Intensive care: Experiences of family & friends
Signs of improvement and progress
For patients in intensive care there may be a period of uncertainty as to whether that person will survive. During this time friends and family will look desperately for signs of improvement. Here relatives, partners and close friends talk about waiting at the patient's bedside for signs of improvement and progress.
Waiting for news and signs of change had been an extremely stressful time in which many people had felt helpless. Gradually, most patients had shown signs of improvement and relatives and close friends had been overjoyed to learn that the patient would survive. Patients remain in ICU for varying lengths of time, depending on the nature of the illness. Some need surgery, others are treated only with drugs. For most of the time the majority of patients are unconscious. This may be because of a head injury or it may be that they have been heavily sedated to get them through a period that would otherwise be distressingly painful. Because they are unconscious they have to be given artificial respiration either by an endo-tracheal tube (a tube inserted into the windpipe from the mouth or nose to provide a passageway for air) or through a tracheostomy (an opening through the neck into the windpipe). If the event that takes patients into ICU is unexpected, they may not be aware of their condition until they regain consciousness (come round). Some may remember pain, others don't, but it is common for patients not to remember what happened. When they come round in ICU they may not know where they are or how ill they've been. This is due to the illness as well as medications (see Intensive care: Patients' experiences).
When the patient had had severe head or brain injuries, some people said that it had been extremely harrowing waiting to find out if these had affected their memory and abilities to do normal daily activities. Many people waiting for the patient to regain consciousness had worried about what the future had held for the ill person and about coping themselves if the person needed full-time care.
Although doctors thought her husband wouldn't be able to do much for himself any more, he...
But we were told that this was just a, that this really wasn't responding, that it was just a reflex, muscular action. But we were just looking and looking and perhaps seeing things that weren't there but just, it was giving us a little bit of hope.
And by Thursday morning they were hopeful that an ICU bed would be available at our local hospital. And the nurse who had spent a lot of time with [my husband] that week, she asked him to put out his tongue and he did and she asked him a second time and he did it. So then they were sure that there was a response there.
So he was transferred to our local hospital and when we got there, the doctor from ICU said, 'Oh he is doing so well. I didn't expect to see him again.' But of course, meanwhile we had been told that he would survive but that his brain function would probably, would be almost nil. That he would be doubly incontinent, that he probably would never feed himself. He'd have to be fed by a tube, that he wouldn't move, that it would be 24-hour nursing care.
And when he came back to our local hospital he actually had a tracheostomy that afternoon because at that stage, because I think he'd been, well he'd been rejecting some of the nutrition he'd had in the other hospital. And I think he was beginning to get problems in his throat from having so many tubes down there. But within a few days he really started to respond a lot more. He'd look and when we said names, you know I would say, 'Oh [daughter's name] is here', who's one of our daughters, or 'Our son is here', he'd actually, and when they'd say 'hello Dad. Yes I'm here', he would actually turn in recognition.
Many people described their concern as the patient began to regain consciousness but seemed to be totally confused and deluded, and in some cases extremely agitated. In most cases where a patient had head or brain injuries, nurses had been able to reassure them that it was usual for people in the early stages of recovery to be agitated, often uncontrollable and very confused.
Doctors tended to be very cautious in their predictions of how much recovery or permanent damage could be expected. It was only some time after patients had regained consciousness that doctors had been able to ascertain, gradually, whether the patient had been left brain damaged or disabled in any way. Sometimes, although a very negative prediction had been made, the patient surprised everyone by making good progress.
One woman explained how anxious she and her daughter had been waiting to find out whether her son-in-law had been brain damaged after a car accident. At this early stage, any sign of awareness or recognition in the patient had been encouraging.
Her son-in-law was extremely confused when he came round, had a poor memory for quite a while...
So that was worrying because he was still confused even though the sedative drugs had worn off. And my daughter was definitely worried that he was going to be permanently impaired but he has improved. And now I think, except I think you'd have to do special testing to find, you know, any deficits, any problems now.
So he's almost back to normal?
Obviously he won't have remembered the accident but, but his memory generally, short - ?
I think so yes. His short term memory was poor in the first couple of weeks. Even a week ago he couldn't remember what he'd had for lunch. He couldn't remember whether he'd had physio that day but all that has, over the last couple of weeks, has gradually improved. And now he's virtually normal but they have said you know that he could continue to improve over several months.
Another woman described how her son had started recovering slowly, after having head injuries and, day by day, been able to do a bit more for himself. Over time, he was able to eat, recognise people, walk and talk.
Every day her son improved in some small way and slowly started regaining weight.
There was another day where a consultant came in and was speaking to him and [my son] has always hated reading and anything like that, and his use of language isn't particularly good. He sort of doesn't use very large words very often. And he started talking in a way that was, I felt well what's he done. It was so eloquent. And he was saying words I'd never heard him use before. And he sort of answered this consultant and I thought, my goodness. And it was as if part of his brain that clicked in, that we'd never ever seen before and we haven't seen since. It's sort of gone again but it was there for that time and that was amazing. So that lasted a day.
The middle son got great pleasure getting him a Macdonald's because they said he needed, he'd lost so much weight. I mean he was absolutely stick thin. This six-foot lad with no, well he must have dropped to between five or six stone. It was frightening. And so he needed to get some solids into him and so MacDonald's was the order of the day, and he loved it. He thoroughly enjoyed that and it pleased the other one completely.
And there was a lot of banter. And one day they sat and one was rolling tissues up and throwing it and the other one was catching And the younger one became the elder brother for a while and he was very, very caring. And I think it made them realise how important they are all to each other. And that they are a whole, the three of them, and if you take one part away, it's huge void.
He was also, while he was in this room, he was allowed to choose what to eat and the food you know, there was lots of choice. And they really wanted him to just enjoy what he was having, so we were able to do that. He would get up and walk and he would lurch everywhere. But there were always people helping him. And he would walk around and everyone was chatting to him and he was very' he's very friendly, very sociable anyway. And that was the other thing, we could see his character coming back. He didn't lose, nothing of that was damaged.
Intensive care patients receive many medicines and some of these and even the illness itself can cause nightmares and auditory or visual hallucinations. Some people had been very worried when the patient had come round but been extremely confused or hallucinating. They'd been concerned about their mental health and whether the hallucinations would be permanent. This period of time could be almost more difficult than when the patient had been unconscious. Reassurance from medical staff that this was normal and didn't suggest there had been permanent damage, helped them through. Some had wished they'd been told more about hallucinations earlier as this would have helped them feel less worried. One woman, who'd been particularly concerned because her husband had been hallucinating for some time, said doctors had given him a brain scan to reassure her that his illness hadn't caused any brain damage. One woman was so disturbed by the memory of her hallucinations that nurses took her back to visit the ICU so she could sort out what was fantasy and what was reality.
To help his wife understand that she'd been hallucinating, nurses took her back to visit ICU when...
Daughter' She thought she was on a ship didn't she or something about that. And it was to do with the noise or'
Husband' Well one of the big issues was that, a lot of her sort of background is Jewish Polish so a long time ago, but obviously with the sort of holocaust and stuff like that, there's that sense that relatives of hers, that she had never met, but many of her relatives would have died in that. And when she was on ITU she was in a bed near a window and when you looked out of the window you could see the hospital chimney with smoke coming out of it and that had also played into this thing about, you know, being held prisoner and you know sort of Nazi guards and things like that. And that continued to be played for a while when she was on the medical ward, they moved her into a bay away from the nurses station and she began to get better.
Daughter' But that had already happened before she went into Intensive Care the first time when she had had the thing with the nurse, like when she was on the morphine when she had already been having' that seemed to be a recurrent sort of theme throughout really.
Husband' And anyway when they moved her into this other bay again she had a clear view of the chimney, it was literally virtually outside the window and'
Daughter' Haunting her.
Husband' And other chimneys with other sort of smoke coming out. It was a hospital boiler house basically is what it was. But obviously it was very unsettling for her. And so as she began to get better, one of the sort of follow-up after care nurses from ITU came to see her and we told her about this and so she said would it help if she came down to ITU. So they actually wheeled her down and she had a little sit by the bed that she had been in, and then she said, 'oh look that is what I was remember, you know this chimney, I can remember that and wasn't there somebody' - and she sort of vaguely remembered a sort of a conversation where a couple of the nurses were talking about, you know, boyfriends and things and she remembered. So it was obvious when she was there that a lot of what she was remembering was remembering rather than imagining like [laughs]. Yes so that was quite good.
Many relatives and close friends had sat at the patient's bedside for days or weeks, anxious and uncertain whether the ill person would survive. When the patient had regained consciousness and had no permanent brain damage, this had been an extremely reassuring and happy time for them. It had also been a huge relief when patients had been able to breathe for themselves and when, little by little, they'd needed less support and equipment. Most ICU patients are extremely tired and weak when they come round and this weakness can happen even after a few days of being ill and motionless in intensive care. The muscle wastage, weakness or neuropathy ICU patients often have makes many normal daily activities extremely difficult. Although its causes are poorly understood, it is estimated that 33 - 57 percent of patients who stay in the ICU for longer than 7 days could get neuropathy.* Exact data is hard to obtain as variation exists in defining the condition. Many people had been reassured and pleased when the patient had gained enough strength to move their fingers, grip and show other signs of improvement, such as smiling and squeezing hands.
When they lessened the sedation, her husband was so violently agitated they had to increase it...
It was towards the end of the second week that he began to make improvements. I was encouraged to bring in familiar things such as his aftershave and music. Things that were familiar to him would hopefully bring him round a bit. One of the biggest turnarounds was when [my husband's] dad was trying to communicate with him. He seemed to understand certain things, but obviously couldn't speak because of the trache. He was being asked questions and holding his hand, he managed a squeeze once for, 'Yes' and twice for, 'No'. That was really encouraging to feel that he did still understand what we were saying and had some awareness of what was going on. We tried to at that time explain what had happened. But with all the medication he was being given I don't suppose he remembers much about it at all. The third week his condition began to improve quite a bit. Some of the machines began to be removed and he was moved further down the ward, out of the critical area of the IC unit. It felt like you were getting further towards the door and out of the unit. It was that week that they were able to remove the tracheostomy to enable him to speak. Which was really good. And he had speech therapy. This was one of the best times from the whole experience. He was still very weak but making really good progress and started physiotherapy; just gentle exercises lying on the bed. On one day he was lifted out to stand briefly and then put into a chair by the side of the bed. He was making really good progress and was really positive about it.
Many recalled how happy they'd been when the ill person had been able to move their arms or legs and had tried to communicate, often with the help of a board and letters.
Gradually her sister was able to communicate, sit up in a chair and go outside for short periods...
And she started to be able to communicate, using the boards with the letters on. But it was quite funny that she, having been through that for the last probably about a week and a half into her illness, and we thought, you know, the first thing she would try and communicate would be something really profound or, you know. And actually it was something like oral hygiene was her first communication. Because she wanted to have her mouth cleaned because they hadn't actually cleaned her teeth. And it was, that was quite interesting to us. That was the first sort of realisation that what really mattered to her was being comfortable and being clean. And just everything that you, you know, you don't really think about what's going to happen in that situation. So we were then able to ask the nurses if they could clean her teeth for her. And we also started, sort of day by day we would clean her face for her and do things that I think she didn't mind the nurses doing, but sometimes it was, you know, she liked it if it was someone from the family doing it, because it just made her feel more comfortable.
So I started going to visit her probably twice a week. I'd sort of take half a day off work. I live quite a distance from the hospital. So I actually had a sort of two-hour journey to get there and two hours back again. So I'd take half a day off work and go down. And then I'd go down on the Saturday. So it was quite a, it was sort of for, I think that was for about two months when she was in Intensive Care. But it just seemed like, our family are quite close and it just seemed like we all wanted to make sure we were there as regularly as possible. So from that point we did start to see some improvements. They put my sister into a chair every day. Which I know she hated to begin with. She found it really uncomfortable because she couldn't support herself. But it was to keep her upright so her lungs could drain better. But she really hated it. They did take her outside a couple of times on the balcony. Which she really liked, she liked having the wind in her hair and the sun on her face. And then they started putting her into, I'm not sure what it's called, but a thing like a board, they put her on a board so that she could be tilted upright to stand up. And I know she found that really difficult the first couple of times.
Although her mother had good and bad days, she was overjoyed when she saw her sit up, smile and...
The following day she was still conscious, still the same, but she didn't so bright eyed today. The doctors or the nurses explained that she was probably tired. They were trying to wean her onto the ventilator where she does all her work rather than one where she does some work and the ventilator helps her. And it was making her tired. So she wasn't quite so good then. And the next day again, still very tired, didn't answer many of my questions. It was almost like she didn't want us to be there. She couldn't be bothered. She was so tired and that was really upsetting.
Day twenty one was an excellent visit. She looked brilliant. She smiled a lot. She kept winking at the girls, being quite cheeky almost and she tried to tickle the girls as well to make them smile. She was pulling lots of funny faces in answer to our questions, trying to communicate with us and she started to kind of mouth questions and answers, rather than just nodding and shaking. She was now responding a lot more and as we left, my Nan was with us, and when we left she pulled my Nan down to kiss her and mouthed at my Nan to take care. So that was just a real big step forward.
The next day again, a step back, very tired. Not so bright. Not so full of energy and I was having to lip read which was really frustrating because I couldn't understand what she was saying. And she was getting frustrated because she couldn't make herself known. So we took in a notepad so that she could actually write, but because she hadn't used her hands for so long she couldn't really write either. So it was a very frustrating time over the next two or three days really. It actually got to the point where I wasn't sure if I wanted to go in and see her because it was upsetting, because it was almost like she was really angry with me. 'Why can't you understand me' and she was getting so frustrated and I thought I don't want to go in because I don't know what she is saying to me.
The following day, day twenty six, I dropped my eldest off at Brownies and I just took the little one in and she was fast asleep in her pushchair. And I pushed her into the ward and my Mum said, 'She is fast asleep.' And I said, 'Yes.' And then I did a double take. I said, 'Was that your voice, you know you have spoken to me.' And she said, 'Yes'. She was grinning her head off. Again I was so excited I burst into tears and we then spent the next hour talking non stop.
One woman's partner had been sedated for three and a half months, which is very uncommon. She said she'd been overjoyed when he came round. He remembered his car accident and was surprised to see how much their baby daughter had grown.
Her partner only realised how long he'd been in hospital when he saw that his baby daughter had...
They reduced the sedation?
And how was he when he came round?
He was well, they warned us that he would be very disorientated and might not remember what happened or might not remember who we are, just because of the drugs. He didn't have any head injuries, so we didn't have to worry about that sort of thing, but the drugs he had. But he did remember who I was and I brought our baby in to see him. And he liked that, even though he couldn't speak, his like face just lit up when he saw her.
Did he have a tracheostomy?
At that point he still had like the ventilator tube in his mouth. He eventually had a tracheostomy. But he knew he was in hospital, but he was just really confused. And he still remembered his accident. Which helped, because we could say, 'You've been poorly.' But he didn't know it was three months. And then when he saw our baby she was like six months old. So she was really big and had teeth, and before she was a little baby. And he got upset and that confused him. But I think that's what made him realise how long he'd been in there. We hadn't changed, but she did. But once we'd sort of explaining things to him he did start to seem to understand, but then he'd get confused again just' so it was quite hard to deal with that, I thought. Because I thought he would understand, but he didn't. And I found that a bit difficult, to try and help him.
Often, when patients are able to breathe on their own, they are usually transferred from ICU to a High Dependency Unit (HDU) or a general ward. HDUs, sometimes called step-down, progressive or intermediate care units, are for patients who need more intensive observation, treatment and nursing care than is possible in a general ward but slightly less than that given in ICU. The ratio of nurses to patients may be slightly lower than in ICU but higher than in most general wards. Some hospitals have a combined ICU and HDU or a certain number of beds in ICU given to HDU patients. In these cases, although a patient is not moved to another ward, the level of care is slightly reduced as the patient is no longer in such a critical state. Some patients had been concerned about moving to HDU because they'd felt too weak to do anything for themselves. One woman had been particularly anxious about her son moving to HDU because he had a rare muscle condition and could do very little for himself even when he was well.
She felt her son still needed one to one nursing care because he couldn't move his fingers or...
But it was quite a battle keeping him there, because the nurses could see how much better he'd got. And they kept saying, 'Oh, he doesn't need, you know, he should be on a public ward.' And we fought tooth and nail to keep him in a room. And I kept playing the MRSA thing and I said, 'Well, you don't want to spread it round the hospital, do you? You know, it could spread, it could spread. You know, you never know.' And so they did say that if we went onto a public ward we could, you know, have a room. But he would still have been with a nurse who was looking after probably three or four other children. And he does actually need, you know, 24-hour, not someone sitting beside him, but he needs 24-hour awareness. I mean if he shouted now, I'd be off like a shot. So, you know, he's quite high-maintenance. And people don't actually, you can sort of say, 'Oh, he's very high-maintenance' and they say, 'Oh, yes, of course he is.' But it's not actually until you're with him for a day that you do see, you know, 'Can you move my arm? Can you scratch my nose? Put my arm a little bit higher?' you know, that sort of thing. But it was a very, very, hugely traumatic time.
For most people: moving to HDU was seen as a positive step in the right direction. Most had also been extremely relieved and happy when the patient had become more alert as time had gone on. One woman said that, because of the severe head injuries her brother had, doctors hadn't known or been able to predict if he would ever fully recover. He hadn't recognised anyone when he'd first come round in ICU but in HDU he started remembering who people were and, gradually, began to be able to talk. Although he'd been extremely confused and weak, he was later transferred to a local hospital where he could have intensive rehabilitation to help him become independent again.
One of the nurses took her son outside when he was in HDU and having so much more to look at...
Many described how the ill person had improved daily in HDU and had gradually started to regain their physical strength: moving arms and legs, being hoisted and sitting in a chair, eating semi-solid food and being able to go outside in a wheelchair. Some described how, with the support of physiotherapists, the ill person had been helped with walking, firstly using a Zimmer frame or a stick and eventually taking steps without any aid at all.
As her husband began to improve she read out cards and messages of support and, when he had a...
Once they'd become strong enough, some patients had needed to have surgery to help them recover further. One woman explained that her husband had to spend two weeks in HDU waiting for a bed to become available in another hospital where he would have an operation. Although he'd been making good progress, he'd felt depressed about having to wait in HDU rather than at home. Another woman said her best friend became profoundly depressed after she was first transferred to HDU and began to realise what had happened and how disabled she was. She soon started making good progress and had another operation and gradually began to be able to walk using a Zimmer frame.
Although she was very weak, gradually her friend was able to sit up, stand, walk with a Zimmer...
She became really, really, really depressed. So much so that she'd made the nursing staff aware of the fact that she didn't want any visitors, nobody at all, not even her dad. And that went on for three days. I'd phone the hospital. 'How is she?' 'She's ok but she still doesn't want to see anybody.' And she couldn't really even speak at this point. It was all lip reading and nods and shakes of the head to questions because they hadn't changed the trache round to the one with the cap on so she could talk. The staff could understand what she was trying to say sat at their desk but we couldn't understand what she was trying to say sat at the side of her. But like the nurses said, you know, 'We see this every day and day after day and although we can't always understand what they're saying we get there in the end. You know and they explained to try and ask questions that only wanted yes or no answers and you know try not ask or say anything that requires her to say too much because she gets annoyed. She gets, she got frustrated, so frustrated with herself because we couldn't understand what she was saying, which was probably one of the many reasons why she wanted some time on her own.
After a couple of days she agreed to let her dad go in and then the day after she agreed to let me go back in but she still didn't want to see her boyfriend or everybody else. I never really found out for sure why she didn't want to see anybody. And at one point the words were lip-read, they were spoken to be lip-read by us. 'I'm pissed off' [laughs].
So days progressed. She continued to improve. She spent more time out of bed. The physios came to see her to try and get her standing again with a Zimmer frame, which she wasn't very impressed about. Yeah she was what, thirty-eight and using a Zimmer frame to stand up. And she ached all over. I do remember her saying, you know, 'I'm tired. I ache. I want to go back to bed.' She'd got a pressure sore on her bottom by this point because no matter what the nurses did in either ICU or even HDU they couldn't get her comfortable. When she was in ICU and she was so big in the bed, there was no way that they could put her on her side or anything and she'd got a sore on her bum which she wasn't impressed about [laughs]. But it was a sore on her bum. It wasn't important. She was getting better. She started eating semi-solids and stuff and drinking them horrible carton stuff, supplement drinks.
Some hospitals in the UK don't have HDUs and, in these cases, people are usually transferred directly from intensive care to a general ward. Some people said there'd been no HDU in the hospital their relative or friend had been in and they'd been disappointed in this. Many felt that the patient hadn't been ready to have such a reduction in nursing care and support and that the move from ICU to a ward was too big a step for patients who'd been so ill (see 'The ward environment and nursing care'). For others, the patient's transfer to a ward had been seen as a step closer to recovery and going back home, and they described the improvement the patient had made while on the ward.
*Johnson, KL (Apr–Jun 2007). "Neuromuscular complications in the intensive care unit: critical illness polyneuromyopathy.". AACN Advanced Critical Care 18 (2): 167–80; quiz 181–2. doi:10.1097/01.AACN.0000269260.99169.70. PMID 17473545.
Last reviewed August 2018.
Last updated May 2015.