Interview 24

Age at interview: 44

Brief Outline:

Was admitted to intensive care in 2004 because of severe pneumonia. Spent about 5 weeks in intensive care and nearly 2 weeks in a general ward.

Background:

Occupation: care assistant. Marital status: married. Number of children: 3. Ethnic background: White British.

She remembered hearing voices, having treatments and coming round unable to do anything for...

I can remember lying there and hearing voices and thinking, I was talking to my cousin about this here, and I remember thinking, "Oh, [cousin's name] there and Auntie [auntie's name], they'll be over to see me in a minute." And I could hear their voices. And I've said to her since, and she said she came in and was like talking to the nurses but shouting out to me, "It's all right, [participant's name]. I'm coming over to see you in a minute. Hold on a minute." So whether that, and I remember thinking, I could see this man jumping around and people saying, "Oh, he needs, he's got to be sedated" something or another. And apparently there was a man in the bed opposite me that had to be restrained. So whether that was there, I don't know.

The first I can remember is about, vaguely say two weeks later when I had been taken off sedation slowly and bought around. And the only way I can describe it, it was a nightmare. I woke up. I wondered what on earth, where I was, what was going on. I couldn't speak because I was on a ventilator. It was very, very, very distressing. 

I didn't fully understand what was going on to start with. I can just vaguely remember my family being there, them talking to me. I don't remember anything while I was sedated. There's some things that, maybe I heard people talking, because the funny thing was when I came around, in my head I was not in the hospital. I was where I was born. It was really, really, really strange. And it was just various voices. I don't know whether I was dreaming, I don't know. And so I just really remember just slowly coming around. To start with I couldn't do anything, I couldn't feed myself, I couldn't move myself in the bed, and so everything was done for me.

She felt very emotional when she spoke to her grandfather and mother for the first time since...

Can you remember when they took the trache...?

Yes, yes. I remember it was a Saturday and it was a different doctor on that had been on all week. And they'd, on handover in the morning, the nurse had said, "She needs it taken out. Let her see what happens." And they come in and I remember thinking, "I hope they're going to give me an injection to make me a bit dopey or something." Because I still had this vision that it was some great big thing in my throat. And they said, "No, [participant's name] it will just be taken out and a plaster put over the hole." And when they'd done it, I can't, to this day I can't explain the relief, how pleased I was with myself that I'd done it. Even though I was still on a mask with oxygen, I'd actually done it. And I remember that day the phone, my grandad is still alive, and he used to ring every day to see how I'd got on. And that day he rang and they give the phone to me and I spoke to him. And that there, well, it was very emotional, and then in the afternoon I'd had, like my husband and my daughters had been in, and my mum was coming in, and they never told her I'd had it taken out. And she come through the door and I spoke to her. It was, I've never, I felt so proud of myself that I'd proved them wrong. They'd said, "You'll be here till Christmas." But I'd done it. And I think once that was done I realised that, "Yes, I can do it". 

The physiotherapists encouraged her to walk even though she was weak and found it difficult to eat.

But I did eventually, by pure determination, come off the ventilator. I was still very weak. I was still catheterised. I had physio every day. When they came in they - what's the word - pound on my chest and move the mucus to get it moving. I would slowly sit on the edge of the bed to try and build up my strength. I'd sit in the chair. I found I was so tired all the time. I slowly, I would stand. But all this time I was still on, I had a mask with oxygen. The physio really encouraged me to take a couple of steps, but it was really hard. You know, I looked at myself and it looked like I looked, I can only describe it as, well, I had legs like a sparrow, I'd lost so much weight. I had, when I first came round and had the ventilator in, I could only eat soft foods. But I never had no appetite and I found it, I just didn't feel like eating, I never had no appetite. It really was hard. The food tasted, with having the ventilator in, it tasted awful. There was no taste to it. It was so hard. They did get mad with me because I was not eating. And they said I was using up whatever energy on breathing, and so I wasn't putting on no weight, I wasn't building up no muscle.

The physios in Intensive Care used to come in twice a day. They were fantastic, absolutely, I can't fault them at all. They were very encouraging. I found I could say whatever I wanted. And what was good was that some of them had seen me that day I came in. And they used to come in and manipulate my lungs. And so they knew how ill I was, you know, had been. And so they saw the daily progress. Which did help. 

She felt more positive after having her legs shaved by nurses and her eyebrows shaped by a beauty...

But when I was in Intensive Care and they used to say to me, "Do you want to see, shall we get the mirror, [participant's name]?" Because they used to come, they washed my hair, I could have that done every day if I wanted, and they'd dry it. 

They, this sounds odd but they'd shave my legs, you know. They really, they'd come and they'd rub cream on my hands or on my feet.  

While I was in there I had a period. And that was, because I couldn't do nothing, and that was when I first come round, and they were brilliant, you know. They never, you know, like I say it was very unpleasant for me, and to think that I had to rely on other people to see to things. But it just, you know, I think, after going through all that there, I think there isn't much now that I couldn't cope with. 

It's made you a much stronger person? 

In some ways, yes, and in other ways, no. But like I say, as a treat, I said to my mum at the time, I said, "Oh, you know, I must look a complete mess." My eyebrows, things, just silly, not really, no, it's not silly things, it's just things to make you feel better. And an auntie paid, I had a lady come in and do my eyebrows. You know, they asked if it was okay, and they said, "Yes" you know. Because it was more, the only time I had a male nurse was when I was first admitted. When I went into the room on my own I had just the ladies, the girl, you know. And they said, you know, "We know what it's like, [participant's name], you know, you don't want to be sat in here with hairy legs" you know. Silly little things. And they were brilliant. 

She felt that her care was inconsistent because some nurses helped her with daily activities...

Like I say, I remember waking up and seeing, and I had a male nurse there. And I wasn't all that struck on him [laughs]. Sometimes they always seemed a bit harsh, you know, when really all, I don't know. There was some that, I found that some would say, "Right, [participant's name], come on, you know, even if you have a flannel and just wash your face." And I remember thinking, "I can't even lift up a flannel to wash my face." And then, or they'd say, "Come on [participant's name]." I couldn't even pick up a cup, so they would bring me it in a baby's beaker with a straw, for me to drink. And they'd say, "Come on. You've . . ." Certain ones would say, "Come on. You've got to do it." And I think, and I'd sit and cry and say, "I can't do it."  

And then another one would come in and automatically say, "Come on, [participant's name]" and would help me. I always, and I have told them this, when I went for my follow-up in Intensive Care, I've told them the continuity of like the care plan, there's none there. I found that, perhaps with what my job was/is, I don't know yet, there's no continuity there. 

In Intensive Care?

Yes. You had that one nurse for twelve hours, yes. But you might one day, like I say, one would do one thing, and the next day you'd have a different one that would do everything for you, feed you say, you know. That I found really hard.

She started off by just being able to stand up and sit down but could eventually walk down the ward.

The physio used to come down, I'd do like, at that time, I'm trying to think now, I know I had the catheter took out, I can't remember now. But they'd get me so that I could stand up and use the commode. I would stand up, they'd put like a box beside the bed and I'd stand up and sit down, do things like that there. Then I'd sit in the chair, just take a couple of steps up to the chair. But they were always, I had hold of them if you know what I mean. I'd do that there. 

Then it got a little bit, they'd follow me behind, somebody would walk with me and they'd follow me behind with the oxygen. And I basically, I did do it bit by bit. I'd walk out to the door. Then I'd go out and walk to the nurses' station. I think on that day before I went up on to the ward, I walked right down to near enough what bed I was in before. And that's how it was. It was just a case of just doing it bit by bit. But I did find it hard. 

She found it difficult to climb the steps leading to her front door and had to be wheeled around...

And so I was bought home, still very weak, only taking, well, walking small, very, very short distances. And I came home. It was very emotional, but very frightening. I came home and the escorts that I had, I've got several steps to come up, and I thought, "That's easy. I can walk, lift my legs up." And it was one of the hardest things I've ever done, just to get in those three steps, to get in the front door. I thought, "I'm going to get in there, because I'm not going back." And I came home and that night I had the oxygen on all night, because I was so frightened that I would go to sleep and not wake up again, that I would stop breathing.

When I first came home I slept downstairs because I couldn't do the stairs. And my husband slept on the sofa beside me because I just did not want to be left alone. I was frightened. The first day I was home, I stayed in bed. My children were around me, I was so pleased. But it was frightening. I had to, well, I couldn't, I sat on a computer chair with wheels to be pushed around in the home, at home here. And I still had to be helped to be washed.  

Her illness made her realise that life is precious and she is now less tolerant when people...

And has your attitude towards life changed in any way? 

Yes. It makes you realise, you know, this isn't a dress rehearsal. This is the real thing, and life is precious. And, like I said, I have got zero tolerance, I cannot put up with people moaning about they've got a cold or they've got an ache in their leg or anything like that now. 

It has just made me change my life, my outlook on life is so different. I find that I've got zero tolerance. I can't sit and listen to people talking about aches and pains, when really they don't, they're lucky that that's all they've got.

At first she was afraid of being on her own at home but set herself small goals and gradually re...

Eventually my husband had to go back to work. He stayed home for me for six weeks. But it was frightening to be left on my own. Although I knew that people were only a phone call away, I was here on my own. But it was a case of just building up confidence. And so little goals were set. The physiotherapist came out one day and took me for a walk around the block. I couldn't do it on my own, but I found that as long as I had somebody with me then I would go for a walk. The same with driving the car. To start with it was hard, I was using muscles that had gone. But it was just a case of building up confidence. I would have somebody with me, just drive down the road and back again. Silly little things really. But I've done it. 

The biggest challenge was walking to the school, which is a fair distance away, to take my daughter. And I did it. That has been, that's the only way I've managed to do things is by setting goals and reaching those goals.

She was waiting to have some counselling to help her deal with feelings of guilt.

But it is hard. I admit I'm not very good company. I find it hard accepting what I've been through. I feel guilty for putting my family through what I have. I can't bear to think of my family having to come and say goodbye. I just find it so hard. And I'm always wondering, I'm frightened if it happens again. Although I'm told that there's a small, very small chance of it happening again. 

And that's what you'd like to talk to the counsellor about? Why you're having these feelings? Is that, you know, is that what you'd like to talk about? Why you're having these feelings? 

Yes, yes. 

Have you talked with family or it's someone outside the family you really want? 

I have talked to somebody about it, who's in the family, and they said, not our immediate family, but they said, you know, "You shouldn't, you have got nothing to feel guilty about." But I just, I just do.  

Even now?

Even now, even now I still find it hard, you know. I just, you know, to imagine my, to imagine my kids there. I just, and, you know, my mum and dad, and my brothers. You know, I just find it so, I just feel so raw, so, it hurts.  

She got snippets of information from family and nurses and from reading her cards and letters.

My family used to come in at various times and feed me. The nurses were good. I found out more from the nurses than I did doctors, what was actually going on. All I was told was that I'd been seriously ill. It wasn't for several days, maybe weeks, before I finally found out what was wrong with me.  

I had to have scans. At one point they thought I'd got TB, but I didn't. I had biopsies done from my lungs and was told I suffered from pneumonia, but a very serious viral form of pneumonia. 

I would pick up bits from what my family would say. But I didn't, I think they didn't really tell me the full extent of it until just before I came off of Intensive Care. And things, I'd receive cards and letters from people. Because like friends couldn't visit me, they'd write to me and send me letters, and I started like picking up on that, you know, little things they'd say. And I thought, "I must have been really bad." And I'd ask my family, and obviously they found it hard to talk about, to say, you know. And perhaps they didn't understand all what had happened.  

And what did the doctors or nurses, you said the nurses told you more than the actual doctors?

They would just tell me like what the drips were for, why they were doing things. I mean I put it down to the nurses.

Her family were her 'rock' during a difficult time in hospital.

My family is what kept me going, you know. Without them I don't know what I would have done. 

You know, like I say, there was times when I was in Intensive Care to start with, I thought, "I can't do this." I can remember lying there and thinking, "Why me?', you know. Why, when there's older people, why has it got me?" I kept thinking, "Why?" like I say, "Why me?" And I did, there were times I thought, "I can't do this." You know, I cried with frustration. You know, I'd lie there and look at that clock going round and round.  

And the days, well, the days and nights just became one, you know. You know, even when the nurses were in and out all the time, it's not the same. It's, you know, they became friends, yes, well, I say friends, but, yes, I suppose they were. But then they'd say to me sometimes, "If you're tired, [name], you must tell your family not to come in." And I used to say, "I can't, because they are my rock." Without them, unless I see them because then I think, "You've got to keep going, you've got to keep going" you know.