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Harry - Interview 43

Age at interview: 73
Brief Outline: Harry's wife was diagnosed with bulbar onset MND two and a half years ago. She is now unable to speak. She finds swallowing very difficult, and has a PEG fitted.
Background: Harry is retired, married with 3 adult children. Ethnic background/nationality' White British.

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Harry's wife began finding it difficult to speak nearly three years ago (2004). She had tests at their local hospital, and it was suggested it might be motor neurone disease, but there was no definite diagnosis. Their daughter knew someone who worked in a specialist MND clinic and they were referred there. The neurologist there told them it was MND. Although it was a shock, they were relieved to have a definite diagnosis and to be able to start getting specialist help in place. They have been very pleased with the services provided by the specialist clinic, but it is a long way from their home and they are thinking they may need to get more local support.

Harry's wife is now unable to speak, and uses a combination of signs and writing on a small white board to communicate. She has a lightwriter but finds it frustratingly slow. 

Her symptoms have progressed fairly slowly. She began to have difficulties swallowing and has a PEG fitted. The PEG has been replaced several times because the tube has perished. The hospital staff have tried to investigate why this keeps happening but have not been able to find an answer. 

More recently, Harry has been worried that his wife's symptoms seem to be progressing more rapidly. Increasingly she finds it hard to keep her eyelids open and sometimes has to hold them open to see. She has had a couple of falls in the last few months, and he thinks perhaps her mobility is starting to be affected. He had previously believed it would not affect her arms and legs but now realises this can happen. She now has an emergency alarm to carry with her. Gardening has become more of a problem as she loses strength. She also gets very tearful and distressed, partly because of the difficulty of trying to communicate. 

Harry has been looking after his wife's business, and because he wants to be there to look after his wife as much as he can, he has put most of his own interests on hold. He feels sad that she can no longer enjoy things like sharing a meal together. Dealing with the uncertainty of what will happen in the future is very hard. He worries about how he will look after his wife as her illness progresses.  He finds it difficult to talk to professionals about his worries and feelings, but feels lucky that he has a very supportive family. 

 
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He's been running his wife's business but now she needs more care he has to decide if he can keep...

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I've had to discuss with her that, because of the falling down and the situation which it's difficult for her to get herself up, that we have to be very careful on where she goes and what she does. And this in turn affects me dramatically because I am still working in what is my wife's business, which is a reclamation business. It's our main income, and obviously we need this income as much as we need to maintain the business. And so I have to leave my wife. And this is now becoming a very serious problem because my wife is obviously entering the stage where it seems that she will have to soon have someone call or with her at all times. And I have to make the decision whether it's to be me or someone else.

Do we sell the business off? I don't want to sell it off. I mean, from my point of view my life has been active, extremely active. I've been self-employed and I've been active in the construction trade' Hence my wife's reclamation yard, which she's built up off the offshoots and the benefits of the trade that I was in. I've had to hand it all over to my son, and he's dealing with that aspect. But my particular concern is obviously looking after my wife's business at the moment. And what I do for the future and how I get round this in relation to my wife's problem, I just do not know. It is one hell of a big problem for me personally at the moment.

I've always been very active business-wise. 'I thrive on getting myself into trouble and the excitement of getting out of it, being quite frank. And I've always been that way.

 

His wife was advised to have a PEG. They were very happy with the care. However, the tube had to...

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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.
 

 
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He asked a local mobility showroom if they had a kneeler for his wife to work in the garden. They...

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Everything we've done we've managed ourselves. As I said, my wife is very independent in that way. So every time I suggest anything, she says, 'No, we'll manage without.' I don't think you should do. I mean for instance we've got this mobility showroom over the road. Actually we're lucky, I can just walk over there and ask them. I had this problem with my wife gardening, with her kneeling down and everything. I went over and I said, 'Well, I know there's a kneeling stool or something. Perhaps they may have one.' So I walked over there. They said, 'No, we haven't. We've got a catalogue here. I'll look it up and see.' And lo and behold he said, 'Well, the garden centres would sell what you need.' And so off I trundled to the garden centre. So I mean that's a little help in that that problem was solved that way. And so I'm grateful that we've got that close by.

 

His wife is sometimes sad that she can't eat what everyone else is eating. He feels guilty that...

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Because my wife suddenly breaks down and says, 'Oh.' I mean for instance, my daughter and I had a curry. And it sounds stupid this, doesn't it? I had a curry, and very enjoyable, obviously. Suddenly my wife, in the kitchen, suddenly broke down in tears, and I had to go out and find out what was wrong. And after quite a long time it took to find out that she just said, 'I wish I could partake of the curry.' So that makes me feel pretty awful to think that I can enjoy a curry and my daughter can enjoy a curry, which is just normal, and my wife is not able to. So I suggested to her that she should try some of the liquids from the curry and everything. She tried, but then she informed me that it was a bit too hot, and the Madras curry or something was too hot and it was burning her throat and that. So again we tried to get round the problem a little bit, but it doesn't work. So, you know, what can you do? How do you approach it?
 

 
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The uncertainty of how his wife's condition will progress causes him great anxiety.

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It's like a colossal cloud suddenly descends on you, and you have to find your way round, through, or under or over it. And the problems will come out of whatever it offers. It could be anything - well, I don't know, fifty things, really, problems that could crop up. Trying to foresee them is not an easy thing. It's no good, you can't foresee. I mean you think a bit about problems, if you're having to deal with someone that needs attention all the time' And as these things appear you can start to think about them. But in my case I want to put them to the back of my mind sometimes because I don't want to face them. I have to. But it's desperate when someone who you've lived with and loved and known, well, for the length of time that we've been together, to see them fading away. It's terrible. And not to be able to do anything.

It's something that you never imagine' When I was told, I said, 'Well, what is it?' I thought about it, and I thought, 'Well, I don't know anything about it.' You know, they gave me pamphlets and I started to read them. Well, I mean this gave me the biggest shock I could ever have in the presentation of that problem. And it's proved ever since then that it's a shocker, it really is. If it ran along normal rails, or if there were rails that you'd say, 'Well, it works in between this, that and the other' - if I knew, you could get some help and assistance, but it just doesn't seem to.

And that's the terrible thing. That to me is the worst thing of the lot. Not knowing. I've always been a person who can cater with things I know, good or bad, I can cater with that. I can adapt or I can get round or I can get under. Any adversity or anything like that, I'll fight and that's fine. But not knowing is something that's never come across in my life, now I think about it, you know. It's not knowing, and not knowing where to turn.

 
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When his wife gets tired she finds it hard to keep her eyelids open and sometimes holds them open...

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There are various symptoms that my wife has developed. For instance she has lost control of her eyelids, and the muscles in her eyelids have now started to fail. And that means that she is having great difficulty in keeping her eyelids open. So this is another very serious problem, because obviously she can't control her eyes. This happens particularly when she's tired, so obviously we have to make sure that she doesn't get too tired. And she has to hold her eyelids open with her hands at times so as she can see. So this is a very distressing situation and causes us, or causes her - well, does cause me obviously, but causes her great concern.

 

Sometimes he gets impatient waiting for his wife to say something with her Lightwriter, which he...

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For instance my wife has, I don't know what you call it, a typewriter.

Lightwriter?

Yes. So she can convert typing to speech as it were, which she does over the phone with my family. But again, it takes a long time and that's very frustrating. And in fact I have a failing in that department. When I ask my wife for a particular answer to anything, of course it's bound to take time to respond, either from writing, or even to think about it and that. And of course at times I get a bit impatient and say, 'Well, can I have an answer' or something, which is wrong. I shouldn't do. I should just let her take her time and that. So again it's a problem. And it's something I have to get used to and overcome. And I'm afraid at times it's difficult, because the business and other problems are all on my shoulders, as it were, that I do get a little bit short-tempered at times, thinking, 'Oh, Lord.' But there we are. That's another small problem.
 

 

He doesn't feel he can ever have time off from being a carer, and his wife relies on him for...

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Yes, it's, I don't think I can ever have time away from being a carer, because I'm thinking about it all the time and wondering whether I should - I mean, for instance I have to ring up the doctor for all the medication and everything. Everything that my wife wants has to come through me because I have to use the phone and speak to the people. So all the appointments I have to make. So I'm virtually her secretary in that way, or her lifeline in communication. So that is a very important aspect of what I have to do, what I'm needed to do, to keep things ticking over. So what can I say? I haven't time for leisure in the sense of leisure. And if I was away I would only term it leisure if I could take my wife. And I can't risk going, spending the time away. I'm away already looking after this business, and then going home saying, 'Well, I'm off to play badminton tonight' or whatever it is, 'Squash or whatever it is tonight' or anything, I couldn't do that. I just couldn't, it wouldn't seem right.

Again there are certain aspects of my life that I'm not able to partake of because I don't feel under the circumstances that they'd be right. I don't think they would help my wife's situation. I get very worried when I have a decent meal, because I know my wife can't enjoy that sort of side of life that is normal. And I feel I'm doing something that I shouldn't be doing.
 

 
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It is too frightening for him to talk to his wife about what will happen to her in future. His...

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I find that I can't work on two levels. I can't suddenly switch and say, 'Well, I'm doom and gloom now for the next hour' and then suddenly change and go up on to a different level. And that's a hell of a problem for me personally. Luckily my daughter has stepped in there.

She's been to the meetings and can talk with [the specialist nurse] on a very friendly basis. And in fact she got all sorts of information that I wasn't aware of, of the desperate sides of this disease that I wasn't aware of. 

I realised that she was enquiring about items that I don't really want to know about, although I've got to know about. But she's sort of taken up that role. So I'm very grateful that, and I had a definite discussion with her on the last time she was down, which was about a fortnight or so ago, about this aspect and I said, 'Look, I'm finding it very difficult to talk about certain aspects.' And she said, 'Well, would you like me to deal with that side?' And she offered to do it. So I have sort of offloaded my responsibilities, if they are my responsibilities, on those sides a little bit. And my daughter has taken them up and is prepared to discuss. Because I think my wife has already asked her to say, 'Look, if I am getting in a downward slide or state, then I would like to know.' And she will be able to communicate probably on a little bit easier basis with my daughter than with me. 

I don't know whether that makes sense or not, but that's the way it has developed. And I'm very grateful because I find death and all that entails very difficult to manage. And, those aspects and the serious side of what may happen with my wife if she becomes incapable of moving, losing use of her limbs as well, and all that aspect. I find that desperately frightening and worrying. I may have to face it, and well, I will do when it comes. But to discuss it before it happens is something very hard for me.

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