Audrey - Interview 02
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.
The first thing she noticed was difficulty pegging clothes on the line.
She does not want to go to the day centre at the hospice where she sometimes has respite care....
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.
As she's 70 she's more interested in quality of life than quantity, but she would probably think...
She's happy entertaining herself at home and seeing friends, but is sad she can't do the...
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.
She has made a Living Will (ADRT), and feels it is her right to decide what she wants, whatever her...
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.