TIA and Minor Stroke
Relationships, friends and family
Partners, friends and other family members often provided much needed support for people during and after they had their TIA or minor stroke. A number of people were with their wife, husband or partner at the time when they experienced their TIA or minor stroke. In some cases it was the husband or wife who called for help, or encouraged the person to seek help (see ‘Seeking help – routes to care’). Most people were shocked and frightened when they realised that they had had a TIA or minor stroke (see ‘Getting a diagnosis’ and ‘Understanding TIA/minor stroke’), and it could also be a worrying time for their family too.
Phillip's wife didn't panic when she heard the diagnosis. She wanted to know more about what it meant and so got straight onto the computer to look it up
Phillip's wife didn't panic when she heard the diagnosis. She wanted to know more about what it meant and so got straight onto the computer to look it up
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When you told your wife what had happened, what you’d been told - did she come with you to the hospital?
No, no. No, she was working. As I say, she’s a very focused researcher and so she said - and by now everything had vanished. So we were sort of, you know, at the back end of the curve, as you would say. You know, we were coasting downhill, we were at the bottom of the hill. This crisis was completely over. So it was just a precaution, really, which I was very embarrassed about because there was no, I was going to go and see my GP and say, “Look, I had these symptoms, but they’ve all gone.” And she’s going to say to me, “Well, why are you wasting my time?” That’s what we kind of expected to happen. And, no, no, so she’d gone to work. And I went and I saw my GP. And then I called her and I said, “Look, my GP thinks that I might have had a mini-stroke and sent me off to the [hospital].” And she said, “Do you want me to come?” I said, “No, no, I’m okay.” And so I trundled up there, and I was there until 6.30 or something. That was because of the row with the surgeon. And then I, and I called her, then I called her and said, “Look, it’s all over. I’m on my way home.” She said, “Do you want me to come and pick me up?” I said, “No, no, that’s okay. I can, there’s a direct bus.” So I got on the direct bus and that worked out fine. So, so, no, she had, there was no panic there. And then I got home and I explained everything that had happened to her. And she said, well, she just reached for her laptop and she picked up her laptop and she started working on her laptop because she wanted to know what we were talking about. That’s the way it went. And the computer gives you magic access to these things.
Adrian's wife recognised what was happening to him from the FAST campaign on the TV and she acted quickly to get him help. It wasn't until afterwards that she realised how frightened she was
Adrian's wife recognised what was happening to him from the FAST campaign on the TV and she acted quickly to get him help. It wasn't until afterwards that she realised how frightened she was
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She recognised because the face, the FAST thing on the television, the advert on the TV and that’s the only way she would have known. And that’s the first thing she said to the paramedic. If she hadn’t seen that advert she wouldn’t have known what was going on, and then it clicked in her mind straight away. So that absolutely, that advert works absolutely perfectly.
And which bit of that was it that rang bells with her?
All of it. It was the, when my face dropped and my speech began, apparently I was starting to make funny noises. And she said that clicked in straight away and that’s why she reacted the way she did. And she was at, one minute slightly torn between leaving me and getting the telephone to get on to the ambulance, but, she’d remembered that advert, and it obviously works and its it does its job. It’s really good.
And I was going to ask you what was going through your mind during that period of time?
My fear was that I was going to be unable to communicate, that I’d lose the ability to be able to talk to my partner. That I’d be unable to work. Losing my arm, not being able to move my limb was a horrific thought.. And it was the lack of communication is the worst thing. Because... that’s a big part of your personality as well, your voice, and, and, your communication skills. And I was, it really did scare me. And the thought of not being able to talk to somebody that you love. It really is quite horrific.
It frightened my partner more than I realised. Because she was fine. It happened on the Saturday, so she was fine on the Saturday, and she was quite cool on the Sunday. But on the Monday night when we were laying in bed, just sort of dropping off she started to cry and it really hit home. And it really frightened her.
So a slightly delayed response then?
Yes. And I think it… because you run on adrenaline and the heat of the moment that did, it frightened her a lot.
And what were her concerns mainly?
She thought she was, we haven’t been together that long so she thought she was going to lose me. And also if I ceased to communicate parts of who I am disappears. Because of the other things that we do together, if I lose my voice, I lose a great chunk of what we are. So it was quite important to her.
A few people said that they didn’t want their wife or husband to worry about them too much and that it could sometimes be difficult to get the right balance between telling their partner about what was happening and how they felt, and stopping them from being too concerned. In some cases where the spouse had also experienced a serious illness it could also bring couples closer together as they had a shared sense of understanding.
Ken and his wife have been married for 50 years and are very close. Ken is his wife's carer as she has health problems of her own and so it was a worrying time for them both
Ken and his wife have been married for 50 years and are very close. Ken is his wife's carer as she has health problems of her own and so it was a worrying time for them both
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And what about your relationship at home, I mean, has it kind of altered things at all? I know that you look after your wife in some ways because she’s disabled …
Ken' Yeah.
.. has the, has it turned …?
Ken' It’s made my wife more worried and it upsets her. But other than that, no. We still, I mean, we’ve been together nearly 50 years…
Quite a strong relationship then?
Ken' So you know, we do share everything. It’s not a question of we don’t, all right might be a little secret keeping my health but other than that we’re not.
And the reason for that is so you won’t worry her?
Ken' Yeah. Because she’s got …
.. and did you …
Ken'.. enough of her own problems.
And did you feel that having to tell her about that, was that difficult knowing that you, she would get worried?
Ken' Well it was, yes.
Wife' I’m not butting in, when he come out of that hospital, that doctor’s and we had to go straight to [place name] …
Ken' Yeah.
Wife' .. and I said, “What is it?” And he said, “Well,” he said, “I’ve got to tell you,” and I just couldn’t, just couldn’t believe it./ I just not could believe it.
I mean, I was just wondering what that disbelief was? You know, was it that you thought it was very serious or …?
Wife' I did, yeah. It’s no good saying, and I still think it is. You know, all right, people tells me not to worry but you do. You do worry. You know, you just can’t sit there saying, “Oh, I’m not going to worry about him,” because you just, you know, I mean, when they, he had to go that Wednesday night and they kept him in, in hospital, you know, I was really out of my mind but well I had a friend and that he was marvellous, you know, and that, but as I say, I do worry about him, I really do.
Clare's husband had been diagnosed with cancer a year before she had her TIA and she felt that it brought them closer together because he understood what it was like to have a serious illness
Clare's husband had been diagnosed with cancer a year before she had her TIA and she felt that it brought them closer together because he understood what it was like to have a serious illness
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My husband was absolutely fantastic from start to finish. And I don’t know really what would have happened if I didn’t have my husband here in all honesty because he was supportive. He was here for the, because he was allowed time off work to be with me. And that was very reassuring.
Did, would you say, did it affect your relationship in any sort of adverse way at all? Or has it all been quite positive in that sense? I mean, some people have said it brings them together more, some people have said it’s been really difficult and it’s caused us problems?
Well I, I think in view of the fact that [husband] had had cancer the year before sort of brought us together then I had a stroke, well I don’t think you can get any closer [laughs].
You know, we just, we, you know, we’re close because we’ve both had traumatic illnesses.
So I mean, we’ve had a few funny times on it when I sort of said to [husband] “It’s all right for you, you know, you had your prostate removed. I’ve still got to take tablets for the rest of my life.” So we’ve had banters but it’s more bemusement than anything, you know.
And that’s helped us go through things. His experience of going through cancer, you know, and all of that helped me because it, we both had life-threatening illnesses.
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'
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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.
I was just thinking about you, you know, you said your husband’s been, is ill as well at the moment and you’re obviously having to support him …?
Hmhm.
… as well, how, how does that work, with the two of you having to sort prop each other up in certain ways? Is that difficult?
It is difficult, yes because obviously he has down days, I have down days and we, we kind of try to dress it up so that we don’t’ put stress on the other one. And sometimes I think we get extra stress because you know we try and not stress the other person.
You know my husband had bad day yesterday and then I spent the whole day saying , “Are you ok, is there anything I can do for you?”. And if I’m having a bad day at the same time, I tend to think more on, “I just won’t say anything.”
And then maybe in a couple of days’ time, it will make my day even worse because I’ve, I’ve kind of built up to having a bad day.
So it puts a bit of stress on the relationship in some ways?
It does, yes.
Yeah. Understandably. Yeah.
But, I mean, we’ve been together for 27 years so.
So you’ve got a lot of strong foundation?
.. we’ve got used to each other. Yes [laughs].
Many people said that their spouse helped and encouraged them to make lifestyle changes, especially diet and exercise (see ‘Lifestyle changes’). Some people needed extra help and support from their spouse when they returned home and it could sometimes be difficult to get the balance right between being supportive and being over protective. Some people said they had lost confidence after their TIA or minor stroke (see ‘Back home’) and didn’t want to be left alone too much, but they also didn’t want to be mollycoddled (see ‘Emotions and feelings’).
David feels guilty that his illness has curtailed his wife Shirley's life and he sometimes worries about being too much of a burden.
David feels guilty that his illness has curtailed his wife Shirley's life and he sometimes worries about being too much of a burden.
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You’ve got that guilt that you’re carrying around because, as I said, I’m impinging so much on Shirley. She used to go out quite regularly and do various things. I mean, I don’t mean she was out all the time, she wasn’t. But she used to go to various inst, institutions and things and clubs. Yeah, not institutions, sorry, that was a wrong word, [laughs] clubs and, oh, the WI and things like that. And she has thankfully started to go again now we’ve got to the stage where I can be left for a little while. And she’s starting to get back into that.
And we have actually … yes, there’s something else that has happened is that we’ve got a oh, I don’t know what you call it really, it’s difficult to know what it is. It’s a, a sort of help group who come out and are either going to come out and spend three hours with me here so that Shirley can go out if she wants to for three hours or go up the garden for three hours. Or maybe they’ll, we’ll go out somewhere and Shirely can be here on her own for three hours you know so that…
So she can have a bit of a break?
..so that she can have a break, yeah.
And, I mean, is that feeling of not being left, is that a feeling that you don’t want to be left alone or is it, is there a sort of particular worry that if you’re left on your own something could happen?
That was how it started. It started off was, “Oh God, she’s going out what happens, you know, what happens if...” But now it’s, it’s expanded from that and I’ve got back to the stage where as long as certain medication is in certain places then, you know.
We don’t do so badly, I don’t think now.
So overall it sounds like you have had to make quite a few adjustments…
Oh yes.
..then…
Yes.
..to your everyday, day-to-day life really?
Oh, very much so. Yeah. And as I say, I think it’s [ha] the adjustments have not just been mine. They’ve been a tremendous amount of adjustments for Shirley well, you know.
And, as I say, this is one of the things that you carry is this guilt that you’re, not spoiling her life but, well, adding more to the burden as it were.
Despite some difficulties in some people’s relationships, most people coped with the changes to their lives and didn’t feel that it had significantly affected things between them. Nobody in our sample talked about difficulties in sexual relationships directly caused by having a TIA or minor stroke, though one woman mentioned that she now finds physical contact difficult. “Touch is very peculiar. Firm touch is fine, light touch is, it’s like flesh crawling. Which is difficult because as I’m married”. Some of the drugs prescribed to treat high blood pressure can have side effects, including erectile dysfunction.
Like Clare (above) some people said that they had become closer to friends and family since their illness, and that it helped them to realise how much their loved ones cared about them. Anne felt emotional about the way friends and family had reacted to her illness and found it difficult to talk about.
Keith was amazed by the support and friendship shown by his friends and colleagues after his TIA
Keith was amazed by the support and friendship shown by his friends and colleagues after his TIA
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And how have your colleagues reacted to your …?
Oh, being very kind and very generous and very concerned and lots of telephone calls and cards and very, very concerned and very supportive. Yeah, yeah.
I mean, one of the things some people say is that it helps you to know who your friends are?
It does, it does and it’s been stunning the number of people that have, that have been in touch. And when, when I first was off work I couldn’t get my fingers out of it, I just kept contacting people by emails and I wouldn’t let go. And I’ve one or two very strict messages from friends saying …
Get off the internet!
Exactly [laughs] Yeah, clear off. And I did. And I’m glad I did.
Many of the people we interviewed had adult children, most of who lived away from the family home, and some of them lived quite far away. Most people said that when their children first heard about what had happened they were often very worried and concerned, but that generally once they could see that their parent was recovering well it was easier for them. Geoff said that his son now takes him shopping as he isn’t able to drive any more, and his daughter came to visit at the time, but as she lives in Cornwall it wasn’t possible for her to be more actively supportive. Clare’s daughters travelled quite a long way to come and see her, and she said that it was ‘a bit of a wakeup call’ for them realising ‘that mum might not live forever’. Some people said they didn’t want to worry or bother their children too much and so would hold back from telling them too much about how they were feeling. Ros sometimes felt a little bit isolated as she lives alone, and would have liked more support from her adult children, but she said ‘my children are busy people, they have their own lives’.
Rich's children reacted differently when they heard about their dad being ill. His daughter coped by helping Rich through his recovery in practical ways, whereas his son was quieter and kept his feelings inside
Rich's children reacted differently when they heard about their dad being ill. His daughter coped by helping Rich through his recovery in practical ways, whereas his son was quieter and kept his feelings inside
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I’ve got two grown up children who, who helped, but, yeah, it was diff, it was a disruption.
And how did it impact on the rest of the family? Do you …
Well they were, they were upset obviously but they were all kind of mobile. I felt more sorry for Emma because she just kind of started a new job and she was going down to not far down to [town], you know, half an hour every morning on the train…
Does she live here?
She lives here, yeah, both Anthony and Emma live here and she found it a bit of a strain I think but, you know, she used to, I’ll say grin and bear it really, [researcher’s name].
No, a lovely kid. In the end …
Very supportive?
.. yes, very supportive. What I did is she unfortunately, various things she had to leave the job after six weeks, so she became my ‘personal carer’ for a month while she found another job. And then she found another job very quickly and she was kind of off and running.
Did she get upset at all or how did she cope with it?
I think she coped very well with it. The person I’m not sure I’m just going back now to when I was in [name] ward when the three of them came to visit me for the first time after I’d been admitted, I think Anthony was. Now Anthony, the eldest, doesn’t show his emotions very much, he’s quite, completely different to Emma. Emma’s more like me, she’ll chat to anybody for want of a word. Anthony I think keeps it in himself
Michelle was in a slightly different position from most of our interviewees, being much younger than the other participants. Having had both a TIA followed by a stroke at age 26 Michelle found herself having to rely on her parents for care and support which meant that she sometimes felt like a child again. “I guess being so young you don’t expect one day to need your mum and dad to do things for you that you could, yesterday you could do for yourself.” Michelle also talked about how difficult it was to explain her health status to potential new partners. Michelle felt upset because if her TIA’s had been recognised and diagnosed earlier she may not have gone on to have the stroke (see ‘Symptoms’, ‘Getting a diagnosis’ and ‘Communication with health professionals’).
Michelle finds it hard to contemplate starting a new relationship because she thinks the fact that she's had a stroke at such a young age puts people off
Michelle finds it hard to contemplate starting a new relationship because she thinks the fact that she's had a stroke at such a young age puts people off
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I think relationship-wise when you first meet somebody and say, “Oh yeah, I had a stroke when I was 26” that’s kind of hard for somebody to get their head round and they kind of run away from it a bit, so…
Has that happened?
Hmm.
Yeah. And does it make you feel upset talking about it to somebody else? It kind, knowing that that might be their reaction?
Yeah.
Yeah?
Because it doesn’t matter how much information I can give them, they’re still too scared if you like to take on the situation, so in comparison to how scared they feel to how I feel.
Sometimes other people’s comments could feel insensitive. Clare remembers how her sisters, who were both nurses, told her that they could still see the ‘remnants of stroke’ and she felt hurt as she was trying to focus on her recovery. After a time when there were no visible signs left, Clare felt that it could be difficult for friends to recognise that she might still be feeling low or out of sorts.
Clare's sisters told her that she still had some signs of facial droop after her TIA which upset her. After a time some of her friends would comment on how well she looked but didn't realise that she was still feeling emotional about things
Clare's sisters told her that she still had some signs of facial droop after her TIA which upset her. After a time some of her friends would comment on how well she looked but didn't realise that she was still feeling emotional about things
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What about your family, your wider family, how did they react to your …?
They came into hospital to see me. Both my sisters are nurses. My one sister said to me, “Oh it looks, oh I can still see the remnants of your stroke.” Which just made me want to embed my fist into her face.
And what was she meaning by that? What was she …
My face was still, still dropping.
Right.
But none of my friends or my husband would say anything. So I was ignorant to the fact. Because I had a very slight limp when I get very tired and also I have a muscle spasm in my left leg for a long time …
Right.
.. which has only just gone.
And did it just feel hurtful when, if somebody pointed those things out?
Unbelievably.
Yeah?
You know, “Oh, you, I can still see the remnants of your stroke because your face, your mouth is down one side.” Well, I had no idea. I had no idea. Why tell me? I’m not going to look in the mirror. Which is then what I did was look in the mirror and I started, you know, smiling, is everything smiling, you know, correctly, and so on. So, yeah.
I think, I look OK, this is what used to really irritate me because people would look at me and say, “Ah, you look so well, Claire.” And I’d think, “Well, yes, maybe I do,” but then, you know, it’s not something outwardly that, you know, it’s like anything else, the unseen disability really, isn’t it?
When people if it doesn’t bleed it doesn’t hurt type of thing.
I know some people have said to me that, you know, people will say, “How are you?” but actually they don’t really want to hear?
Yeah.
About that, and it’s, did you find that?
Oh I love, oh no, I love it when people say, “How am I?” because I’ll tell them and then they wish they hadn’t asked.
A neighbour knocked on Ros's door to see if she could help when she was brought home in an ambulance, and since then has become a good friend
A neighbour knocked on Ros's door to see if she could help when she was brought home in an ambulance, and since then has become a good friend
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I would say talk about it if you’ve got a neighbour or a friend or somebody that, you know, is quite happy to come and sit with you.
Try and talk, talk about how you’re feeling, you know. Maybe they won’t understand it but try and talk about it because if you hold it in I think it, it’s like a volcano, it will just erupt. If you’re on your own and you don’t talk about it, you go out on your own, you come back on your own, I think you need to talk to people and see people, which I, I don’t see enough people. Hm.
I will say there has been one positive thing that happened to me after the mini-stroke, when I came back in the ambulance a lady knocked on my door and she said, “Ros, what’s happened?” And since that day, she’s been a friendly neighbour to me. So, yes.
So that could open up ..
It was …
… new avenues …
.. a blessing in disguise.
Yeah.
And, yes, and she took me to the doctor and, and if I need anything big that I can’t have it, carry, she’ll take me in her little car and, yeah, yes. So out of that, out of my stroke…
Some friendship?
.. I’ve made a friend. Yes, so that’s a good, that’s a good thing [laughs].
Yvonne found that it could be difficult talking to friends about what had happened to her and how she was feeling because they didn't really understand what a TIA was
Yvonne found that it could be difficult talking to friends about what had happened to her and how she was feeling because they didn't really understand what a TIA was
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When I say to people, “Oh, I’ve had a stroke.” “Oh my God, you can move.” And, “You’ve recovered really well.”
Do you think there’s an age association as well that people tend to associate it with older people?
Yes, I do. Yes, definitely. You know, because a lot of people have said to me, “Oh you, but, you know, you’re, you’re really young to have stroke.” And I thought, “Well, you know, children have strokes.”
It’s just one of those things, you know. If your body decides you’re going to have one then you’re going to have one.
I suppose what, one of the things that it makes me think about, you know, when you were talking about your own sort of self-identity is that you have to kind of then build that into your story about yourself, if you like, about how you talk to your, about yourself to other people?
Yeah.
And deal with their responses?
Absolutely.
Is that, do you find that quite difficult?
It is quite difficult and sometimes you just don’t bother telling people. And, you know, people that you don’t’ know very well will say, “How are you?” and you, you tend to think, “I'm fine thank you.” “Yeah, everything going well?” “Yeah, fine thank you.” I don’t, I don’t, I don’t really want to bother telling people, “Well actually, no, I’ve been quite, you know, quite poorly really.” [laughs].
Do you find sometimes, I mean, quite often people ask you how you are but they’re not really …
They’re not really interested.
.. wanting to hear the details [laughs]?
No, exactly, yeah, so yeah, all my good friends and that, you know, have been quite shocked. And, I mean, my husband was telling one of his friends and she turned round, when he said, “Oh, Yvonne’s had a mini-stroke,” she was, “Oh right, OK, whatever.” And then the next time he spoke to her, she said, “Well what did it consist of?” And, and he told her and she said, “Oh I didn’t realise you got symptoms like that.”
“I thought it was just kind of like a headache.”
So, I mean, do you think that there’s a need for more general awareness?
I think there is.
Gilly summed up how important it is to make sure that you keep talking to friends and family to avoid feeling isolated and alone and to keep your spirits up.
Gilly stressed the importance of keeping in touch with your friends even if sometimes you don't think they'll understand what you're going through
Gilly stressed the importance of keeping in touch with your friends even if sometimes you don't think they'll understand what you're going through
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Keep friends. Keep friends. Keep the channels of communication open with friends and family. If we can’t do it the way that we normally do it do it another way. I found talking on the phone very difficult. And I still do. Email. There’s Facebook. There’s Twitter. However old we are. There’s postcards. There’s letters. Meet up with people for a coffee. I’ve had to learn that I need to do that otherwise I become very isolated.
I’ve got to take a risk with people. I’ve got to take a risk they won’t understand and they’ll get offended. Or I’ll cry. Well I might cry, in fact it’s probably very likely I might cry, but that doesn’t matter, they’re my friends, they’re my family, they’ll understand.
And if they don’t, there’s nothing I can do about it. That’s their problem then and it’s not mine and I, yeah.
Last reviewed June 2017.
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