A-Z

Intensive care: Experiences of family & friends

Supporting and caring for the ill person at home

Having a relative, partner or close friend in an intensive care unit (ICU) has a huge impact not only on patients, who may be unconscious or sedated at the time, but also on their relatives, whose lives may suddenly be turned upside down as they wait by the patient's bedside, not knowing whether they will live or die. Generally patients who stay in ICU the longest are those who are admitted as emergencies. 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. Many patients leave hospital very physically weak and complete recovery can sometimes take up to two years, particularly if they were admitted to ICU because of an emergency illness, surgical complication or accident.

Here people talk about supporting and caring for a relative, partner or close friend at home when they'd been discharged from hospital after being in ICU. Patients came back home at different stages of recovery. Some still found it difficult to walk. Others were able to walk with the help of a stick, Zimmer frame or wheelchair. Many were still very weak. The experiences of relatives and close friends ranged from those who provided a lot of support to the ill person at the beginning but soon resumed their normal lives, to those who became full time carers because the ill person's health had deteriorated so much after critical illness that they couldn't manage on their own. 

It had been a huge relief and joy when the patient had survived and recovered enough to be discharged from ICU to a ward and then back home. For many people the most difficult time - not knowing whether the patient would live or die or be brain damaged, disabled or paralysed if they did - was now over. But for the patient, in many ways the most difficult time had only just begun - having no memory or only delusional memories of what might have happened yet being very weak, immobile and almost completely dependent on others [see our section Intensive care: Patients' experiences].

 

She was glad to have her partner back home but he had just begun to realise how weak and...

She was glad to have her partner back home but he had just begun to realise how weak and...

Age at interview: 24
Sex: Female
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Once he'd come round I just felt more at ease because he was just that bit better. He was classed as stable and we weren't being told, 'Twenty minutes' or, 'He might not survive the night' or something like that. So I felt more relieved then. But that's when he started being more stressed and worried because he could see what was going on. And so I think the roles swapped really. And I was more calm and pleased that he was okay, and he was, 'What's wrong? Am I ill?' So, yes, the roles had swapped, which was harder. Because I tried to explain to him, but you didn't want to scare him because it was in the past. It was quite, but, no, I was just relieved when he was awake.

When he was discharged he had like a walking frame, like a Zimmer frame. So he could take himself to the toilet and things. Which was another main thing he didn't like. He wanted to be, once he was awake, he wanted to be independent and not have people do things for him. But he couldn't. But once he had the frame he was a bit, he could go for a little wander down the ward or something. And then when he came home, he could just wander downstairs. And he actually slept downstairs. We had a bed in the conservatory. And then as he got his strength up he just went up and down the stairs with home physio.

Making steady progress and a good recovery

Many people said that, when the ill person first came back home, they'd been extremely weak but had made steady progress and had gradually been able to walk up and down the stairs or go in and out of the bath easily. Some said the ill person had been quite mobile and able to look after themselves but became tired easily. 

One woman said her sister had lived on her own before her illness and had moved back to her own home. Although she'd been very weak, she'd been determined to become independent again and, doing her shopping on the internet and taking taxis to and from the hospital, she had succeeded. Some said the ill person had made small improvements every day and had gradually been able to do more and more for themselves, needing increasingly less support. A few explained that the ill person was still recovering, others that this was the case because he or she had only recently been discharged from hospital. One woman said her daughter was still very weak and she visited her and her son-in-law, who lived some distance away, at the weekends to help and support them. She praised the support they'd received from friends, who'd helped with cooking and shopping.

 

Her sister is now much better, more independent and has spent a lot of time visiting friends...

Her sister is now much better, more independent and has spent a lot of time visiting friends...

Age at interview: 34
Sex: Female
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She moved back to her own home? 

Yes, yes, her own home. I mean we thought she'd probably have to move back with one of the family for a while. But she was very independent. Wanted to be sort of back at home. And she did manage with online shopping and things like that. 

Did she have any carers coming to help at all? 

Well, she had, she did have to get to physio still, so she just kind of got taxis and things. But I can't remember if she had anyone, I don't think she did have anyone come to visit. Because by that point she was able to sort of look after herself reasonably well. And she had a friend who lived just down the road who came round almost every day. 

Now how long ago was all of this? 

It was, it started at the end of March in 2005. So it was just about a year and a half ago, or just under. 

And how is she now? 

Well, she's very well now. She's not gone back to work yet and she still has not the energy levels of her, you know, of when she was well. But in terms of her paralysis, she was very lucky in that that was completely, completely gone. But I know she did have very sensitive feet and hands for quite a long while. And she still has physio because, and she's been very good about doing all her exercises. And I think that's why she's got better so quickly. But I think at the moment she's undergoing some occupational therapy in terms of whether, when she'll go back to work and whether she'll be able to go back to work for, you know, just a couple of hours a week or a few hours a week. But, yes, she's been driving for quite a while. She's been travelling around all over the place visiting friends in different parts of the country. And so, yes, she's much, much better. 

Some people recalled having visits from occupational therapists, who assessed the ill person's needs and took steps so that rails or bath aids could be provided to help with mobility. Others praised the support they'd received from district nurses, who visited the ill person at home and changed dressings when he or she had surgery. Some said the ill person had made good progress because of the support given by physiotherapists. Several said both they and the ill person had benefited from attending ICU follow-up clinics. The aims of ICU follow-up include providing support and guidance for those patients who have had an extended stay in intensive care, often over two weeks. Medical, nursing and psychological support may be offered for up to a year after hospital discharge where appropriate. In the UK, there is no uniform ICU follow-up service and each hospital decides whether to have a follow-up clinic and how to run it, depending on time and resources. Many ICUs don't have follow-up clinics at all and, at present, these clinics are a relatively new, though growing, service.

 

At his follow-up appointment, her husband was shown around the ICU and his questions were...

At his follow-up appointment, her husband was shown around the ICU and his questions were...

Age at interview: 37
Sex: Female
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The hospital my husband was in were superb. They were there. They do, the Intensive Care do a follow up clinic. They rang, they gave me numbers that I can ring at any time, because he was in there for so long and apparently it is very common when you are in this ' I think he was in there for thirteen days, but it is very common for there to be problems. They arranged, because my husband had no memory of being in there, they arranged for us to go, and for him to actually see intensive care and explain the machinery and what had happened and things like that. So no I don't think so. We are quite self-sufficient people. Now whether that had any effect, but I can't see that anybody could have done anything more for us. 

And when you had the numbers that you could ring, was that when you left the hospital? 

Yes. 

So you could ring, even if you were at home and you had questions? 

Yes. It was at home they contacted. 

And how long after your husband came home was the follow-up appointment? 

I don't know. 

That is okay. And did you find the follow up appointment helpful for you in any way? Or was it mainly for your husband? 

No. It was very helpful because things he was bringing up, they are going 'no that is normal, a lot of people do that, a lot of people do that', which obviously with never having anything to do with intensive care, you don't know. And I know after the first meeting, my husband said, 'Well I am not mad, that nothing I did was out of the ordinary or strange of bizarre', which was very important. And it helped me because I also knew that was okay, that was normal, that people do behave like that. 

Many were surprised at the length of time it had taken the ill person to recover and get back to normal, including going back to work. Some had taken a year, others two years. Some still hadn't returned to work. Others had a 'phased return', working a few hours a week to begin with, with the aim of becoming full-time again. How long someone takes to recover after critical illness depends on many things, including their age, previous health, how ill they were in ICU and how long they stayed there. Most said the ill person had been completely unprepared for the time it took to regain strength and mobility when they left ICU.

Having little or no memory of their intensive care experience can also affect expectations of recovery time because people may not realise how ill they had been 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. 

As well as supporting the patient with their physical needs, many said they'd also had to support them emotionally and help fill in gaps from the time they'd 'lost'. The ill person had often asked lots of questions about the time they'd been sedated or unconscious becuase they had no memory of it. 

 

His partner regained physical strength quite quickly and is back to work but still asks questions...

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His partner regained physical strength quite quickly and is back to work but still asks questions...

Age at interview: 35
Sex: Male
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The hardest problem is that we're in a flat where she had to get fit for the stairs. And it took her about a week to get her fitness levels up so she could easily go, not easily, but comfortably go up sort of sixty steps. Then came back here. And, you know, I took about a week off as sort of proper holiday and spent time just with her and just on our own trying to get things back together and support her really. 

Was there anybody else here? 

No. I looked after her for the first sort of week and a bit. Then my mother, my mum came and looked after her for a week. And she made a fairly rapid recovery really. I mean she got her fitness back quite well. I mean she was walking quite well and managing to sort of do more and more on her own over a period of time. It's sort of now really, where she's at another level and she's struggling again. Because it's like anything really that you try to do. You pick it up quite quickly at first, but then to sort of refine it and move it forward it takes you longer. 

Is she back to work full-time? 

No. Yes, pretty much back to full-time. I mean we work together. So I mean she's probably doing a good four-day week now. But she's exhausted. I'd say she's pretty much back to full-time. I think within a couple of weeks she'll be full-time. But we have quite a long commute in and out of town. So that adds potentially three hours to the day. So if we didn't have that, she would be full-time I think. 

I mean in some ways it's like whilst [my partner] was in Intensive Care it was more traumatic for me and her parents than after. Because when [my partner], she was asleep, she didn't know what was happening, whereas we did. Whereas now she's got to rebuild everything. I mean when she came out of or was woken, she couldn't sit up, she couldn't walk, she couldn't stand up, she couldn't do anything on her own. 

Was she having hallucinations? 

Yes, she had some pretty good hallucinations as well. Which we remind her about quite often. But it's harder for her now I think than it is for us. So sort of my life is getting back to normal quicker than [my partner's]. Because I've got my normal life back now. I've got my girlfriend back and she's living with me, we're building our house and doing all those things. Whereas she's sitting there thinking, 'God, I'm tired and shattered after two hours at a computer screen. And I can't run, I can't walk, we can't do sport' those kind of things. I guess she's about 80 per cent there really. And I mean mentally she's back to the way she was. I mean she's still got lots of questions and anxieties I guess.

Some people said that the ill person had improved and regained their physical strength and independence in time. One woman said that, as her husband became stronger physically, they felt comfortable enough to have sex again. Following a critical illness, it is safe to have sex again when the ill person feels strong enough, and this varies according to individual circumstances. There are no specific restrictions or time scales but, if there has been an underlying problem, such as heart problems, it is worth checking with the GP or nurse specialist first.

 

At first she was worried about hurting her partner because of his surgery but, in time, they felt...

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At first she was worried about hurting her partner because of his surgery but, in time, they felt...

Age at interview: 33
Sex: Female
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I think when my partner first came home, sort of he was still too sort of weak and things like that. But as he got stronger and, I don't know, you felt that you wanted to be close to him, but then you didn't want to hurt him and worry and touch where he'd had his operations and things like that. And I think it still, even now, you still feel that you need to protect him or you don't want to hurt him or just lean on him or give him a cuddle and things like that. But I think it was a few months when he got home that we just started getting that bit closer and things like that. And sort of he felt ready and we had the discussions. Because we'd just had a young baby as well, it was all still a bit difficult after then. But I felt more that I didn't want to hurt him or things like that. Whereas he just wanted us to be back to normal. And he was like, and he knew that when he felt ready and what he could and couldn't do. But I think it was harder for me because I didn't want to hurt him or do anything. But he was like, 'No, I'm ready' and things like that. 

And I think that's the main thing in a relationship is to get back to normal, because I think it is quite a big thing. And you feel so distant from them, from not seeing them. I think even just to talk about it is better than nothing really. It was, that's one thing I found, or just even talking and having a cuddle, you felt you didn't want to. But afterwards it's, so, yes, I'd definitely say, 'Talk about it'. 

And did things go back to normal? Or it took time? 

It took time definitely. Just because my partner, you have up-and-down feelings and some days you feel depressed and sometimes he would feel that he wanted to do things or he was ready. And then other days I wouldn't feel, but that's when you explain rather than giving them the cold shoulder and then people think like, 'Why's he in a mood?' or something. The main thing is discussing it, and then you realise. And it soon got back to normal and things. 

Some people said that the ill person's health was now better than it had been before the illness or accident. 

 

His father is a different person now and looks as healthy as he did 18 months ago when he was...

His father is a different person now and looks as healthy as he did 18 months ago when he was...

Age at interview: 52
Sex: Male
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If you had seen my Dad before he went in, he hadn't had good health all year, he looked awful, dreadful. And now, for an 80 year old, whatever happened on that 48 hour period leading up, whatever caused it, we know now what it was, it has all been flushed away and he is more active, better colour, he is walking, still cranky. But he is the Dad that I knew a year or eighteen months before when he had had a medical from the doctor who said you have the heart of a 50 year old. So it was just a bit odd that you could go in to Intensive Care and be on life support and told that your Dad might die, and you are thinking 'is he going to come out of here. I don't think he will come out of here'. That is what some people were saying. To three weeks later you wouldn't have believed he had been in Intensive Care. Yes, a little bit weak on his legs but that soon came back, out and about walking. And like I say he is just a different man. 

At the end of the day my Dad has come out of Intensive Care as a different man, he really is a different man. I told him. 

How is he different? 

He just looks better, he just looks better, and he is more mobile than what he was before. All he wanted to do was just nap and sleep all day. We tried to get him to change his sleep patterns and stay up a little bit longer and in the first few weeks after he was asleep from something like eight o'clock through to six the next morning. My day doesn't do that. You know he worked for decades down the coalmine and there they have four or five hours and regularly get up at 3 o'clock in the morning. But he has drifted a little bit into that sort of sleep pattern but if that is the price to pay for looking as well as he does then I am happy. I am happy with that. But he does, he looks tremendous, he really does.

Supporting someone who has had head or brain injuries
If the ill person had had severe head or brain injuries some described how they'd had to recover both physically and mentally. One woman said her husband, who had serious head injuries after an accident, had discharged himself from the general ward because he'd become so depressed. He was extremely weak when he got back home and she'd had to help him get in and out of bed, shower and walk. 

 

Shortly after taking her husband home, he received physiotherapy and occupational therapy, and...

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Shortly after taking her husband home, he received physiotherapy and occupational therapy, and...

Age at interview: 39
Sex: Female
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So we were coming back in the car, and had no preparations or anything at home to look after him. So I left him in the car and I arranged for chairs to be put along the hall, so that he could sit down for a little while and then take a few more steps still with the walking frame. And it must have been after a couple of hours I finally managed to get him up the stairs and into bed, where he stayed for a couple of days, just recovering after all the exertion. And so he went on to recovery at home after the sixth week. 

I got a call from the physiotherapy department at the hospital. I did feel rather ashamed of what I'd helped him to do, but I think, even looking back now, it was probably the right thing to do for his mental state but not for his physical needs. They were very helpful and they arranged for a priority appointment for the community occupational therapy unit to come and visit us at home and assess what sort of needs he would have. He'd been wearing the brace that had been supplied at the end of his bed. But we discovered that it was the wrong one that had been supplied. It should have been a lot more robust one that kept his spine straight for the whole time he was out of bed. So the occupational therapist picked that up from the hospital and came and fit it on him. 

I'd normally get up early. I was sleeping in this room and [my husband] would be in the other room to give him plenty of room to move around. I just let him wake up when he was ready, and we'd get the spinal brace on and in the shower, then back into bed. Because everything would exhaust him a lot. Then we'd have breakfast. The whole day was just spent with everyday things that for most people would just take an hour or so. 

With recovery from brain or head injuries, family had also had to deal with the ill person's mood swings and, sometimes, anger and frustration as well (see 'Emotional impact on family and friends'). 

 

When her husband first came back home he had a lot of mood swings and she worried that these...

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When her husband first came back home he had a lot of mood swings and she worried that these...

Age at interview: 39
Sex: Female
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And you came home. So how was it when you came home, for you? Because physically you needed to be there all the time? Yes. 

And also his needs, how did you cope with all of that? 

I don't really know [laughs]. There was just really no choice to it. I just had to get through each day I suppose. There were times when I thought, 'Oh, is it going to be like this for ever?' kind of thing. In the early stages he would be very difficult for most of the day. But as he gradually began to improve, then it would be more changeable. 

And is it at this point you would have found having someone to speak to, maybe outside the family or someone from the hospital helpful? 

Yes, I think perhaps away from the hospital. Just somewhere that you felt that you could talk confidentially and that wouldn't go on his medical record or be repeated to my husband. 

What were your main concerns at this time? 

Just to have reassurance that this kind of thing was normal for head injuries. Having not experienced anything like that before, I didn't know whether it was the head injury or whether he'd be permanently like that. Just reassurance that things would get better I guess. I think further down the line, because of the head injury, it would have been really useful to speak to somebody. Because I was a bit reluctant as well to tell people about his depression thinking he may be put in a psychiatric ward or something. 

Some people who'd had head or brain injuries had very poor memories and concentration and may have been confused. Several needed a lot of care and support before coming home and had been transferred from a hospital ward to a rehabilitation unit. Back home again, a few had made what relatives had called a 'miraculous' recovery. 

 

Although their son had to have some minor surgery and is still making progress, he has made a...

Although their son had to have some minor surgery and is still making progress, he has made a...

Age at interview: 51
Sex: Male
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Mother' It's wonderful to say that in fact he's so very much himself now. Some of our friends find it actually quite difficult to believe that he's had any problems. And he himself regards himself as better now. We can see that there are still a few little, actually very minor things. He suffers from word blindness, in that he will say, 'It's on the tip of my tongue'. Which we all have to a greater or lesser extent. But it's quite frustrating for him. And he says that he repeats things. But we haven't noticed that. We're not particularly aware of that -

Father' No. 

Mother' But his own assessment of himself is very interesting. And they come back with a psychological assessment of him every six months to show how he's progressing. They say that he's thinking a bit slowly. 

Father' But he doesn't feel that that's the case. He feels that he's thinking okay, but it's just expressing himself that's the...

Mother' Yes, absolutely. And they say he's hopeless at maths. But he always was. 

Father' He always was. The one difficulty that he suffered from being in Intensive Care specifically was that he was catheterised for a very long time. 

Mother' Yes. 

Father' And this has caused, well, for quite a long time it caused quite a difficult urinary tract issue, in that he couldn't empty his bladder properly. So -

Mother' He had a stricture. 

Father' So he was needing to go to the toilet every half-hour. 

Mother' Half an hour. 

Father' Which made car journeys more than difficult. Subsequently he's had a minor operation to have that sorted. And that seems to be working very well at this time. So he's pretty much back to how he was. He visits friends. Obviously someone has to take him and pick him up at the moment, but...

Mother' Well, the friends are quite good at ferrying him about as well. 

Father' He's been to parties, he's going to weekends away. We're going to a big folk music festival in a few weeks' time, where he'll be, which is where he was just before the illness last year. So all in all he's -

Mother' He's made a remarkable recovery.

Father' A miraculous recovery. Allowing for the fact they said to us, 'He's going to be a vegetable for the rest of his life'. 

Mother' Yes. And I must say that there was at least one nurse, if not two or three, on ITU who said, 'Look, don't look on the black side. Try and stay positive. We have seen things that are nothing short of miracles'. And you cling to that. You really do. 

 

Her son is now driving again and she is looking forward to the time he will be completely...

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Her son is now driving again and she is looking forward to the time he will be completely...

Age at interview: 58
Sex: Female
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I don't envisage that I will always be at this stage. I mean he's so much more independent now, in his thoughts, feelings, you know, driving. It's all coming back together. And really I hope to get to the same stage I was at' it's kind of like accompanying somebody' when you have a child, you accompany them through their childhood and when something like this happens it's like going back to square one and doing it all again. 

So I think that I'm looking forward to the stage and I know that it is happening because I can see that it's happening, where he will be independent again and that is the ultimate goal. And I don't envisage that he will need me. And that will be tremendous when that happens. And so, you know, we've been utterly blessed, utterly blessed, with the way things have happened because he was very severely injured right at the beginning. And he has really come through this in a miraculous way. 

One woman said that, after having a serious accident, her husband had made a good physical and mental recovery over three years. However, he'd lost some sensation in the lower part of his body and this has affected their sex life. 

 

Because of her husband's injuries, sex is no longer such an important part of their relationship...

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Because of her husband's injuries, sex is no longer such an important part of their relationship...

Age at interview: 39
Sex: Female
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In the third year, this year, my husband was beginning to, continued to make a really good recovery and is able to do most of what he did prior to the accident. Although he is stiffer and has more discomfort, so he can't walk for very long periods of time. He still has problems with reduced sensation in his legs and lower half of his body. And our sex life has been affected as well. But we have a closer relationship with each other now. So that aspect of our life is less important. For a few months afterwards it was quite difficult. But I think it's like anything really. You gradually adapt to things, and you get used to a way of life. You're thankful for the good outcomes of things, and grateful to have him alive. And even with his parents, I've noticed that when he speaks to them he'll say, 'I love you' more perhaps not have said that before. It was just understood that he did. I think we just have a better understanding. Obviously we still have our ups and down, as we did before, but we tend not to sulk about things as long and that kind of thing. 

Making good progress but not a complete recovery
Some people said that, when the ill person had first come back home, they needed a lot of support because they'd still been unable to walk very well, lift things, cook, clean or get into the bath or shower alone. Many, at first, became tired very easily and small, normal, daily activities had been extremely difficult. Some people had to move the bed downstairs so the ill person wouldn't have to climb the stairs because this one activity would leave them exhausted for the rest of the day. A few people said that, as the ill person became stronger, they would go up and down the stairs on their bottoms until they were strong enough to walk. One man explained that, when his wife first came home, she could do very little for herself and their daughter gave up college to care for her full-time. For many, progress had been slow and steady, and there'd been many good as well as bad days. It had taken the ill person several months before they'd become strong enough to walk up and down the stairs and up to two years before they'd become completely independent again.

 

He and his daughter looked after his wife when she was discharged from hospital, and she'd needed...

He and his daughter looked after his wife when she was discharged from hospital, and she'd needed...

Age at interview: 57
Sex: Male
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My daughter was the main carer. She looked after her. All her physical needs because she had to be washed. She couldn't, to get out of bed she had to have all this brace put on. And my daughter did that. I did as much as I could. 

Was your daughter also doing the cooking and? 

No we were doing it between us basically. I learnt how to cook [laughs]....

She was, she was constantly sick. She was lying down and, and if she wanted to get up to be sick we had to put the brace on first before she could get up. So it all had to be done rather quickly. 

Yeah. And how long was it before your wife could get out of the bed and slowly walk? 

I think it. It was about two months wasn't it? End of April yeah. Thought it was. Yeah it was about two months before she was able to get out and walk around, albeit very slowly. But she did manage a few steps. And of course, as time went on she slowly, she started to get a bit stronger. There was one instance, one night we were all sat here watching the television. She got out of bed [pause] and she was going up the steps. And we said, what are you doing? 'I'm exercising.' [Laughs]. And she shouldn't have been. 

And did you have any stair rails or anything to help? 

No. No. Only that rail that's on the stairs now. 

Many recalled how, gradually, the ill person became stronger and more mobile but often, even one or two years after critical illness, still got tired more easily than before the illness. Some had become independent again but hadn't got back to their previous level of health. One man said his wife had had a lot of back problems since her accident. Another said his wife now had diabetes and had to completely change her diet. She was regaining strength and independence since having surgery to remove a kidney but she still wasn't back to normal. They'd started having sex again but now had to be much more careful because the scar left by her surgery was still healing and sometimes caused her pain. 

Some people said that their loved one still had good and bad days even though they'd made good progress for up to two or even three years after being in ICU. In some cases, the ill person was quite elderly and it was felt that their health probably wouldn't improve much more than it had. But they had still made a good recovery because he or she was independent again.

 

Her mother has made a good recovery but still has good and bad days.

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Her mother has made a good recovery but still has good and bad days.

Age at interview: 37
Sex: Female
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I would check her in morning and I would phone her during the day and then I would come home and go straight round to make sure everything was all right. I was doing all the cooking. But I knew, she was so determined, I knew, I had to help her with the bath and actually that is one of the things that determined how better she was getting. At first she couldn't even get in and out the bath herself, and I was having to bath her and wash her hair. And then gradually she would phone me, 'I am getting in the bath, if I haven't phoned you in fifteen minutes, come round and check on me'. And that gradually petered out as well. So she just now gets on with her life but that was an indication of how she was improving and getting better. Going up the stairs to start with, she would have to go up and down on her bottom. She couldn't walk up and down stairs and then gradually she progressed.

But eventually she progressed. 

She got herself a dog in May of 2004. So she then had to go out with him, rather than just sitting at home feeling sorry for herself. She takes him out three times a day. And just gradually, it is now coming up just past her third anniversary, and she is really back to normally as much as she possibly can be. She is cooking. She does the shopping. She is driving. She takes the dog out. She goes to keep fit. She goes swimming. So really is back to normal as much as possible. 

Thank you very much, is there anything you want to add? 

She is grumpy [laughs]. She has turned into a grumpy old woman because she can't do, she gets frustrated she can't do everything that she wants. But she has also still got a sense of humour and we do have a good time. She has down days. In the early days she felt like she was taking one step forward, two steps back and that really frustrated her and she was very, very down. And she still has them. She has her off days where she is really tired and she gets very frustrated but then other days are really good now. So' it does take time but eventually you have more good days then bad days I think. 
 

One woman said she'd become the registered carer of her best friend. At first she'd needed lot of physical and practical support but, over the years, the support had become more psychological and emotional.

 

Her friend needed a lot of help at first and, five years on, is still weaker than before and gets...

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Her friend needed a lot of help at first and, five years on, is still weaker than before and gets...

Age at interview: 37
Sex: Female
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I was there every day. I did all the housework, her shopping, her washing, her cooking. I'd take meals down to her that I'd cooked at home most nights and if I didn't do that I would go, I would prepare something for her in her house. She didn't have the strength to lift the pan up to cook for herself. She was having problems with her left hand strength-wise and dexterity-wise. She'd drop cups, she dropped the kettle. So she wasn't safe really. 

She's still so short-tempered now it's unbelievable. She gets angry with everybody and if it's not angry it's upset. She cries at the drop of a hat. She doesn't get dressed most days. In fact the only days you can guarantee to see her dressed is on a Wednesday when we go shopping or if she's going to hospital for an appointment. I confiscated her pyjamas on more than one occasion. She's actually moved now to a ground floor flat with a walk-in shower. She sees the physio once a month. She's still under the care of a bowel surgeon, bladder surgeon, plastic surgeon, neurologist, psychologist. 

And how long is this now after, since she was admitted? 

Five years. 

But she still gets quite depressed? 

Very, yeah. She's actually attempted to overdose on her anti-depressants. So she's no longer taking anti-depressants but she sees, I don't even know what [nurses' name] title is. She sees her for counselling at the hospital where she was in intensive care, once a fortnight. She's not very happy at the moment because she should move to this flat which has meant that the GP, her local GP who's been her GP for 17 years can no longer see her even though she's still living on the same estate as she was before she moved. But the GPs have tightened their restrictions on patients and will only see patients in their immediate vicinity. So she's had to change GPs. 
 

After coming back home, some people had needed to go back into hospital for surgery because they'd encountered problems. One woman explained that her husband had needed an operation on his spine and, although he had to be in hospital for four weeks for this, he had recovered quite quickly compared to his recovery after ICU. One man said his wife, who'd had bowel cancer, had needed chemotherapy shortly after coming back from hospital and often felt exhausted afterwards. One woman said her husband had to be re-admitted to hospital because he'd had several problems with his medication. Although he still gets more tired than before, he is now back at work. 

Some felt that there'd been a lack of support once the ill person was back home and that he or she would have made a better, easier and quicker recovery had there been more support, such as physiotherapy and regular monitoring by doctors. Others felt the patient should have spent more time in hospital, where they would have received the care and help they'd needed from medically trained people. Several felt they'd 'muddled through' but were unsure if the care and support they'd been giving the ill person had been right (see 'Support and information'). 

 

He felt that his partner's mother should have stayed longer in hospital to gain more strength and...

He felt that his partner's mother should have stayed longer in hospital to gain more strength and...

Age at interview: 38
Sex: Male
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And then the news was that she was coming home, you know. Which amazed me, because she couldn't stand up, she couldn't sit up. And, you know, all the time I just kept, I tried to grin and bear it for the family. Because I am very loud and I do get my point across. But the more fuss I make, the more it will upset other people. So I bit my lip in a sense. But I just thought to myself, 'How can she come home? She can't do anything for herself. How can she come home?' A bed was delivered, I don't know where it came from, but a hospital bed was delivered and a commode and stuff like that. Which I knew [my partner's mother] wouldn't like. She's a very proud woman. So we set it all up in the conservatory, and she came home. Still in my head it was, 'How can she be home? How are we going to care for her? We're not doctors, we're not nurses. You know, no one's really explained a lot what we're meant to do, how we're meant to do it.' 

I mean I think the doctor said to [my partner's mother], I remember it in conversation, you know, 'Go home and get better.' Well, just to say that to somebody, it's nice after the accident she had, but someone that can still barely, she couldn't barely move without support or anything, you know, I felt that she should still be in hospital. Because they just seemed to ship her in, ship her out. You know, 'She can breathe, so she can go home.' 

[My partner's] done 90 per cent of the looking after of [my partner's mother]. It was horrible to see her struggle to do anything. And she hated it herself. [My partner's mother] absolutely hated it. I think at times she didn't want to be how she was. I think I know that her worst bits, her worst time was when she was home, you know, and she'd get really upset and depressed and everything. You know, she actually came out with, you know, 'Why didn't I die, you know, I'd be better off dead.' 

And you can imagine what someone's going through. But, you know, that had an effect on everyone here when she was home. I mean you had good days and you had bad days. [My partner] was worn out. And everyone was worn out. And we didn't really know how to look after her, how we should look after her. I mean she didn't get any physio. I think she had a couple of visits, I think it was from the district nurse or something. But, you know, I actually thought you'd have a doctor or a nurse out every day. But you never. 

As time went on she did develop, she did get better. I mean she had to wear this brace just to sit up. And you can imagine, it was all done by mobile phones. You know, you'd be upstairs and [my partner's mother] would wake during the night and she'd need to go to the toilet. So, you know, she had the use of her hands and so she would text [my partner]. And [my partner] would get up and, you know, which was quite comical. But I mean you shouldn't have to do that. She should have still been in hospital or something in my eyes. But, you know, the amount of times you'd hear a text and it would be [my partner's mother] wanting something because she couldn't reach and all that. And then she, you know, she began to move more, very slowly, very slowly, every step. You know, to see her actually stand was amazing. 

Caring for someone full-time

Some people said they'd had to make many changes to the way they lived their lives because the ill person's health had deteriorated so much since the illness or accident that they now needed a lot of care. Several said they'd had to give up work for a few years so they could care full-time for their partners. One man said he'd accepted a redundancy offer at work so that he and his daughter, who'd given up college, could look after his wife. 

A few people had to give up work permanently to become full-time carers. Some had been retired. Many described the changes they'd had to make to their everyday lives and the challenges they'd faced. A few said they'd become quite housebound or rarely had a break themselves because they needed to be near or with the ill person all the time in case he or she injured themselves or caused an accident in the home. It was not uncommon for one such carer to feel that there was no way that they could give themselves a break because no-one else could do their job for them.

 

Her husband improved physically over time but, because his memory is still very poor, she doesn't...

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Her husband improved physically over time but, because his memory is still very poor, she doesn't...

Age at interview: 66
Sex: Female
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After he came home things weren't easy because, I mean [my husband], I just couldn't leave him at all. You know even to get in the bath and I used to have to sit up there with him really to literally, I just could not leave his side. But gradually things improved. By the end of January he was, he didn't always know where he was. He'd begin to realise that this was our home but when he left hospital he said, 'Well', he said, 'The first thing that I've got to do,' he said, 'Is to try to find a job'. And I was saying, '[Husband's name] you've been retired for a number of years'. And, ' No, no I need to get a job'. And then he seemed quite content. 'Oh,' he said, 'That's good,' he said. And then he started saying 'But have we got enough money?' I said, 'We've plenty of money. We've got the same money that we've had before you became ill.' And those things started to concern him a little bit although he just' He still can't really cope with the financial things at all but that bit doesn't matter. But he gradually, gradually improved and then we went on a bit. 

My younger daughter who'd actually gone to Goa for a little bit of the beach bum for [laughs] three or four or five or six months [laughs]. She came back to see him at the end of January and of course she took him for little walks around the streets. She just couldn't believe when she walked down the back lane he said, 'I've never been here before. Where is this? Where are you taking me?' That was about the 26th of January, just about three weeks after he came out of hospital. And then she came back again for a week in March and she just could not believe the improvement he had made in two months. 
 

 

Because of problems with personal care, mobility and eyesight, he cares for his wife full time.

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Because of problems with personal care, mobility and eyesight, he cares for his wife full time.

Age at interview: 66
Sex: Male
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When she came home, she could just about stand. She had just about enough energy to stand and walk a couple of feet and then she would be exhausted. And then we sort of devised a piece of equipment that she could wear at night. Because what was happening was, to start with when she was home we had to, I had to wake her up every two hours to empty the bag. And of course I wasn't getting any sleep because every two hours she had to empty the bag otherwise it would just pop off.

I mean she was building up a lot more than she was. But every so often something will happen somewhere and she will seem to lose a lot of that strength. This morning I found her laying in the conservatory and she had just got up and the next thing was she had collapsed on the floor. This is happening a few times. Now we have been to the doctor and we found out that she has got wax in the ears and we are thinking that this might be causing the loss of balance with her. But now we have got to wait until next week before we can get the nurses appointment to syringe it out. 

And has her co-ordination been coming back slowly? 

The co-ordination is coming back to a degree. But the problem now is the eyesight. The coordination with her hands is coming back, but unfortunately the eyes can't see what the hands are doing. And at first we said, 'Well move your head and have a look through your good eye', but that is not really solving the problem because you have still got the bad eye and it is still counteracting against the good eye, which is incidentally not a good eye, it was a bad eye originally. 
 

Two people said their partners had had to have a leg amputation when they were ill in ICU. Both had given up work to care for their partners full-time. 

A few people said they received support with caring, which they'd found helpful. 

One woman said she had to care a lot more for her son after he'd been in ICU. She'd learnt how to do some physiotherapy and had the support of a carer on weekdays.

 

A carer helps her son during the week and she cares for him the rest of the time, including...

A carer helps her son during the week and she cares for him the rest of the time, including...

Age at interview: 44
Sex: Female
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It knocked him back enormously. Beforehand he was a lot stronger. He's been a lot weaker since having this, he's been left with, his left lung doesn't work particularly well now. He's on oxygen overnight. Which he never had before. Every night. And he has oxygen during the day. He's certainly got worse. When he first came out of hospital he was very, very weak. 

We get, [the carer] comes in school days 7.30 till 8.30 in the morning. Gets him up, gets him dressed. And then she or somebody else will come back at 5 till 7 in the evening. Which, they feed him and bath him and put him into his pyjamas. And one reason we do this is because he's 13 and he still has to wear pads. And so it kind of gives him a bit of privacy. Because being 13, he needs his privacy. And I mean I do change him. I do everything for him. [My husband] doesn't as a matter of principle. You know, I mean if I'm not here, then, and he needs changing, [my husband] will do it. But as a matter of course he doesn't. And that's kind of an unwritten agreement. But he will take forty-five minutes to eat a meal.

Some people said they'd had little or no other support when the ill person came back from hospital and this has meant they rarely got a break from caring. A few felt that the ill person's needs were extremely specific and that no one else would be able to care for them the way they did. Several felt guilty about leaving them with someone else but that they would benefit from a break.

Planned admissions

Although most people admitted to ICU have an unexpected life-threatening condition, some are admitted after planned (or elective) surgery because they need special support and care after a major operation. Planned surgery ICU patients differ from emergency patients in that they know they will spend some time in intensive care after their surgery. Even so, every patient's experience is unique and they may be quite weak after surgery and need support. One woman said her husband had had a kidney transplant and, within a few a months, was well enough to return to work. 

 

After his surgery, her husband is stronger and healthier than he was several years ago and it has...

After his surgery, her husband is stronger and healthier than he was several years ago and it has...

Age at interview: 53
Sex: Female
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He has been back now three months. Very good. Back to work within a month. But I must say he doesn't do a strenuous job. It is a clerical job and he loves his work. And he is not a man to do things around the home so he doesn't really want to be at home. He is much better, much more fit then when he went into hospital and we have taken our life a lot more seriously. We have made sure that we've eaten the best food which has been cooked, because at first you are not allowed to eat out when you are on immuno suppressants. And you have had an operation like this, we had to eat at home and eat the best food. We made the most of our food. He is now able to drink as much fluid as he wants to drink and the quality of our life has been much, much better. 

And we don't have to have separate rooms. There is no dialysis machine and we are able to do things more normally now. And we are planning a holiday, a short haul holiday soon and in six months time my husband, will be able to take long haul flights and will be able to travel further.

Last reviewed August 2018.

Last updated May 2015.

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