I filled in a contact on the email and they sent me and she phoned me and I think, if I remember rightly, it was within a couple of days she was here to have a chat and see what she could do to help. She also put me in contact with the local stroke club. Unfortunately, as far as that’s concerned, I haven’t been able to bring myself to go yet.

it’s, a number of reasons but the main reason is, and it’s rather silly and I laugh at myself when I think about it, but I was frightened of seeing other people there who had had a stroke and were much worse off than I am, or been left much worse off than I am, and then it plays on my mind, Well, is this going to happen again? And am I going to end up like that I do now truly want to go. I would have gone this month, it’s once a month the club, but unfortunately it, it didn’t work out for transport reasons. But I do really intend to try and go next month [chuckles] and I hope that it will help us both because my wife also needs some help because obviously she was there when it happened, it must have been catastrophic for her. And she had no information nobody, well as far as I know anyway, gave her any information. And if we were to get to that club they openly invite partners to go, partners or whatever, you know, carers. And obviously she’s going to hopefully talk to other carers or other people who’ve had strokes and be able to discuss things and, you know, sort of say, Oh yeah, well that’s a good idea, we can, we did that and we can do that Or, you know, This is what we do

I don’t find it very easy because I, if I’m talking to, well basically a stranger, well not necessarily a stranger, I tend to begin emotional. I’m amazed this afternoon that I’ve got through this without breaking down to be quite honest.

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 what I’m here for. I’m your wife. I’m here to care for you and if the same thing happenedyou would do the same And of course I would.

I do worry. I worry much more than I used to. I worry more than is good for me, but I don’t know how to stop that.

I, they did give me some antidepressants but they sent me into such a spin and such a horrible situation that I only took one [laughs]. I took, I took the one and that was enough.

What they just made you feel funny?

It made me, well, it was like I mean, like I imagined you would feel if you take an overdose of cannabis or something. Things were, I mean I say imagine..literally. things were going in and out. I felt worse. And I, that was it.

Right.

I mean, I was told by the doctor, by the nurse, by the pharmacist, to be, not to be worried because they wouldn’t work for at least seven, maybe twelve, maybe fourteen days.

I took one and within an hour I was in a terrible state.

So you just, you didn’t bother with those after that?

I didn’t bother with any more.

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.

Well, I think anyone at risk should get as much help medically as they can. And if they are doing things like I mentioned before – smoking, overeating, greasy foods, drinking lots of beer, although all those are quite pleasant at the time, believe me having a stroke isn’t. And to anyone who’s had a stroke, there is light at the end of the tunnel. At times when you first, when you’re at the beginning of the tunnel, you can’t see the light. I think, you know it, you, you begin to wonder if there is light at the end of the tunnel, but yes there is. Things coming back to normal. I found myself laughing out loud yesterday about a letter in the paper and I haven’t laughed out loud like that for quite a long time. In fact Shirley came in from the kitchen to see what was going on [laughs]. And when I read it we both had a darn good laugh. But it does get better. And I think as long as you can try and take care of yourself, hopefully you can live to a ripe old age.

Did the fact that you weren’t able to drive for a while did that cause any, any issues or problems for you?

It caused issues as far as going into town and shopping and that because we do have quite a reasonable service, bus service out here. But as you can see where we are it’s, you know, without a car, it’s not that easy for certain things like big items of shopping, potatoes, milk and things like that. Or taking rubbish to the skip which we do quite, well used to do quite a bit of. Yeah, that is where the car comes in so useful.

So then after the month you resumed, you felt OK and resumed driving?

Yes I have driven since.

And then
Although I don’t drive anywhere near as much as I used to now.

And is that related to what happened or is that just because you slowed down a bit or?

I’ve slowed down a bit and I don’t feel so confident anymore. Yeah, I just don’t feel
That’s fine. Yeah.

..so confident anymore.

Yeah.

This is one of the biggest things that this stroke has done.

They told me that I was, I couldn’t mean they didn’t inform DVLA or anything but they told me not to drive for a month, which I didn’t do.

And so it was just left to you
It was just left to me to police that. Yeah.

Right. And what do, what do you think about that whole idea about leaving people to just make their own decision about that? I mean, did you feel able to kind of decide when you were ready to go back to driving or?

Oh yes. I think I would prefer it that way, unless they thought that there was a chance of me, you know, of ignoring it because I’m quite a strong character when I want to be. And anyway I had the backup again of my wife, who is my carer and if I’d had decided before the month was up that I wanted to drive, she would have either of hidden or thrown the keys miles or something so I wouldn’t be able to drive anyway.

Right.

And they, they knew that. They could see that Shirley was quite cap, was quite capable of you know, policing that as it were.

Anyway the next thing that I know is rather noisy paramedic enters the sitting room, and at a volume that seemed 20 times too much asked me what was the matter and I told her. Well I told her, [wife] told her what was the matter. And I tried to tell her what was the matter. And she came to me and said, don’t worry, we’ll look after yo, and put an oxygen mask on. Now I have a strange phobia about things over my face because as a child, I was blowing up a balloon and the balloon burst and went onto my face and I couldn’t get it off. So I was sent, ever since then I don’t particularly like balloons that much, nor do I like anything put on my face. But she insisted, rightly so it transpires to put this oxygen mask on my face. And I kept asking her or at least I thought I was asking her to take it off, but of course it was absolute gibberish. She carried on doing various things I suppose, taking my blood pressure and pulse and everything else. And then she put an ECG machine on and started that off. And I suddenly managed to say, Pleas’, because that is one of my favourite words and, Please could you take this off my face I couldn’t get the could you take it off for anything else out but I got the please out. And I quite distinctly remember her turning to [wife] and said, Oh it’s all right he’s coming back And I tried to say, Oh yeah, you know, it takes more than that to keep me awa. But I just couldn’t again.

Two more ambulance men arrive. And they carry on doing their various things. And then, as far as I remember, I start to talk reasonably well. It was very difficult to find the words. It was a bit like having a drawer with all the words you use in alphabetical order or, or in some sort of order that you, you know where they are and you can just use them but some clot had been into this drawer and used all the, my words and put them back in the wrong place. And also when I was looking out to the window it was almost like looking out through dear me, how can I explain it? A window with patterning on. We did have a longer net curtain than is there now but it wasn’t that, it was like a pattern on it. They then loaded me into the ambulance took me to hospital where I was still not really able to, to say that much but I did manage to begin to tell people what I felt and what I wanted but I was still finding that some of these words were still squeezing out from under my fingers. It was like trying to hold a goldfish and it just squeeze away. And I’m not sure how long that lasted for but it lasted to mind my mind for a considerable time.

I think from the time, I’m going back now but going back from the time that she put my, put the mask on my face so I couldn’t say anything to actually being able to produce one or two words was probably 10 minutes or thereabouts. I don’t really know.

As I say we’ve had the physiotherapist here who’s given me some, because I’d partially lost my balance, when I had the TIA. And I still use two elbow crutches now. So they provided those and she trained me how to use them. They put me a bar up in the bed so that I can heave myself out. I fall in [laughs]. But I can I heave myself out and hold on to it to help myself dress as much as I can because I’m a stubborn so and so. I like to try and do things as, as best I can myself. They provided me with an effort to put socks and pants on, and things, which is extremely useful.

They told me with my, my temperament being so well, no patience whatsoever, I’d never get on with it. But I got on with it like a house on fire from day one.

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’mrdquo; 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.

So did you get in contact with the local stroke co-ordinator? Was that how you found them?

I, they, well they, I sent to the headquarter, I filled in a contact on the email and they sent me and she phoned me and I think, if I remember rightly, it was within a couple of days she was here to have a chat and see what she could do to help. She also put me in, in contact with the local stroke club. Unfortunately, as far as that’s concerned, I haven’t been able to bring myself to go yet.

it’s, a number of reasons but the main reason is, and it’s rather silly and I laugh at myself when I think about it, but I was frightened of seeing other people there who had had a stroke and were much worse off than I am, or been left much worse off than I am, and then it plays on my mind, Well, is this going to happen again? And am I going to end up like that I do now truly want to go. I would have gone this month, it’s once a month the club, but unfortunately it, it didn’t work out for transport reasons. But I do really intend to try and go next month [chuckles] and I hope that it will help us both because my wife also needs some help because obviously she was there when it happened, it must have been catastrophic for her. And she had no information nobody, well as far as I know anyway, gave her any information. And if we were to get to that club they openly invite partners to go, partners or whatever, you know, carers. And obviously she’s going to hopefully talk to other carers or other people who’ve had strokes and be able to discuss things and, you know, sort of say, Oh yeah, well that’s a good idea, we can, we did that and we can do that Or, you know, This is what we do

Unfortunately the one coordinator is leaving which is sad, but somebody else is taking her place. But, yes, you feel there’s somebody there. We have numbers we can ring. I even have got the voluntary coordinator’s mobile number so we can get in touch. And in fact she’s coming on Friday. We can get in touch fairly quickly. And if all else fails there’s the website to get straight through to the Stroke Association.

What was the advice? Did you give, get given medication? What happened?

They gave me some, they gave me different… blood pressure tablets, but that was about all really. And I think I didn’t, didn’t get any medical advice as such.

Were you told to take aspirin?

Oh yes, yes of course I was, sorry yes. I got a higher dose of aspirin for the first fourteen days and then I’d gone down onto a higher than normal but slightly lower dose than that now. Yes.

And do you understand what the reason for that is?

Well it keeps the blood thin doesn’t it? Yeah.

And so, I mean I know that you said that you hadn’t really given a kind of proper explanation of the TIA, so would you be able to understand why you need your blood thinned to avoid any further problems or is that something you haven’t really had explained to you?

I haven’t really I don’t think.

Right.

Although from my own knowledge of first aid and that obviously if it’s thinner, it’s easier for the heart to get it through and it stops the heart working so hard and hopefully it won’t get across again.

And so were you also told about you know the likelihood or possibility of, of anything further happening or were you just left to your own devices on that score?

Well apart from the fact of being told that I couldn’t drive for a month. I was virtually left on my own. I wasn’t told, I mean well I read in a leaflet actually that it is possible to have one although it’s you know obviously far from definite or anything else. In fact it’s probably more unlikely now because I’ve been on medication hopefully that will stop any symptoms happening.

At what point did they mention that it was a TIA? When did you get told what it was?

I think it was the following day. Somebody did come in and, one of the nurse practitioners came in that day into A and E and said that they thought I’d had a mini-stroke.

OK.

Which I found to be extremely frightening. The next day a doctor came. Nice, approachable young fellow and I asked him exactly what had gone on and he said, Oh, you’ve had a, a TIA And I said, Well, what in hell is a TIA And he said, Well, it’s a mini-stroke He said, But we are going to call it an actual stroke because it has left you with certain things. You’re still, you know, if it was a, if it had been just a TIA it would have just of gone straight through and you would have had nothing left of it now. But because you’re still having slight difficulty with some of the words and, you know, emotions, we are going to call it a mini-stroke

And how, how long after the event was that, that you had that conversation with the doctor? Was it the next day? Did you say?

Yes it was the next day. It, it was probably about 12 hours after it happened. No, sorry, 24 hours after it happened.

So what he was talking about the duration of your symptoms and
Yes.

.. relating that to
Yes.

…the diagnosis that he gave?

Yes, well I still, I was talking then, I was talking OK but I, on occasions I lost the words this time, I just couldn’t, I knew exactly what I wanted to say and I knew where the word was but I just couldn’t put it in line.

Did you get any bet, any further explanation of what a TIA or mini-stroke actually is or do you know that now? Or

Not really. I think the nurses did sort of say did give some information but even to this day, I mean, I know what 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

I think the nurses did sort of say did give some information but even to this day, I mean, I know, 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 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.

So, I mean, one of the questions I have here is, you know, were you happy with the way you were told? I mean, it doesn’t sound to me
No, not really. I like, when something’s the matter with me I want every nut and bold explained. I want to be told what, why, when, how and I, it wasn’t. It wasn’t until I actually went on the computer some days later and looked for strokes and found the Stroke Club, website and sent off a message that literally said, Please help me. I don’t know what to do. I’ve had a TIA, I think Can you help me And they were brilliant. Once I had made contact with them I thought that everything was great. They sent a volunteer out who came and spoke to me.

You talked about the support group, you know, the Stroke Association and the help that you had through them, have you used any other health information websites at all or found anything useful or not useful either way really?

No, I haven’t really. I tend to find rightly or wrongly perhaps I’ve just come across the wrong ones, I don’t know. But I tend to find these websites either have so much information that you’re left even more confused than, than when you started off or you get so much information and then you, you’ve either got to join their club or something and that involves cash. I did find one like that. You’ve got to pay to join go any further which was

So, no I really haven’t. I’ve just I mean I’ve got some very useful information, some booklets through the Stroke Association, the care, the coordinator has come out and chatted and given me all the information I need. So we’ve done it that way.

I worry much more than I used to. I worry more than is good for me, but I don’t know how to stop that.

I, they did give me some antidepressants but they sent me into such a spin and enough.

What they just made you feel funny?

It made me, well, it was like I mean, like I imagined you would feel if you take an overdose of cannabis or something. Things were, I mean I say imagineiterally. things were going in and out. I felt worse. And I, that was it.

Right.

I mean, I was told by the doctor, by the nurse, by the pharmacist, to be, not to be worried because they wouldn’t work for at least seven, maybe twelve, maybe fourteen days.

I took one and within an hour I was in a terrible state.

So you just, you didn’t bother with those after that?

I didn’t bother with any more.

think the nurses did sort of say did give some information but even to this day, I mean, I know, 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 [wife] and I sat here and we just didn’t know what to do. We were completely lost and alone. Absolutely on our own.

So, I mean, one of the questions I have here is, you know, were you happy with the way you were told? I mean, it doesn’t sound to me

No, not really. I like, when, when something’s the matter with me I want every nut and bold explained. I want to be told what, why, when, how and I, it wasn’t. It wasn’t until I actually went on the computer some days later and looked for strokes and found the Stroke Club, website and sent off a message that literally said, Please help me. I don’t know what to do. I’ve had a TIA, I think Can you help me And they were brilliant. Once I had made contact with them I thought that everything was great. They sent a volunteer out who came and spoke to me.

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.

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.

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.

Well it, it all began one April morning on well it was a Monday and we’d just completed the very upsetting job of burying our old dog. He’d been with us for 14 years so of course both Shirley and I were extremely upset. We came in to have a cup of coffee. I sat down in my chair. And I think Shirley asked me a question and I tried to answer the question. But discovered that the words that I wanted were floating around, well to my mind they were floating around in a very large bubble. And when I tried to catch the words, they squeezed out from between my fingers. And it’s so real, it’s unbelievable how it’s coming back. But the words I just couldn’t hold them. I just couldn’t. And I couldn’t make any sense of anything. And I just didn’t know what was going on. I think I asked Shirley for help although I don’t really know I can’t really remember that. But I think I asked Shirley for help. And she came and knelt by the side of my chair and asked me what was the matter. And I tried to tell her but I couldn’t. I couldn’t say a word. And I was desperately frightened.

And then, as far as I remember, I start to talk reasonably well. It was very difficult to find the words. It was a bit like having a, a drawer with all the words you use in alphabetical order or, or in some sort of order that you, you know where they are and you can just use them but some clot had been into this drawer and used all the, my words and put them back in the wrong place.