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.
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...
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.
He got tired quickly and recommends visitors only stay for short periods of time.
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.
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.
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.
Using bedpans was humiliating but this motivated her to recover and become independent again.
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.
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.
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...
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.
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.
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?
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...
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.
* 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.