I don’t mow the lawn, my son does that I don’t do any heavy gardening. Vacuuming, I have a lady who comes and helps me in the house, she does the vacuuming. I do a lot of tidying, even changing the beds we do together because of turning the mattresses and things. Well its taken the best part of a year to accept all this because I know if I did try to do them I shall puff and pant, and I shall have to sit down and then think well you silly girl you know you shouldn’t have let yourself be in that condition. So you pace yourself, I have learnt to pace myself, and I get signs in my breathing just how far I’ve been and then I think well OK that’s it well stop now. So… moving furniture around you know, doing things… standing at the kitchen cooking for long times, I tend to cut that down and do them in spells. I don’t have a huge baking day. Well standing there you know all day, you know baking. But you accept that, you get, you can manage quite successfully you just work your way around it.

So what would you say about how heart failure has affected you physically?

I didn’t let it affect me.

What do you mean? [Laugh]

I adjusted my life. I don’t know whether I adjusted my life around it or it around my life [laugh] but I thought, Life goes on.

Ok.

So I used. When you’re, when all of this was happening if there were things that are found were troublesome to me or affected me, you know, that I wasn’t breathing or very puffed and that then maybe I wouldn’t do that next time. So I adjusted my life accordingly really.

And I find if I can’t do a job one way because of shortage of breath and that I find another way of doing it.

How for example?

Yes for example well you mentioned garden I like gardening. Well if I found I couldn’t dig or whatever I’d find an easier way of doing something or a longer the handle or something, think new ways of doing things. So I would adjust, I adjusted really.

Would you say that to some extent heart failure hasn’t affected your moods and the way you live your life?

No I don’t think so. Yeah. I don’t think it’s made any difference. I don’t think I let it make any difference and I think that’s the difference. It’s there and I can’t do anything about it. Live with it and make the most of it and that’s what I’ve done.

And then just after my wife had died, a social worker came round to see whether we were pleased with the railings and sort of discovering I was newly widowed, bombarded me with all sorts of questions such as, ‘Did I need any help getting up in the morning out of bed?’ ‘Did I need any help getting back into bed?’ ‘Could I cook for myself?’ (Well I can for my own delights, whether you’d like my cooking or not is another matter!) and ‘Did I want a woman?’ and I thought for one heart beat’s moment, my goodness me, what’s social work coming to now! But she was talking about social work aid people, and having discussed it she reckoned that it was a pretty expensive business unless you had them to get you up and put to bed again and unless you were very hard up you had to pay for them and that you’d probably do better on the open market.

So I have a woman that comes in every, once a week, who hoovers for me and kind of puts the house into some sort of order, which is very good. And that’s the way I live. I do my own washing and ironing, etc but she hoovers up and things so the place doesn’t become a complete shambles.

(This interview was conducted in Punjabi and the transcript translated into English.)

Before I had someone to do the shopping but now my friends get everything for me. My sister’s son gets a few bits and pieces for me, vegetables etc., milk and so on, they’ll bring those. They fetch these on one day of every week. Small items, well where I live in [place name], there are one or two of us ladies who have a good group going. They fetch me those things. They say, ‘Let us know of whatever you’ve run out of and well bring it for you. But, you know, some things just go off after they’ve been there a while. I throw them out and only order small quantities. There are shops very close to us, there are some small Indian shops. I can tell them to bring over things too and they never say no. Just small items, you know. They know that I’m not able to carry them;

Yes. Do you tell them what you want over the phone or do you go to the shop?

I go to the shop, it’s really near. It’s like going out of here and up the road. It’s slightly far but not much. And whenever I do go to those shops I tell them what I need or I’ll ask one of the ladies who lives in our place to go and let them know that I need these particular things, and then they’ll bring them over. I’ve also been using the lift as well for a long time and not the stairs. The doctor advised against using the stairs.

Well apart from keeping the house tidy and clean [ah] I don’t have any help so I do everything in the house. I also Today I have been doing voluntary work. So every week I do a voluntary job. I, years ago, I’m saying years ago, for about four years I think I was a member of a voluntary organization and [ah] I retired this last year or the year before. Time flies. And as soon as I retired a friend of mine says, Oh now you’re retired from Samaritans’, because it was Samaritans I was heavily involved in. She says, Now you’re retired you can come and help us. And she works at, we call it chapel, it’s church and where they serve meals at lunchtime or coffees on a morning, meals etc. And you can come on the till. Because I’ve always worked in an office and always involved with monies and I was treasurer to the Samaritans, that sort of thing. So I’ve been since then I do one day a week on the till [laugh] and still doing it.

Well, I could work hard, I mean, nearly anything, dig anything, all hard work, but I just got gradually worse and couldn’t do it, that was the thing.

So, if you describe for me, would be helpful, I think, is if you describe what your daily life was like before you had the problem, and now what you can do. That would be helpful?

I can do half as much as I used to. I can’t do hard work now, or heavy work, no. I can do light work, and I could go all day, but I couldn’t do hard work, no.

Right. I don’t really know the difference between what you mean by hard work and light work, so if you could give me some examples, that would be helpful. What can you do?

I could go and dig a hole. I still can, but it takes twice as long.

Well really it hasn’t affected my relationships. I mean, I don’t, it’s affected me when the grandchildren are there, because I can’t play with them like I used to, I can’t pick them up like I used to. I mean we used to love a good old rough and tumble on the floor, may be a game of football in the garden but I can’t do that any more.

Oh, I mean I can’t walk from here to the window without stopping. At one time I could do different things and do things without worrying about it, but now you don’t want to, it makes you feel lazy. You’re inclined just to sit back and do nothing. You’re not in the mood for doing anything, and when you’re not in the mood for doing anything it can be frustrating for the house, housepeople as well. My wife doesn’t like it when I just sit back and do nothing but I can’t help it, I’m afraid.

You know, if I’m preparing something in the kitchen, I mean if it takes me 20 minutes longer, it’s still prepared isn’t it? If I’m going upstairs and I feel short of breath and I know the baths running, you don’t turn it on so full any more, you let it trickle, you know what I mean. So in case, you know what I mean? All them things you start thinking a way different. Or that’s what I’ve done anyway.

One time, the first time I came out of hospital I came back longing for a shower. Jumped in the shower – oh I want a bath – set the bath, came downstairs. I’d forgotten that the bath was running! Luckily I got upstairs and it was just starting to just, you know that moment when a little more would have come over’ And I went, from then I says no and I’m setting the bath, turn it down low. If you go upstairs 5 times because it hasn’t set properly, it’s better to have it low than to be overboard, isn’t it, you know what I mean? Next thing they’re going to say, ‘Hes incapable of living by himself or whatever. You know so you’ve got to think, you’ve got to think a way different, you know what I mean.

I was physically active before, in a sort of walking, and I used to like sport and well a long time ago I was disco-mad – of course no longer I can not do that these days! And carrying stuff is… walking is, walking is very slow, it’s not like before. In the meantime if I, if I was to walk for you know, I have to make sure that the energy would last me this distance, so I don’t walk fast. But if I’m, the second thing is I cannot run. I mean to say the other day I was, I can see the bus is coming and I wanted to run to catch the bus, but I said, “No, no it’s alright I can always delay for another 15 minutes rather than you know get an experience,’ otherwise if it was before I would run even behind the bus [laughs] I don’t mind, but not now. Going up the stairs, up the stairs, climbing the stairs is very, very difficult, let’s see – carrying heavy stuff, these sorts of things.

Oh yes, you do rely on your wife a lot, yes. I do now. I’ve never been one to rely on anybody as such but you do rely on your wife a lot now. And the family, actually, because the family are quite good. They’re all pretty much – any jobs that want doing, you know I used to be able to everything – I only have to ask and they come and do it, they don’t even think about it, they just do. No, don’t you do that, well come and sort that out. That’s how it should be, I suppose, the family.

I’ll be honest, I’ve never been an exercise person. I mean, you run up and down the stairs 6 times going to the toilet, I think I get enough exercise (laughs). But I do my own housework, windows. They say housework, hoovering and that, is supposed to keep the calories’ I wash every day, my grandson lives with me, hes 18 this year, and hes a sportsman so hes got plenty of washing. Ironing, but I love ironing so it’s, that’s my exercise.

One thing I’m doing is keeping a journal. It’s, you know, it’s not a great sort of in depth thing. It’s never going to be published in a hundred years’ time as. But I write what I can do each day and that’s been good because I can write, I can look back and go, Well two weeks ago I couldn’t do this or two weeks ago I was only able to do so and so. And it’s things like having a rest, I’ve noticed that whereas I used to sleep every afternoon then it got to be I’d just lie on the sofa but I write what I do and so it might be: took the dog for a walk, made some chutney, did a bit in the garden, drove to so and so. But to be able to say that is very different from pages of two or three months ago when it was very limiting on what I could actually do.

Has it helped?

It has. It has because I can, you know, and I’m starting now as well to think I should write, you know, like if I’m feeling a bit low or if I’ve had a really good day. You know if it’s been a beautiful day I’ll be, lovely day and did so and so. But it is that thing of being able to have that, almost that record of turning back a month and being able to remember how I felt a month ago compared to how I feel now. So my improvement is. It’s at a very gradual gradient going up.

Do you receive any incapacity benefit?

I do. I get top mobility so that’s why I have the car outside, first time in my life I’ve had a new car and they have the money every week, the £51 and I get medium disability of £49 a week with that I could have somebody come in, I dare say to clean for me but I don’t. I keep it because it helps me live better from week to week with regards to food and stuff like that.

Where you working before you were diagnosed?

I took early retirement in 1990 but I worked for 23 years in a Children’s Home for County Hall as a Deputy Matron. I worked in the Children’s Home for 23 years, my Mother worked there for 33 years and my daughter worked there until recently when it was closed down. So [laughs], we put a lot of years in.

I can’t get what is it? Carers allowance because somebody is got to be earning less than £100 in the family or something and they’re either making more than that or me grandchildren can’t because they’re at Uni and things like that. But it’s, it’s still a struggle to, you know, to try and keep on top, I have to rely a lot on the girls.

And my eldest daughter’s aware, you know, of what I’ve got and she helps as much as she can. But you don’t like to keep asking all the time if you need things, well, I don’t like to and I won’t, if I can do it, I’ll do it but you know, with living on me own, theres a lot of things that I have to have help with.

Yeah. And how, how do you go about sorting that help?

Just asking them. I mean, I’d gotten in the bath one night, I couldn’t get out, you know, [name of daughter] had to help me out and when I get tired, I’ve just got to leave everything and go and lie down. It comes over me more or less straight away. I’ve just got to ask when I need, you know, me floor washing and that, the, the girls will do it. I know I get this £49 a week which I’m so grateful for but it just helps me, you know, getting better, a bit better food or, you know, so and I don’t pay the girls anything. They just do it for me.

It doesn’t seem that having a heart condition or having an ICD fitted has had any effect on your work life?

No, no, not at all. I feel much better and I can do more work than people who are fit. That’s the push.

Ok. So you work 5 days a week and?

Sometimes I have to work 6 days. It depends because I am a security person so I have to work any hours which I get because they tell me sometimes, You have to come Saturdays, Sunday. I have to work.