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.

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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. 

They get up early so she can help her partner get ready for work before she goes to work herself....

Right, well, I mean, we start off with, we wake up quite early about sort of half 5, quarter to 6 because Marcelin needs quite a bit of like help with personal care' showering, shaving and that sort of thing. So we, we get up as I say about half past 5, quarter to 6. I usually, we've got into quite a routine now with the things so that I can shower first and then he, and then I can shave him and then he can shower. So it's quite an early start because, I mean, I, he leaves, his taxi picks him up about half past 7. And so and then I go to work soon after and start work between sort of 8 and half past. And but it seems, it's not hard work but by the time I get to work I feel you know like [laugh] I've been awake for quite a time really and have done quite a good day's work. Not a good day's work but you know, quite a bit of work already [laugh]. So people often, like people at work are not sort of aware of what I, you know, how much I sort of do. So they often say, 'Oh you know you've had a lie in'. And like I have to say, 'Well not, you know, sort of, sort of thing, you know'. Just brush it off really but. So of course we're both working full time.

So it seems like yeah it's not hard work but it's just because you, you've had to get up sort of fairly early for both of us. You know, it's, it's a, quite a long day. I mean during the day of course we're both working and then usually get home about half 5, 6 o'clock. Marcelin - and then I'll sort of start doing some tea or something. And Marcelin usually comes in perhaps a bit later if he's been to, to university and we have a, we always have a meal together and then it depends on how tired Marcelin's feeling. I mean sometimes he'll go to bed fairly early. Other times he'll stay up a little longer but It's, he does try sometimes to do the washing up for me because he can do that, sit by the sink. And that helps you know and it's a, because, [pardon me] because I'm not always used to, because I'm not used to him doing anything. So when he can do something it's really quite nice because otherwise it, it's I find it. You need to sort of be quite organised, you know. Otherwise things get left, you know, and then you're having to constantly catch up like you know if I've left the washing up in the, from one night and then you know sometimes it's still there the next night if I haven't had a chance to do it.

And it's not that there is a lot of work to do but sometimes, you know, if I need to help Marcelin you know just finding, sometimes he's trying to find some of his work somewhere and you know even that it, it's sort of takes you away from other things, doing other things. So I mean it's not a problem but it just means that of course you're not able to prepare then for the next day. So, I do find it sort of quite good if I can keep organised and on top of things and that way it doesn't become a problem then.

Sometimes she tends to look on the dark side, but her partner's positive attitude rubs off on her.

Yeah he is. Yeah he's very positive and that, I think that rubs off. It's starting to rub off on me really in that I've sort of. I always thought I was a positive person until I met Marcelin and then I realised I wasn't really. But his positiveness is sort of rubbing off on me and so I suppose that, that sort of helps. It does help a lot. I mean there's times obviously when things get on top of him but on the whole he can always see the positive side of things. And that really helps me, you know, to sort of encourages, to encourage him as well, you know. It's a, you know and to support him in that as well rather than. That's something I think I find quite difficult. I've been some, I've been so used to sort of looking at the black, the dark side of things or looking on the dark, or the, being negative and thinking, 'Oh well things aren't going to work out'. But it's been, I think I, I've, I was still feeling, I was still sort of had negative, negative feelings and thoughts and it wasn't helping Marcelin really. It was, it was. He was sort of trying hard to sort of to pull me up and be positive and really I should have been the other way round, you know because you know as he says I have, sort of I have my health. I have, you know, my daughter and my granddaughter, you know a lot of family. And he unfortunately hasn't got all of these things. So that's been a real eye opener for me.

You know, because as I say I always thought that I was a positive person but I didn't [laugh] it wasn't until I met Marcelin that I realised that I sort of looked on the black side a bit. And it, I realised how unfair it was for me to sort of be looking on the black side when I had so much and then Marcelin was, was trying hard to lift me up out of a, not depression but just got a bit low. And you, sometimes you don't see, you can't see the wood for the trees sometimes [laughs].

It's not always easy to stay positive.

No, no that's right. No because you know, you tend. No that's right because you tend to sort of think, 'Well, what if?', you know, 'What am I going to do when, you know or if he's, no if he's bed bound or something you know and that.' So and it's hard. Yeah it is quite difficult then to remain positive because as you know that it's you that's going to have the responsibility of sort of dealing with things. And yeah wondering, you know, 'What do I do in this situation?', and that.

But I think on the other hand that that because I'd been on my own for so long because I brought my daughter up on my own. And I was always used to sort of dealing with things myself and you know just getting on with it and things. I think that, that's helped now because you know I still, I'm not used to sort of leaning on somebody to help. You know I'm, I've been used to dealing with things myself so I don't feel that I'm hard done by in a sense, you know, not having Marcelin. I mean obviously, he's there for me in other ways but with, you know like changing a light bulb or something [laugh] I've always been used to that so it doesn't, I don't think anything of changing the light bulb now. You know or trying to, having to screw up a little screw on his wheelchair or something. I'm just used to doing that and things that way. Whereas maybe other people might, it might come as a big shock to them thinking, oh well my husband always did that or my partner always did that. You know but never been used to it. So I suppose that helps you know because you don't feel like you're missing out or.

When Tess first met Marcelin she was worried about getting too close and afraid of losing him....

It's, I think where I am at the moment I've become quite, 'quite used to being, living with somebody who I know has got a terminal illness. I suppose it's different for Marcelin because he's got the slow progressive type of MND it, it's not, and he seems to keep fairly well at the moment though he has had some bad times in the last three years. But maybe I've got a bit, bit used to being with, to living with him and I'm expecting that, well just living one day at a time really. Just taking each day as it comes. 

I mean when I first met him I was very aware of it and my emotions were very much up and down. For other personal reasons as well because I'd lost a sister at the same time. So it wasn't really the best time to be sort of taking up a relationship with somebody who had a terminal illness because I was worried that I would lose Marcelin as well. But so I did find it emotional like the first year or two just sort of getting used to thinking well, you know, he might not be here. You know I don't know how long he's going to be around. 

And that was, initially when we first met that was one of my fears. I didn't really want to, I was concerned about getting too close to him because I thought, it didn't seem to make much sense really to be, sort of to having a relationship with somebody who, who might not be here next year. Because you know we don't, didn't know really quite how long he's going to be around and of course we still don't. But maybe over the couple of years, maybe I've just got don't say complacent about it but I just appreciate the time that I've got with him. 

And I make the most of that and I must admit sometimes I do forget that Marcelin's got anything wrong with him. I know [laugh] that's silly to say when he's in a wheelchair but sometimes I do forget that you know he might not always be here. But I do, I just try and put that to the back of my mind really because otherwise it just spoils the time that you have got with him. So it, yeah, it has been emotional but I would say in the last sort of six months probably I haven't thought of that quite so much. Whether that's wrong or whether I'm just denying things I don't know but.