We were saying about my wife and saying how it’s very hard, and I’m finding it very hard to think that she’ll be on her own for years, 20, 30 years. But the other thing is that it’s very hard now. She gets absolutely exhausted. She’s my carer day and night. If I wake in the night, she’s the person who has to get up and get me a bottle so I can go to the lavatory and this sort of thing. If she wants to go to bed early, she feels guilty about sort of staying. Because I’ve possibly slept in bed during the morning. Because one of the things about being in a wheelchair is that you get uncomfortable if you’re in there eighteen hours a day. So if I have to get up fairly early in the morning, I tend to bed slightly earlier. If I know I’m going to be up late, I tend to go to bed slightly later. She’s always up, she’s always running around, she’s got to feed me, she’s got to wash me, dress me. She hardly has any time for herself.

And so we continued to have a reasonable quality of life, moving with the aid of the wheelchair, with the hoists, with personal lifting, right through until the time Olivia died. But to do that, my wife and I had to break all the rules. We had to lift her on all occasions. So there was no way that we could use the mechanical lifts to get her in and out of the car, to get her to a hydro pool. We had all the OTs and physios coming out of our ears and none of them could come up with a solution other than my wife and I lifting my daughter. I’m sixty-two, my wife is ten years younger, but in any of those cases I mean, I’ve got the strength and she hasn’t, so I was finding it was quite – I suppose in a sense it was amusing – but also frustrating that we’d have a very able bodied helper coming in to assist, you know, the Social Services helper coming in to assist. But when Olivia needed to be moved from her bed to the wheelchair I had to come and lift her. Because we couldn’t, the hoist wouldn’t get in. We had one of these mechanical ones as well as the fixed one, and we couldn’t actually get it alongside her bed to actually get her from the bed into the wheelchair. So whenever we were doing any lifts at all my wife and I would do it. We became quite proficient at it, but our backs did suffer a little bit, but they’ve recovered now. And to any parent I would suggest that for quality of life you’ve got to look at ways that you can do that.

Ann’That’s why I really think that, well, for us and, you know, for the way we’ve, we’ve treated this, you just have to get on with it in your own way. [Peter’Yes]. There is no right or wrong way. It’s what’s right for you. And people, you know, might say, ‘Well, I wouldn’t do it that way. But you have to do it your way. I think that’s what’s important.

Ann’And also, well, from my point of view, Peter’s very understanding when I want to do things. We always did our own thing prior to his illness, that we, you know, we had our own interests and – or our own careers or – and we, and I, he’s not resentful of me doing things that I normally did, even when we, he can’t do the same things. So I think that’s – but I don’t think he is [both laugh]. You know, so he’s fine to let me do my thing as well. And I think that’s really important. Otherwise you could feel very very resentful. So that’s really important.

So yes how does it affect your, your every day-day life?

‘I think it’s, it’s crept up, bit by bit, you know as you add on more and more tasks that you do. Things that Bill could do last month are suddenly, I find I’m doing. I can’t quite recall the break from him being able to dress himself and completely wash himself, to that not being possible, to my needing to be in attendance most of the time when he’s moving around, especially if he’s using the stairlift because there’s a transfer at a landing across to another one. I can’t quite remember, but I do remember feeling sometimes [name], my daughter and I, we catch ourselves talking as though he isn’t here. And I think that’s a sort of way of being prepared for him not being here. It’s, it’s sort of reflects that all of these little steps are mini-bereavements if you like. As you do more and more things, you know, cutting up food, all of the, all of the helping tasks. Being in a, not being able to be on sticks, having to have Zimmers, then having to have wheelchairs. Assessments for yet more wheelchairs and you see the role developing and you feel the conversations are all about the little nuances of, of things. Bill has a Lightwriter now which he’s meant to be practising and using. You can pre-programme it with sort of frequently used phrases which might be ‘bring me a Fortisip [drink]’, or [laughs] ‘oh God’ or ‘bugger off come to mind you know? [Laughs] but it’s all that sort of, little detail, and when people come, when friends come by or we have a meal with friends and then we sort of feel normal again, you know and the conversation isn’t all got this undertone of MND and stuff, I think it raises Bills game. And people say, ‘Oh isn’t he great?’ You know, ‘He’s himself inside this sort of carcass that’s packing up on him. Which he is, but it also comes at a price because alone together there’s the frustration and there’s the, you know, all the difficulties and all the emotional stuff too and that’s not, that’s not easy. Yes.

How do you think, how do you find a way to cope with that?

I think I kind of, I think, I don’t think looking back on my life that I’ve been a very good caring person in terms of I don’t mean as a parent but as, say with elderly relatives in my family where I’ve had that opportunity to be more caring. And now, you know I have to be, I have to step up and do this thing which I never imagined I’d do but I, think you get the resources to deal with what life chucks at you because life can be shit basically, and I think somehow you do cope, well you do. And what did you ask?

How you cope with the emotional side of it?

Oh yes, by really just practically, just doing the job, and, it amazes me really the sort of things you get used to doing that don’t offend you or are no difficulty. It’s not just because he’s somebody you’ve lived with for thirty something years and, you know, you’ve had all that love, and all those memories and all those experiences together. It’s just that on another level here’s a practical task to be done and the doing that, has to be the way you express the love or the other emotional side because really, it’s quite a delicate line between, falling down a big hole, by expressing the emotion and then just, you know, [noise] being useless and actually doing the job, you know, and keeping the show on the road a bit, your show and, and Bills show too.

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.

Our local hospice have been fantastic. They know our home situation, they hold the link between so many players and I think, you know, someone in a position to do that is brilliant. They’ve always been able to help and advise with sort of practical things that can enhance life. And I think when Bill started going there for respite, once a week, he goes to day care once a week, to have, we just thought, ‘Oh, you know, that gives us a break from each other. But it was the medical expertise, the observation of the physio throughout a day not just on a half hour visit that was absolutely astounding in the support it gave. The MND Association has been fantastic, the befriender I have, I mean we actually like each other so apart from her role that has been amazing. The hospice ran a carers course and on that I met two other women whose partners, whose husbands had MND and we’ve sort of stayed in touch, two of us have stayed in touch and that sort of support was quite good. I think on the course, you know, you get the feeling that everybody’s in an ideal relationship, their circumstances are fine, you know, and they’re just doing this carers thing on top. And of course life isn’t like that and through my befriender I know, you know, you have a, a whole lot of emotional issues to deal with. You know, your relationship may not be at the highest point it’s ever been. You may have feelings that make you feel quite humble because you don’t like the feelings that you’re having. But, we’re only people and people do have those feelings and other people have those feelings, and I think that has been helpful too.

Can you tell me a little bit about those feelings?

Well sometimes, this sounds awful, sometimes you wish it was all over you know? And that’s terrible. I don’t wish Bill to have MND. I don’t wish him to be dead. But, you feel, and, my befriender has said, you know, the sense of relief when actually it finished, and then the guilt that she felt because of the relief that she felt. And you can sort of in all these mini-bereavements I spoke about before as things are gradually deteriorating, sense that feeling at the end, you know, that finally you know there isn’t this thing. It’s a bit surreal because you can’t actually imagine this person not, not being there but, you know, and you don’t feel proud of feeling that feeling that I have to rebuild my life.

You’re able to look, you’re able to look forward now to the end and beyond, you’re are able to do that?

Sometimes yes, yes. I think the, some of the time there are just days and we just deal with the day as it comes. It’s very difficult to plan anything for example so that’s why I say we just deal with days. It may be someone’s coming at the weekend but it may be Bill isn’t up to it actually and we have to say sorry, and of course they understand all that and that’s fine, or longer term plan, like going into respite because I have something that I’m going to do or want to do or something like that. Well, you can sort of plan for that but you always know, nearer the event things may change because the circumstances have changed.

What I need to say was that friends. We couldn’t have done it without the help of friends. They were amazing utterly, utterly amazing. Fortunately I’m in my fifties, Di was nine years older than me. She was sixty, sixty four. So we had quite a lot of friends who were retired, who could come over. And friends who made time who were working but made time, made lots of time for us. And just people in the local community you know, people offered their help everywhere you know, practical help. Some insisted on, on financial help as well. Some were very generous in all sorts of ways. You know people we hardly knew, people we’d just met in the street and said hello to but we hardly knew just rallied round.

Two people when we were over in the flat and didn’t have a washing machine people organised themselves into rotas to do our washing for us. It was just amazing. It changed the way that I thought about people, you know. And Di’s big thing was always about community and I began to understand things through her eyes over a matter of time. It just has completely changed the way I see the world.

You know, we’re rushing around all so competitive and sort of all having to meet our own individual economic needs. And then people were just abandoning their own interests and just rallying around all everywhere. It was just amazing.

You know, I’m not a religious man but I think I got strength from somewhere. I really do, it was, I don’t know. I mean, if it, if you knew my wife, it wasn’t really a problem because she was always cheerful, you know, she never moaned about her illness and, and you know, sort of people say, ‘Well why you Luise?’ And she would say, ‘Well why not me?’ You know, ‘I’ve drawn a short straw and that’s it really.

So I mean I was just focused, I knew what I had to do. You know, we’d get up at certain times, well, obviously the first thing I had to do was take Luise to the toilet. Yeah, I just coped really. Probably about six months after Luise was diagnosed in March of 2005, I had reached retirement age, I retired about a month earlier. But, two weeks after my retirement I broke my Achilles tendon, so I was hobbling around in plaster for seven and a half weeks. So that was an added hazard really.

And while all this was going on of course I couldn’t do the garden. My son who lives nearby in [town] used to come over and do my garden over the weekend. My other son who was living at home was the joker of the family really. He kept his mother amused and even when I had to nip out and get some shopping or something like that and she needed to go to the toilet, he’d take her to the toilet. Lift her up and put her into the wheelchair if she was in bed and, you know, whip her into the wet room. Sort of looked like that and, did the business really. Which was, wonderful to see really because mother and son I mean, it’s a difficult situation really doing the hygiene of a, of your mother. But he somehow managed that and, yes so really we had, we had a great team.

And when I’d busted my leg up, Luise was involved with a local Catholic church, and all the parishioners would come round, knock on our door and we’d say, ‘Whos that?’ And there would be a shepherd’s pie for four people, [Laughs], you know, amazing really and, people used to come round to visit and yeah so [sighs], it was tough but it wasn’t all misery and dismal, really.