Intensive care: experiences of family & friends
Keeping a diary
Intensive care patients often remember little of their ICU stay because they are usually sedated in the earlier stages of their illness while they receive mechanical ventilation. When they regain consciousness, it is common for patients not to remember what happened - they may not know where they are or how ill they've been. What they do remember can be delusional memories which can, sometimes, cause psychological difficulties, a form of post-traumatic stress disorder, as they struggle to make sense of the time they've 'lost'. Some ICUs keep diaries for patients, which contain information about the illness, dates and details of treatments and progress. Often visitors are also encouraged to write messages for the patient in this dairy or in a separate book which the ill person would be able to read when they recover.
ICU diaries were introduced to help patients' recovery by giving them a better understanding of the time they spent in intensive care. These diaries can help the ill person make sense of what happened, fill in gaps of the time they lost in ICU and help them see how much they've improved since their critical illness. Some ICU diaries also contain photos of the patient attached to equipment, such as a ventilator, and seeing these photos can help patients realise how ill they'd been. Patients are often frustrated by their slow progress after ICU because they can't really appreciate just how unwell they were. Diaries can also help the relatives and close friends of patients because they can give them a focus, an opportunity to express their feelings, and help them feel they are doing something for the patient. Nurses can only keep ICU diaries, though, if the hospital in which they work has the resources to allow them the time to write them.
Here relatives, partners and close friends talk about keeping a diary when the patient had been critically ill in ICU.
She kept a diary for twenty years and wrote especially during times of stress, but her husband...
Is this a personal diary that you have been keeping for twenty years?
And during the time in the hospital you kept that up, by writing everything that was going on. Medically as well your emotions?
Yes and for me writing things down is, helps me so'
And you did that every day?
No I just write dentist, hairdressers. But in times of extreme stress I tend to write things down. And when you are sitting in Intensive Care you find you have read the same Hello magazine. And read everything can you read. And I couldn't concentrate on books, so I would just write things down and talk to him and play music. Which they did, they brought radios or CDs so you could take your own music in to help calm and keep the calm atmosphere.
Some people said nurses in the ICU in which their relative or friend had been a patient had kept a diary for the ill person. Many patients had appreciated reading it when it had been given to the patient, often at a follow-up appointment after he or she had been discharged from hospital. Some nurses hadn't kept a diary for the patient but had encouraged relatives and friends to do so because it would help them remember everything, which can be difficult under such extreme stress, and to fill in gaps for the patient when he or she had regained consciousness. Many relatives said writing down dates and brief notes about the illness or treatments had helped them keep a record of this important information, which they'd never have remembered at a later stage. One woman said she'd always kept a diary during stressful times and, when her husband had been in ICU, it had helped her understand what was happening and her own feelings.
One woman said she'd been advised to keep a diary by one of her colleagues, who'd ended up in intensive care the previous year after a serious car accident. He recommended she keep a diary for her mother because it would help fill in gaps for her later, but she actually found writing notes also helped her to deal with her own feelings. Letting her mother read the diary also gave her mother an insight into what it had been like for the family at her bedside.
She kept notes on her mother's ICU stay and turned them into a diary, which she gave her mother...
I started it not long after she had gone in. My managing director at work in June 2003 had had a very serious accident while in Spain and he almost died. He had been in Intensive Care. And when he returned to work he said, he was missing a huge chunk of his life. He didn't know what had gone on and I decided to write the diary for my Mum, so that if she did come out we could fill in those missing chunks. But it also became quite important for me to be writing down my feelings. I didn't actually write the diary up, I just wrote notes each night when I came home and I actually finished writing the diary up on the second anniversary of her illness and I gave it to her.
I did ask when we were in Intensive Care if I could take some photos of her to put in the diary, so that if she ever wanted to, she could see, especially when she was so swollen and bloated, you just can't describe to anybody how bad they looked. But I was told that I couldn't take any photos, which I was really quite disappointed about. But when I gave my Mum the diary, she read it. I gave it to her on the second anniversary of her illness. And she read it, took it home and read it on her own and she was really upset. And when I went round she said, 'I am so sorry what I put you through', you know, she only really knew what she had been through and didn't really fully understand what we had been put through - how it had changed our lives so much as well.
Many people said they couldn't ever forget the emotions they'd felt when the patient had been critically ill, so hadn't recorded these but only factual, medical information. Some said they'd written brief notes, rather than a diary, but even these had been helpful. Several said that, even though they'd never kept a diary before, when the patient became critically ill they'd kept one 'instinctively' and, with hindsight, were glad they'd done so.
She kept a diary throughout her son's time in ICU apart from of the first day, which was still...
- Many relatives and close friends said the diary they'd kept had been useful for many different reasons:
- It had helped them answer questions and fill in gaps when the patient had wanted to make sense of what had happened
- It had helped them and the patient see just how much improvement there had been since the illness or accident and this had been encouraging
- It had been useful when visiting doctors after the patient had been discharged from hospital, helping them to answer questions about the date of admission, the illness and treatments
- It had been very useful later if there'd been insurance claims to deal with or concerns and complaints about the health care
Some people said they'd kept a diary and had found it very helpful but the ill person hadn't wanted to read it. One woman said she'd written notes about her sister-in-law's time in ICU in the hope she'd be able to give them to her later. Sadly, her sister-in-law died after three weeks in intensive care.
He kept a diary so he could gain distance from what was happening to his wife and see if there...
And your son and daughter were staying with you at that time?
No, my daughter went back to [place name] My son stayed with me two or three days at a time and then he would have to go back and sort out things at his bank and then he would come back again.
And did you keep the diary off your own back or was it something suggested by the nurses? Had you kept a diary at any other point?
No. I have never kept one in my life. I have always relied on my memory. This time I wanted to do it because we were rapidly losing track of what was going on and the rapidly changing situation and I don't know why, what prompted me to do it. The nursing staff on the unit had said they had done diaries for patients before. Which they do. Which is a purely objective thing to take from their nursing notes, but I did this one purely from my perspective and I found it helpful because it gave me an opportunity to sit down quietly, reflecting and taking stock. And it also gave me an opportunity for preparing the questions I wanted to ask the next time I went in, based on what I had seen on the earlier visits and the previous visits and see if there were any trends emerging or what was happening. And just really talk through with them what I saw as being the issues in a more sensible, logical way.
Did you also write about your own feelings then as well?
To some extent, it was more or less just a simple, well it was a look at not only what was happening to my wife but also to the atmosphere and environment in which she was being cared for, the staff involved and you can't help but rate them or judge them or whatever you want to call it in terms of the way she reacted to them although she was unconscious. And able to see the dreadful psychosis being played out that the patients suffer. So that was recorded and also I was able to record my personal feelings when she arrested because I was present when she arrested.
One woman explained that nurses in the ICU where brother had been a patient had kept diaries for the patients, and visitors had been encouraged to write messages in them. With hindsight, she wished she'd written more about her brother's illness because, now that he was recovering, he couldn't believe how ill he'd been and often tried to do too much too soon. She also wished she'd been able to take photos.
She wishes she had taken photos so her brother could see how ill he'd been and why it was taking...
He doesn't remember at all the first two weeks in the High Dependency, and now that he's recovering and he is doing really well, he has a job to understand that, 'You didn't recognise us, you didn't even know us you, you don't know where you were', if only we had written in the book, 'Today it's touch and go today [brother's name], the pressure on your brain is extremely high, you know, we're waiting to see how that's coming down, to see if we can avoid surgery'. Then he got a chest infection, again which became life threatening, which was another hurdle and I don't think it's mentioned anywhere in the whole of his illness that, 'Not only are we struggling here with your head injuries, severe brain injury, but now you've got a chest infection and you're having a job to even breathe on your own'.
He reminds us that he's a businessman and, there's nothing wrong with him'. But then he cannot complete some of the tasks that they are setting him and then he gets very aggressive and frustrated. Obviously, he is a successful businessman that now can't complete tasks that they set him and he doesn't understand why not, because he hasn't seen where he's been. If only we'd have got a photograph of him in Intensive Care, or a video, wow, it would've been so, I think to aid his recovery a video of the machines, the pressure on the brain jumping from, up to thirty-six where if it gets to forty, oh that, we can't have that, that's danger level. If he could only see the swelling of the brain, the pressure on the brain, his low heart rate, his low blood pressure, the ventilator, if he could see it all he would understand he has got a head injury.
He still claims, 'My brain is fine, I haven't got a brain injury'. And yet he still can't pull the right words out of the memory bank, still today, and I mean it's August now and this happened at Easter, so we're talking April. He still hasn't got his speech fully back. He's still pulling the wrong words, which we can make light of because now obviously it's not life-threatening any more [laughs]. It's the recovery now, we've passed that life-threatening stage so it's all really on, how is he going to cope in the future?
Others, too, felt photos would have helped the patient during recovery. Some people said they'd asked ICU staff if they could take photos of the patient in case the ill person wanted to see them or had questions later, but hadn't been allowed. One woman said her son finds it hard to believe how ill he'd been, now that he's recovering, and his operation scar is the only proof he'd ever been critically ill. She wishes she'd taken photos as these would have helped him see how much he had improved.
He would have liked photos and a video of his partner's mother's accident because they would help...
You'd have filmed everything in the hospital?
I would have.
Afterwards as well?
All of it, absolutely all of it. From the moment she was, you know, on the floor. And I know, you know, you get people and you get paramedics and everyone think you're crazy and, 'What are you doing?' But I believe it actually would have helped [my partner's mother] and [my partner's father] and everyone else involved. Because, you know, if you captured it on film and if [my partner's mother] could see herself the way she was and then see herself now, you know, she'd be 'Oh'', you know. Because she was in and out of consciousness, she's missed so much that she doesn't understand. So I know it sounds weird, but I think, I think taking photos and actually putting some of it on film would actually help the person and the relatives at the end of it.
One woman said she'd kept a diary of her partner's time in ICU and had taken photos at the time of his accident on the advice of police. With hindsight, she was pleased she'd done so because both diary and photos had helped him accept what had happened and the four months he'd spent in ICU.
The diary she kept for her partner told him about what happened while he was in ICU, including...
And had you started the diary from when he first went into Intensive Care?
I think it was couple of weeks afterwards when they said about it, did we want to do it? And that's when I sort of backdated it because I could remember everything. And I'm glad they did, because it went on for so long. And then when my partner was awake and he was asking things, we didn't, we said we'd got a diary but he didn't want to read it. But when he came home and he read it all, he was really pleased because he feels there's a big gap missing.
And when I got to the accident scene the police actually told me to take some pictures. So we took the camera back and took some. So he had those. And he was really, really pleased to see them. Because everybody was like, 'Why are you taking pictures of a crashed-up car?' But he was really pleased to see them. He felt it helped him understand. But he did ask if I took pictures when he was in hospital. Which I wasn't allowed to do. But he really wishes I did. And he was like, 'Why didn't you?' I was like, 'We're not allowed'. But then he could understand what he was like because I described it. And I've taken him in and he's seen other people. But I think until you see it, it's a shock but it makes you understand. So he really enjoyed reading it, well he still reads the diary now to understand how we felt and what was going through. And the nurses wrote in there.
Was this something you did on your own or did the nurses suggest it?
The hospital actually do give you the diary to do. You don't have to do it, but they explained to me. So I started to do it. And they said, 'If he doesn't want it, you just get rid of it'. But he really, I'm glad they said that because I didn't even think of doing something like that. And now it all seems a bit blurry, but then I've got day to day of his progress. And I think if anything had happened to my partner, if I could have actually read, I think it would have helped me with say grieving or something to see how ill he was and how poorly. And I think both things, with him being better, it helps me understand what he's been through, and if he didn't pull through, understand with the grieving. I think it was a really good idea. He's pleased and I was pleased that we did it too.
One woman said she'd kept a diary for her husband and had taken photos of things he'd missed while he'd been in hospital.
Keeping a diary had been helpful for both her and her husband and she gave it to him when he was...
From about the third of fourth day when it was suggested that it would be an idea. [My husband] has actually got this little Snoopy dog, that he is very fond of. He has always liked Snoopy. So I actually took Snoopy in for him and tucked him in bed even when he was unconscious and I actually wrote this little story as the diary of what the dog saw. Obviously the dog didn't see anything because it's a toy but you know [laughs]. And eventually I did give it to him to read, but not immediately, but afterwards. And he thought it was really good. So I kept a diary. I had also been taking photos at home, because it was springtime and lots of changes in the garden, we both like the garden so, there were lots of changes going on. So I had taken pictures of daffodils and tree blossom coming out and things like that so that he had a pictorial record of the things he would have missed as well and he seemed to enjoy that afterwards as well.
It [diary] was something that I wrote while he was unconscious and I wrote it as a story about what was going on. And I didn't let him read it immediately he came home, I thought it would still be a bit too emotional for him. But as he got physically and emotionally stronger he read it and he actually found it quite enjoyable to read and useful. Because some of it had got some of my feelings at the time transposed into it. So he could see that there were times that were tough and times that were good and when who was around to support and who wasn't and things. So he found it useful.
And did you find it helpful to write it at the time. Or you didn't really think about it because you had other things'?
No it was helpful to write it. There was one particular bit that I found it quite cathartic actually writing it down on paper and getting it off my chest. And it was good that I managed to write it in such a way that it wasn't going to be too disturbing for [my husband] but it was good to get it off my chest.
One man said that, although he hadn't kept a diary, he'd occasionally written letters to his partner when she'd been sedated. She still has the letters and reads them occasionally.
He'd never written letters to his partner before but, when she was in ICU, he felt moved to write...
I was writing her letters every now and again, but not a strict diary. It was just that when something happened, I'd write a letter and through the whole period it's probably only seven or eight pages of typed letter. I mean it, with the benefit of hindsight maybe a diary would have been a helpful thing. But I didn't think about it at the time. I didn't really want to get tied to writing a diary every day. It was more writing stuff down when I felt like it.
Do you do this often?
Or it was only during this time that you felt'?
Never, never write any, it was only that time that I felt, you know, we sort of send each other cards all the time and stuff like that, but never really write letters to each other or stuff. But this is the only time I've sort of kept or written regular sort of thoughts down and stuff. I think [my partner] sort of gets them out every now and again to have a read.
A few people said they hadn't kept a diary while the patient had been critically ill in ICU but had kept all the emails and text messages sent and received during that time. Because these had served a similar role to a diary, they'd kept them and used them later.
She and her family made a diary from the emails and text messages they'd received while her...
With hindsight, some people wished they'd kept a diary or written notes while the ill person had been in ICU. One man said he'd paid to have a copy of his wife's medical records and wished he'd kept or been given a diary of her time in ICU as it would have helped answer many of her questions when she was recovering. He felt he'd been unable to answer her questions because he'd been under so much stress that much of her time in ICU now felt 'a blur'.
Some people said they'd chosen not to keep a diary. One woman said she'd been so affected by her son's accident she couldn't concentrate whenever she tried to read. Her husband had kept a diary of their son's illness and treatments but she didn't feel able to and, even after he'd been discharged from hospital, had found it difficult to read or watch certain television programmes (see 'Emotional impact on family and friends').
Some people said that no one had suggested they keep a diary and they hadn't thought about keeping one either. One woman said she hadn't kept a diary and felt that people rarely forgot such traumatic events. Another said she hadn't kept a diary, though it had been suggested, but had been able to remember everything, including dates.
She has a good memory and, even though nurses offered to keep a diary for her and her partner,...
No, they were going to. They suggested I did and I didn't. But to be honest I have a very good memory so I can say on this Monday, on that Tuesday, that Wednesday, what happened. So he didn't, they don't do it for everybody apparently any more because they don't have the staff or the time or the resources. But they did say if we wanted one they would go back through and do it from his notes. But we decided that we didn't need one because, as I say, and my husband I don't think still knows everything that happened in Intensive Care, because it is not that we ignore the subject. It is just I am very conscious that he brings something up and asks me and then I will answer it. But I am not going to keep harping on about it.
Last reviewed August 2018.