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 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.
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.
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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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.
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.
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.
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.
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.
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’.
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.’
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.