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.
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.
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.
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.
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.
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.
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.
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.
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.
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.’
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’.
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.