Are there people that you can count on if you need something that, are there people you can call who can support you?

No-one. No-one. So…

Any family?

No one. It was worse than… house arrest.

It was like house arrest only I wasn’t allowed visitors.

I think even if you’re under house arrest you can have…

Do you have any family?

I have no family.

No family?

Partly because a lot have (either) died or…(emigrated)… gone to Canada (long ago) or… [smiles and chuckles]… in the US or New Zealand or, all over the place. Or, you know, or they’ve died.

So, do you have any children?

No children. (No one).

No children. No. So how has that shaped your experience?

Oh, very much so. Partly because this perception that other people have. I (am) constantly looking at commentaries about health conditions on the computer, or leaflets or whatever. They talk about get your family to do this, get your family to do tha. Hello, hello. I haven’t got family. What about me? And that’s a, familiar thing that you’re supposed to fit a certain profile and if you don’t… then… there’s no answer.

No, you’re right.

So…

Hmhm. Wow.

it’s been very tough but… there again, that’s how it is, so just have to live with it.

Some people say after they’ve had a stroke they feel like a different person, maybe because their roles have changed or their attitudes have changed. Do you think that’s the case for you?

I think it probably… when people are living in a marriage a lot of them I think will give up and expect the other person to do it for them. But I’m not in a marriage you know, whatever I want I’ve got to do for myself.

And I think maybe that has an element in it because, you know, there’s no doubt you know, if I had been married I think probably I would have done the same, I mean, you know, it, you do I think. And I think that perhaps more than anything has made me be as good as I can.

Hmm. It is difficult. I think it’s interesting the way families react to, things I think my, I mean, my parents didn’t come and see me straight away, when I was paralysed. I think it was too much for them, actually so my sister was the first person to see me. She drove all the way down from, where shes, where she works and, which is not in London, and she was the first to see me the day after my stroke, and threw a strop at the nurses and washed me and did all the things she did. I remember she told me years later that what she did, she went home, shouted at her boys, her two boys shes got and sat down and wept.

And your mum and dad came in to see you eventually?

Yeah, they did. Yeah, they did. But they were, quite overwhelmed by it all, really. Mmm. And I, I tend to be, or tended to be trying to look after them, to not, and that’s a difficult thing when you’re an ill person, because you know you’re upsetting people, well, that’s how I see it, and so you tend to want to try and make sure that they see that you’re alright. I know if I can make them sure, they can see I’m alright when I’m paralysed, I don’t know, but I would try and do that. That’s what I’m like. But things, I mean, the social worker in the first hospital I was in was brilliant, absolutely superb. Fantastic woman.

Tell me about it?

Well, she, she was the one, I mean, she was the one that, I felt I could really cry in front of because I wasn’t going to hurt her. She wasn’t my parents, she wasn’t, you know, I mean, shed say to me, ‘[own name], your parents have told me how well you’re doing, yeah, and they need to know that doing well isn’t about being brave and stoic all the time because what you’ve happened to you is, is serious and very bad and it is OK to cry but it was her I used to cry in front of, [laughter], sometimes. Yeah.

It was a bit difficult with, our elder daughter has a stepson who was, had known [my husband] before the stroke and he found it quite difficult to cope with as a 3 year old. He, he was a bit scared of Uncle [name] and his growly voice and it took quite a few visits before he accepted him and then once we came to live here and he saw him all the time, hes, hes OK with him now and our own grandson is obviously just going to grow up, he completely accepts [my husband] in a wheelchair, it’s, you know, they’re together and voice , hes just going to grow up accepting him as he, as he is.

I’m very, I’m still very bitter that it’s happened and I’m so young. If it had happened and I’m 60 or 70 or 80 and I hadn’t got the responsibilities of the children, I could have accepted it a lot more. It’s the fact that they’ve, my children have had to learn to live with my deficits as well as myself and they’ve had to learn to adapt their lives and I didn’t want that. I wanted a normal childhood for my children. I don’t want them worrying about me, ‘Oh how’s mum today? Has she had a good day?’ I want them to have a really happy childhood and I feel in a way, it’s a big lot and it has marred what should be a very, very happy time in their life and it has affected the relationship that I’ve had with them. Obviously I had a period of time a 4 month stint in effect continually in hospital having first been diagnosed with the stroke and then having 2 successive heart operations. They had to live with my parents over that 4 month period, which was very, very difficult both for them and for my parents and then re-adapting back to life at home was very, very hard because I hadn’t got the same energy that I had before. I couldn’t do things as quickly. We couldn’t just go off on a bike ride or go for a swim or drive out and have a picnic because, first and foremost, I couldn’t drive, were in a remote village and I couldn’t, I just found I couldn’t do it and it’s the effect on the children that I find very, very hard to come to terms with and people have said to me in due course, ‘It may make them stronger individuals’ I don’t know.

My son was quite badly affected quite a long time after it happened to me. Not probably, I think to start with, there was a lot going on, it was kind of busy and there was appointments and things going on and, and we sort of perhaps let it all wash over him a little bit but he probably about 3 or 4 years after the stroke, he started missing quite a lot of time off school because of illness, not illness per se but tummy ache, headache, various things and he ended up seeing a psychologist and he had got quite deep-seated worries about what, what was going to happen to me, what had happened to me and he was frightened of leaving me to go to school, frightened of what was going to happen and I think we misjudged how badly affected he was by it.

Did he find it helpful seeing the psychologist?

Yeah. He was fine once he, it was, it was quite strange listening to him tell the psychologist about what had happened and how he felt about it because I think we were too close to what had happened to have noticed what was going on, not, just hadn’t realised how deeply it had affected him. You tend to think, ‘Oh, you know, hes very young, hes 8, hes fine, hell get over it’ and you just don’t realise how much they’ve taken in I think.

My grandson, aye hes only five months and I feel I’m missing out with him. Because my other grandson I could lift him, change him, feed him, everything but with the wee one I can’t. So I feel I’m missing out.

You were saying when you hold him it’s…?

It’s, well I don’t feel safe because I can hold him in this hand for a wee while but as soon as he starts to wriggle I feel like I’ve, you know if hes going to fall, I can’t support him and I feel like I’m missing out an awful lot with him, you know. God willing it will all come back a wee bit at a time.

HusbandYes, I can’t remember much more apparently I suspect because when I came out of that my mother died and really the big stroke happened after that and then I think it was a matter I suspect of finding out what I could do and what I couldn’t. When I went into the teaching hospital again, I said, ‘I want to learn to stand up because our oldest daughter was getting married and I really want to give her away’ and so the staff and the nurses worked quite hard at making sure I could stand up and speak.

WifeAnd say ‘I do. That was in the rehab unit. He went to the rehab unit at the beginning May, May the 11th and she was getting married on May 31st and he said, ‘I want to be able to stand up and say I do’, so that was his aim for the first 3 weeks.

And did you manage to do that?

HusbandYes. It’s the only wedding I’ve been to where somebody gets a standing ovation for saying I do.

How did it feel having to be so dependent on your wife?

Again, I didn’t like it because with’ to let you understand, how my job worked, I worked 4 days on and 4 days off. So the 4 days off, I have the house [laughter] I’m no saying tidy but I can do, I can do ironing, I can do the hoovering and all the rest of it and the meals were always made, you know. So when my wife was coming in, she had to start from scratch at 6 o’clock, you know, which meant we were getting our meals later, which, you know, it was, and my wifes had a hard day and shes coming in, as I said, normally the meals were made, and I felt, you know, it wasn’t really my fault but it was my fault, you know, and you start to feel, you know, [makes snorting noise] I didn’t like it. I felt guilty again. I didn’t feel guilty because I realised it wasn’t my fault and theres nothing I could have done about it, you know, about the illness, you know, that kind of thing. Hence the result of the illness was, it meant I couldn’t do too much about the house and I know my wife realised that, so there wasn’t any problem that way but, at the same time, without saying anything to her, I felt, I felt kind of, you know, I should have been doing more, you know. Normally I would have but, as I said, events decreed otherwise.

How was it that time when, you know, perhaps you started doing more for yourself and your parents were doing less for you?

Awful because my mum had been very supportive when I first came home from hospital and shed very much really taken over where the nurses had left off, so she would be cooking meals for me and a tray would arrive. At breakfast, shed bring it up to bed. I mean, shes in her 70s and before I woke, she would bring it and I’d say, ‘Mum, I want to come down and get my breakfast. Really the first few weeks were hard because the first few days I wasn’t well enough to do it and then gradually, as the stitches and such like from the operation improved, my health improved and I got the strength and I wanted to do more for myself and I wanted to prepare meals because I knew that in a finite number of days or weeks I was going to be back at home with my 2 daughters, not only did I have to look after me, I have to look after them.

So the sooner I started, the better and it was a constant battle towards the end with my mum and I had to upset her a few times because she would, she wouldn’t let me do things and it was holding my recovery back, it wasn’t helping me because I wasn’t using my arm because she was doing all the preparation work, even things like washing up, drying pots, you are using it to some degree, every simple task you can think of and she, she was jumping in there and doing it for me and we, we had a few, a few weeks where the relationship hit rock bottom because, obviously, mum was very unhappy and I tried to say, ‘I’m so grateful for what you have done, I couldn’t have managed, I couldn’t have got where I am without you but I need now to start doing things for myself and learning how to do them for myself and the longer you’re doing them, the harder it’s going to be for me to do them’ and she didn’t like that at all because she got into the little role of being sort of the carer and she didn’t like it when I came back into my girls’ lives after 4 months because they’d lived with her and I took back over but the mum role, so for probably about 6 to 12 months after that, we had a couple of little clashes which I feel very bad about but they happened because I needed to be independent again and I couldn’t make my mum understand as much as I tried gently by dropping hints or by even saying outright, ‘Mum, please let me do it, you know, this is how we did it before and were going to get back to that’ and mum said, ‘Well, I’ll do it for you, I’ll get it, I’ll pick it up, I’ll do this’ and I said, ‘Mum, you, you really don’t understand. Please I need to do it’ and she would, would push and then in the end I’d have to say, ‘No mum, please, leave it. That was very hard because I know I was hurting my mum because in the goodness of her heart, she was helping and she was doing it for all the right reasons but it wasn’t helping my recovery.

Have you been able to talk about it now?

Yes. Oh yes, I have now. Shes, shes fine about it and she does understand that now and I think if it were one of my daughters I would probably have the same issues because you obviously want to look after your child and even though I was 42, I was still her child and I was still her daughter and that, that instinct to nurture and care for is very strong but I was very angry and very bitter and resentful that I should be doing it for them and I felt, they didn’t make me feel it at all. Nobody, in a thousand worlds would ever have said anything. I felt such a burden. I hated, everybody must who is ill. It’s not nice having to rely on other people to do things for you. It’s very, very hard when you’ve always been the sort of person whose led your life independently and done things for yourself and run your own affairs, then to literally have to be, you know, spoon-fed, it is very, very difficult, as you can imagine. It‚Äôs not something that‚Äôs easy to accept.

So what’s important? What would you say to peoples families then?

To let them do what they feel that they’re able to do. Not to restrict, well not to say, ‘Right, you’re definitely not’ and stand over them so that they won’t, if you know what I mean. Because I think you should be cared about, yeah, cared of, think about and that, but’ space. That’s what I was looking for I think. A certain amount of space because, well, it’s nice to be able to say, ‘Oh look I’ve done that’ See these? I was fair chuffed [laughs].

Was that putting the curtains up?

Yeah [laughs], Yeah. Which I’ve done for years and never thought anything about it but’ Yeah. It was nice.

HusbandWell, I think that is a general comment which is that most of the care is given to the patient and not enough attention is paid to the carers and supporters. There really wasn’t any much support for [my wife].

WifeAlthough there was if you found out about it but the social worker’

HusbandIt didn’t come looking for you.

Wife’told us about what was available for [my husband] but it was only really through the stroke club that I found what was available for me as a carer and the, the carers set up where we were. So I think it would have been helpful if, right from the outset, they could have said what was available for me as well as what was available for him.

You know, obviously, you talked a little bit about your friends. I mean, what’s their reaction been to you having a stroke?

Still very supportive. A friend of mine got married recently and for his stag weekend, he went over to Amsterdam, which is, which is something I would normally have been one, he was one of the people I used to play with football that night I had the stroke, so he just assumed that I would go. I said, ‘Well, how are you going to be able to manage me in Amsterdam?’ He said, ‘Well, theres a gang of us going. There was 10 of us and out of the 10, I think 9 were nurses and one was a, was a doctor, so he said, ‘Well be able to manage you, that won’t be a problem. So I said, ‘Well, if you don’t think I’ll spoil things, OK’ and he said, ‘No, that’ll be OK. So we did manage to go and had a weekend in Amsterdam, which was really good and managed. It did mean sometimes they had to just all gather round and pick my wheelchair up with me in it and carry me up steps and things sometimes but we managed and it was a good break. So they’ve been very supportive and helpful, to be honest.