Intensive care: Patients' experiences
Generally people who are admitted to the intensive care unit as emergencies spend the longest time there. Planned surgery patients tend to have a relatively short ICU and general ward stay, sometimes with a brief spell in a High Dependency Unit. Everyone who has been in intensive care recovers at his or her own pace. Most people we talked to said they felt physically weak when they left hospital. Sometimes complete recovery can take up to two years, particularly if people were admitted to ICU because of an emergency illness, surgical complication or accident. Here people talk about their physical recovery at home after leaving hospital.
How long someone takes to recover after an episode in intensive care depends on many things, including their age, previous health, how ill they were in ICU and how long they stayed there. Most people said they were completely unprepared for the time it took to regain strength and mobility when they left intensive care. Having little or no memory of their intensive care experiences can also affect expectations of recovery time because people may not realise how ill they were at the time or why they feel so weak and debilitated when they leave hospital. Some remembered little about their hospital stay and even the first few weeks back home were hazy.
He had to accept what others told him because he couldn't remember what had happened to him and...
I remember during the period at home that my brother and sister came daily to see me. And that was, I understand from my wife, she looked forward to that obviously because it relieved her from looking after me. But having said that I have no recollection or very, very slim recollection of her looking after me. She tells me things now and I don't believe her. You didn't do that for me because I can't remember it. So, I find that very difficult and we can have difference of opinions. I have to accept what she says though it doesn't sit well for obvious reasons. I don't remember it so it didn't happen. She remembers it, she done it, so I have to accept it.
Weakness and mobility
In the first few days and weeks after being very ill in intensive care, people often found that the slightest activity 'wiped them out'. Most said they were weak and immobile when they first got home. Normal daily activities such as washing, walking, cooking and cleaning were often impossible and many found climbing up and down the stairs in a day was all they could manage. Some people had their beds moved downstairs when they first got home because climbing the stairs was too difficult and tiring. Others had to go up and down stairs on their backsides or hold on to furniture as they walked around the house.
She found it difficult to climb the steps leading to her front door and had to be wheeled around...
When I first came home I slept downstairs because I couldn't do the stairs. And my husband slept on the sofa beside me because I just did not want to be left alone. I was frightened. The first day I was home, I stayed in bed. My children were around me, I was so pleased. But it was frightening. I had to, well, I couldn't, I sat on a computer chair with wheels to be pushed around in the home, at home here. And I still had to be helped to be washed.
One woman had come home with portable oxygen to help her breathing. Another came home with a VAC machine to help heal her wound faster and more completely than if she left it to heal naturally. ~Others said they returned with walking sticks or had to use a wheelchair to help them move around. One man said he came home with his tracheostomy and, on one occasion, had to go back into hospital for the day because he accidentally pulled it out.
He could shave one day and have a bath the next but didn't have the strength or energy to do both.
You just feel exhausted?
Well, I was weak, yes, not exhausted. But I mean you are often weak after an asthma attack anyway, you know, so that was expected. But I had expected that it would take about three weeks to recover, which is usual after an asthma attack. But this didn't, this took much, much, much longer, a good two months, a good two months, probably three. Yes, three months really.
Some people found their own ways around feeling weak and being unable to cope with everyday chores. One couple decided to stay in a hotel so they didn't have to worry about cooking and housework and then decided to go on a cruise. Others, who lived alone, said they appreciated getting their meals through the Meals on Wheels service.
He needed a few days to recover from a short walk and had no strength to do the jobs around the...
Now it's like getting down to, if I actually go out now to the average shopping centre and we spend some time, I can probably walk about a mile, but we tend to have a rest in the middle of that because we'll pop off for a cup of coffee. And then it'll only take a day, maybe a day and a half to recover. So, you know, it's time-controlled, you know. But I do as much as I can. I mean I'm a lousy house-husband these days, but I sort of put the washing in the washing machine and the dishes in the dishwasher. But I've lost, I mean I'm not doing the things that I would normally be doing if I was in this position. I mean I'd be on the computer, getting on the phone, doing this, finishing off the bathroom that I'd started and things like that. And getting rid of this lino that's behind the settee, because I've got to do the kitchen and get that sorted out. But I just haven't got the physical capabilities. I haven't got the strength to do it in my arms. The legs are getting a lot better but the arms are taking a lot longer. I can't work that one out.
Yeah. Did you expect to be up and doing things much quicker?
Oh, yes, yes. No one told, I mean they've advised me that, you know, you can lose 50 per cent of your muscle mass in no time whatsoever. No one told me just how bad that was going to be. Well, I don't think anyone could tell you. You have to experience it to be there. Because from being able to sort of get up and walk and do whatever, you end up with a situation where, you know, you have to get a stick to get you up. I had to have a walking stick to walk. I mean fortunately I've been able to put that to one side. But that's my pedantic attitude, not the walking stick. I should really, I mean we keep it in the car just in case. I've got two young kids, which, that was the critical bit, I couldn't pick my children up. They were running up to me and, physically, I could not pick them up. Which I can at least get them on me knees now and what have you.
Some people explained how carrying on with physiotherapy when they first came home helped them re-build physical strength. Others, who'd had surgery in hospital, said that they'd been visited by district nurses who changed their dressings. Many people stressed how much support they received from carers, who helped them cope with personal care such as dressing and washing.
Physiotherapists, carers and an occupational therapist helped her until she was strong enough to...
In the morning?
[laughs] Yes. And I also had a physiotherapist coming to the house and an occupational therapist and that was the first six weeks. If I needed it after then, they would have discussed whether I needed it and I had to pay for it. The physiotherapist the first couple of weeks, he came three times a week which was very good and they'd take me down the road for a walk and now I'd come back and do exercises laying on the bed and then some sitting on a chair and then out in the kitchen with one hand on the sink unit and do some more exercises that way. And so it was quite intense, if you know, quite tired after that [laughs].
And the occupational therapist, she took me up to Waitrose and to do some shopping. She suggested I should walk but I didn't feel, especially it was very hot at that time, didn't feel I could walk all that way so she took me in her car. And she also took me to the optician.
At first she had meals on wheels and a carer coming four times a day, but soon she could look...
So by the time, I mean, for the first two or three days, we got rid of the carer coming in the afternoon, and they came, they used to get me up. But after two, three mornings, they found I'd got myself up because I couldn't lay there waiting for them, all morning. Although they used to come by nine o'clock, you know, that was half the day gone, as far as I was concerned [laughs] because as soon as I woke up, I had to be out and about, you know.
'Meals on wheels' went after about three days because I didn't like them. And then after about a week, I think she just used to come in the morning and again in the evening to put me to bed. And even after about ten days, it got so that, they rang me in the evening to see if I wanted anything because I found that I was managing quite well, really.
Many people talked about being tired when they first got home and feeling completely drained of energy after doing something as basic as walking. Being extremely weak, needing help with many basic activities such as dressing, washing and cooking, some had felt 'like a child again'. Others had to rely completely on relatives for help until they got stronger.
He felt like a child the first time his brother took him out and was very emotional.
I remember my brother, he walked before me to the front door, opened the front door. He then opened the outer door because we have like a lobby. I then shut the front door and the feeling that came over me of the hugeness of the world, God. I mean, it was almost like being a child again. It was awesome. I'm about to step out of the door and there is, and all I was used to was rooms. There is four walls and a ceiling and a floor. All I'd got when I stepped out the door was a floor. There was no walls, no ceiling. I stepped out the door and I said to him, it was being like a child again. It was frightening. It was awesome.
I stepped outside the second door and the feeling was awesome. It felt, I felt so weak, so oh I don't know. It's a job to explain. It was like, I was a child and I was going out with my father and I was looking for my father to help me because of the fear I was going through. But anyway we walked down over the path and, of the drive and I followed my brother and we got to the curb and there was traffic coming left and right and I felt so weak. Because of my ankle injury I'm thinking if I start walking across the road now and a vehicle comes I'm not going to get over. I can't break into a run as I could before the accident. And again it was the second moment of terror, of panic. It was awesome. Anyway I followed him. He didn't understand how I felt. Not because he didn't understand but because I didn't tell him. This issue again is a macho thing I think. There are certain things you will say and other things you are just not, you would suffer. And this was one of the things I was going to suffer.
Anyway we got into the car and I found that very strange because this is a very claustrophobic, and though he had quite a large car it still felt that, the roof was only inches away and the screen was only inches away. And I'd only been used to rooms and then all of a sudden I'm in the big outside world and then all of a sudden I'm in something even smaller. But I think I could handle it.
Many people felt frustrated because they wanted to do things but were too weak or tired. One woman said, “On several occasions I'd go to stand up and think 'I can't do this', but in my head I was thinking I want to stand up and turn the television over.” People also recalled how they tried to do too much when they first felt they were improving. One man recalled falling down and then taking it slower again. Others remembered spending days feeling exhausted having pushed themselves too much.
Some people's physical recovery included gaining weight. Others said they had to change their diets or eating habits, for example eating smaller portions more frequently.
It took him four months before he could walk without a stick but he slowly regained mobility and...
Yeah I put on half a stone with all the food and everything and then went back to the hospital. And the Doctor couldn't believe I put so much weight on so quick and back home again but I was using a stick then, after two weeks, instead, a walking stick so I weren't too bad. I still couldn't go out of the house, only to get air and that. But with all me family round me, I felt that I would feel better and better every day, eating loads and I just felt better than being in hospital. I know I couldn't come out of hospital but when I could, she [wife] got me out. And the nurse come every day, changing me leg and so that were alright and after about four week, Christmas day it were yeah, I went out Christmas day to the pub with family like.
And I started, I felt better and better. I had me stick for about three month, no four month, before I could walk without the stick. And I kept going back to hospital every three weeks, well every week, then every three week, then every month. And I just kept putting more and more weight and they couldn't believe it. And in about three month, I put three stone on. So I were like eleven and now I'm nearly, it's eleven month now, and I'm nearly twelve stone.
Improvement and recovery
Most people said they gradually regained strength and mobility day by day. Walking a bit further each day, doing more for themselves, building on their exercise regimens were all important signs of improvement. Many said they became less frustrated the more they could do things for themselves again and when they could go outdoors. This often started with short car rides or walks, then shopping trips and, later, holidays. Some noted that, although they were still very weak, because their disabilities were not visible other people could be inconsiderate when they were out in busy places.
She was extremely weak when she left hospital but was gradually able to look after her daughter...
Many people stressed the importance of setting themselves realistic goals while they were recovering because it gave them a sense of achievement when they succeeded.
At first she was afraid of being on her own at home but set herself small goals and gradually re...
The biggest challenge was walking to the school, which is a fair distance away, to take my daughter. And I did it. That has been, that's the only way I've managed to do things is by setting goals and reaching those goals.
For one woman, having a young baby to look after motivated her to get better as quickly as she could. For another, being strong enough to have another baby encouraged her to rebuild her physical and emotional health.
Most people stressed that, although recovery took longer than they'd expected, they now felt much stronger physically and able to look ahead. Many had made important changes to their lifestyles, such as stopping smoking, eating healthier food and working less (see 'Attitudes to life during and after recovery'). Some people also talked about interruptions in their recovery, such as infections. A few said that, after lots of progress in the first year out of hospital, they were now 'slipping' in terms of exercise.
People who were admitted to ICU because of planned surgery were also weak when they came home. A few who'd had cancer had to have chemotherapy a few months after returning home. Others, who'd had heart surgery said that, although they'd felt weak when they first left hospital, they soon felt 'wonderful' because they were stronger than before their operations. For one man, it felt like being 're-born'. Others described how the surgery had changed their lives and enabled them to do so much more physically than before.
He had very little pain after the operation and on his second day back home was able to walk a mile.
So I started walking, the second day I managed a mile, the second day I got home. Because I live in a rural place and there was this, about two hundred yards from my house, there's a little gate that leads to a farmer's field and I couldn't walk up to that before the op. But the first day I came home, I was able to walk, that was the challenge to me. Before the op I said, the first day I come back, I'm going to, so it's things like that that I do now. That's what I've changed. And I've explained how, with work, say if I've got lots of notes to do, before I would do three quarters of it and leave the rest till tomorrow. Now I'll do all of it today and it's the same with mountains. I'll say right but I'll go to the top. But in the past I could say right I'll go nearly to the top and say I've been to the top. It's like I'm challenging myself more.
Many people recalled how relatives looked after them when they got back home, and some noted spending more time with their partners than they had for a long time (see 'Impact on family').
Last reviewed August 2018.