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Heart failure

What carers think

We talked to some of the husbands and wives of people with heart failure. They talked about the changes they had noticed in their partner and the ways in which heart failure had affected them. 

A woman whose husband had had a stroke and heart attack within two months of each other, described how his illness had affected their two grown up children. She felt that their daughter was practical and down-to-earth from the beginning, but that her son had found it hard to cope with the implications of his father's illness. She said that her husband got upset if she went anywhere without him because he was frightened something would happen to her. One of her friends told her that she should think about herself more and insist on leaving him on his own, but she didn't like doing it. She was told by her daughter not to wait hand and foot on her husband because it would make him less independent. She described how she had changed since her husband's illness from being a negative person to someone who looked at things more positively and wanted to get on with life.

 

Describes how her son and daughter responded differently to their father's illness.

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Age at interview: 61
Sex: Female
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If he plays up, she says, "He's playing up," he gets sort of obnoxious with her or something, and she'll tell him off. She really gets cross and she'll say, "Now listen Dad don't be so stupid,' you know and she puts him straight and he comes, he acts normally then, he doesn't start playing 'oh-woe-is-me' sort of thing because she won't have it.  

My son, my son is different, he, he is what, he's a very happy person, he's very happy with his life, and I think it has all been an awful shock for him because he finds it very difficult to come to terms with. He thought that given time, his father would be his normal self, and it's taken him an awful long time to realise that he may not be the same person that he was before. That he will be as he is now, he may stay like that, or he could even get worse. And it's, he's finding it very difficult to come to terms with that. My daughter has actually spoken to my son and explained all this to him, and she said when she does do this, she notices that he wants to cut the conversation, he doesn't want to know it's like a brick wall goes down. So I think my son is having problems at the moment. He's better than he was, and he talks to his dad okay on the phone quite a lot, they come and see him.

 

Describes how her husband gets anxious whenever she goes out so she takes him with her.

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Age at interview: 61
Sex: Female
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Well that's changed enormously, I mean, well I was very, I was a very spoiled person, [husband] has always allowed me to do my own thing, I've gone to work, I've gone and done, socially I've always gone line-dancing on my own and swimming with my friends, now I can't, that's completely gone, he has to come with me. And I'm trying to get to the bottom of this, and I think it's because, he says it's because he worries about me - example, go to the vets this morning it's only what 10 minutes away, I'm actually away probably 40 minutes and he's worried that something is going to happen to me on the way, and I don't, I don't understand this but he's, I suppose it's his security thing, and I'll give you an example, and it's quite funny really, but I was invited to go and see 'Rocky Horror Show' with my friend and he was horrified when I mentioned this - it's not that long ago, because up to that point he'd come everywhere with me, even line-dancing he sits and watches and whatever. And I said to my friend I don't think he's going to let me go, and she said, 'That's ridiculous, he's got to let you go! Tell him he can come and sit over with my husband and you can come, he'll be looked after,' I said, "I don't think it's him being looked after that worries him it's, he doesn't want me to go without him," but he wouldn't come to the Rocky Horror Show anyway. So she said, "Well you're coming, that's it tell him you're coming." So I thought, 'Mmm...', so I told him I was going and he was horrified, he's still horrified but he said, "Oh well if you have to, you have to." My daughter spoke to him and said, "Dad you've got to let Mum go this is silly." So he said, 'Alright'...

And I came home, we had a wonderful time, and he was okay but he still doesn't like me going off without him. But at least that was one example where he, I suppose I said, "I'm going that's it," it's partly me because I feel mean, if I say "Well I'm going and you're not coming with me," I couldn't do that, my friend doesn't understand that she says, "You should, you should put your foot down," but I can't do it, it's silly but I feel really nasty if I do! So I tend to give in and say, 'Oh come with me then.' 

 

Her daughter told her that she was doing too much for her husband.

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Age at interview: 61
Sex: Female
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My daughter is very good. She says that I should, a good thing actually and I'm very aware of this she said to me, because he's got into the habit of if he wants a drink of water and I've given him his tablets, he'll say, "My glass is empty," and I've actually gone over and got the glass and come out in the kitchen and filled it up and given it to him, and she saw me one day when she was here one weekend and she said, "Mother, you mustn't do that!" I said, "Why not?" So she said, "Because you're making him an invalid," she says, "He's quite capable of getting up and going to get a glass of water and the more you do that and the more you do things the worse you'll make him." And I thought about it, and I thought she's right, she is.  

And now, sometimes I just say, "No, you know where the water is, go and get it." And he gets quite nasty at times, he gets quite cross if I won't do it. But sometimes I don't say anything, I just sit here, and eventually he sort of grabs his glass, storms back to the kitchen gets his glass of water! [laughs]. But... that's one thing you have to be very aware of that you can actually make people worse, by running around after them and doing too much. I think that's almost as bad as, I don't know it's, well you just make them worse, you make them, you will make them an invalid eventually. 

 

Her husband's illness has made her a stronger more positive person.

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Age at interview: 61
Sex: Female
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And I'm a lot more, whereas before - it's very strange but I used to be very negative - but since all this has happened I've become very positive and I don't know why. It's very strange, because my sister always used to get cross with me and say how negative I was, and yet all of a sudden it's like my personality has changed, it's very weird, and I think it's because I've had to and I think it's silly me sitting around feeling sorry for him and me, you know it's tough, it's life, we've got to get on with it.

And in a way it's made you stronger in a way?

It has actually yes I think it has. And I've got to do it for him anyway, so it's no good, it's no good for him is it?

A man whose wife had had a heart attack followed by bypass surgery said that he had needed support and help from medical staff in the community when he first brought his wife home from hospital because she was still in pain. He thought there should be an organised system of follow-up care at home for people like his wife. He still felt anxious about his wife's health and whether she would collapse while he was out walking the dogs and said that some kind of psychological back-up would be very helpful. He described how he needed to meet and talk to others, but he was aware that his wife found it difficult to leave the house and so could become isolated. As a retired hydraulics engineer he felt he understood his wife's heart condition and the implications of it, and tried to face it pragmatically.
 

Talks about his need for more back-up support at home to help him and his wife cope with her...

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Age at interview: 72
Sex: Male
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Brought her home with a letter to take to the doctor, which is usual procedure - I took that into the doctor the next day expecting the doctor to come round and see us - nothing happened, and she was still quite poorly at this stage, I know she'd come out of hospital but she was still quite poorly, she couldn't get upstairs or do things like that you know, in a lot of pain.  

So I called the doctor out eventually - I would have thought that the doctor would have come on his own volition knowing that that - but he didn't, eventually the doctor came, not our own doctor but a doctor came out, and he looked at the notes and the letter and he said, 'Well I can't do anything for you, you'll have to wait till you go to hospital to see the cardiologist in hospital.'  

All the way through this procedure nobody had ever come to me, apart from the children, obviously and friends, nobody in the hospital or anywhere like that except for one sister and the nurses, ever came to me and spoke to me about it, 'How are you coping? How are you getting on?' Nobody offered any sort of back-up or any sort of help to get you through it, you know, they just accepted that you were somebody who just came to see as a visitor you know, well here she is you know. Nobody ever said, except for one night, the night sister came up to me and sat down by the side of me, and she talked for about half an hour I should think, telling me all the things that they'd done, and what they hadn't done, and what could happen and what couldn't happen, and that was the first time I had had anybody talk to me, so you do feel a bit alone.

Anyway we got home and eventually we went to the hospital, after..the appointment must have been a fortnight after she came home so we were really in no-mans-land during that period! You're here, you've got a patient with you, your wife, whose been seriously ill, and there is nobody there to back you up, there's nobody there even to give you a phone call and say, 'Look is it alright? Is there anything we can do?', you know, 'Have you got this? Have you done that?' Nothing! Until we actually got to the hospital, and then the cardiologist there at the local hospital took on the case and she's still now, to this day, on a very closely balanced set of drugs as you probably already know, and those, she has blood tests every... month and her blood count is watched very closely every month. And slowly but surely, there is a slight deterioration, and it's the drugs that are causing it and they can't take her off the drugs because her heart won't stand it. So that's really where we are at the moment.

I think once, there should be some form of system laid down whereby when somebody's been seriously ill in hospital and they come out and they're at home for the first day, that there should be somebody almost there to meet them to talk through what's happened, talk through what you've got to do, to get you through those first few days, because don't forget you've got to get wound up to what's going on as well. You need somebody there almost on a daily basis for the first few days, to talk you through. Just calling in, just to see if everything's okay. That I think is one of the most important things but it needs to be somebody who understands what's gone on, and the severity in this case of what had gone on. That I think is the most important thing. Then as you say - which is happening now in the 'Hale & Hearties' - somewhere where you can phone.  Somewhere where you can talk to somebody who knows and understands... even to say, 'Okay, under those circumstances you better bring her in straightaway'.  

 

He worries about leaving his wife on her own and thinks more psychological back-up would help...

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Age at interview: 72
Sex: Male
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We then had to consider what we could do. She couldn't go walking anymore with the dogs, we had two dogs at the time. She couldn't go walking anymore, so this in itself built up a frustration in her, and lot of frustration in me and a bit of a concern of how it was going to affect her. The first things also when you're first brought out of hospital was taking the dogs for a walk - I was always concerned about going out of the house and leaving her - you never, you never quite knew whether you were going to come back to her being alive, being walking about or being collapsed in a big heap somewhere. And that in fact still happens today I mean even, today I'll wake up in the middle of the night to see if she's still breathing, which is silly. It's peculiar really but the fact it happens, it crosses your mind! 

At times you think well I need some psychological back-up here to, I feel sorry for people that, if you like, aren't classed as laid-back, classed you know, okay if I can do something about I'll do it, if I can't, then don't worry about it because there is no good worrying about it, but even so I think that somebody who isn't, they'd be absolutely in a terrible mess, going through the situation that we went through. It would be, it would have been nice right from the onset for somebody that you could have spoken to. A number that you could have phoned up and said I've got this problem now, how can I handle this? Whatever it was, it could be health problem it could be a psychological problem, somebody you could talk to who knows what's going on and could tell you and guide you and say, 'Yes, well I know, yes we've met with this situation before and this is what you must do'.

 

He needs to get out and meet other people but his wife can no longer lead that kind of life.

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Age at interview: 72
Sex: Male
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I wouldn't say it's changed a great deal because we've always been a very close couple, we've always done things together, but of course that has meant that we've always taken the dogs a walk, we've always gone on holiday together, always been country holidays in the main, although we've been abroad quite a lot which she can't do anymore. So we've always done a lot together. So we're only not together in the things that we used to do together like taking the dog a walk - I take the dog a walk now on my own - but the problem with that is that I have a whole host of friends that I meet every morning - different people, different people with dogs - across the fields, chat to them, talk to them. I've met a lot of people and I come back, if you like my daily chat has been fulfilled. Now that of course is what she hasn't got anymore. When she used to come with me then she would be involved in that daily chat but that doesn't happen anymore so... it's affected us in that way in so much that you don't meet people, and the one thing I have to do is meet people. 

I'm not very good actually with people, but I do like to meet people, I feel people are just part of life, if you don't meet people then you'll become a recluse and that's sad. So I have to do those things now which we used to do together, I have to do those things on my own.  

All our lives we have been close together because we used to do a lot of dingy sailing, in fact all the family had boats and we used to race all over the country, and if you like my wife was our team manager so it's not up until, that was only a few years ago that I packed up. She was our team manager and that was it you know, you were with a whole crowd of people but when I stopped sailing of course all those people went as well, and that's when I joined the drama group because I said, I've got to meet somebody, I've got to be with somebody, be involved with somebody, doing something. And that's what I did. I marched down to the local village hall one day to the drama group meeting and I said I'm here! But [wife] couldn't do that you see.

She has joined a local woman's sort of club which meets once a month but that's only a low-profile thing you know, they don't seem to do anything but just talk but that's good, that's good and she's done that. But apart from the garden which is always here now she hasn't got anywhere to go out and meet people, so we've got this divide, where I can go out and meet different people every day and see what's going on in the world, and she will stay here till I come back, so the only time we go out, is if we go out to a nursery or something like that so we don't meet many people not people we know. 

A woman whose husband had been ill for many years with cancer, diabetes and heart failure, said that he no longer talked to her very much. She felt his personality had changed and she didn't know why. She couldn't understand why he was so laid back about his illness and said he didn't seem to worry about anything anymore especially what was going to happen to him in the future. Because she was disabled she needed to know how they were going to manage, but he seemed unresponsive to her and her anxiety.
 

Her husband has become more passive than before he had heart failure.

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Age at interview: 76
Sex: Female
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Well let's put it like this he'd always been.. he'd joined Rotary because of the service and he enjoyed being on committees, and once he retired, well I saw more of him I think when he was at work than when he retired because if he wasn't actually working in the garden, he was off on all sorts of committees. I don't know he must've been on what - a dozen committees I should think - and actively involved in all of them. He did all the garden himself you know, he enjoyed doing that, and we had a dog then and he used to take the dog for a walk night and morning.

And can you describe him now?

It is difficult, he doesn't seem to want to do a lot. He's still on a couple of committees [pause] the Millstream here in the village which is, there's a day centre, well it's a day centre committee, he's come off the Millstream committee which is the housing but he's on the day centre committee, he represents the Evergreens on that. And as well another committee he's on in the village which is a charity thing connected with the church. But that's about all, and he just doesn't seem to do a lot these days, you know, I think of things to get him up and out you know [laughs] but he's, he just seems to lie back lot.  He reads the papers from cover to cover, looks at the odd crossword puzzle but he has very little to say at all. If there's, if we've got friends here he likes to be here, but he doesn't do much talking at all. I don't know, I don't know whether its age or whether its all to do with you know with the heart problems that he's had and the diabetes or what it is, I just can't make out. But he's certainly not the same man as he used to be. 
 

She cannot understand why her husband never worries anymore, even about important things.

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Age at interview: 76
Sex: Female
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But can you share your fears with him or talk to him about things?

Oh he just tells me I'm daft, to stop worrying [laughs] - "I'm alright," he says "there's nothing to worry about." This is [name], he won't talk about the fears, and it's the same I try to talk to him about what we should do you know and..."we can't you know keep on like this when you can't cope with me during the day, what are we going to do?" And he says, "Well we'll get a couple of the helpers, they'll have to come in more often," and I said, "Well when you pass on, into a home, we ought to have some ideas." He said, "Oh you'll manage, you'll manage." You know I said to him, "Well if I have to... if I die early, what are you going to do?" "Oh," he said, "I'll be alright, I'll find... I'll either stay here or I'll go into a home," he said, "I know the family can't do it, [name] is in Italy and [names] with the triplets there's no way they could cope with me and," he said, "I don't think I could stand living with them all the time. I love them coming for the day but," he said "I don't think I could stand actually living with them even if it was possible."

I think it is more on me than him because he honestly, I'm being quite honest, he doesn't worry at all about it. And he doesn't worry about other things very much at all you know. If friends are ill, a friend, my great friend who normally comes on a Monday when [name] is at Rotary who lives in the village she was in a nasty car accident a  month ago, this Wednesday. I've been worried sick about her and her granddaughter who was seriously ill after it, she's still under sedation after the operation on the following Sunday, but he doesn't seem to be bothered a bit.

 

 

Last reviewed April 2016.
Last updated April 2016.

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