"They push you a little bit sometimes where you would sit down and do nothing"
John and Peter from our Breathe Happy group tell us the difference this Day Therapies group has made to them in helping manage breathlessness associated with heart failure. In this short video (transcript below) they also describe how their ideas of what hospices do have changed...
John: Sometimes I sit and I’m perfectly alright and I think there’s nothing wrong with me. But if I get up to move and I can’t… I lose my breath and it’s just gone. Some people when I’m telling them what it’s like here and they say ‘what do you want to be there for?’ But they’ve never been in the situation to know, and it definitely is doing me a load of good, no doubt about that. Plus the fact, I’ve got my wife at home who does everything because I can’t do a thing and that gives her at least a break on that which is good. That means a lot to me actually.
Peter: Because otherwise I’d be stuck at home all day and when you’re on your own it’s very difficult because you don’t see anybody, so the social side of it is very good as well, and that brings you out of yourself and gives you more confidence. They’ve all got similar conditions to myself and in various stages but it’s very good to learn how they’re getting on, how they’re coping with breathlessness and heart failure.
John: I’ve done exercises which I find quite good because otherwise you’d sit there and do nothing. But I do them and practice them at home. Even the games that we play is a big help to the brain.
Peter: Rather than sitting down at home all day you can move your feet and you actually do get some exercise in and probably do things that you wouldn’t normally do. So I find it quite educational. You do tend to sit a lot unfortunately because of the breathlessness but there’s lots of exercises you can do whilst sitting in a chair so that’s quite handy.
John: if I find I’m out of breath which I am often because I’ve only got to walk from one room to say the bathroom… I can’t, I’ve got to sit down straight away. My breath has gone and I just have to wait until it comes back. Take the shape of a telly; I go up one side, along the top down again. So I’m breathing in and then out as it comes along the bottom and I find that absolutely amazing actually how you can get back. I learnt that here.
Peter: I mean it is very good. You do learn a lot, there’s no two ways about it. You know how to cope if you do become breathless but as for getting out, it’s very difficult because a lot of the time you’re confined to the house. It is important because it does help you cope and not worry. That’s the main thing, you know, not to worry about your condition too much. And they push you a little bit sometimes where you would sit down and do nothing. It does give you the impetus to get up and do perhaps that little bit more than you would do. Confidence is probably another word.
John: I wouldn’t be able to do those things. I think I must do this, I must do that, and that does make a big difference to me actually, a terrific amount.
Peter: It’s like where people normally come to spend their last days, I always thought of a hospice, which I’m totally wrong obviously. There are other sides to it and thank goodness there is.
John: I mean I knew these places existed but I didn’t really know a lot about them and how it goes on. And I was amazed how wonderful - and I’m not saying that, I mean it you know - how wonderful they are.
Peter: I shall be sad when it finishes in another couple or three weeks because it has been most educational and helpful for my condition. I have learnt a lot from it, that’s the main thing. Give you confidence, you know. I’m going to go ahead and get myself a little electric scooter now so I can get out and about and that gives you the confidence to do that.
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