Intensive care: Experiences of family & friends
Support and information
Here people talk about the support they received when someone close to them was discharged from hospital after being critically ill in an intensive care unit (ICU).
Many people said that, when the ill person was recovering at home, they'd received a lot of support from family. This included help from siblings, grown-up children and grandchildren. A few said that grown-up daughters had often helped look after the ill person as well as taking care of the home, and this had been extremely supportive. A 79-year-old man said that his wife's critical illness had made him and his wife realise just how much support they needed in times of crisis so they decided to move closer to their daughter. One woman said she'd had a lot of support from family throughout the time her husband had been in hospital and, when he'd come back home, either her nephew or her niece had stayed with her in case she needed help.
Some people said they couldn't have got through without the help of friends. One woman said a friend and neighbour had been extremely supportive and had listened and offered advice whenever she'd been anxious. A few said that some friends had been more supportive than others and that these friendships had been strengthened by this. For some, colleagues had been as helpful as friends, giving support and encouragement.
A few participants said that other people who'd been in a similar situation had been very supportive. The partners of two people had to have leg amputations. They'd found it extremely helpful getting practical advice from others who'd gone through something similar several years earlier. It had also helped to know that they weren't alone.
He found the practical advice from another couple useful and was later able to pass on advice to others who'd found themselves in a similar situation.
He found the practical advice from another couple useful and was later able to pass on advice to others who'd found themselves in a similar situation.
Husband' The year before all of this happened we went to a Christian conference in mid Wales and there was a lady there who was a double amputee, who was the wife of a minister there [place name]. And so when [my wife] was going through the experiences that she was, I made contact with him and really drew on his experiences. And they wrote a very long email setting out the things that they thought were important. You know about contacting the OT and what pieces of equipment you might need in place and what support you might need and things like that. And that was very helpful.
We didn't necessarily find that we needed all of those ourselves. But it was useful to have that sort of check-list really of things that you might need. We have now got other friends who in a sense follow our footsteps, a couple from [place name] actually and the wife again had a double amputation and I think we have been able to pass out some tips to them.
Some people said they'd found it helpful talking to others who'd been through something similar and had joined support groups. Some support groups had been specifically for intensive care patients and their relatives. Others had been specific to the patient's condition, such as cancer support groups.
Talking to other people helped him come to terms with feelings he'd been bottling up for over a year.
Talking to other people helped him come to terms with feelings he'd been bottling up for over a year.
We then went, were invited back to follow-up with [the ICU nurse] at the hospital. And from there, that was a fantastic help. She helped us go through it, to see, you know to help us mentally more than anything else. Then we were invited back for a group of us to go to set up this, we've now set up a group called ICU Steps and from then on we've had support from our fellow colleagues in the group.
Would you have preferred to just change the subject or just not think about it at that time?
I think it was a case of just not wanting to think about it. And I think that was a lot of my problem. Because when I did start to think about it and talk about it I was fine. It was, I think it was a case of bottling it up and I shouldn't have done.
Did attending a support group help a lot with that?
Oh very much so. Oh very much so yeah. And I'm just grateful that it's been set up and we were able to talk to other people that have been in the same boat even. Other relatives we've talked about our experiences and it's been a great help.
Some said that, although they hadn't joined or attended a support group, it had been helpful talking to someone from a support group over the phone for reassurance or information. A few people said that, although they hadn't joined any support groups, they'd been given information about them by nurses and just knowing such groups existed had been helpful. One woman said she preferred not to join a support group in case it adversely influenced her or the way her son was recovering.
Some people said they'd received support and information from health professionals. For some, ICU nurses had been particularly helpful and they praised the information and support they and the patient had received when they'd attended an ICU follow-up clinic. 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.
He and his father visited the ICU bed his father had been in at a follow-up appointment and learnt that he'd had a rare form of pneumonia.
He and his father visited the ICU bed his father had been in at a follow-up appointment and learnt that he'd had a rare form of pneumonia.
I think we had something like three quarters of an hour with the nurse and then he took us back in again. And we were able to show my Dad during the quiet period, because they have a quiet period at the hospital, four until six, and we took my Dad in and we said, 'That is where your bed was Dad. That's where you were for five days. That is the bed that you kept trying to climb out of.'
What was really important and it came out of the blue, was to get the letter to say, inviting us back up to Intensive Care to have a feedback. I thought that was an excellent idea and really didn't expect it. I spoke to my sister but unfortunately she couldn't go. But I thought it was a really good idea.
And when you went back did your visit the ITU and the HDU?
Yes. We had about 45 minutes in the afternoon with the nurses chatting away to us and feedback and checking my Dad over. At one point my Dad had a cough and the nurse said, 'Are you all right?' He said he had a bit of a cold and I spoke to him the day before our meeting and he said, 'I have wrote to your Dad's doctor to let him know that it could be one part of his medication that he was on before his Intensive Care experience and they might consider changing that medication because that could be causing this little bit of a cough.' And I thought that was really good, you know, he was taking the care, the time out to do that. And I thought oh'
And was that also when you found out exactly what happened to your Dad, that he had had a mini stroke and then'?
I always thought he had had one of those. You know, for him to be comatose all night. I thought, I mentioned it. But they obviously didn't know at that time, it was in the early stages. It was a thought that I had had because I had seen him, particularly on the one around Easter time, and for me it was natural that something had happened during the night for him to go virtually unconscious and then whatever happened for it to develop into pneumonia. I always thought that but, to be told at a later date, confirmed what we were saying. What we did ask and it was something my sister had mentioned, is could it every happen again in that way? Because my Dad had had problems with his respiration, was he now susceptible to it because of his age and this had happened. And the feedback was 'no, no more or less than anybody else in the general population. Or no more than anyone else in the general population.' So that was comforting.
A few people praised the support and information they'd received from occupational therapists and GPs. One woman said that her GP had referred her for counselling after her son's illness, which she'd found extremely beneficial. Another said she'd received counselling from a service provided by her employers. This had helped her discuss tensions in the family that she'd found difficult when her husband had been in ICU.
For some people, their religion, spirituality or faith in God had helped them when the patient had been in ICU as well as afterwards. Many said friends and family had been praying for the ill person and they'd found this supportive. Some said their faith had been strengthened because they felt their prayers had been answered or because the patient had made a miraculous recovery after being so close to death. One woman, whose husband had died in ICU, said she'd become more interested in Buddhism and Spiritualism and both had helped her accept what had happened andmove forwards gradually.
One woman described becoming 'less religious' in terms of attending church, although she still felt she had a spiritual faith.
She doesn't go to church as often now and believes being a good Christian is more about how you live and treat others.
She doesn't go to church as often now and believes being a good Christian is more about how you live and treat others.
I suppose actually in a way I've become less religious. I used to go to church a lot. I used to insist that the children went every Sunday from the middle of November right through to Christmas. Otherwise there was no point having Christmas, because it wasn't just all about presents. And we always went sort of during the Easter period.
But I think that, well, I haven't been to church.
I think, I mean our local vicar is sweet. And I was very involved in the church when we were in Wiltshire, when [our son] was originally born. And they were great and very supportive and things, and I was very appreciative. And then we came up here and it was sort of a different sort of area. But then, then [another vicar] came about six years ago I suppose. And she was a brilliant, she was a lovely, sweet girl, who is our local vicar. And I was very much sort of churchy and sort of going and all that sort of thing. And she was sweet when [our son] was in Intensive Care and she came to visit and whatever. But we can't go in the winter now because he gets too cold. And there's only about six people in the congregation anyway, so they don't heat the church. And I sort of have moved away from it really.
That's quite fascinating. Because a lot of people that we've spoken to have said they've gone the other way around. That because of the Intensive Care experience and, you know, the whole illness experience, and even just stopping and having to think, has made them more religious or more spiritual. So you feel you've become less religious or less going to church but would you say your beliefs are still the same?
No, I think my beliefs are less. I believe that if you're a good Christian, I don't believe in'[dog interupts]. What do I believe? I don't like to say I don't believe in God because, just in case. But I don't believe he's a big lovely man with a big grey beard like I used to. I believe there is something there, but I don't quite know what it is. But I think that being a true Christian is far more about doing things for other people and much more how you lead your life than going to church every Sunday. Years ago I did go to church every Sunday in [place name] as I said before. And on Monday morning I was going across the road to post a letter. And this poor lady fell off the pavement, and I rushed to pick her up and sort her out. And three people who'd been sitting in front of me in church the day before ignored her. To me, they are not true Christians.
And my mother is a true Christian, and she hardly ever goes to church. My father's a true Christian, and he goes to church three times a week. So I don't think it's about bums on seats. And I think if there is a big beardy chap up there, then I think he knows who's good and who isn't good.
Last reviewed August 2018.
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