Some people were seen by their GP or were taken to A&E after their TIA or minor stroke, and once their symptoms had subsided and medication (primarily aspirin) had been prescribed were able to go home to recover. Some people were given further appointments to visit a TIA clinic or outpatient department at a later date. A few of these people, particularly where there were no lasting effects, viewed the episode more as a ‘warning’ and spoke in positive terms about getting on with life, putting it behind them and that it was important not to dwell on things.
Ken who had fully recovered by the time he returned home feels it's important to keep going - 'it's a question of, you know, accept it and get on with it'.
Ken who had fully recovered by the time he returned home feels it's important to keep going - 'it's a question of, you know, accept it and get on with it'.
Age at interview: 78
Sex: Male
Age at diagnosis: 74
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And who, so when you returned home was there somebody here to be with you or …?
Well, my wife was here.
Yeah.
Yeah.
But you didn’t, did, …
But she didn’t really need to do any sort of remedial treatment or anything like that at all.
Right. And so, I mean, how did it affect her? How did she feel about what happened to you? Do you know?
Well, it’s a question of, you know, accept it and get on with it. As simple as that. You know, it’s no good weeping and wailing about the whole business, you’ve got to, you know, you’ve got to do something.
So a quite positive attitude about it?
Oh yeah, you must do.
Yeah.
I mean, if, if you don’t then you go under very quickly. And, but I, a big advantage was, of course, is that the symptoms that I had virtually disappeared in the five days that I was in the ward in hospital.
And had you did you have any kind of worries or fears that maybe there would be some resid, you know, some residual …
No.
...symptoms. No?
No.
No? A quite positive person, aren’t you?
Well you, you know, well you’ve got to be. It’s no, as I say, you know, life isn’t fair, get on with it.
Brian recovered completely from his TIA and doesn't think too much about it now - 'I was over it and that was it - one of those things that happens in life'.
Brian recovered completely from his TIA and doesn't think too much about it now - 'I was over it and that was it - one of those things that happens in life'.
Age at interview: 85
Sex: Male
Age at diagnosis: 84
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So then Alison and I mean, she was with me in the ambulance. We then spent some time hanging around in fatal injuries or whatever they call the department. And were examined and there was a lot of sage nodding of heads etc etc and we were taken to a ward and the idea was that I should stay there for the night. And stay there for a night, for the night I did in a little ward with six people. And Alison also stayed with me. So kind. And we didn’t complain but we were in a ward with an ex-policeman who complained a great deal and another chap who chuntered a great deal. I mean, it’s very interesting. No-one pays to go to hospital but when you get in for free it’s very interesting.
And so, in the morning they said that we could go home and they gave us a nice breakfast and there was someone who I suppose will be called the matron or a ward sister and she came and thanked us for being so nice [laughs]. So there was after all an advantage of having someone there who was being nasty. So with that we came home.
And were we then careful? Oh, I suppose we were. But I mean I was over it and that was it. And one of those things that happen in life . And that was it.
I wonder how much it owes to the personality of the person suffering and perhaps I’m, I seem to be treating it rather frivolously. I think so, because it does seem to me it was an interesting event. Quite funny to be strapped into the ambulance and suddenly find you’re talking English again. So you don’t worry about it. There’s, there’s no good it’s something that happens. Think of all the things that have happened in your life. You know, I’ve been married twice, Christ that was much worse actually [laughs].
Some, but not all of the people we interviewed had been admitted into hospital for a few days and in some cases a few weeks. Although it was usually a relief to be back home, it could be difficult to adjust to normal life again, particularly if they were experiencing residual symptoms (see ‘
Residual symptoms’). Most people were shocked to have been diagnosed with a TIA or minor stroke and it took a while for them to come to terms with what had happened to them. Because quite often a TIA or minor stroke happens without prior warning, some people were worried that they might have another episode. It could also be difficult to come to terms with the lifestyle adjustments that were recommended by the doctor or consultant (see ‘
Lifestyle changes’).
Clare was left with a feeling of fear and uncertainty when she returned home and she worried that the same thing could happen again. When the consultant told her to make changes to her lifestyle she felt resentful and upset
Clare was left with a feeling of fear and uncertainty when she returned home and she worried that the same thing could happen again. When the consultant told her to make changes to her lifestyle she felt resentful and upset
Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I had almost like a desperate feeling to get everybody I knew around me because I’d had a stroke I didn’t know what was going to happen next. I had no idea. So friends came down to see me. I was just, felt very insecure, very frightened, I didn’t know if I’d have another, if I’ve had one and they don’t know what caused it then I could have another one.
So it was fear?
Yeah.
Really.
Yeah, basically.
And uncertainty?
It was uncertainty, yeah. Yeah. And then walking around, you know, would I go, because the feeling of paralysis when you’ve got strength and then you suddenly experience paralysis - is quite traumatic, because coming down the stairs I’m still funny even now about coming down stairs. Weird that. I mean, I could be walking anywhere but just coming down the stairs still now makes me feel very frightened.
Ken felt shocked and upset at first that this had happened to him because up until then he'd been a very fit man
Ken felt shocked and upset at first that this had happened to him because up until then he'd been a very fit man
Age at interview: 68
Sex: Male
Age at diagnosis: 68
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Well it just shook me to the ground, really shook me to the ground. And of course from that I’ve had heart problems. And that, that’s how it’s all started. And all right this is very disappointing, I’m not used to being ill. I’m quite a fit man. And then now to be lumbered with this for the rest of my life at sixty eight, well [laughs] it’s no joke. That’s it really.
You feel very low. Because you, you know, you just can’t do what you want to do You sort of put on a limb if you like, until you’ve had the full results it, you, you don’t know where you’re going, if you know what I mean.
But I feel confident now, you know [sighs]. I don’t, it, I never thought I would have anything like this in the first place. So it’s a shock to the system, but I’m coming back and I’m going to fight it and I should be on top in a few more months.
For some people the fear of a repetition of events led to more extreme anxiety. A few people saw their doctor about this and were prescribed anti depressants, or referred for counselling, but not everyone mentioned it to their GP. Brian (Interview 08) said he kept his depression to himself as he didn’t want to be on anti-depressant medication. David (below) said he was sent home from hospital without much information about his condition, and he felt he needed more support afterwards. When Michelle was sent home she was feeling very upset and was still experiencing symptoms but had not yet been given any explanation about what had been wrong.
Ros who lives alone felt that after her TIA her anxiety about having another stroke got out of proportion and for a time she worried constantly about going out alone
Ros who lives alone felt that after her TIA her anxiety about having another stroke got out of proportion and for a time she worried constantly about going out alone
Age at interview: 69
Sex: Female
Age at diagnosis: 69
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They were enormous, absolutely, absolutely out of proportion my anxiety of having another stroke. You know, I just used to see it all the time. I used to go out here and think, “I wonder if I’ll get to the Tesco’s without having another stroke.” Or, “Will I get back without having a stroke.” You know, it was enormous. Enormous.
And you couldn’t get it out of your head?
No. That went, for about three or four weeks I was like that. But I did go, even [laughs] desperately scared I still went. And then it, it got better.
David felt lost when he returned home and didn't know how to cope
David felt lost when he returned home and didn't know how to cope
Age at interview: 67
Sex: Male
Age at diagnosis: 67
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I think the nurses did sort of say did give some information but even to this day, I mean, I know what a, a mini-stroke is obviously now [laughs] but even to this day I haven’t got, I wasn’t given that much information. I don’t think anybody actually sat down and said, “This is what happens and these are is, these are the results and this is what is likely to happen and this is how you are likely to end up.” In fact, when I came out of hospital, or am I jumping the gun…
No.
.. too much. When I came out of hospital Shirley and I sat here and we, we just didn’t know what to do. We were completely lost and alone. Absolutely on our own.
A few other people, like David, were disappointed with the lack of support afterwards. He described it as like ‘being in the wilderness’. A small minority of people said that they had been let down by ‘administrative errors’ that had left them waiting for a long time without a proper diagnosis, or as in David’s case being sent home without the home care /support team being notified.
The co-ordinator in the hospital and the practice nurse admitted that an administrative error had left David unsupported after leaving hospital
The co-ordinator in the hospital and the practice nurse admitted that an administrative error had left David unsupported after leaving hospital
Age at interview: 67
Sex: Male
Age at diagnosis: 67
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I raised it with, with the coordinator that we were talking one day and I said, “Do you know, it’s wonderful since I rang you but before I rang you.” And she said, “Oh well, I’d just been told or I’d been told that you’d slipped through the cracks. They, they forgot to let us know that you were being sent home.” And even one of the nurses saw me at the surgery and she said the same, that they hadn’t been told. It wasn’t until quite some time later that letters got through that it all sort of came to light as it were.
So how do you feel about that?
Not very happy. I don’t feel it’s any use complaining especially the way things are at the moment. Things being changed so much. But, yeah, to actually be left out there like that, I mean if it hadn’t been for Shirley, caring for me doing, in the early days, doing everything. Not, nearly everything for me, I don’t quite know what I’d have done. I would have had to gone into some sort of care situation.
Because I couldn’t manage to dress myself. I couldn’t prepare food. I mean, I still can’t cook or anything madam won’t let me. But you know, in the early days I it was … well, it was like being in the wilderness.
Rich feels that the support team should be aiming at getting him back to how he was before the TIA but that there is not enough support available for this
Rich feels that the support team should be aiming at getting him back to how he was before the TIA but that there is not enough support available for this
Age at interview: 66
Sex: Male
Age at diagnosis: 62
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I thought the treatment and the help I had in [ward name], in the ward, in [local town] was very good. You know, the care and the help and support I had there. The thing I’m a bit concerned about is when you come out. You know, and you progress. You know, I know this part of the house wasn’t built then, when I had my stroke, but I always remember that the team were out here, the CART team (Community Rehabitlitation Team) and the physio was there and my wife came out and she saw me walking unaided. That must have been two months after, about, yeah, two months after I’d been let out of the ward, walking unaided and there were flower pots, “If he goes over…” and the physio wasn’t even kind of within two, you know, stretch, “Go and walk over there.” Well if -I could have gone through that greenhouse.
I feel quite strongly and I, there was this article in this stroke campaigners magazine, about - it’s when you come out of hospital and you’re let’s say discharged, you have to go and do a lot for yourself. It’s almost as though, I remembered you know, walking with a stick [hammering] up and down the road about four to six weeks after I’d come out and the co-ordinator sat down, “Well, Rich, that’s as far as we can take you. You’re pretty good now.” I wasn’t 100%. I was still walking with a stick.
So you could be left at a point where you feel actually you could do with some support?
I, yeah, I think, you know, when does one when does one know that you’re 100% again? Question to people, do every, do any, does anyone, excuse me, does anyone go back to where they came from? You know.
So there’s a kind of question in your mind about ….
There’s a question …
… whether there’s some …
I’m, I’m …
.. permanent changes?
...sure, I’m sure, is there more you can do? But what they’re saying is that there isn’t sufficient physio people in the community other than going private.
Support from family and friends helped people to re-adjust to life at home again. A number of people said they felt it was important to be able to talk to other people about fears and worries, and that family and friends needed to know what was wrong and how they could help.
John felt able to talk to his wife and family about how frightened he had felt and says it's important to share things like this
John felt able to talk to his wife and family about how frightened he had felt and says it's important to share things like this
Age at interview: 59
Sex: Male
Age at diagnosis: 58
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Apart from the effects on myself, the biggest effect has been on my wife and my daughter. And they are just supportive. I think the first 24 hours they were very concerned. Fortunately my wife came to the hospital with me, and at the end of the consultation I made sure that she came in to meet with the consultant so that we both heard the same message about what had happened, the cause of what had happened, and what was going to happen in the future. And because we have a fabulous relationship in which we can talk about anything, I can tell her, I was happy to tell her - not happy, that’s wrong. I was able to tell her in the first 24 hours I was frightened. I don’t mind saying that.
And I’ve worked, I worked seven years underground, so I worked in mines, I know what it’s like to be frightened, and quite, it’s okay to say you’re frightened. It’s all right. And if you can tell your partner, “I’m frightened”, then they understand, to some extent. And they’re there and they, you know, I’m confident that Martine, my wife, will cope with whatever happens, because we talk about it openly. And the same for my daughter. You just say, “This is what’s happened. This is what I feel about it.” And it’s good to share that. And with, with friends.
Some people relied on their partner or spouse to care for them after they returned home. At times this could feel a bit much, and it could be difficult in the early days at home to work out just how much help was needed or wanted.
Angus' wife worried about him and wanted him to take things easy but he didn't want to be 'mollycoddled'
Angus' wife worried about him and wanted him to take things easy but he didn't want to be 'mollycoddled'
Age at interview: 61
Sex: Male
Age at diagnosis: 60
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Yeah, my wife’s reaction is I shouldn’t do this and I shouldn’t do that, take things easy, whereas I just want to get back to being normal and carry on as before. I don’t want something to sort of hold me, I don’t want to sort of mollycoddle myself, if that’s the right word. I just want to get back to normal, basically, and carry on as before, whereas other people want me to - my wife in particular, wants me to take things steady, don’t do this, don’t do that, you know.
For some people this was a double edged sword, not wanting to burden someone else, but at the same time finding that it strengthened the bond between them (see also ‘
Support and information’ and ’
Talking about it’).
Yvonne's husband has cancer and so they support each other through difficult times. At first he wouldn't let her do anything round the house but after a while she told him 'I've still got to live'
Yvonne's husband has cancer and so they support each other through difficult times. At first he wouldn't let her do anything round the house but after a while she told him 'I've still got to live'
Age at interview: 54
Sex: Female
Age at diagnosis: 54
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He wrapped me in cotton wool and then he put bubble wrap round. When I first, you know, when it first happened, I, he wouldn’t allow me to do any housework. If I got up to make a cup of tea, “I’ll go and make the tea. I’ll do this, and I’ll do that.” And eventually I had to sit him down and say, “Stop. You can’t do this. I’ve got to do some things for myself.” Or I got sneaky and started doing things while he was out at work. You know, like getting the hoover out and thinking, “I’ve still got to live.” You know, I can’t just sit there, [husband]. Oh sorry, and do nothing, you know
George's wife worried about him over- doing things and sometimes he felt she was nagging him which could cause tension between them
George's wife worried about him over- doing things and sometimes he felt she was nagging him which could cause tension between them
Age at interview: 77
Sex: Male
Age at diagnosis: 71
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I think it’s scared her, probably more than it scared me I would think. And she’ll say, “Don’t do this you’re going to get a stroke. Don’t do that, you shouldn’t be lifting this, you should be doing that,” sort of thing. You know. Nags away at me about it all. But .. [laughs] with my best interest at heart.
And how does that make you feel? Do you, do you kind of feel comforted by the whole...
No. That’s when I get a bit irritable.
Right.
“For heaven’s sake stop nagging me, I know what I’m doing.” But she means well. You know. And then she’ll start and then I start, and then ...we have words. It’s hard to say sorry. And that’s - will cause an argument.
David feels guilty that he has to rely so much on his wife now but feels that overall it has helped them to develop a stronger bond with each other
David feels guilty that he has to rely so much on his wife now but feels that overall it has helped them to develop a stronger bond with each other
Age at interview: 67
Sex: Male
Age at diagnosis: 67
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Shirley has helped me out of it. It’s anything developed stronger if that’s possible bonds of love between us. And we, we are together and that’s it, you know. I mean, sometimes I feel bad that Shirley does need to give me this care because I feel it impinges on her life and her lifestyle, but at the same time she says, “Well that’s what I’m here for. I’m your wife. I’m here to care for you and if the same thing happened you would do the same.” And of course I would.
I mean, we have had problems in the past, various things, and I think they all bind you together a little bit more. I think the, the feeling of guilt is quite possibly an unnecessary one.
My daughter gave me quite a telling off. Well, about four months ago, she went and picked [wife] up and came in and I forget where Shirley was, up the garden, I think,. and we were, we were on our own and I got a little bit upset and she said, “What’s the matter?” And I said, “Well, I’m so spoiling it for mum,” you know, “I’m…” and then sort of … and then she, oh dear. She left me have right, left and centre. She said, “How do think mum would feel if she thought you were like that, you know. You are not spoiling it. She is helping you and she is loving you, that’s what it’s about and I would do the same for Shirley.” And, you know, all this sort of thing. So I got put in my place. And it did help actually. It was needed I think and it went home.
A few of the people we interviewed lived alone and said that it was important to keep in touch with friends and family and not to be alone with their worries and anxieties.
Jennifer worries sometimes that if she had another episode that she would not be able to alert anyone
Jennifer worries sometimes that if she had another episode that she would not be able to alert anyone
Age at interview: 55
Sex: Female
Age at diagnosis: 53
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Because I’m on my own and I stay on my own but what if something happens and I’m not able to alert somebody?
Would, would, would I just die in here on my own? And that, that does worry you at, at time, times. But you’ve got to pick yourself up, up, dust yourself off and then, then just get on, on with it again, again. Because if you thought down that lines all the time, time you’d, you’d, you’d be terrified to move.
Ann recently experienced symptoms similar to those of her previous TIA's and she felt worried about what might happen. 'I thought I'd better stay awake because i might just die in my sleep.'
Ann recently experienced symptoms similar to those of her previous TIA's and she felt worried about what might happen. 'I thought I'd better stay awake because i might just die in my sleep.'
Age at interview: 79
Sex: Female
Age at diagnosis: 72
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More recently, in fact only about a week ago, I was working at home and I felt extremely odd, and was really quite worried about what was happening. And for the following week I went through some sort of period of being really quite scared, one sleepless night, and I thought I’d better stay awake because I might just die in my sleep, which was probably being stupidly dramatic.
Anyway I then went back to see the doctor and, cut?
And he immediately sent an e-mail, or anyway got in touch with the hospital, and then I was given an appointment which I have to look forward to this coming Monday.
Last reviewed June 2017.
Last updated August 2013Copyright © 2024 University of Oxford. All rights reserved.
