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Stroke

Social support

Many individuals spoke about the importance of social support as they recovered from their stroke. They spoke highly of family and friends who rallied around to assist the person as they adjusted to new routines and environments.

When social support is limited or non-existent
In some cases support from friends, family or a significant other was not available. One man commented that formal care providers should not assume that families and friends are available and that this should be taken to account in an individual’s care plan. On the other hand, a woman who had been divorced felt that the absence of a partner forced her to do more on her own which helped her recovery and regain independence.

 

Ralph feels that care providers should not assume that family and friends are always available.

Ralph feels that care providers should not assume that family and friends are always available.

Age at interview: 69
Sex: Male
Age at diagnosis: 66
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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 that”. 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.

 

Jackie explains that being unmarried forced her to do more for herself and be less reliant on...

Jackie explains that being unmarried forced her to do more for herself and be less reliant on...

Age at interview: 61
Sex: Female
Age at diagnosis: 53
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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.

 

Initial impact on family and friends
Individuals who had social support noted that the initial impact of the stroke on family and friends was nearly always shock, disbelief and fear, particularly as the stroke was often unexpected. Some people felt that they had been very close to dying and that this had been upsetting and difficult for their family to come to terms with. 

Most people said that families and friends rallied round and were a tremendous support. A few, however, took some time to adjust and where initially reticent to visit the person in hospital. One younger woman felt that she needed to protect her parents from the stroke and found it easier to 'cry on the shoulder' of a social worker rather than worry her parents.

 

Her parents were badly affected by the stroke and didn't initially come to visit her. She wanted...

Her parents were badly affected by the stroke and didn't initially come to visit her. She wanted...

Age at interview: 54
Sex: Female
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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 she's, 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 she's 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, she'd 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. 

Visits in hospital
Visits from family and friends in hospital were invaluable to most and several people commented on the huge time commitment and sometimes long distances that people travelled to visit every day. Some people had not wanted to see anybody for the first few days after the stroke or had been concerned that young children might be scared by slurred speech or appearance. 

Impact on young children and grandchildren 
The impact on children and grandchildren caused considerable concern particularly to those who had young children. The daughter of one woman had not wanted to visit her in hospital which she found upsetting but totally understood. Some noticed that their grandchildren were more wary of them because of changes in their voice or appearance although they usually came to accept the changes with time.

 

Their daughter's son was initially wary of her husband because his voice had changed by the...

Their daughter's son was initially wary of her husband because his voice had changed by the...

Age at interview: 62
Sex: Male
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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, he's, he's 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 , he's just going to grow up accepting him as he, as he is. 

Two women with young babies had been eager to continue caring for them as they were changing every day and they hated missing out. 

People often worried about the long-term impact of their stroke on their children, on top of the usual life changes young people go through, and made huge efforts to try and make their lives as normal as possible. Whilst some felt that children had come through relatively unaffected a few noticed problems months and even years later which had required counselling. 

 

She tried to keep things as normal as possible for her daughters but worries that they have been...

She tried to keep things as normal as possible for her daughters but worries that they have been...

Age at interview: 44
Sex: Female
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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, we're 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.

 

A few years after her stroke her son needed some counselling because the experience had caused...

A few years after her stroke her son needed some counselling because the experience had caused...

Age at interview: 41
Sex: Female
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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, he's very young, he's 8, he's fine, he'll get over it' and you just don't realise how much they've taken in I think. 

People often felt that their impairments interfered with their roles as a parent or grandparents, for example being able to read or help in education because of communication difficulties or worrying about holding a child because of weakness and numbness. 

 

Worries about holding her young grandson because of loss of sensation but hopes that things will...

Worries about holding her young grandson because of loss of sensation but hopes that things will...

Age at interview: 55
Sex: Female
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My grandson, aye he's 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 he's 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. 

Hopes and aspirations for children and grandchildren often spurred on recovery or kept people going when they were feeling down. Events like seeing a child or grandchild married were important goals.

 

Set himself a goal of being able to speak and stand for his daughter's wedding and got a standing...

Set himself a goal of being able to speak and stand for his daughter's wedding and got a standing...

Age at interview: 62
Sex: Male
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Husband' Yes, 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. 

Wife' And 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?

Husband' Yes. It's the only wedding I've been to where somebody gets a standing ovation for saying I do. 

Changes in roles and responsibilities
Regardless of age a stroke can have a huge impact on people's roles and responsibilities in the family and on their levels of independence.

Most of the people that we spoke to returned home after their stroke and many of these had a partner at home to help out. Those without support sometimes temporarily or permanently stayed with or got help from relatives - younger people from parents and older people from adult children. Care was sometimes provided through the social services (See 'Continuing care at home and institutional care after a stroke').

People who had had a stroke found it difficult that their spouse had to take on extra responsibilities - they felt guilty sitting by and watching them struggle although said they were very grateful for the support. Men in particular found it difficult to see their female partners doing manual tasks or dealing with finances. 

Some partners had initially taken time off work although most eventually returned. One man felt guilty that his partner had to come home from work and start cooking and cleaning, tasks which they used to share. He was pleased to be able to get back to helping out. Another who could no longer work found it difficult to take on household chores while his wife went out to work. 

 

He felt guilty seeing his wife go out to work and then come home and do the house work.

He felt guilty seeing his wife go out to work and then come home and do the house work.

Age at interview: 54
Sex: Male
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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 wife's had a hard day and she's 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 there's 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.

Many felt that they had lost independence because they were so reliant on help from others. This was particularly a problem when people needed help with washing and dressing or could not go out or travel alone. 

Some had found it frustrating because they wanted to resume doing some of the things they used to do and were not allowed to by concerned or over protective relatives. Whilst this could lead to disagreements several people advised pursuing the things that you wanted to achieve as it helped with recovery and overall mood. 

 

She had several disagreements with her mother because she was helpful after the stroke but was...

She had several disagreements with her mother because she was helpful after the stroke but was...

Age at interview: 44
Sex: Female
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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 she'd 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, she'd bring it up to bed. I mean, she's 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 we're 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. She's, she's 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’s not something that’s easy to accept.
 

Advises other people's families to not discourage the person from trying to do things for...

Advises other people's families to not discourage the person from trying to do things for...

Age at interview: 69
Sex: Female
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So what's important? What would you say to people's 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. 

One woman said that her children were always suggesting things which she did not necessarily want or need.

Support for family members
Several people recalled that there was very little support for family members, although some said it was available but was hard to access.

 

They think that support is mainly given to the patient and should be more readily available for...

They think that support is mainly given to the patient and should be more readily available for...

Age at interview: 62
Sex: Male
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Husband' Well, 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].

Wife' Although there was if you found out about it but the social worker'

Husband' It 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. 

Future concerns
One father commented that he is concerned about what will happen to his son (who had a stroke) when he and his wife pass away.
 

Friends 
The support of friends had been important to many people particularly those without family support. Initially visits in hospital and cards and letters had given people a real boost. Later people valued trips shopping, days out and people that came to visit them. One man had been on a weekend away with friends, who had done everything to accommodate him including lifting his wheelchair. Whilst some people valued being able to talk about the stroke with friends others preferred to talk about other more enjoyable things.

 

Lives alone but feels her friends have been very supportive and have given her lifts everywhere.

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Lives alone but feels her friends have been very supportive and have given her lifts everywhere.

Age at interview: 83
Sex: Female
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You said that you sort of suspected it might be a stroke. What made you '?

I did because of my balance and that, you know, and especially when I collapsed and my left leg wouldn't work properly, I immediately thought, 'Oh a stroke' and I said to the person who came on the Monday when she told me, I said, 'Well'' she said, 'Is that what you thought it was?', I said, 'Yes. Yes. That's what I thought it was.'

So when they actually confirmed it, how did you feel?

Well, I suppose I was a bit nervous and apprehensive but I always think what will be, will be, you know, and I must, I must admit the church family, they're such a terrific support to me, they really have been. I don't know what I should have done without them, you know, living on my own, being on my own, but in fact, I've got to start walking a bit now, I'm taking lifts everywhere. This won't do, you know, I must get some exercise, which I am doing. I think, I do think very positively and I try, I try really hard because, you know, a lot of people say, 'You've done very well', you know, I really do try, you know. I don't just sit down and mope about it, I really try. I think, you know, I think it's obvious, to be, to be truthful, in the back of your mind, you know, you've had one stroke, I know you may not get another but on the other hand, you sort of, it's in the back of your mind that you may, which is, I think it's natural, to be quite honest. 

 

His friends were happy to take him away for a weekend and didn't have a problem with him being in...

His friends were happy to take him away for a weekend and didn't have a problem with him being in...

Age at interview: 47
Sex: Male
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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, there's 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, 'We'll 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. 

Not all people kept up with friends. Some said that friends reminded them of the active person they used to be and did not keep in touch. Others said friends drifted away and were not willing to make the effort to visit them. Older people found that their contemporaries also experienced poor health. Whilst this meant that they were sometimes understanding it also made it difficult to stay in touch.

Meeting new people
Strangers and less close acquaintances were sometimes unkind in the things that they said or did. Some people had been accused of being drunk because of a stagger or limp. Those in wheelchair had occasionally been ignored and some thought that people associate stroke with a mental impairment.

People with speech impairments felt it was important for them to explain that their problems so that people would be patient and speak slowly if necessary (see 'Speech and communication after a stroken'). 
 

Last reviewed June 2017.
Last updated August 2011

 

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