Motor Neurone Disease (MND)

My wife's case has gone very slowly, thank goodness. The throat development, she lost her voice. And then the next thing that happened was she slowly but surely lost the ability to swallow food, solids. And then it became obvious that we had to find an alternative method to feed, and our specialist said that we would have to have a PEG installed with my wife so she could take on liquids. So that was organised. And again a very efficient set-up in the [other city] hospital, and we remained there with all these activities. And they've been wonderful. I can't speak highly enough. Obviously they're set up and capable of assisting people with our problem. 

So my wife was then, had a PEG installed and she lost her ability to take in food via the mouth. And the next problem that developed was saliva, she couldn't swallow saliva. So we've had that problem that we've had to get over or around, or manage. 

One of the things that the specialist informed us with this particular disease is that as long as my wife is kept healthy and strong then she can expect a reasonable length of time that she will manage to deal with this problem. But if she drops her weight or her strength, then this aspect of it will lead to other problems that will obviously cause us very serious problems.

For instance we've had to have the PEG installed, she's just yesterday come from being into the hospital to have it replaced for the fourth time. And this is probably a nearly unheard of amount of times. The first three times it was done in [the city hospital]. And the staff that have been dealing with this problem have said they've never come across this particular failure in the tube. It's a tube that has been giving trouble and has failed, and they've sent it to the laboratories. They can't find out why the tube has failed and why it has perished. So we've had to have it replaced again, for the fourth time, but we don't know how long that... So I mean all these problems are things that we have to deal with and overcome. I mean, they are very worrying because obviously my wife's life depends on the amount of liquids that she's able to take in through this method. Again getting the liquids and the types, they have flavours and things, but again this is another problem which is personal to my wife in that she likes some of the flavours and she doesn't, and all this procedure of going to the doctor's to get syringes, replacement syringes, it's all a considerable problem, but it has to be overcome. 

Footnote' Various types of PEG tube are used; some last longer than others.
 

Have you been happy with how the, the PEG has turned out?

Oh, it's been very good, hasn't it? We've had - Ken went and had it done in June, didn't you? Sort of backtracking here. It was just, we took him in in the morning. At that stage Ken was still quite, could walk, couldn't you? Took him in in the morning. And they were going to give him a local anaesthetic to do it. And then went back about half past 5, me and my son went to pick him up. And I've got to say I didn't think it was handled very well at all.

Because it was in a ward that closes, you know, a day thing, I felt like - because Ken was about the last person to leave - the nurse just came along, thrust a leaflet in my hand, said, 'Don't use it' - was it till so many hours or something? I said, 'But nobody's shown me what to do yet.' The dietitian wasn't coming till the next morning. And so she said, 'Oh, that's all right. You just read the leaflets. Off you go.' And that was it. Well, Ken could hardly walk. He was like doubled up, weren't you? And there was a wheelchair sitting in the corridor, which I wanted to use, but Ken being strong-willed said, 'No.' So he managed to crawl - luckily we were parked outside [laughs] - crawl to the car. How we got him in and out of it I do not know. Managed to get you upstairs to bed. I think you went, went asleep, didn't you? Our son went out for a few hours in the evening. When Ken woke up, he was in so much pain. He - well, it was awful. It's the worst experience of my life - didn't you? Oh, I just didn't know what to do. I really was, you know. So I phoned the doctor. Of course now it's out of hours, isn't it, which you have to explain to some woman on the end of the phone the problem. She then has to transfer it to a doctor, who then decides whether they're going to come out or not. Well, of course by now, hours - did I give you? Oh, that's it, they said to give Ken painkillers. Well, of course he can't swallow very well at this stage. I don't know if I did manage to get something down you. I don't know, I can't remember now. In the meanwhile our son comes home. I didn't know whether to phone an ambulance - because Ken was, well, it was awful. He was crying, I was crying. Eventually they phoned back and said a doctor would come. I think from phoning to when a doctor came must have been about three hours. And then two of them turned up. They came up, examined Ken. I think at some stage we had got hold of some painkillers from somewhere, hadn't we? Which I don't know if you'd taken and then they'd calmed you down a bit, but then obviously they wore off. And in the end they gave Ken an injection in his leg, which worked pretty quick, didn't it? And then Ken went asleep. But I must admit I feel that Ken should have stayed in hospital overnight. When the dietitian came the next day, which again was a very nice lady, and she said all the hospitals that she'd worked in, they do keep you in overnight. She said, 'I was really surprised that they'd sent Ken home.' And it's normal to get all this pain, because it disturbs all the stomach and they have to push the tube out, not in. And you was really, you didn't have anything... And then she showed me how to do the feed, didn't she? And you was really poorly for a week, wasn't you? It took Ken a good week to get over it.
 

Next day I was invited in for some training on how to operate the PEG. I'd been given no information, actually, about what we were going to have to do to manage it, once it was there. Anyway I went in that morning, and I was given I think ten minutes to be shown how it worked. And a nurse who spoke very little English came to show me, and she put a syringe of, of, of water through the PEG with such speed, and I think for a daughter to suddenly see a mother being fed through a tube in the stomach with such aggressiveness, I mean that bit in itself is difficult. But the kind of just callousness of it all, just shocked me beyond belief. And I remember walking out of that hospital and phoning my sister in floods of tears saying to her, 'We have to manage this every day. Mum's not going to be able to do this for herself, you know, no-one has told me that we're going to have to flush this thing through every single day now.' And I was just, blown away by that, really'The other'

You didn't get any other training after that,

No.

That was it?

No, that was it. Yeah.

You didn't get any written information on it?

No, I had got hold of a booklet which has information, really, that's good for people who know how to use it, but actually not helpful for somebody who's just picking up on it. It doesn't have any pictures, and actually pictures of course are the easiest thing to follow if one's uncertain. I felt that really they needed somebody like me to write it for them, because they're never going to know what it's like to learn to do it, or what you have to overcome psychologically in order to get round to using it. And I think that's quite difficult. And I think also that there are questions that you have like, 'Well, where do you get the equipment?' and you know, 'How often do you throw away a syringe?', and you know, 'Is it safe just to keep it open in the bathroom?' or you know, 'Could I poison my mother?', or - you know, these questions which may seem really silly or elementary are the things that one really worries about. It's like having a new piece of machinery which actually is going to be crucial to your very existence and you don't know how to turn it on [laughs]. It gives you a huge amount of fear. And I worried enormously about that.

You said that psychologically you had to ', 

Mm.

Can you tell me a bit about that?

Yeah, I think the role of your mother in your life is to kind of nurture you and feed you, and that kind of intimacy is one that's mother to daughter, and suddenly there's a switch which is untimely. It's not as if your mother had lost her faculty or anything like that where your mother's life depends upon your care. And that not just that you're not actually putting food in her mouth, it's through a hole in her stomach and for me the kind of connection between the umbilical cord and the PEG tube, you know, it's there, and that seemed like a very difficult line to cross. I think my mother also had an immense amount of dignity and suddenly I was playing a physical role. And I think again that's quite a tricky line to cross, no matter how close your relationship is. You know, I think there are some things that one wishes, one hopes to keep separate, and that wasn't going to be possible. And I think also for her, again there was this business of, 'I'm not going to be able to manage this myself for long.' So it was having to contemplate again the business of failing.
 

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 couldn't actually lie down without using it any more. Well, actually, that's not right. It was about three years ago when he couldn't lie down any more without it. But knowing he couldn't sleep without it any more and he needed me to do that. And he couldn't just walk into the kitchen and get the sandwich I'd 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 who's 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 who's using it would understand. I mean you'd 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 doesn't. 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 can't get himself, we're very grateful that we've got one. We both are.