Sources of support in ICU
People are admitted to an intensive care unit (ICU) for varying lengths of time because their illness or injuries may be life-threatening and they need intense support while they are treated, constant monitoring and 24-hour nursing care that cannot be performed on general wards]. Because critical illness is often a sudden, unexpected emergency, it can change the lives of both the patient and those they are close to in a matter of minutes. The everyday lives of relatives and close friends may come to an abrupt halt or be turned upside down as they live in the uncertainty of not knowing whether the patient will survive. Relatives and close friends usually know very little about why a person has become so ill so quickly and the ICU, an unfamiliar, alien environment, often becomes the centre of their lives as they wait desperately for any signs of change or pr ogress.
Having a relative, partner or close friend critically ill in ICU is a crisis situation that everyone deals with differently. Here people talk about the support they received or would have liked when someone close to them was ill in intensive care.
Relatives and close friends had received support from various sources, including family, friends, neighbours and health professionals, and had valued different kinds of support during this extremely distressing, uncertain time, including help with looking after homes, young children and pets.
Many people said they'd received a lot of support from family, and some said different relatives had supported them in different ways. One woman said her eldest sister had supported the whole family emotionally as well as taking care of many practical matters, such as looking after her ill sister's home while she'd been in hospital. Some people with young children praised the support they'd received from their mothers, who'd looked after their children, often moving into their homes so they could visit ICU every day. One woman said she'd had support from two families when her partner had been critically ill - her own and her partner's grown-up children. Several mentioned they'd grown closer to family members and partners because they'd spent so much time together, sharing the highs and supporting one another through the lows.
- Age at interview:
- Administrator, married with two daughters. Ethnic background/nationality' White British.
Was your husband working throughout that time?
Yes. He took a couple of days off initially and one day when I had a bad day and came home from a visit and cried, he came home. But apart from that he went to work. He was just there at the end of the phone if I needed him. He could get home quite quickly. But, as I say, we really tried just to carry on as normal.
Was he quite supportive or was it difficult because he didn't quite understand how ill'.?
He was actually very supportive. It brought us a lot closer together. Generally I keep things to myself. But no he was very supportive and he actually said, one day when my Mum seemed really bad, he said, 'Oh she will have to come and live with us.' So I wasn't even worrying about how will I broach this subject, if need be. You know he had actually suggested it. No he was very good. Didn't cook. He can't cook. So he didn't take any of those responsibilities on. But he was there if I needed him, which was very good.
Many people said support from family had been crucial during this time. One woman explained how she'd asked relatives to be positive while her son had been critically ill and to send him their positive thoughts and energy. Those who'd had large or extended families said they'd supported one another and ensured someone had always been at the patient's bedside.
Some people said they'd received a lot of support from grown-up children. One 79-year-old man said that when his wife had been critically ill, his daughter had taken time off work and travelled some distance to where he lived to look after him and his home so he could focus on visiting his wife. Another said his daughters had cooked a meal for him every evening so that when he returned from visiting ICU he hadn't had to worry about cooking. Although he hadn't always felt hungry, they'd made sure he'd eaten and been looking after himself.
One woman said she and her sister stayed overnight in hospital throughout the time her husband was in ICU. Every evening her brother-in-law had brought her and her sister a cooked meal. Many said they'd valued support from family and had wanted to be mostly with their families at this difficult time, rather than with friends. One woman said that, although her relatives had lived some distance away, they'd always been there for her had she needed support but she'd often wanted to have peace and quiet.
- Age at interview:
- Retired accounts manager, married with two adult children. Ethnic background/nationality' White British.
Did you have a lot of support around you from family and friends?
I did in respect of family and friends really. I was very lucky. My sister, everybody lives away from us here you see, unfortunately. My son lives abroad and my other son lives in [place name], so you know it is over an hour's journey for him and of course they have all got families. And life has to go on, so.. but they phoned every night and my sisters and my brother phoned every night and my friends sent me emails and things and said if I needed company I knew that they would come. And my sister used to come at the weekend when she wasn't working and things like that. So yes, I did have the support there if I needed it.
My son and my daughter-in-law and the children came from [place name], but I found as much as I love my grandchildren, they are only small you see, as much as I love them I couldn't cope with the noise and the hustle and bustle. And it was better when they went home. But I mean they said if you need me, call me, they would come any time of the day or night. So I think, because I knew the support was there if I needed it, it made me feel more comfortable. I like to think I am a reasonably strong person anyway and can cope reasonably well on my own. I think it was just the not - the time when it was not knowing if he was going to live or not. And because he was so very ill and with all the other complications we didn't know what that would entail. And I knew that I wanted him to have a reasonable quality of life and I think that was the biggest thing for me.
For some people friends had been particularly helpful, understanding and supportive and some said it was at this difficult time that they learnt who their true friends were. One woman said that, when her sister was in ICU, one of her sister's friends became 'like family' for a while as she'd become so involved in helping and supporting everyone.
- Age at interview:
- IT project manager, living with partner, no children. Ethnic background/nationality' White British.
Did anyone outside the family help at all, giving lifts or'?
Well, we had, yes, we did have, a couple of my sister's friends live down near my parents and were able to sort of drive up and give people lifts. And there was a friend who lived very close to the hospital, who would visit every day and was just brilliant and sort of, kind of went round to her [sister's] house and just made sure that the curtains were, you know, opened and closed and made sure things looked like, you know, they were still being lived in and mowed the lawn and things like that. Which was brilliant. Because I mean we went, we would quite often go to the hospital and then go round to my sister's house, because it wasn't very far away, and have some lunch or something. But it was just nice to be able to have people who were kind of helping out all round.
Did you know those friends very well at the time?
No, we didn't know them very well at all. Well, the one in particular, who lived nearby, but, you know, became sort of very, very sort of close friends, almost like family, just over that time.
Another woman recalled how one of her close friends had taken a week off work to be with her while her partner was in ICU, even though she was self-employed and wouldn't get paid for that week. Others said friends had helped by cooking meals, looking after their homes and providing emotional support. One woman said she'd received a lot of emotional support from a friend who'd recently been ill herself. Another said a good friend had offered to cook and do her washing and made sure she hadn't had to keep repeating news of her partner's illness by updating other friends. Several praised the support they'd received from friends who'd left meals for them, often on the doorstep, for when they'd returned from a busy, exhausting day at the hospital. One woman said she'd received a lot of support from her sister-in-law's friends when her sister-in-law had been ill in ICU, even though she hadn't known or met them before.
Some people praised the support they'd received from neighbours. Several explained how neighbours had cooked for them, looked after their pets or homes, or had helped by doing the shopping.
- Age at interview:
- Secretary, married with four children. Ethnic background/nationality' White British.
I don't think I could have had more support. I think that we are fairly self supporting as well. We are both strong people. I live in a community where the ladies and the men have been absolutely wonderful. When I got to rock bottom and I felt, 'Oh my God, I have come back at midnight on a Friday', a neighbour would take me on a Saturday and another one would come and pick me up.
And drop you off at the hospital?
Drop me at the hospital. Which was a three hour journey for them. And someone else would come and get me or perhaps take me for dinner. The girls were there every single night. And a different lady would put a dinner in my fridge for me so that when I got home at midnight there was something ready to eat. Whether it was a cold platter or whatever. Sometimes they left me a glass of wine. And a note. I got emails every day from friends when I was working, text messages. My family have been very supportive. My daughters especially and when I felt that I needed help then someone was in to help. I didn't have to rely on any outside help from the hospital, although the hospital did give me everything that I needed. No one ever refused to let us in or' they turned my husband, shaved him, and cared for him very well. Even when it didn't look like it was necessary to do that. He was very well looked after.
Some said health professionals had been very supportive, especially ICU nurses. Some praised nurses who'd shown an interest in them as well as the patient (see 'Nursing care'). One woman praised the support she'd received from an osteopath, who'd massaged her husband when he'd been critically ill, and she felt this had helped his recovery. Several said relatives or friends who'd worked in the health field had been able to provide both information and support.
Some people said they'd received support from other visitors in intensive care, who they'd often met in the ICU relatives' room (see 'The relatives' room' and 'Overnight accommodation'). One man said he'd received information and support from a couple who'd been through something similar themselves, and this had been extremely helpful. A few said they would have liked to speak to other people who had experienced what they'd been through.
- Age at interview:
- Father' Company director, married. They have three adult children. Ethnic background/nationality' White British. Mother' Retired NHS manager, married. They have three adult children. Ethnic background/nationality' White British.
Would you have found it helpful to talk to other family members, other parents who had been through something similar at that time? Or it was too soon?
Mother' I think probably it might have been helpful. If only because they could have given us an informal view of what we might expect and what sort of questions to ask. And with that in mind I have volunteered to the sister of ITU to say, 'Look, if you get a similar case and I can help, I'll come over and talk to them'. Because one isn't in the uniform and one isn't a professional and one isn't so necessary pushed for time because, you know, 'I've got other patients to see'. You can just sit down with them and say, 'Look, what you need to think about is this'. And talk to them. 'If you want to ask these questions, have you sorted that out? Have you thought about this?' I think that could be very, very helpful.
At what stage, everyone's different, but for you, at what stage would it have been helpful to talk to some, have this conversation with someone?
Mother' Probably quite early on.
Father' At any time actually.
Mother' Yes. I mean maybe not in the immediate crisis period.
Father' We do understand that the medical people have to be very, very careful about what opinions they give.
Father' Because they are, you know, we're turning into a society which will go into litigation.
Father' And there, you know, there are rules under which they have to operate. Obviously people that have been through the process aren't giving medical opinion. Therefore, they, it's just a sort of supporting mechanism.
Father' We understand that nothing anyone says is going to make a blind bit of difference to the outcome in our case or in most cases. But just having somebody that's been there and knows just how gut-wrenching it is.
Mother' That can help you stay positive.
At this difficult time most people said they'd valued the practical support they'd received from family, friends and neighbours as much as the emotional. This included help with looking after their homes, pets, young children, lifts to the hospital, gardening, shopping and cooking meals. Many had been struck by how understanding employers had been during this time, and the support they'd received from colleagues who'd sent cards and other messages of good-will (see 'Impact on work and finances').
For many, a great source of comfort, support and hope had been their religion, spirituality or faith in God. Some people said that, when they hadn't been sitting at the patient's bedside, they'd been in the hospital chapel. Some had visited the chapel every day and lit candles. Many said they'd prayed the ill person would survive and be able to lead a full life again. A few had spoken with hospital chaplains and received comfort and support from them.
- Age at interview:
- Doorman, single with four children. Ethnic background/nationality' Mixed Race.
I think when something like that happens, I think we're all hypocrites because when something like that happens you do tend to look up. And I did pray in a sense, you know. I did kind of, you know, 'If there's a God out there? you know. Come on' kind of thing and I did look up. I believe there is something out there, a God thing or whatever. But, you know, I don't believe you die and that's it. So I did look up and I did, you know, have a faith in a sense and kind of prayed that she would be all right and she'd pull through. I did speak to the chaplain, I forgot about that bit. Very nice man. He didn't force religion down me. You know, he didn't say, you know, 'Get on your knees and pray to God and it will be all right' and this and that. Just very frank, very honest and very supportive, very nice man. And I know the chaplain helped them out tremendously.
What did you speak to him about?
I don't know. He just talked. And I think me, [my partner's brother] and [my partner] went to the chapel one day and he just sat there and he just talked to us, you know. He said everything would be all right and we lit a candle kind of thing, as you do, and he just reassured you. He did say to me if I ever wanted to talk, he did take me to one side and asked if I ever wanted to talk. Because I think he could see me suffering with trying to be, you know, strong for everyone, you know to go and see him. I never. I probably regret that a bit. I should have. I think everything was such a rush and there wasn't enough hours in the day to do everything. So, yes, so in a sense I did have a faith. I did pray that she'd be all right.
Many said sitting in the chapel, often alone and in silence, had been comforting. Some said their faith had helped them through an extremely difficult time and to accept what had happened. Others said friends from their church had visited the patient in ICU and prayed for them. Many said friends, relatives and other people, often from across the world, had prayed the patient would recover and felt these prayers had had a positive effect on the patient.
- Age at interview:
- Gardener, married with two adult daughters. Ethnic background/nationality' White British.
It might sound silly to you, I know I said it to the wife, but I did leave you quite a few times, didn't I, you know what I mean, when you was like, and I went to church. I did, I spent a lot of time in church in the hospital. You know, it might sound a bit silly to people, if there's somebody listening to this, but I did honestly, I must admit.
A lot of people did say?
I did honestly. You know, like [my wife's] friend would say, 'Where's [husbands name]' and she would say, 'He'll be back in a minute'. She knew where I was. So did the girls. You know, I don't know, I don't know.
You went to the chapel in the hospital?
Yes, yes, yes.
And did you speak to the chaplain there at all?
No, I never seen him there at all. It was empty. I was quite happy sitting there and...
Yes, I was quite happy, you know. It suited me. I'm not a religious person, I'm not a great churchgoer, but I do believe, you know what I mean. I sat there for hours sometimes.
And it was a comfort?
Yes, definitely. You know, I don't think there's anything anybody can do when your wife's seriously ill or whatever partner's really ill, you know what I mean. There's, people try to comfort you, like the nurses and doctors, and try and be kind to you, you know what I mean. But it's different when you're going through it, you know what I mean, when you've got somebody there I think, you know what I mean. So I don't know. It was very hard, definitely.
You just sit there. And there's nobody else in there. Just solitude, and you can, nice and quiet, I light a candle and you light a candle and you say your piece to the man and, you know.
And that helped you through, especially the time in hospital?
When the wife was in hospital it helped me a hell of a lot, definitely, yes, it did, definitely.
Many people said that, although they hadn't considered themselves to be religious, during this traumatic, uncertain time, they'd prayed in desperation and hoped their prayers would be answered.
- Age at interview:
- Housewife, married, no children. Ethnic background/nationality' White British.
Did you pray at this time as well or is it not something you usually do?
Yes. Its, you pray, you make deals with God. You do everything. As I said you know it is a question of whether you believe in God, the sun, the moon, the stars, it is anything that will get you through this. I didn't go to a specific area in the hospital to do it, but I included, you know, I did everything that you could, you know, 'God, I promise I will do this. Just get him through this and we will cope.' But I am quite sure an awful lot of people do that in those situations.
One woman said her husband's critical illness had made her question her lack of faith.
- Age at interview:
- Pharmacist, married, no children. Ethnic background/nationality' White British.
And people from [my husband's] church were great. The vicar was wonderful. The first week, on the Friday night, she said, 'I haven't got anything to do on the Saturday, she said, 'I can sleep on Saturday. I can come and relieve you and Friday night you can go home and have a proper night's sleep.' And that was such a gift and so wonderfully generous of her. And so everybody was really helpful and supportive. I found that was really good for me.
Did you also have a faith that you could rely on?
I don't particularly. I found my lack of faith questioned during that time. Is there a God or isn't there? And I still haven't decided one way or the other. And one part of me says well there must be because you know, your prayers were answered and then the other part of me says, well if there is, then why did he make us go through this in the first place. So very much sort of questioning that. [My husband] says I ought to talk to [the vicar] about it. But I think as time has gone on I am sort of quite happy to let things blow in the wind as far as that is concerned.
Did you find it a comfort praying at that time even though you weren't sure one way or the other whether you believed?
Yes. I think so. I went to a couple of the chaplaincy services in the first couple of weeks and I did find that helpful. One of the chaplaincy staff was lovely. She really kept an eye on me and made sure I was all right. So that was support from an outside source that I hadn't necessarily directly sought but it was there for me, which was really great. Yes, this particular lady was lovely.
Some people said they hadn't always received the support they'd wanted and that some friends and family had been more supportive than others. A few said they'd wanted to deal with the patient's illness in their own ways and hadn't wanted to talk to other people. They'd often withdrawn from the support they'd been offered by friends and relatives because they'd needed to be alone. One man, an ICU consultant, said that, although he hadn't needed support because he'd been familiar with the ICU environment and treatments, he'd supported his mother who'd found it extremely difficult when his father was critically ill. Another said that, when his wife had been critically ill, he'd had very little support but, occasionally, his neighbours had walked his dogs if he'd been unable to.
A few people said they would have valued having some counselling when the patient had been in ICU, had it been available. Many others, however, felt they wouldn't have been able to think about anything else at the time, though some did have counselling after the ill person had come back home. Some also said they'd joined support groups then, but hadn't been able to think about these while the patient had still been in ICU.
Last reviewed February 2013.