Interview 30

Age at interview: 55

Brief Outline: Was admitted to intensive care in 2005 because of epiglottitis and severe sepsis. Spent about 6 days in intensive care and 5 days in a High Dependency Unit.

Background: Occupation: bank officer. Marital status: married. Number of children: 3. Ethnic background: White British.

She had nightmares when she first came home that drew on things she'd vaguely seen or heard in...

When I moved out of Intensive Care, the first day that I spent on the Ear, Nose and Throat ward, High Dependency ward, there was somebody there that I could hear crying in their bed and being talked to by a doctor, telling her that, she kept saying that she had a brain injury and that, she said, "I know I've been in an accident and I've lost half my brain." 

And not long after I was hearing all this, there was another young woman who had a cone-shaped head, and it was cone-shaped with these white bandages curled right up, completely cone-shaped, who had little glasses and shuffled. And I just, from that point onwards that was my nightmare. My nightmare consisted of brain-injured people, where this cone would lift off like a hat and there would be half a brain. So it had everything to do with what this girl was screaming about. It wasn't the same person. I know that, absolutely. This girl was screaming about and saying that she had half a brain, and she'd been in an accident. And this girl with the cone, that, now I happen to know that she actually, this girl who thought that she had half a brain, she'd had her tonsils out, and this was the pure effect of coming out of the anaesthesia. Yes. Because I got so upset and worried about her. And the girl with the cone head, well, it was made more so because she in actual fact suffered from Down syndrome, which made, she already had a shape that sort of was familiar with that. But she had a problem with her ear and had had some surgery on her ear. But they had somehow or other bundled her hair so that her hair came out of the top of this cone of bandages. But even after I knew that, that image, that was my nightmare. 

Did you have nightmares when you came home as well?  

That was when, that was when I came home.  

For how long? Did they go away gradually?  

I would say that that lasted three weeks, before I got a proper, what I call a settled night's sleep, where I slept through without waking up, without waking up because of a dream, because of a nightmare. 

She didn't feel ill or have pain but a serious throat infection and sepsis caused her breathing...

I was really experiencing difficulty breathing then. It was [demonstrates] like that. And anyway I sat down in the clinic. And they were painting the clinic and the fumes were terrible, and that just made everything worse. And my husband got up and said to the nurse, you know, "She really, she is asthmatic as well." So the nurse said, "Oh, right, I'll get her to see the doctor next." So indeed I was taken in to see the doctor and he had a look down my throat and he said, "I've got to put a nasogastric tube down your nose into the back of your throat, and have a look at it and take some photographs." 

And he did take photographs and he showed them to me and he said, "That's your throat." He said, "This, that little black dot there, that's your airway." He said, "This is closing up. I think you've got epiglottitis. I need to speak to my consultant." So he went and spoke to his consultant.  

But it was obviously far worse than that and it was obviously far more overwhelming. And I mean subsequently I know that I had two things. I had this infection of the throat, which had closed up my airway, but I had sepsis as well. And my bloodstream and my organs were being affected by this enormous infection that I had in my bloodstream. But I didn't feel ill in what I would have thought that I would have felt [laughs]. I didn't have any pain, I didn't feel any pain. I didn't feel ill as such.

She stayed awake for four nights because she hallucinated whenever she tried to sleep, and felt...

But one of the strangest things that happens to you physically and mentally, which apparently happens because of the sedation, and the type of drug that they use, I've been told subsequently it's a known effect, and that is hallucinations. And it's a common thing but until you've actually been through it you do not really realise the intensity of the experience. My particular hallucination was that every time I closed my eyes they would say, "You should go to sleep". Every time I closed my eyes something descended over my face. And the best way that I could describe it, initially I thought it was like a very soft kite shape, soft leather, that flaps, that flapped.  That was my initial thought, and then after that I thought it was more like a bat, you know, like a bat flying with these, again a sort of triangular shape. And in the middle of this triangular shape was something moving, pulsing, which made me think that it was alive, that therefore it was a bat. And it came over my face very slowly, very gently. And like when you put anything over your face, your eyes can still see. And I would be looking madly, intensely to see if there was any hole in this thing. Because if there was no hole in it, then I wouldn't be able to breathe through it. And because of that I didn't sleep for four nights.

I decided that, for two reasons. One, because particularly at night there was nobody there, or nobody I could see, you know. So I felt uncared for. So therefore I decided that I would therefore have to care for myself. And the only way that I could care for myself was by being awake and knowing what was happening. The second reason was that every time I closed my eyes I had this hallucination of this coming up, which was just too real.

She was unable to move or talk and felt isolated and powerless.

You lose, that's it, it's a loss of control. That's it encapsulated. You have no control over yourself any longer. You are effectively in a torture situation. You are tied to a bed. And I remember saying a lot of times, "I hate this bed." And I can't tell you how much I did hate that bed. They kind of misunderstood it. It wasn't the physical bed as such always. It was the fact that I was riveted to it. I was not able to get away from it, up off it. I was attached to equipment, which attached me to the bed physically. I was spread-eagled on that bed. I didn't have a covering apart from a sheet, a terrible blue and white thing in a J-cloth kind of fabric, which was attached on either bits of the bed. And they would lift up bits of it, and you were naked underneath that with tubes coming out of you. The indignity of that, the indignity of it. The material itself, you know, you couldn't even be covered with something, a sheet stretched out. It was this J-cloth, throwaway material. That's how little worth you were. That you'd wash that up and you'd throw it in your bin in the kitchen. That was keeping my dignity so-called. That was, it was a disrespect. So I'd lost control out of my bodily functions. I couldn't speak, I couldn't communicate, I couldn't write. I was alone. Only what was in here [inside the mind].  

She would have liked more conversation and explanation from the nurses to ease her feelings of...

I was very much attached to the bed that I was in. The bed moved. It was a special wave bed, which was very uncomfortable. And I actually had a very sore back in this bed. But sometimes they would be busy, sometimes it's because they were short-staffed I'm sure, and sometimes it was because somebody else that needed far more help they'd gone to. And you were kind of aware of that but couldn't see it. So you were, you were isolated. They would come round and fiddle with things behind you, but you couldn't see what was there and you weren't actually told what was there. And for a long time of course with the tubes in my mouth I couldn't ask. 

So things, you know, if they had actually explained what's around you, what's going on and talked to you, it would be great. But there was very little conversation at all. I could, you know, out of all the nurses that were involved, which I subsequently know were involved, there was probably two of them that stand out as being vastly different from the others.

She felt that nurses were desensitised and uncaring when they put monitoring technical equipment...

And if there was anything at all I could do to prevent that feeling of being so, you're completely, you have no control over anything, any of your bodily functions, where you are, what you do, what's said to you. You're so completely out of control. If I could just try and get staff who deal with the patients not to be so desensitised to them, and try and remember that this could be them one day. This could be them. And I am sure that they would have, if it had been someone their age, if it had been one of their colleagues, if it had been a handsome bloke in his thirties or twenties, if it had been a gorgeous girl in her twenties, they would have had a completely different experience to mine. 

Intensive Care, you've got highly specialist nurses. They're highly trained, everything that they do, all of your things are monitored and fed into a computer, and they have to respond to the computer and so on. And they're actually becoming dehumanised. And I can understand how that occurs and not everybody can be total perfection. 

But to some extent, what they need to do is to supplement that. Some of the people who nurse in Intensive, it must take a particular type of person and personality because things need to be more precise, more technical. And you can't be all things to all people. So your physical needs are very well taken care of. Of that, you know, I haven't got any anxiety as far as the Intensive Care Unit at my hospital is concerned. 

And I don't think in a way that you're going to be able to alter the behaviour of the nursing staff there to a huge degree. You can nudge them and say, "Have a go. Try." So I think this is an area where they need to look far more at nursing assistants. And some of the nursing assistants in there were really quite rude. They'd actually supposed to be sitting watching you, they'd sit on a seat. But they'd sit within a foot of you and turn their back on you because they were wanting to watch what wonderful emergency activity was going on in the room that had taken the nurse away. 

And that's what I found that they didn't, they'd also become, I don't know what they'd become. They weren't nurses. They weren't cleaners. They were some kind of orderlies, that could actually have picked up on some of the niceness, the caringness that was needed, that was lacking. 

She found the nursing care she received one of the most upsetting parts of her hospital experience.

The first day that I came out of that ward I went to a High Dependency Unit, and I think it was, they have a follow-up team. So when you move from the follow-up, you also got a visit. So I, you know, a day after I'd moved, from the sister. And I remember her arriving, and she said, "Oh" you know. She was a very pretty woman, dressed in blue, long hair, with a package of stuff, a folder of stuff on her arm.  

And at the end of the bed you had the usual sort of table, which comes over the top of the bed, and this was full of stuff. And she said, "Do you mind, you know, I'm not supposed to do this, but do you mind if I put this file or this folder?" She said, "I know I'm not supposed to do that, not supposed to put it on the patient's, end of the patient's bed. But if you don't mind." I said, "No, no, no, that's fine. You go ahead." So perched on the slightly sort of wide-ish end to my special electric bed was this blue folder, hardback folder, a ring binder is probably really what it was. And then she sat down on the side of the bed and started talking to me. And I got to the bit with her where I said, "One of the things that I really, really found annoying, that really caused me distress was, if I said something, that I wasn't believed. I said, "It's like saying to you, if I say this to you right now, your folder has fallen off the end of my bed on to my feet, and it's quite sore." And she went, "Yes, right." And I said, "Your folder has fallen off the end of the bed. And it's quite sore. It's on top of my feet." And she still looked at me, and I said, "Do you see what I mean? You would now, you don't believe me. But if you turn your head and look round you'll see what I'm telling you is the truth." And that's how far I had to go, that I was being interviewed to my experiences of being in Intensive Care. This was the one thing that really upset me the most. And I was still having the same problem.  

And she looked at me, she went completely red, as she should have done. And she said, "I am so sorry." I said, "I'm sure you are now but I've demonstrated to you what I've gone through. And even you, tell me, even you didn't think you'd do that, did you?" 

She found it hard to balance properly using a Zimmer frame but continued practising, determined...

I'd push my feet down and just try and exercise the muscles to get some tone back. I'd lost a lot of weight, which was kind of helpful, so there was less weight in my legs for a change. But then she [physiotherapist] taught me, they came with a frame like the very elderly use for a walking frame, and I was allowed to take about four or five steps. And she came, showed me how to do this. And I also had, I had to be accompanied by somebody the whole time. So I spent, in the morning she came and showed me how to do this, and I just kept doing it and doing it and doing it as often as I could get somebody to stand with me, to go with me.  

But the worst thing was, is losing your balance. And you have this tendency to drop your head down, because your head's lost power and strength, your neck muscles have gone, so your head sort of wobbles around. But the major thing was, is that you have a tendency to look at your feet. And it was making yourself do what they told you to do, which is look straight ahead, to try and keep your head still, and then go for it, to get your balance back. And you just think to yourself, "This is ludicrous. I'm a relatively young woman. I feel like eighty." Maddening. But it was a question of getting out with it and doing it more than anything else. And by that evening she came back, she said, "Oh, God, you've improved so much, just even in a day. I'll try you with two sticks." And she said, "Steecks." Because she's from New Zealand, "I'll try you with two steecks." So I said, "Thank you very much." And it was quite fascinating. She had a nose ring and she had a thing in her tongue as well and dreadlocks, from New Zealand. She was good though, she was great fun. Got me on to a stick. And by the next afternoon I was going flat about eight yards, something like that. Because I was medically fit to leave, but I couldn't leave until I walked. And within I think two and a half days I walked, could walk the length of the corridor and had enough strength and enough balance to actually go up stairs.  

Because I was, also required stairs, because my bedroom here is upstairs. And they said, you know, it was just remarkable. But it's amazing what you can do with determination. You just keep getting up and keep on going and keep practising, and you can do it.

She wished she'd been given her ICU diary sooner because she learnt so much from it.

But at the end of this particular follow-up ICU visit, after that conversation, shake hands, off you go, the sister of the ICU gave me a booklet or a file or a folder, sort of that size. That's it in fact, which is addressed to me. And this is a day-by-day diary of who the nurses were, who the doctors were that looked after me, what they were treating that day, etc. etc. And it took me about five minutes to read. And I read that on the bus going to the park-and-ride [laughs]. And I thought, "Why on earth was I not given this, if not before I came for my appointment for the follow-up meeting, just five minutes before I went to the follow-up?" Because it was full of stuff that I had no idea. Things, there was one thing where it said, "Your first day, we were concerned because your heart rhythm was very low, very slow, and it was an unusual rhythm called left bundle block." And I thought, "Blooming heck, what's that?" And then they started talking about the severe sepsis and so on and so on, these bits and pieces, that I heard nobody talk about. And I thought, "Well, now, the night that my kidneys weren't working on the ward and this doctor was asking me all these questions". One of them was, he kept saying, "Are you sure you haven't got any heart trouble? Are you sure?" To the point where I, when I left there I asked my GP, "Are you certain I haven't got any heart trouble?' Because he kept on and on and on about it. Now I know why. Because I had this. And if that had been given to me the next seven days before I could speak to anybody in Intensive Care and get the answers, I wouldn't have needed that anxiety.

She wants to downsize and enjoy life more but worries about growing older.

So there was two things I wanted to do, was to sell the house, downsize, and if I can, change job. But first of all I wanted to sell the house, downsize, and get that sorted. The only problem is, although he [husband] was busily nodding, I've still got the same problem, is that he's fixated. His experience hasn't been the same. I really don't want to carry on with the way that life was. It had gotten into a rut and I realised that life was passing me by. I don't want that to pass me by any more. I want to do more with my life. And if I can help anybody, I even thought I'd give up work and I'd go and train and be a nurse. But I'm a bit old. I did consider quite seriously, still have considered, whether there is something I can do in a hospital to mitigate against what happened to me. Could I be a nursing assistant in Intensive Care? Would I be able to do that? I can work nights then as well, carry on working nights, because I do like nights. But, do you know? that kind of thing. And I've thought about it, but money comes in. If I could downsize then I'd be able to do that, because money does come into it. I couldn't earn enough being a non-professional in the NHS. It would mean downsizing just a bit too far. The pension fund still needs filling. So that's what I'm thinking. The only thing I have to admit is, so that's the positive side. The negative side of it is the terror that I've got now of getting old. I have a, I really am anxious about that.  

Because of the experiences you've had?  

And the fact that you lose control.

She lost a lot of confidence when she first went back to work because of the pace and precision...

The forms of ageism that you come up again is endemic at work as well. So you kind of, you think, you're always, in my job there are very few people of my age group, there are very few. If I count them, out of 200 odd, I can count them on one hand. Because you need to be pretty quick-witted, work quickly, everything, it's a high level of stress. Everything has to be accurate, precise, obviously because it's banking, can't afford to make mistakes. And there's a lot of pressure in answering the calls and so on and so forth. So it's a high-stress environment. Working at night doesn't help because you have the sleep deprivation. And I really seriously wondered whether I'd be able to function again. 

And it was also, because I work with younger people, you're always having to make certain that you are as good, as fast, as quick and as responsive, as quickly as they are. And I didn't feel that I was. And I really wondered whether I'd be able ever, seriously ever to get back to that again. And I really lost huge confidence.