Intensive care: Experiences of family & friends

I mean at the moment I do literally all the cooking and everything. My wife will come out and say, 'Can I help you?' and I try and give her little bits and pieces that I know she can cope with, but to leave her, to put the electric plates on the cooker, no she is not safe in doing that. Like she said there was one time she put a pillow into the microwave. And we were standing in the kitchen talking at the time and I could smell this smell and didn't think anything of it. And then suddenly my eyes went to the microwave and thought what has she got the microwave on for. And then of course I opened it and flames came out from the pillow. 

Would you like, if somebody were available, would you like them to come in and help? Or you would prefer to do it yourself? 

Well it would be very nice to get a complete break away from her, say for like three or four days, but the only trouble would be there is, that the person that would replace me would have to be able to cope with things the way I cope with them with her. And I don't think anybody would be up to that type of standard if you know what I mean. And I would then start worrying. If I knew everything wasn't so, then I would then start worrying and it would be pointless me going anywhere. But at the moment I feel that it is me that should be looking after her because I know the ins and outs of her problems. I know what she needs and what she wants and, you know, her likes and dislikes. And it is easier for me to do it rather than try and explain to somebody else. 

All I can say is that if you find your health is suffering as a result of it then you have got to seek help. Where you seek the help from I just don't know because the way things look outside beyond all these organisations and that, they are willing to help, but they don't have the help that you actually really need to cope with your problem. 

And the help that you would really need, you feel they wouldn't understand all your wife's needs? 

This is the problem. If she was in, shall I say, a nursing home, with say six patients and there was three nurses to six patients then they would get to know everything, her problems, and they would help her. But there is very few nursing homes in the country. I would go as far as to say there is probably not a nursing homes left in the country that would have one nurse to two patients to look after. So even putting her into a nursing home for a week to give me a break, they still wouldn't be able to cope with the problems she has got. They wouldn't physically have the time to be able to do it. And as a result of not having the time to do it, then my wife's health would suffer dramatically as a result of it. And I wouldn't want to put her into that position. This is the problem you have got, and although there are plenty of organisations who on paper you know could help, when it gets down to the real practicalities of it, the practical side of it, there is very little help out there. 
 

But over the weeks, well over the days, he [husband] started to get really, really poorly. And I called his GP and asked, you know, to check him over because he'd been in hospital and he hadn't been well and asked about the tablets, etc. And one particular one that I hadn't' I didn't know what it was' it was called risperidone. And I asked what was that was for and the GP said, 'Look it's a very good drug for the trauma that [your husband] had been under'. At this point [my husband] was having eight milligrams a day of this particular drug. I don't know what it was for and I didn't know why he had to take it because there was no leaflet actually in the box when I brought them home. And so I didn't' I hadn't got a clue. So there I am giving him these tablets unbeknown to me, I'm actually poisoning him. 

Anyway suddenly he started to' he had this stance about him'he wasn't very strong on his legs anyway. And suddenly his knees started to bend and his arms sort of came up to sort of head height with his hands in front, stiff. And his eyes were bulging out and pushing his glasses off his head. 

So I had to get hold of the GP. And he my husband was in quite a state actually. So he had to be admitted to another hospital, a third hospital, where this risperidone drug was, they took two milligrams off on the Friday. He was taken in on a Friday, a Friday evening, where they took two milligrams off on the Friday. They took another two milligrams off on the Saturday, and they took two milligrams off on the Sunday and they took another two milligrams off on the Monday. So he was completely off this drug called risperidone. I then learned that risperidone is for acute schizophrenia and it's for paranoia.

And apparently the ICU notes that were sent to the main hospital, it was that this drug was to be checked daily. He should never have been on it after he came out of ICU. You know after say maybe a week, once he'd stabilised, I think maybe he should've been taken off then. But they just didn't. They carried on with them. And they gave me six weeks worth and said, 'He must finish the course', along with you know two lots of strong antibiotics. So his mind was gone really and' to be honest I was terrified this was going to permanent. I'm just touching wood and whistling that it's not permanent. He's back at work and he's fine. But that was through more luck than judgement. And I am going to blow my own trumpet here because I think the only reason my husband is still here is because I queried the tablets.

I think the strangest thing maybe is that I actually had to phone the GP and ask him to come and see [my husband] after he'd come out of hospital and I'm just a bit surprised that the GPs are not informed. 
 

I felt quite angry because afterwards all the support and all the attention was for my Mum. And I know she went through all the horrible side of things but for the family it is more emotional and you are there every day and see, you are very up and down, you see, and I personally feel that more support is needed for the family. Mum went for a follow-up and I went with her because I felt I needed something. 

But there wasn't anything. You know whether it is just someone to' the doctors and the nurses are lovely and they give you as much information as they can. But yes, I think you need some support, you need someone to say yes we have been through this and that is quite normal or just to listen to you. It is very hard, even though my husband is supportive, it is still a very difficult time for you and probably somebody who has been through it or who knows what they are talking about to say, 'That is quite normal to feel like'' 

Like I say, me feeling angry, you know, is that a normal feeling for people to feel like that or am I a really awful daughter for feeling jealous and angry with my Mum for putting me through that. So I think there could be more for the actual relative. It is all patient, everyone is focused on the patient, to get them well and through, which of course is natural. But you do kind of get a bit pushed out and a lot of waiting in the relatives' room, not knowing what is going on. You know alarms have gone off, you are put in the relatives room and you can sit there for two or three hours not knowing what is happening and that is very difficult as well. 

Did you talk to any other people who were in the relatives' room or'? 

There was never anybody else in there when we were there. The gentleman opposite, on the rotating bed, kind of got a bit of relationship going with his wife. Just saying hello and that and how is he doing and how is my Mum doing. Whenever we were in the relatives' room, we were generally on our own. As I say the nurses were very good, you would go in and they would give you an update and tell you everything. But they were obviously concentrating on the patient and I have always felt since being there, I think more should be done for the relatives. Whether the patients survive or not because there is still almost a feeling of grief even if they do survive. You have still gone through a life changing, and luckily for me, my Mum is virtually back to normal. It could have been a completely different story, you know my life could have been changed completely, and it is a very emotional time. So yes, I think there could be more for relatives.