Interview 27

Age at interview: 68

Brief Outline: Was admitted to intensive care in 2005 because of pancreatitis and septicaemia. Spent 2 weeks in intensive care, 2 weeks in a High Dependency Unit; 6 weeks in a general ward, and 2 weeks in a rehabilitation hospital.

Background: Occupation: retired management consultant. Marital status: married. Number of children: 3. Ethnic background: White British.

He was dependent on others for his care and communication, and felt his 'real self' was trapped...

The level of care was at a high level and I felt fairly secure, even though I still continued with my hallucinations, even though physically I was in a weak state. I couldn't get out of bed, so I had to be taken out of bed with, by means of a hoist. And having been a fit person this was a tremendous load, burden to carry, being ultra-dependent on other people, not being able to sit up in bed, I was so weak. And I'm not saying that feeling sorry for myself, but that's the reality, that's the state in which I found myself. 

And I realised that I was beginning to think more clearly, that I recognised that my physical state wasn't good. And when I tried to express myself, before I started to speak properly again, my wife [wife's name] and son [son's name] tried desperately to help me in communications. And we developed sort of a language where [my son] for instance would run through the alphabet and I had to nod at a letter, and we built up words that way. Only my mind and body was reacting much more slowly, he'd gone too far down the alphabet. And this was at its most relevant when all I was asking was that the rest behind me be raised so that I was lifted up in my bed. 

Well, that took an absolute eternity to get the words out, I couldn't articulate them, but I could nod at the letters. And I tried to write the letters, but I'd lost my dexterity. I couldn't write. That again was another burden.

I've just been reminded by my wife [wife's name], in fact corrected, that the experiences about trying to communicate and the frustration was associated with that actually occurred in the Intensive Care Unit. I thought it was in Progressive Care, but I stand corrected. It was frustrating because I knew what I wanted to say and communicate but was unable to do so. And I felt increasingly, both from that experience and when I certainly was in Progressive Care Unit, that there was the real me trapped inside a piece of meat. I think I recall using that expression. I felt like a lump of meat on a butcher's table with the real me inside it but not able to get out.

He was moved back to HDU on several occasions because of a recurring infection.

I shuttled backwards and forwards between this Progressive Care Unit, which was a new comfort zone, and the general ward, which was a low-level comfort zone. I felt terribly vulnerable and exposed there. And the reason for shuttling backwards and forwards was that the source of the infection within my system couldn't be isolated. Finally it was found to be a problem with my bile ducting, which had kinked. And that was the source of the inflammation which was attacking the multiple organs within my body.

Was I glad to move out of Progressive Care Unit into general ward? No. I knew that the level of care was going to be different. And having experienced Progressive Care Unit, then general ward and back to Progressive Care, general ward, back to Progressive Care Unit, I knew where my real comfort zone was. 

He adored some of the nurses but felt others were very busy and uncaring and, on one occasion,...

But I've got say, "Beware' some of you medical staff, that you can so easily give the wrong impression. You can so easily give the impression you'll be glad when your shift finishes. Or that you're looking forward to your lunch break or your tea break, and you'll come back to see to your patient afterwards." Now that is scary. And it was scary early in my stay on the general ward when I was still dependent on being hoisted both out of and into bed. And if you don't get the timing right, as a patient, you find yourself literally stranded.

And the more tired I became, the smaller became my comfort zone. And my comfort zone certainly was not the chair at the side of my bed. That was a high-risk area to be in. I felt so vulnerable and threatened. Visiting time had finished. It was approaching the time for outgoing day staff and incoming night staff. And no matter how I pleaded, this was experienced on two occasions, I didn't get put in, back into bed until the evening shift had come on, when I had spent twelve hours in the chair at the side of my bed.  

And on some occasions that occurred when it was not possible for the physios to get to me. So I had been chair-bound for twelve hours. And that is very, very frightening. Nobody there to give you reassurance. Your family has gone, those who were sort of giving positive support. And you realise that, you might, I realised that I didn't like necessarily all the nursing staff. There were some I really adore because I saw that the quality and the love and care shining from them. But I was ultra-dependent even on the people that I didn't like or took an instant dislike to. Some of which couldn't be substantiated. But that was feeling, and feelings are difficult to handle. And I realised I had to speak in a most genteel way, almost at times in a grovelling way, to get the attention of staff who would not normally show me the care that I felt that I needed. 

He had to balance his dependence on nurses with his own dignity as a person, and was pleased when...

It's a balance between maintaining your dignity and being pragmatic, you know. You can't do it. You are highly dependent on other people caring for you in a physical sense as opposed to a medical sense, and yet still wanting to maintain dignity. I recall, because they were short-staffed, that on one occasion taken out of bed into the chair at the side of my bed, I was hoisted by what can only be described as a hoist that you would use for bales of cotton or wool. And that's exactly how I felt. I'd lost at that point all sense of dignity and self-respect, or I felt that the hoist had deprived me of dignity and self-respect. And I said there and then, 'Never again am I going to allow myself to be hoisted in that fashion.' 

I didn't mind the hoist which sort of allowed me to hold on to a bar and lifted me up and I could straighten my legs. That was okay, that was acceptable. But not to be bundled up like a piece of baggage. It was important also to accept that some of the challenges I was set, which I didn't like, had to be confronted. I speak to you in these very personal terms because this is how it happened. I was dependent on using the commode, for people to clean me up after I had used it. And then there came a time when one of the nurses, a male nurse, who I thought was tough but very fair, I said, 'I need cleaning.' He said, 'Well, what are you doing about it?' And I said, 'Well, you know, you clean me up when I've used the commode.' He said, 'Well, I'm not going to do it.' I said, 'But I've forgotten how to do it.' He said, 'What do you mean, forgotten how to do it?' I said, 'Well, the last time I wiped my bottom was ten weeks ago.' 

He said, 'What would you do if you were at home?' He said, 'Would you ask people at home how to do it?' I said, 'No.' He said, 'Well, there you are then. Get on and do it.' And that was, that seemed like an Everest to me, you know. 'How am I possibly going to do this?' But I did. And that was such a significant step forward. That was a make or break point. And so that which seems impossible, you've got to say, 'Okay. Go for it.'

Learning to walk again felt like a big step forwards and he always told his family how he was doing.

The greatest step forward for me was when I was able to be part-mobile, with a Zimmer frame. And you think, 'Good grief, a Zimmer frame. This is for old people.' No, it's for people who are determined to get better and to become mobile again. And that's another positive spin that you can put on the Zimmer. It is a means to an end, it is not an end in itself. 

And I recall vividly how each day I would report to my family when visiting took place the progress I had made. The first occasion was, 'To the end of my bed.' Then it was, 'Halfway across the ward.' And then it was, 'Moving down the ward.' And I would tell them to what bed I had made a journey, 'Bed number 4. Bed number 6.' And the furthest I got was to bed number I think 10' in a 24-bedded ward. That's before I was moved from the general ward to another hospital. 

Interestingly I felt that the physiotherapists were under tremendous pressure to do justice to what they felt by love compelled to do. They had too many patients to look after. Some patients responded well, and I couldn't understand why patients who were mobile chose to spend all day lying down on their bed. And I, who wanted to be mobile, spent most of my life sitting in a chair, desperately on occasions wanting to get into bed, to be hoisted into bed, and not knowing how to do it. At least mentally knowing, but not knowing if physically I was strong enough to do it. 

He was terrified when he fell into his Zimmer frame but says people must accept the challenges...

One occasion getting out of bed with a Zimmer, the next I realised was I was on the floor inside my Zimmer frame. And I was absolutely terrified, absolutely terrified, because there was no way that the two nurses who were in attendance could physically lift me. Only 11' stone or less, and when they said, "Push on your feet" well, there was no co-ordination or strength there. And that was frightening. I perspired. 

The most wonderful thing that ever happened was that within an hour of that experience the physios came and said, "Right, we're going to walk you with a Zimmer frame." And if you can relate to being in a car crash, the recommendation is once you've calmed down, get back in a car and drive again. That had to happen, and fortunately it happened within a time span, which was significant. Within an hour of my having collapsed in a heap on the floor, the physios were there and said, "Right, we're going to walk you with a Zimmer." And they'd no idea that I'd collapsed in a heap. They didn't know until afterwards that that had happened. But that was vitally important.

And, "It's important to recognise" I said to myself and I'm saying to you whoever are listening to and watching what I have to say, "It's important to accept the new challenges that the physios set you or that the hospital staff set you." Challenges where you think, "No, that's too far. I can't do that." Dependent on making use of hospital bottles when you're in bed and moving to the point where you've got to discard them. You think, "I can't do it." And say, "Oh, yes, you can. You've got to do that." Or making use of the commode because you can't, you stop using the bedpan, you move to the commode. And that's a significant move forward. 

He thought rehabilitation hospitals were for the elderly but soon adjusted and made excellent...

Here I am, I'm 68 years of age, not feeling 68, mentally certainly not, having this concept that the hospital I'm now going to go into, the community hospital, is for aged people, who are taken from their rooms each day into either the dining room or to the day room with a television blaring in the background that nobody's watching, everybody goes to sleep. I'm generalising here, but this is the impression I got, that I observed on the occasions that I did visit.

I went into the community hospital only able to walk with a Zimmer and two weeks later I only had one stick, which is when I came home. And you think, "That's impossible." No, they know what they're doing. 

There are some splendid physios around. Even though I was disappointed that the intensity was not there that I thought there should be. Well, they knew what they were doing. They pushed my body as far as it was capable of being pushed. And I remember saying to my family, "I am fourteen steps away from home". And then later on saying, "I am eight steps away from home." And two days before I actually did come home, which was on the 15th of April, I said, "I've done it." 

So the challenges which seem, I think I used the expression the Everest, the mountain that you'll never ever climb, the impossibilities become possibilities and realities. And even though the body is still weak, you've got to drive it. And that's another lesson I learnt at that interface between being in the community hospital and coming home is the mind, in my instance, was far more advanced in recovery than was my body.

He felt very emotional when he came home and was unprepared for adjusting to being with his wife...

I was away from home for three months. And I really hadn't rehearsed how I would cope with that re-entry into my own home. And I was very emotionally charged, I wept unashamedly when I came in. And even now as I'm telling you that I'm feeling the emotion welling up within me. So it doesn't disappear. You just, I'm grateful to all who supported me, the nursing staff. But I cannot overstress the importance of having your own support network in the form of family or friends. They are vitally important.  

I still get very frustrated. I still find that, if I sit too long, yes, my legs are much stronger, my muscles are coming back, but I will seize up if I sit down more than half an hour. When I come up to stand and start to move again I think, "Good grief, you know, come on, get lubricated." 

Another danger in coming home, yes, I'm talking about the re-entry, it's about living with your wife again. We'd been living apart for three months and nobody gave any guidance or thought as to the problems that that readjustment would cause. I couldn't have done it without the understanding of my own wife. I couldn't have done it without my own spiritual faith and belief. That gave me a lot of strength. And in that respect we've spent much more, forgive the expression, quality time together as a husband and wife, that in the normal busyness of life, we sort of passed and did our own things. But we've been forced because of the physical limitations that I'm currently experiencing to spend quality chunks of time together.  

For him, moving on and recovering included talking with relatives about what had happened and...

I've had to accept that whilst part of me wants to know every detail as to what's happened, there's another part of me which says, "Who cares? Life moves on." And when I say that I don't remember anything within the Intensive Care Unit, I find that the family will mention something. And I think it's important for them that they talk out their experience. Because whilst we've arrived at the same point today, their journey has been a parallel journey to mine but different. And they mention certain things and I think, "I remember that. I remember that." And yet if you'd have said to me do I remember what happened in the Intensive Care Unit? My first reaction is, "I don't remember." 

And I think it's important that I purge myself of some of the silly hallucinations, and I can put them, I can discharge them and get rid of them. I think that's important for whoever listens to what I have to say. "Don't be afraid of talking out your hallucinations, of being prompted by your family members, so that you can laugh about it." And we actually have laughed about it. And that's the best way of dealing with it, and you put it on one side.

He didn't want to hear it would take a long time to recover but realised that people meant well.

And I think that's what's vitally important for a patient who's recovering, to have the positive reassurances. At the same time to have honest feedback, though sometimes the honesty is not what you want to hear. Honesty like, "It's going to take a long time for you to recover. It will be Christmas 2005 before you can talk about this experience in the past tense.' That seemed an eternity away, and I wasn't strong enough to face that long journey. And people saying to me, and it was a bit of an irritance, and I know they were trying to help me, visitors of other patients or patients who'd gone through the same experience saying, "Rome wasn't built a day" and, "Step at a time. Step by step." I can now understand the love and the feeling behind those sentiments, but at the time they seemed to be cold statements, which were not particularly helpful.

He wanted to know whether his gall bladder would need to be removed but doctors gave conflicting...

My enquiring mind is at a much simpler level. Which is, "I've still got my gall bladder. Does it need to stay in or come out?" And it's a simple question. And I get conflicting responses from the various specialists. One saying, "If it's shrunk and it's no longer operative, we'll leave it in. If it's full and flourishing, it'll come out, when you're strong enough." Now I've had a scan which tells me that it's healthy, flourishing. And they say, "Well, you know, it . . .". One then says, "Well, why does it have to come out?" And the other, another person says, "It has to come out because it could grow another gallstone." 

I said, "Well, you know, how big does a gallstone have to be?" "Well'.." "How many years? Because if it's going to take sixty years for the next gallstone to grow to that size, leave it in." I need a lot of persuading that it's in my best interest to take my gall bladder out. And that's when specialisms overlap or interface there's not necessarily good communications. I mean I have a stent fitted, which is to take out the kink, as you know. But there's debate as to whether that should be left in or taken out. The person who put it in said he could take it out. The surgeon who did the operation says, "Leave it in." And the stent man said, "Well, I've got to defer on this to the one who carried out the operation. That's her specialism." But it's a bit disconcerting when you think you get close to the specialist and there are different views being expressed, professional views on an informed basis.

He appreciates the care he got in ICU, HDU and on the ward, and would like to go back and thank...

My family are forever grateful and so am I, because of what they've said, that without that intensive care from really dedicated staff, life here on earth would be no more for me. I have subsequently been back to the Intensive Care ward. I felt as though I was being paraded actually by my family. They thought it would be good therapy. It would be good also for the nursing staff. But I felt that it was as much for the benefit of the nursing staff and my family, rather than for myself. I wasn't actually ready to go back and say thank you. It was convenient because I'd been called as an outpatient for some further scans, and so it was an opportunity to go and say thank you. To say thank you also to the staff in the Progressive Care unit, which is the next step from Intensive Care Unit in the hospital that I was in. And then to say thank you to the staff in the general ward. And perhaps that was the most delightful of experiences, sharing the joy. It was a changeover of shifts in the general ward of the hospital. And to see the sheer joy and delight of the two ward sisters who were changing over was a thrill, to be able to say thank you. Again it was a bit artificial. Genuine in my saying thank you, but artificial that, "Why am I here doing what I am doing? I'm not really ready for this. I feel I'm being rushed into saying thank you." In fact I'm going to have to go back when I'm in a much more clearer state in my life, to reinforce my genuine thank yous with another genuine, "Thank you so much indeed for all you have done for me." 

He is now able to talk about his hospital experience in the past tense and has become more...

But I'm talking in the past tense now. And that's another important thing, you do get to the point where you talk about that experience in the past tense. Grasp that opportunity when it comes your way, to talk about it in the past tense. It will come. For me it's taken five months before I start talking in the past tense. But once that happens, that's another important threshold that you cross.

What's it done to me? It's made me a much more patient and tolerant person. I regret that the society of which we are all members doesn't see people who have a physical need. They walk right through you. My experience of walking out with a stick on the high street is, "So you've got a stick. Do you really need a stick? Get out of my way". And it's made me much more sensitive about that. 

She would have liked to know more about how much to encourage her husband to do things when he...

I just feel that it would be valuable to families if they were supported a little bit more, or encouraged a little bit more when the patient's in hospital, to know what will be required of them when they get home. You can observe some of the things that the nurses do, but you don't know everything. And it would be nice if you were told just how far you could encourage your loved one when they come home. And just really get a few professional skills or, from the nursing staff as to, if you've to apply dressings or something like that. That would be a big help. I feel that that would have been a help to me, instead of me having to ask when the district nurse said she wouldn't be coming any more. That would have been a big help to me.

He advises people to set realistic goals for themselves and to take responsibility for their own...

If you are listening to what I have to say, clearly you've come out of the Intensive Care Unit and you're on the road to recovery. And that's good. The thing I have learnt is that it's a long road. There's no quick, easy fix. You've got to discipline yourself. You've got to tell yourself off. You've got to be prepared to be chastised by those nearest and dearest to you, who do it in a loving way, but for your benefit, for my benefit. To say, you know, "Unless you do this you will not have the following benefits." To set yourself realistic goals and challenges in a timescale which is meaningful. To remember that the world doesn't revolve around you, but you are part of, you're part of a family, of a community, of a culture, of a multi-culture. And you have a role to fulfil and if you look inwardly you're never going to fulfil that role. You belong to, if you want to be part of the world you've got to be prepared to contribute to the world. And much that your family can do for you, and all your friends, they can only do so much. You've got to own responsibility for your own well-being. I think that's the message I would wish to leave.