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Dave

Age at interview: 73
Brief Outline: Dave’s wife was diagnosed with relapsing-remitting MS in the early 1980s, having experienced symptoms for some time before then. She now is in the secondary progressive stage and Dave cares for her full-time at home. For him, planning is the key to managing MS and its effects on daily life.
Background: Dave, age 73, is a retired telecoms technical officer. He is white British, married with two adult children.

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Dave has been a full-time carer for his wife since he retired from work in 2002. His retirement coincided with a change in her MS from relapsing-remitting to secondary progressive. She had experienced symptoms of MS for many years (since pregnant with their first child) but the diagnosis had been withheld from them by doctors in South Yemen, Australia and Saudi Arabia. Only when they returned to the UK did a neurologist confirm the diagnosis, and even then (early 1980s) said to Dave, ‘Shall we tell her?’ Dave attributes this behaviour, among the ‘older’ doctors, to what he sees as their sense of incapacity in the face of an incurable disease. 

Dave thinks the key to managing with MS, as opposed to the alternative of being managed by the illness, is planning. His long experience of work as an expatriate manager equips him to achieve this. Regular domestic tasks and all excursions and journeys are subjected to this process.

Dave speaks highly of the support they receive from local friends and from other people with MS through the Mutual Support- Armed Forces group (part of the MS Society). They meet for long week-ends twice a year and enjoy spending time together. Support from statutory and other agencies is less forthcoming and Dave expresses bitterness at the recent withdrawal of a sitting service which permitted him 2 hours per month to go out and do his own things. He is scornful of statutory carers’ assessments carried out by the social services department of the local council which have been sometimes carried out by phone and which have yielded no support, even when his answer to the question, ‘Do you sometimes have suicidal thoughts?’ has been, ‘Yes.’

Dave speaks candidly and with some humour about the effects of MS on sexual activity and on emotional health, of the person with MS and their carer, both of whom may suffer from depression. He strongly recommends that all carers read a book by Hugh Marriott called The Selfish Pig’s Guide to Caring.
 

Dave’s wife Trish had relapsing remitting MS that progressed to secondary progressive MS. When he retired he became her full time carer.

Dave’s wife Trish had relapsing remitting MS that progressed to secondary progressive MS. When he retired he became her full time carer.

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About, let’s see, it was 19, 2002 when Trish changed from relapse- remitting to secondary progressive, funnily enough I was just retiring. So my retirement went straight into being a carer, and a full time carer because Trish went into a relapse and has been in one, getting steadily worse, that’s one of the things about MS it never gets better, it’s just getting worse so as a carer you know you’ve got more joys and tribune to come. 
 

Dave recalls that, years ago, doctors were reluctant to diagnose, and to tell his wife the diagnosis, both overseas and in the UK.

Dave recalls that, years ago, doctors were reluctant to diagnose, and to tell his wife the diagnosis, both overseas and in the UK.

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It wasn’t until we were working in Saudi, Riyadh that one of the first major symptoms came upon when and we were driving along one evening and she said ‘Why did they change the traffic lights?' not the traffic lights, the sodium lights, I said ‘Well they haven’t’, she said ‘Yes they have, they used to be yellow, they’re not now,’ and in fact she’d lost her colour vision. So we went to the doctors. Now, I’m not saying it wasn’t a good hospital but the carpet went three quarters of the way up the wall and the man who was a senior opthalmologist was supposedly the number three man in the world. And he turned round and he says ‘Well there’s nothing I can do beyond brain probes and I don’t want to do those.’ 

Later on when we returned to the UK and Tricia was diagnosed with MS the neurologist here asked permission of her to have some of his students in, and what he said was ‘Look into that eye, it’s classical retinal scaring, it might as well say, ‘MS.’ And what it was, was that the opthalmologist in Saudi, an American, didn’t want to diagnose and this has been a problem, we’ve talked with other people, that early on certain doctors were taught that they were Gods and if they came upon something which they couldn’t cure give it a long Latin name, tell them to come back in a year in either which case they’d died, end of problem, or that it’d cured itself, end of problem. 

That certainly was the attitude among old doctors; they refused to diagnose MS because they couldn’t cure it. So there was a lot of agro up until about the eighties and in fact it wasn’t until we got back here that our local GP at the time said, ‘I think you’ve got MS, go and see this neurologist’ and even then we went down to the hospital in [place name], to the clinic, and he came out and he said to me ‘Do you know what it is?’ and I said, ‘Well, I suspect that it is MS,’ ‘Shall I tell her?’ I said ‘Of course you’ll tell her, man,’ I said. ‘She’s been told she’s a weirdo for years.’ But that was, again, the attitude: ‘Shall we tell them?’
 

Dave explains how the Motability scheme works.

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Dave explains how the Motability scheme works.

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If you get Disability Living Allowance there is a two components, there is the care component and the mobility component. If you get the higher mobility component you can swap this for a car through the Motability scheme. I think it’s very good, not only do we get an MPV but it is serviced, the tyres are put in, the insurance and the tax is all paid, all I have to do is put fuel in and in three years time, or next week as it’s going to be, you get another car and that’s the way it is and that’s for putting in your Motability component.

And that’s free of charge, free of cost to you?

Free of cost, yes.
 

Dave resents the withdrawal of funding from a carers scheme that allowed him to go out for a couple of hours on his own every month while his wife was taken shopping.

Dave resents the withdrawal of funding from a carers scheme that allowed him to go out for a couple of hours on his own every month while his wife was taken shopping.

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How does MS affect me? Well, your life changes, I think, when you become a carer, because you no longer think about you but about the person you’re caring for. And invariably their needs come before yours. You don’t tend to have so much of a social life, on your own, particularly now we’re in the secondary progressive stage because are we going to fall over? Funding from Crossroads etc has been withdrawn so… I used to get two hours a month where they would come in and they used to take Trisha shopping. I could then go to a carers meeting so just ten miles away and that was good. Meeting other people, getting out having a life of my own but no it’s all ended and the funding’s stopped I feel bitter about that, it wasn’t a lot but it was an acknowledgment of my role as a carer, now there’s nothing. 
 

Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.

Dave and his wife, who are both trained relationship counsellors, contributed to a television film about ‘Sex over 70.’ Dave talks about some challenges of continuing to express love for each other physically.

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There is a tremendous thing that as a carer you come to regard your partner as a patient and therefore sex would tend to appear to be out of order, unprofessional or whatever and it does affect erectile dysfunction and things like this. Because of the change in mobility, in muscle control the variety of sexual positions becomes limited and one becomes quite inventive at times to go on, carry on expressing physically one’s love for each other. But it’s very difficult mentally to do this if you’ve had to pick somebody up off the floor, you put, stick them on the bed because they’ve fallen off the bed, by the time you’ve done all that and you’ve got them into a position you think, ‘Oh, no, I don’t feel like this anymore at all. I’m just knackered, I just want to go to sleep [laughter].’
 

Dave got useful advice from a Disability Resources Centre and some equipment supplied by occupational therapy services. They have bought additional items themselves.

Dave got useful advice from a Disability Resources Centre and some equipment supplied by occupational therapy services. They have bought additional items themselves.

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Can you tell me a bit about the sorts of the range of equipment and aids and adaptations that you’ve had over the years and that you have now?

Ah yes, we’ve tended to self fund to be honest because going through, but we had some also some very useful advice from the [name] Disability Resource Centre, the OTs there, we went up and talked to those and they suggested certain things but we had for instance the bath lift, chair lift, electric gets you in and out, to be honest I use it as well, because as you get on, you know, because I can get down but I can’t get up. We got that, they were very good they did actually fit grab rails; we’ve got more grab rails than we’ve got wall space in the bathroom things like that. But we’ve bought extra things for ourselves, they’ve supplied a Zimmer frame but we’ve got walking rollators some with seats and I bought, we bought the wheelchair because we didn’t like their wheelchair and I bought a motor that goes on it so it helps me push it as well. She’s got a very nice, being Tricia it’s got to be painted gold, the frame, you see. But it is a very nice Dutch wheelchair. But if you’re going to do it, you might as well do it big, you know! That’s it. We’ve got a hoist at the moment which is, unfortunately, not very useful because it doesn’t fit in the bedroom. Yes, so, if she falls down in the lounge we’re alright but if she falls down in the bedroom guess who’s got to strain his back? In fact, what I did I bought, I bought a slide sheet to pull her out here or pull her out from the bathroom to be honest because we always fall down in tight little places so I’ve got these slide sheets which I put on and pull her out. Then maybe we can get the hoist and get her up, wheel her round and put her in the chair again because at the moment we don’t have the ability to get back up if we’re down. 

She’s got a whole host of walking sticks which are not much use to her at the moment but and in fact a grand one, black apple wood with crystals in. It was almost like, ‘By the power of Greystone’ [laughter], that was good for cruises you could totter along with it you see, it was good for poking little boys with it as well [laughter]. But no, a lot of things we’ve found out and we’ve funded ourselves, to be honest. You can get some things but, no I won’t be un-PC but you have to be very special to get a lot of help.
 

Dave talks about having to try to cheer up his wife when she is depressed, while being on anti-depressant medication himself.

Dave talks about having to try to cheer up his wife when she is depressed, while being on anti-depressant medication himself.

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My emotional state is quite bad, I’m on tranquilisers, sorry, anti depressants, anti depressants, very heavy dose, so that I can maintain a relatively nice median level and not end up shouting and jumping up and down and doing things like that. So nicely drugged, you know, things like that.

Do those have any unwanted effects on you?

They can have problems with erectile dysfunction in men they can flatten your life but then since you’re trying to maintain a medium life, dull grey is perhaps not too bad [laughter] you settle for second best as a carer.

If I heard you right earlier on you talked about depression in the person with MS being, being one feature of life and your role being to be the cheerer, how are you enabled to fulfil that role given your mood changes?

Normally, as a carer they come first so you are, your needs are secondary. And sometimes you don’t, well you don’t let yourself get into that, you try and buck up. On odd occasions one’s gone out and I’ve gone on the computer rather than carry on shouting [laughter] You do shout, it’s more frustration, it’s not frustration with the person it’s frustration with the situation, the disease, with yourself. I just go in the next room, spend five or ten minutes and come back. And also when she’s fallen down, tends to just lay there and doesn’t cooperate and try and get up, you say, ‘Oh, I’ve got to get out,’ otherwise it descends into physical violence; you don’t want to go down that road. But it’s one of the roads that, unfortunately, some carers do find themselves in this situation. So your mental state, your emotional state and your physical state, you’re not very good. Six out of ten’s a good day.
 

Dave describes the help he gets by being a member of the ‘Mutual Support Armed Forces’ group.

Dave describes the help he gets by being a member of the ‘Mutual Support Armed Forces’ group.

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But one thing about MS you have a caring society of people with MS, we look after one another. We belong to, we belong to the MS Society and we used to go to [place name] and to fetes and things like this fundraising and now we belong to Mutual Support which is for the armed forces. I used to be in the RAF and I also worked with the MoD so I was eligible to join and I must say that the people there are a tribute. In spite of this debilitating disease they’ve managed to press on and make the most of it. And the attitude of the armed services these days is quite enlightened; they no longer throw people out at the first instant but they retain them, they give them a job more suitable for their disabilities and things like that, so. 

But people in Mutual Support are wonderful. They are supportive; for instance, Trish fell over in March of this year, six months ago, and broke the head of her femur. Well, I was getting people ringing me up saying anything we can help, this that and the other, besides our own circle of friends. Having people like that in the background doing it for you, that’s it. We only meet twice a year but we have a three day weekend at some hotel somewhere and we thoroughly enjoy it. Talks, often a lot of beer or wine but it’s a good fun, we all can relax and enjoy each other and enjoy that.
 

All Dave’s plans are based on what his wife is able to do. He always has a back-up plan ‘in case it all goes wrong’.

All Dave’s plans are based on what his wife is able to do. He always has a back-up plan ‘in case it all goes wrong’.

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How far ahead into the future do you, do you look?

Ah, well it depends what for, make lots of plans but always have plan B,C & D because it may all change, everything you do in the future is conditional. Are we able to move, are we able to walk, are we continent, can we do this, can we do that, if we’re not [swish noise] and therefore you make a plan and you will say stop, you know you want to go to a hotel and it may turn out that we’re not up to scratch for going out, so you just cancel it. Sometimes you have to pay cancellation fees but I mean we’re booking ahead for cruises into two thousa, two years ahead. 

One of the main reasons is it gives you hope, it gives you something to strive for and by booking ahead you get what you want and get it cheaper [laughter] so there’s method in the madness you see. But you do plan because if you’ve got plan A you can always change it, if you don’t have a plan you’re in chaos because as a carer you like things fairly rigid and laid out, we’re gonna do this. That’s why I plan all the meals I get all the stuff in so I can do that, as I explained just in case it all goes wrong, but if it goes wrong then you’ve just got to put your hands up and [swish noise]. We are eating some meals now which I was actually preparing when Trish fell down and broke her femur and had to go to hospital. But that’s alright; I finished off the next day and put those in the freezer so we’re now eating some of those meals.
 

Dave has felt suicidal but has always decided against killing himself because apart from being, he says, a ‘coward. You don’t want to, because you’ve got somebody depending on you.’

Dave has felt suicidal but has always decided against killing himself because apart from being, he says, a ‘coward. You don’t want to, because you’ve got somebody depending on you.’

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Is there anything else that you think health and social care workers could supply by way of a service to you that they don’t?

Oh, how do you know you want something? They ought to stop saying we are going to help you and what they do is hand out leaflets or brochures and you have to get on with it yourself, that’s it. Maybe it’s good to do it but sometimes you don’t have time to do it, maybe they could assist you with doing some of these things, put themselves in. If one was an unmarried mother, even better an unmarried lesbian mother, maybe I’d get more help, but I’m not and therefore I’m seen, get on with it, he’s coping and that’s it, you know. And they ask you a question, one of the questions on the carer’s assessment, ‘Do you ever feel suicidal?’ You say, ‘Yes.’ ‘Oh, dear.’ That’s the end of it, ‘Oh, dear.’ On one occasion we were on a cruise and I thought, ‘Shall I jump overboard?’ And I thought, ‘No, no, no, no it’s cold.’ [laughter] I’m a coward! You don’t want to because you’ve got somebody depending on you and they depend on that, that you won’t harm yourself because you’re caring for somebody. So, they get away with it.
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