No all energy, all that, everything has to go, pray to whichever God you believe in, the sun, the moon, anything, but all your energy has to go on getting him out of it. I am okay.' And of course they are saying, 'We can't do anything for him, so we can help you'. And I was saying 'I know but I don't want you to think about me.' That is not being a martyr or anything. That is just something that at the time I felt very strongly about. They had to be there for him. Not for me. I understand now their point of view but at the time it was very much - 'No, please concentrate on my husband, don't concentrate on me. I will cope. If I crack at some point, I crack, and then you can help me but while I am coping ''
When the patient continually improved and deteriorated people had no idea what the future held. The constant highs and lows felt like 'a roller coaster' of emotions - relief and hope when the patient showed signs of improvement or even stability, but fear, sadness and anxiety when they'd gone back to a near-death crisis (see 'Uncertainty'). Those who thought about the future worried about living without someone they loved or coping with someone who'd been left disabled, brain damaged or paralysed.
She had a phone call in the middle of the night saying her husband's condition was deteriorating...
Did you drive?
Yes. I drove myself that time. I think if anything had got in my way, there would have been a' I don't quite know quite what would have happened. But I shot down there. Luckily it is a very quick, simple route from here. So that wasn't bad. And I went in and I went down to see [my husband] and see him and say hello and things. You could see obviously things were very busy around him, and lots of things were going on, doctors in attendance, nurses.
They took me back to the office after a few minutes and explained that they were doing absolutely everything that they could and if he deteriorated any further, would I want them to try and revive him? To which funnily enough it is the sort of conversation we have had over the years, you know, if I get seriously ill this is what to do. So actually I could answer that quite openly, 'Yes, of course I do in the first instance, but I do know that if there is a risk of oxygen starvation to his brain and there is risk of brain damage, he will not want to be revived.' So I explained that. And I also said, 'If he doesn't make it, then if there are any organs or anything that are usable, then we would want them to do that.' And I said I understood that he was very septic, and the likelihood of that actually anything being that was usable was very slim. But they were doing everything they could, he was having heart drugs etc. and he had been stabilised a little bit. In the meantime I had to get hold of his Mum and his brother and get them to the hospital.
Sometimes she worried how she'd cope if her son was left disabled because she would be his main...
Many people explained that, because the illness or accident happened so quickly and so unexpectedly, it felt unreal or surreal at the time and sometimes even for months afterwards.
She tried not to think about what might happen in the future though, when it all became too much,...
And they explain to you that you have to do it' well I decided you have to do it day by day. You can't ever ask what the future might be because you can't cope with it. And I think if you can grab that and they do try to explain it to you. And they're quite pessimistic which' because I think they think people otherwise just ignore it and they don't get it. But if you can stop thinking right well this is a' you know, it's fine you can do it. It's just your new way of life and that's how it has to be. It's the only way you can get through it.
You think that you're on your own, you know, you're wandering around phoning everybody for the first time. You think, 'I am completely on my own.' And then people start to arrive and it's not so bad. I had other difficult circumstances to deal with which other people wouldn't have. So there are all sorts of extra stress going on. But I didn't think beyond the day. And the days that I did, I did have a couple of times when I was upset when I was in the ward, with him, then I would leave in case he could hear. And one night, the nurses I think probably spent longer with me than they did with him. And they were fantastic. And you stop feeling embarrassed about looking awful and crying in public really [laughs]. It just isn't an issue. You're frightened. You're absolutely terrified that they're not going to live, that's really your thought, you know, if you let yourself think it.
Some said they'd felt extremely tearful in this early stage, others almost switched off from their feelings altogether or how they'd gone 'into autopilot' and just focussed on whatever had to be done to cope at the time.
At the hospital she focussed on her brother's illness and on supporting his children. But, at...
Many people felt helpless sitting at the patient's bedside, waiting for information. Some felt they'd been 'in limbo' or 'in a twilight zone', living a changed everyday life that had focussed solely on the patient's survival while life around them continued as normal.
Other people's everyday concerns felt minor and trivial compared to her own anxieties about her...
Some people explained that, somehow, they'd had a surge of adrenalin and managed to do everything that came their way, including spending endless hours at the hospital and coping with the overwhelming crisis. Some had spent all day at the hospital, looked after children, pets, home, and had managed the shopping. Others explained that they'd felt numb, and some said they hadn't wanted to talk to anyone, including family. One man said he'd hidden his emotions, as he'd always done, and focussed instead on supporting his mother and sister.
Although he supported everyone else and didn't show his feelings, he also had sleepless nights...
One man said that, when a close friend's mother had been critically ill, his friend was unable to talk about her illness or see her in such a vulnerable state. He hardly visited ICU until he heard she'd started improving. A few people felt that men and women dealt with the situation differently, and that women had shown more emotions and found it easier to accept what was happening.
She felt that the men in her family found it harder to see her husband so ill, maybe because he...
And you had your family around you. Did you feel that there was a lot of support from them? Or often you were supporting them?
Both. Both. My family live up in [place name]. They did come down to see him and to see me and they were here for about an hour. They came down on the train and then went all the way back on the train and it is a lot. But it goes back to - the females, family or friends, coped a lot better than the males did. I think it was, maybe because my husband is a man and it could be happening to them or what, or it is just my husband is very life and soul and very outgoing and all of a sudden to see him laying there, wired up on drips and they really couldn't cope.
When the ill person was in ICU because of an accident, relatives and close friends tried to make sense of how and why it had happened. One man described how he and his partner's family had gone over her mother's accident again and again, trying to work out exactly how she'd fallen through the bedroom floor. One woman said she'd tried to make sense of her brother's motorbike accident time and again but had to accept it'd just been 'a freak accident you can't guard against.'
They kept trying to work out how his partner's mother could have fallen through the ceiling but...
I mean how she fell through the ceiling... how she actually fell through the ceiling. She had to put both feet on the plasterboard, which is near on impossible. She should have walked through the door, stepped through, one foot should have gone through and she would have probably fallen forward and banged her head. But she managed to put both feet, she fell through. There was all nails sticking out. No cuts. Absolutely amazing. The funny thing was she managed to put her cup down, she had a cup of tea in her hand, and that was in between the rafters somewhere. And then how she missed the stairs and everything. So to me in a sense, it was a total miracle that she lived.
Some people said that they'd felt emotionally exhausted at the time but they'd still been unable to sleep after getting back from hospital. Sometimes they were too afraid to sleep in case they needed to go back to ICU. One man was so exhausted after visiting ICU that he'd slept well but had hardly eaten and lost lots of weight. Others, too, found they'd lost weight because they'd skipped meals or only eaten snacks. Many hadn't felt hungry or been able to focus on themselves. Eating patterns, sleeping patterns, how they'd looked or felt had become unimportant as they'd focussed only on the patient. One person, whose partner's mother was in ICU over Christmas, was surprised to realise how difficult it had been to be interested in an event that would normally have been so important.
Her life was so focussed on the hospital she hardly slept, worried every time the phone rang, and...
Did you get much sleep in that five and a half weeks?
Oh God no. I'd sort of sleep for maybe three hours and wake up and then maybe be awake for an hour or so. You know you think about the day and then you'd nod back off again and then, like I say, I used to be on the beach every morning at six with my dog.
To be honest with you I wasn't very patient with people because I used to think they'd come out with stupid things and stupid statements and ask so many stupid questions when it was as plain as the nose on your face that the man was really sick. You only had to go there. They shouldn't, I don't know I felt like I was being mithered but my family know me so well that they didn't mither me because they know that I would probably bite a chunk out of them [laughs]. I've got a lot of patience with children and that and animals and everything normally. Not with grown-ups. I'm not very patient with grown-ups [laughs].
During this traumatic time, some people also had to deal with other stressful situations. One family had been in the middle of moving home when the critical illness happened. Another had to deal with other illness in the family.
One woman, whose sister-in-law had a car accident, said she'd never been close to her but became her next-of-kin because her husband was away. She'd had to visit her sister-in-law's home, tell her friends and family as well as sort out many practical matters.
She'd never been to her sister-in-law's home before but had to go there, find telephone numbers...
I started to think, I'd already told my husband but he was in America. And I can't quite remember who, at that point, I talked to. But I certainly took the telephone numbers of the people who were on her answering machine. And I picked up from her house, I actually found she'd got masses of files, she'd got filing cabinets and other filing cabinets and things in drawers and things on her computer, and I managed to take away a list of email addresses and also a folder that had everything about her insurance and also stuff about her will I think I found. And I took all of these home and started making contact. And fortunately there was an email that I'd had from a relative that had been I think something that she had sent to several people including this relative and some other people, and I gradually began to build up a network of people who she knew. And this was a very amazing experience.
Wanting a sense of balance
During the early stages of the patient's illness, some people had needed to maintain a sense of balance between hospital visiting and normality. One woman, who had two young daughters, said she'd tried to keep life outside the hospital as normal as possible for them (see 'Impact on children'). Another said her son's accident had made her realise just how precious every day was and she'd felt it important to continue with aspects of normal life.
When her son was in ICU, she felt she became very strong, practical and positive.
Some people introduced a sense of balance into their lives once the patient showed signs of improvement. A few said they'd returned to work part-time, often on the advice of ICU nurses, and it had helped put their mind on other things for a few hours. Several stressed the importance of taking breaks during the day and found that having to come home, feed pets or take dogs for a walk helped them get fresh air and respite.
She needed some balance between hospital life and normal life, and made an effort to spend time...
Daughter' Watching films. We watched an awful of DVDs didn't we?
Once you got back home?
Daughter' Yes. We had quite a nice time. Like in some ways it wasn't all really negative. We had fun didn't we? We used to go shopping a lot. We spent a lot of time in Sainsburys buying nice wine.
Husband' Yes, Sainsburys was our' because we haven't got a Sainsburys here you see. Whereas near the hospital there is a Sainsburys so we spent a lot of time there.
Daughter' Buying Gourmet food.
Husband' We spent a lot of time there.
Daughter' We bought all this food and wine and came home and made lovely dinners.
Husband' And the very nice Indian restaurant.
Daughter' Oh yes. We used to eat out a lot. We did watch a lot of films didn't we?
Did you talk much about what was going on or was it just - you were just too involved in the visiting really to step back from it all?
Daughter' I don't know, I suppose we did. I don't know, it was hard at the time because you talk about it always, it is not, I think we talked about it when we first thought about it. Or something. We didn't make any'
Husband' No. I mean we had'
Daughter' Chats about it.
Husband' And we had sort of low moments and high moments and supported each other. But I mean we didn't over talk about it I don't think. But then we didn't ignore it either.
Daughter' We were quite philosophical. And also, no, actually, I mean we, like we chatted about what you would do if she died quite a lot.
Daughter' I think the most important thing is like even, through the whole situation, like that guy said on, whenever it was, the Santa pixie [consultant] turned up, I think that was the best piece of advice, it is balance and it has always been balance the whole way through, in everything, even now. Balance it is just crucial, to try and get a good home / hospital life balance even. If you are visiting someone every day, it is important that you make time at least once a day to do something that is nice that is just for you, because you need that. You can't, I don't think you can function at that level of emotional intensity without re-charging yourself slightly. I think that is really crucial. And I think for anyone going through this sort of situation that that is the trick, you have got to try and stay balanced.
Most people never gave up hoping the ill person would recover. Many had confidence in the staff, support from family and friends and prayed for the ill person's recovery. Despite the chaos they'd been thrown into, some felt the atmosphere in ICU was calming and respectful.
Throughout her husband's illness, she always believed he'd survive, even when he'd improved and...
Some said they'd tried to be as positive as possible throughout the person's illness, including during their ICU stay. One person said he'd sat by his partner's bedside, day after day, hoping his positive thoughts and energy would help her improve. Another said she'd remained as positive as she could by reminding herself and others how determined the ill person had always been, never giving up on anything.
Although she was very positive throughout her partner's four month stay in ICU, she didn't know...
Everybody asks you, 'Oh, how did you deal with this?' and, 'How do you...?' I don't know how. Something just happens to you, that you keep control or you make that decision. And I know the nurses used to say, asked me to speak to other relatives that were there, sort of because I was so positive. But like I said to them, 'I can't tell them what I'm doing, because I don't know how I'm doing it. I just am.' But I don't know, it's just always just do what you feel. I think that was the main thing. Because I could have been like everybody else. And, I don't know, something just happened to me and I just felt that I had to do that. But you just, everybody thinks they'd understand but you, everyone just deals with it differently. There's nothing right or wrong to do. I don't think you can tell people.
Accepting what had happened
One man, who'd come from a large family, explained how they'd all supported one other when his elderly father was critically ill. He'd found it easier to cope and accept his father's illness when he saw other ICU patients much worse than his father and much younger. Another man, an ICU consultant, said that being familiar with the intensive care environment and treatments helped him accept and deal with his father's illness, and focus on making sure that everything that could have been done for him was being done.
Because he knew what to expect, his main focus was making sure his father was receiving all the...
I think frustration. It was partly because I knew what was going on. He kept developing these complications, which to be fair, were mainly out of the blue problems that were very unusual. Knowing what was going on helped. My mother always teases me of being heartless. She knows I am compassionate but, at the same time, because I do this job day in, day out, I have to develop a certain degree of thick skinned-ness, purely to be able to cope. If you got emotionally over-involved and break up over every patient who doesn't do well, then you would be a psychological mess. You have to develop a certain degree of resilience to cope with the job. And so because I knew what was going on I had that resilience. I remember a few times shedding a few tears privately on a few occasions but it was more out of frustration for my father. He wanted to get better and every time he was almost there, almost getting to a ward, then some new problem would set him back. My priority I suppose was to make sure that nothing that should have been done wasn't done. So, in other words I suppose I didn't want guilt on my mind that something went wrong that could have been avoided had I not picked it up or not said something. I think that was probably one of my main foci.
Signs of improvement
It was a huge relief when the patient started to show signs of improvement and when, little by little, they'd needed less support and equipment. Patients remain in intensive care for varying lengths of time, depending on the nature of the illness. Some need surgery, others are treated only with drugs. If the event that takes them into ICU is unexpected, they may not be aware of their condition until late into their stay. Some may recall pain, others don't, but it is common for patients not to remember what happened - when they regain consciousness (come round) in ICU they may not know where they are or how ill they've been. This is due to the illness as well as medications [see Intensive care: Patients' experiences].
Relatives and close friends were overjoyed when the patient survived and regained consciousness. Some had been worried at first because the patient had been hallucinating and they'd been concerned about their mental health. Intensive care patients receive many medicines and some of these can cause nightmares and auditory or visual hallucinations (see 'At the bedside: signs of improvement and progress').
Doctors gave her husband a brain scan and reassured her that, though he was hallucinating, there...
And eventually he was released from ITU and was taken to the Cardiac Care Unit again and he was there for about a week I think it was. And because he was in Intensive Care for five weeks, that is a long time, he went to Cardiac Care and there I mean obviously they were looking after him because of the heart and that stabilised and they were happy with that. And then he was sent to a different ward after that, where the other amputees were, and he didn't really know much about it because he was still very, very muddled. And I was extremely worried because I thought he had lost his mind, and the doctors kept saying that he should come out of it, but because I was worried about it, they decided to do a scan and they did a scan and they said there was nothing wrong with his brain. It was just the tablets and the aftermath of the anaesthetic and it would all clear.
Different feelings at different stages
Most people stressed that their thoughts and feelings had changed at different stages of the patient's illness and how they'd experienced many intense emotions all within a relatively short time span.
From the time her husband was admitted to ICU to the time he came back home, she'd run the whole...
But generally my feelings were a whole gamut of emotions. You know, fear, joy, trepidation, anxiety and pleased that something had happened or a bit worried and all different things. But gradually it went from being really fearful and upset, and as each day went on, and we got into another new day, each day it was gradual progress and sort of spirits lifted and he came home. And although I had had the cat put to sleep that morning, after [my husband] had come home, I walked to the little local shop to get some bread for bread and jam and found myself smiling to myself as I walking back because I had got him home. That was all good.
Some people said they'd coped while the person had been critically ill but the real impact of what they'd been through only hit them after the patient had come back home (see 'Supporting and caring for the ill person at home'). Some said they were hardly aware of the intensity of their emotions at the time because they were too bound up in the pressures of keeping going - spending many hours a day at the bedside, keeping in touch with other concerned friends and relations, supporting other family members and, in some cases, continuing to work. The full emotional impact of the crisis didn't always become apparent until after it began to resolve.
Although most people admitted to ICU have an unexpected life-threatening condition, some are admitted after planned (or elective) surgery because they need special support and care after a major operation. Planned surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, every patient's experience is unique and it is normal for relatives and close friends to worry about them having major surgery.
At each stage of her husband's time in hospital she found herself fearful of the risks associated...
Well at first I wanted him to live through the anaesthetic. Once he had lived through the anaesthetic I wanted the pain initially to be controlled and wanted him to feel comfortable. He did have four subsequent operations and after each and every operation I feared that, 'Was the pancreas going to be removed, would the pancreatitis get worse?' He did spike some infections and the first one he got when he had a blood transfusion. So I got paranoid about blood transfusions. And asked if they, does he really need a blood transfusion. And then I became more concerned with actually who did the treatment, because if I watched some people do it and I became concerned with exactly how they did it. I just reacted to everything as it happened. And I became paranoid myself, you know, like about blood transfusions, about cleanliness and about - not that I had any need to. I had no need to. It was just my fear then that the blood that was meant to be making him better was actually giving him an infection and just reacted to everything as it happened.
Dealing with death and bereavement
Sadly, not every patient survives critical illness. For those whose relatives or close friends die in intensive care, it's a traumatic experience which everyone deals with in different ways (see 'When someone dies' and 'Coping with bereavement')
Last reviewed August 2018.