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Intensive care: experiences of family & friends

Messages to others

The people we talked to passed on messages of advice to others, based on their own experience. Everyone is different and what works for one person might not work for someone else. Here are their comments:

In ICU

  • Trust the staff. The patient is in good hands and will receive the best care and treatment available.
  • Ask questions and for information as this will help you understand and cope with what's happening.
  • No matter how ill or injured the patient is, don't give up hope. Try and stay as positive as possible.
 

Get as much information as you can, ask questions if there is anything you don't understand, and...

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Age at interview: 52
Sex: Male
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As worrying as it is and as scared as you are about what the outcome may be, and you fear asking a question because you might not like the answer or the answer may frighten you, ask away. Ask away because you learn so much from that and if those in Intensive Care, and I have no reason to believe any different, are the same as the ones that dealt with my Dad they will answer any question you have got. They will even come forward with information for you. I think it is important to ask. I think that would help, I really do. 

Is there anything else that was important to you or any one else in the family during that time and when your Dad was back home that I haven't asked you about? Anything you want to mention or any message you would like to give to someone in a similar situation? 

Just be positive. Be positive all the time. And I think if you are positive, I think that goes round the family and people that are visiting, and you can take that to the beside as well. And you can feed off that and encourage people, you know whether it is the person that is in Intensive Care, talk to them while they are spark out. My Dad, to this day he doesn't remember us saying anything to him. Just remembers moving that one time. But be positive, as hard as it is to be positive sometimes, and talk. 

 

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Age at interview: 51
Sex: Male
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Mother' As far as advice to parents in a similar position to our own is, 'Just keep demanding information'. You won't necessarily get it volunteered. It just so much depends on who you've got looking after you and your son. Some of them are lovely. The nurse who took him the night that he was put in ITU actually came to me at one point and put her arms round me and said, 'How are you?' Which of course was enough to make me burst into floods of tears. But I was in a terrible state, and she was the only one that was interested. And she saw the connection between the patient and the family, and knew she had to look after all of us. 

A lot of them were just focussed on the patient, and a lot of them just didn't want to be there. And so if you're worried, talk about it. If you want to know, 'What's the significance of this number? Why is it fluctuating? What do I do if'?' And his tracheotomy fell apart, his tube fell apart. At one point he was getting oxygen through, and it fell to pieces. And there was nobody there. I had to put it back together. I felt I could do that. I didn't panic. I could put it back together. But I mean the fact was he was breathing for himself. And it's hard to remember that he wasn't actually going to suffocate if I hadn't got this back, you know. It was helping him, but it wasn't crucial. But, 'How crucial is it?' You need to know. 

They won't tell you because they do it all day every day. And to them it's just putting a breathing tube on. It's like when he wanted, when he got phlegm in his tubes, they had to put a, a tube down to clear it. And this is terrifying. It's absolutely sort of, 'My God, what are they doing to him?' But you get used to it after a while and think, 'Right, okay, it's just making him cough. It's just making him clear that'. But they don't necessarily explain it to you. They just do it. And you see your child sort of going into some sort of spasm and think, 'My God, what's going on?' So I mean don't suppress it. Demand to know, 'What is going on?' And let them tell, make them tell you. And if that won't do, go higher. And if that won't do, go higher. There's always a duty manager on call 24 hours a day. If you're not getting answers, demand to see that duty manager and say, 'Look, I've got to know what's going on'. 

And don't worry about making a fool of yourself. Don't worry about putting your hands on your hips and yelling like a fishwife. It doesn't matter as long as you get the information you need. 

If someone says, 'Oh, this is hopeless' don't believe them. Until your child is dead in your arms, don't believe them. You've got to stay positive. And you've got to keep on fighting. Your patient will fight. The will to live is very strong, especially if they're young. 

 
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Ask questions, trust the staff and be there for the patient.

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Age at interview: 35
Sex: Male
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Don't obsess about monitors and screens and graphs and stuff like that. Let the doctors do their jobs and the nurses do their jobs. If you've got any doubts, ask questions. And then remain positive all the way through it and strong for, I genuinely believe that being there for the patient is the right thing to do. And particularly, when I was sitting there I saw patients that didn't have anybody come and see them at all for a couple of days. And then there was another lady in there who had her husband there probably, I don't know, 60 per cent of the time. And not at night but, he was there for good durations during the day. And I don't know, I just think it's got to help. I'm sure it can't be proven that it does, but I think it's got to. 

But I would also say if you've got questions, you should ask questions. And if you can't get the answers, keep trying to get the answers. And beyond that, I think, I particularly think, I mean I'm sure there are mistakes that happen and stuff in Intensive Care, but have faith in the people that are there because, I mean particularly the nurses. The only thing else that I could say is that I cannot speak highly enough about them at all.

  • Take each day as it comes.
 

Focus on the patient and the moment in hand because things can change very quickly.

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Age at interview: 54
Sex: Female
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I think we were living day-to-day rather than making long-term plans. And I would certainly advise anybody to do that. Because we never knew what was going to happen over more than a couple of days, hence really we didn't know how fast either my daughter or my son-in-law were going to improve. When my son-in-law was really ill we didn't know what was going to happen and you just couldn't think about the future. You were just concerned with the present. And I suppose, and just to forget about other things really for the time being. Other things are much less important, they were happening and could wait.
 
  • Keeping a diary will be helpful later, in filling the gaps for the patient and for doctor's appointments after the ill person has been discharged from hospital.

Looking after yourself

  • Don't expect to be able to do everything you'd normally do as well as visiting ICU. This situation can be physically as well as emotionally exhausting.
  • Accept help and support, whether that is with domestic chores or emotional matters.
 

Accept support so you can remain strong and provide personal information about the patient.

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Age at interview: 41
Sex: Female
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I would get somebody who can sort your normal out for you, your domestic life out for you, someone that you trust. Realise that you can't do it, that you can't cope, you can't look after your house, your garden, your children, your washing. You just can't do it. And if you're a very independent person you need to not be. And you need to be completely selfish. You have to say, 'No, I don't want you to come,' or, 'I do want you to come,' and you don't worry about somebody taking time off work or whether they've got to give you a lift, you just, you've got to keep yourself going, for the nurses as well as for the patient, because they've had to find out about him through you and if you're just going to be useless, I don't think it's very helpful for anybody [laughs].

  • Look after yourself. You will need to be strong for when the patient is recovering and needs your support. Make sure you eat and don't become dehydrated.
 

Accept support, ask questions if you need information and be aware that when the patient comes...

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Age at interview: 37
Sex: Female
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I would say put your trust in the staff because they are superb. Don't be afraid to ask anything, because they don't mind answering your questions and even something which is silly, take the fear out of it. Don't be as frightened because there is this massive stigma when you say Intensive Care, or ventilator or life support machine. Just that they are doing it because they want whoever to get better and also if possible get rid of all your everyday life things. Pass them over to somebody because that is the biggest help, because then you can concentrate on the job in hand, not worrying about feeding the cat. You know things like that, if it is at all possible. Let somebody else take care of all that minutiae for you. 

And how about when someone comes home after being in Intensive Care? Is there any message or advice you could give to them then? 

Try if at all possible to make the person that has been in the hospital realise that just because they have come home doesn't mean that there has been a magic switch to say now they are well. It is fine to feel tired or lousy or anything and to recuperate, and just be there for them.

  • Try to stay balanced and make time for yourself after visiting ICU so you can recharge.
 

Leave updates for other people on the answer phone so you can rest, and try and maintain balance...

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Age at interview: 37
Sex: Female
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I think the thing that I did with the answer phone I would probably say to everybody, you know, because you need to come home and have rest and have peace and the last thing you want to do is be phoning every one up or talking. Even people talking to me, I just didn't want to talk to people. So I think leaving a message, an update on the answer phone, worked really well.

I think trying to keep your routine as normal as possible. So that the whole thing doesn't take over your life, because then when it is over, whether it is a good ending or a bad ending, some how you have got to get back to normal. And if normal had been staying at the hospital for 24 hours a day, it is going to be even harder for you to get back to normal. If you try and keep some normality, plus putting your visits for hospital in as well. It depends. Obviously I was lucky because Mum was nearby. If you have got to travel then that is going to be life changing. But if you can try and keep things as normal as possible, so when you get to the end of the situation it is a bit easier to get back to normal life again, rather than it all being completely different. 

Having understanding colleagues, work you know, if you are expected to be in work every day that may not be possible. It's having understanding work colleagues and support from family and friends. And I guess, which I didn't really do, is thinking about yourself as well. You are so wrapped up in, or I was so wrapped up with everybody else, making sure everybody was fine and that, that I didn't actually think about myself. I didn't let any of my emotions or anything out' because I was keeping happy and normal for everybody else. And that probably would have hit me later on.

When the ill person is back home

  • Try to get as much support as possible.
 

Get as much support as possible once the ill person is back home, from GPs, hospital doctors and...

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Age at interview: 66
Sex: Male
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And is there any message or advice you would give to someone whose family member is now back home and needing a lot of care?

They have got to pressurise the general practitioner. They have got to pressurize the consultants in Intensive Care. They have got to pressurise the hospital where the critical care unit is that they were nursed in, to provide a proper level of support in the community. That might be in the form of a follow up clinic, with proper follow up, it might be in the form of home visits from the physiotherapist, not simply a book of exercises, psychological input which again might be home visits as opposed to counselling on the telephone. And the GP to understand what patients go through when they leave Intensive Care. And the GPs have a very important role to play in this, but they do back off because they don't know a lot about it. And we have great understanding why GP's will not get more involved in understanding a bit about post Intensive Care problems. 

  • Be there for the ill person. Be patient and supportive and, if the ill person is feeling low or depressed, bolster them.
 

Support and encourage the ill person, including when they feel low or frustrated and it feels...

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Age at interview: 63
Sex: Female
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I think the only advice I could offer would be to say, give them a week, ten days to see how they settle down. If you see signs that they start feeling sorry for themselves then you have got to be cruel to be kind and give them a pep talk. And I think you will find they will respond. I mean my husband did, you know, he said 'Oh I can't do this, can't do that', and I said to him, 'Hey look, you are alive. You weren't expected to be but you are alive' and I think that is the thing. And when they get impatient you have just got to try and soothe them. I think you have got to be very patient yourself really. Because they don't mean it but some days they will get ratty or whatever you want to say, they are not nasty but they get impatient and they are frustrated and they take that out on you because you are able bodied and you are the one doing everything. So you are first in line and they do take it out on you. They don't mean it. They really don't mean it. 

How have you dealt with that, the frustration and everything...?

The frustration is really just talking and saying to him, 'Look we have come this far, what is another month'. And this was because when he had the MRSA his appointment at the [hospital name] to have the cast for his new limb to be taken, was put back a month and he was disappointed and frustrated. And as I said to him, 'We have come this far, what is another month. It gives you another month to build up your upper body strength'. And that is how you have to deal with it. You have to find something that is going to trigger them into saying, 'Oh yes she is right,' you know, and sometimes it is easier than others. I feel I have been lucky because of the weather really. Because he has been able to get out and that has given him encouragement. So yes. That is the thing. 

  • Take one day at a time and acknowledge small improvements.
  • Keep notes on the improvements the ill person is making, even if this means taking photos or a video, because there will be a lot the ill person won't remember and it helps them see how far they've come.

Last reviewed August 2018.

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