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Interview 37

Age at interview: 66
Brief Outline: His wife spent 49 days in ICU because of severe lung problems. After her illness, he became involved in helping improve services for ICU patients.
Background: Retired company director, married with two adult children. Ethnic background/nationality: White British.

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In 2003 his wife spent 49 days in ICU because of severe lung problems. He visited her every day, three times a day. He asked doctors if she could be involved in a clinical trial, and they agreed she would be eligible for it. This would mean she would be given a particular medication in the hope that her condition would improve. His daughter and son also visited, juggling visiting with work and children.

He described his wife's time in ICU as a roller coaster as she improved and deteriorated several times. She also had cardiac arrest. When she transferred to a general ward, she could do very little for herself and the ward staff were unable to cope with her needs. She transferred to a private hospital, where she received intensive physiotherapy and psychological support for ten days.

In total his wife spent seven weeks in hospital. When she came back home, he helped look after her full-time because she still needed a lot of physical and emotional support. He was disappointed at the lack of support for ICU patients in general wards and after hospital discharge and became involved in helping improve services for ICU patients. 

His wife is now fitter than she was before and they have re-evaluated their priorities. They have now moved to the country, spend more time with one another and with their children and grandchildren. 
 
 

Although, due to his work, he felt he knew all about intensive care units he was completely...

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I had been familiar with intensive care units because of my background. I have been involved in the health service all my working life and obviously I had been involved in them, I'd had them built, I knew of them, I'd set them up and so on and so forth. But that is very different from actually facing it firsthand. And if you talk to any of the consultants or nursing staff that work on them they think that it wouldn't faze them, yes it would if it was their own relatives. And it does. It is different, it is completely different. It is difficult to describe. You think because of your background you understand these things, you know what is going on, way back you do know what is going on and you are familiar with it, the machinery, the haemofiltration, all sorts of stuff. It wasn't strange to me. I knew what it was there for and what it did and all this sort of stuff you know, the oxygen level, saturation levels, I knew all that because of the work I'd done previously. So none of that was new to me, but when it is actually being done or someone you love dearly is on the receiving end of it, then it is very difficult. And you can see then how emotion can cloud judgements and it certainly did. It did, there's no doubt about it. 

I found it easy enough to talk to them [ICU staff] about what was going on and so on and so forth and they were very forthright with me about what to expect and what not to expect. And their words of wisdom were always 'the worst is yet to come', which was so true but you don't believe it at the time and it was. And I don't think, nothing can quite prepare you for your wife going into Intensive Care and the shock of that, no matter how much you know about the business, nothing can prepare you for that.
 

 

All her visitors found it distressing seeing his wife in ICU but he noticed that men and women...

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I think men are hard-wired differently to women, and I know that when friends visited her [wife], a lot of her friends would come with their husbands, who are good friends as well, and a lot of them would walk into the unit and see her there, this little tiny head completely surrounded with tubes and monitors and god knows what else and nothing else on show. And they would just break down in floods of tears and the men, their husbands, were uncomfortable. I mean one or two of them that we know extremely well tried to give her a hug and so on, and they were quite emotional about it. But they had more difficulty in dealing with that situation than the women and one very close friend, who has been a friend for over 30 years, whose wife and daughter visited, the daughter is a young lady, and they were both in floods of tears and he wouldn't go in. Didn't need to see her, 'She was here' he said, and he left it at that. 

But yes men do react differently to women in situations like that. There's no doubt about it. We perhaps, we shuffle down to the nurses and talk quietly to them in the corner. I don't know. 
 

 

His wife's time in ICU felt like a roller coaster because she kept improving and deteriorating,...

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My daughter and son visited regularly with me, I used to go three times a day, morning, afternoon and evening. And the long walk from the car park to the unit was absolutely dreadful because we might have left her in a dreadful state and wondered what we'd see when we got back there. Or we might have left in an extremely good state and be buoyed up with hope on the walk back to find she'd deteriorated again. So it really was a roller coaster. I know it is a word that everybody uses but I think it does describe the up and down all the time. And as you walked through the door of the unit, again it is fairly disturbing because as you go through the door of this particular unit you can see all the beds. And I was automatically focussing on the bed where my wife was. If the curtains were round, my heart sinks, you go cold and you want to walk away. It may be nothing more than simply that they are changing dressings or seeing to personal hygiene or something, but your heart sinks at that because you have seen the curtains round other beds and you know what has happened. So there was that. 

How did they [your son and daughter] react to the bad news, obviously it is a shock'?

Well one of shock and disbelief. Both of them dropped what they were doing and came over. One lives in [place name] and the other one in [place name]. My son's bank was very good with him and let him have as much time off as he needed. But seventy percent of the work was still coming at him, so he was bringing that to my house and working on that until the early hours of the morning. My daughter's husband was extremely good, how he looked after the twins and the two other children she's got, to give her carte blanche, a free rein. And so she was over every day. I mean without family it must be dreadful, to try to cope with that on your own. 
 

 

His grandchildren recorded messages for their grandmother and, when she heard them, the monitor...

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The other thing that actually hit the subconscious more than we realised was, at that point we had got four grandchildren, a grandson and granddaughter and a pair of twins. And the grandson and granddaughter were able to talk quite clearly by that time. And so they made a recorded message for their grandmother which we took in and played it to her when she was unconscious. But if you watched the monitor while it was played, deep down she recognised the voices somewhere because the monitor altered, as the nurses had said 'it alters when you come in'. She could sense that I was there. It didn't alter, depressingly, when my son and daughter were there, that doesn't say much [laughs]. And it altered when she heard the grandchildren's voices even though she was unconscious. 
 

 

He tried to give support and encouragement to a man who was losing hope for his critically ill son.

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While I was there in that there was a terrible situation I suppose with the parents of a young boy, a young boy in his teens, who were distraught because he appeared to be on his last legs and they were told to prepare themselves again for the worst. And we were talking, me and another man whose wife was in, we were talking with the parents in the visitors' kitchen, the relative's kitchen, and the parents were absolutely distraught. They were really broken by this news and they were on the point of giving up. And my advice to them was, whether it was good advice or not I don't know, was not to give up at all but to get in there, and particularly for the father to get hold of his son and tell him how much he loved him and needed him, and keep on doing it, day in and day out. And although he was unconscious, I believed with my wife something got through there because they said the monitors reflected a change, and continue to do that and never, never give up on him. 

And it might be very difficult for him to show his emotions and feelings like that, but nevertheless to do it because he was his son and he needed his support, as much as he needed his mother's support and his dad just couldn't be distant from it. And fortunately the son survived and was discharged and is fit and well from what I know. It wasn't because of what I said at all, it can't be because that was medical nursing skill that did that and the boys own determination I presume. But nevertheless the relatives, if they have got hope, I am sure that hope and expectation can have an effect on the patient's recovery. I am sure it can, a very positive effect, and therefore they must not ever give up or be scared or frightened or embarrassed in actually telling an unconscious patient how much they mean to them. Even in public, it doesn't matter.
 

 

After one particularly traumatic day at the hospital, he was in such a turmoil that receiving an...

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She [wife] arrested in my arms. I was going out, and agonising about how you're going to tell your children, though they're grown up adults, about that. And when do you tell them and so forth and the effect that inconsequential phone calls could have on you when you get home that night, and you've made the two phone calls that you dread ever having to make to your son and daughter and the options open to you then as I saw it. Because it was around 10 o'clock at night, are either to drink myself silly or go to bed and hope I sleep and wake up in the morning and see what was happening then. And so I did the latter. 

Because I had forgotten in that dreadful turmoil to ring somebody about my wife's condition, that somebody, I had switched the phone off, the house phone off because we have the business line, when I went to bed that somebody got the business line and rang me at about 11 o'clock that night to find out what was happening. And I should have switched that line off as well. But people do these things because they are concerned, they are not intending to be intrusive, but it can be so destroying when it happens. It can flatten you because you are pretty low at the time. But that is the way it is, you can't expect people to anticipate this and to understand it. That is the way it is. These things hit you harder than how they would normally.
 

 

Doctors were happy to answer all his questions and phoned him to explain exactly what was wrong...

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What kind of questions did you ask them [doctors]? 

A number were related to the medical treatment because I mean one example was she arrested and when she recovered from that I wanted to know what had caused that. Her blood chemistry, potassium levels were wrong. And I wanted to know why they were wrong because they did a blood analysis regularly and the nurses were very good. They used to go through them with me. And according to the records her potassium levels had been within normal limits so why should this happen. Why should she have an arrest and have to go on another drug. And it was that sort of thing that I wanted to know about. And how long she would be on these particular medicines for. She developed a raging infection which, initially, could not be identified. I mean swabs were taken and microbiology was involved but of course she was on an all embracing antibiotic when she went in because of the lung infection she had got, so that was suppressing anything. And I wanted to know why it was that microbiology couldn't pick up what the root infection was because of the antibiotics she was on to keep infection to a minimum, they were suppressing it. And I was reassured that at some point or other this little microbe would rear its head and go to the parapet it would have it and, of course, it did. 

And they were delighted to ring me up and tell me, 'We know what it is. We have got it' and of course antibiotics were prescribed and the infection was killed off. So it was that sort of thing that I was asking them and also she had to have haemofiltration. I mean she was, the euphemistic call it 'well perfused', she was oedematous really. She had to be haemofiltrated. And of course being me I wanted to know what had gone on and why this was happening to her body and they went to great pains, the doctors, to explain what had happened to her body system that had caused this sort of problem and how it's dealt with. So they were very good in explaining all that to me, but you see I would write in this diary, why has this happened, why has that happened and I was able to go and ask them and they didn't mind at all. They were only too happy to explain to me what they knew.
 

 

The nurses washed his wife's hair and did whatever they could to make her comfortable, as well as...

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The thing that struck me about this particular unit was that, despite all of this roller coaster business, high flying emotions, and the periods of depression that would hit you, was the quality of the staff on the unit. I think but for them, I and many of the other relatives with wives, husbands, children in the unit, would probably have gone under. They were quite remarkable as a team and as individuals. And their support, their willingness to talk, their willingness to support you and indeed prop you up at times, was quite remarkable. The doctors themselves were particularly good as well in that they were quite open and honest and explained what was going on, what they didn't know, what they knew they couldn't control. But the thing that struck me about it was the honesty and obvious integrity of the team there to do what they thought was best both for the patients and the relatives. They gave this support to all of us. 

All the team in the unit are working in a goldfish bowl. I looked around when I was there and every bed had relatives around it and the staff were doing their duty, their work, their skilled work under the eyes of relatives who had nothing else to do because the patients were unconscious except to sit and watch them and perhaps talk to them. And these poor staff are working in a goldfish bowl all the time, and from what I saw there was an incredible amount of professionalism and care, what I would describe as good basic nursing care that you don't see a lot of these days. I mean within a few days of my wife being there I was almost assaulted by the nursing team to bring in her smellies. I had no idea what they meant until it was explained to me it was her perfumes and make up. And they gave me a list of what to bring in, and so I had to bring everything in. Anyway they wanted it because they wanted to look after her although she was totally unconscious. And they did, they washed her hair, did her nails. They did her eyes and they just did everything for her. And they made her look beautiful during this particularly difficult phase. And in the 49 nights she was there, there wasn't any indication whatsoever of any bed sores, nothing like that at all. There again that is a great testament to them, because she was absolutely supine all the time. Nevertheless there was good physiotherapy, good nursing care and so she came out of that experience in that sense whole and complete. I mean she wasn't physically whole and complete, she wasn't psychologically whole and complete, but from the care that she got she came out complete and I think that is a great testament to them, what they did, and the patience they showed and the absolute devotion. And it wasn't just for the wife, it was everybody. It was an extremely good unit. 
 

 

He kept a diary so he could gain distance from what was happening to his wife and see if there...

He kept a diary so he could gain distance from what was happening to his wife and see if there...

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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.
 

After several bureaucratic problems, he was able to transfer his wife to a private hospital,...

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When she was transferred to the general ward it was like chalk and cheese. It is absolutely unbelievable. And you are so elated that she is coming out of Intensive Care, that she is on the road to recovery. That is all you can think of. And then you go to the general ward and there isn't the level of nursing care. There is ignorance, in the true sense of the word, about the condition of Intensive Care patients. There is not the level of medical cover for the patient. The mix of patients is so dramatically different that it can be off putting and there are articles written on this, there is evidence to prove that this is the situation. And it really is. 

And people leaving Intensive Care, I mean the evidence is there, even after seven days the amount of muscle loss that people have is incredible and after 49 nights, I mean she was physically a wreck, she couldn't walk or do anything. There was no proper physiotherapy on the general ward, she was given a Zimmer frame with no instructions, no support how to use it. There was no assistance to get her to the bathroom or anything like that at all. She had to struggle out of bed to sit in a chair if she wanted to because she was encouraged to get out of the bed. There wasn't any visit from the physiotherapist except for a flying visit which had to be organised. And there was no psychological input into trying to guide her through from the transition problems that she was facing after being in Intensive Care. And the enormous amount of sedative drugs that she'd been on which do affect them, which we now know. So there was none of that at all in the general ward and I think that is a fair criticism of most hospitals up and down the country, talking to patient groups about this, the transition between the two is so dramatic it can have very serious consequences in terms of patient recovery. And it was the situation there to the extent that I arranged for my wife to be moved out of there fairly quickly. 

But before I could do that, it was unbelievable the hurdles I had to leap through. She was transferred to the general ward under the care of a renal physician. She was in Intensive Care for respiratory problems. So to a simple logical mind she should have been transferred to a respiratory physician. But no, because on the day she came through A & E there was a renal physician on take and she went back to him. The renal physician had done ward rounds about two hours before my wife was admitted to the general ward and didn't come back for two days. The juniors were just running around like chickens with their heads cut off. So I couldn't get the renal physician back to check her out, anyway she said it is not my area of expertise, you need to speak to the respiratory physicians. So I tracked down the respiratory physician and got one of the nurses in critical care to lean on the respiratory physician to come and see her, who did a couple of days later. And as far as he was concerned, from a lung point of view, she was fine and she could go home. But the renal physician would have to clear it. So basically we got the renal physician in, so she cleared it and my wife was transferred to a private facility which provided physiotherapy and psychology. And the physiotherapy was geared particularly to functional respiration to get her back to normal. So she was there for ten days being treated privately. 
 

 

He felt strongly about there being more support for ICU patients, including ICU follow-up clinics...

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On her return home she was still physically weak, psychologically she was getting better but physically still very weak. The general practitioners that we have are extremely good but of course they are out of their depths because GPs see very few of these cases and their usual reply is 'you have been very ill, what do you expect to be like?' So although he tried to be supportive he didn't have the knowledge and experience to be supportive and I wanted a 'disabled' car parking sticker so I could take her shopping. Can't get one. Because she is not disabled, she has not been disabled for 12 months with a permanent disability, so she can't get one. The rules don't allow it. The rules don't allow for temporary adaptations to your home. So I had to take her upstairs, morning, noon and night, to get her in and out of the bath, to go to the loo, help her go to bed etc. etc. There was no means of getting any support, albeit temporary, from Social Services to help in that area. So these are problems that most people have. 

The NHS isn't really up to dealing with these issues, it isn't up to dealing with patients coming out of Intensive Care and those were the major issues that I found were the problems facing me when she came home. And I think what is lost in the whole exercise here is that patient recovery following critical care depends very much on the care they are given by their relatives at home. Because there isn't the infrastructure in place by the NHS to help in that area at all. So we carry that burden and we carry it out willingly. And we want to do it because we believe in it and we love the person involved, so we are prepared to do it. 

But nothing can prepare you for the effect of what it is like when they come out. And there is no support at all. You have a physical and mental wreck, to be very crude about it, on your hands and a home that isn't suited for it. And there is no support there at all. And that is the biggest hardship and problem. 

I mean the biggest problem that we all face is the life after critical care and that is one or two years after, it is not just a matter of a few days or a few weeks, it is one or two years after critical care. And that is the problem we all face once we get over critical care.
 

 

Since his wife's illness, he wanted to work less, live somewhere quieter and spend more time with...

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It made me take stock of what I was doing because I was indulging myself by continuing to work and I realised that there is more to life than that. And you can have as much pleasure and satisfaction and probably give more if you just take stock of what you are doing and be sensible about it. And that is what we did and the whole thing sort of came to a head early this year and we decided that we would move, sell the house and move out into the country, which we have done. 

We have been going out since we were 15, so we are permanently joined at the hip and I think to say we got closer, perhaps no, that is not true. I don't think we could have got any closer. I think what it made me do was realise that perhaps you do, however close you are, you do take advantage of each other's generosity in married life and I was perhaps taking too much advantage and my wife didn't realise in terms of indulging myself. Work at that point was a hobby. It was something I wanted to do and that is what I was doing and it was, when I look back, it was costing me in terms of time with my wife and children but I didn't realise at the time. Nobody realised at the time. And when this situation occurs you take stock, you do balance things out. And you think I am being selfish there, I don't need to do that and also it does throw into sharp focus your own mortality, which you never think about and my word you really do then. 

And you think about it then, that I am going to take every advantage of every day I have got left now with her. And we do. I mean things like, I would never go shopping before for women's clothes, never. Now I don't moan as much about it. I go but I would never have gone before. And I want to be with her more because I don't know how long I have got her for, having been there to the edge and then come back. So you do, I think it does put that sort of thing in perspective very clearly and you do take more stock of what you're doing and why you're doing it. And you think perhaps I could change and perhaps we could have a much more beneficial life if we did this, so that is what we have done. 

And you mentioned that you see more of your children now as well? 

Yes we have a routine now where we see my daughter's children once a week. My wife goes up there, and this is rather funny, she does their ironing and I do odd jobs. And they range from a variety of things, we'll not go into that, fixing the loo seat and things like that, that have been broken for weeks because her husband's too busy to do it. So we replaced that. So we do that once a week. That is a regular routine. We're now into the school pantomimes and festivities, so we're up twice a week now. And my son who has just had his second son, we tend to go there every third, every second or third weekend and stay over there because he is in [place name]. And stay over there so they can have time to go out and my wife gets up and feeds the baby at night. And she loves it. She just thinks it is wonderful. Everyone else is dead on their feet and she is there feeding the baby at 3 o'clock in the morning and she thinks it is wonderful. So we do that. And I think that, had this not happened, I would have been so busy, 'Oh I can't be bothered, I have got this to do' and I wouldn't have done it and used work as an excuse. 
 

 

Get as much support as possible once the ill person is back home, from GPs, hospital doctors and...

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And is there any message or advice you would give to someone whose family member is now back home and needing a lot of care?

They have got to pressurise the general practitioner. They have got to pressurize the consultants in Intensive Care. They have got to pressurise the hospital where the critical care unit is that they were nursed in, to provide a proper level of support in the community. That might be in the form of a follow up clinic, with proper follow up, it might be in the form of home visits from the physiotherapist, not simply a book of exercises, psychological input which again might be home visits as opposed to counselling on the telephone. And the GP to understand what patients go through when they leave Intensive Care. And the GPs have a very important role to play in this, but they do back off because they don't know a lot about it. And we have great understanding why GP's will not get more involved in understanding a bit about post Intensive Care problems. 
 

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