A-Z

Intensive care: Patients' experiences

Physical recovery

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.

Emergency admissions
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...

View full profile
Age at interview: 58
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I don't remember coming in the house, my home. I don't remember that at all. I have very little recollection of the next month or two months. Christmas is a bit of a blur. I mean I love Christmas generally but I suppose it's the healing process which you're...Obviously I had brain damage and it's the physical and brain reactions to accepting what's happened to you that you think that. You tend to shut other things out. I don't do ill. I've been with my, the company I work for, for 43 years and I've never hardly been. I wouldn't say I haven't been ill. We're all ill obviously but I'd never taken weeks in illness in a year and it was hard to accept the fact that what had happened to me, if you don't do ill you don't accept it. And the fact that you're body is telling you, you can't do what you wanted to do or what you normally do, it's very hard to recollect and respond.  

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...

View full profile
Age at interview: 44
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
And so I was bought home, still very weak, only taking, well, walking small, very, very short distances. And I came home. It was very emotional, but very frightening. I came home and the escorts that I had, I've got several steps to come up, and I thought, "That's easy. I can walk, lift my legs up." And it was one of the hardest things I've ever done, just to get in those three steps, to get in the front door. I thought, "I'm going to get in there, because I'm not going back." And I came home and that night I had the oxygen on all night, because I was so frightened that I would go to sleep and not wake up again, that I would stop breathing.

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.

View full profile
Age at interview: 60
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Having been under, I'm given to understand from the asthma nurse that whatever it is that they inject into you to keep you under sedation takes one week to clear out of the body for each day you are sedated. And so those sort of chemicals would have taken three weeks to clear out. And I was discharged from the hospital about a week, ten days after, so I had another ten days still, ten, fourteen days still. During that time of course I was very weak. I could have a shave one morning and a bath the next morning, but not a shave and a bath on the same morning. 

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...

View full profile
Age at interview: 47
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
But I was very much in for going out for walks etc. And we'd go for undercover walks i.e. we'd go to shopping centres and what have you. And in the first few weeks, probably the first six, seven weeks, the walks, if I was walking around somewhere, the average shopping centre, it would take two and a half days out of my life, the following days, because I just would not recover and I was just absolutely shattered. 

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...

View full profile
Age at interview: 67
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
When I came home I had a package and I had carers coming in three times a day. One to get me up on the morning and help with the shower. Get my breakfast if necessary for me and one at lunchtime to put something in the microwave. But after a few days I was able to do that myself and somebody would come in the evening to get me ready for bed. And that could vary anything from seven o'clock in the morning and one didn't come until quarter to twelve.  

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...

View full profile
Age at interview: 57
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
When I came home, I was again released with a support network. I had a carer, came in four times a day. Initially, they came in to get me up again, lunchtime, again in the afternoon, and then in the evening to put me to bed. And I had to have 'meals on wheels'. But what I didn't realise was that a lot of people suffer from post-traumatic stress disorder, when they've been in Intensive Care and they tend to push themselves too hard because they don't think that they're achieving anything. And so of course guess who has to get it - me! 

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.

View full profile
Age at interview: 58
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
I have very, very vague recollections of other things. I know, one thing I do remember is when my brother came over, he offered to take me out. He was going to Sainsbury's and he offered to take me and this was going to be a first for me. I'd only got used to the house and the hospital obviously while I was there. I have no recollection of the journey home in my sister's car. Though I will go back to that in a minute.  

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...

View full profile
Age at interview: 46
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
So I get home, I can't, I'm on crutches. I'm on the couch. In a week I'd put half a stone on, one week, went to hospital outpatients, they couldn't believe it. I said I told you she'd [wife] feed me up. 

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...

View full profile
Age at interview: 35
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
I mean one of the real positive things is, this time two years ago, I was so sick I almost died and the consequence of that was that I was so weak I couldn't move and do anything for myself. And it's been a very long hard struggle but two years on I've got, you know, I'm able to look after my three-year-old and I've got a three-month-old baby. And you know at the time I thought I was never going to kind of. You know I was seriously having to kind of examine my quality of life and everything that I kind of thought and took for granted in the course of everyday life. And it is a really, really long, hard struggle back. But seemingly the body, you know, at our age in our kind of mid-thirties, I'm sure that it's a slightly different situation if you're a lot older, but certainly in your mid-thirties the body kind of goes to pot very quickly but you can also put it back again. But obviously I didn't know that at the time and I had a physio working on encouraging me to be able to twitch a finger or twitch a thumb. And you know the thought of being able to lift my arm, let alone kind of, I mean sitting up or kind of standing up were weeks down the line. But gradually it came back.

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...

View full profile
Age at interview: 44
Sex: Female
SHOW TEXT VERSION
PRINT TRANSCRIPT
Eventually my husband had to go back to work. He stayed home for me for six weeks. But it was frightening to be left on my own. Although I knew that people were only a phone call away, I was here on my own. But it was a case of just building up confidence. And so little goals were set. The physiotherapist came out one day and took me for a walk around the block. I couldn't do it on my own, but I found that as long as I had somebody with me then I would go for a walk. The same with driving the car. To start with it was hard, I was using muscles that had gone. But it was just a case of building up confidence. I would have somebody with me, just drive down the road and back again. Silly little things really. But I've done it. 

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.

Planned admissions
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.

View full profile
Age at interview: 43
Sex: Male
SHOW TEXT VERSION
PRINT TRANSCRIPT
Well I was so surprised, the pain relief was brilliant. I bought a little DVD combi for the bedroom thinking, because you know they open up your chest, it's open heart surgery isn't it? It's quite a major op. I thought I'd be in quite a bit of pain for a month or so. So I bought this DVD player, DVD TV combi, thought I'd be watching DVD's and films and things for a month. But there was no pain at all. The only pain was when you coughed. But, as I mentioned, I used to play rugby and I've had more pain after a game of rugby, people standing on you or whatever, than that. The pain relief was brilliant.

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.

donate
Previous Page
Next Page