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She focussed only on her husband's survival and asked other relatives to focus their prayers and energy on him rather than trying to support her.
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Because his heart had stopped and because of what had been happening, he could be brain damaged when they eventually brought him round.
And to be totally honest you don't actually think of that. I know our brother-in-law was there, and he said, “How do you feel?” And I said, “Well that is just something I will cope with when we get to that stage.” You live very much for the moment, not what is going to happen in six months time. You know it was just a question of pulling him out of this.
I know I got used to it the first night, I had got used to him fitting, but then his brother just sort of started crying, so he couldn't cope when he started to go, whereas I was okay. And I went, “It is okay they will just do this, it is all right, don't worry,” and you do pick up on that and it does. The one thing I will say though that is strange and it is not being a martyr or anything like that, is people were very concerned for me and I didn't want them to be. I kept saying, “No all energy, all that, everything has to go, pray to whichever God you believe in, the sun, the moon, anything, but all your energy has to go on getting him out of it. I am okay.” And of course they are saying, “We can't do anything for him, so we can help you”. And I was saying “I know but I don't want you to think about me.” That is not being a martyr or anything. That is just something that at the time I felt very strongly about. They had to be there for him. Not for me. I understand now their point of view but at the time it was very much - “No, please concentrate on my husband, don't concentrate on me. I will cope. If I crack at some point, I crack, and then you can help me but while I am coping …” |
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She felt that the men in her family found it harder to see her husband so ill, maybe because he had always been so outgoing.
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The men that visited couldn't cope. The women were fine. They would come in and talk to him as if he was normal and things, whereas the men were like, “No I am out of here. I can't do this”. And it was the men that sort of walked out and just started crying and things. They really couldn't handle it as well.
And you had your family around you. Did you feel that there was a lot of support from them? Or often you were supporting them?
Both. Both. My family live up in [place name]. They did come down to see him and to see me and they were here for about an hour. They came down on the train and then went all the way back on the train and it is a lot. But it goes back to - the females, family or friends, coped a lot better than the males did. I think it was, maybe because my husband is a man and it could be happening to them or what, or it is just my husband is very life and soul and very outgoing and all of a sudden to see him laying there, wired up on drips and they really couldn't cope. |
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She never learnt why her husband got so ill so quickly, but felt ICU doctors always gave information and updates about his illness honestly and openly.
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But I can say without the staff of Intensive Care I probably wouldn't have coped. They were superb and it is such a vocation because it can't have been easy, having me hanging round the bed for 20 hours a day and just going in and getting some sleep. But they were absolutely amazing.
What kind of information, support, how were they amazing?
They told me everything. I knew everything from every bleep because he was wired up. At one point I think he had nine or ten drips in and his heart monitor and the ventilator, which is very scary anyway. Because the best way I can describe it is sounding Darth Vader. And they explained everything they were doing. When they were taking bloods to check for things and what tests they were doing and the consultant spoke to me every day while I was there to explain what the next step was, and what it could be, and what it wasn't. I mean, every step of the way they did keep me informed. And any questions they answered.
What were your main questions at the time. Can you remember or…is it a blur?
No there were various things. It is like he had been fitting or having seizures as they say and they just had to keep him further sedated to try and stop those to begin with while the anti fitting drug kicked in. And it was things that I would ask like, “Well is he actually fitting underneath what we can see inside”, and things like that and the doctor explained that, “No he hasn't had muscle relaxants, so if we didn't see him fitting he wasn't fitting” and things. And just, as I said, the actual diagnosis isn't paramount at that point. |
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She didn't ask doctors why her husband was so ill because all she needed to know was whether he'd live. She and his doctors still don't know why he became critically ill.
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So they gave me a room and it was quite a strange situation because we didn't know what was wrong with him and to this day they still don't know what it was.
But they were all very, very honest with me. The consultant that saw him mostly said, just kept saying, “We don't know. I can tell you what it is not, because we have done tests, but I can't actually tell you what it is”. I never asked for a prognosis or a diagnosis, or is he going to be all right or anything because I think when they are in that situation, you know that everyone is doing as much as they can, but you know sort of having me there, saying well is he going to be all right, is he going to live and things, doesn't actually help. And I didn't need a diagnosis by that point. I just wanted him to get better. |
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She has a good memory and, even though nurses offered to keep a diary for her and her partner, they decided they didn't really need one.
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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. |
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She did everything she could in the hope her husband would recover, including praying and making deals with God of what she'd do if her prayers were answered.
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Did you pray at this time as well or is it not something you usually do?
Yes. Its, you pray, you make deals with God. You do everything. As I said you know it is a question of whether you believe in God, the sun, the moon, the stars, it is anything that will get you through this. I didn't go to a specific area in the hospital to do it, but I included, you know, I did everything that you could, you know, “God, I promise I will do this. Just get him through this and we will cope.” But I am quite sure an awful lot of people do that in those situations. |
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At his follow-up appointment, her husband was shown around the ICU and his questions were answered, which was reassuring because he couldn't remember anything of his time there.
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The hospital my husband was in were superb. They were there. They do, the Intensive Care do a follow up clinic. They rang, they gave me numbers that I can ring at any time, because he was in there for so long and apparently it is very common when you are in this … I think he was in there for thirteen days, but it is very common for there to be problems. They arranged, because my husband had no memory of being in there, they arranged for us to go, and for him to actually see intensive care and explain the machinery and what had happened and things like that. So no I don't think so. We are quite self-sufficient people. Now whether that had any effect, but I can't see that anybody could have done anything more for us.
And when you had the numbers that you could ring, was that when you left the hospital?
Yes.
So you could ring, even if you were at home and you had questions?
Yes. It was at home they contacted.
And how long after your husband came home was the follow-up appointment?
I don't know.
That is okay. And did you find the follow up appointment helpful for you in any way? Or was it mainly for your husband?
No. It was very helpful because things he was bringing up, they are going 'no that is normal, a lot of people do that, a lot of people do that', which obviously with never having anything to do with intensive care, you don't know. And I know after the first meeting, my husband said, “Well I am not mad, that nothing I did was out of the ordinary or strange of bizarre”, which was very important. And it helped me because I also knew that was okay, that was normal, that people do behave like that. |
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When her husband first came back home she used to check that he was still breathing while he was asleep and still phones him regularly if he's away too long.
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He could do all the normal washing, dressing, things like that.
He could walk upstairs could he?
Yes. He couldn't use his left side at all because he had to wait for that to heal and his tracheotomy hadn't healed either. And he could do the everyday things but he wasn't allowed to hoover or anything, you know things like that. And it would limit what you do that you can… because it was pulling this, and I think that the whole psychological thing is probably greater than the physical because all the time, and I think I did his head in, I used to wake up continually through the night clutching his chest to make sure he was still breathing. You know and things like that. Because all of a sudden you do get institutionalised because you know that there are people that are there and they are going to look after it and it is monitored and you will know. And then all of a sudden that is gone and you are on your own.
And you mentioned that when your husband first came home you were concerned and quite scared. Did that wear off with time?
Yes. But it does take quite a long time. You know. It takes a long time, you are… and you know, I mean, even now if he goes out on one of his walks or something, he has to take the mobile. And if he is longer than I think he should be I always ring him and you know things like that. Because you are, and I think I absolutely do his head in, because I am very much, I have to speak to him five times a day, you know, things like that, 'are you all right' and things like that. But I am not clutching his chest any more making, I am not sure what I was going to do if he wasn't breathing, but you do have these fears, because you are institutionalised with the hospital because everything is there. And when you come home, and we live surrounded by fields, so you are, you know, you are like 'well what is going to happen'… |
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When their car was written off she was able to keep it in perspective because it was insignificant compared to her husband's critical illness.
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Has the whole experience, some people have mentioned this, made you look at life differently. Or you are back to as you were before?
No. You do look at life very differently. Because, I think you appreciate life much more. And the little silly things just don't bother you any more. I know sort of five days after he came out of hospital, our car was parked in a lay by outside in some friends house and somebody wrote it off. And it was just oh well. I mean you like to think that that is how you would have reacted six months before. But this was 'there you go, it doesn't really matter does it. It is a lump of metal'. And you do get very much like that. 'Well they can't kill me for it.' And you know all the minutiae of life that you get bogged down in, all of a sudden isn't important. |
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Accept support, ask questions if you need information and be aware that when the patient comes home there will be good and bad days.
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I would say put your trust in the staff because they are superb. Don't be afraid to ask anything, because they don't mind answering your questions and even something which is silly, take the fear out of it. Don't be as frightened because there is this massive stigma when you say Intensive Care, or ventilator or life support machine. Just that they are doing it because they want whoever to get better and also if possible get rid of all your everyday life things. Pass them over to somebody because that is the biggest help, because then you can concentrate on the job in hand, not worrying about feeding the cat. You know things like that, if it is at all possible. Let somebody else take care of all that minutiae for you.
And how about when someone comes home after being in Intensive Care? Is there any message or advice you could give to them then?
Try if at all possible to make the person that has been in the hospital realise that just because they have come home doesn't mean that there has been a magic switch to say now they are well. It is fine to feel tired or lousy or anything and to recuperate, and just be there for them. |
