Motor Neurone Disease (MND)

Tess - Interview 44

Age at interview: 52

Brief outline: Tess met her partner, who had already been diagnosed with MND, when volunteering at a sailing club for disabled people. She now lives with him and is his main carer. (See Marcelin, MND37)

Background: Tess is an office worker, living with partner, 1 adult daughter. Ethnic background/nationality' White British.

Audio & video

Tess met her partner, Marcelin, about three years ago in 2004, when she was working as a helper at a sailing club for disabled people. He had already been diagnosed with MND some years before, and had moved from France to England. At first they continued to live in their own flats, but as their relationship grew they decided to move in together. Tess had worked previously with a charity providing holidays for people with disabilities, so she was used to relationships with people with disabilities. Gradually she started helping him with showering and dressing, and it never felt like she was his carer, although in fact she now provides nearly all the care support Marcelin needs. They have a small amount of paid carer time each week to help with some household tasks.

Tess did think hard about what it would mean to start a relationship with someone with MND, and at times it was quite worrying. She wondered if she would be able to cope, and felt it wouldn't have been fair to Marcelin if she wasn't sure. As both of them had previously been living alone, it also took a bit of adjustment to get used to living with someone else, but now they feel very content and settled together. At first she found herself thinking quite a lot about the fact that his illness was terminal, but it has helped that his progression has been quite slow. Now she is able to put it to the back of her mind most of the time and take each day as it comes, enjoying the time she has with him. 

They both work full-time so they have an early start to get themselves both up, washed and dressed in time. Marcelin helps with any household tasks he can, such as doing the washing-up in the evening. Mostly they stay in on weekday evenings but like to go out at weekends to the cinema or for a meal with friends. Tess also tries to meet up with her sisters every couple of weeks, and goes out to badminton. She does find it worrying sometimes when she has to leave him on his own at home. Her employers have been understanding in letting her take time off, for example if Marcelin is ill at home.

Tess had been used to living on her own and managing everything for herself, so she is not worried by having responsibility for most of the practical aspects of running their lives. Although sometimes she worries about how she will manage in future, she feels Marcelin's own positive attitude has rubbed off on her, and given her a new perspective on life. 


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