Reaching an understanding of heart failure and accepting what it may mean for the future happens to people at different stages of their illness. Most people we talked to said that the implications of heart failure had dawned on them gradually, and for others the idea of heart failure was still sinking in.
Several were unsure about the details of their prognosis and wondered what more could be done to help them. Others said they felt optimistic about the future and were looking forward to seeing their children and grandchildren grow up. A woman said it had taken her more than a year to accept her heart failure but that now she was 'plodding along nicely'.
He wonders if anything else can be done to treat his heart failure.
He wonders if anything else can be done to treat his heart failure.
Age at interview: 75
Sex: Male
Age at diagnosis: 65
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Well, the one thing I would like to ask is, if my heart is in such a condition as what they say, you know, can't have this medication and can't have this done to you and that, because of your heart, why am I not having some treatment of some sort or why isn't something being done? You know, or can anything be done? That's a better way to put it' not why has nothing been done... can anything be done?
Have you ever asked that question yourself of the doctor?
No, I've never asked the doctor, never bothered, no.
She had got used to her heart failure and has accepted it.
She had got used to her heart failure and has accepted it.
Age at interview: 63
Sex: Female
Age at diagnosis: 61
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Nothing at the moment. Just hoping that... it won't go away, they've told me it will never, ever, I'll never get my beat properly back, but I think at the moment while I'm on these tablets and everything is going all right as far as I'm concerned. Just carry on. I 'm waiting to see the heart specialist again and see what he has to say, but to be honest, they're not messing about with me and I'm okay, I'm all right. I'm not saying I'm all right, that's wrong, I know I'm not all right, but at the moment things are just plodding along nicely and I've just got used to the idea that I can't do what I used to and that's it.
How long has it taken you to get used to that idea?
Oh it took me a good year, a good year, and I don't think my husband's got used to it yet. He still seems as if he's watching me all the time, as if, 'Are you all right? Be careful. Don't do this'. Obviously, as I said before, with a bad heart it's something that you just have to live with. It's not like, like, I had a new hip, the other one was rotten so I had a new hip, I mean, you're not going to get a new heart, and they're not going to bring my beat back but, there's a lot of people worse off than me, that's all I can say. So while I'm on, just plod along.
Vivienne finds it difficult to accept the uncertainty of her heart failure.
Vivienne finds it difficult to accept the uncertainty of her heart failure.
Age at interview: 61
Sex: Female
Age at diagnosis: 60
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Have you asked your doctor about that?
Yes and I’ve been told they can’t tell , some people can last for twenty years, it could be ten to twenty years, they don’t know. Every person, it’s different with…
Hm mm
But actually I think well, with what’s wrong with me and even after the operation, if I’ve improved because they know how much my heart is pumping and working properly, I think, surely they must have an idea dealing with this every day with patients, they must have some idea although they can’t say exactly, nobody can say but I think they must have some idea and if they did, I’d rather know because, to get my house put in order. You know, if, if I was told you’ve got twenty years unless you get knocked down by a car, or it could happen anytime from three years to twenty years, well I’d just rather know because with me living on my own and having two daughters, there would be lots of things I’d have to talk to them about which because I look so well and everything, I think half the time they don’t maybe; my eldest daughter, they both know what’s wrong with me but maybes the, they don’t realise some things, you know, so one way or another you know I would just, if the doctor’s had any idea, I would be the first to say, “Well I’d rather know.
Having heart failure seemed to make many take stock of their lives. One man and his wife had decided to start a family. Others said they were now reading more widely or had started new hobbies (see
'Sports, hobbies and activities'). Others saw each day as 'a bonus' and tried to do as many enjoyable things as they could. A man who had worked abroad a great deal said that it felt as if he and his wife were courting again because they were now spending all their time together.
Says that time has become very valuable and that he wants to spend time with his wife.
Says that time has become very valuable and that he wants to spend time with his wife.
Age at interview: 49
Sex: Male
Age at diagnosis: 46
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I'm aware that I'm certainly more aware that time's valuable and try to do more with my time, with my family. I mean bearing in mind that for the last umpteen years I've spent one week at home and one week away or three weeks away or whatever and now I'm sort of like my wife's shadow to the point you know, she sometimes says, 'Haven't you got something to do?', you know, so yeah, we enjoy our garden together and make time for each other, more than we've ever done I mean it's great, it's like we're courting again, it's lovely, it really is lovely [smiles].
Accepting heart failure made some think about death and dying. Several were philosophical saying that death comes to everyone though maybe rather sooner to them. Some felt the need to put their affairs in order and one woman had started sorting out her house and possessions. A few people said that it was not death but dying that worried them. People usually expressed the wish to die quickly, though in general they were uncertain how heart failure would affect the manner of their deaths if at all.
Has organized her possessions and planned her funeral service.
Has organized her possessions and planned her funeral service.
Age at interview: 59
Sex: Female
Age at diagnosis: 55
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Yes, I mean I guess you know, certainly having all this has made me much more aware of you know, that perhaps I'm at greater risk of dying than perhaps other people that I know. And really I don't have any great fear of dying. I am a Christian so, and it's a fairly simple Christian belief that I have but it's very important; I am a practicing Christian. But after I'd had surgery one of the things that I needed to do certainly was to, it made me want to tidy my house up. I felt that okay, this might happen to me, and I need to make life as easy for my husband as I could. I don't want all my old things, like my wedding dress hanging around and him thinking what am I going to do with that or what am I going to do with all those things in the cupboard? So... I didn't do everything at once but I've certainly over the past two years, I've actually gone through the house and got rid of lots of things and put things in order. And said, because I actually manage most things in the house, finances, you know I know where the birth certificates are, the marriage certificate. So it's made me actually put everything in order, much more order, so that he can find them. And we've actually done our will as well, which we hadn't done.
But also I was very keen that my service, when I actually die, that my funeral service would be just how I wanted it, really and I've made that easy for him because I knew he would be dithering and thinking shall I? What would she want? So I've actually had my service arranged, soon after I had surgery really. I've changed it a few times because I hear a new piece of music and I think, you know that would be really good, I'll have that as well! [laughs] And I've actually warned people that it could take all day to bury me because I do love hymns and I do love music so it's going to be a long one! So don't book half a day; you need the whole day!
Brian feels he has lived a good and long life and the prospect of dying doesn’t upset him.
Brian feels he has lived a good and long life and the prospect of dying doesn’t upset him.
Age at interview: 76
Sex: Male
Age at diagnosis: 70
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I have pretty frank conversations with the doctor and indeed with my wife also. I’m fairly philosophical about it. I think that, I had rheumatic fever when I was sixteen and that may be at the root of some of the problems I have. But as a youngster, I was conscious of the fact that a lot of the people, boys I knew who had rheumatic fever, actually died. I was very fortunate in that my problem came right in the very early days of penicillin being available through the National Health and I was taken to hospital and I was there ten weeks and treated with penicillin and although it didn’t make the problem go away completely, it apparently did because for the rest of my life right up until my early sixties, I was fit and healthy. I boxed and I played rugby and I’d had no problems physically or from a health point of view. So I think I’ve, I’ve been very fortunate and the way I look at it now to, to come right back to your question, is, if I was sitting here talking to you with a serious heart problem and I was ten of twenty years younger, I’d be pretty fed up. But I’ve had a good active life and I’m now approaching 77, I’m being well looked after, both by my doctor and by my wife and I must admit, I’m very philosophical about it. I’m, I, quite comfortable. Dr [name] reckons he can keep me going for a bit longer [laughs] and as I say, that wouldn’t sound too good if you were fifty or something like that. But at my age I’m quite comfortable with that so I don’t have a problem. I’m quite relaxed about it.
Sorting out financial and personal matters had helped some people and their families accept the situation. Several people talked about making new wills and some had organised their own funeral in advance. A man who had also paid for his funeral explained how he had faced up to his fear of dying.
Explains how he had accepted that he will die and has arranged his own funeral.
Explains how he had accepted that he will die and has arranged his own funeral.
Age at interview: 82
Sex: Male
Age at diagnosis: 72
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I'm aware that I could die at any moment, I'm aware that I might not be here tomorrow. I've tried to meet that circumstance, it's a mental thing, I have arranged my own funeral, I've paid for it, and tried to set my affairs in order so that whoever tries to look after my estate whoever it is, will have the easiest passage imaginable. I've brought my financial affairs into some sort of simple order and I don't worry about the future. I've done all that I possibly know how to, to cope with that eventuality whenever it happens, whether it happens tomorrow or three years time or what have you.
My doctor calls me his star patient! And that is encouraging to me, I don't know whether I am really his star patient or not, but he's bolstered me up to that extent and I've something to live up to!
But I'm not worried about the future. I'm not afraid of death; I'm afraid of dying and there's a difference isn't there. I mean if I went to bed one night and didn't wake up in the morning that would be the way I would wish it to be, just as simple as that, like turning over a page.
Several people had found it difficult to talk to their family about the future, and said that doing so caused people to get upset. One man challenged the view that being organised about death was morbid and said families could find it hard to accept the uncertainty of heart failure.
If he shares his fears about having heart failure it will just worry his wife and overburden his...
If he shares his fears about having heart failure it will just worry his wife and overburden his...
Age at interview: 39
Sex: Male
Age at diagnosis: 37
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I don't think I can fully talk to my wife sometimes about my concerns because [sigh] I think she overly worries about it. On some things she gets frightened and worried about it, and then I only get upset for her, which doesn't help me. So the point of trying to share it with somebody helping me, it just defeats it, all I'm doing is telling her something that upsets her and I'm thinking where was the benefit in that. That's not to say if there's something we need to worry about and do something about, that I certainly shouldn't be hiding something like that from her. But some of the concerns that you might just want to chat to somebody or you know, get off your chest, I wouldn't do it with my wife now because of having seeing her react.
Like if you imagine an ectopic before, 'come on let's call', just you know, and it, she, she just gets so upset and very worried and then that affects her and there isn't going to be necessarily a nasty outcome out of it, it's just I'm not so good. 'Oh my god, what', so I just, I just don't any more because I don't see any gain.
Is there anybody you do talk to?
Not so many no, I tend to probably keep most of it to myself.
Some of my family now and then, but I tend to, one or two friends, but again you don't overdo it, you don't overburden people with problems really. So I tend to just mull it over myself [pause] and then feel sorry for myself for a day now and then, and then [laughs] just get on with it, just carry on. Because you get, I only worry about things, I try to concentrate on things that you can do stuff about, but other stuff there's not a lot of point and that hasn't been a change of my personality that's how I've always been, I think you're just a little more focused on some things now.
His family are reluctant to talk about end of life issues though he thinks it is important.
His family are reluctant to talk about end of life issues though he thinks it is important.
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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And I think one of the difficulties being ill or being faced with the uncertainty is that the family find it very hard. But I need to talk about the fact that I want to get assets and money into my wife's name, that I want to get us moved, I want to sort of get things straight as possible... [and] these aren't conversations that the family wants to have, and so there is a slight difficulty there. I think... families want to pretend that nothing is happening and everything is normal, and you can be painted as being rather morbid, whereas in fact you're being organised. It is difficult, but then of course this applies to many illnesses this is not specific to heart failure.
Several of the people we talked with suggested that their heart failure was harder on their family than on themselves, particularly their spouses.
Bruce says that his wife has found his heart failure harder to accept than him.
Bruce says that his wife has found his heart failure harder to accept than him.
Age at interview: 76
Sex: Male
Age at diagnosis: 63
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But I have this belief that we as patients just accept what we are told whatever is going to be done to us and, you know, that’s what has to happen and we know what’s happening to us as we go along whereas wives and husbands they only sit and wait and they don’t know and they don’t really know what we are feeling and this kind of thing. And that light really got to my wife and she was much happier when we could put it out of sight.
Have you talked about how you both feel and sort of the impact that this condition has had on you and your wife?
I mean one of the things that I do is. I have a slight back problem, a bit of deterioration in the spine and if we are wandering around an exhibition slowly or standing around. We were at a place yesterday where we were listening to a guide standing up and that gets my back going a little. Nothing to do with the heart but if there is a chair I will go over and sit down or if it’s in a museum I find that if I just say, ‘I’m going for a walk’, and I’ll walk off down a corridor briskly a few minutes and come back and as long as my wife knows where I am and what I am doing that’s fine but it’s not unusual for her when she saw me sit down yesterday to say, ‘Are you alright?’ [ha ha] [mmm] yes.
Yeah
But otherwise that’s. I think she feels it more than I do these days because with the problem that I’ve had I think I’ve become a bit philosophical that I’ve just got to take what’s thrown at me. Yeah.
But she feels that, she worries.
Yes and I think it’s a problem for wives, husbands, the family.
For the loved ones?
Yes. But they are not there being treated and actually experiencing things.
But for the loved ones it may be?
It’s harder. I think it is harder. I try to say to my wife, ‘Look, you know, we can’t change it. ‘We’ve just got to accept what comes’. And she does try to do that but, you know, I think there’s that feeling of helplessness. You know, I suppose it’s the same thing for any loved one. You know, you don’t want them to suffer and if you do, you know the mother will do anything to stop the child suffering and I think it’s that kind of thing with the wife and husband of patient’s have to face. I mean my children, I think they were concerned. My daughter made a point of being with my wife when I had the operations, keep her occupied and this sort of thing but obviously concerned herself but because she is away, she is a professional, she knows what the risks are and so, so not so close as my wife. That’s the situation I think.
For information on end of life care see the
resources and Information page.
Last reviewed April 2016.
Last updated April 2016.
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