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Intensive care: Experiences of family & friends

Waiting for news

Waiting anxiously for news of a patient's condition is a common experience for friends and relatives in intensive care. Here relatives, partners and close friends talk about waiting at the patient's bedside for news. Most ICU patients are unconscious or sedated in the early stages of critical illness. 

For most people being with the patient in ICU had been all that mattered, even if it had been difficult to see, touch or talk to the patient and even though there'd been little they could have done to help. Many recalled how they'd spent much or all of their day and sometimes night at the patient's bedside, watching monitors, waiting, hoping or praying for their survival. During this traumatic, uncertain time, normal daily activities had usually fallen by the wayside, and relatives and close friends had lived from one day to the next, not knowing what might happen or what the future held.

 

They watched the monitors and treatments being given to their son in the hope they'd gain some...

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Age at interview: 51
Sex: Male
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Mother' He was in a side room, because obviously once they concluded it was a bacterial infection then they went into barrier nursing, and we had to tog up in aprons and masks and gloves. And that was very frustrating because I couldn't touch him. 

Father' The nurses especially were very communicative about the procedures that they were carrying out. In Intensive Care there's a tendency to watch the numbers on the monitor. And every time anything changes you think, 'Oh, it's changed.' And they set the alarms, so that they go off. And so there's this tendency to sort of think, 'Oh, the number's changed. Something should happen.' But they're much cleverer than that. They understand that you need to give a time for things to settle down. 

Mother' Yes, but we spent days watching the numbers, absolutely panicking if his temperature went up or his pulse went up. 

Father' The situation was that, it's very difficult now to remember exactly what happened on what day. The day after he was admitted they tried bringing him round from the anaesthetic, well, morphine predominantly. And as he started to come out of that sort of haze that one has, he was very agitated and becoming more and more agitated. And obviously that was quite a low point too, because you sort of kind of felt that maybe he'd be a bit better. Because of the nature of the agitation they decided to do a further CT scan. Which showed extensive swelling. And the conclusion at that point was to re-sedate him and to leave it a bit longer and see how things would go. I can at this stage still be quite confused about what happened exactly when during this process. 

Mother' Yes, absolutely. It runs together into one great big nightmare. 

Many described how they watched monitors hour after hour, almost obsessively, willing a change in the readings. Some felt they'd gained a good knowledge of the monitors and what they'd shown. Others explained how, on the advice of staff, they'd stopped staring at the screens because a change in readings often meant many different things. A few described how monitor readings had sometimes changed when close family were present. Many explained how they'd waited desperately for any sign of improvement - a change in the monitor readings, a twitch on the patient's face, a squeeze of the hand - anything to give them hope. They also described how the patient's condition had improved and then deteriorated again, often more than once, and how it'd felt being forced to live in this uncertainty (see 'Uncertainty'). 

 

He waited at his wife's bedside until the early hours of the morning but no one at that time...

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Age at interview: 83
Sex: Male
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So she was taken into intensive care?

Yes. 

And were the doctors able to tell you what was wrong at the time or didn't they know? 

No. They didn't make any comment. 

And where did you wait? Did you wait outside the intensive care unit or in a waiting room? 

I was in there with her. 

By the bed? 

By the bed yes. Yes. 

And had you been in an Intensive Care Unit before? 

No. Never. 

It was the first time. And did you know anything about the equipment that they used or did they explain? 

No. Nothing at all. 

So you sat by the bed? 

Yes. 

And how long did you stay there for? 

I was there until quarter to three in the morning. 

Oh then you drove back? 

And then they said, you know, 'You may as well go home.' And she was obviously breathing all right with the machine doing the job. And I went home and got some sleep and I was back again in the morning, about half past ten I suppose. When I went back. 

And did you see the doctor then or was it a nurse? 

The nurse at that time yes. I saw the doctor later on. Obviously they put the thing through the mouth then, but then on the Friday morning about 12 o'clock the nurse said, 'Can you leave us for a while. We are going to do a tracheotomy.' And go through that, so they did, and then I saw the doctor again.

And what did the doctor say to you? 

Well he says, 'We've got to hope for the best.' 

Most people recalled how they'd been encouraged by nurses to talk to the critically ill person because there was a possibility that they'd been able to hear. Some had spent hours by the bedside talking to the patient, even if at first it had felt strange or they hadn't known what to say. Many had just wanted to help in whatever way they could and would have tried anything to have made a difference. One woman said she'd talked to her sedated husband about the news, sports and crosswords in her paper. Others had talked to their ill relative about their children, grandchildren and pets, most saying they'd talked about anything and everything in the hope it would help the patient's recovery. 

 

When she talked to her husband about their grandchildren, she noticed tears rolling down his cheeks.

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Age at interview: 63
Sex: Female
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I used to sit for hours talking to him. And then eventually, one day, tears rolled down his face. I was talking about our grandchildren, so I thought perhaps he can hear what I am saying. And then another day he squeezed my hand, so you know gradually he began to come out of it. And then while he was in Intensive Care he had physiotherapy because of the collapsed lung. You know they had to try and clear it and everything and they inflated his lungs and other things that they do. And I mean, they were very good. I can only speak as I find. But everybody was extremely helpful to me and comforting, I have to say. 

Some had sung to the patient, others had played music or taken in recorded messages of support and well wishing. Several said they'd believed talking to the patient, singing or reading to them had helped and that those patients' who'd had no such support had often taken longer to improve.

 

His grandchildren recorded messages for their grandmother and, when she heard them, the monitor...

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Age at interview: 66
Sex: Male
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The other thing that actually hit the subconscious more than we realised was, at that point we had got four grandchildren, a grandson and granddaughter and a pair of twins. And the grandson and granddaughter were able to talk quite clearly by that time. And so they made a recorded message for their grandmother which we took in and played it to her when she was unconscious. But if you watched the monitor while it was played, deep down she recognised the voices somewhere because the monitor altered, as the nurses had said 'it alters when you come in'. She could sense that I was there. It didn't alter, depressingly, when my son and daughter were there, that doesn't say much [laughs]. And it altered when she heard the grandchildren's voices even though she was unconscious. 

One woman, who said she'd never been close to her critically ill sister-in-law, had felt uncomfortable talking to her but had been allowed to play music to her.

 

She recorded music that her sister-in-law enjoyed and was very impressed when she saw one of her...

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Age at interview: 70
Sex: Female
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One of the things I haven't spoken about is music. I'd got an iPod, and she was very keen on music and one of the first things, well when I went to her flat I found that she'd got an enormous CD collection. I was amazed at how many CDs she had. And this was partly because she used to record things. She'd got a quite complicated system for being able to record things off the radio I think. And we took home a lot of these things and I put quite a few of them, she was particularly, for instance, had always been very keen on Vaughan Williams, and I put some of these on my iPod. And I went to the hospital and said, 'Would it be all right?' Because she was so covered in bits of wiring everywhere that I thought it might not be possible, and I was rather nervous of all this stuff and nervous of doing harm to her. But they were very nice about it and said, 'No, it's perfectly all right' and yes I should play to her. And so I did. 

And I didn't really have much evidence that she could hear it. But it felt quite nice to do this. And I was very moved one day coming to the hospital to find a friend of hers who was singing to her. And this was during the short period when they were slightly lightening the sedation and they were saying that she was taking some breaths on her own and it wasn't all assisted breathing. And he was singing and I felt that she was looking at him, or looked as though she was, her head was facing in his direction. And I was very moved. I was moved by his niceness in doing this. And I think he'd come all the way from Bristol and I was terribly impressed by this. And again feeling rather inadequate that my offerings of music hadn't ever been for very long. I was always rushing off. I hadn't left my iPod behind. 

Usually only two visitors are allowed at the bedside at a time, and some people described how different relatives or close friends had taken it in turns to sit with the patient, ensuring that someone had always been there in case there'd been any change (see 'At the bedside: signs of improvement and progress'). One man, who'd taken turns with his partner's parents to sit by her bedside, said he'd felt it important to be positive and had hoped his positive energy would help his partner improve.

 
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He tried not to watch the monitors too much and, instead, focussed on being positive and on all...

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Age at interview: 35
Sex: Male
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I remember coming back and sitting there all night with [my partner], just sort of talking to her and trying to be positive and stupidly trying to sort of, it sounds naff and whoever's going to listen to it will probably laugh, but trying to sort of push my positive, push energy through me into her. Like I just remember holding her hands all night. And that night I remember she did fantastically well. I don't know whether it was just a combination of the drugs that she had kicking in or the diagnosis being better or what. I don't know. But by that time [my partner's] parents and I, we were just focusing on numbers on the machines, on the monitors and things like that. And you pick certain indicators that you try to understand and watch those ones. 

I mean that's the strange thing, even just sitting by [my partner's] bedside, not necessarily, you can't really do that much with anybody that's ventilated. But I think, and this was another one of the things that I, again I'm absolutely sure it's nonsense but I took pleasure from it, was just being with [my partner] and instead of sitting there, which we were all guilty of at the first instance was sitting there and just watching the machines and just trying to understand, was really sitting there and trying to tell her about the World Cup, tell her about Wimbledon. Not that she would give a damn in the real world anyway. But just tell her about things that were happening and telling her that we loved her and all those kind of things. Trying to give her the positive energy that we needed or I think she needed. And I don't know, I like to tell myself that it helped. I'm sure it probably didn't, but it might have done. And it made me feel better doing that anyway. And that's why I enjoyed being on our own with her really. 

I listened to a lot of music when I was in there and just sort of' created like lists of songs that remind me of [my partner] and things like her getting better and coming home or reminded me of past times, all those kind of things. That helped me a lot. I listened to the same probably twenty songs I can't tell you how many times. That helped a lot. And I mean the nurses helped a lot. They were really, really good, really considerate and supportive.

Many people had felt helpless sitting at the bedside but, by being there and talking to the patient or holding their hand, they'd felt they'd been doing some good. When encouraged and instructed by nurses, some had helped with the patient's care and this again had made them feel they'd done something positive. Some had helped clean the patient's face, sponge their mouth or carried out 'suction'. This is usually done by a nurse or physiotherapist who passes a smaller tube down the large breathing tube to suck out secretions from the chest. Other people had massaged cream into the patient's hands or feet. One man light-heartedly recalled how he'd taken part in so much of his wife's care that the nurses had started calling him 'Nurse'. One woman said she'd become her best friend's next-of-kin because her friend's father was elderly, weak and lived too far from the hospital to visit. She'd ended up doing all the things that would have normally been done by close family.

 

She took in her friend's toiletries, massaged cream into her hands and feet, and sat watching her...

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Age at interview: 37
Sex: Female
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We got there and we were ushered into a waiting room in Intensive Care and what seemed like forever and ever and ever before anybody came out to see us. And they just said basically what had been said to us from the local hospital, that she'd become distressed with her breathing, that she needed a ventilator. So she was transferred there and that. They were just sorting her out and the doctor was with her. And we could go in as soon as he'd sorted her which seemed again like ages but I know it wasn't now, but at the time it did. It was just, felt like eternity. Nobody really knew what was happening apart from the fact that she'd started having problems with her breathing and needed a ventilator. 

The doctor came out, told us that she was poorly and that like she was on this ventilator. Explained to us that kind of, intensive care is like a really, really scary place, there's lots of things going on and lots of machines and lots of noises and staff floating around but we could go in two at a time to see her. So that was the start of the following few days. We went in and out two at a time. Because my friend had no other siblings I became the person that was there all the time, that took her toiletries in, that sat and rubbed cream into her hands and feet and brushed her hair and sat reading to her, chatting to her, playing music, with everybody else - her partner, my husband, her son that had turned up by then, her ex-mother-in-law. 

Then the days progressed and although she was still, my friend was stilling needing dialysis and insulin and morphine and everything else that was going on, she seemed to be making progress again. They started reducing her sedation. She was still in the side room that they'd operated in. And she was coming round so much so that the staff were letting me suction any sputum out of her mouth and she was spitting out because she couldn't swallow very well because of the tracheostomy. She seemed alert at times. Her eyes were open but it was like there was nobody there. At other times she'd be staring out the window but wouldn't be staring out the window and she'd be giggling when the machines started alarming because she was holding her breath and fighting the ventilator.

While sitting at the bedside, many had observed the care and treatment the ill person had received from physiotherapists. A few people had known complementary therapists who'd been allowed by the ICU staff to massage the patient. 

 

When an osteopath massaged her husband the monitors showed improvements, and he continued to make...

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Age at interview: 42
Sex: Female
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The osteopath came to the hospital, spoke to the doctors and they were happy for him to do anything he could to help really. And it came out much later that they had said to him, and as it was put to me, 'Do what you like, he [the patient] ain't gonna make it.' But I didn't know that until a much later date. Anyway he came in and assessed [my husband] and did some cranial sacral work and did some lymphatic massage on him, avoiding his shoulder where the lump was. And actually got me to hold [my husband's] feet. Rest my hands on [my husband's] feet to see if I could feel any changes in his system. And there's this thing called cranial sacral rhythm, just to do it with fluid flow around the body and I actually felt it start to pick up and felt the, almost like - it didn't move that much - but like a kick in his right foot and it gradually got stronger and stronger. And I could feel the whole sort of movement and it was going all the way up my arms. And it was amazing, absolutely amazing, it was as if he had come back to life. 

And [the osteopath] also did some massage around his diaphragm to help his lungs. And one of the tests that nurses were doing was something to do with blood gases which had been at levels of about 7 or 8%, and post this treatment by the osteopath then it had risen to 29% on the blood gas machine on the ward and one of the registrars came round just checking, doing his round in the ward, and I was there and the nurse showed him and he said back to the nurse, 'Well I don't believe that for a minute. Send it down to the lab.' And the sample was taken and went down to the lab and came at 24% and bearing in mind there was also time delays and all that. And that was really good. That really seemed to be the turning point in everything. 

All this time while [my husband] had been on the kidney machine there has been lots of problems with the filter on the machine clotting up because of all the sepsis in his blood and one thing and another. And come the Thursday, that seemed to have settled down as well. Which was the turning point. That was the day after the osteopath had done the first treatment and then they put a new filter on. 

Sitting at the patient's bedside, often unable to do anything but watch, most people said they'd observed ICU staff at work. Many said they'd noticed how hard most nurses had worked and that they'd treated the patient like a person, with dignity and respect. Most said they'd been encouraged by nurses to bring in personal items, such as toiletries and photos, and that nurses had asked for personal information about the patient so they could know more about them as an individual. Often, nurses had also displayed the patient's get-well cards around the bed. One man, who was an ICU consultant, said he'd been able to tell when his father had needed more pain relief and had talked to the trainee doctors involved in his care.

 

If he wasn't at his wife's bedside talking to her, a nurse was talking to her instead, and he was...

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Age at interview: 59
Sex: Male
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I was sat there for days after, just talking like I'm talking now. There was no response. 

They just said to me, they don't know if they can hear you or not, 'But we like you to sit and talk. And you can talk a load of old rubbish, as long as you're, someone's sat there and you're talking.' They said, 'But we don't know whether that person can hear what you're saying or not.' But it's just a thing they like you to do. So that's what I done most days, just sat there, held the wife's hand and just talked like I'm talking now. Probably a load of old rubbish but, you know. 

I mean even the nurses when you was in Intensive Care, I know it was one-to-one, they always used to sit and talk to you, even though you couldn't answer them. They used to, I used to go in there some days and the nurse was talking to you. One of them was telling you about her son getting married and all that. I can remember that as if it was only yesterday. And another older nurse there, and she'd be talking to you all the time, you know, just talking about their own life, you know what I mean, what was happening in their own family. You know, I thought that was very nice, you know what I mean. Couldn't fault them up there. They was very nice in Intensive Care, they was brilliant, you know. And [later] every time you asked for a drink, you couldn't drink because, they were sponging it in your mouth, and they'd give you a cup of tea, wouldn't they, and sponge your mouth out with it. They was brilliant, fantastic, definitely. I couldn't fault Intensive Care one little bit.

While waiting for news, many people were impressed as they observed the treatments the critically ill person had been receiving. Some talked about the drugs or surgery the patient had needed. Others described how ICU staff had used special beds and, very occasionally, had put the mattress on the floor in the hope that this would help the patient. 

 

They were given lots of information about surgery and other treatments, and felt the nurses were...

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Age at interview: 60
Sex: Male
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Husband' Well there were two, I mean the consultant who was dealing with her, they called me in and gave me an explanation of what was happening and how, in order for her to have the surgery, they were going to sedate her and if she was on heavy sedation, basically they wouldn't need an anaesthetic as such because the sedation would act' would carry out that role. 

Daughter' So that worked out quite well really. 

Husband' So that worked out quite well. So the following day she went from ITU into the theatre and had the below the knee amputation which is what the orthopaedic surgeon had advised. Then she came back obviously but she was still heavily sedated and was very unwell really' 

Daughter' There were ' I mean she was stable when they brought her back in. They said that she was okay and her bloods were okay and that the operation had gone well. I mean at that point everything was fine really and it was just that she was in intensive care. She had had an operation and they were just monitoring her and it was cool. That was - I mean that is how it was for about three or four days. We just went in and it was okay. 

Was she still sedated? 

Daughter' Yes. They kept trying to bring her out but then I think her blood pressure went crazy so they kept her sedated and they would wake her every morning pretty much, not fully, but just check that she had come out of the' 

Husband' The other thing that happened within a couple of days, because her kidneys weren't functioning properly, so they then had to put her on haemo' whatever. 

Daughter' The renal kidney thing. 

Husband' It's not called haemodialysis is it? Haemofiltration. And so about this time, it was sort of Christmas weekend basically wasn't it? 

Daughter' It was. Was she on, I don't think she was having her kidneys done on Christmas. She wasn't you know because do you remember on Christmas Day there was that lovely, lovely nurse there. 

Husband' In fact we've actually got a photograph of her in her bed on Christmas Day. 

Daughter' Yes, you freak taking pictures. Yes you are a crazy person [laughs]. 

Husband' And of you sitting in the ITU waiting room [laughs]. 

Daughter' Getting irritated with you. 

Husband''with the Christmas tree. 

Daughter' That was ridiculous. But she is very nice and I remember she gave me hand cream to sort of massage her hands and stuff and they were fantastic. I couldn't fault any of them. They were playing Christmas music quietly. It was all very respectful but also nice. I thought they were great. 

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. Many relatives and close friends described how, after some time, the ill person had shown signs of improvement. Some patients, who'd been brought round, had to be re-sedated for a while because they'd been pulling out equipment vital for their recovery. After regaining consciousness (coming round), most patients had gradually been able to move, talk, walk, and start rebuilding themselves physically and emotionally.

Last reviewed August 2018.

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