Stella and Deborah - Interview 20

Age at interview: 82

Age at diagnosis: 81

Brief Outline: Stella had a stroke in 2009 and her left side was paralysed. She spent several months in hospital and now lives in a nursing home. Since the stroke she has had several TIAs, which often leave her feeling tired, but she does not remember much about them.

Background: Stella is a retired teacher, and she is widowed. Her daughter Deborah is a self-employed book-keeper. Ethnic background/nationality' White English.

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Stella had a stroke in late 2009. She was found by her neighbours who called an ambulance. She was in intensive care for a while, and then moved into the acute stroke ward for a month, followed by time on a general ward, where her daughter Deborah feels the rehabilitation and care was not so intensive. Deborah herself spent the first two months with her mother in hospital on a daily basis, making sure her needs were responded to quickly. She feels one-to-one care is very important in helping someone recover. Unfortunately she had to return to work. When Stella moved to the general ward, she felt as if it was a signal there was no hope of recovering, and that staff felt there was little point in offering lots of physio, for example. Stella was moved to a community hospital, and the family were not happy that she was getting enough attention there. Stella feels more constructive care was needed. The family were particularly angry one day to find Stella – who always prefers to wear trousers - in an ill-fitting dress that she would never have chosen, because staff found it easier to take people to the toilet if they were wearing a skirt.

So Stella went to a nursing home where she and the family feel the quality of care is excellent. Deborah lives abroad and comes over every two months to spend time with her mother, and Stella’s friends still visit a lot. The only problem with care is having to wait sometimes for people to come when you press the call button. Despite the good care, nothing can make up for the losses that Stella has experienced because of the stroke. She can no longer garden, or dance, or ice skate, and she cannot read or play the piano any more. The staff are very kind, but having to be washed is difficult to accept, and things like getting her teeth brushed may get forgotten. Stella was always a very active and fit person who lived a full life with lots of socialising and a well-planned timetable. Now she has lost that control and choice.

Since the stroke, Stella has also had several TIAs. They last only a very few minutes, and she cannot really remember having them, but sometimes they do leave her feeling very tired and confused, especially the slightly longer ones. Deborah has seen her having a TIA while sitting in the garden – she noticed that her mother’s facial expression had become fixed. The nursing and care staff say sometimes she is just staring fixedly at them, and on one occasion when Deborah telephoned she could hear her mother ‘babbling’. The medical staff have changed her medication to try to avoid getting any more TIAs, though in fact Stella had one the day before she was interviewed, while she was having her hair done. Because Stella is not really aware that she is having one, she may well have had more TIAs while she is on her own that no-one notices.
 

Other people notice that Stella goes blank sometimes but she is unaware of what's happening for a few minutes.

 

Deborah' Now in May, we were sitting outside talking to Mum, and Mum had sunglasses on and while we were talking, I realised Mum’s facial expressions hadn’t changed. I asked her if she was alright, and I took her sunglasses off and she was just [makes a blank face to illustrate]. When I asked her if she was alright - nothing. Mum couldn’t say anything and her expression didn’t change. So we got Mum back here and the medical staff came. And Mum came out of it. So again that was probably a minute or even two minutes at the most. And Mum just felt tired, but there wasn’t any confusion then, because it seems to me the short TIAs you can get through, but if they go on longer than five minutes, then—

 

Stella' They sap your energy.

 

Deborah'Yes, and the confusion might just be because Mum’s tired and whacked out from it.

 

Stella' Yes I’m staring, I know I’m staring into space.

 

Oh right, so you, that you’re aware that you’re not aware, as it were? That sounds odd. But you’re aware that you’re just staring and...

 

Stella' Yes, because some of the carers say to me when I’m lying down and I’m looking up at them, and I’m looking at them, sometimes they say to me, “Why are you looking at me like that?” you see. So I’m staring at them. So I think it unnerves them.

 

Stella had a stroke a while ago which affected her left side

 

Let’s kick off with when you first realised something was wrong?

 

Stella' I didn’t know, because usually I’m very all together and know what I’m wearing and things like that.

 

Deborah' But you’d got out of bed, hadn’t you, to go to the bathroom?

 

Stella' I must have done, to walk to the bathroom.

 

Deborah' And then that’s when it [happened].

 

Stella' That alerted my neighbours.

 

Deborah' And then…

 

Stella' And apparently I fought them, didn’t I?

 

Deborah' I don’t know. I wasn’t there, was I?

 

Stella' They said it was very difficult to get me dressed.

 

Deborah' Mum was found on the landing, unable to move, because her left side had been paralysed. Luckily the neighbours had a spare key and managed to get into the house, and they called the paramedics. They realised that you had had a stroke.

 

Stella' And when I came to I didn’t know I was in hospital.

 

Deborah' So they took Mum - the paramedics arrived, the neighbours got you dressed.

 

Stella' Did they?

 

Deborah' Yes.

 

Stella' Yes that’s right.

 

Deborah' And then they took Mum to the hospital.

 

Stella' And then they called my son who lives in [city], and he got going very quickly and got down to the [hospital] quickly, and beat the [hospital], the ambulance to the [hospital]. And I was there until after Christmas.

 

Deborah' And you were then in intensive care for a while.

 

Stella' Was I? I didn’t know that.

 

Deborah' Yes, then Mum went onto the acute stroke ward and stayed there for a month, then you went down to the next level and stayed there for a month, then Mum did have physio while she was there.

 

Stella' I found it very hard going there, it was quite painful, and I can’t move my fingers now, so any piano playing is out of the question.

 

Deborah' The left side was affected, and as Mum only had the sight of one eye, her good eye - which was on her left side - was also affected, so that takes out reading and writing, because of the left [side paralysis] - Mum was left-handed. So everything stopped, didn’t it?

 

Since her stroke Stella now has short TIAs every now and again and which make her feel disorientated, and afterwards she very tired

Tell me a bit about the TIAs that happen. How often do they happen? How many have you had, do you know?

 

Deborah' Mum’s had quite a few. She had one two weeks ago and then she had one yesterday.

 

Stella' Yes.

 

Deborah' Tell Louise how you felt about yesterday’s when you---

 

Stella' Well, I was just sitting there having my hair done.

 

Deborah' And how did you feel when you woke up?

 

Stella' I don’t feel anything, I didn’t feel anything, I didn’t see anything. Because I, I’m a great one for noticing things. I think that’s partly from teaching. When you’re facing a class of children you don’t want to miss any misbehaviour.

 

Deborah' But you didn’t feel..............

 

Stella' I didn’t feel anything different yesterday.

 

Deborah' And when the TIA happened, you can’t remember how you felt during it?

 

Stella' No, no, you told me I was babbling.

 

Deborah' That was the one before. I phoned and the nurse - Mum didn’t pick up the phone and I knew something was wrong. And so eventually - I kept on calling - and eventually the nurse picked up and Mum was babbling incoherently. The nurse put the phone to Mum’s ear but I don’t think Mum could hear me - and I couldn’t understand what Mum was saying. And I think that TIA went on for a lot longer than the one that Mum had yesterday which lasted 3 minutes.

 

Stella' Just a moment, yes.

 

Deborah' And then how do you feel, how did you feel after the TIA yesterday?

 

Stella' Yesterday, nothing. I just came to

 

Deborah' And did you feel tired?

 

Stella' I did feel tired, yes.

 

Deborah' But you didn’t feel sick or headache?

 

Stella' And the one I had the day before, the few weeks earlier, I was absolutely flaked out. I was so exhausted. I said, just said to them - they had me in the hoist - and I said, “Please put me on the bed. I must go on the bed.” I was exhausted.

 

Deborah' There was, not so much the one yesterday, but the one two weeks ago, I think because it went on longer, Mum, the next day - because that happened at 6 o’clock in the evening - the next day Mum was very tuned in with everything. We had very positive conversations, and both my brother and I were quite shocked that Mum was so much more focused. However the day after that, Mum was very confused. Mum thought I was in England, when I was still abroad, didn’t you?

 

Stella' Yes.

 

Deborah' So there was a lot of confusion going on. Also Mum wasn’t sure that this was Mum’s right room, and we’ve had this before.

 

Stella' Yes, I thought I was in the wrong room, and so Deborah said to me, “Look at the pictures on the wall. They’re your pictures from home.”

 

So it’s that disorientation when you just don’t know where you are, what’s going on?

 

Deborah' Which is what the TIA seems to produce. But obviously only when it’s a long period of time that the TIA goes on. For the shorter ones there isn’t the confusion.

 

How long was that first, the first one you were describing?

Deborah: The first one, 1think it was probably a lot longer than five minutes that it went on for.

But still minutes rather than hours?

Deborah: It wasn’t for hours.

No.

Deborah: Definitely not, no. I think I would need to check with the nurse as to how long it went on, but I know yesterday’s was just three minutes.

Stella is not usually aware when has had a TIA. Her daughter explains how she looks blank for a few minutes and it tires her out

Deborah - Now in May, we were sitting outside talking to Mum, and Mum had sunglasses on and while we were talking, I realised Mum’s facial expressions hadn’t changed. I asked her if she was alright, and I took her sunglasses off and she was just [makes a blank face to illustrate]. When I asked her if she was alright - nothing. Mum couldn’t say anything and her expression didn’t change. So we got Mum back here and the medical staff came. And Mum came out of it. So again that was probably a minute or even two minutes at the most. And Mum just felt tired, but there wasn’t any confusion then, because it seems to me the short TIAs you can get through, but if they go on longer than five minutes, then--

 

Stella - They sap your energy.

 

Deborah - Yes, and the confusion might just be because Mum’s tired and whacked out from it.