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Intensive care: Patients' experiences

Emotional experiences in ICU

Admission to an intensive care unit is often a brief but extremely important hospital experience for most people, and one that affects everyone in different ways. Here people talk about how they felt emotionally while they were ill or injured in intensive care.

Feelings of weakness and dependence
Many people - particularly those who'd been admitted as emergencies and had spent a week or more in intensive care - said that although they didn't 'feel ill', they did feel extremely tired and weak. Some realised only when they were moved or 'hoisted' out of bed to a chair how weak they actually were. Even after just a few days of being ill and motionless in intensive care, muscle wastage and neuropathy can make many normal, daily activities extremely difficult. Understandably, patients hadn't known this, so this weakness often surprised or shocked them. Although the causes of ICU neuropathy are poorly understood, it is estimated that 33 - 57 percent of patients who stay in the ICU for longer than 7 days could get neuropathy.* Exact data is hard to find as there is no agreed definition of the disease.

 

Everything was done for her by nurses because she was too weak to move.

Everything was done for her by nurses because she was too weak to move.

Age at interview: 40
Sex: Female
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So, and the bed was so high as well, the bed was like chin height to everybody. Well really not that high [laughs], but it was like really high. I just couldn't move, I couldn't even lift my leg up, I couldn't turn on my side. I just could lift my finger up and point it to the drink on the tray for someone to give me a drink. I couldn't comb my hair, I didn't even think about combing my hair or brushing my teeth. I just lay there, staring at everyone, watching, waiting for them to do something. 

Many people, who had been strong and independent before their illness, found their dependence and weakness difficult to accept. Frustration sometimes set in if they were too weak to write and couldn't communicate in any other way because breathing equipment prevented them from being able to talk. Some couldn't eat by themselves, walk, brush their teeth or comb their hair, and said they spent a lot time 'watching and staring'.

 

He was dependent on others for his care and communication, and felt his 'real self' was trapped...

He was dependent on others for his care and communication, and felt his 'real self' was trapped...

Age at interview: 68
Sex: Male
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The level of care was at a high level and I felt fairly secure, even though I still continued with my hallucinations, even though physically I was in a weak state. I couldn't get out of bed, so I had to be taken out of bed with, by means of a hoist. And having been a fit person this was a tremendous load, burden to carry, being ultra-dependent on other people, not being able to sit up in bed, I was so weak. And I'm not saying that feeling sorry for myself, but that's the reality, that's the state in which I found myself. 

And I realised that I was beginning to think more clearly, that I recognised that my physical state wasn't good. And when I tried to express myself, before I started to speak properly again, my wife [wife's name] and son [son's name] tried desperately to help me in communications. And we developed sort of a language where [my son] for instance would run through the alphabet and I had to nod at a letter, and we built up words that way. Only my mind and body was reacting much more slowly, he'd gone too far down the alphabet. And this was at its most relevant when all I was asking was that the rest behind me be raised so that I was lifted up in my bed. 

Well, that took an absolute eternity to get the words out, I couldn't articulate them, but I could nod at the letters. And I tried to write the letters, but I'd lost my dexterity. I couldn't write. That again was another burden.

I've just been reminded by my wife [wife's name], in fact corrected, that the experiences about trying to communicate and the frustration was associated with that actually occurred in the Intensive Care Unit. I thought it was in Progressive Care, but I stand corrected. It was frustrating because I knew what I wanted to say and communicate but was unable to do so. And I felt increasingly, both from that experience and when I certainly was in Progressive Care Unit, that there was the real me trapped inside a piece of meat. I think I recall using that expression. I felt like a lump of meat on a butcher's table with the real me inside it but not able to get out.

Because they felt so weak and tired, some people said they didn't want many visitors while they were in intensive care. Having to be alert or to make an effort for their visitors was often 'hard work' and draining. 

 

She asked some of her family not to visit so she could have the energy to do her physiotherapy.

She asked some of her family not to visit so she could have the energy to do her physiotherapy.

Age at interview: 46
Sex: Male
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Patient' Everybody was so relieved that I was well, you know, I was alive, which I didn't realise because I didn't know what they'd been through. I was having too many visitors and it's really not like me but I was really quite assertive about it. Because I was having so many visitors, I was too tired to do my physio and I knew that was happening. And it was a really tough decision but I made [my partner] tell my family, and this is my sisters and you know my brother, people I love, my daughters that I love so much, but I wanted to get out of hospital more than anything. So I stopped the visitors coming didn't I? Which was tough for me, tough for them and tough for [my partner]. 

 

He got tired quickly and recommends visitors only stay for short periods of time.

He got tired quickly and recommends visitors only stay for short periods of time.

Age at interview: 60
Sex: Male
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Patient' I had my birthday in there [ICU]. And there again the nurses were great, they put up all my cards around my bed and did everything they could to make me welcome, and I had visitors in as much as possible. And I had quite a crowd round my bed on the day didn't I? 

The only snag was my attention span was so short and I got tired very quickly, I kept dozing off. And I can't go to sleep when I've got visitors, not really, so it's not a good idea really for visitors to stay too long and they knew that.  

Mother' We used to stay all day at the beginning. And then go in for ten minutes, as soon a he began to look tired we came out. But we were there if, you know, if needed.  

Patient' I mean I think that if the visitors see that the patient is drowsy to the extent of dropping off to sleep, best that they leave for a little while and perhaps come back later because you have the feeling that you ought to try to stay awake for them. It doesn't matter if they say oh you go and have a little rest, go to sleep, we won't mind. It doesn't work like that somehow. Fortunately there was a good waiting room wasn't there, that you used to go to. 

A few people wanted only close family to visit at this time, not wanting others, particularly young children, to see them so ill or looking so different (see 'Impact on family'). Others said they couldn't remember exactly who had visited them and only learnt that certain relatives, friends or colleagues had visited through later conversations during their recovery at home (for more information see our section on Intensive care: experiences of family & friends).

 

She wanted only close family to visit her while she was not looking like herself.

She wanted only close family to visit her while she was not looking like herself.

Age at interview: 41
Sex: Female
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I remember people wanting to come and see me, my friends and their husbands and people like that, and I just couldn't be bothered, couldn't be bothered with people visiting me. Apart from the fact that you don't feel normal, you feel like you don't look normal. So I remember thinking, "I don't want anybody seeing me looking like this.'  

And just going back to something you mentioned earlier. You said that you didn't want too many friends visiting. At what stage did you feel, 'I'm ready to see my friends again'?  

When I started to look a bit more like myself, a bit more normal, and you know, I just looked like me. For the first few weeks I didn't look anything like me, and people, you know, people on the unit used to say, you know, all the time patients come in and relatives say it doesn't look like my relative and you can't appreciate that. But they could from seeing me 'cause they knew what I normally looked like and they say I was nothing like that, I was just blown up with fluid. I was blue I'd D.I.C. because I'd bled into all my tissues and my eyes and so I didn't even resemble anything like me.

Feeling powerless
Feelings of being 'completely out of control' in intensive care were common because many people were unable to do anything for themselves. Others explained how being so weak made them feel they were like children again as they had to re-learn how to do many normal daily activities. Having to rely on medical staff for every kind of personal care troubled others.

 

She was unable to move or talk and felt isolated and powerless.

She was unable to move or talk and felt isolated and powerless.

Age at interview: 55
Sex: Female
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You lose, that's it, it's a loss of control. That's it encapsulated. You have no control over yourself any longer. You are effectively in a torture situation. You are tied to a bed. And I remember saying a lot of times, "I hate this bed." And I can't tell you how much I did hate that bed. They kind of misunderstood it. It wasn't the physical bed as such always. It was the fact that I was riveted to it. I was not able to get away from it, up off it. I was attached to equipment, which attached me to the bed physically. I was spread-eagled on that bed. I didn't have a covering apart from a sheet, a terrible blue and white thing in a J-cloth kind of fabric, which was attached on either bits of the bed. And they would lift up bits of it, and you were naked underneath that with tubes coming out of you. The indignity of that, the indignity of it. The material itself, you know, you couldn't even be covered with something, a sheet stretched out. It was this J-cloth, throwaway material. That's how little worth you were. That you'd wash that up and you'd throw it in your bin in the kitchen. That was keeping my dignity so-called. That was, it was a disrespect. So I'd lost control out of my bodily functions. I couldn't speak, I couldn't communicate, I couldn't write. I was alone. Only what was in here [inside the mind].  

 

Using bedpans was humiliating but this motivated her to recover and become independent again.

Using bedpans was humiliating but this motivated her to recover and become independent again.

Age at interview: 46
Sex: Male
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Patient' I mean one of the big, big things for me, and I don't know whether this is true for other people, the bedpans were just, it was just total humiliation. And I mean the nurses were as kind as they could be but the big driver for me was to work with the physio, to get myself out of bed so that I could go to the loo by myself. And the other thing was the physio, because I had a lung problem, I was doing a lot of breathing exercises and I was really obedient about doing my breathing exercises because the breathing exercises helped me come off the antibiotics so that stopped me having an upset tummy. So that meant it was less embarrassing to have to be asking for bad pans every five minutes. Which I suppose sounds a bit like you know all my family were worrying about whether I was going to live or die but I was worried about the humiliation of going on a bed pan [laughs].  

Partner' That was partly because you hadn't realised how ill you'd been as well. Your first thing was waking up in the bed, people having to help you go to the loo which, why is this happening? You didn't have any idea of how, what we'd been stood there for four weeks waiting for you to wake up.

Feeling alone
Some people had been depressed because of their weakness and very slow recovery. Others had felt frustrated, bored, lonely or isolated. 

 

He felt bored and frustrated and had to learn how to walk again.

He felt bored and frustrated and had to learn how to walk again.

Age at interview: 47
Sex: Male
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I was in Intensive Care for thirty-odd days. The staff in general were absolutely brilliant. There were occasions when through my frustration I became frustrated by them, and subsequently they became frustrated by me. There were situations where again in my hallucinatory state I may have said something or indicated or implied that I wasn't happy. I think that was more the case of, I was frustrated at not being able to move out of the bed and having to have somebody clear up after me, for want of a better term. 

Because I was moaning that I was still about, not still alive, but still sort of, and I was bored. "I've spent thirty days in...". He said [the doctor], "You're always moaning". Because I was just bored, because there's nothing to do. You're laying there, and people don't realise just how horrific that can be. I mean I had various sores on my feet, which have only recently gone off my heels, compression sores. I had a sore butt, where I'd been sat in a position for God knows how long. And I had the doctor telling me, "Well, surely if you've been in ICU for thirty days and you've come out, you should be really happy". I said, "Well, I am happy." I said, "But..." I said, "But me butt hurts" [laughs].

 

She would have liked more conversation and explanation from the nurses to ease her feelings of...

She would have liked more conversation and explanation from the nurses to ease her feelings of...

Age at interview: 55
Sex: Female
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I was very much attached to the bed that I was in. The bed moved. It was a special wave bed, which was very uncomfortable. And I actually had a very sore back in this bed. But sometimes they would be busy, sometimes it's because they were short-staffed I'm sure, and sometimes it was because somebody else that needed far more help they'd gone to. And you were kind of aware of that but couldn't see it. So you were, you were isolated. They would come round and fiddle with things behind you, but you couldn't see what was there and you weren't actually told what was there. And for a long time of course with the tubes in my mouth I couldn't ask. 

So things, you know, if they had actually explained what's around you, what's going on and talked to you, it would be great. But there was very little conversation at all. I could, you know, out of all the nurses that were involved, which I subsequently know were involved, there was probably two of them that stand out as being vastly different from the others.

Feeling calm or hopeful
Some people said they felt 'hazy', confused or paranoid because of the morphine they received to ease pain, others felt calm and peaceful because of it.

 

He felt calm and accepting because there was nothing he could do but rely on the help of others.

He felt calm and accepting because there was nothing he could do but rely on the help of others.

Age at interview: 63
Sex: Male
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The anaesthetist explained to me that that carried, the epidural would have carried an extra risk, so it was the morphine clicker. And I don't know whether it was because of the morphine but I actually felt very calm and at peace with the world in a way in Intensive Care because you realise that you, there's not much you can do. You can't even move about because of all these tubes and things. 

I think it's, because you're on drugs you are not as I have all my life done, worrying about survival and worrying about where the next dreadful disease is going to hit you. You kind of lose your hypochondria when you're really ill. You know. And you have to sort of throw yourself on their expertise and accept it. And I did have a very calm sense of acceptance and I mean, it sounds a bit silly, but it's almost a spiritual experience. What do I mean by that? I mean that for a second time in your life, the first time being when you're an infant, it's out of your power.  

You can't do anything. You know, my little grandson, he's now getting into the, at the age of two, he's beginning to feel his own power and he's then saying, "No. Go away." But before that they can't. And it's, in Intensive Care you're a bit in that state of the infant who has to trust his mother and father and grown ups, and that's quite a refreshing and spiritual sort of thing I found.

One man said that, despite being ill, he stayed positive throughout his time in intensive care because of the support he received from his family. Like many, he focussed on getting better and being well enough to go home. Another man discussed the targets he consistently set himself to improve and recover.

 

He aimed to breathe without equipment and to move to a general ward by certain dates.

He aimed to breathe without equipment and to move to a general ward by certain dates.

Age at interview: 60
Sex: Male
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Patient' All the time I was in there really, I had to have aims. I aimed to get off the ventilator by [my wife's] birthday, October the thirty-first, and I did it a couple of days beforehand. I then aimed to be off, have the tracheostomy out by then, end of January, which I did, by a couple of days again. So all the time I was in there I had to have some sort of aim to go for and even when we first went to the B20 Ward where I had the relapse, the doctor had to be convinced that I was ready to go down there to B20 and I put on a good show and he was convinced I was prepared to go, ready to go down there 'cause I wanted to advance. I didn't wanna sit, lay there in bed all day long. But that proved wrong and that moved, it did prove I wasn't ready to go, nowhere near ready to go. That was a real mistake. But all the time I'd set myself goals and, in nearly all of them, I did meet.  

So that kept me going as far as eight months. Nine months ago if you'd said me, "You're gonna spend eight months in hospital [participant's name], in the same bed, in the same ward", I would have said, "You know, I don't do that. I don't do sitting around. I'm a busy, busy person." Anybody who knows me knows I don't sit still, I'm always doing something, I'm always on the go, thinking of something do you know?

Wife' Projects.  

Patient' Got a garden like this, you know, it don't just, you know we do it ourselves. And work, I'd eased off a little bit with work. I was sort of semi-retired as it were but, anybody will tell you, "No, [participant's name] won't sit still for eight months". But I'm afraid [participant's name] did. 
 

Some women praised the pampering and care they received from nurses - including nail-care and shaving legs and under-arms - which helped them feel better about themselves and how they looked.

 

She felt more positive after having her legs shaved by nurses and her eyebrows shaped by a beauty...

She felt more positive after having her legs shaved by nurses and her eyebrows shaped by a beauty...

Age at interview: 44
Sex: Female
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But when I was in Intensive Care and they used to say to me, "Do you want to see, shall we get the mirror, [participant's name]?" Because they used to come, they washed my hair, I could have that done every day if I wanted, and they'd dry it. 

They, this sounds odd but they'd shave my legs, you know. They really, they'd come and they'd rub cream on my hands or on my feet.  

While I was in there I had a period. And that was, because I couldn't do nothing, and that was when I first come round, and they were brilliant, you know. They never, you know, like I say it was very unpleasant for me, and to think that I had to rely on other people to see to things. But it just, you know, I think, after going through all that there, I think there isn't much now that I couldn't cope with. 

It's made you a much stronger person? 

In some ways, yes, and in other ways, no. But like I say, as a treat, I said to my mum at the time, I said, "Oh, you know, I must look a complete mess." My eyebrows, things, just silly, not really, no, it's not silly things, it's just things to make you feel better. And an auntie paid, I had a lady come in and do my eyebrows. You know, they asked if it was okay, and they said, "Yes" you know. Because it was more, the only time I had a male nurse was when I was first admitted. When I went into the room on my own I had just the ladies, the girl, you know. And they said, you know, "We know what it's like, [participant's name], you know, you don't want to be sat in here with hairy legs" you know. Silly little things. And they were brilliant. 

Many people described how they gradually regained their strength and improved. One man had stayed an extra day in intensive care to help translate for another patient. Others described how they felt when they were well enough to be taken outside again for the first time since being admitted. One woman had insisted on being taken outside as it was so long since she'd seen natural daylight and felt fresh air. Others didn't go outdoors until they left hospital.

 

She was adamant about being taken outdoors as she'd been in hospital for so long.

She was adamant about being taken outdoors as she'd been in hospital for so long.

Age at interview: 38
Sex: Female
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And I had, because of the oedema there was pressure on my lungs and that's when I was taken into ICU. I think the day before they were going to take me to ICU I do remember saying I wanted to go outside because I'd been in the hospital for so long that I couldn't remember what outside is like. And it was a... I didn't throw a tantrum but I was like adamant, "I want to go outside, get somebody to take me outside or I'm just going to go outside." And they did take me outside for about an hour or so. 



* Johnson, KL (Apr–Jun 2007). "Neuromuscular complications in the intensive care unit: critical illness polyneuromyopathy.". AACN Advanced Critical Care 18 (2): 167–80; quiz 181–2. doi:10.1097/01.AACN.0000269260.99169.70. PMID 17473545.
 

Last reviewed August 2018.

Last updated May 2015.

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