A-Z

Multiple Sclerosis: friends & family experiences

Paul Z

Age at interview: 56
Brief Outline: Paul’s wife has had MS for 20 years. She is now profoundly disabled and Paul is her main carer. He is supported in his caring by his children, who visit frequently, and by health and social care workers.
Background: Paul, 56, is a former learning resources manager. He is white British, married with two adult children.

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Paul is in his mid-50s and has recently retired from work so that he can look after his wife, who is profoundly disabled by MS, full-time. He still has some support from paid carers during the week, to help with washing and feeding his wife, and to allow him some time for his own activities (he enjoys ‘playing’ with classic cars and has applied to become a magistrate).

In the interview, Paul tells stories of having to push for information and support. After voicing his frustration that no-one had explained MS, or its likely prognosis, a consultant explained the disease to him. He searched the internet for information on benefits and found that funding for electric wheelchairs had been allocated to local authorities and ring-fenced. Armed with this knowledge he was able successfully to apply for an electric wheelchair which would enable him to take his wife out more easily in the hilly areas where they live. He also gained advice about how best to complete application forms for benefits.

Paul’s wife is now in receipt of continuing care services provided by the health service, rather than social services, and Paul finds that this is much better for his wife, and for him. He speaks highly of the expert care provided by district nursing services, and their close liaison with the GP. The support provided by private care companies, funded through social services, had, at one point, become so unsatisfactory that Paul lodged a formal complaint, which was upheld following an independent investigation had been upheld on every count.

Paul has found that, since giving up work, he has become more knowledgeable about MS and about how best to support his wife. He has learned, for example, about the effects of urinary infection and is alert to changes in his wife’s behaviour which signal that he needs to do a urine test and to consult the GP. He is supported, too, by his adult children, who visit regularly and make their own observations of their mother’s condition, sometimes seeing what Paul doesn’t see because he is too close.

Paul speaks of the importance of talking with close family members and considers himself fortunate to be so well supported by his children and grandchildren. Understanding and support from extended family, by contrast, is not so good.

Paul and his wife enjoy supporting a local sports team, even travelling abroad to attend matches. They are well-known at the club, with the Chief Executive often helping to assist Paul’s wife onto the coach. Facilities at some sports grounds for people in wheelchairs are not always satisfactory, though, and Paul talks about an experience which, again, resulted in a complaint from him which, pursued through the Minister for Equality and Diversity and the Minister for Sport, resulted in positive change. As Paul says of himself, ‘I don’t like barriers’ and ‘if the rules need changing, argue and change the rules’. 

Paul concludes with this message for people who, like him, are living with and caring for a relative profoundly disabled by MS: ‘You’re not by yourselves. Have a good relationship with your district nurse, more than anybody, in terms of getting care for your loved one. MS Nurses and GPs are a source of useful information and support. You’re an individual. Don’t allow anyone to put you in a box’.

Paul is in his mid-50s and has recently retired from work so that he can look after his wife, who is profoundly disabled by MS, full-time. He still has some support from paid carers during the week, to help with washing and feeding his wife, and to allow him some time for his own activities (he enjoys ‘playing’ with classic cars and has applied to become a magistrate).

In the interview, Paul tells stories of having to push for information and support. After voicing his frustration that no-one had explained MS, or its likely prognosis, a consultant explained the disease to him. He searched the internet for information on benefits and found that funding for electric wheelchairs had been allocated to local authorities and ring-fenced. Armed with this knowledge he was able successfully to apply for an electric wheelchair which would enable him to take his wife out more easily in the hilly areas where they live. He also gained advice about how best to complete application forms for benefits.

Paul’s wife is now in receipt of continuing care services provided by the health service, rather than social services, and Paul finds that this is much better for his wife, and for him. He speaks highly of the expert care provided by district nursing services, and their close liaison with the GP. The support provided by private care companies, funded through social services, had, at one point, become so unsatisfactory that Paul lodged a formal complaint, which was upheld following an independent investigation had been upheld on every count.

Paul has found that, since giving up work, he has become more knowledgeable about MS and about how best to support his wife. He has learned, for example, about the effects of urinary infection and is alert to changes in his wife’s behaviour which signal that he needs to do a urine test and to consult the GP. He is supported, too, by his adult children, who visit regularly and make their own observations of their mother’s condition, sometimes seeing what Paul doesn’t see because he is too close.

Paul speaks of the importance of talking with close family members and considers himself fortunate to be so well supported by his children and grandchildren. Understanding and support from extended family, by contrast, is not so good.

Paul and his wife enjoy supporting a local sports team, even travelling abroad to attend matches. They are well-known at the club, with the Chief Executive often helping to assist Paul’s wife onto the coach. Facilities at some sports grounds for people in wheelchairs are not always satisfactory, though, and Paul talks about an experience which, again, resulted in a complaint from him which, pursued through the Minister for Equality and Diversity and the Minister for Sport, resulted in positive change. As Paul says of himself, ‘I don’t like barriers’ and ‘if the rules need changing, argue and change the rules’. 

Paul concludes with this message for people who, like him, are living with and caring for a relative profoundly disabled by MS: ‘You’re not by yourselves. Have a good relationship with your district nurse, more than anybody, in terms of getting care for your loved one. MS Nurses and GPs are a source of useful information and support. You’re an individual. Don’t allow anyone to put you in a box’.
 

Paul wants to take a positive attitude. He realises that limitations will come as MS progresses but he makes the most of their life as it is now.

Paul wants to take a positive attitude. He realises that limitations will come as MS progresses but he makes the most of their life as it is now.

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I have a can do attitude. My wife, because of her condition does tend to… I can’t do. Causes a little bit of conflict, sometimes. But I, you know, try to be positive. If I can do it, I will. And if I have to go round…it can be done. I…there will become a stage, I know, my wife’s condition, where she won’t be able to stand and we will end up probably tied , or limited, in what we can actually do. But then we can sit down afterwards and say, ‘Wasn’t it good when we did this?’ And that happens to everybody, with age. You just get old. We can’t stop that. But you can sit there… a good friend of mine has this thing, the ‘rocking chair syndrome.’ He wants to sit in his rocking chair and think, ‘I did this, I did that, I did the other.’ Not, ‘I wish I had done this, I wish I had done that…’And that’s some of the best advice… he were my first boss, he’s my best friend and some of the best advice I’ve ever had in my life. So if I can do, I will do. If I can make it happen for her, I will make it happen for her. Because it makes her life better. I get more pleasure from that than anything else. To see that smile come on her face because she’s wanted to do something and we’ve done it.
 

Paul has learned to cook differently, to help with his wife’s swallowing problem.

Paul has learned to cook differently, to help with his wife’s swallowing problem.

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My wife has problems with swallowing. I read some of the information and they all give you recipes for… to help with swallowing and one thing and another. And, I’m not a good cook, my wife will tell you that, but…I still have a lot to learn. But then when I researched on the web on some other information I’d got from a secondary source I think it actually came from Age Concern, who were brilliant when you’re looking for things like benefits and stuff like that, which, outside the thing of MS…MS’ll focus on the conditions and all this sort of… Age Concern have done a lot of benefit for older people. And what I actually found is…it says, make sure a meal, any meal that you prepare, has a sauce or gravy with it so it lubricates. I thought, common sense isn’t it. I play with old cars, lubrication in car engines it makes sense. I’d never thought of it. So, now, when we make a meal we try and make sure there’s some sauce or some gravy or something with it. And it works. Now, I now know, you know, a lot of these recipes that were there with sauces, I didn’t know why. But I know why, now. So, now I know why, I’ll do it. Whereas I’d looked at recipes and, ‘Oh, I don’t like that, she doesn’t like that, I’m not going to do it.’ But the more point… you find food you like, but make your own sauce with it. So it’s something, again, we’ve learnt about it.
 

Paul wanted a particular type of stair-lift but the Local Authority wouldn’t fund it.

Paul wanted a particular type of stair-lift but the Local Authority wouldn’t fund it.

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In terms of adaptations to houses and things like that one of the things that I’ve found frustrating is you go to your local authority you get, ‘You can’t have this.’ We wanted a particular type of stair-lift, because we’d sussed it out, we’d looked up we’d looked round and we’d been talking about it, and for our house, there was only one particular type we could find. When we had the people came to do the assessment, they offered us all sorts of things because they wouldn’t support the type of stair-lift that we felt was best for our needs. It turned out they did actually agree with us but it wasn’t a company that they’d got the tender with, wouldn’t supply, so we couldn’t have it because it wasn’t in the ‘rules’. Beggar the rules. Try and change them.
 

Paul couldn’t get financial help from the local authority to adapt his bathroom. He was not amused, later, when people from the authority came to look at the work he had done so they could install something similar for other people.

Paul couldn’t get financial help from the local authority to adapt his bathroom. He was not amused, later, when people from the authority came to look at the work he had done so they could install something similar for other people.

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Adaptations that we’ve done…we changed the bathroom. Again when we looked at…it was a standard family bathroom and my wife at that time needed to use a shower chair and so, obviously, the bathroom needed to be adapted. We asked at that time about adaptations and, nothing they could do. We put… we wanted a Closimat toilet, to make things are easier for her. And the council at that.., no funding available. As I mentioned earlier the… we’re part of a trade union. They gave us an interest free grant. We, or I, actually did the adaptations to the bathroom myself. Once we’d concluded it, during one of these visits while I was at work one of the people who came in to check my wife said, ‘Can we use the toilet?’ Went upstairs, came down and says ,‘Wow, what have you done up there?’ So, my wife explained that we’d done it. And we… my wife and I just sort of laughed about it when she told me. Anyway, two or three weeks later my wife said, ‘Oh, they’ve been round again.’ And I just sort of dismissed it as a routine visit and she says, ‘No, they’ve been round again to look at the bathroom.’ I said, ‘What do you mean they’ve been round again to look at the bathroom?’ She says, ‘Again. This is about the fourth or fifth time they’ve been round.’ I says, ‘Why, what’s wrong with it? Because, automatically, it made me suspicious, you know. She says, ‘Oh, no. There’s nothing wrong with it. They’re bringing people round, other people, to look at it, to see, to show them what adaptations they could do to their home.’ So, I rang up and said, ‘These visits you’re doing to our house?’ ‘Oh, we’re bringing other people in, cos we’re showing them what can be done and we’re putting them in for other people.’ I says, ‘You’re putting what we’ve done in our house in for other people?’ They said, ‘Yes.’ I said, ‘Well, can I have my money back for what I’ve done?’ Of course I got a, ‘No.’ So, I then asked for £60 consultancy fees every time they came in. I didn’t get it. They stopped coming.
 

Paul thinks that the bureaucracy of care management does not always treat his wife as an individual.

Paul thinks that the bureaucracy of care management does not always treat his wife as an individual.

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We’ve had problems with care companies, and they say, ‘Oh, we can’t do this, we can’t do that…’ And my question is, ‘Why?’ Silly little incident was my wife’s arm had dropped down to one side. And we asked could they lift it up when it drops down? We got told, ‘It’s manual handling.’ What??! So, what I actually did, then, was start to raise questions. What we actually ended up doing was putting in a formal complaint because we got frustrated and weren’t getting anywhere.

We went through the formal complaints procedure. It was hard work. But, when we had the independent person to come and look at the complaint, at the end of the interview [and] she said, ‘My God you guys have been through it.’ A fortnight later we got a letter from the local authority saying every single count that we had raised had been upheld. We shouldn’t have to go through that. And by more and more of us getting on board and voicing it… I know there’s a Carers Association. They do a good job. But, they tell us with adaptations etc, everybody’s an individual. No, I’ll change that. What they tell me…with MS everybody's an individual and everything…that people… MS affects people differently, different people in different ways. However, when you get into the bureaucracy-and it’s not the careworker, it’s not the social worker that I…they’re tied by this bureaucracy, meeting targets etc.- what you actually get there is you’re not treated as an individual in that respect. MS affects you individually. Everybody’s different with it. Yet they try and put you into a box. And we argue, we’re not in a box. What’s right for you might be wrong for me. And the same goes with carers.

And so don’t be afraid. I’ve worked through frustration. I‘ve had to get to a point where I got so frustrated it’s come out in like, ‘I’m making a formal complaint.’ I get no satisfaction in saying I want a formal complaint because when I actually got the letter through from the authority saying all had been upheld, I didn’t realise how stressed I was, I just burst into tears and I can still feel myself filling up a little bit there. Because you’ve won, but you shouldn’t have to win. It’s not about winning; it’s about getting what you’re entitled to, what the person that you’re caring for is entitled for. And don’t bottle things, talk to your close members of your family.
 

Paul said his children ‘live it like we live it,’ even though he and his wife have encouraged them to live their own lives and not be affected by her MS.

Paul said his children ‘live it like we live it,’ even though he and his wife have encouraged them to live their own lives and not be affected by her MS.

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Our children live it as much as we live it and they see it and it took me a while to sort of say, not when they were younger but as they got older, to say, ‘Do you think your mum’s alright?’ because I’m too close to it. And they’ll say, ‘No, I don’t think she is.’ And they’ll say, ‘Have you done this test, have you done that test?’ And I’ll say, ‘No, I haven’t.’ ‘Well, do it.’ And that’s the way we bat it on. We’re really proud of our kids because… we try not to let the MS…we’ve said to them, ‘We don’t want it to affect what you do. You go and live your own lives.’ And they’ve all left home, got their own families and they’re enjoying life.
 

Paul has become friends with his neighbour over the years and values the reassurance of knowing that she is there and willing to help.

Paul has become friends with his neighbour over the years and values the reassurance of knowing that she is there and willing to help.

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We’re fortunate in that we have lived here a long time and we’ve got a neighbour, one in particular, who is brilliant. If for… if for any reason I’m out and I get stuck in traffic, it happens, I know I can ring and say, ‘Can you just pop in and see if she’s alright for me?’ and she will. She’s brill. And, I say, ‘neighbour,’ we’ve become friends over the years. And I know that that’s there, and I may only use it once every ten years, but it’s just reassurance and, you know it’s there… because you live your life with your carers and carers are all over and carers are human beings and they can go ill. And so it’s nice to know there’s somebody there.
 

Paul talks about fighting for funding to get his wife a particular reclining chair. ‘If the rules need changing,’ he says, ‘argue and change the rules.’

Paul talks about fighting for funding to get his wife a particular reclining chair. ‘If the rules need changing,’ he says, ‘argue and change the rules.’

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And, again, we ended up in a situation by… we needed to get her a reclining chair and it was, ‘Oh, we can’t do this, we can’t do that’ etc. Again, I’ve been on the web. I found out they did do these chairs-I’m going back a few years, they’re quite common now. And so I actually rang the company and explained the situation. And they were really helpful and said, ‘We can let you have one to try for a fortnight on sale or return.’ Brilliant. So I had this information and when they did this assessment I asked for one of these chairs. ‘Oh, it will take months to do this and you’ll have to do all the care in the meantime.’ I said, ‘No. It’s not my job, it’s your job. I don’t… which one of the six of you who are there whose job it is, but it’s your job not my job. You need to sort it out.’ ‘Oh, we need time.’ I said, ‘You’ve had a week, and you’ve done nothing.’ And they’re… ‘Oh, we’ve been waiting till the review.’ I said, ‘Well, I’m not prepared to carry on much longer.’ And I told my wife what I was going to do. And what I’d actually done, I’d got a holdall at the back of the chair and I picked it up and I said, ‘Right, I’m leaving. I’m going out that door now, so it is your problem now because I ain’t doing it anymore.’ All of a sudden, ‘Oh, what can we do?’ So I said, ‘We need one of these chairs.’ ‘We’ve already explained.’ I said, ‘Fine, here’s the telephone. Ring that company. You can have one sale or return, you can have them for a trial.’ ‘Oh, we can’t go and get it.’ I said, ‘I can. I can get in my car, now, and go. They need your authority to do it.’ We got the chair.

We shouldn’t have to fight like this. But you’ve got to fight it. And you’re an individual, you have rights. The person you care for has rights, as an individual. And you don’t have to do what they say: [if] the rules need changing, argue and change the rules. There’s people out there to help and there’s loads of information on the web. 
 

Paul talks to health professionals, and uses the internet extensively, to find out things that will help him understand his wife’s experience and look after her as well as he can.

Paul talks to health professionals, and uses the internet extensively, to find out things that will help him understand his wife’s experience and look after her as well as he can.

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I still wanted to know what the impact was going to be and, I’m searching for answers and I couldn’t get any. I got very frustrated with it, to such an extent that on one occasion when she was in a rehab part of the hospital, one of the nurses picked up how I was frustrated and suggested we rang the consultant. I said, ‘The guy is busy with his patients. He doesn’t need me ringing him,’ She said ‘Well, what do you want to know?’ So, I explained what I wanted to know. She said, ‘The one person who can tell you is this guy. Ring his secretary.’ So, I rang his secretary and she was brilliant, arranged for me to go and see him, I went to see him, he said, ‘Right what do you want to know?’ I said, ‘Well, I want to know what’s going to happen.’ He said, ‘Well, everybody’s an individual and with MS it affects different people in different ways’, but he said, ‘Basically there’s the three types’. And so what he actually did then…he says, ‘Has anybody explained to you about how we diagnose it?’ I said ‘No,’ he said ‘Have you seen the MRI scan?’ I said, ‘I’ve seen them but nobody’s ever explained to me what they are.’ Because, when you’re there as a carer or a support, I initially used to sit back let them talk to my wife let her ask the questions and try and prompt her. I didn’t think it were my place to ask questions. And so I’ve sat back. I probably have had the opportunity but not felt as though and… the doctors’ attitude then started to change. They started to ask me then if I had any questions because I’ve done this in later stages. But, he put the MRI scan up and said, ‘Right, what do you want to know?’ I said, ‘What’s that big blob there in her brain? Is it a tumour?’ And he just laughed. He said, ‘That’s her eyeball.’ So, we laughed and then he explained about the plaque. I could see the plaque and how it was affecting her body. And, then, I started to get an understanding. I didn’t have the answers to what the problem was, but I started to have an understanding about how the body was functioning and not functioning and how things were being affected. So, that’s how I started to get involved in it.

How have I found out a lot of the information? I use the web. MS Society produce information, but it’s more general information. When it comes to things like form filling for benefits, you search…I did a search on the internet and found out that, when councils and authorities ask you to fill in forms for getting adaptations etc they ask for my wife’s income, they asked for my income, they asked for my son’s income, they asked for my daughter’s income. What relevance is… the stance I’ve always had is: my wife is a person in her own right. I choose to do the caring and I… when I’ve had problems with caring I’ve always taken that stance. My wife knows I wouldn’t leave her high and dry. However, she’s an individual in her own right. I do the caring through choice, other people are paid as a job to do it and therefore I’ve always said, ‘Do your job.’ Whatever I do is a bonus.

We shouldn’t have to fight like this. But you’ve got to fight it. And you’re an individual, you have rights. The person you care for has rights, as an individual. And you don’t have to do what they say: [if] the rules need changing, argue and change the rules. There’s people out there to help and there’s loads of information on the web. The form filling… I got mine from a council in another part of the country about how to fill forms in, saying just fill it in for the person who’s claiming the benefits, the rest of you it doesn’t matter. 
 

Paul found evidence that steroids could be given as tablets rather than through a saline drip in hospital. The consultant agreed to try it, with good results.

Paul found evidence that steroids could be given as tablets rather than through a saline drip in hospital. The consultant agreed to try it, with good results.

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My wife, when she first started off used to have to go to hospital to have a…the saline drips for the steroids. I looked it up on the internet and there were some research done, Austria or somewhere it was, about giving it in tablet form so you didn’t have the trauma of going to hospital, because with MS it’s tiring. First of all, you used to have to go for three days over a three day period. Then we changed to a different hospital authority, same consultant because we wanted to stop with the same guy because we do rate him very highly and…but that health authority did it where you came for days. Even so, to someone with MS, it’s the fatigue and all that that can be detrimental. So I looked at this. It said you can give it… there’s some research been done where they’ve done it by tablet form over reducing dosage over the week. So, I mentioned this to the consultant and he said, ‘I’ve not read it.’ I said, ‘Well I’ve brought you the article, I’ve printed it all out.’ So he quickly scanned it. He said, ‘Do you want to try it?’ I said, ‘Yes, please.’ And so we tried it. And it worked for her. He’s now using it on other people. Because they’re busy people and anything you can give to help them… and it might not work for everybody but if you find something, or…I’m a great believer…that’s why I’m doing this, is because if it works for us it might work for you because there’s no answers with MS. Everyone’s different. Treatments are different. Try it. But that’s what I say, everybody’s different. You’re an individual, the person you’re caring for, your loved one’s an individual. Don’t be put… allow anybody to put you in a box. And share information with other people. The web’s a great place for doing it. Find the information and ask. 
 

Paul and his wife, who is now profoundly disabled, are both passionate about watching rugby. They follow their local team to many destinations, with the active support of the club.

Paul and his wife, who is now profoundly disabled, are both passionate about watching rugby. They follow their local team to many destinations, with the active support of the club.

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One of the things we’ve got… we actively support a team and we go all over with that team. The people at the club know us. They know what we’re capable of and we’ve even been abroad to support the team even though she’s profoundly disabled. She can’t use her arms, she can’t use her legs and it’s all lifting. They help us lift her on the coach. The Chief Exec of the team helps us lift her on the coach. We go out. We’re aware of it, anything that’s on. The club is fantastic about it, providing you talk to them, and they know us.
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