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Kate

Age at interview: 75
Brief Outline: Kate’s husband has had MS for 50 years but has only received a diagnosis in the last few years. They have received more support in recent years, but Kate is critical of the organisation of health services in their area.
Background: Kate worked as personal assistant to a head teacher before retirement. She is white British, married with two children.

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Kate’s husband has lived with MS for 50 years, though he has only in the last few years received a diagnosis. His first ‘attack’ as Kate calls it, came when they had been married just a few years and before their two children were born. Suddenly and without warning, he went completely blind. It was six months before his vision returned, but with loss of depth and perspective. He declined the offer of surgery to the optic nerve which carried a high risk of leaving him paralysed. Subsequent attacks came roughly every three years, and each attack took something away, affecting his arms, legs, feet (always felt as though he was wearing thick socks) and sense of taste. He took some medication for about one month to relieve Parkinson’s-like symptoms (shaking hands) but when told he would need to take it for the rest of his life, he decided to do without. Since then, he hasn’t had any medical treatment for MS. 

In the last four of five years, coinciding with their move from a fairly isolated part of the countryside into a small town, Kate’s husband has been given a diagnosis (based, apparently, on his symptoms rather than on any investigations). He has also been referred to the MS Nurse and to a local MS Therapy Centre, where he goes weekly for massage and reflexology. Kate has noticed remarkable improvements in his symptoms over the two years he has been having reflexology. His hands no longer shake, he can stand more securely, his feet feel warm for the first time in years, he has lost the feeling of permanently wearing socks and has regained his sense of taste.

Although they have received more support in recent years than ever before, Kate is critical of the organisation of health services in their area and in their GP practice. She feels that, as older people, their health and well being should be a matter of concern to health professionals and that an occasional phone call, if not a home visit, would be helpful and reassuring to them. 

Kate describes her husband as ‘academic’ and talks about the professional success he achieved, from a young age, as the head teacher of two schools. A move to the second school led to a serious attack of symptoms, which Kate believes was caused by the stress of a geographical move, heavy responsibilities and an unsupportive Chair of Governors. Ultimately, and after the MS started to affect his short term memory, Kate’s husband felt forced to take early retirement from work at the age of 50.

Kate’s life is fully occupied in caring for her husband, but she does not think of herself as his ‘carer.’ In fact, she objects to having that word applied to herself. She describes herself simply as his wife, having married him because she loved him, not to care for him.
 

Kate is quite critical about the lack of backup for when carers are ill.

Kate is quite critical about the lack of backup for when carers are ill.

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I have one or two gripes really about what goes on. He had a terrible fall off a wall here, let me think, three years ago, and it all came at a terribly bad time. I’d just been, I’d actually been diagnosed with breast cancer and I’d been out of hospital after losing half my breast for just over a day, and he fell off the wall. I now realise of course it was stress. He was worried about me. But I somehow did pick him up. And I thought he’d broken his neck because he’d fallen between two... And because I was ill myself I wasn’t really thinking straight, otherwise I’d have got an ambulance out. But I didn’t. So I managed to get him in to the house. And we had no co-operation off the doctors whatsoever. I was appalled actually. They just sent round some, well, I did actually phone them and say he’d had this fall and they said, “Oh, just let him go to bed” you see. 

And they didn’t seem to associate the fact that I was they didn’t re-, I don’t think they ever read anybody’s notes actually, I’ve come to the conclusion. That I actually wasn’t supposed to be really doing much at all because I’d only just had quite a serious operation, and I was trying to look after him, sort myself out. And they sent some, some locum doctor round. He said, “Oh, I should just take a couple of paracetamol if I were you and you’ll be all right.” 

Now we have now discovered that, that fall, he has just recovered from. And all through the time I was going for chemotherapy and radiotherapy we were, I was having to drive. I shouldn’t have been driving, but I couldn’t leave him behind because I can’t leave him in the house on his own. So it all became, and at the same time my sister wasn’t here who, she was away for quite a long time, so I’d got no one I could call on at all to help. 

And that’s where I think a lot of the systems fall down. There is no, my biggest worry is always being ill. And I think most carers have the same problem. Our biggest worry is what happens if we are ill. And there is no backup from the medical profession whatsoever for this. And I think there should, I actually think there should be. I think the medical profession are at great fault here, that they don’t realise that the person looking after that person can be ill and need some help. And I, and this is really a serious worry. I mean we’re old, we’re well into our 70s now, and it is becoming quite a serious worry. 

And the really nice people actually were the cancer people. When I told them that I had a husband with MS, they fast-forwarded my operation straight away. They said, “Right, we’ll get you done straight away. And would you like us to make arrangements for your husband to go into care?” And I couldn’t do that actually because I knew, I just knew it, I just knew it might finish him off actually, the shock of me being ill. Because he was shocked. And because I’m quite healthy. I don’t get ill very often. And I just think it, it wouldn’t have done him any good. So I said, “No, we’ll manage.” Now somebody surely could have sent someone round to see. Surely somebody in our own medical practice, because the cancer specialist must have told them, could have organised something. But they didn’t bother. And I think they’re at great fault.
 

Kate doesn’t feel that she has much time for anything except household chores, but she enjoys gardening, decorating and sewing.

Kate doesn’t feel that she has much time for anything except household chores, but she enjoys gardening, decorating and sewing.

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When you’re not gardening, medication-giving, everything else that you’ve talked about as forming your life, are there things that you can do for your own pleasure and relaxation?

Not a lot. I, because I’m a keen, we’re both, both keen gardeners actually. So that is a relaxation. In fact while I was waiting to pick you up today I was trying to read a book I’ve been trying to read now for, let me see, about a month. Because I don’t very often, I mean I used to be a great reader. Now I don’t. I don’t have, I have more time now than I used to have obviously, but time just goes. 

I like to sew. I do, do some sewing, gardening. I used to walk a lot, but then we don’t walk as much now because I have to get, the buggy has to come with us. So, so we only, we only go, we can’t go to the nice places we used to go because the buggy doesn’t go on nice places. So then you think, “Oh” you know. 

But occasionally, there again, occasionally I, I mean we have, we have a very nice life. I and my, my sister and brother-in-law, we’ll, we’ll, we’ll walk from [place name] to, to [place name], which is just down here. My brother-in-law will pick up Bernard and we’ll go for a meal to, on the beach there. So we’ll walk across the top of the cliffs. 

And, and since, and, and since we moved here I don’t walk as much because I, we lived in a very isolated spot and it was nice. And I, I, we had a dog, who unfortunately died, and I used to have to get out to walk with him. So that makes you walk. And much as I’d like another dog, we can’t really have one. Too much now. We’re too old, it wouldn’t be fair, and too much now, another dog. So that’s another chip off your life, one thing less. 

But, no, I don’t consider really, I like gardening and I don’t consider it a chore. And I do all the decorating and that takes time. I’m always running round with a paintbrush. So it’s one of those things. And I like doing that actually. And I use the computer a bit, not a lot. I speak to the girls on Skype. I’m not a great computer person. I don’t spend hours on the computer. I just go in to websites when I need them. You know, I don’t spend hours on the computer like some people. That’s a bit too inactive for me, boring. I don’t know how people spend the time on it.
 

Kate includes her husband in family outings but occasionally goes shopping just with her sister.

Kate includes her husband in family outings but occasionally goes shopping just with her sister.

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You mentioned that, while we were talking earlier, that your sister lives nearby, and you referred to her once as we were talking just now. Could you say a bit more about how much time you get to spend with your sister, what your relationship has been like there over the years?

Well, we’re very close as sisters. Although there’s a big age gap we are very close. I have a brother, but he lives, he lives in [place name]. Yes, we do, we make a point, we all meet, she, she lives the other side of the river from us, which is only about five minutes away, but it’s the other side of the river. And we always meet on a Saturday morning in [place name] for coffee, all of us, my sister, and Bernard comes as well. 

I don’t go anywhere, I don’t, the other thing I don’t, I try not to do is to say to Bernard, “You can’t, no, I’m going on my own, you can’t come” or like when we’re going shopping, you know, “Just sit here.” I will say, “Come.” I, you know, I have to get the buggy. We have a motorised buggy which fits in to the boot of our car quite well, and I have to get that out and put it together and sometimes I think, “Oh, a bit of a drag, this is.” But I, it sounds awful, I hope, I hope he never sees this. But I don’t ever want to be in that position where I say, “No, don’t bother” because it’s making me, it’s inconvenient for me. I don’t make him an inconvenience. 

And I like him to come, I like him to mix with the family. It would be easier to say to him on Saturday, “Well, look, I’m just going to go and have coffee with my sister.” And but we don’t, we all go, her husband comes and my niece actually as well, she often pops in. And, and occasionally we, my sister and I meet up and go to [place name] for a shopping expedition. And then I do feel I can leave Bernard for half an hour, well, more than that, for half an afternoon. I say to him, “Have a rest” and he’ll sit and just listen to music. He’s quite happy to do that.
 

Kate feels that there is not enough ‘backup from the medical profession’ for older carers who become ill themselves.

Kate feels that there is not enough ‘backup from the medical profession’ for older carers who become ill themselves.

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I have one or two gripes really about what goes on. He had a terrible fall off a wall here, let me think, three years ago, and it all came at a terribly bad time. I’d just been, I’d actually been diagnosed with breast cancer and I’d been out of hospital after losing half my breast for just over a day, and he fell off the wall. I now realise of course it was stress. He was worried about me. But I somehow did pick him up. And I thought he’d broken his neck because he’d fallen between two. And because I was ill myself I wasn’t really thinking straight, otherwise I’d have got an ambulance out. But I didn’t. So I managed to get him in to the house. And we had no co-operation off the doctors whatsoever. I was appalled actually. They just sent round some, well, I did actually phone them and say he’d had this fall and they said, “Oh, just let him go to bed” you see. 

And they didn’t seem to associate the fact that I was, they didn’t re-, I don’t think they ever read anybody’s notes actually, I’ve come to the conclusion, that I actually wasn’t supposed to be really doing much at all because I’d only just had quite a serious operation, and I was trying to look after him, sort myself out. And they sent some, some locum doctor round. He said, “Oh, I should just take a couple of paracetamol if I were you and you’ll be all right.” 

Now we, we have now discovered that that fall, he has just recovered from. And all through the time I was going for chemotherapy and radiotherapy we were, I was having to drive. I shouldn’t have been driving, but I couldn’t leave him behind because I can’t leave him in the house on his own. So it all became, and at the same time my sister wasn’t here who, she was away for quite a long time, so I’d got no one I could call on at all to help. 

And that’s where I think a lot of the systems fall down. There is no, my biggest worry is always being ill. And I think most carers have the same problem. Our biggest worry is what happens if we are ill. And there is no backup from the medical profession whatsoever for this. And I think there should, I actually think there should be. I think the medical profession are at great fault here, that they don’t realise that the person looking after that person can be ill and need some, some help. And I, and this is really a serious worry. I mean we’re old, we’re well into our 70s now, and it is becoming quite a serious worry. 
 

Kate hopes for the best, but she does worry about the future. Her husband doesn’t like to talk about it and she says that ‘like a lot of people we shove it to the back of our minds’.

Kate hopes for the best, but she does worry about the future. Her husband doesn’t like to talk about it and she says that ‘like a lot of people we shove it to the back of our minds’.

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You have both talked about being older now and, and having some anxiety about the future. Do you actively think about and plan for the future in any way?

Well, how far can you plan in to the future? Obviously neither of us want to go into homes. Bernard’s income is such that he would be, I think, all right. He could get people in, if he had to look after him if I died. I have no income at all because I’m of an age where pensions weren’t, although I had quite a high-flying job for many years as, there were no pensions involved. 

I have my own mental plans what I would do if Bernard died first. I would probably sell up and either go to my children or buy a flat somewhere. Because I would have no income I, although Bernard’s been head of a school for a long time I only get a third of his pension and that l-, because when he retired, everybody thinks pensions for teachers are a lot of money, when he retired they were not a lot of money. So we have quite a restricted, so my, a third of his pension wouldn’t be a lot of money. And I think my own, I think my own state pension is two hundred and something pounds a month or something like that. So I don’t think I’d do very well on that. 

But I do not intend to become an old lady who has to worry whether she eats or turns the heating on. I shall have to, I shall have to find another way round things. We just have to hope for the be-, you know, just hope and see what happens. I do worry about him, I do, the older we get I do. Bernard doesn’t like to talk about it because I think it, and I can’t talk to, that’s another thing, you see, I can’t talk to him about it because it upsets him. So I, so I suppose like a lot of people we shove it to the back of our minds. 
 

Kate thinks that health and social care workers should phone or visit elderly people with serious conditions occasionally to check that ‘everything is all right’.

Kate thinks that health and social care workers should phone or visit elderly people with serious conditions occasionally to check that ‘everything is all right’.

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Well, I think re-, really from what I’ve said that, I think if they have a person that has any serious illness, not just MS, any serious illness, there are plenty of people with serious illnesses of varying sorts that can’t do anything, and, and the carer is there living, living in the house and looking after them, I think that they, they should take that into account and, and realise that just a phone call occasionally or even, I know they won’t do home visits, but it, I think there are times it wouldn’t hurt them to do a home visit and just say, pop in and say, “Is everything all right?” 

Not just for the person that’s ill, who might be going to the doctor’s, I mean Bernard doesn’t, but a lot of people do go to the doctor’s, but the person that’s caring never goes to the doctor’s. And, and because they didn’t realise, realise when I was ill, nobody seemed to put two and two together that there were two of us quite ill, quite ill in the house actually. Nobody bothered to come. And two el-, I mean we were both in our 70s then, two elderly people in the house with no one bothering what was going on. And I think that ought to be looked into. I seriously think that ought to be looked in-, not just for my benefit. 

I’m lucky, I’m fairly he-, as you can see, I’m fairly healthy. But there are a lot of people of 70-odd that are not as active and healthy as we are. And I, and they are left, as long as nobody moans, they’re left to get on with it. And, and I do think that’s wrong. I know there’s no money, I really understand there’s no money, but they can find money for all sorts of other things. They could at least scrape together at least one visit every six months. 
 

After living with MS for more than 25 years, Kate’s husband was diagnosed when they moved house and changed their doctor.

After living with MS for more than 25 years, Kate’s husband was diagnosed when they moved house and changed their doctor.

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And we went to, we went to three, I’ll never forget this, three different doctors to find out if Bernard could retire. What was the matter with him? No, obviously still no, we still didn’t know it was Multiple Sclerosis. Nobody knew even then, twenty-five years ago, it was Multiple Sclerosis. And the do-, the one doctor said, “Oh, well, I think you’re just having a nervous breakdown.” And I said, “Can’t you..?” I was absolutely, fortunately I was with him, because he, Bernard will never say anything to anyone, will never complain about anything, and I said, “Can’t you see?” I said, “He can’t even fasten up his shoes. He has no co-ordination to fasten up a pair of shoes.” Which he couldn’t. 

And, and actually at that time he couldn’t even get food to his mouth. We would sit at table for ages trying to look normal, all four of us, as he would miss his, , miss his mouth with his food and we’d try to act as if it was quite normal to miss your mouth with your food when you’re eating. And eventually I made this doctor realise how ill he was. And he said, “Oh, I think you’d better take early retirement.” Which was a great relief to us. And really from there we, we’ve managed on our own.

The doctors had never seemed to realise what it is, until we actually came to live here. And that was, I mean we lived on the [place name] for, for many years. But when we came to live here, one young doctor was, was, was, well, yes, one young doctor was very good and said, “I think you ought to go and see a Multiple Sclerosis nurse. You have Multiple Sclerosis.” Well, we knew it was sclerosis of something, but we didn’t know. And we have been to see a specialist here who deals in Multiple Sclerosis. And he did say to Bernard, I must say we went privately because the doctor at the [place name] was, he did say to Bernard, “Well, you’re better off making, not taking any medication. Because you’re managing so well without it.” He said, “And the side effects of medication will be worse than the actual managing.” 

So, and then this young doctor suggested that he, that he went to see an MS nurse. And from then on we’ve had a tremendous amount of help. And I’ve learnt more about, in the last five years since we’ve been here, more about Multiple Sclerosis than I’d known in all the years. Now I re-, realise lots of things that have happened to Bernard are quite normal for people with Multiple Sclerosis. But it hasn’t been an easy, an easy ride, trying to act normally. 
 

Although she does not ‘gripe’ about money, Kate is annoyed that nobody has explained the system to them and that they haven’t been able to get a Blue Badge.

Although she does not ‘gripe’ about money, Kate is annoyed that nobody has explained the system to them and that they haven’t been able to get a Blue Badge.

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And the other thing I found, we had no, we had no financial help at all. I didn’t know until, until we came to live here that you could get, I don’t know what it’s called actually, oh, what’s it called? Whatever they give people as a Disabled Living Allowance. But we never had any of that. And it wasn’t until a friend of ours said, who, who actually was in the RAF, who did something in the RAF, they, they said, “You know, you really could get Attendance Allowance. Have you ever tried for that?” So we did. So we have, we are fortunate, we’ve had Attendance Allowance for 4 years. Which really, but really, Bernard really should have had Living Allowance. But nobody, nobody ever tells you, nobody tells you these things at all. 

We’re lucky, Bernard has a pension. We never consider ourselves, we, our, our, our, obviously all our savings go. We don’t, we can’t save for our old age because we’ve lived on a pension for so long. But we live, we live well, so we don’t complain. But we don’t get anything. 

I’m not griping about money really, because I know it’s short. I do gripe about the fact that some people seem to be able to get cars and things. I don’t know how they do it, but they do it. And they can seem to, here parking is extremely expensive, but we always have to pay for it because Bernard doesn’t have this special, but I suppose it comes with the Disability Living Allowance. 

I do know that when I was talking to a man in the car park, he, actually because I put the wrong money in, I said, “Would you like this ticket? Because I need it for longer.” And he said, “Oh, I don’t have to pay.” He said, “My wife’s got MS, you see.” So I said, “Well, my husband has, but we still have to pay.” And he said, “I don’t understand that.” In any case I didn’t bother to argue because I didn’t, it’s not worth fiddling about with it. So, but actually she walked past the car better than Bernard did actually and I thought, “Oh, well, you know, there must be something in this if they can get it.” But we can’t get it. 
 

Kate rejects the idea of herself as her husband’s carer. She says they’ve had a long, loving life together as husband and wife and she doesn’t consider what she does to be ‘caring.’

Kate rejects the idea of herself as her husband’s carer. She says they’ve had a long, loving life together as husband and wife and she doesn’t consider what she does to be ‘caring.’

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And I’ve never really considered it caring. I still, I actually still object to the word, to the word carer, very much so. And when people say to me, “You’re his carer” I say, “No, I’m not actually. I’m his wife. I’ve been his wife for a long time.” So we don’t look at this as caring at all.

I didn’t marry my husband to care for him. We married each other because we loved each other, not to care for each, and we married each other, and I know it sounds old fashioned, but for richer or poorer, and better or worse, and in sickness and in health. We got the one bit of it. But we’ve had a, we’ve had a long loving life. So I’m not, I don’t consider it caring. And I get really offended actually if people say to me, “You’re his carer.” I’m not actually. I always say to them, “I’m his wife. I‘m not his carer.” I suppose I get offended about this partner business as well. I know it’s all politically correct. But I, if they, they say to me, “Your” you know, “Have you got your partner?” I say, “Well, actually I haven’t got one. I’ve got a husband.” I suppose I’m a bit bolshy like that. Well, I just object to it. I didn’t marry somebody to care for them. I don’t, I actually don’t consider I care for him. I probably do. I mean, he would do a lot more for me if he could, I know he would. And he does what he can for me. So you just do what you can for each other. You know, you don’t, you don’t, you just, that’s life, isn’t it? You just, it’s how the cookie falls, isn’t it, really?
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