Yes okay, and have you talked about what kind of care Bill would want in the months in, in the future?

About when he dies?

He’d like to die at home, preferably. And we’re sort of geared up for that. The hospice are trialling respite at home and we’re going to see how that works out for us next month. So basically they’re all geared up for, for care at home but I think really it’ll come down to, you know, when the time is right what really, what really does shape up.

Oh and that’s another thing because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn’t want to be taken to or die. I mean we hope we have it, you know, everything, you can’t anticipate too much can you? What will come down, but we hope it will be here and if not here then the hospice where he dies, yes.

So yes how does it affect your, your every day-to-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 stair lift 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 helping tasks. Being in a, not being able to be on sticks, having to have a Zimmers, then having to have a 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 light writer 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’, 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 Bill’s 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.

Have you ever felt, how did you, I suppose your emotions, how have they changed over the course of time from the beginning, what sort of, different feelings have you had?

Oh Carol I don’t think I can answer this.

Have you ever felt depressed?

Yeah.

it’s all tied up though.

it’s all tied up. I felt MND cheated me of my grief from my daughter of a process that I was, you know, was going through, that we were both going through in totally different ways individually, which was making it very hard for us as individuals together. And then MND came and has really taken over our lives so that this interlude which is MND has, I focus on that, other things are waiting there, have never gone away, are always there, will be. But MND is kind of where we are now. So there’s that. There’s, I think that’s really it, you know, there’s exhaustion if that’s an emotional thing as one just feels so jolly tired. There’s, there’s always in spite of Bill being on a ventilator, you’re always sort of on alert for something, yes.

Listening out?

Yes I think so. I think the quality of your sleep, my sleep, just, you know, you’re always sort of on alert incase.

What about going out. Go out to the shops and go out to the

Well I do, I have a mobile phone. That’s another hot tip, keep a mobile phone [laughs].

So how do you feel when Bill goes to the hospice?

Well, he’s been, well he’s been twice to the unit for respite and he’s been once on a holiday with them. They actually take ten or twelve patients to Centreparks so he’s, had that. The first time when I came back I felt terrible, I felt, this is the rest of my life, here’s this empty house and it felt awful. And I suppose that’s what I got, have to get used to really. I mean as the disease progresses you get used to doing things on your own that you would do as a couple, go to a wedding, go to somebody’s party, all of those things. it’s not easy, but, you sort of do it for both of you but, you know, you know that this is your future life. So there’s sort of that, and then you know that because he’s in a different setting physically the logistics of doing everything, the loos, the showers that are different from at home and you hope that he’s not losing, dropping down a level by things being different or easier. I mean for example we have stairs at home until we had stair lifts and it was important that he got some, he kept up his stair [laughs] going up and down a little bit when he was in the hospice and stuff. And so there’s just that element to it as well.

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, 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.

Because all these other consultants actually, the neurologist for example, there’s nothing they can do. You trail twenty miles to the hospital, you see the effort of telling all the things that’ve happened since the last visit, back you go. You kind of have a vague hope it’s a two way street, that somehow you’re contributing to some pool of knowledge, you know, that’s made it worth your while, but actually there’s nothing coming back to be honest. The respiratory people in the other hospital, it’s terrible because you don’t see the same, you don’t see the same doctor, you don’t see the consultant and I think with MND people actually it might be worth looking at something like that. You see a new doctor who isn’t familiar with the file, and you see your partner wasting all that energy, telling that same story all over again and you think what is this about?’, you know?

And you give them the eyes though, you know, that’s what I’m thinking, I’m telling you what I’m thinking, you know

Because when the consultant diagnosed Bill, said, you know, This is what He handed him a piece of paper with the MND Regional Co-ordinator’s details on and that was how we got booked into the MNDA. And, do I say her name? She was brilliant, she was absolutely brilliant, she came to visit us at home, she gave us a pack, she gave us the website, she got the paperwork sorted out for the blue badge and the DLA, she was absolutely superb and she said, We’ve got this pack we send to GPs because they are not always, you know, they wouldn’t often see a case like this maybe never, we like them to, you know, know this stuff

Of course what happened was our GP was on the point of retirement himself, and we discovered we, he, they’d divvied up his list and we were just put with somebody and weren’t very happy in our position that we hadn’t had a face-to-face because there was a list of things of course that the co-ordinator had made us think about that we wanted to ask. So we did get a face-to-face with the new doctor. Very glad actually we’re with the new doctor because he’s the young. I don’t think he has anybody else with this condition. He’s keen to learn. He hit all the buttons that the co-ordinator said you must hit. He linked with the community physio, with the hospice, with the speech and language therapist, and so suddenly we had all of these things happening. It was amazing.

it’s always surprised me, well through the MND Association we’ve come to know other people living in our locality who have, who live with MND in their, and their partners. And of course they go to different GP practices and I just wonder what sort of learning net there is between those doctors, you know, given that you’re not going to see many people in your, in your professional lifetime but maybe in the same town there are three or four people with that condition. And what sort of learning net there is, I don’t know. it’s, at that level, that’s struck me.

I think looking back the thing about the PEG, having a PEG fitted was because, this was sold to us on the basis of, You’ve got to be able to support an anaesthetic while it’s fitted and with your breathing so bad, let’s do it now rather than when you don’t have the choice, it’s a breeze kind of thing And what we didn’t realise I think then was that this is something you’ve got to maintain. You’ve got to flush it out every day. You’ve got to stop the stoma healing over.

It was fine actually. It wasn’t the, I mean there it was, it’s sort of like an alien that’s come in to live with you in a way. But it’s so commonplace now, it’s so used to it. In fact Bill was able to do it himself for some time and isn’t now and I do it and, you know, it was really no problem. He doesn’t actually take food through it. He doesn’t need it for that purpose. it’s just the other thing. And I think some of the people we’ve seen, we go to the sleep clinic at [city] and I think they were a bit surprised that we’d had it, it had been offered him so soon.