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Interview 18

Brief Outline: At 80 her mother was still a vigorous, independent woman. First care home insisted on her being sectioned so she was moved to a locked assessment ward. Appalled by this her daughters found a secure long-term home for her where she spent the last 18 months
Background: Carer is a doctor sharing the distance care of their mother, with her sister (Interview 4). She is married with 2 children.

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Suspects that her mother had micro-vascular disease dementia and wonders if it was connected to breast cancer.

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Suspects that her mother had micro-vascular disease dementia and wonders if it was connected to breast cancer.

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I've got very strong, views on my mother's case. You see I don't think my mother had Alzheimer's, I think that my mother had micro-vascular dementia. She, hers was very specific in that it was memory loss and then everything that's followed from that with loss of, it was loss of facts, it wasn't loss of sort of the learnt experience.

You see she could still read, she would read things out to me but couldn't remember what they meant. She'd read perfectly, and she'd read upside down even, you know the actual activity of reading was still there, but she couldn't remember what it meant, what the words meant. But she'd read it properly and coherently. And as I said to you before mum was rational, she was definitely rational she used, her limited information in a very rational way. And, so she had just lost memory, but profound loss of memory. 

And she didn't lose any - in mum's case - she didn't lose any physical attributes. She was dextrous right to the end, she walked well, she was particularly dextrous, with her eating I watched the last time I ate with her and she, I never saw her having to be fed except that time when she was, when she was sedated. She, ate beautifully, it was a pleasure to watch her eat, she cut her food very neatly and she put it in her mouth, she didn't dribble, she didn't, she kept all her, she kept all those sorts of skills.

She had a blouse with a bow on and the bow would be nicely tied. So mum's was very much a memory loss which totally altered, altered her behaviour and her ability to communicate in every way but it wasn't as I say a loss of learned skills. And when she was admitted for invest, for yes, 'investigation' as they call it, after she was sectioned, I don't think much investigation went on, they did say to me over the phone it was micro-vascular dementia, which I could have told them. 

But I for me, and I wouldn't altogether be able to prove anything, it dates from the time when she had cancer of the breast in 1978 and she had secondaries almost immediately. She had her first secondary six months afterwards in the rib and I saw it, so there was no doubt about it, she showed it to me, I, I saw the, I felt the first lump, people have doubted her diagnosis because she lived for twenty, she lived for twenty years after her diagnosis, so people have been sceptical about whether she truly had it, but I have no doubt about it.

I would like to have known really but, the more I've thought about that recently, the more I think that's, that's how her microvascular problems stemmed from. And, yes and her sister who is quite like her and as I say is still alive, and you know is just so different, you just know that something else happened with, you just feel something else happened with mum that my auntie didn't have because then otherwise they're, they're so similar and I think, that's it.  I don't think mum had any cerebral secondaries, there was a question of one at one time but, that would have caught up with her and didn't. 

So I don't, think that had any connection but I do have another little thought. In my, in my dissertation there are three people I mention' there was my mother, my mother-in-law and my, neighbour across the road (a different neighbour, a neighbour further on), her mother who took a, whose dementia took a similar pattern to my mother's. I think hers was micro-vascular as well. 

They all survived carcinoma of the breast and they had all had tamoxifen. And I would just be very interested to know if there is any association. Mother-in-law had, my mother-in-law didn't have secondaries but her dementia began a year or so after that and it was the same for my neighbour across the road, her mother had a carcinoma of the breast and, they’d all had some tamoxifen. I don’t know if I’m blaming tamoxifen, I don’t know if I’m blaming the carcinoma, I don’t know if I’m blaming the hormonal imbalance but, it’s a bit coincidental, so that’s my other little thought.

 

Describes anxieties about the neighbours and fears for their mother's safety.

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Describes anxieties about the neighbours and fears for their mother's safety.

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But all this at the time, we're talking about, she was still independent in the flat. I was very worried about, we were all very worried about the security of it but after a bit we decided there was nothing, just nothing we could do. I didn't realise at the time that this man in the flat actually in the block of flats, actually had a key. 

The lady next door was frightened of her, the lady next door was worried about her wanderings and the fact that she left, the door open and she was also worried about her cooking on the gas stove. And so were we.

She always remembered how to use the microwave which was good, so she did use the, she, the microwave what she used up till the end. I think we disconnected the gas stove. I've got a feeling we disconnected the gas stove in the end. And, and she didn't particularly notice I don't think that it had gone. And she, and so when she did use things it was just the microwave, so it was lucky that she'd, the microwave was part of her, her sort of memory bank. 

It was, managing in the flat. Yes. She actually kept herself very clean, she always kept her clothes beautifully clean and the flat looked clean, if you, if you didn't look too closely. I don't know how it, how she hoovered but it always looked very tidy, it all looked very nice actually it was, it was always a pleasure to go in there.

 

Describes the unexpected advantages from letting her mother be seen as an 'eccentric old lady'.

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Describes the unexpected advantages from letting her mother be seen as an 'eccentric old lady'.

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I went to see her, and this was so unlike my professional mum. She had a skirt on with bright red flowers, it wasn't her skirt, and a jacket that was a pink, a bright pink, shocking pink, hand-knitted matinee jacket, which again wasn't hers. She had white tennis shoes that weren't hers, navy blue tights that weren't hers and she had her nails painted with bright red nail varnish!  

Which, my mother's never worn in her life, well she might have done in the forties you know, but that was, bright red talons! 

And, and I said, I was going to take her out and, into Bath for the day, it was the summer and I said 'Mum shall we go and change?' 'Why?' she said 'I'm fine.' It was all nice and clean and neat but it was a bizarre collection of clothes. I said 'Well shall we take your nail varnish off?' She said 'Why? I like it.' So I thought well OK, if that's what she likes.

And I took her out into Bath and it was obvious you know that she was so, she was sort of, dressed inappropriately and people were so kind. Immediately they realised that here was somebody who, who was just a rather, you know an eccentric old lady who wasn't, you know wasn't trying to fit in with society. They, they couldn't have been kinder, we had a lovely day, people fell over backwards to be nice to us. I said to mum 'We're catching a bus.' Mum stood in the middle of the road with her hand up to stop the nearest bus. And the bus driver stopped and the bus conductor sort of helped us on and they said 'If you want to stop anywhere you just tell us and we'll stop the bus for you,' and every time we crossed the road people were nice to us.

And once we'd crossed that barrier of allowing, of letting her be non-normal people were so sweet and that was a lesson to me, that was lovely. We had a really nice day out and we both, yes I mean we both sort of enjoyed it and people smiled at her, you know she'd smile back and I smiled back and, we sort of, yes, we enjoyed the minor drama of it all.

 

Their mother got lost on the way back from Australia.

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Their mother got lost on the way back from Australia.

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Mum had got off the plane, she'd got on a bus, she'd jumped off the bus for some reason as far as we can gather because she didn't go to the place where the bus was taking her. I think the bus was just taking people for, taking people to some rest stop before the flight continued, but she was obviously totally confused, had no idea where she was and had jumped off the bus. And was eventually found, I don't know how she got there, she was found on, in a police station in Athens and she was, she refused to move, literally refused to move.

I don't this the Vice Consul, anybody could get her to move so they had to keep the police station open all night and she, mum was sitting there, they couldn't get her to go to a hotel or anything. Because she, she was obviously frightened, poor mum, I mean she was, and she just felt, she was just going to stay where she was because if she went anywhere else, I think she was just, she was just scared.

And, the Vice Consul, she was of course, she'd come from Australia and this was December and she was in summer clothes and the Vice Consul took her out and bought her a coat, which was very sweet of them. And then got hold of us and my sister flew out the next day, where she was still, I think she was still in the police station, and mum, mum just said 'Oh, I thought [my sister] was coming.' That's me! So my poor sister after you know all this effort, money and trauma of rushing out to Athens…

That was her response, and my sister was so good, and she took her to a hotel and then she brought her home and mum was quite, even when she got back to England mum just wanted to get on a train on her own. And so she actually took herself, I think she took herself back to Bristol because she was still in this terribly independent mood. Anyway she got home.

And we had all sorts of problems after that trying to get her luggage and so on, but, but the whole episode, she remembered it partially but she thought she'd been in a Nazi concentration camp! She'd obviously been scared, she really had been scared. And when it came to collect, eventually we managed to collect her, find out where her possessions were but only three months later and they sent them to Bristol airport.

 

There were several crises before her mother agreed to stop driving.

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There were several crises before her mother agreed to stop driving.

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She drove her car endlessly and she would drive up here non-stop from Bristol, having gone round Swindon about three times and sometimes around the M25. And once when she left here she didn't get home for two days because she literally went round south London and up to Swindon and around Shipham, but she just loved driving her car. But she was the one who actually stopped to our great amazement. No, no sorry I must digress. So she had her car and there's another story about how she got lost and, but when she came back from this episode when she got lost - no, sorry, let me get it right - before she went off, the car was stolen.

She rang me up one day and she said 'The car's been stolen.' And I couldn't stop, inside myself I was really rejoicing, I thought thank goodness, I rang my sister in great excitement and said 'The car's been stolen isn't this wonderful.' You know we couldn't have asked for better.

And, so the car had been stolen and we were thrilled but we knew she wouldn't be able to manage the documentation for applying for, her - what's the word I'm looking for - for her, the insurance. And so while she was away we established, we found the insurance company and we sent, we sent what details we could, it took endless phone calls because we were doing this by proxy to Scotland and they agreed to send us the money because we said if they send, if she was sent the cheque it would just go into the bank account and get lost in the way everything else got lost. So we said would you send us the cheque.

So they were, they were very accommodating and they got, they got us the cheque sent, the cheque sent to us. The very day we got this transaction back she rang me and she said 'I've found the car.' I though oh no. The police had found the car in a nearby street where of course she'd just left it and forgotten about it. The tax had run out that was why somebody had at last notified the police and, so that they realised then it was an abandoned car and notified the police. So the police found it, found the owner, found that she was the owner.  

Mum as I say was very plausible, they gave it back to her. It had no tax, no insurance and it didn't belong to her anymore because the insurance company had actually paid up, but she was thrilled and off she drove and continued driving. And, she did actually, because she had a lot of rational sides to her, she did actually take it to the garage to see that it, to see if it was road-worthy and somehow or other they got her, they did get her some tax. They did get her a tax, now did they get, they must have got her some insurance as well for that, but it still didn't actually belong to her.

But anyway for a long time - I say 'long time', a few weeks - she drove it around without tax, insurance or, or even ownership but somehow it did happen that she got, she got the tax and insurance and we had to pay back I think the money. Yes, I can't remember how we did that but we paid it, we paid back the money in the end to the insurance company so it was her car eventually.

And then one day, she came back from London and she realised that she was just too dizzy and too confused, she didn't even know where her house was. And she just, she, she said 'I don't think I'm safe to drive,' and we were just amazed with her insight and she also did say 'I'm not, I'm going to sell the car.'

So we got over that episode, we got over that side of things, amazingly with greater ease than we ever thought because she adored her car and the last thing she was ever going to give up was the liberty of driving. And, but she just did that spontaneously

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