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Intensive care: Experiences of family & friends

Telling others

Here people talk about telling others about the patient's critical illness or injury.

When people first found out the patient had been critically ill or injured, they also had to tell other relatives and close friends.

 

After seeing her husband straight after he'd been admitted to ICU, she dreaded having to break...

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After seeing her husband straight after he'd been admitted to ICU, she dreaded having to break...

Age at interview: 39
Sex: Female
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When we arrived at the hospital I was taken into a room. The senior nurse went through [my husband's] injuries, which included a fracture in his neck, a collapsed lung and a pretty bad head injury. I wanted to see him. So they took me in to see him. That was quite a shock, seeing him for the first time. Because he was all hooked up to machines and had tubes etc everywhere. What struck me as well was how swollen his face was. It looked totally unlike [my husband]. He had a breathing tube in his mouth and a chest drain coming off. All I could think of at that time though was, 'Oh, my God. I've got to tell his parents.' After having been there a short while, and because time was marching on, and I didn't want to be ringing them in the middle of the night, I went home. So the friend that had come with me drove me back home and was a bit reluctant to leave me. But I said I'd be fine. 

I rang his parents and didn't really know what to say to them. I said he'd had a bad accident. But I think I underplayed it a bit; they said they'd be down the next day. At that time he was still very critical. So after I'd rung them I went back to the hospital and stayed there with him, just holding his hand and not really knowing what to do. It wasn't until later that night, as I was leaving the hospital, that I was given a bag with all his clothes and a helmet that he'd been wearing. That was upsetting, arriving home with that. The next day his parents arrived and we went over to the hospital. Their reaction was one of shock at the extent of his injuries.

One man explained that, when his wife had suddenly become critically ill, he'd phoned and left a message for their daughter. However, because she'd been on holiday, she hadn't received the message until several days later. A few people said that, because the illness or accident had happened so quickly, it had felt unreal for quite some time and that the first time they told others about it had really brought home to them what it meant. 

Relatives and close friends described having to phone people to make practical arrangements that would enable to them spend as much time as they needed to in ICU. These arrangements included taking time off work, child-care, elderly care and care of pets and the home. One woman said that, when her husband was first admitted to ICU, she'd phoned her mother, who'd then contacted her neighbours and asked if they could look after her home and pets while she stayed at the hospital. Another woman whose best friend ended up in ICU after complications during surgery, described having to track down her fifteen-year-old son, who'd gone away on holiday.

 

She had to find her friend's son, tell him about his mother's illness and bring him back home as...

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She had to find her friend's son, tell him about his mother's illness and bring him back home as...

Age at interview: 37
Sex: Female
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I started worrying about her son, being away on holiday. Remembering her voice about threatening to kill me if I got in touch with him but decided to try and find where he was anyway. So we went down to her house to see if we could find any paperwork about where he was staying and we couldn't. And we went round to her ex-mother-in-law's, [her son's] gran's to see whether she knew where he was staying. She was in a terrible state when we got there because my friend's dad had been on the phone and told her what was happening but she didn't know where [my friend's son] was staying either. 

So we went up to the local TA barracks which is where he'd gone on holiday from. It being relatively early in the morning there was nobody around apart from the gatehouse soldier person. We explained to him what was happening and he went off and spoke to the sergeant that had took all the kids away. And he said that he'd tell [her son] what was going on and try and get him home as soon as possible. So that sorted, knowing I'd be in trouble [laughs] we went off to the hospital to find out what was going on.
 

People recalled how quickly news of the critical illness or injuries had spread 'through the grapevine'. Sometimes relatives or friends had turned up at the hospital or had phoned them for information because they'd been concerned and worried themselves.

Once they'd started telling other people, many said they'd kept them updated on the patient's progress, often daily. Many had texted and emailed relatives and friends once a day because texting and emailing had allowed them to send just one message to many people in one go. Most said they hadn't wanted to repeat themselves over and over again and a daily text or email enabled them to pass on information to others quickly and efficiently, allowing them to spend more time with the patient rather than on the phone.

 

Although she didn't know many of her sister-in-law's friends, she emailed them with updates and...

Although she didn't know many of her sister-in-law's friends, she emailed them with updates and...

Age at interview: 70
Sex: Female
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So over the next three weeks I began to have a lot of support from the people who she [sister-in-law] knew. She belonged to a religious group called a Chavorah, which I didn't really know about and which was something that my husband hadn't really appreciated. And he used to rather come to blows about her religious convictions and involvement. But they clearly were a group of people who all linked up with each other and were very supportive of her and had been during the time when she was well and were being now. And there was, so that I would do a group email and the list of people who the email went to got bigger and bigger and I got more and more replies. And I found that very helpful and very nice. I felt all the time a bit guilty because I was told that I was doing such a wonderful job and I felt bad because we hadn't really been such tremendously good friends previously. And she would never know that I'd done this good job. 

 

After a whole day of hospital visiting, she sent out an email to friends and family and received...

After a whole day of hospital visiting, she sent out an email to friends and family and received...

Age at interview: 51
Sex: Male
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Mother' Emails were very important. 

Father' Yes. 

Mother' I used to come home at 10 and grab something to eat and then I would send out an email. I had a circulation of, you know, it was, well, it was fifty people, because it won't let me do more than that, just to say, you know, 'He did this' or 'He did that'. And I used to get all these messages back. Lots of people knew people who'd had meningitis. And they were saying, you know, like, 'Five year's later you'd hardly know. You know, you can talk to them. And he doesn't remember this. But apart from that he's just like everybody else.' And that was hugely supportive and very encouraging. And my sister was on the phone sort of every week, just for a bulletin. And, yes, friends and even people we'd actually lost touch with, somehow the grapevine spread around and we got emails. And their emails were wonderful. And I've still got them all. 

One woman said she'd texted a friend every day while her partner was in ICU and this friend had then contacted and updated everyone else. Another sent daily texts to update family and friends but these messages were often misinterpreted because other people hadn't understood how seriously ill and debilitated her son had been. 

 

At the beginning there was very little change in her son's condition and sending updates was...

At the beginning there was very little change in her son's condition and sending updates was...

Age at interview: 49
Sex: Female
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Keeping in contact with people, we also, because so many people knew about this that they wanted us then, they were constantly asking other people, 'Oh what's happening?' especially our relatives. So what we tended to do, we got a list on our mobiles of people who were contact names and every day we tried to do like a little message that we then circulated to all of them. We did find at times, that you'd put something on one day and it was early on' [my son] I think they'd tried to take the tubes out and they thought, they weren't sure that it was going to work. Sometimes they've done it too soon. So they tried to do it and he really reacted badly. And he was kicking out and he actually swore at the doctor. And the doctor was thrilled because it was a recognition, he had responded in the right way. So it showed that the brain, there was good function there. So it was a real positive. And we put [our son] spoke today as our text. And everyone assumed he was sitting up, talking, and he wasn't. He was still on all these wires. He was still on life-support. And that one word and we then had to 'err hang on a minute, you know, that's not what we meant. It's still really, really serious here. So it was ' then limiting, very often in intensive care nothing happens. You just sit there, and these machines bleep. And 'Well how is he today?', well actually there's absolutely no change. I mean sometimes that can go on for weeks and weeks. There was a man, his wife was in the bed next to us, he'd been there three weeks and no change. And you know people want to know that something's happening but intensive care is very slow, at times. And nothing happens. Yes so the messaging, the texting is very important, just keeping in contact.

Many people updated others over the phone, sometimes while they were at the hospital, though usually after getting back home. Some had lots of calls to make after visiting ICU, others lots of messages to return, and many said the phone hadn't stopped ringing once they were back home. Most people had found it exhausting making lots of phone calls every day. One woman described phoning her daughter every morning and every evening because she lived far away and was unable to visit her critically ill grandmother. Then having done this and given her an update on her grandmother's progress, she still had to contact other relatives. Many people said they'd found this extremely difficult because they'd been emotionally exhausted, worried and stressed after sitting at the patient's bedside all day. One woman said she'd often unplugged the phone after a long day at the hospital just to have some peace and quiet while she'd had something to eat. 

 

She often unplugged the phone because she needed some time to herself in the afternoon before...

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She often unplugged the phone because she needed some time to herself in the afternoon before...

Age at interview: 49
Sex: Female
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Did you have to come home and call other people to tell them what was happening? 

Yes. The phone never stopped going and that drove me mad because we used to have to unplug the phone to eat a meal. My sister stayed here with me for the whole time. She'd look after my dog and the house or if I had to go out in the middle of the night she'd be here in the house, you know. And she stayed with me the whole time. But the phone used to get on my nerves. And I know it was only people that cared but you'd have to explain yourself over and over again. And I used to think well if it's anybody important, only the important people had my mobile phone, so I used to unplug it just so as we could get a bit of peace in between four and seven before we went back up there. Or sometimes I'd come home if [my husband] was alright 4ish, and everything depended on his bloods you see. When they took the bloods and the gases and everything and if they were alright then I'd leave. So your life is just revolving around that completely. You don't have a life of your own. You just revolved around that [laughs]. 
 

Some people said they'd found it difficult to sleep at night, worried that the phone might ring and they'd have to return to ICU because the patient had deteriorated. One woman described how the ICU nurses had given her a pager so she didn't have to panic each time a call came in on her own phone, knowing that if the hospital did need to reach her they would call on the pager. She said this was a great help. 

 

She slept better at night when she had a pager, knowing that any calls to her landline wouldn't...

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She slept better at night when she had a pager, knowing that any calls to her landline wouldn't...

Age at interview: 37
Sex: Female
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I was, as I say, worried each night going to sleep, for some reason I was convinced it was going to happen in the night and I would get a phone call. But ITU gave me a pager, which was a lifesaver because I knew that if the phone rang, it wasn't anything to do with my Mum. You're still kind of thinking is that going to go off in the night. But the phone ringing wasn't a worry, every time the phone rang, to think, oh my God, I have got to' something has happened. But once I got the pager that was - that pressure was gone as well. And I slept fine.
 

During this extremely traumatic, uncertain time people sometimes felt they couldn't face having to go through everything all over again with yet another caller so, even though they meant well, their calls sometimes felt upsetting and intrusive. 

 

After one particularly traumatic day at the hospital, he was in such a turmoil that receiving an...

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After one particularly traumatic day at the hospital, he was in such a turmoil that receiving an...

Age at interview: 66
Sex: Male
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She [wife] arrested in my arms. I was going out, and agonising about how you're going to tell your children, though they're grown up adults, about that. And when do you tell them and so forth and the effect that inconsequential phone calls could have on you when you get home that night, and you've made the two phone calls that you dread ever having to make to your son and daughter and the options open to you then as I saw it. Because it was around 10 o'clock at night, are either to drink myself silly or go to bed and hope I sleep and wake up in the morning and see what was happening then. And so I did the latter. 

Because I had forgotten in that dreadful turmoil to ring somebody about my wife's condition, that somebody, I had switched the phone off, the house phone off because we have the business line, when I went to bed that somebody got the business line and rang me at about 11 o'clock that night to find out what was happening. And I should have switched that line off as well. But people do these things because they are concerned, they are not intending to be intrusive, but it can be so destroying when it happens. It can flatten you because you are pretty low at the time. But that is the way it is, you can't expect people to anticipate this and to understand it. That is the way it is. These things hit you harder than how they would normally.
 

One woman had a two hour drive back home from visiting her husband in ICU, usually after midnight. As soon as she'd leave ICU she'd have lots of phone calls and messages on her mobile phone, and sometimes returned calls while driving, using her hands-free kit.

Updating others had been particularly difficult for people because, often, there'd been no change or very little change in the patient's condition, particularly in the early stages. Some said the ill person had improved and deteriorated so often they hadn't known what to tell people. A few said they'd emailed or written to the ill person's friends, thinking that the patient had had very little time left, and had felt uncomfortable about having done so because the patient had improved the following day. People often hadn't known what to tell others when the patient's condition had changed so much from hour to hour or day to day, or they didn't know what the future had held. Sometimes they were surprised and pleased to hear from people the patient hadn't heard from, in a long time.

 

She received lots of calls from her mother's friends when she told them she was critically ill,...

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She received lots of calls from her mother's friends when she told them she was critically ill,...

Age at interview: 37
Sex: Female
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One of the things I did do, which probably wasn't such a good idea in hindsight, I wrote to a lot of her friends. I was so convinced we were going to lose her, I wrote a general letter and sent it to friends to let them know what was happening and that is when I then started getting so many phone calls each night, which I just came home and I didn't want to talk to people. So my husband would be answering the phone and he didn't really know what to say, and that is when I then thought I am going to put a message on the answer phone. 

Did they also want to visit? 

No not really, a lot of them are quite far away but it did actually bring her, there was a friend of hers who she hadn't seen for 30 or 40 years. And they have kept in touch with Christmas cards and they have said every year in the Christmas card, 'We must meet up'. And this friend actually turned up at the hospital to see her and their now in touch, they generally see each other every month, so that is nice. There was another friend who she has known since she was at school who was very, very upset and she did come and visit. But generally everyone else was just kind of phoning for, you know how are things going. 
 

People also needed moments when they could be alone to think in peace, to take care of things at home, recharge or deal with their feelings. One woman said she hadn't told any of her own friends about her brother's illness until he'd started improving because she hadn't wanted to talk about something so distressing all the time. 

 

She didn't want to repeat herself over and over again or talk about her brother's illness with...

She didn't want to repeat herself over and over again or talk about her brother's illness with...

Age at interview: 52
Sex: Female
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Did you also have to update or inform friends or any other relatives or it was only the immediate close family? 

It was mainly the close immediate. I personally dealt with the immediate family. My brother, he would keep some of [my brother's] best friends, colleagues updated. My sister-in-law kept everybody informed via a same message on email, so his work colleagues, his work, different friends, you know, people, she would deal with that. I didn't personally tell any of my friends because, one, I didn't want to talk about it all the time, I didn't want to say again, 'Yes this is the situation, here's where we're at.' It's just all too much, too traumatic to talk about all the time to my friends, they can't actually do anything. It wasn't until weeks after that, that actually I told my friends that, 'My brother's, this is where I've been for the last few weeks, I haven't been in touch because'. And they said, 'Oh why on earth didn't you tell us?' 'But what's the point? You couldn't do anything? You couldn't do anything, and it's been so busy, it's been an extremely busy time, you know, running to the hospital every day, running back home, catching up with people at the weekend, catching up with the family, look why don't you come and have a bite to eat'... And it's been crazy. It was crazy.

Some people had found it helpful to leave a recorded message on their answering machines so that, whenever people called, they'd hear an update. One woman said, as well as leaving an update on her answering machine, she also left notes on the door so the postman and milkman would know. 

A few people said they'd needed to talk over the phone after visiting the hospital all day because the calls to or from other people had helped them feel supported. Many said the calls and cards wishing the patient well had shown them just how much support they'd had around them at this very stressful time (see 'Sources of support in ICU'). 

 

At the beginning she felt her life revolved around the hospital and found it comforting talking...

At the beginning she felt her life revolved around the hospital and found it comforting talking...

Age at interview: 54
Sex: Female
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Did you feel you had all the support you needed at that time, you personally, or could there have been more support either outside the hospital or within the hospital in any way? 

No, I don't think I needed to. As long as I could talk to people in the evening on the telephone, especially my husband when I got home and my sister. And told people what was happening. I did need to do that, yes. And that did help, yes. But that, I think other than that, I don't think any other support would have helped. People did offer practical things when I was there, with meals, but I was adequate. I ate at the hospital [laughs] I didn't really need any other help.

When someone is critically ill in intensive care, one relative or close friend is designated next of kin and will be given a full update when they phone the ICU. This person is expected to pass on updates to other people who won't be given much information when they call. When away from the hospital, many people had relied on nurses to ring them if there'd been any change in the patient's condition. Some said they'd often phoned ICU to get a quick update before going to hospital or phoning others. Mostly this worked well and people said that the nursing staff had always been helpful, whatever time of the night or day they happened to call. A few people did say there'd occasionally been a bit of confusion in who the designated person had been and, when they'd phoned ICU for an update, they had found it difficult to get information from nurses. One woman said her father had been so distressed when her mother had been critically ill that he withdrew and gave them very little information. When she had phoned ICU for information, some nurses had been helpful but others had refused to give information to her as she was not the designated person.

Last reviewed August 2018.

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