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Robin

Age at interview: 72
Brief Outline: Robin’s wife has had MS for 20 years. They live together in the house where they brought up their children.
Background: Robin, age 72, is a retired TV producer and Open University lecturer. He is Caucasian/English, married with four children.

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Robin’s wife was diagnosed with remitting relapsing MS around 1991, to Robin’s great shock and dismay as they had seen his wife’s mother suffer greatly with MS and had been told that there was no genetic component in the disease. The illness has advanced to the secondary progressive stage and Robin is now a full-time carer to his wife, having given up his part-time teaching job at the Open University. His wife is mobile in the house with a walking frame and a stair lift but they are now in the process of having extensive adaptations made to the downstairs of the house to create a bedroom and a wet room. Robin does all the shopping, cooking, laundry and driving. They pay for some cleaning and gardening. 

Robin and his wife have been, and are, very active in looking for information and support. Robin speaks highly of the MS specialist nurse, the Citizens Advice Bureau and the national network of MS Therapy Centres. At the MS Therapy Centre which they attend Robin’s wife is able to have physiotherapy, chiropody and oxygen treatment which, Robin explains, is not a curative therapy but seems to prevent the disease from getting worse. The local social services department has an ‘MS Navigator’ who is also helpful at providing information about sources of support. 

The role of carer has brought heavy financial costs. First of all, the drop in income from giving up paid employment. Secondly, expensive equipment and adaptations (stair lift, adapted vehicle, downstairs bedroom and wet room) along with paid for services such as the ‘Lifeline’, which enables contact with emergency support services. Robin’s wife is also currently having a course of vitamin injections recommended by a Harley Street specialist. Robin and his wife have paid all these costs out of their savings. Their income is supplemented by the Disability Living Allowance but, otherwise, Robin states ironically, their lifelong prudence in saving excludes them from financial support.

Robin’s own health is not very good and he does find all the caring for his wife burdensome. But he is uncomplaining and appreciates the support of their four children. They have also valued the opportunities for respite care offered through the MS Society. Three or four times a year, Robin’s wife has spent a week in respite care, which she enjoys as a holiday and which gives Robin a rest. He is critical of the MS Society’s decision to give up funding respite care and hopes that she will be able to continue going to the care home under a different funding arrangement.
 

Because Robin had already had a carer’s assessment, the social services department were ready to step in when he had to go into hospital.

Because Robin had already had a carer’s assessment, the social services department were ready to step in when he had to go into hospital.

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Find out if you know where your social services department are and ring them up and explain what your problem is, ask them to come along and have a look at your wife and they’ll even do an assessment on all your wife’s needs or your husband’s needs or whoever. which can be very useful because then they know if for instance the carer falls ill, carers do fall ill that they’ve got somebody on their books that’s going to need emergency looking after, so one phone call will bring them round hot foot. I had a bad accident last year where I fell downstairs and punctured my lung, I had to spend a week in hospital and they came in and were very helpful then. So never despair, there’s always a way out, apart from the final analysis of course where there is no way out for any of us.
 

Robin is very busy caring for his wife, but they find time to follow their interests in archaeology and history together through reading, watching television and taking part in organised trips.

Robin is very busy caring for his wife, but they find time to follow their interests in archaeology and history together through reading, watching television and taking part in organised trips.

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Yes, I’ve got other interests. History and archaeology is one of them. Every year we go on a coach trip with the local archaeological society. We’ve just come back from one, we went up north to Durham and Hadrian’s Wall and that’s very good because the organiser of the trip is himself disabled and he goes to a great deal of trouble to look out disabled hotels and places where we can get round in the wheelchair, pushing a wheelchair and things like that. So we’ve got a kind of symbiotic relationship there which is quite helpful. And I take a lot of history magazines and we watch Time Team and all that sort of stuff. My wife’s very keen on that too, although it hasn’t been so good lately, I fear. I think they’re scraping the barrel a bit.
 

Regular respite care has really mattered to Robin because it gives him temporary relief from the task of caring for his wife.

Regular respite care has really mattered to Robin because it gives him temporary relief from the task of caring for his wife.

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I have to do everything I do all the shopping do all the cooking, do all the laundry if you look in our kitchen you will find that there is no kettle out there because it would be dangerous for my wife to make herself a cup of tea. What we’ve got is a kind of urn, where you push a button on the top and hot water comes out of the spout and you pour that onto a teabag and even in my wife’s state can make herself a cup of tea if she wants to. Not that she does I generally speaking make it but yes I have cleaners in keep the place tidy not often enough unfortunately but... I do all the driving yes I do everything. I’m not complaining but it’s a burden and that’s why I’m so aggravated about respite care because respite care is really, really important. My wife can get away three or four times a year or has been able to get away three or four times a year, give me a break, which means quite literally I lie in bed till 11 ‘o’ clock in the morning sometimes which is wonderful, not worrying about what she’s up to, having to go and make her breakfast and bring it in bed and getting her in the bathroom and all that stuff.
 

Contact with social services, through the ‘MS Navigator’, has put Robin in touch with services to help with the installation of a wet-room and also provided emergency care for his wife when he had to go into hospital.

Contact with social services, through the ‘MS Navigator’, has put Robin in touch with services to help with the installation of a wet-room and also provided emergency care for his wife when he had to go into hospital.

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One other resource that’s worth going for is your local social services, they haven’t any money to give you unfortunately, or very little but what they can do is give you useful advice and attention. Our social services for instance have a person called the MS Navigator on their staff and you ring her up and say ‘Look this is the problem we’ve got, my wife has MS who do I talk to about this?’ and she goes and finds, put you in touch because these departments are all over the place in different buildings and different towns and all the rest of it. And we’ve got one chap for instance who’s a physiotherapy expert who’s advising us on the layout of the wet room that we’re going to install downstairs and he knows all about that as that’s his speciality. And he’s also put us in touch with a firm of project managers over in another town in the area who are coming in and advising us on how to do it, how to plan it, all tricks and things you’ve got to know about building regulations and all the rest of it. So yes that’s another place to go for help.

And as I say find out if you know where your social services department are and ring them up and explain what your problem is, ask them to come along and have a look at your wife and they’ll even do an assessment on all your wife’s needs or your husband’s needs or whoever. which can be very useful because then they know if for instance the carer falls ill, carers do fall ill that they’ve got somebody on their books that’s going to need emergency looking after, so one phone call will bring them round hot foot. 

I had a bad accident last year where I fell downstairs and punctured my lung, I had to spend a week in hospital and they came in and were very helpful then. So never despair, there’s always a way out apart from the final analysis of course where there is no way out for any of us.
 

Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.

Robin says it is vital to get information about resources that can help you. He thinks they are lucky to have much more help than when his wife’s mother had MS 30 years ago.

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I think the business of getting as much information as you possibly can is absolutely vital if you don’t get information, you can’t take any action and if you can’t take any action you become a prisoner of your own caring situation. It’s difficult enough being a carer, nobody pretends it’s easy why do we do it, we do it because we love the person we’re caring for I think or perhaps in extreme cases you feel a sense of bounden duty I don’t know. But unless you do what I suggest in terms of getting in touch with social services, appropriate medical advice magazines that deal with the subject and MS Therapy Centres and MS nurses you won’t know what resources are ready for you to use and what opportunities are open to you. Now when I compare it with the way it was 30 years ago for my wife’s mother, practically nothing of what’s now available was available then so we’re very lucky really, very lucky indeed.
 

Robin talks about the phases MS goes through, first relapsing and remitting MS and then secondary progressive MS.

Robin talks about the phases MS goes through, first relapsing and remitting MS and then secondary progressive MS.

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There’s no cure, yes symptom relief. But also holding back the disease as you know with MS it goes through a number of phases I mean the first phase it just comes on the second phase it goes into relapsing remitting which means that you get better for a while and then you get a bad attack again and then you get better again and then you get a bad attack. And then you’ve got the final stage which is called secondary MS and once you get to secondary MS that’s it really, nothing you can do about that. 
 

Robin never noticed his wife had any symptoms, so he was ‘thunderstruck’ by her diagnosis. His only knowledge of the condition came from seeing her mother die with advanced MS.

Robin never noticed his wife had any symptoms, so he was ‘thunderstruck’ by her diagnosis. His only knowledge of the condition came from seeing her mother die with advanced MS.

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I never noticed anything I suppose that’s because my wife’s mother also had MS very badly and by the time I knew her she was incontinent, in a wheelchair, practically unable to speak, she died at the age of 58. And it was a very, very upsetting experience. I just didn’t want to know about MS frankly. So it was my wife who realised that she’d got MS and she went along to the hospital and got diagnosed and came out and told me and I was thunderstruck, I couldn’t believe it had happened twice in the same family especially with being assured by the doctors that there was no genetic component to MS which we now know is not true. 
 

Robin found out about the Citizens Advice Bureau at the local MS Therapy Centre. He got help with completing the forms for Disability Living Allowance and his wife’s payments were increased.

Robin found out about the Citizens Advice Bureau at the local MS Therapy Centre. He got help with completing the forms for Disability Living Allowance and his wife’s payments were increased.

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The other thing you could do is to join your local MS Therapy Centre. There are about 60 MS Therapy Centres all over the country, they’re charitable organisations and you can, for instance, get oxygen treatment at nearly all of them. 

And they will do other things like chiropody at very low prices, they’ve got trained physiotherapists and of course they’re wonderful for exchanging information. The one thing that you don’t get with MS, as the thing with other diseases is information when you need it. If you go to an MS Therapy Centre you’ll be entirely surrounded by people who’ve either got MS or carers and you can ask any question you want and somebody will have experience and can help you, absolutely wonderful. We picked up from one person in our MS Therapy Centre, the information that the Citizens Advice Bureau would actually do peripatetic visits in other words they come to your home, which we didn’t know, so we got onto the Citizens Advice Bureau and said can you come round and have a look at our thing and they came and looked at my wife and said ‘Hey, you’re a lot worse than you told me you are.’ So they filled in the Disability Allowance forms for her and increased her payments by £50 a week, now that’s a serious improvement.
 

Robin warns to be prepared for substantial loss of income and high expenses if ‘the disease gets very bad.’

Robin warns to be prepared for substantial loss of income and high expenses if ‘the disease gets very bad.’

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I think having talked about money a bit I’d better say that one thing you’ve got to be prepared for if you’re a carer for someone with MS is your income going down quite substantially. I mean first of all you probably won’t be able to hold down your job if you’re a full time carer I had to give up my job it was only a part time job because I couldn’t manage but that was £10,000 a year income off xxxx. There are things like the converted vehicle which cost about £4,000 more than a normal vehicle and all sorts of gizmos. There’s a thing called Lifeline which consists of a lanyard you hang round your neck and you have a connection to a distant call station where if you have a fall you just push the button on your lanyard and they come on the line and say 'Are you alright?’ and if you say ‘No I’m not, send paramedics round,’ they send the paramedics round. So what you do then is you install what you call a wall safe outside the front door and you put your key in it and you tell the Lifeline people what the code is so that the paramedics can let themselves in even if you’ve collapsed somewhere in the house and can’t get to the front door to let them in. It’s a wonderful thing for the carer because it means you can go out for half an hour without driving yourself potty wondering what’s happening to the person you’re looking after. 

And other expenses are for instance that if the disease gets very bad you’re probably going to have to bring whoever it is downstairs because they can’t get up and down the stairs anymore, that’s another expense by the way, stair lifts. they can’t get up and down the stairs anymore even on the stair lift so we’re in the process of having the two downstairs rooms, two of our downstairs rooms converted into a bedroom and a wet room for my wife. It’s going to cost me about £25,000 and there is no grant available for this because I own my house and therefore I’m a rich man aren’t I? 
 

Robin appreciates that the MS nurse understands his problems and ‘will look after the carer as much as the person who’s got MS’.

Robin appreciates that the MS nurse understands his problems and ‘will look after the carer as much as the person who’s got MS’.

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In fact one thing I think I’d say to anybody who’s looking after somebody with MS don’t rely on the doctors unless they’re specialists in MS. Your GP for instance may be the nicest man in the world but he’s probably only got three patients with MS so why should he know anything about MS. you need to go to somebody like an MS nurse if you’ve got one in your area, MS nurses are wonderful and specially trained.

Could you say anything more specific about the kinds of things the MS nurse does to help you?

The first thing the MS nurse does is just be there and you know you’re going to talk to somebody who understands what kind of problems you’ve got. And the MS nurse will look after the carer as much as the person who’s got MS because they realise perfectly well that without the carer everybody’s up the spout. the MS nurse will also liaise very closely with your GP and more or less tell the GP what kind of treatment she recommends and most GPs are humble enough to understand they don’t know very much about MS whereas the MS nurse does. And so if the MS nurse says you’ve got to have this sort of medicine or whatever you’ll get it prescribed for you.
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