I have kept a diary for about twenty years. I write everything in the diary and I have done, I have done a book of everything, you know all’ every single thing. I have got all his notes beforehand, notes afterwards, all the literature that we were given in the hospital. As you can see, we have got plenty of information. I kept every Get Well Soon card. And I have kept all his stickers and I wrote when I was in the hospital, I wrote exactly what I felt down. And I have read it since. My husband has not read it.

Is this a personal diary that you have been keeping for twenty years?

Yes.

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.

And when did you actually start the diary?

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.

I kept a dairy right from the beginning. It was just an instinctive thing I wanted to do. I just wanted to record things. I’ve never been able to write the first day. I think that’s still so vivid that I don’t need to write it down. But dates and times and amazingly, especially with an accident, if you’re going to have a claim of some sort, those dates and timings are very, very relevant as well. And even when you’re seeing specialists, they want to know how long was this state for, how long was that state. And you don’t remember those things, you need to write them down. So keeping a diary ‘ and at night it was quite good, you’d go back and you’d just keep the notes up. And it made you sort of think, ‘Ooh weve done that today’, and that was very positive. So that was very good.

The routine gave me time to write up a diary, which I did, and reflect on what was happening. And by writing things in a diary and just checking back allowed me to see possibly a picture of what was happening. And in spite of the enormous downs that would come along… you could see a slight improvement so there was some encouragement in doing that. Plus the fact that I needed to keep on top of things like field the odd phone call for the business and this sort or thing, and keep on top of the house.

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.

They had also at the hospital provided some books and you could write a note in the book that you were there and how you were feeling. On reflection now I wish I had entered into the book more about his condition because I would even, you would enter a light-hearted note, ‘All the things you do to get a day off work [brother’s name], this is outrageous’, because you hope at one time hell read them and they’ll be enjoyable for him to read. But now that he is recovering obviously he doesn’t remember any of it at all, he has no recollection at all of the whole, nearly four weeks in the Intensive Care.

He doesn’t remember at all the first two weeks in the High Dependency, and now that hes 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, were 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 hes a businessman and, theres 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 hes been. If only wed 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 were talking April. He still hasn’t got his speech fully back. Hes 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, weve passed that life-threatening stage so it’s all really on, how is he going to cope in the future?

If I could change anything about my experience, it sounds a bit weird, I’d actually film it. I’d film it for [my partner’s mother]. I’d have filmed her in Intensive Care and I’d have filmed her in the hospital and I’d have took photos, because it would help her understand, because shes missed so much of it. So my advice to someone, even though it seems a bit strange, would be, you know, get it on film for their recovery. Believe they’re going to recover. Take notes, take photos. And actually help the person when they recover understand.

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, shed be ‘Oh”, you know. Because she was in and out of consciousness, shes 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.

I kept a day-day diary of everything that was happening, who came to visit. And you could really see the picture of what people did for each other and things like that. And he was surprised, some of his old friends that he hadn’t seen for a while were there to, even just were taking my baby out or coming to look, they felt they needed to look after me for [my partner] sort of thing. And it’s just, you do really see sort of peoples true colours I think.

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 wed 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 theres 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, ‘Were not allowed. But then he could understand what he was like because I described it. And I’ve taken him in and hes 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 hes been through, and if he didn’t pull through, understand with the grieving. I think it was a really good idea. Hes pleased and I was pleased that we did it too.

Had you kept that diary all the way through then?

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.

We didn’t keep a diary. But we did write these daily emails. And I sort of kept all those emails and collated them into a thing which I think I gave to my sister. But I can’t remember if I actually gave them to her or not. But she had all the text messages that were sent from her phone. Because we used her phone because it was easier, because there was all her numbers on it. And all the emails that we sent, she got copied in. So she had them all when she got better. But that’s, I mean that in a sense formed a diary, because it was sort of a day-by-day account of her progress. And I remember at one point she, I said that wed been sending these emails, and I’d read back over some of them, and this is when she was still in Intensive Care, and I said, ‘Oh, it’s amazing to see what progress you made. And she wanted me to tell her all about her progress and what had happened. Because, you know, it was only at that point when I actually realised that she didn’t actually know what had happened in the first three weeks or so. She was completely, kind of, it was all just a complete haze.

Did they keep a diary at all while he was in Intensive Care?

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.