Emotional Impact of stroke
Strokes usually come out of the blue and can bring dramatic and unexpected changes to people's lives. Most of the people we spoke to were initially shocked and worried about the changes in their body and how they would cope with the things they were so used to doing.
Several people said that they felt overwhelmed and hopeless and had broken down in the hospital. Sometimes, however, this initial hopelessness turned into a determination to get better.
- Age at interview:
- Is a married father of 2 adult children and retired charity worker. Ethnic background/nationality' White/English.
One thing you just touched on earlier was the, I suppose you'd mentioned about depression and perhaps feeling very emotional and crying at different stages. Would you mind talking a little about that?
No, one of the, one of the symptoms of stroke is emotional instability if I can put it that way and I remember I burst into tears the first time I, my, my son came into the ward. My youngest son, my eldest boy is in, in the Navy and he wasn't able to see me at all during the stroke, but yes, and, and I got very emotional a few times and when I was taken to the toilet the first time in this sort of cage, I mean, I burst into tears after that because I thought, 'Oh dear, what on earth, you know, what on earth, am I going to be like this for the rest of my life?' being carried to the loo like a, and I overcame that by, by will and I turned it into determination that I was going to get better. I wasn't going to let this thing beat me into the ground. But I'd say most people get emotionally, very emotional. It's probably something to do with hormones or the brain or something.
Others felt that the stroke had very little emotional impact on them or that they were optimistic that they could beat it right from the start.
- Age at interview:
- Is a widow with 1 adult child and is a retired writer. Ethnic background/nationality' White/German.
Mother' Yes. I was not at all depressed [laughs].
Daughter' Only at first, maybe a couple of '
Mother' The very first day, angry, more angry in the first [laughs]
What were you angry about?
Mother' About the change. Yes.
And how did you feel when you realised that it was a stroke that you'd had?
Mother' [Sighs] I felt a little bit sad but not long, not very long.
And you were very determined to get better?
Mother' Yes. Yes. Yes. Absolutely.
And do you think that helped you to get back to normal?
Mother' Yes absolutely. And the cheerful atmosphere in the house and the lovely family [laughs]. It was more important than my behaviour.
“Why me?” was one of the commonest questions that people asked. Some people felt angry that the stroke had happened to them and found it difficult to come to terms with the new person they felt they had become. Others reflected it was just one of those things and older people sometimes felt it was just a consequence of their age. A man who had a strong faith reflected that it was just a natural thing that perhaps was meant to happen to him.
- Age at interview:
- Is a widow with 1 adult child and is a retired shopkeeper. Ethnic background/nationality' White/Scottish.
Do you think it's changed you emotionally at all?
No. I don't think so' Except it's' it's' I get frustrated' with not being able to do what I used to do but I've accepted that now. I don't know whether I'll be able to go back to being independent again. I'll be dependent on other people.
How do you come to accept something like that?
Oh well, I accept it quite' quite readily' maybe because I realise my age' You can't live forever [laughs].
- Age at interview:
- Is divorced with 3 children. He is a retired credit controller. Ethnic background/nationality' Black/ African.
Why do you think? What has helped you?
Because if you have faith and obviously if something happens, you've got to accept nature. This is nature. You've got to help yourself and nature will help you but if you sit tight, then you haven't got a chance. So I go myself, my mind, no, it shouldn't happen to me. It can happen but at least it has happened so I have to fight this battle myself. This fight is what I do my will to live, my will to do something. That's why I'm here. Other than that, I don't think I could have made it.
When you said if you have faith, do you mean religious faith?
And that has made the difference?
That makes a lot of difference, yes.
And are there religious people who have been in any way involved in?
Oh yeah. When I was, when I was in hospital, they used to come there, a lot of people used to come there, encourage you, encourage you, as preacher, you know that they do.
Others, who had previously had a strong faith, felt it had been shattered although some said that their faith returned with time.
Loss of identity
Some people found that their stroke had a huge impact on their life and felt that they were no longer the same person. One man felt that he was no longer 'a fighter', another that he had a different outlook on life and that whereas he had been outgoing previously he now preferred to sit quietly. Another commented that life would never be the same again.
Many struggled with the idea that they had become disabled. This was exacerbated by other people's reactions to disability, such as not looking at people in wheelchairs, and by how difficult it could be to go places if you have limited mobility and if buildings or transport was not accessible. Some people said that part of a process of acceptance was accepting the “new you”, learning new ways to manage the disabilities and finding new activities to replace those that were no longer possible.
The transition from hospital to home was sometimes particularly difficult as some felt that they had settled into a new world in the hospital and no longer belonged in the outside world.
- Age at interview:
- Is a divorced career counsellor but is not working due to strokes. Ethnic background/nationality' White/English.
How long were you in, in the hospital there?
I was in the hospital, the major hospital for 7 weeks. Yeah. I would have been less if I could have got out quicker actually because I was, as I say, I was, I was not very happy in there although I did see quite a lot of my friends because I was in London, so lots of people came to see me.
But one of the things I became increasingly aware of, was that I no longer belonged, and they used to want to take me out when I got stronger, in my wheelchair. They used to wheel me across the busy London road, I was, they were allowed to do this, and take me for a cup of coffee or something like that. And I went out into the world and I thought, 'I don't like this'. I used to walk out here in this world in high heeled shoes and I can't do that now and I don't want to be out here anymore and I don't belong out here in this world. And what happened to me in a way was hospital became home. It felt safe and it felt like where I belonged because I was newly disabled I also had a lot, a very bad short term memory problem, you know, my brain was quite, still quite fuzzy really. And I felt safe there, and the whole of the outside world that I absolutely love and I love London I no longer, I no longer wanted to be out there.
And that was particularly brought home to me in a way because when I would go from the twelfth floor, which we were on, the neurology ward, down to the ground floor to the, physios, down to the physiotherapists, usually in lifts in the wheelchair, and that was when it started really because children were then my height and they'd stare at you, like children do, 'Hmm, what's she doing in there?', and I used to look up at adults and they would not look at me. They wouldn't look down. They would just, they would look and move their heads so as not to look at me and I thought, 'God, I'm an embarrassment, they don't want to look at me', and that made me think, 'I don't belong anymore and I'm different and I'm disabled'. And that made me absolutely determined to get out of the wheelchair. I was absolutely determined to walk. That I was not going to live in a wheelchair for the rest of my life because I had been told that I would never go home and that I would have to live in care for the rest of my life.
Fear and anxiety
Fear of having another stroke was a constant worry for some making them feel vulnerable about being left alone. One man who had been on his own when he had the stroke did not like being alone now and always made sure his wife had her mobile phone.
- Age at interview:
- Is a married father with 2 adopted, adult children. He is a retired lecturer. Ethnic background/nationality' Indian/English.
The one thing which always bothered me was this experience always made me feel as though I'm not far from death, it could happen any day and that way I used to get anxious very soon. I used to feel that my wife should be around me, she should not go out, if she goes much more than an hour, then I'll begin to phone and find out where she is and she doesn't carry mobile, she doesn't keep in technology and whole lots of that. But because of the good neighbour she has gone away, somebody will come and sit with me to talk to me and find out what I need. So in that way I think I've been very, very lucky. Someone or my friends who their children all, they call me uncle and they will come down, you know, to stay with me for a while, ask aunty that what uncle needs and so they kept busy but this, the doctor thought that it's symptoms of depression I think started developing which was a bit sad. Every time I will see at funeral, if I will go to the funeral, to anybody, it will be very difficult. Normally if I'm going to funeral, I have to speak there and that is first thing I learned that, no, I should not. But some of the family would expect me to, even though I speak a sentence but they would have want me to say and of course attended many funerals of my friends who passed, passed away and was a bit of shock and my wife realised that attending a funeral is not a very good thing. So recently there has been two or three but I couldn't make it.
But the doctor recommended some sort of, it is not that antidepressant but yes it definitely keeps my nerves control, citalopram, 10mg dose, and that has given me a bit of patience now. At night, I can be by myself I will not be scared of it. But still, you know, all the time, the key's in the door [laughs], when I lock it and go upstairs. It will come to my mind that if, if something happens, how would they open the door.
Others tried to stay positive and take steps to change their lifestyle and take medication to prevent another stroke. (See 'Preventing another stroke' Changes in life style')
Some were fearful about the limitations of their body, particularly fear of falling, or felt vulnerable when they were out and about because they now had to use a stick or wheelchair. People whose ability to speak had been affected sometimes felt anxious about speaking in public.
Loss of confidence
Fear and anxiety could often lead people to feel less confident about doing things they would have previously done without thinking. This could even affect things that were not necessarily limited by the stroke. Confidence could be regained but it had to be built up over time by practicing the problematic task. Some people found it helpful to talk with a health professional and learn techniques to deal with anxiety.
- Age at interview:
- Is a widowed retired legal secretary with no children. Ethnic background' White/English.
How about your sort of confidence in everyday activities and doing things in your life? Has that been affected?
Stroke takes away all your confidence completely. That is one of the things definitely. It takes away your confidence completely. You have to learn to build up your confidence. It takes a long time. I don't think you ever regain full confidence completely. No. You're always wary of things, you're not sure about anything, even just going for a walk, you don't know that you're not going to fall over or you're, something's going to happen. You're scared.
The one thing they tell you, that scares you a bit because when you, before you leave hospital, they say to you, 'Now you've got to, you've got to walk. It's important that you set yourself goals so when you get home and you start to walk, do a little walk, a little bit one day and then the next day maybe do a few more steps. But always make sure that if you're going on a walk that's a little bit longer, make sure there are seats so that you can sit down.' That scares you a bit because you're sort of thinking, 'Oh dear, you know, I'm not going to be able to go anywhere where there are no seats, you've got to have seats everywhere, you've got to sit, always be able to sit down'. That is scary and so going for a walk suddenly becomes a big thing. I miss walking. I think more than anything I miss walking. I can't walk very far and I miss it. Having a dog I think is a really good thing because I had to go out every day, even if it's just a tiny little walk down the road, I've just had to do something and that has made me push forward. I feel, in company, I feel' I don't know how to describe it but this, it's this feeling of confidence. Whereas once upon a time I would have been able to stand and feel quite OK, quite confident about everything, I'm not any more. I'm thinking all the time, 'Am I going to be able to stand here? Will I be able to sit down? Is the pain going to be really bad? Am I going to start perspiring?' Everything. You're thinking all these things all the time. So complete lack of confidence really. I don't think you ever get that back. I think that is one thing that goes completely. You're very aware that you're physically abnormal.
- Age at interview:
- Is a widower living with a partner with 2 adult children. He is a retired management consultant. Ethnic background/nationality' White/English.
Yeah. Again, my sister-in-law, the GP, when she saw me about a year ago, she made some suggestions as to what I could do and that was one of the things. I was beginning to feel a bit depressed and she suggested a cognitive behavioural therapist and I did go to that a few times but I didn't think it would help very much.
What sort of things were they doing at the, the therapist?
Oh, just basically talking to me like we are now, a bit like that. But since then, my GP has arranged for me to see a psychologist via the NHS, which is quite impressive because usually it takes ages to see these people and I've seen him a couple of times and he's given me some, well, he did some diagnostic tests first of all which I never got with the CBT specialist and he said it wasn't so much depression it was anxiety more than depression.
What sort of things do you feel anxious about?
Well, anything that's a bit sort of, that is going to require me to you know, to tackle something that I might not be up to, you know, even if I get several things in brown envelopes in the post in the morning, I think, 'Oh what on earth this, is this something that I have to cope with', you know, forms the tax inspector or anything like that, I sort of think 'Oh', you know, 'I am going to have trouble coping with this', although I don't actually seem to have it, I do actually have had forms from the tax inspector and I have managed to reply and write letters to people and that sort of thing, so I am managing to do it but it doesn't alter the fact that I do worry, I do sort of feel concerned about whether I'm going to be able to cope. Whereas before, I used to consider myself a great coper. Also, I was a great planner. I loved planning and I had a great sense of time. I always knew what the time was and how much time I'd got to do things and I worked things out so I didn't have to do anything in a, in a rush. And that's something I did a lot of and enjoyed. I can't do that. I don't do that any more.
Many people, and particularly men, had noticed that they more easily became emotional and cried. Although this sometimes happened in emotional situations such as funerals or on hearing bad news it could also happen in unlikely situations, for example watching sport on television, hearing the national anthem or listening to a Christmas carol. Some found it improved over time but others found that it remained and would occasionally happen when they were least expecting it.
- Age at interview:
- Is a married father with 1 adult child and is a retired lorry driver. Ethnic background/nationality' White/Scottish.
So you were saying about how the stroke's affected you emotionally?
Well'I was' one time I was at a Christmas meeting where the minister was singing songs and'he came out with a song, song that I couldn't just bear for him to sing it. And you know what it was? It was' I can't mind what it was now that, that one with' I can't just think what it was.
How did it make you feel when he was singing it?
I just told him stop because I couldn't listen any longer and it was nothing wrong there 'Oh' he said, 'You're not the only one that happens to'. 'But', I said, 'Well', I said, 'You can go, you can go ahead now and I'll try and have a cry'. But I actually cried. And he was singing this song anyway but I just couldn't bear it. And it really was' it wasn't nothing to cry about either but I couldn't help it.
Do you find that with other things that, that suddenly upset you for no reason?
Oh yes. There was other things and it would start the same way likely but it has, I was at a wedding once and it was the same thing there. They started and I just, I couldn't do nothing about it.
Do you understand that that's part of having a stroke?
Aye. That maybe came with the stroke, you see.
Has anybody explained that to you?
No. Nothing, never.
Emotional lability is a very common problem after stroke. Some people had been told this by a health professional and found this simple knowledge reassuring. Others were unaware that it was normal and had felt embarrassed about talking about it.
- Age at interview:
- Is single and living with his partner. He was a shop fitter but now medically retired. Ethnic Background' White/Scottish.
Obviously, it's been a really hard time for you?
And I was wondering, how has it affected your emotions?
Well, at first, I used to cry all the time but now I get, I can do anything.
And you say you were crying a lot of the time?
Did you get any help at all?
Well, yeah. The nurse and the speech therapist, the OT and that, everyone helped. Yeah.
And did they explain why you were feeling like that?
Oh, they said because your, my, your emotions are all over the place.
And did that help to hear that?
Yeah, yeah. Like everything else, it's getting better and better.
Yeah. And did you ever have to take any medication for that?
No, no, no, no.
No? OK. And how about your temper? Did that, was that affected?
Yeah. Oh I used to swear and that. I just used to crack up sometimes.
What sort of things used to make you angry?
Right. And how did you take that out on people around you?
Yeah, yeah, yeah. [my partner] had to all the time at first.
Is it better now?
Oh yeah, yeah.
- Age at interview:
- Is a married father of 2 children. He is a retired rail worker/retired shop assistant. Ethnic background/nationality' White/Scottish.
You know, we talked earlier about sometimes people worry that they could become more emotional?
Aye. Oh yes, well that is a problem, I'm sure but it's, but it, it's alright, people get to know you and understand that this is all part and parcel of the, of the disease and it will perhaps get better, I don't know but he said it would, it would be a long time, it would bother you for a long time, the doctor, and he was a very good doctor on strokes and the first thing he said to me, you see, so it's obviously, must be something that even the doctors must know to tell you so that you're prepared for it, you see. So as I said, otherwise, I think it is getting, it is getting better now a bit but oh, when you come home, when at first it was very easy to break down but it gets, it is, it is easing off now and' as time goes on. I think a lot of it too depends on what's happening in your life.
It was common for people to feel down after their stroke and many people we spoke to said they would occasionally feel down or depressed when they realised they could no longer do something. Some, however, had found themselves down and lacking in motivation most of the time and were eventually diagnosed with depression. One woman described it as being “locked in a box”. People who have depression after a stroke were sometimes prescribed an antidepressant which could help. A few had some counselling although this was not always readily available and there were long waiting lists.
- Age at interview:
- Age at diagnosis:
- Ralph is 69, retired, and resides at home on his own. He experienced his stroke three years prior at age 66. His ethnic background is White British.
Last reviewed August 2013
Last updated August 2011