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.
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.
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.
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.
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?
Talks about his need for more back-up support at home to help him and his wife cope with her...
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...
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.
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.
Her husband has become more passive than before he had heart failure.
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.
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.