Caring for someone with a terminal illness

Jane & George ' Interview 39

Age at interview: 44

Brief outline: Jane's husband George was diagnosed with Motor Neurone Disease in 2007. Jane quit her job and became his fulltime carer. His MND was fast progressing and he died just 9 months after the diagnosis.

Background: Jane works for the Motor Neurone Disease Association. She is a widower and has three children. Ethnic background' White British.

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Jane’s husband George was a police officer and played a lot of rugby, so when he developed a limp they thought little of it. However, after a few weeks it did not get any better and so he sought help from his GP and the police surgeon who both referred him to a neurologist. The neurologist examined George and explained that he had a neurodegenerative disease. Jane immediately questioned if it was Motor Neurone Disease (MND), but the neurologist told them it was not and arranged a follow up appointment for when they had the test results.

Jane initially felt relieved to be told George did not have MND; however she then did her own research and concluded that he probably did have MND after all. The follow up appointment was four months later and by this time George was using a wheelchair. During the consultation the neurologist confirmed that George, at 45 years old, had MND. Jane describes how even though she expected this diagnosis, she felt absolutely ‘devastated’. They were also told that it was slow-progressing and he could expect to live for 3-5 years, but actually George died just 9 months later. Jane was annoyed that the neurologist had not been completely honest with her with the initial diagnosis and the subsequent prognosis.

George and Jane have three children and it was very difficult to explain the diagnosis to them. Jane decided to quit her job as a nurse and to care fulltime for George. They had previously taken out insurance to cover terminal illness and he still received a wage from the police force. With her nursing experience and them being financially comfortable Jane was in a good position to take on the care responsibilities.

They were both adamant that they did not want George to die in hospital. Jane remembers one particular night when George was very ill with respiratory problems. She spent most of the night on the phone to the out of hours GP surgery. Eventually, hours later a GP came out to the house and insisted they took him to Accident and Emergency. Jane would not allow this to happen as she believed it would be of no benefit to him and worried he might die there. The next morning they contacted the hospice and palliative care consultants visited their home to assess him. They told her George would die soon and Jane appreciated their honesty.

On the day that George died a lot of family happened to be visiting him. Jane was alone in the room with him and he had a respiratory arrest and died. On reflection Jane describes George’s death as ‘a good death’. She believes that he did not suffer at all when he died and wanted to be alone with her. After George’s death the family have found life difficult and coped in different ways. Jane feels it was really unfair that George died so young, but believes they were lucky to have such a great dad and husband.



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