On the tip of my tongue : Series 1 Episode 4 - Carers with Ann Hirons

Caring for Loved Ones with Aphasia: A Personal Journey with Ann

In this episode of the 'On the Tip of My Tongue' podcast, we welcome Ann, Jon's wife, to discuss her experience caring for a partner with aphasia following his stroke. Ann shares her professional background in psychology and addiction therapy within the NHS, which provided her some tools in managing Jon's condition. The conversation covers the initial challenges, the importance of early intervention and therapy, and the support systems and strategies Ann employed to assist John's recovery. Ann emphasizes the value of support groups and staying positive, while highlighting her journey from managing overwhelming emotions to achieving significant milestones in Jon's rehabilitative process.

Transcript

Interview - Episode 4 Ann Hirons 
 

Rob Edwards: [00:00:00] Welcome, Ann, to the On the Tip of My Tongue podcast. It's great to have you here. And today we're talking about caring for people with aphasia. Now you, of course, I've known you a very long time. You are John's wife. 

Jon being my co host and the driving force behind the podcast. And of course he had a stroke a few years ago and suffers with aphasia. 

But before we get into all that I thought it might be a good idea just to start with your professional background. For many years you worked for the NHS and I think this has a bearing on things. Perhaps you could just tell us what you did. 

Ann Hirons: By the way, thank you for doing this, this podcast. It's, it's really helpful. 

Right. A bit about my background. Yes, I did work for the NHS for just over 20 years, I think. I was a therapist and I worked in mental [00:01:00] health. My background is in psychology, but my work was really mainly around people with addictions. 

I practiced within a clinic that ran, looked after people with addictions and, and their prescribing their medication things like that. And then I, for, for about 11 years, I, I was the manager of the, the clinic as part of the mental health team and prescribing in the community. 

So whilst I know a lot about addictions, I don't really know anything or I didn't know anything about aphasia and I've had to learn pretty fast after John had his stroke  

Rob Edwards: what I was going to say, the reason I sort of asked you to talk about that was I wondered if you thought that might have helped you in any way, giving you, as I'm imagining there's a lot of [00:02:00] people in your position who are. Yeah. find themselves one day looking after their partner has a stroke, they have aphasia or whatever, and they have to deal with it. 

But it's a very, it could be a very overwhelming experience, obviously. And I just wondered whether your background, being a sort of therapist yourself, dealing with people with a lot of different problems, addiction problems, alcoholics, but you would have experience and confidence that There are therapies, you can do them, and they work or they can work. 

So I wondered if that might have given you, you know, a more positive mindset and a bit of a sort of head start in, in your journey of dealing with John's Problems with aphasia. 

 Well, obviously it, it did because of my background in psychology. Thank goodness, I at least knew where to look and how to get the information [00:03:00] that I needed. We did do a certain amount of learning about the brain and neuropsychology, but obviously that wasn't my specialism. So I'm I knew where to look. I knew the books that I had to, to look at and where on the internet to, to look for it. Also, the information that I got from the hospital that it was aphasia. That there was a bleed on the brain within the, the language area of the brain specifically Broca's area. 

Ann Hirons: So I was able to, to kind of go from there. The hospital were also very helpful in explaining what needed to be done and and of course doing their, their tests to, to identify the problem more accurately for John. But you asked about my, how it felt and the [00:04:00] overwhelming experience and it was overwhelming at the time. 

I think because it happened quite far away from home. As you know, we live in Devon and this happened in London. So, it was a long journey to actually make to the hospital. Unfortunately, we have friends in London. So, I was able to stay with them and they were a great support. So, in that sense it was overwhelming because I had to work out how to bring John home and how to kind of look after him because he was a bit all over the place. 

There were things he could remember and things that he couldn't. He couldn't remember how to really work his phone.  

Rob Edwards: I just ask, how did you hear, 

Ann Hirons: how did I hear about 

Rob Edwards: yeah, just to take us back to the kind of moment, so he's gone to [00:05:00] London 

meeting, and we know this, and, and he, Has this stroke. 

It feels pretty 

you get a phone call. Does he phone you? Does he know how to phone you at this 

Ann Hirons: He did. He phoned me in between meetings. I knew it was going to be a stressful day for him and I knew he had three meetings planned for that day and one of them was away from the hub, which is where he was working. So which was a lunchtime meeting he phoned me on his way back to the office and he said he felt really strange, very, very odd. And he said something that was very peculiar. He said, I can't find my worms. Which was really, he was trying to find, find the word words. He was trying to tell me he couldn't find his words.  

Rob Edwards: What did that did? But did that ring immediate alarm bells? 

Ann Hirons: Well, it did. I was, I was a bit worried about it and I thought maybe he [00:06:00] was having a TIA or something, you know, and Well, it is something to do with a mild stroke. 

Often people have things like that. And they don't really know that they've had them. So I thought that's what he might have been having, I sent him to get back to the office. And I phoned our friends in case he needed a bed for the night and I could come up the following day. But he got back to the office and he was even worse. He couldn't read what they were asking him to, to read. 

So they phoned an ambulance quite rightly. The ambulance came and they checked him over, decided he needed to go to hospital. So he was taken to UCLH. where they, they did all the scans that they were supposed to and and came up with the, this bleed, which they could [00:07:00] see on the CT scan that they, they did. 

And they, they diagnosed it from there. So from there on, I had to work out how to get John home. He spent five days in, in hospital. And our friends very kindly drove us back.  

Rob Edwards: So you rushed obviously to London to see him in hospital. Tell us a little bit about maybe what did you, what condition did you find him in? Could you have a conversation with him? 

His worms a bit better or was he still wormless? 

Ann Hirons: he was still with us. It was, it was very strange. He could recall certain things. He could tell me that he needed to phone the football team because he couldn't go. Play football. And he, he tried to, to tell me to, to text you, but that wasn't very [00:08:00] clear at all, actually. And then I realized that that's what he was trying to, to say. 

So, and then I phoned you and Marketa. So, yes, that, that was very strange. Gradually, he was able to get some of that back, but not always while he was in, in hospital. He could remember his postcode, but he couldn't remember the, the name of the road or, or anything else. He couldn't remember his phone number, his bank account numbers, his PIN numbers and things like that. 

Important things he couldn't remember. 

Rob Edwards: pretty damn important things. 

Ann Hirons: Very important things. So we had the whole job of getting that sorted out when he came home. 

Rob Edwards: So you got home and I do remember you telling me your son went, Christopher went to see him  

Ann Hirons: He knew who Christopher was. Christopher was able to get there quite quickly [00:09:00] because he, he lives in North London. And John was a bit cross. He couldn't understand why Christopher was there. And I think it was because he didn't realise how poorly he was. You know, suddenly Christopher turns up to, to see him and, and he's saying, Why are you here? 

 That was quite weird for Christopher. But then he, he was soon okay after that, you know, so yeah, and then Christopher went to see him every day. Taking fruit along that John didn't really want  

Rob Edwards: you get him home, you get him home 

to Devon 

Ann Hirons: it takes a little while before we can get speech therapy and so on organized because the speech therapist was on holiday and as with everything there's always a waiting list for for these things. 

So I, I knew that it was important to, to get him reading and and writing as soon as possible because [00:10:00] the, the, there is a a curve where People make good progress within three months, but after three months it plateaus and although it still increases people have to keep working at it in order for it to, to kind of improve. 

So I was aware that we had a lot of work to do to kind of him recognizing words and so on. 

Rob Edwards: The fact that you realized this, was this something you found through your own research that this you should get on with it and really crack on with some therapy, not wait for the professionals as it were to come in or from your research, or did the hospital tell you, or did people say this is what you've got to do? 

How much guidance did you get from the hospital? 

Ann Hirons: well, there was a bit of guidance from the hospital, but not an awful lot. It was mainly that they, they would send the information down to Devon and someone would, would get in touch [00:11:00] with us. But from my own research, I was able to, to find people on the internet who, who talked a great length about this. 

And a couple of them were one was Neuropsychologist and the other one was a Neurologist. And so they, and both of them had experience of aphasia and had managed to recover quite significantly to 

Rob Edwards: So they had experience of it, being sufferers themselves, not dealing with patients. 

 The neurologist was actually able to, to write a book about it and her experience was very, very bad unlike John's, which was quite mild. 

Ann Hirons: She had to learn to walk again, et cetera. The neuropsychologist had also recovered significantly. So he was lecturing. on the topic and attending conferences and so on. So it was very helpful and very encouraging for [00:12:00] me to, to see that. So I then realized that I'm I needed to get John recognizing words and reading. 

So I did buy some children's flashcards for him to read and, and become, So we went through the whole process of recognizing animals and birds and, and names and letters and writing on the, the little dotted lines that they have at the bottom, you know, for elephant and giraffe and so on. And amazingly, John progressed quite well with all of that. 

So I then encouraged him to, to read as well, which he found very difficult because he was still getting headaches quite a lot. And so we, we would read maybe about four or five lines of a Laurie Lee book, 

Rob Edwards: Cider with Rosie,  

Ann Hirons: Yeah, which is a bit tough for him to, to [00:13:00] start reading it when he was feeling so unwell. 

But anyway, yes, I was cracking the whip.  

Rob Edwards: You, were you, were you, did you have a kind of routine? Did you say, 

Ann Hirons: yes, we did. 

Rob Edwards: class time now. Sit down at the desk. 

Ann Hirons: not quite, but we, we did used to, to do it after breakfast  

Rob Edwards: you couldn't do too much. Is that right? You had to sort of judge it. 

Ann Hirons: It was about 15 minutes or so. And John used to get very tired. I used to get very worried. 

Rob Edwards: Hmm. 
 

Ann Hirons: because, you know, you don't know if it's going to happen again. He was mobile. I think worrying about him going out on his own was was quite worrying for both of us. because I wasn't sure he would be able to find his way back. So even just walking around the very small streets that we, we have in Seaton was worrying for him the first time he went out without me. 

And [00:14:00] so I went to the gym, he went for a walk, And I showed him how to text me to show me that he was back which he did within half an hour, which was the agreed time, which was quite, quite good actually and encouraging. And I'd written out on a piece of paper, his name and address and telephone, my telephone number in case he got lost or somebody, someone could phone me or take him home, you know, that kind of thing. 

And he was okay. And then the next step was going to, to Exeter and allowing him to, to walk around for, for about an hour. And then we agreed to meet up somewhere. So, you know, things were improving in that way. 

Rob Edwards: So you're sitting anxiously in a cafe or something or in your car 

Ann Hirons: No, no, no. 

Rob Edwards: he's wandering the streets of Exeter 

Ann Hirons: we 
 

Rob Edwards: Well, he knows, 

Ann Hirons: No, no. No, actually, no, 

Rob Edwards: [00:15:00] could he remember it? 

Ann Hirons: Oh yes, he did, he did. We, we both went to different places as, as we tend to do. We split up in Exeter and then meet up for lunch or something, which is really the same thing that we, we did. So they were all familiar places that he would have known where to meet up. 

So and I knew where he was going. So if he didn't turn up, I would. gone there and found him. . Driving was another problem. Well, no, not a problem, actually, because I don't mind driving. So I did all of the driving which was okay. But for John, it seemed that a skill that he and a bit of freedom was taken away from him. 

It was about six months before he could get his license back and there were various eye tests and so on that he had to attend before he got them back. 

Rob Edwards: Was that a thing [00:16:00] where they said, Oh, you've had aphasia, you can't drive, or what? How did that work? Did they take, did the, you have to fill in a form, don't you, about your health when you get to my age and his age? 

Ann Hirons: yeah, exactly, exactly. I think that, that was one of the, the issues that that was the problem because he was also 70. He had a, an extra form to, to fill in, fill in. And of course he had to say that he'd had a stroke and they asked him to have various tests and eye tests and so on to to make sure that he was all right. 

 I think at first he'd lost some vision on one side of his head. So he had he couldn't understand when I said to him that you have a blind spot. And that's what they're trying to find out is whether you recognise that there's [00:17:00] a blind spot. And he said he'd never heard of that before. But of course now he realises that he didn't, he knew what it was, he just couldn't identify it. so getting his licence back was, was another really good thing for him. Yes, it was a milestone. I think one of the others, which was fairly soon after, about three months or four months after he had his stroke, we were invited to a friend's birthday party in Bath and well, I drove there, but we stayed overnight in a hotel and it was the first time he'd seen all of our friends. 

And so, and the first time that they really got to speak to him and to, to see how he is and so on. So I think it was really helpful for him to be able to, to talk to people. other than me or people at the [00:18:00] hospital or anything like that. He was actually talking to our friends and and explaining what had happened to him. 

He got through that really well actually. He, he, and I think that also boosted his confidence greatly because he was able to, to do that. So from there on, we, we kind of made a lot of progress. He made a lot of progress and And we both kind of calmed down a little bit because, you know, it's, John was aware of what was happening to him he wasn't unaware of it a worrying experience for both of us 

Rob Edwards: When did the calming down? Can you put a time on it? Like months after or something? 

Ann Hirons: It's difficult to say actually. I think when, when John was able to, to start doing things on his own I began to feel a lot easier. But then he'd make a trip to [00:19:00] London on the train on his own. And those were the sorts of things that made me. anxious because I'm, I, I worry about him I don't know, the stress of wandering around London, although previously that wasn't stressful, but you know, just doing stuff like that made me a bit worried, but I've kind of got over that really. 

He does still text me wherever he is, you know, when he, when he comes down to see you. He always sends me a text to say where he is, you know, arriving at Waterloo or trains delayed or, or, you know, just got off the station to, to see you and so on.  

Rob Edwards: Do, do you still worry? Are you 

Ann Hirons: yeah, 
 

Rob Edwards: still worrying about him? 

Ann Hirons: I do, I do sometimes actually. 

When, when he's away from home, I do. And I know it sounds silly, but even when he goes to play football now, I [00:20:00] kind of I don't worry as much, but I do like to make sure that he's sent me a text to say he's arrived, you know. En route, he says, or something 

Rob Edwards: Well, it's not silly to worry, is it? I mean, you know, it's understandable do you think it's changed your. relationship at all brought you together even more, that kind of thing in a way.  

Ann Hirons: We both had our health problems and and being carers for each other one time or another. So, you know, it was it was good that I could reciprocate, I suppose. you look at it in that way. I still help John out. You know, he quite often can't remember a word for something. I think he was thinking of something this morning and he couldn't, couldn't remember what word was, you know. So I help him out quite a lot in that way. 

Also, his spelling now is just really bad, so I have to help him out with that. So it says, well, I [00:21:00] have a good education. 

Rob Edwards: Yes, indeed. What would you say if someone found themselves in the same situation as yourself, their partner suddenly has a stroke of course the stroke could have many consequences, it could be physical, it could be aphasia, it can be a multitude of things, could be a combination of things, but are there any words of advice or help you might think of to tell somebody who suddenly finds themselves in that position? 

Ann Hirons: Well, I, I think it's really important to, to make contact with the, with support groups. I haven't mentioned the support group that 

in Exeter , he doesn't go to meetings or anything, he has made a number of films for them and gone along to, to chat to them and so on, which is really encouraging. Because John Stroke wasn't as as bad as some of the, the others. I think whatever it is, if you don't know much about it, it's really [00:22:00] important to get in touch with a support group because they can really, really help you. 

And they can give you this information that you, you don't know or can't find on the internet. And it just helps to know that there are other people in this situation as well. You're not the only one. Because it's easy to become quite isolated and to feel, I can't go out or this is a really scary situation. 

And it is a scary situation, but it's something that you can cope with. You know, life is like that. You, you just have to, to learn to cope with the situations that get thrown at you.  

I think that's the, the most important thing is to, to let people know and to talk about it and listen to the advice that you get from the professionals because [00:23:00] they, they, they do know what they're talking about 

Rob Edwards: I mean, I'm trying to put myself, sometimes I think of putting myself in John's position. I know he is a very, and I know you are, very positive people. You have a kind of, and John certainly is a positive person. Doesn't dwell on the dark side of things. I think, would that be a fair thing to say? 

Ann Hirons: I think it is important to to try and keep an open mind and to be positive about things. I know at the time you feel you're in a dark place and that you just want to shut the world out and, and get over this problem, it's easy to say from this distance. It's also easy for me to say this, but Maybe some people don't have the same group of friends or help or family that they can turn to and we're really lucky, we're really fortunate in that way. 

But you know, we, we have a good circle of friends. We have a good family that we [00:24:00] can kind of talk to and so on. But it is important to, to try and let it all out and talk to, to people, tell them how you're feeling and, and if it means talking to your family or getting support from your family or the professional groups that, that are around, go for it, just do it. 

Take whatever's out there really and and go with it 

 Good advice. When did the actual professional help kick in? Because you did get some professional therapy, didn't, 

Ann Hirons: John had speech therapy. That happened, I think it must have been about a month or maybe six weeks later. But he started to go to see the speech therapist, by which time we had done quite, made quite a lot of progress at home. So when he went to see the, the, the therapist, he, and she gave him sheets of paper with lots of words on it to, he, he [00:25:00] was able to recognize all the words and to read them back to her. 

Rob Edwards: Ah, Cider with Rosie worked, and the flesh cut. That's wonderful. 

Ann Hirons: they did. Yeah. I mean, one of the helpful things she, she did for him was put him onto a website that actually gave out that actually you kind of click on  

Marker 
 

Ann Hirons: various names they would say the name of something and he'd have to identify it on the screen. 

And that, that was really a helpful tool for him. And he soon progressed to, to the next level and the next level and so on and and, and that worked quite well. But, after a while she, she said, I don't need to see you anymore. You can come back in three months and we'll have a, we'll, we'll just check on you. 

So I think after about three months or, or 10 sessions or something, because I think they're only allowed to have so [00:26:00] many sessions per. Client or patient, and then you move them on. So fortunately, John was okay. And then he was soon discharged by the by the hospital as well. 

Rob Edwards: Thank you so much, Anne, for joining us on the podcast, and it's, it's quite inspiring, I think, listening to you, 

Ann Hirons: you're very welcome. I'll do anything to, to help, actually. It's 

Rob Edwards: wow, it's brilliant. 

And we should just say, shouldn't we, I suppose, John, I mean, thanks to you and obviously himself and obviously the nature of his condition that wasn't too serious. 

He's gone on, you know, 

Ann Hirons: He makes films here. 

Rob Edwards: this podcast, 

Ann Hirons: He does, yes. I mean, he gets all of this together. 

Rob Edwards: wrote a script to play that we recorded. 

Ann Hirons: did. Yes, yes, 

Rob Edwards: a car, 
 

Ann Hirons: He did. 
 

Rob Edwards: goes shopping to Tesco's and doesn't get lost 

Ann Hirons: Oh my goodness, yes.  

Rob Edwards: Things have really moved on. 

Ann Hirons: Yes, yeah, he does all of those things [00:27:00] actually. So yeah. Can't complain about that. Touch wood. Touch wood. And thank goodness. 

Rob Edwards: Do you ever worry, just one last thing, do you ever, does he worry, do you worry, you know, a stroke can happen to anybody any time, about a repeat, is that a cloud hanging over anyway, just forget about it, you know, it could happen, it could, 

Ann Hirons: Yes and no. I mean, John does keep a check on his blood pressure because that's one of the main things that he's supposed to. The GP keeps a good eye on him, really for all sorts of reasons.  

Rob Edwards: Well, thank you again, Anne, for 

Ann Hirons: Oh, you're very welcome. You're very welcome. And thank you for doing it. 

Rob Edwards: oh no, it's my pleasure. It's my pleasure.