Audrey – Interview 02
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.
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.