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Interview 31

Age at interview: 66
Brief Outline: He cares full-time for his wife, who was diagnosed with Crohn's disease in 1998. She has been admitted to ICU several times and recently had a stroke.
Background: Retired ambulance service manager, married with two adult children. Ethnic background/nationality: White British.

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He cares full-time for his wife, who was diagnosed with Crohn's disease in 1998. She has been admitted to ICU on several occasions and recently had a stroke. She was first admitted to ICU in 2002 and 2004 and since then because of bowel related problems. 

Since his wife's illnesses he has changed his daily routine so that he can look after her. His wife's recent stroke affected her speech, co-ordination and she is now also visually impaired. She was extremely weak and was gradually re-building her physical strength. She had lost a lot of confidence and couldn't be left on her own.

When his wife was in ICU he visited almost every afternoon, staying in ICU until the early hours of the morning. When she was in a general ward most recently, he visited daily so that he could feed her. Now she is back home, he looks after her full-time as well as the household tasks. Although he would like to have a short break from his caring responsibilities he feels that, because his wife needs a lot of care at the moment, including personal care, there is no one available or able to step in. He is unsure how well his wife will recover but feels that he has been able to care for her so well because of his love for her.  
 

Because his wife was too weak to feed herself and the nurses were too busy to feed each patient...

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They sent her straight down onto the main surgical ward and the first night, well first morning, she was there somebody came along and just plonked a bowl of water down in front of her and expected her to wash. And on this particular occasion she couldn't even lift her arm off the bed clothes let alone sit up in bed. 

She had got no energy left at all this time and eventually they took her into a side ward because they realised that she wasn't quite ready to go out onto the main ward. But even on the side ward, the people when the meals came round they would put it on the table and push it in front of the patient. And obviously she couldn't reach the food to eat it. One particular day after a couple of days, I happened to come along. It was still meal time and they used to let me creep in as long as I didn't make a noise, you know, I could go in out of visiting times. And I noticed that there was food all the way down the front of her and I asked her what had happened to her and she said, 'Well I was trying to get some food down but I can't reach. I can't pick the spoon up'. And she had got it all down her. So I started to feed her then and she was quite hungry. I told the nurses the problem and they said, 'We just haven't got time to individually feed everybody. So, you know, if you would like to come in, you are more then welcome to help feed her'.
 

 

His wife needed a lot of support and, in the rehabilitation unit, nurses had time to spend with...

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When I realised that things, she was going backwards, this is where I sort of decided that something drastic had got to happen otherwise she wasn't walking out of the hospital. Because by this time she still couldn't stand up, she still couldn't feed herself and she couldn't move herself around the bed. Wherever she was in the bed, that was it. If the bag leaked during the night it was just more or less left like that until the next morning. So I sort of did a little bit of shouting and moaning and groaning and eventually it was decided that they would try and find her a place on the rehabilitation unit. 

Eventually they found a place and she was transferred down to this unit. The differences between the two wards were one had time to spend with patients and the other didn't have time to spend with the patients. And this is what we found on these general wards, the surgical wards, medical wards, staff just hadn't got time to spend time with the patient. And those that had got the time are not qualified to cope with the situation. And all you get from them is 'that is not my job, you will have to wait for the nurses to come'. And we were waiting forever for a nurse to come sometimes. But on the rehabilitation unit straight away physiotherapy got involved with her, got her back onto her feet from there she progressed quite well with a Zimmer frame. And then walking sticks and then sort of twenty weeks later she came home. Still very, very weak but I think she was glad to come home any how out of the hospital. 

I think the thing is on the rehabilitation side they are there more to try and get people on their feet and walking. And really none of them had been particularly trained up in dealing with the medical, surgical problem. And the stoma nurse wasn't available to come down every time it needed doing, although she came down about every other day, she wasn't available on call all the time for that. But again there two or three nurses there who were interested in trying to help and when you sort of said, 'Do you know how to do it?' 'No, I have never been shown how to do it'. And I would turn round and let them stay on while I was doing it, and explain why I was doing it and the pros and cons of it. And then they were quite happy to go ahead and try themselves. So eventually you know we sorted some of the problems out. But it wasn't all the nurses. If you lost again the nurses that were helpful, you were sort of open to the elements of disaster. 
 

 

Because of problems with personal care, mobility and eyesight, he cares for his wife full time.

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When she came home, she could just about stand. She had just about enough energy to stand and walk a couple of feet and then she would be exhausted. And then we sort of devised a piece of equipment that she could wear at night. Because what was happening was, to start with when she was home we had to, I had to wake her up every two hours to empty the bag. And of course I wasn't getting any sleep because every two hours she had to empty the bag otherwise it would just pop off.

I mean she was building up a lot more than she was. But every so often something will happen somewhere and she will seem to lose a lot of that strength. This morning I found her laying in the conservatory and she had just got up and the next thing was she had collapsed on the floor. This is happening a few times. Now we have been to the doctor and we found out that she has got wax in the ears and we are thinking that this might be causing the loss of balance with her. But now we have got to wait until next week before we can get the nurses appointment to syringe it out. 

And has her co-ordination been coming back slowly? 

The co-ordination is coming back to a degree. But the problem now is the eyesight. The coordination with her hands is coming back, but unfortunately the eyes can't see what the hands are doing. And at first we said, 'Well move your head and have a look through your good eye', but that is not really solving the problem because you have still got the bad eye and it is still counteracting against the good eye, which is incidentally not a good eye, it was a bad eye originally. 
 

 

Because his wife is very weak, visually impaired and still has serious bowel problems, he looks...

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Because his wife is very weak, visually impaired and still has serious bowel problems, he looks...

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Husband' She is now registered, her vision is impaired, she has impaired vision and she is now registered for that. And the people from the Blind Society have come along with a few little gadgets that, i.e. for filling the cups up with water or a drink or tea or something. That helps her to do that but she can't do very much around the house at all at the moment. And this is getting her down as well because she was very house proud before. And now she just can't do it. 

Wife' I cant see enough. Thats the difference. I can't see it.

Have you had any support from anyone else?

Husband' We have had lots of people contacting us, calling in to see if they can help and that but the problem with a lot of these people are they haven't got access to various things but there is no manpower at the other end of it. It is all suggestions, you can do this, you can try that, you know, we can get you in touch with such and such ' Admiral nursing, get in touch with those, but when you get in touch with them there is not really very much they can do. You know you could do with somebody, [my wife] would need somebody with her all the time if I was to go away or something like that. She could never cope on her own. I have great difficulty in leaving her at all. And I am on tenterhooks wondering what am I going to find when I get back home. Even if I just go round to the shop and back again. 

Wife' I put a pillow in the microwave once and set it on fire. 

So really a carer would be good, someone who could come in on certain days'?

Husband' Well it would, but again you see it would take a long time for that carer to get to understand what [my wife] needs and'

Wife' Like fitting on the night bag. Most carers will have never seen anything like it before. 

Husband' It would be very difficult for me to leave her. At the moment we are getting a quite reasonable nights sleep now. At least we can say that and we are not absolutely exhausted. I mean with this night bag as we call it, it is giving us like six or eight hours sleep a night. And as I say occasionally I get woken up with her saying it is leaking, you know, but that is a very rare occasion now.
 

 

His wife is very dependent now and he feels that no one could understand her needs and problems...

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His wife is very dependent now and he feels that no one could understand her needs and problems...

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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. 
 

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