Motor Neurone Disease (MND)

Roger - Interview 41

Male
Age at interview: 59

Brief outline: Roger was married to Teresa, who was diagnosed with bulbar onset MND. She died a year ago, aged 64, less than six months after the diagnosis.

Background: Roger is a mini-bus driver, widowed, with 5 adult children. Ethnic background/nationality' White British.

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About seven or eight months before she was diagnosed, Roger's wife Teresa sprained her wrist and it seemed to take a long time to recover. She also started slurring her speech, and somebody who noticed at a birthday party thought maybe she had drunk too much. At first the slurring came and went, but the family also noticed she was becoming agitated, and persuaded her to see the GP. The GP referred her to a neurologist. They were told the waiting time for an MRI scan was several months and so they paid for a private scan. They were relieved when the scan results ruled out a stroke or brain tumour. Further tests were carried out, and eventually they were told she had the bulbar onset form of MND (progressive bulbar palsy). While waiting for the results they decided to go on a special family holiday to Spain while they still could.

At first Roger hoped they might find some treatment to prolong Teresa's life. She volunteered to take part in research trials, but was not as optimistic as her husband that anything could be done. Her philosophy was that she would make the best of what time she had left, but she was more worried about the effect on the people she would leave behind. She was a strong and independent woman, who tried to keep life as normal as she possibly could.

As her ability to communicate worsened, she decided to give her husband power of attorney, although he found it quite difficult to arrange the legal process. Roger's trade union helped him find a lawyer. She found the loss of speech frustrating. Roger became her translator, and she used a combination of word lists, a magnetic note board, sign language and a Lightwriter to communicate. Sometimes they felt staff tried too hard to keep communicating directly with Teresa, when in fact she preferred to communicate through her husband. They knew this was well meant, because staff want to guard against carers intervening inappropriately against the patient's wishes, but felt staff also needed to be sensitive to individual preferences and recognise she might find it stressful.

Teresa's condition deteriorated rapidly, and within six months of diagnosis she was having severe swallowing and breathing difficulties. She had to be admitted to hospital for a chest infection and became very weak, but she had decided not to have invasive ventilation. Although many individual staff were excellent, they felt sometimes that their wishes were not respected or communicated effectively between staff, either in hospital or in the community. As a former nurse, Roger felt it was perhaps easier for him than it would be for other carers to act as the point of continuity of care. Teresa died peacefully in hospital, with Roger holding her hand. After 23 years together he misses her presence profoundly.

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