Motor Neurone Disease (MND)

Dick - Interview 42

Age at interview: 55

Brief outline: Dick was married to Di, who was diagnosed with MND two and a half years ago (2004). She died 6 months ago, aged 64.

Background: Dick is a local government officer, widowed, with 2 adult step-children. Ethnic background/nationality: White British.

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Dick's wife Di first noticed stiffening in her fingers and fasciculations (muscle twitching) about 3 years ago (2003). A friend who was a speech therapist told her it could be MND. After their GP referred them to a neurologist, it took about six months to get all the tests done and confirm that it was MND. Dick felt angry at Di's diagnosis, but together they decided they did not want to spend the rest of her time trying to fight it. The first thing they did was go on a wonderful holiday to Venice.

They chose not to find out more than the basic information they needed at each stage. Dick describes his reaction as 'graduated denial' - hoping each plateau would last, and dealing with each change in her symptoms only when it happened. They tried to keep doing as many normal things as they could, such as trips out, going to the theatre, and eating in restaurants. They became increasingly close during that year, and he was determined that he would care for her himself at home as long as possible. His employers were supportive in enabling him to work from home.

First Di lost the use of her arms, and then speech and swallowing became difficult. Finally she found it harder to walk or stand. As a trained shiatsu practitioner Dick was able to lift her himself. Social Services helped them to make their home wheelchair accessible and to adapt the bathroom, although the new bathroom was not entirely successful. 

He started to find it too exhausting to manage all the care by himself. They decided to organise home carers, but managing the direct payments system and finding someone was difficult. They soon found they needed more help and Social Services organised agency staff to come in. However, they felt the quality of care was variable, and it was stressful dealing with a succession of different people, or days when no-one turned up at all.

Losing speech was one of the hardest things for Di. She used a letter board to communicate for some time, which was a very useful way of enabling her to still communicate. As Di's symptoms deteriorated, she decided it was time soon for her to die, and they said their goodbyes to each other one night. Di made her own decision to stop eating, and their GP and district nurses gave them great support during this time. She had a Advance Decision to Refuse Treatment (ADRT) previously known as 'Living will' in place but in the end it was not needed. Three weeks after she stopped eating Di died quietly at home. Dick has had bereavement counselling from the hospice which Di used to attend, which has been helpful in coming to terms with her death.


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