Reaching acceptance about heart failure
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.
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.
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.
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…
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.
Says that time has become very valuable and that he wants to spend time with his wife.
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.
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.
Explains how he had accepted that he will die and has arranged his own funeral.
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...
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.
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.
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.
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.
Last reviewed April 2016.
Last updated April 2016.