Intensive care: Experiences of family & friends

Hospital discharge and rehabilitation

Patients who are discharged from intensive care are likely to spend time recovering on a general ward before they are well enough to leave hospital. Here people talk about the progress the ill person made on the ward until he or she was discharged from the hospital back home or to a rehabilitation unit.

Many people said that the ill person had made gradual progress and could do a bit more for themselves every day, including moving, gripping, lifting arms and legs, and walking. For a few people, the move to a ward was difficult because the patient had still been confused and hallucinating. Some recalled how the patient had become more aware and alert once on the ward. Others explained that the ill person had been hallucinating after coming round in ICU but, since being on the ward, the hallucinations had been wearing off or had worn off completely.

Their relative had a lot of hallucinations while on the ward but became more aware as time went on.

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Age at interview: 60

Sex: Male

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Daughter' She was being quite difficult at this point. It took about five days, a week for her to start' because it was strange because at the beginning when she first went back onto the ward she was like a hundred per cent psychotic, delusional, really difficult. But then each day it would almost go down by ten per cent, so in about seven days, she was practically normal. And you could see it, even at the end you would think she was normal, and then she would say something crazy. But that just went after a while and she was absolutely normal again. But she didn't remember any of the strange psychosis.

Husband' No, none of it at all.

None of it. None of the time in ITU and that first big in the general ward?

Daughter' No she couldn't remember that at all.

Husband' I think bits of it have come back since.

Daughter' Later. But it was difficult.

Some people talked about the progress their relative had made after having serious head or brain injuries. Many described how the patient had mood swings or had become angry, agitated or frustrated very easily. As well as recovering physically over time, they'd also had to recover mentally as well. This can take time and many relatives explained how the patient made small progress every day and this had been extremely encouraging. One of these people said her husband had become very depressed and aggressive on the ward and she'd initially been worried about his recovery and what the future held. Every day, however, he'd been able to do a bit more for himself.

At first her son would often get angry and aggressive but, gradually, he became more aware and...

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Age at interview: 49

Sex: Female

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One night [my son] actually had a Black nurse and he didn't take to her and he was abusive. Another thing with a head injury, often they don't know what they're doing. And we were mortified, you know, we were, 'Oh, goodness.' But that's just something the nursing staff have got to deal with. They, you have got a patient with a head injury, unfortunately, there is, you know, you can't actually, it's not like punishing, you can't sort of tell them off or anything. He was totally unaware still. It was a good three, four weeks before he had any recollection of what he said or did. And so any abuse that's caused or any harm, I mean the physical obviously you can't have, but it's unintentional. They are not aware of what they're doing. And I do think there has to be a little bit of leeway.

And so we ended up having to spend another night up there because he'd called us in. And that's the other thing, because he's wandering, didn't like to be restricted at all, he would get quite angry. And therefore we sort of would have to go in and look after him. I tried to get there every morning. So although we were back in [place name] every day I would try and go in for breakfast. And in fact one morning they actually put him on the phone to me and he said, 'Where are you?' [laughs] And to hear his voice on the phone was incredible.

And the nurses as well, they, going back to [the first hospital], there was one day when we'd come, we'd buzzed to say can we come in and see him and they called us through and they actually had him walking towards us, and it was the first time he had. And my in-laws remember the first time when they, when he actually said, 'Hello, nanny and granddad'. And up until then he hadn't actually addressed them.

Then there was when we were at [the local hospital] there was one day when he was looking in the mirror and I suddenly realised he was actually looking at himself, he was doing his hair. Because for a long time there was a very glassy stare and apparently they're looking at the horizon just to get their balance. But they're not seeing anything else. It is literally just looking ahead and so it's this horrible stare where they're not looking at anything and that's quite unnerving.

Although their son was very weak, one day, completely out of the blue, he got up and walked...

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Age at interview: 51

Sex: Male

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Mother' And it was noisy and it was hot. But we did have wonderful moments. There was one Saturday morning, we had the Patientline television thing going. And I was tidying his locker, and I heard him speak. And he shouted at the television. Which apparently is not unusual. 'Do I have to watch, do I have to put up with this sort of rubbish?' or words to that effect. And I was so stunned that he'd spoken that I didn't really take in what he said. And I then tried to get him to say it again. And he wouldn't, or he couldn't. And it was a long time before he really started speaking. And when he did, he actually shouted at another patient to, 'Shut up'. Because there was an old man who was gabbling all the time very loudly. 'Shut up' he said.

In the end with physiotherapy, he had a bed which they'd kept the sides up, because he was rolling about, thrashing about. And they had to get bumper strips, like they got for a baby's cot, to stop him banging his head on the side. But they didn't, either the sides or the bumper strip, didn't reach the bottom. There was a gap of about 2 feet. And he, once he was moving around in the bed he was shuttling down to these gaps. And it was quite clear that sooner or later he was going to try and get out. And so in the end it happened that we were there, the physiotherapist was there, he shuttled to the end of the bed and stood up.

Father' And when -

Mother' I was in front of him. And I went, 'Come on then. Come on'. And he walked.

Father' And he didn't just walk actually. He strode off across the ward and we couldn't keep up. And so

Mother' It was wonderful. Because we'd not known if he was going to be in a wheelchair for the rest of his life. And all these things just went. And they weren't important any more. We didn't need to worry about how we were going to modify the house for a wheelchair. Because he was walking.

Father' Then we had a rather strange incident very shortly after that, in that he could now walk, and we were taking him to the ground floor of the hospital where there was a cafe, in a wheelchair at this point, just to get a cup of tea and show him something outside the ward.

Mother' Just give him a break, yes.

And how long had he been actually lying down? A month in Intensive Care?

Mother' Yes, and then -

Father' And then probably a good three weeks -

Mother' -- two to three weeks.

Father' -- in the general ward.

And he was able to walk?

Mother' Yes.

Father' Yes.

Once the patient had started improving and becoming stronger some had needed surgery to help with their recovery. Although it is quite rare for patients to need amputations, one patient's serious infection spread and she needed two leg amputations. One woman was extremely surprised when doctors told her and her husband that, during the time he'd been sedated in ICU, his body had recovered by itself and the operation he'd been waiting for and dreading was no longer needed.

Their relative had an infection and, when it spread, she needed to have more surgery and another...

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Age at interview: 60

Sex: Male

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Husband' The problem was that this wound wasn't really healing properly and I suspect they might have battled on trying to get it to heal. But the difficulty was then in the other foot, she began to get some'. Basically virtually the first or second day she had been in, in November she got out of bed and her foot had slipped and just banged against the wall, the other foot, and there had been a little bruise there which sort of disappeared but never fully disappeared and that suddenly began to get worse. And eventually it was obviously deteriorating so the vascular surgeon decided that he would try a bypass on the left leg and so when they took her in to have that done, which was Easter time wasn't it?

Daughter' No. Are we into Easter now?

Husband' Yes. She had something against the major Christian festivals at this stage. In ITU as well as at Christmas.

Was she in hospital all that time?

Husband' Yes. Hm. Yes. So basically he did the bypass and at the same time they then did an above the knee amputation'

Daughter' Yes because it wasn't healing properly.

Husband''because the wound just wasn't healing and obviously the blood supply wasn't'

Her husband was anxious about having surgery but they were both relieved and happy when doctors...

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Her husband was anxious about having surgery but they were both relieved and happy when doctors...

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Age at interview: 42

Sex: Female

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The surgical registrar come round and explained the situation and what they were going to do as far as the operation was concerned, including putting a little arrow on him showing where they were going to do the operation and he said, 'What is that, the 'cut here' mark?' 'If you like,' she said. He got really worried, he is a bit squeamish at the best of times, and he had got really a bit upset and a bit faint at the thought of all this going on. So they moved him into the main ward to keep an eye on him so he didn't pass out. And we sat there chatting once I got there. And he got a bit upset, at one point he was really scared because the operation was going to be near his heart and there were risks about how the survival rate was and this sort of thing. And he had a little weep. And I tried to comfort him. And told him he was in one of the best hospitals in the country for this sort of thing, a centre of excellence and all this which I was persuading myself about as well.

When they first said he was being transferred to [the second hospital], I thought, 'Why? What is going on, what has happened?' But then as you become more rational and you start to think about the real reasons why and I was fine after that. And - as I say [my husband] was rather upset, had a little cry and I just tried to reassure him. And about half past six the surgical registrar came back and introduced herself to me, and said, 'Would you like some good news?' And he said, 'Yes, [laughs] that would be nice'. And she held the xray film up to the window and said, 'This is your xray. I would be happy with that sort of xray after you had had the procedure, let alone beforehand. So we don't need to do the operation and you can go home'. Which was wonderful.

The time lag between coming out of critical care and going down to [the second hospital] had allowed his body to mend. So lots of fluid had been reabsorbed. And the problem had resolved itself. So this waiting for a bed had actually been very advantageous really. [My husband] couldn't come home with me that night. He had to stay in overnight while they sorted out his discharge papers, sorted out his meds, got the physio to check that he could actually come up and down the stairs and this sort of thing, which he could. And I got back down to [the second hospital] about 3 o'clock and he had been hanging around all morning. They had changed his bed and got him out of the bed. Didn't let him get back into bed but put a clean sheet over the top so he could lie on that so the bed was ready for the next patient. I arrived as his meds came up from pharmacy and the nurses were finishing the letters, so they changed his dressing on a wound site which he'd had a second minor op on just to drain [a collection of pus] and within half an hour we were on our way home. Which was lovely.

One man said that his father remained on the ward despite making good, steady progress. Doctors hadn't yet known exactly when he would be well enough to go home because they were waiting until he was strong enough to perform another operation.

His father was likely to stay in hospital for quite some time and would only be discharged after having a further bowel operation.

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Age at interview: 28

Sex: Male

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It's been quite a long time. And I mean to be fair they did say it might be a long time. So they did say that. But I didn't expect, to be honest, it to be this long. But however I mean on that ward there are people who've been in there for six, eight months. So maybe it's just one of those things that people do stay that long. But, yes, that was the main concern really, you know, 'How come he's not getting better?' But no, there are signs of him getting better. I mean they need to operate again on him, to open his bowels up again. But they said that that's not as big as the first one. So they're just going to wait until he gets a bit stronger for that.

So when he gets stronger, then - ?

Yes. Because that's quite important to do that. I mean they say it's only a little thing really.

And did they say anything about how long it could take to recover when he comes home?

I don't think we've got to that stage yet. I think that's a sign of it being a long way away.

We don't know. Probably I don't expect it to be within the next month. But we'll see after that. I think, I can't really say.

Because in this time he'll also has to get stronger and then have another operation?

Yes. And then -

Then, once he's stronger - ?

- recover again, and then come back.

Some people praised the support the patient had been given by physiotherapists, who'd helped the ill person walk using a Zimmer frame, stick or by supporting him or her on both sides. When the patient was strong enough, they were discharged home. Before someone is discharged from hospital, medical staff will have discussed their needs and made a discharge plan. Each hospital follows guidelines and will discharge patients only when doctors feel they are well enough to manage at home with the help of relatives or by themselves. Most people need to be well enough to walk and climb stairs before they can go home. Physiotherapists and other medical staff check and ensure that a patient can do these before discharge.

Rehabilitation
Some people said the ill person stayed on the ward until they could be transferred to a rehabilitation unit either in the same hospital or another one, where they would receive extra care and treatment before going home, including physiotherapy and occupational therapy. Occupational therapists (OTs) help people improve their ability to perform tasks in their daily living or working environments. This includes helping people to dress themselves, cook and eat.

Her son walked for the first time since his accident when he was in a rehabilitation unit and she...

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Her son walked for the first time since his accident when he was in a rehabilitation unit and she...

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Age at interview: 58

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My son was met by many people, including a physiotherapist who basically said because my son, by that time he was standing all right, so she said, 'Right', she said, 'We're going to take you down the hall'. And he stood up and with her on one side and her assistant on the other, for the very first time he actually walked since his accident.

And he walked down the hall to the nurses' station and they'd got Christmas decorations and he's quite tall and his head kept bumping the Christmas tinsel as he walked down the hall. But it was the first time he'd actually walked since his accident and that physiotherapist got him back onto his feet and got him walking. She was superb, absolutely superb. She was just what he needed to get him started. And he developed a deep respect for her as well and he is the kind of person who will work very hard to make things happen. So he was also able to do what she said because first of all he needed help to go everywhere and then he just needed one person to help him. And then he was able to walk using the wooden rails that they've got in the corridors.

Their son went to a rehabilitation unit during the day and came home in the evenings, and they...

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Age at interview: 51

Sex: Male

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Mother' They came and did an inspection. The psychologist and the occupational therapist came and did an inspection of the premises and judged that he would be okay. But no, they weren't coming to the house. And I don't really think, I don't see what they could have done.

Father' I think it would just be so dependent on the case in question.

Mother' I was a little nervous I suppose of having him home. You know, supposing he wasn't coping? Supposing he wasn't well? But the rehabilitation centre had made it quite clear that they would have a bed the following week. If we weren't coping, they could take him. But I mean he just slotted straight back in. It was, it was brilliant. So, no, they weren't coming to the house. I think they would have if we'd needed to.

Father' I think it would be different if there'd have been a higher level of nursing care required. Then the pressures on us would have been much higher.

Mother' Well, then he would have been residential in the care home, and that would have been appropriate.

He then went into intensive rehabilitation in November, and he came on by leaps and bounds. The only problem with that area was that they didn't have a speech therapist, and speech therapy was what he needed more than almost anything else. Physio was very important and he got a lot of his coordination back during that period. And he also gained weight and built up his muscles, after the wasting away in ITU. But speech therapy was quite an issue, and we did as much as we could. And to be honest the psychology staff there did what they could to provide some level of speech therapy, by talking to colleagues and work from the Internet and from books. They went through stuff with him. And it helped. It did help, but he really did need speech therapy on a formal basis. Which he is now getting. He's transferred to a community unit, which again is an adult head injury unit, which deals mostly with stroke victims or road traffic accident victims. But it's been helpful to him, and he's had a lot of education as well on head injury and the results of that, cognitive impairment and the results of that as well.

One man said his wife needed so much care on the ward, he talked to several doctors and they'd agreed to transfer her to a rehabilitation unit, where she would have the support she needed to become mobile again. She also needed a lot of help with her personal care because she'd had many serious bowel problems.

His wife needed a lot of support and, in the rehabilitation unit, nurses had time to spend with...

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His wife needed a lot of support and, in the rehabilitation unit, nurses had time to spend with...

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Age at interview: 66

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When I realised that things, she was going backwards, this is where I sort of decided that something drastic had got to happen otherwise she wasn't walking out of the hospital. Because by this time she still couldn't stand up, she still couldn't feed herself and she couldn't move herself around the bed. Wherever she was in the bed, that was it. If the bag leaked during the night it was just more or less left like that until the next morning. So I sort of did a little bit of shouting and moaning and groaning and eventually it was decided that they would try and find her a place on the rehabilitation unit.

Eventually they found a place and she was transferred down to this unit. The differences between the two wards were one had time to spend with patients and the other didn't have time to spend with the patients. And this is what we found on these general wards, the surgical wards, medical wards, staff just hadn't got time to spend time with the patient. And those that had got the time are not qualified to cope with the situation. And all you get from them is 'that is not my job, you will have to wait for the nurses to come'. And we were waiting forever for a nurse to come sometimes. But on the rehabilitation unit straight away physiotherapy got involved with her, got her back onto her feet from there she progressed quite well with a Zimmer frame. And then walking sticks and then sort of twenty weeks later she came home. Still very, very weak but I think she was glad to come home any how out of the hospital.

I think the thing is on the rehabilitation side they are there more to try and get people on their feet and walking. And really none of them had been particularly trained up in dealing with the medical, surgical problem. And the stoma nurse wasn't available to come down every time it needed doing, although she came down about every other day, she wasn't available on call all the time for that. But again there two or three nurses there who were interested in trying to help and when you sort of said, 'Do you know how to do it?' 'No, I have never been shown how to do it'. And I would turn round and let them stay on while I was doing it, and explain why I was doing it and the pros and cons of it. And then they were quite happy to go ahead and try themselves. So eventually you know we sorted some of the problems out. But it wasn't all the nurses. If you lost again the nurses that were helpful, you were sort of open to the elements of disaster.

One woman said her brother was still attending a rehabilitation unit during the day. He had been there for several months and had been making steady progress.

Her brother made huge progress at the rehabilitation unit and is now independent enough to live...

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Age at interview: 52

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They started to get him used to going home at night because they would do all this treatment in the day in the rehabilitation. It was non-stop, a full, in the gym getting his body strength back, walking, arm movements because the right side was extremely weak, albeit that it's all come back now. It was slow but it's all back but they are working on the weaker side. And then in the afternoon he has speech therapy and occupational therapy, and memory control tasks, so the whole day is extremely busy. But at night then, of course it was, you've just got to go to bed, go to your room, try and relax, and he couldn't do that. He just, you know, would get agitated and angry and aggressive again. He wanted to go home, 'I don't need to be here, I want to go home. It's, not helping me recover. I'm going out of my mind lying on my bed'.

So they, initially somebody had to be with him all the time, somebody had to stay in the house and sleep there and get him up in the morning and take him back to the hospital. Then the hospital, their staff actually met him, would meet him in the morning and walk behind him to walk to the rehabilitation hospital which luckily isn't far from his home. They would follow him and make sure that he was safe to walk back to the hospital and again at night they would follow him home and make sure that he was capable of walking home on his own. And that's where we are at the minute.

Now he is allowed to, they suggested that we start to let him sleep on his own and get up on his own and start to live independently which is what he does, and his daughter as always stays with him at the weekends. So that's where we are at the moment and he still has to go to the rehabilitation hospital every day for, he [laughs] writes but he just writes all the wrong words [laughs] and he'll talk about going down the garden to his Fred, his garden shed, to get his tools and things like that. So he's doing extremely well and the doctors have all said, 'Gosh he's a walking miracle'. Because certainly his scans and if you see his head, the scans isn't it? Oh the bruising is horrendous, the bruising is horrendous, that yeah we are shocked that he is doing so well. So that's where we are today [laughs].

Last reviewed August 2018.