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Audrey - Interview 02

Age at interview: 70
Age at diagnosis: 62
Brief Outline: Audrey first noticed symptoms 11-12 years ago. Diagnosis confirmed three years later (1995). Still living at home with support from a daily carer and respite care in a hospice.
Background: Audrey is a retired post office clerk, widowed, with 2 grown-up stepchildren. Ethnic background/nationality: White British.

More about me...

Audrey first noticed symptoms 11 or 12 years previously, when she started finding it difficult to peg her washing out on the line. Around the same time, her husband was terminally ill. Although she had some investigations at that stage, they were inconclusive. About eighteen months after her first symptoms, her GP mentioned it might be motor neurone disease. But when she went to see the consultant neurologist she was told the diagnosis was not proven, and not to worry because she would probably recover in 3 or 4 years. She has never understood why she was told this. MND was finally diagnosed about three years after her first symptoms appeared (8-9 years before she was interviewed).

At first she was very despondent and felt she would not live much longer, but gradually she became more optimistic and felt able to plan ahead again. She tries to make the most of each day.

Audrey's speech has been affected, and she now finds it difficult to stand for a long time or walk far. She needs a wheelchair to go out. A carer comes every morning to help her dress and wash, and a nurse comes three times a week, otherwise she can still manage at home on her own, with support from friends. She goes into a hospice every three months for a fortnight's stay. She could attend a day centre there too, but she prefers to be at home. 

She has made a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' to say that she does not want a tracheotomy, and does not want any artifical feeding. Her ideal would be to be admitted to the hospice when she needs more care, but she knows this may not be possible.

 
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The first thing she noticed was difficulty pegging clothes on the line.

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I was diagnosed in '95. I had it a long, long time before that and I knew that there was something wrong about the middle of '92 and in as much that I couldn't bend my fingers to peg clothes on the line and also the movement of the line made me want to fall over. And so that was the start that I realised something was wrong.

 
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She does not want to go to the day centre at the hospice where she sometimes has respite care....

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The only thing that I wouldn't do is to go a group where they're all motor neurone. When I'm in the hospice there is at least one gentlemen, in the day centre, who has the same. I don't want to speak to him, not because I don't like him but I don't want an afternoon of people talking about illness but there is no other reason'.I know the worst scenario, I mean I've seen the people on the television and I just hope, dear God, that isn't me. I'm not a day centre person. And I'm, I've got more than enough to amuse at home.

What do you call a day centre person?

I don't know, but you know how some people love the WI or - well, I'm not that sort of person.

Do you mean like some people like groups?

Yes. I think people get a comfort, possibly. I mean, I wouldn't want to sit and paint and knit, and that isn't me. And I don't want to know about where they live and what they do. I'm very interested in people, but I don't just want to know their business, that isn't. And I find that sort of thing a very personal.

 
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As she's 70 she's more interested in quality of life than quantity, but she would probably think...

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There is an end we're all sure of, isn't it? And I am 70, so it's not as if I'm 20 or 30. My views would be vastly different, of course. And I think you have one chance in life. Whether you do or don't make something of it is up to you. And I think it's about not your length of life but the quality of it, really. I think if you asked a young mother with little children - and I know I had a friend who this happened to, and she was diagnosed and died within a year leaving 3 little children - well, she wouldn't have the same view as me. She's not the same person that I am.

 
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She's happy entertaining herself at home and seeing friends, but is sad she can't do the...

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When my carer's gone, which is about 9.00, I get my breakfast, whatever I fancy, watch an hour of television and then I wash up and get something probably ready for our meal later, possibly. And then my nurse comes, Monday, Wednesday and Friday and my friends all come those days so they can take my bandages off and wash my legs for me. And then my nurse arrives eventually because she's very busy and by then it's normally lunch-time, at least 12 o'clock, possibly 1. And in between that I've had phone calls and I ring my daughter and friends and they come in. I don't really know what I do.

And I've got tapes and I've got Cds and normally by 10.00 or half past I have a friend that lives on her own, she pops in for half an hour, an hour and no, I'm never lonely and I'm never fed up or bored. And I go and sit in my lean-to out the back here and look at my garden and alter that in my mind and no, and I read a little, do a crossword a little. No, I've no set pattern.

I mean there are things that I used to love. I used to adore gardening, going to antique auctions or going to an antique market or nurseries. I used to enjoy that and walking and going round wherever. That isn't possible, so why torture yourself imagining what you would do when you can't?

I mean I was depressed for a spasm a few months ago because my friend had wheeled me up the garden and it was a dead loss and that did upset me but only momentarily because I know I can put it right. My friend wheeled me up my garden to have a look and I realised how many jobs there were to be done and the garden looked awful and that did for a day upset me. It made me very tearful. There was so much I hated about it and then I thought well, what's the point of crying? I can do the only thing I can do and that's find someone to do it, which I have.

 
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She has made a Living Will (ADRT), and feels it is her right to decide what she wants, whatever her...

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My family know I've got a Living Will (ADRT). And I've got that, and they've got that at the hospice and I've no doubt that I've no problem there, really, honestly. And I hope if that awful day cometh, I'd rather be cared by my friends and family, most of my friends or the hospice' I've made all the decisions that I want. I'm not interested whether my family like it or my friends like it. That's for me to decide. I don't want a tracheotomy and I don't want to be force-fed. I've seen that once and I cannot see the point of it. I don't want my life to drag on when it's not necessary and they're fully aware at the hospice, they're brilliant.

If I couldn't look after myself and I had the choice of a nursing home, well, those that I've seen, no thank you. And the care I've seen, no thank you. I certainly wouldn't go into a hospital. If [the hospice] could, that would be my dreams come true.

I have enough trust in them to know that they wouldn't push me home if they didn't think I could cope and I certainly wouldn't go to the hospital.
 
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