But as I say, I was quite fortunate that the company said I could choose my time of leaving. And I chose – because you certainly don’t want to go to the bitter end, and I say that because I could probably have done another month over what I did. But if I’d have done that month, that month of, really, low quality mobility was spent with my wife and it meant that we had a little bit of quality life and a little bit of retirement before we became carer and patient, which was very important, because we have a tremendous relationship. It’s not just the fact that we’re married. It’s the fact that we love each other obviously, but we are each other’s best friends. We’ve always done things together through our life. My interests and her interests are different, but we’ve always joined in with each other’s interests. And I’ve carted her off to trade shows and motor shows and tool shows and events. And I’ve been round cathedrals and looked at bits of ancient stone every there and everywhere. And it’s those sorts of things that build that relationship. And without that I think it would be difficult. Because we can still spend time together. Although we can’t go out as much as we used to, we can still go on the Internet and look at things that are going on in our various spheres of interest and share them with each other still. And she insists that I go out pretty much every day. So I have to get myself up and I have to – not myself, but she gets me up and gets me out. And we go shopping and do all the things that normal people do. It just means it’s a lot more work for her. But I don’t feel I’m left out of anything within that. And we still do the things we enjoy, providing obviously there’s accessibility for wheelchairs and things.

Ha, do you think it’s changed your relationship together in any way?

Very much so. I think it’s brought us together more. Although we were very close, it’s certainly brought us together. The reliability on her and the responsibility on her has changed dramatically. Where I would have been, if you like, in the old-fashioned term head of the household, now she’s the head of the household and really is having to make, the decisions that we would have either made jointly or I would have made she now makes independently. Because I can’t be with her all the time, and because I’m trying to transfer ownership to her so that it doesn’t come as a shock at the end. So the, you know, things like where our money is, where the pensions are, and all those financial sides of things we’ve transferred across. The decision-making on things in the house in terms of decorating or choosing things are, are becoming more Janet’s than joint. And she’s very uncomfortable with it at times. So it’s a transition thing, it’s not sort of just a, a wall if you like goes up. It’s got to be a transition, you’ve got to start doing it and getting the other person used to, you know, taking those things and the changing role. And, yes, you do become somewhat of a child in terms of the relationship, because obviously as you progress so the care becomes more intimate in terms of your needs. And you have to be comfortable with that, both of you have to be comfortable with that, and the fact that that is going to progress. And again it’s a vulnerable thing, you know.

We got very close. A friend actually asked Di, she said to her in the last few weeks, ‘It must have been a terrible year. And Di said, ‘No it wasn’t, it was actually a wonderful year. The comment she made, she said, ‘In the last year I’ve actually learned to accept love fully for the first time and it’s just been really wonderful. And it was the same for me, it was, it was painful – very. It was difficult. It was exhausting, utterly, utterly exhausting. I’ve used the word exhaustion in my life before but I never really knew the meaning of it until then.

So I think it was very important that we really talked openly and freely about how we felt in those last eighteen months. And I think the very process, the very fact of Di’s dying as well focussed our minds. So that many of the – a lot of the trivial stuff that had always kind of dogged our relationship was put aside. And we found it easy to do that. And we made a commitment, really, not openly but there was I think there was a commitment on both of us to just making that last year a wonderful year, you know. And to, we had some disagreements, we had just some disagreements. But we really wanted to, we just wanted to continue to be husband and wife together and to live our lives as best we could as we always had done as far as was possible, despite all the kind of hospital beds and commodes and everything that had invaded our house, you know. And we did that on all levels. I mean we decided that as long as possible we would continue to have a sex life. And I understand from the counsellor that lots of people kind of abandon that and you know. But it was difficult simply because it, you know, sort of Di’s increasing paralysis. But it was meaningful.

I mean, my wife and I, we have thought, because the ill-, because the illness throws up a lot of problems in your relationship as well, which obviously we like, we overcome because we’re, we’re close and everything. But, but it does throw up a lot of problems. And we have thought of, of going to a counsellor together and sort of, you know, to help us deal with the sort of feeling, because my wife’s got very strong feelings about it, I’ve got strong feelings. Sometimes we can help each other and sometimes we, we, we don’t’ help each other and we make each other worse. And that, if we went to a counsellor and talked about it with a counsellor maybe things, we would find ways of working with things so that it would be better for us. Just like any couple might go to a counsellor.

Hmm.

We haven’t actually done it and I guess part of the reason is because, well in my mind I’m not even sure, would there be any counsellor that would know enough, that would, that would know what it was like or would we just have to spend all our time trying to explain to the counsellor what it was like [laughs]. So, so there’s that feeling of like there isn’t really anybody who really knows and therefore there isn’t, there isn’t really anybody who can really help you. So we haven’t really used counselling. But we, I, I still wouldn’t rule it out. We might do at some point, to help us. But it is a two edged sword, you could come out of a counselling session feeling pretty bad.

I think just to tell other people that, ‘If you want to get dressed up, you know, don’t worry about it. Just get everything as simple as possible and reduce yourself to a few simple garments, especially if you’ve got a carer whos not very good at putting clothes on you. I don’t mind having my pants on inside out, but I do object to having them on back to front. So it’s little things like that, which can be quite difficult when you’re trying to explain to your husband that, ‘That’s actually back to front. And he says, ‘Well, does it matter?’ ‘Yes, it does. So little things like that can be a nuisance.

What effect has that, has it had any effect on your relationship?

Yes, I think it has, because he has found it quite stressful sometimes. He’s holding down a full-time job. He also does a lot of research. Every evening he works on his research. So he’s actually doing two jobs, really, in that sort of way. Then he’s got to look after the house. He’s got to look after me and do the cooking. I’ve just persuaded him that we need a help, cleaning lady, because he was regarding cobwebs as something that didn’t need to be worried about. And we are having a cleaning lady in now. And he is getting quite good at doing things. It’s just that to ask a man to do caring is quite hard sometimes, because they tend to do things in a brisk way, quite a quick way, and that can be a little bit too quick for somebody whos trying to move slowly and trying to recharge the batteries. So that can be a little bit frustrating for him, I think. So you just have to choose your moment and ask him when he’s ready to be asked, and not when he’s got his mind on something else. So that’s the thing to do, really.

Would you ever consider getting carers from the Social Services?

Well, they have talked about that and they have offered us them, but we’ve said at the moment that we think we’re coping. And my husband said he would never want anybody in to get me up in the mornings or put me to bed at night. He feels much happier doing that himself. He doesn’t want people coming into the house, really, to intrude. I don’t think he minds too much people coming during the day, when I can cope with them and see to them. But I think he’d very much resent people intruding into our bedroom and bathroom. I think that would be too intrusive, really. So at the moment he’s quite ready to care for me in order to avoid that. When it gets too difficult no doubt he will tell me that he wants some more help. But he knows it is available if we want it.

Don’t answer this if you don’t want to, but if you’re willing to talk about it, what about your physical relationship and how that’s changed? But only if you want to talk about it.

Well, medically, he’s, you know, he’s got a PEG tube, but it’s not changed things, has it? You know, it’s still just the same really. We’re just, well, obviously when he’s not well [Mike hugs Gill and gives thumbs up] – you still love me, then, yeah? [laughs] Obviously if he’s not well, you know, it does affect it, you know, and that. But generally we know how important it is. We’ve both been through marriages before and we know what, you know, so communication has always been a big thing for us, and which has been affected. So we try and make sure that we do do things and we, you know, keep together. So I can’t say that it’s not had an effect. It has. But it tends to be only when, if he’s not well, you know, if he’s not, if he’s going through a period where he’s not well. But physically, no, we’re – we’ve only been married anyway two years, haven’t we? [laughs]. We’ve been together for 22 years but we’ve only been married for two years.

But never mind. You’re still in the honeymoon period [laughs].

[Mike winks] I got a wink then, so he approves of that [laughs]. No, no, we’re very close, we are very close. And thank God really, in a lot of respects. You know, it’s – because it, spending 24 hours a day, 7 days a week with someone, I won’t tell you it’s not challenging. It is, for both of us, because it’s been a massive change to our lives. But we know what we’re facing. And we do have times, don’t we? We don’t, where we just pull apart, you know, and we just walk way from each other. And that’s the way that we deal with it. We just walk away. But we never have time, I never have time on my own really. I don’t really have much time on my own, and Mike doesn’t, you know. My day the other day working was quite, very unusual for me, to spend a day on my own working. And I managed it, I was fine, you know. It was a brilliant day, but it was peppered with all the time in the back of my mind, ‘Hows he doing?’ because he was on his own, you see. And I’m thinking, ‘What if he starts to choke? What if he–?’ Do you know what I mean? And so the conversation on the way home was, ‘I wonder whether it’s worth even risking that, you know, that he’s on his own?’ Even though he managed. I don’t know. I’d, I’d never forgive myself if something happened if I wasn’t here, do you know what I mean.

Yeah [coughs], everything’s changed in our lives. But I can pull it together just purely by pretending that it’s not there. But everything is there, and I know it’s there, and I know it’s not going to get better. But that’s the only way I can see the way of looking at it, is just that it’s happening and it’s going to happen. But it’s going to happen to me, but I mean I can, I can foresee me lasting another twenty years. But she, our relationship has changed terribly, really, you know, it’s completely changed. You know, I mean there’s no, there’s no sex. But there again, you don’t need sex as long as you’ve got somebody to cuddle. That’s the most important thing. ‘[coughs] And that upsets me.

Do you want to stop for a bit?

Yeah, it does spoil, it’s spoiled our, well, it hasn’t spoiled our relationship, it’s sort of, it’s made it difficult. You know, something that’s never been like that, and all of a sudden it is like it, and you, and for the last six years it’s kept me like it. And you just keep on going.

Has it, has it made you closer in some ways?

Oh, yes, yes, it has in, in some ways made us a lot closer, yeah. You know, as I say purely by just – as I say, you don’t have to have physical sex. You can, we can, I can cuddle her and, I do in bed and things like that, you know. And I hold her, and all this sort of thing. They’re all things that – and I try to be as physical as I can. But if your legs and your arms don’t go the ways you, the way you’re predicting them to go [laughs], it’s a bit difficult believe you me, yeah.

We’ve not needed to resort to Viagra yet. But I’m sure if we need to we’ll find a supplier. But no, you know, it’s – again, we talked about coping, didn’t we, about adjusting and finding ways of compensating. My problem’s my arms. So supporting my own weight can be an issue. But you do find ways of, of coping with all things, don’t you? No different to how you hold a knife and fork or, you know, getting yourself in and out of a car. There’s lots of different things in life that can be difficult, frustrating. As I say the, the harder ones to cope with are probably the things that you do take for granted, the everyday little things that shouldn’t be a problem. And then I find myself spitting teeth that they are a problem. But, no, we’re still able to have a healthy sex life. That’s okay.

OK.

It’s not one of those things you need to worry about just yet.

And it’s something that my husband and I miss is, [tearful] aside from sex is being able to show affection. And that’s not just to my husband – it’s to everybody.

Because you can’t hug and?

[tearful] I can’t even reach out or, and touch them or, so that physical contact is hard. And to cuddle my husband – he has to cuddle me. I can’t just stroke his back or rub his shoulders or squeeze his head. All those sort of tender loving things, I can only show it through words and my face. And that’s hard. And I’ve kind of learnt with other people now that, I just ask, and when I’m having a close moment with people and I want to feel closeness, I’ll ask them, ‘Oh, give me a kiss’ or, ‘Come and give me a cuddle. Or with my god-daughter I tell her that – she’s only 3 and she calls me – what does she say? Not poorly. Yeah, she says I’m, ‘Are you poorly?’ And I say, ‘Yeah, and that means I need extra kisses and cuddles.

Well, it, it happened very, very naturally in fact, because I went to a disabled sailors’ club, and this disabled sailors club you have disabled, who come to, to sail, and you have helpers. And my partner is a, is a helper in the club. And so I was there in the club, and so we, we met there and sympathitised and discussed and that’s how these things very naturally came on. We shared the same passion at that time in, in sailing. For me it was a discovery because I didn’t know how to sail before. But I, it was a passion coming from, from my father, who was a, a sail craft, he was building, making sails. And so that’s how we met [laughs].

Had you ever expected you’d have another relationship?

No. I, at that time after I have this situation, I’ve given up any hope in that direction. First of all because I say, ‘Well, if you are valid and you have this situation, you are now invalid – who will look at you?’ And this is one of those things which I still continue to believe, that if you are in a wheelchair you, you are zero, really, regarding this aspect. And so, well, my partner is telling me, ‘No, no, it’s not the case, it’s not true. Women are more subtle that you think,’ and I tend to believe she’s right [laughs]. I’m learning.

[omitting interviewer question]

It, it made a big difference, because first of all you meet, you meet someone who is a helper, who does it on a voluntary basis, which demonstrate quite a thoughtful, thoughtfulness as a person. And so the way I’ve discovered my partner is that I said what, what for me is, is of great value is of, of respect, is the fact that – and esteem – is that this person is taking me in my condition right now. And she has seen pictures of me when I was valid. And she has never seen me valid. But she has seen me as I am. And this is something which I value a lot, I think, and this is why I value this relationship, really. It helped me a lot [laughs].

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.

My computer also helped me pull and I think I’d better explain myself before it sounds like I’ve been trawling the internet looking for a man! From diagnosis my marriage started to disintegrate; I don’t know whether that would have happened eventually, regardless of MND but the pressure of having a terminally ill wife was not something my ex-husband wanted. He was used to me running our home and I was a very competent wife and mother. I used to work as secretary before my children were born and was organised and efficient (I still am!) The shock of diagnosis and having a new born baby and 3 year old to care for was terrible for me, especially when I started losing my motor skills. We had to rely on carers and he hated that.

He soon became verbally and physically abusive to me and as my speech began to deteriorate he started to mock me. He moved out of my bed very early on so that was the end of my sex life which I found really sad. My self-esteem hit an all time low and I felt like a freak. In August 2003 I couldn’t put up with it anymore and he left our marital home. Two days after he left I went to court and obtained a non-molestation order and that kept him away from me for a year by which time we were divorced. The crying and hurt slowly disappeared and I have peace now. I also have great sadness that the man I loved and believed loved me couldn’t support me through my illness.

So I had myself down as physically repulsive and didn’t believe any man could find me attractive again. I was wrong because in August 2005 I met a man who was able to see beyond my illness and see my personality. We have a sex life and don’t let my disabilities get in the way. He makes me feel beautiful and I don’t feel ill when I’m with him. Email helped our relationship along but he understood me well within a very short time, so it’s great being able to converse with him. I don’t know if our relationship will last but I’m happy that we met because he changed my perspective of myself with MND.

In conclusion I have to say don’t ever presume that a diagnosis of MND is the end of your life and you can’t be happy. I spent about 3 years wishing I were dead and I spend most days now being thankful that I’m not. I’m grateful for every moment with my children who are growing into kind and caring individuals. I think they have benefited from seeing MND close up and although I wish that I were able to do more for them I like to believe they haven’t suffered too much because I’m ill. Life with MND isn’t a bed of roses but it is bearable if you have the right support and a positive attitude.