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Ann & Barry - Interview 48

Age at interview: 54
Brief Outline: Ann's husband Barry was diagnosed with MND about 10 years ago (1997) at the age of 49, after two years of symptoms and tests. (Since identified as primary lateral sclerosis - PLS).
Background: Ann is a retired hospital administration clerk, married with 2 adult sons. Ethnic background/nationality: White British.

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Ann first noticed something was wrong with Barry around twelve years ago (in 1995) when she saw his muscles twitching after he'd been swimming on holiday. At first they dismissed it, but then he went to his doctor. (He was in the army at the time). The doctor thought it might be arthritis and referred him to a rheumatologist. After nearly 2 years of investigations ruling out other conditions, they decided it was MND. By this time Barry was starting to lose his balance when walking and had a lot of falls. 

Although they have since been told he has PLS (primary lateral sclerosis), at the time of the diagnosis they were told to go home and put their affairs in order, as Barry was not expected to live long. They moved to a small bungalow, thinking Ann would soon be on her own. They also moved to a new area. Looking back this was the wrong decision, and if they had known then that Barry would still be alive ten years later they would have made different plans and decisions. Thinking that Barry would die soon, they withdrew into the home and Ann feels she put her own life on hold to make the most of her time left with him. She became quite depressed wondering how long he had left, until it became clearer that his progression was very slow. She continues to take mild antidepressants. Their social life is limited, but Ann manages to get out with friends every now and again. 

Barry doesn't like people to see him using a wheelchair when he used to be so fit and strong, so he tends to stay at home. He does not like to feel weak and dependent, and becomes quite anxious about going out. He uses a Nippy ventilator (non-invasive ventilation)‚Äč at night, which they believe has been crucial in keeping him going. Three times he has stopped breathing, once at night time, and the Nippy (non-invasive ventilation) alarm alerted Ann. She shook him till he came round, but it was a frightening experience. 

Barry's speech has not been affected by his condition. Because his arms and legs are now very weak, Ann has to provide a lot of practical caring support. Three weeks in the year they have respite care from their local hospice. Barry would rather be at home, but he knows she needs a rest and the care is very good. Ann still goes to visit him every day when he is there but it gives her a chance to catch up with things that need doing in the house or garden.

Realising she has become a carer has been difficult. Barry misses being able to hold her hand and cuddle her, though she makes sure she cuddles him as often as possible. Neither of them wants to have paid carers in to help and would rather manage at home on their own, and they have not been closely involved with any support groups. They feel they have good support from their GP and neurologist when they need it. They take each day as it comes, and Ann has stopped worrying about the future as much as she used to.       

 

Everything turned on their belief that Barry did not have long to live, not knowing he had PLS....

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But I think if we'd have known at the time that things were going to be different than they were, we'd 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 didn't know he could possibly last this length of time.

Now we live quietly. He doesn't go out. He does not like people looking at him. He can't move very much. He finds eating very difficult. And he gets very, very tired. So he doesn't 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. We'd 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 wasn't 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 wasn't going to be there tomorrow. And when you do that for several years you suddenly realise that you've lost an awful lot of things. Not that I mind. I don't, because I'm very happy with my husband. But it shouldn't 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 I've learnt to do, through a little bit of counseling I must admit, because I did get depressed at one point, was I've 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 won't 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.

 

She wants to care for her husband herself as long as she can. He does not want carers' working...

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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 o'clock in the morning and go to bed at 9 o'clock 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 we're 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 we'd 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. We're 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 wasn't going to work [laugh] we'd have found out then. But, no, we get on great.

 

Barry found it upsetting to meet others with MND and does not want to share how he feels. Ann...

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

Not really, no. I've met a few basically through, not necessarily through the MNDA, but, yes, through them. And we've 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 can't 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 doesn't always wear a collar, but, yes, he's in a wheelchair. And he can't bear it. But that's just him. So, no, he doesn't want to meet anybody else. He doesn't 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 wasn't the one suffering with it.

 

She felt she had become a carer when her husband needed to use ventilation every night. It was...

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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.

 

She has been depressed about the loss of their future as a couple. She takes an antidepressant,...

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Again I think I've been very fortunate to have a good GP's 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 didn't before, and maybe you didn't 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 they're, they're 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 I'd 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 can't 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 I've come to accept you can't 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 you've 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. Can't 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 we're going, then that's great. Anything else that gets thrown at us we'll deal with as it happens. And the fact that when he becomes more poorly, which he will do, and I know that, but I can't do anything about it until that happens. So I've 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 can't 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 isn't the first thing I wake up with every day, which is great. It's much better this way.

 
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It is sad to have changed from being just a wife to being a carer. She misses him being able to...

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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-to-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.

 

Her husband uses a ventilator. She describes two frightening occasions when he briefly stopped...

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Well, he uses a Nippy. I don't know if you've 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 wasn't there. It was, he just wasn't 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 wasn't 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 doesn't like that. He doesn't like being anxious. But he gets that way very much so.

 

Her husband's thinking has slowed down. He gets anxious and stressed when they try to plan...

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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 I'll 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 we're going to go down, until it's in there. And then he will start checking with me when we're going to be going. And if I can play it slowly, he won't get anxious, and it won't 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 can't plan holidays, because we don't go on holiday. I plan his respites four months in advance, because he doesn't 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 isn't anything we need to plan for.

 

It helps her to have hospice respite care for her husband. The care is excellent but he'd...

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And also our GP has put us in contact with our local hospice, who, and I now get respite. I've been getting it for the last two years. Which has been very good. I get three separate weeks during the year, and then Barry goes in there for a week. And she got that set up for us. And they've been very, very good, very helpful. And again it's, it's so good being able to rely on somebody outside because we don't have any family round here. And sometimes you need to lean. Very difficult. And when the professionals actually let you do that, it's excellent. So build up a relationship. It's important. You're going to need people.

The respite care, what's been your husband's experiences of that?

Wonderful. He doesn't like it, and he doesn't like going there. But when he's there, he gets the best of care possible. He actually enjoys the interaction with other people because his normal interaction is totally just with me. And I keep saying to him, 'Are you not bored with me?' And, and he says, 'No.' But he must be. So he goes in there. And he's a charming man and everybody comes in and talks to him. And it's great for him. He's very happy to come home, but he can't fault it in any single way. The girls are great with him. All the nurses, the doctors there are super. And they'll spend maybe only five minutes a day with him or maybe half an hour, whatever. But he gets not a kick out of it. He, he, he'll never say he enjoys it, but he doesn't hate it. Let's put it that way [laugh]. And he doesn't ever say, 'I won't go in. I don't want to go.' He, he manages. And they think he's great, because he doesn't complain. And he's very good that way. He'll eat anything that's put in front of him. And if the buzzer goes, there's somebody else needs the girls, he sends them on their way. And he always, says, you know, 'I won't come in if somebody else needs the bed.' But he also knows I need a rest.

And how, is it far? How far do you have to go?

It's only two or three miles away which is a good job really, because even though I do get the rest, I still go in every day. 

Do you?

Yes, I can't help it. I'll maybe not go in one day, where I might go and visit my brother in the north of England or I might go and visit one of our sons. But I'm back the next day [laugh]. But I don't have to think about the cooking and I don't have to spend all day with one ear listening to what might be needed. And that's, that means I get some sleep. I mean don't get me wrong, I do sleep. But it's like having a new baby in the house. You are tuned in. And if anything, a cough, a touch, no sound at all, which is even worse, you wake up, you, or you go into the other room, whatever. You're just focusing on it. So it's, and that's 24 hours a day. So when he's in the hospice I know the girls are looking after him. Because they will phone me if they need anything or they think I ought to know anything that's going on. And I can relax a little bit and, and recharge the batteries. And get the kitchen done and do the garden and this kind of thing.

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