Motor Neurone Disease (MND)

Jenny - Interview 01

Female
Age at interview: 49

Brief outline: Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.

Background: Jenny is a married housewife and mother of three children aged 18, 16 and 13. Ethnic background/nationality' White British.

Audio & video

When Jenny's 81-year-old father returned from six months abroad, it was clear that he was having problems walking and using his hands, and his speech became slurred. His GP referred him to a neurologist and after 2 weeks of tests in hospital he was diagnosed with MND. The family were told the diagnosis before he was, and looking back his daughter thinks that he should have been told straight away.

To his family, his deterioration seemed very rapid, and they were concerned to find appropriate care for him as soon as possible, although he himself found it hard to believe the diagnosis. He spent five weeks in a stroke unit while the family searched for a place in a nursing home able to accept people with MND. Then he was moved to a hospital neurology unit, where many of the patients had severe brain injuries and the staff were experienced in looking after people with paralysis. By this stage Jenny's father had no movement left in his arms, legs or body, and within two months he also lost the ability to swallow and speak. He found it very hard not to be able to communicate his needs or feelings effectively, or express humour. His daughter felt it was not until he lost his speech that he really accepted how bad things were.

Jenny was most worried about how he would die and was afraid he might choke to death, especially if he was alone at night. She believed he was also very frightened of this, although he did not want to talk about it much. The family also had discussions about whether or not they should give permission for doctors not to resuscitate him. Her father had always said he would not want to be kept alive if things got really bad, but he still felt he had not got to that point and he did not want to die. In the end, they did not need to make a decision because he died peacefully and suddenly one morning. She wants other people to know this and not be afraid. She found it especially hard to know how to support him in facing death because he had no particular belief system or faith in an afterlife.

Jenny and her stepmother were glad they were able to spend a lot of time with him in hospital. Even in units where staff are trained to care for people with paralysis and communication difficulties she feels they do not have sufficient time, and sometimes make assumptions that someone is less aware than they really are. Her message to the health service is that staff need to be able to spend much more time and effort communicating with patients, reassuring them, finding out more about them, and talking about more than just their physical needs.

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