Intensive care: experiences of family & friends
Suspending normal routines: visiting ICU every day
People are admitted to an intensive care unit (ICU) because their illness or injuries may be life-threatening and they need intense support while they are being treated, constant monitoring and nursing care that cannot be performed on general wards. Patients stay in ICU for varying lengths of time, depending on the nature of the illness, and during much of this time they may be sedated or unconscious. Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and their loved ones in a matter of minutes. The everyday lives of family and close friends may come to an abrupt halt or be turned upside down as they live in the uncertainty of not knowing whether the patient will survive. The ICU, an unfamiliar, alien environment, often becomes the centre of peoples' lives as they wait desperately for any signs of change or progress.
Here men and women talk about their daily routines when their relative, partner or close friend was critically ill in intensive care. Everyone is different and experiences ranged from those who spent all day, every day, at the ICU to those who needed to balance hospital life with a sense of normality.
All day, every day, at the ICU
ICUs vary in terms of their visiting policies. In the UK many have 'open visiting', so visitors can spend as much time as they want with the patient. Some ICUs close for a couple of hours in the afternoon. Others have restricted visiting, where the ICU is closed to visitors at specific times during the day and at night. Usually, only two visitors are allowed at the bedside at any one time so that the presence of visitors doesn't get in the way of patient care.
The most important thing for relatives and close friends had been being with the patient and many had spent all day, every day, at the patient's bedside, uncertain of the outcome in the early stages.
She spent all day in intensive care and would come home briefly to spend some time with her new...
You were off work at the time?
Yes, I was on maternity leave. So I went back, he was still in hospital when I went back, but he was on the ward. So if he was still in Intensive Care I don't think, I would have had to stay off because you can't think about anything else even if you try. It's like everything just revolves around the hospital. It's like they became sort of my family rather than my family really. So that's why we still go and see them, because you sort of miss seeing them in a way. It's really strange because you're there every day. So yes, my life just revolved around the hospital and the nurses.
And who took care of everything in the house?
My mum was here all the time. So she did our, looked after [my baby].
And if I came home for dinner she was here. Because otherwise, I don't know, you just sort of, you think you're in control of everything, but I realise now that everyone was doing everything for me, even though I thought I was being independent. And I think that's the only thing, the main help for me was everybody did just sort of club together and help. Rather than I don't know if I was on my own how I would have coped.
Some people spent over ten hours a day at the hospital, returning home late at night. Others visited twice a day, staying late into the night or early hours of the morning. Most had wanted to spend as much time as they could with the patient, worried that this might be their last opportunity.
She stayed at the hospital for a week and felt that, by being there and holding her partner's...
Oh it was a bit chaotic. Because I was going, before we had the room I was going off early in the morning, well I'd get up and have a bath, breakfast, and off I would go.
You drove there did you?
I drove there. It was about fifteen miles. I drove to the hospital and I just stayed there with him, except when they were wanting to do something, the doctors were coming round, the surgeons, and wanted to do anything like bathe him and such like. And there was a waiting room and I used to go and sit there and just go outside if they were doing something, or else I would nip down to the canteen, restaurant, and have something to eat at lunch time. Sometimes I didn't go down there until the rest period, which was between three and five, because I just wanted to stay with him.
In the Intensive Care?
In the Intensive Care. Just stay as long as you could, feeling that just by holding his hand we were doing some good. And the staff there, as I say, were excellent. They would tell me what they were doing. You knew he was being monitored the whole time, so there was no...
Was there a nurse by him the whole time?
Yes. 24 hours a day. I got quite friendly with the nurses who were very good. And if they were doing anything they would explain what they were doing and why.
And what time were you driving back then at night?
Quite often late at night. It was often 10 o'clock and I'd stayed there, and eventually they gave me a pass to park for the car park because that was every two hours. Well you could put it on for four hours. But I got a pass, a parking permit and that helped. And then of course we were staying late, when he was really ill, staying in the family room.
And how long did you stay in the family room?
We had it for just over a week.
So did you take the things that you needed?
Yes I took things in a toilet bag, an overnight bag, and clean clothes for the next day. And every now and again when things were a bit quiet, that two hours, I would come home and get some things.
As well as having to deal with the shock and distress of the situation, most people also had to make practical arrangements to enable them to be at the hospital all day. Getting time off work, child-care, and care of pets and homes had all been concerns that needed to be dealt with immediately. Because the illness had often affected the whole family, many people had had to think about the care of children, grandchildren or elderly parents. The allocation of responsibilities within the family sometimes had to be changed to enable visiting. One woman, who was a pharmacist, had to organise her mother-in-law's medication because she'd forgotten it in the panic of the crisis, and lived too far away to fetch it.
Her mother looked after her two younger children which meant that she, her husband and in-laws...
Then we got back to the hospital and [my husband's] parents had stayed in a bed and breakfast the night before. They couldn't get into that hotel because we'd kept up our room and they couldn't get into hotel, so they found this bed and breakfast. But while we'd been away they had made the decision as well that they were going stay there. Although, initially, it was planned that they would come back, they felt that they couldn't leave him, once they'd got there. I think possibly my mum found it very difficult because although she was doing a very good job being the base for the other two [children]. I think she found it very hard not to be a part because he was the eldest grandson on both sides. So very, very difficult for her to keep away. But we needed her here, so it was, she was wanted in two places.
And actually having them there was fantastic because they, we took it all in turns. So during, certainly from sort of about nine in the morning until eleven at night, there was always a relative with him or in the waiting room. And I very strongly believe that that was part of his good recovery, the fact that there was constantly things familiar around him. Not only when he was out of it but as he began to recover, especially being so far away, not that he would've known many of the nurses in our local hospital. But it was very, very relevant that there was always people, voices, sounds he recognised because I think senses come back quite quickly.
Normal daily routines and tasks, both at home and work, had often become unimportant as peoples' every day lives revolved around the hospital. Everything else had fallen by the wayside - housework had often been left undone, mail left unopened and food and sleep taken as and when needed. Some people had picked up snacks or meals at the hospital. Others had hardly eaten at all, and the meals they'd had at home had been snatched quickly before returning to the hospital. Some forced themselves to do errands but many had felt unable to attend to daily chores while the patient's illness had been life-threatening. One woman said her nephews and nieces had been unable to sit their university exams because their father had been so ill at the time.
No one in the family went to work, school or university during the first week because they felt...
That week one was horrendous really, we were all there throughout the day trying to stagger the visiting. Week two, obviously people had to go back to work. My brother had to go back to work and we couldn't do anything anyway, the nurses said, 'Look, it's best that you do get back to some normality. You have got to go back to work, sitting here won't help him. We are doing everything he needs, you can't do anything.'
Some people spent all day at the bedside, leaving only when asked to by ICU nurses so the patient could be treated, turned, washed or seen by doctors. A few people who'd had very little support outside the family had had to juggle visiting with household chores and looking after pets, and sometimes had found themselves trying to do too much. One woman had taken her children with her to ICU during the school holidays. She'd also tried to continue after-school activities with them as well as working.
As well as visiting ICU she tried to keep life as normal as possible for her children and,...
And life revolved very much around what was going on in the hospital?
Did you feel that you had any support yourself?
Not really. But I don't, I didn't really feel I need support. I was so busy, I think if I hadn't have had the children it would have been a completely different story. Because I was so focused on keeping their lives normal, I still took them to their after school clubs and swimming and, as I say, did things for Halloween and that. So life was still 'normal' for them and then we just visited Nan, it was just a part of our life now, just a part of routine each evening. But if I hadn't had the children then life probably would have stopped. You would be so focused on that, whether I would have felt like going into work I don't know. I was still going into work, which took my mind off things. But I think if the children hadn't been around, it would have been a different matter. I would have been a lot more focused on being at the hospital and probably then would have thought I need support. But I just became this mad woman fuelled by some magic power to just keep rushing around and going and doing everything that was normal really for the children.
When only two visitors had been allowed by the bedside at a time, some relatives or close friends had taken turns to be with the patient, ensuring that someone had always been there in case there'd been a change in the patient's condition or, later, in case the patient had regained consciousness and didn't know anyone or where they were. Some people from large families explained that different relatives had sat at the patient's bedside at different times during the day, depending on their work and child-care commitments. One of these people said her family had kept one another informed by sending text messages about the patient's progress or updating one another in the ICU waiting (or relatives') room.
During the day he or his partner's parents were always at the bedside and, overnight, he slept on...
My daily routine was initially to be with her most of the time. I'd probably pop off for a couple of hours to give her mum and dad some time with her. Just go into the town and sit and have a drink or a sandwich. And then come back and sit with her for a bit and do sort of a bit of a rota. And then her parents would leave around 8 o'clock and I'd stay through the night. And then they'd come back around 10-10.30 in the morning.
You stayed over in the relatives' room, did you?
The Intensive Care nurses and doctors were very accommodating, let me put a chair by the side of [my partner's] bed. So I think probably of the eighteen nights, nineteen nights, whatever it was, I think probably sixteen, seventeen of those I was by her bedside. And then the rest were just sort of in the relatives' room on the sofa. And that, I mean they were very, very nice, but you know, at a certain stage I sat and thought maybe I was being a bit of an inconvenience. But I tried my hardest not to, certainly not to trouble them and ask for anything. And I didn't, I was pretty self-sufficient I think. Because they're there to look after patients, not to look after relatives.
Many people described the journey to and from ICU, and the highs and lows they'd felt depending on the patient's condition (see 'Emotional impact on relatives and friends in ICU').
His wife's time in ICU felt like a roller coaster because she kept improving and deteriorating,...
How did they [your son and daughter] react to the bad news, obviously it is a shock'?
Well one of shock and disbelief. Both of them dropped what they were doing and came over. One lives in [place name] and the other one in [place name]. My son's bank was very good with him and let him have as much time off as he needed. But seventy percent of the work was still coming at him, so he was bringing that to my house and working on that until the early hours of the morning. My daughter's husband was extremely good, how he looked after the twins and the two other children she's got, to give her carte blanche, a free rein. And so she was over every day. I mean without family it must be dreadful, to try to cope with that on your own.
For some people visiting had been quite difficult because they'd lived far from the hospital or they'd been unable to take indefinite time off work. One woman said it had taken her two hours to get to the hospital. She'd had two afternoons a week off work for two months so she could visit her sister. Another, who'd lived in London, said she'd travelled to Wales every weekend when her mother was ill and, while she was in ICU, had stayed in Wales for a month. Some people explained how immediate family members from overseas had flown to the UK to be with the ill person, fearing it might be for the last time. Two women said family members had flown from the United States. Another said her partner's daughter had taken a last minute flight from her holiday in Cuba to be with her critically ill father.
Her sister came over from the States to visit their brother but, at that time, he couldn't...
When he started to wake yeah he didn't know us at all, he didn't recognise any of us. My sister had flown over from America with her daughter, and he didn't recognise her either. That was, oh boy that was difficult. And in the early stages it's, should she have come to begin with? Do you tell them to come? No you best come now, but there's so little you can do that we said no wait until perhaps he's on the road to recovery, but of course she only came for the week and had to go back seeing him not recognise her at all so, that was pretty awful too.
Did he recognise any of his children?
No, not in Intensive Care, not at all. In Intensive Care as well it was apparent he, well we weren't sure if he could see, even the neurosurgeon said, 'We don't know whether he can see, we don't know whether he can hear'. Because he wasn't responding to us. It was apparent he had no movement at all, certainly days one to three he didn't move at all, then of course they get the physio team in, and he did start to move his left arm. The right side didn't move at all, his legs didn't move at all and it was a week afterwards we had a meeting with the neurosurgeon who told us that at this stage it was unsure of his recovery. He should have been trying to start to talk to us at this point but he wasn't. Having said that by then he'd got a tracheotomy in so he wouldn't have been able to talk anyway, but he said he should have been trying to lip something to us to respond and we weren't getting any of that either. So at that point it was, oh dear his recovery was, well it was a bit, it was the worst possible news what can I say?
During this extremely difficult time, most people had only wanted close or immediate family around them and at the ICU. It is routine for ICU staff to ask for a list of visitors so they know who is allowed to visit. Some people recalled how, 'through the grapevine,' people outside the family had heard about the patient's illness or accident and had turned up at the hospital. Others, who hadn't been aware of the visitors' list, discussed this with nurses to ensure people outside the family wouldn't be allowed to visit, at least until the patient had started improving.
Some of her son's friends turned up at the hospital and, at that time, she found this difficult.
Did they come to the hospital?
Yes immediately, I mean there was too many people really, they just couldn't believe it. And although it was lovely and supportive, it actually got too much. And I really thoroughly recommend that you just don't have too many people like that really round you. I don't know, some people act in a different way. So many of our son's friends, and a girlfriend that we didn't know too much about, arrived and it, although it was nice, it was a bit heart-' it was a little bit upsetting just seeing these young people round us when our son was fighting for his life.
I got mixed emotions really. I got cross that, here they were, you know, and asking a million questions yes to be helpful, but I felt like screaming at some times, you know, 'Go away, leave us alone, you're alive and our son is dying.' But you look back and now, as the months go on, you take a different look at it and you think they're so caring and they didn't, you know, they're young and they want to ask questions. But at the time you think, 'oh just leave me alone.'
Some of the people we spoke with had been the partners or close friends of the critically ill person rather than immediate family. One woman, whose best friend's father lived far from the hospital and was too elderly and weak to travel, had become her next-of-kin and had spent every day with her at the ICU. One man, whose partner's mother had become critically ill, had wanted to support his partner during this time but had been wary of being in the way because he wasn't immediate family.
The journey to the hospital was difficult because they didn't know how his partner's mother would...
So during that time that [your partner's mother] was in hospital, you were going every day?
Were you working as well or'?
My hours were pretty flexi. I work as a doorman. I mainly just worked on the weekends. As I say, my main concern was making sure [my partner] got there each day, especially when it was in [place name], which is quite a distance. Not so bad in [place name], it's five minutes from here. But in [place name] my main concern was just going with her. I think all the time [my partner's mother] was in hospital there was one day that we didn't go.
And you were living here?
I was, yes.
How long had you known [your partner's mother]?
Quite a while. I don't know, it must have been going on a year. It's like a family that I've never had in a sense, you know. So I felt quite close, very close to them. But as I say I did feel like an outsider at times. But still close enough for it to affect me.
This woman said she and her husband had never been close to his sister but, when she was admitted to ICU, she became her next-of-kin because her husband had been overseas.
Although she and her sister-in-law had never been close she visited her for a short time every...
I mean I made this trek up to the hospital once or twice every day. And it was quite easy. I could go, although it was rather expensive parking up there, I could park up there or I could even take the bus. So that it was something I did. And two of my children were at work and so, and I could only expect them to come with me when they weren't. And the other one, who wasn't, did come with me on several occasions.
So during that time you were going into the hospital in the mornings, were you or'?
Not particularly just in the morning, but I sometimes went twice a day I think.
And what was your routine like during that time, in those three weeks?
I think I was, it was almost everything I did I stopped. I usually go to music about three times a week and I really gave up on that. And so that it was almost everything I did was to do with that.
Once the patient had started improving, relatives and close friends had felt more able to go home during the day and, gradually, resume some of their normal activities.
Some sense of balance
Everyone experiences and deals with stress and trauma in different ways (see 'Emotional impact on relatives and friends in ICU'). Some people said they'd needed a sense of balance amid the emotional turmoil of visiting ICU.
She wanted some sort of normality during this difficult time, which had made her realise how...
We were very lucky there that everything, we were out on top of the high street, so it very, very easy to get food. There's a Marks and Spencer, you could go and get food and drink because in the hospital, times when you wanted to eat, they weren't always open. And I know the nurses find that terribly difficult. And at times you had to remember and go and get a roll when they were open and put it one side. There was a little fridge in the room and you had to remember to go and get it otherwise you didn't eat. And you'd sometimes want a hot drink and again if there hadn't been that little room there, and very often the restaurant wasn't open and the food wasn't always that brilliant either. So being on top of the high street was a definite advantage and we didn't have to worry about parking then.
A few people who were spending every day in ICU became very exhausted and nurses had suggested they go back to work part-time to regain balance and focus. This woman, who'd spent a lot of time at her husband's bedside, had felt slightly stronger having spent a few hours each day away from ICU.
She felt emotionally exhausted and work helped take her mind off her husband's illness for a few...
That is the only thing while I was going to the hospital all day, every day, I found it very, very tiring. I would come home in the evening and just have something to eat and then go to bed because I was so tired. Though I think the tiredness was from emotional exhaustion really rather than doing anything. But I did go to work in the morning and then I went back into the hospital in the afternoon until the evening, and I was a lot better then because I felt stronger and more able to help or do whatever was necessary if the situation changed.
Up until the time that I returned to work, I really was, numb I think is the best way that I can describe it. I used to come home from the hospital and then my sisters, and my brother and my sons would phone. I would have something to eat, although I didn't feel like eating. I never wanted to eat, but the nurses at the hospital, they used to say to me, 'Make sure you eat something. I shall want to know what you had in the morning'. And sometimes I would come home and just have a jacket potato with something and that was enough. And then I would go to bed and then I would be up early in the morning about half past six. I didn't sleep very much and it was very good because I could phone intensive care at any time of the day or night.
They said if I can't sleep and wake up in the early hours, phone by all means, but I used to phone about half past six, seven o'clock and they used to say, 'He has had a comfortable night.'
And I used to go down in the morning before I went to work for a few hours and leave about half past twelve. And because they like them to rest between a certain time and I then would go back at 3 o'clock until 8 o'clock at night, purely on the advice of the staff, because they said, otherwise I would be drained for when he did come out of it and when I needed to be strong.
She felt helpless sitting by the bedside so went back to work part-time when her husband started...
One of the most harrowing things I think for the family was having to go out of the room whenever he had to have an unpleasant procedure done. We would go into the relatives' room, and because the staff were so busy with the patient's needs you tended to get forgotten a bit. So you could be waiting there sometimes much longer than you needed to be. It was that waiting around for hours on end that made you feel pretty helpless. There wasn't much that you could do. So I took the decision to go back to work, although they weren't expecting me back quite that soon. I used it as my way of coping with the situation. His parents were there all the time and helping as well. I made a routine of going to see him first thing in the morning to get an update. And when the doctors had been round I'd go back at lunchtime to see him. My company were very good at giving me plenty of time off. After work in the evening I'd pop in after having had dinner. We all helped each other out, [my husband's] family and myself.
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 an operation. Elective surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, everyone's experience is unique and how long they spend in hospital varies. One woman, whose husband went to ICU after a kidney transplant operation, said she visited him every day, either alone or with her daughters (see 'Planned admissions').
After visiting ICU
After spending all day at the hospital, many people had to make or answer phone calls to update other relatives or friends. Many had felt on edge or uneasy, wondering whether they would receive a phone call from the hospital asking them to return to ICU. As a result, some people were unable to get a decent sleep. One woman said she and her husband had been wary of having a drink to relax in case they were called back to the hospital during the night and had to drive.
Some ICUs have limited provision for the overnight stay of relatives. Some people, who'd lived a long distance from the hospital, had been offered a bed in hospital accommodation for relatives. Some had used this facility. Others stayed in nearby hotels or bed and breakfasts (see 'The relatives' room' and 'Overnight accommodation'). This woman, who lived some distance from the hospital, had stayed at her daughter and son-in-law's house while they were in hospital and had found this extremely stressful.
Her daughter's and son-in-law's house was exactly as they'd left it the day they had a car...
And during those first few days and you staying at their house, what was your day-to-day routine during that time?
It was a strange existence. My husband came home, so I was on my own. Visiting started at 11 o'clock in the morning and I was there soon after that, 11, half past 11. And stayed until sort of early evening.
In the ward?
Yes, yeah. I stayed with my daughter on the ward, except that I did visit my son-in-law in Intensive Care and brought a report back to her. And when she improved and was more mobile I actually took her down.
Was she able to walk or did she have a wheelchair?
No, wheelchair. Yes. I was almost living at the hospital. I ate at the hospital and then when I got back to their house I spent a lot of time on the telephone, informing people, giving progress reports about the two of them. Yeah
To family mainly or?
Family, mainly family. I spoke to my husband and other family members, yes.
Did you find it quite tiring being at the hospital all day and then coming back to make these phone calls or did you find it, you needed to talk to other people by that stage? How did you find that?
It was tiring. Yes, even though I wasn't doing a lot but just the emotion. It was emotionally draining. I made sure I got some fresh air and exercise. I actually walked to the hospital and back.
And how long was that?
It was half an hour walk each way. Yeah. And then, but then yes I was always very tired in the evening and didn't sleep very well because of all the concerns, worries.
Parking at the hospital and entering ICU
Some people talked about parking at hospitals. Some, who'd had reduced parking or parking permits because they would be visiting ICU regularly, were glad they'd been told about these by ICU nurses. Others, who'd struggled to find parking spaces, said that parking had been an added concern at a time they'd already had too much to deal with.
He felt visitors shouldn't have to worry about parking when they have a relative in intensive care.
That is a good point. That is actually something that myself and my sister talked about. If there are family members of people that are in Intensive Care on life support, there should be somewhere for them to be able to park and not have to worry about, 'I'll have to go out to put some more money in the meter' sort of thing. The hospital where we are, in our locality, is a nightmare for parking. I don't know how they get round that. They have tried to extend it but I found that it was easier for us, it was easier in the evening to find somewhere to park. But what I used to do, I used to drop off all the family members that I was taking at the main entrance. I would then go to park at the bottom of the hill and I would walk back. And on leaving I'd do the reverse and go and get the car, unless it was nice and then we'd walk as a family. But mostly certainly you have got, it's one of the things you shouldn't have to worry about, where to park, you know.
To be allowed into intensive care, visitors must press a buzzer and the door is opened by an ICU nurse. While patients are being treated, turned, washed or seen by a doctor, visitors are asked to wait in the ICU waiting (or relatives') room so that the privacy and dignity of the patient can be maintained. Although relatives and close friends had appreciated this, some had felt 'forgotten' while they'd waited for what felt like hours for a nurse to let them back in again.
She found waiting to be let into ICU stressful, especially when her partner was first admitted,...
As soon as you get in it's fine but it's just the getting in.
And did you have to wait for a while?
Yes. And then you have to wait because I got there at change of shift. And, you know, you're beside yourself at that point, because you don't know what's happened. You don't know if they're dead or alive. When they do come and see you, they take you into a side room and they explain everything really clearly, with a nurse and a doctor and that's amazing as well. And then they explain to you that you're going to get a shock when you see them. You know that they're going to say that but you still get a shock. And then you don't know what to do because you haven't got used to it. And you don't know the routine and you're worried that you're going to upset the nurses and the doctors. Strangely that's how you feel, that you might be in the way or you might tread on a pipe or something.
And then when you come back in again, sometimes some of the nurses forget you. So you ring the doorbell again, back to this access thing. I wasn't because I would walk in after a while and I'd think, 'Well I'm just going to walk in and ask somebody.' But I know my partner's parents who aren't quite so forward were sometimes sitting in that little waiting room for about two hours because people had forgotten they were there and they didn't want to bother anybody. And of course they think something's wrong.
Last reviewed August 2018.