It’s changed tremendously from being just his wife’ to being his total carer now, but also best friend. Which is comfortable, but it’s not the same. I think we both miss him being able to just hold my hand. He can’t do that. He can’t cuddle me, but I can cuddle him. And I do that as often as I possibly can. Because I know he wants to, but he can’t do that. And I miss that. But that’s the difference in the role. And it’s one you learn from day-day experience’ I think it doesn’t matter what the disease is, what the illness is of the person you’re caring for – becoming a carer is just a progression.

Well, he uses a Nippy. I don’t know if youve heard of those. He was one of the first people to get them because he was on the research for them. And we both maintain that without the Nippy he would probably have died years ago anyway. Because it really is such a, an effort, an effort for him to breathe that the Nippy at night is excellent. And the alarm on the Nippy went off. The new ones don’t have this alarm, but the old ones do. Which means that the, whoever’s wearing the mask has stopped breathing or the electricity has cut off, one or the other. I immediately woke up, knew that the electricity was still on, dived round to his side of the bed. And it was horrible. I got the mask off him, turned the machine off, got rid of the noise and I just looked at him and he wasnt there. It was, he just wasnt there. Well, I shook him and I shouted at him and I, finally he came round. And he was very shocked about it as well. We both found it very difficult to talk about because it’s, it was very hard for him to realise that it was so easy to go. And he admitted later on to one of his specialists that he sees now that he, he could have just let it happen. But as I said he’s very stubborn. He wasnt going to have that happen at all. And, and he came round. Not pleasant, really not pleasant. But you spend the next few nights not sleeping, thinking it’s going to happen again. And there’s nothing you can do about that.

One of the times he did it was in the car, which was horrible because I just had to take the car off the road and find somewhere to park until I could shake him back again. And he’s more prone to do things like this when he’s anxious, when he’s upset because with MND your emotional state reflects on your physical state. Again something that he finds very hard. Being a leader of men as such, very much in charge of everything, to not be in charge of your emotions and them being in charge of your body is a very new sensation for him. He doesnt like that. He doesnt like being anxious. But he gets that way very much so.

Now, how do you think you cope now?

Probably a lot better. Because I’m no longer quite so scared of, of what might happen from week to week. So I will, I will try and make arrangements. But I have to be careful that I don’t make him anxious by making arrangements for things. For instance I want to go and visit our grandchildren soon. So Ill start talking about it. And he’s an intelligent man, but he’s slowed down, if you see what I mean, in the way that things don’t always go in first time. So I will repeat that were going to go down, until it’s in there. And then he will start checking with me when were going to be going. And if I can play it slowly, he wont get anxious, and it wont get cancelled. Because when he gets, gets anxious he gets ill. So I, I can work things out, and I can go up to about six weeks ahead. After that I don’t make appointments. There’s no point really.

So you don’t plan for the future?

No, there, there’s nothing really, I cant plan holidays, because we don’t go on holiday. I plan his respites four months in advance, because he doesnt need to know about it. He knows it’s going to happen, and I will introduce it at such a time. And he knows that is what happens. He’s not silly. He knows what I do behind his back. And I arrange things from week to week, to meet my girlfriends for a coffee, something like this. But other than that, there isnt anything we need to plan for.

Have you considered getting any paid care in?

People ask me that a lot. My friends have said to me, You, you know, you can, you could have people in. And my answer is always the same, Why should I pay somebody to give Barry a shower when I’m sat in the next room? It seems so silly. And he would hate it. And I would too, because I, I would want to be in there doing it. The other thing is that his mother had care towards the end of her life. And they would come in at a certain time in the morning to get her up and put her to bed at night. And that scares him. He said, I don’t want to have to get up at 8 oclock in the morning and go to bed at 9 oclock at night. It’s too regimented for him. And I agree with that. And I’m there. I don’t want to go anywhere, really I don’t. It’s going to prove harder when he totally loses load-bearing his own weight. Because I don’t know how were going to cope then. I know it’s going to be a case of hoists and all sorts of things. And that we both find a bit daunting. So I’m not quite sure what’s going to happen with that. But, and maybe at that point wed have to think of having paid care. But that’s because I wouldn’t be coping on my own. It would need two of us. But while I can still do it, then that’s what’s going to happen. It works. We do cope. We do very well. Were very fortunate that we lived together for two years on a mobile home, a motorhome going round Europe. You get to know each other so well that if it wasnt going to work [laugh] wed have found out then. But, no, we get on great.

Have you been in contact with any other people who have MND?

Not really, no. Ive met a few basically through, not necessarily through the MNDA, but, yes, through them. And weve seen people at the hospitals and things like this. But when Barry has been invited to go and meet people, he has put his foot down and said, No. He once many years ago went to a clinic in, in London and he saw a lot of people in wheelchairs, wearing collars, looking very unhappy. And he turned to me and said, That cant be what I’m going to be like. I don’t think I can stand it. Well, that’s exactly what he’s like now. He doesnt always wear a collar, but, yes, he’s in a wheelchair. And he cant bear it. But that’s just him. So, no, he doesnt want to meet anybody else. He doesnt want to know how anybody else is feeling. Because he’s got it every day, he says. People have invited him to go for counseling, to talk to psychiatrists or whatever. And they, and he just says nobody should have to hear what’s in his mind. It’s very dark and not necessary to share. And that’s how he feels.

When you saw those, the other people, were you with him at that time?

Yes.

What did you think?

I was in a state of denial at the time. I don’t think I found it as scary as he did. But then again I wasnt the one suffering with it.

I was going to ask you if you knew, if there was any point in time where you thought, I’m a carer. I’m actually caring now?

I think about five years ago, when he started using the Nippy and I would have to put that on him every night. And knowing that he couldnt actually lie down without using it any more. Well, actually, that’s not right. It was about three years ago when he couldnt lie down any more without it. But knowing he couldnt sleep without it any more and he needed me to do that. And he couldnt just walk into the kitchen and get the sandwich Id made for him any more. That had gone. I would say that was about five years ago.

Your experiences of the Nippy. What was that like as not the person whos using it, but as a wife and carer?

Yes. It’s strange. We were lucky in our very first one that we had. It had a good rhythm. That sounds crazy. When you listen to somebody breathe [laugh], It, and the old Nippys are quite noisy. I got used to it fairly quickly. But you do sleep at a lighter level because you’re listening for this rhythm going on. And the Nippy is breath, what’s the word I’m looking for? You can make it breathe for you a little bit more by demanding an extra breath. I don’t know how it works, but the person whos using it would understand. I mean youd sometimes hear that and think, Oh, what’s going on? But as I say I got used to that. That was no problem. It went in for a [laugh], for a…

Service?

Service. That’s the word. Went in for a service, and it’s never come back. And we were given another one, which is very noisy. It sounds like an old traction engine and it winds itself down and then it winds itself back up again. And it’s [laugh], we both wake up thinking, It’s going to stop any minute. But it doesnt. It keeps on going. And that one’s just had a little service. It’s a bit quieter. But he’s been given a brand new one now, which is very, very quiet. And we both miss the old noisy one [laugh]. But it’s strange getting used to the noise. And it’s strange getting used to the fact your partner’s having to wear this contraption. But a lot of people with sleep apnoea use these things or similar. So it’s nothing too weird. But the very fact that it’s giving him that breath that he cant get himself, were very grateful that weve got one. We both are.

Again I think Ive been very fortunate to have a good Gps surgery. I went there and had a chat, and she said, Do you understand what you’re saying to me is that, the fact that you’re really depressed? I said, Oh, well, you know, I’m just getting on with things really. But she talked me through stuff and put me on a, a mild depressant. And I got six sessions of counseling as well, which was quite informative. A bit scary in the fact that you do tend to understand things that you didnt before, and maybe you didnt want to. [laugh] That was okay. And I sort of got through that really bad time, carried on, and then slumped again. And she upped my, my antidepression tablets, but theyre, theyre still fairly mild and they are only a crutch as such. They were going to one of the other members of the group was going to take me off them. He, he said Id been on them for quite long enough. I said, Okay, that’s fine. And the other doctor said, No. Explained the situation and, and said, Just continue with them, because there’s no point in sliding back down again to try and climb back up. And I think I, I understand my depression a bit more now, that it’s really railing against things you cant change. And sometimes it’s a loss of what was, not only for him or for me, but for us because that’s the hugest thing that’s gone. But Ive come to accept you cant change things. You can only make things better as is at the moment. So that’s what I’m doing.

So the loss is your relationship?

Yes. We had, we still have a very loving relationship, but we had a very active relationship. We were very social, and very physical in all, all aspects, if you see what I mean. That, that is a loss, yes. And it’s sad. But if you think about it too much it gets too sad. So there’s no point. And you just get on with what youve got. I don’t think it helps from a woman’s point of view of going through the menopause while all this is happening [laugh]. Just adding that in, I think that added to the depression, that we were dealing with that too.

So it is your whole life.

Totally. There’s nothing else. I have my own hobbies that I can do at home, but it’s limited to always being tuned in to what he needs. And that’s how, how it always will be. Cant help it.

No. How do you feel about the future?

I used to think about it a lot. I don’t now. I really go from day to day. Because if you think about the future it’s, there’s nothing really there. If we can manage to keep on going the way were going, then that’s great. Anything else that gets thrown at us well deal with as it happens. And the fact that when he becomes more poorly, which he will do, and I know that, but I cant do anything about it until that happens. So Ive learnt not to pre-empt it. And the final solution as such, if you see what I mean, it will happen when it happens. And I, and I cant do anything about it. And I used to, as I say, think about it a lot, because I thought it was going to happen. Now I don’t. It isnt the first thing I wake up with every day, which is great. It’s much better this way.

But I think if wed have known at the time that things were going to be different than they were, wed have planned things a little bit differently. As it was we did put things in order and we did hope for the best. But I don’t think we did everything right, because we didnt know he could possibly last this length of time.

Now we live quietly. He doesnt go out. He does not like people looking at him. He cant move very much. He finds eating very difficult. And he gets very, very tired. So he doesnt like people to see him at all. He hates people looking at him in a wheelchair. So he tends to stay at home. And I dive out and back home again as is necessary. I wish we had have known that this was possible, that he could last longer. Wed have made so many different kinds of plans. And maybe he wouldn’t have been in the position he is in now of not wanting people to see him. Because he thought he was going to go downhill so quickly there was no point in making friends, because he wasnt going to be around.

And how does that affect you in terms of your daily life?

Well, my daily life runs totally around him. In a lot of ways I made my own bed and I’m having to sleep in it now. Because, that sounds a bit cruel in a way, but because we thought he was going to die and very quickly, I spent a long time thinking, Well, today’s going to be the day. Or is it going to be tomorrow? So everything today had to be for him in case he wasnt going to be there tomorrow. And when you do that for several years you suddenly realise that youve lost an awful lot of things. Not that I mind. I don’t, because I’m very happy with my husband. But it shouldnt be the way it is, because of our lack of knowledge. And that’s a shame. We don’t socialise. I do. I have good friends who have taken me under their wing and said, Come on, at least once a week out for coffee. Once a month, girls night out, which is just literally going to the pub across the road. But that’s fine. We, we have a good old chinwag. And that’s my release, which is great. And I’m very, very grateful to them. But he never goes anywhere and I feel so sorry for him.

The one thing Ive learnt to do, through a little bit of counseling I must admit, because I did get depressed at one point, was Ive stopped feeling guilty about going out for those coffees. I used to even feel guilty if I went out for a walk, because he can no longer do it. But I feel wrong that I should go out and do it. But I wont say I’m totally over that, but I’m a lot better than I used to be. And I now don’t think he’s going to die every day, which is really, it sounds silly but it’s a help because it was very depressing thinking that every day.