Behaviour changes (non-YouTube version)

Couple holding hands

Changes in behaviour are more common after stroke than most people realise. In general people know that a stroke causes physical problems but because the function of the brain is so complex, aspects of the persons behaviour can also be affected. As a carer you may be the first to know there is a problem if the change is subtle. In some people the change may be very obvious. It is difficult to predict if the changes can improve, some people do not have a permanent change. However there are no guarantees. There is usually a period of adapting and coping involved by the person themselves and in you as the carer.

The following people are speaking about their effect of stroke on themselves and their family.

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Fran and Derek

How did you feel about having these difficulties with your mood?

Again very frustrating because it is affecting my family life, to a certain extent.

In what way do you think?

I can be a bit nippy with my partner and the kids, again just out of frustration. And I’ve dealt with that one as well

And how did you do that?

Again just… its just a matter of taking away your problems, sitting back and thinking through and realising why you’re doing this.

And remembering why you’re doing this and then thinking of a solution and applying the solution.

Did they notice any changes in you?

Oh yes definitely.

In day to day activities and things?

I used to muck around with them, now I couldn’t. So again… it was mood changes and I wasn’t so happy go lucky as I was before.

So they’ve had to deal with that as well but they dealt brilliantly with it.

Do you talk about these things with your family?

Oh definitely when I do something stupid we all sit down and… try and explain with each other what the hell… I’m doing, why am I thinking and doing what I’m doing so we find that quite… good.

They understand me a bit more from doing that.

Did you ever have instances when your family were saying one thing and
you felt that you were unable to understand why they were saying that?

Yes… oh very often, as I said before I used to say things and do things that were way out there. And my partner especially would sit me down and say “why are you doing that? Why can’t you do it this way like you used to?” and I’d just say “well I don’t know, I don’t think the same now”.

Luckily I’ve got the best partner in the world who’s got the patience with me to actually sit down and talk to me and explain to me what I’m doing wrong etc etc. and I can… sit back and think yeah she’s right aye, definitely

Fran and Neil

And then you had this meeting with your wife present.


How did you feel about her coming along to hear all this with you?

I thought that was crucial actually, I mean from her point of view it was. She was… she was more angry than I was from the stroke.

…and I don’t know if that was a combination of me in the early years of the… early months of the stroke

Just [sigh] you know just still confused

You had a lot to think about?

Yeah and so I was more… I was less angry about it. But my wife was… angry about it you know, from saying you know, why has this happened to us, sort of conversation.

It was good for my wife to come to the sessions with a psychologist, because he could explain to her what was going on and why Neil was doing this, but more importantly it allowed a psychologist to explain some of the issues that I was struggling with. That I would forget to explain when I got back to her later on.

And how was the effect on the children, because they were quite small weren’t they?

I think that is an issue that really needs to be looked at more and more. Because especially if the children are young, as mine were…

I think with children people tend to, certainly if I think back to my time so, Neil’s had a stroke, friends are fantastic, support are great.

We came back from the hospital, support for my wife were wonderful, you know, there was meals made, lots of support wonderful support.

For the children the conversation would be “how are you?” and they’d go “yeah fine”, because they are really young and so they’re left from that point of view.

I am…well I know today actually that the effects of what happened in Arran when they were 8, 3 and 11 has affected them for life. Because it was such a shock to… see what happened to dad.

So I went to the hospital, the cottage hospital. We went to the harbour and they put me into the ambulance and I can remember the doors shutting and my daughter bless her going bananas absolutely screaming.

Sam, who was 3 at the time just completely confused and my eldest son was upset as well.

Now that obviously psychologically has a huge effect on them, I think and still today. You know my youngest out the blue will say “you remember when you had that stroke Dad at Arran?” and he’ll just say something completely out the blue, so its definitely affected them.

…what the outcomes will be I have no idea. I mean some of them might be good [laughs] because what it did do, it put us together much closer as a family because I was there.

You know far more than I used to be so there were some benefits in the long term I guess. But I think psychologically it’s really tough on the kids.

They just don’t really understand it or to be better… people aren’t explained
properly to them what’s gone on.

[in language that they can understand]

The language they can understand. Yeah.

Fran and Marion

Again coming back to your family once you’d started to see the psychologist, did you tell them about what was happening?

Oh yes, I started… my daughter, as I say is very close to me and I started telling her she was very interested to find out you know what and how this had actually gone.

And I started explaining this and telling her, and she actually said to me within a very short period of time, she said the difference is absolutely
amazing, she said because you really are now starting to believe in yourself and you are believing that you can do these things.

Fran and Murdoch

So how did all this affect your family?

I kept most of it to myself. Both with my partner and also with my… I’ve got two grown up girls. I very rarely talked.

In fact I think I spoke to one of them at one stage… but didn’t really.

This was my problem and I wasn’t going to pass it onto them.

That’s the way that I viewed the thing at that point.

So what’s one of the most important things you’ve learnt out of all this entire process?

Just sharing things with people. Opening up, trying to create a
situation where, if you can find that opportunity to do that, is to seek out that opportunity you know.

It might not be appropriate to speak to your partner at certain times about certain things then maybe find someone else.

Yeah I mean I think that’s the… single most important thing that happened in the course of that process is moving into something with a degree of skepticism.

And within a fairly short period of time coming out with a much more balanced and much more positive view of something, which was sitting down with a complete stranger to talk about something that was very private.

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