A-Z

Kay Z

Age at interview: 49
Brief Outline: Kay’s husband has secondary progressive MS, initially diagnosed in 1993. Kay describes herself as her husband’s primary carer, supported by a large network of friends and by good health and social care services.
Background: Kay, age 49, works part-time as an operations manager for a local church. She is white British, married, with two teenage children.

More about me...

Kay’s husband was diagnosed with relapsing remitting MS in 1993, following investigations for a limp which they both thought was due to an old sports injury. Hearing about an episode of double vision 10 years previously, though, doctors confirmed that he had MS. Kay had seen people with MS and was shocked at the diagnosis, imagining the worst. In fact, there were not too many problems at first, beyond some difficulty walking. 

But before long the impact became greater with unpredictable attacks of overwhelming tiredness and other symptoms (slurred speech, loss of balance, urgent need for the toilet) occurring a couple of times a year. This was very alarming to Kay and to their two young children and Kay felt quite isolated, feeling that other people didn’t really understand the extent of the day to day problems they were facing. Information provided by MS charities was invaluable, including advice on finances, how to deal with your employer and what to tell other people. Kay had a big role in communicating their circumstances to their immediate and extended family (her husbands’ family all live abroad and were not able to experience directly what his condition was like).

The illness has developed over time to the secondary progressive stage and Kay’s husband took early retirement from work in 2007. Kay works part-time, leaving enough days in the rest of the week for her commitments to helping her husband and for domestic work and family life. They had moved house in the earlier phase of the illness, as Kay anticipated her husband’s needs to be able to live on one level. Kay describes herself as a practical, organising person who likes to keep one step ahead. For example, in designing changes to their front garden she wants to create a space for a motorised scooter, anticipating a time when her husband may be less mobile than he is at present.

They have received good care from health and social services over the years and Kay also has the support of a large network of friends. She is able to go away for week-ends two or three times a year, which helps (along with her weekly Zumba class) to avoid the potential emotional burnout that can come with the role of carer.

 

Kay talks in detail about how to apply for Disability Living Allowance.

Kay talks in detail about how to apply for Disability Living Allowance.

SHOW TEXT VERSION
PRINT TRANSCRIPT


I think we got signposted to the possibility of Disability Living Allowance through one of the factsheets that were available at the hospital. And so we contacted the direct.gov website, which, which had the forms and the instructions on how to do that. Huge form, I mean pages and pages of it. Quite a challenge. But fortunately because of our work background that didn’t put us off. And, and, but there are people out there who will help you fill out those forms if you do need help. And it was a question of just answering questions about how far you could walk, how long it took you to do that. So we went out on to the pavement and measured a certain number of metres and got the stopwatch out. You had to have a, a little summary from your GP about your symptoms. And I think they measured you on a sort of scale of disability. There’s a measurement which is used across the medical profession so that different doctors can assess a patient’s level of ability or not on a, an objective measure. Then there was a long wait, a long wait, whilst you were assessed, the paperwork was dealt with. But the good news is that once you were successful the benefit was backdated to the date that you’d originally applied. So, so it felt like a little bit of a Christmas present almost when we got the letter to say, “Yes, you were entitled” because that came with a back payment. Now it just gets paid every four weeks directly in to the account and it’s a very straightforward procedure. You don’t have to be accountable as to how you spend that money. It’s just there to facilitate you doing what you need to do from time to time. It’s not taxable. Which is also helpful and keeps life simple.
 

Kay’s children have ‘grown up with’ their father’s MS and have ‘seen the plusses and minuses.’ They have also learned that, ‘we are not a normal family.’ But Kay thinks they have adapted, and ‘created their own normal.’

Kay’s children have ‘grown up with’ their father’s MS and have ‘seen the plusses and minuses.’ They have also learned that, ‘we are not a normal family.’ But Kay thinks they have adapted, and ‘created their own normal.’

SHOW TEXT VERSION
PRINT TRANSCRIPT
I think that MS has a massive effect on the family at large. It’s not just the person who has the condition. And I think this was particularly so when you have a young family. Typically, that is the stage of life that people are going through as they receive their diagnosis. So information about people’s experiences on what and when they shared the facts with their children, how they did that, was very useful. 

Personally, we’ve always found being completely honest and upfront with our children has been the way to go. Just to drip-feed them the amount of detail that they need at the time. You know, starting from, “Oh, Daddy’s brain doesn’t talk completely properly with the rest of his body” you know, very simple, through to my older daughter when she got to sixth form was thinking that she would write an extended paper on MS, because it was something that she really felt she wanted to dig down deep about, find out more. 

So it’s something that they’ve grown up with. And, and they’ve seen the plusses and the minuses, and hopefully have become tolerant of other people who struggle with other diseases and, you know, who, who might have circumstances that impact them more than theirs do. But they’ve also learned that, you know, we are not a normal family. You have to admit that. And, and often you, the human nature is amazing, you adapt and you create your own normal. You really do. And it’s only when you step out of that, out of your normal routine, out of your normal environment that you suddenly realise how different your normal is. 

Typically that would happen to us when we went on holiday, especially if we were on holiday with a group, you know, meeting family from abroad or something like that. You suddenly realise that things that to us are completely second nature and normal are absolutely foreign to most people’s experience. It wouldn’t matter to most people whether the restaurant that you were going to had steps in it. But to us it would make the difference whether we went or we didn’t. Or, that we would book a table at the back of the restaurant rather than overlooking the beach, just so that we didn’t have to avoid the steps. You know, it matters whether the, the toilets are on the same level as the tables in the restaurant or whether you have to get up and down a flight of stairs to get there. And most people don’t have to think like that at all.
 

Kay talks about the tension between being a ‘wife’ and a ‘carer’.

Kay talks about the tension between being a ‘wife’ and a ‘carer’.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Being a carer does have an impact on your family relationship, definitely. I have found it very difficult to function as a wife at the same time as being a carer. And with a chronic condition and particularly with a progressively debilitating condition, your role as carer comes more and more to the fore as time goes on. And I would say that I am less of a wife. I see myself less in an emotional role, supporting as a normal wife would, and more of a carer. I’m a very practical person and so possibly that has driven me in that direction. 

So, you know, I don’t have any problem with clearing up after an incontinence issue or something like that. I go into practical, carer mode. It’s a struggle. I think there was a transition time when I was trying to do both equally well, but I realised I couldn’t keep it up. And so I sort of accepted in my own heart that actually he needed a carer and it was more important for me to be that carer than anybody else. And so I accepted that role. 

But love’s a funny thing. You know, it goes through different chapters anyway the longer a relationship goes on. But I see my demonstration of love as being commitment at this point that, you know, we’ve been married twenty-three years, eighteen of which he’s had MS, and I’m still there, hanging on in sort of thing. And so, you know, that’s my way of commitment to my marriage. But it looks very different from an ordinary marriage.
 

Kay’s health is good, apart from a strained back. She exercises regularly and also looks after herself emotionally to avoid, ‘burn out.’

Kay’s health is good, apart from a strained back. She exercises regularly and also looks after herself emotionally to avoid, ‘burn out.’

SHOW TEXT VERSION
PRINT TRANSCRIPT
There was one time, I, I strained my back because I’d been nursing [name] and I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.

Reference to a strained back reminds me to ask about your own general health and how you keep healthy and fit?

My own health is actually very good. I’m very blessed. Apart from having strained my back from trying to lift in a way that was probably not a sensible idea, my general health is good. I’ve borrowed my husband’s physio from time to time to have treatment on my back. He is again very supportive and appreciates the different roles that he plays in treating my husband for his MS and keeping his body mobile and treating me in a more holistic way as a carer. 

I think it’s more to do with emotional health and psychological health that I need to be really careful about looking after myself. Because the routine would tend towards burnout. The longer you care, the more your role increases as a carer, the more likely it is that you will burn out. So I do have a weekly Zumba class, which I’m passionate about. I think Zumba is fantastic. It, it really works you out hard and it’s actually quite therapeutic, I think, to do that. There’s a real good feel-good factor afterwards. 

And just time away from your living environment is important. I try and go away two or three times a year maybe, just for the weekend, to leave it behind. I think that’s important. Mums don’t get sick, so, you know, to a large extent you just battle on through. I think another thing though is just learning to accept a different standard for yourself if you are going through a period of, of strain. You know, the world will not come to an end if the kitchen floor doesn’t get cleaned for a month. Whereas I would aim to have my house looking clean and tidy and, you know, all the laundry up to date and all the rest of it. 

But you just have to prioritise. And sometimes you go through phases when you’re just surviving and, but to just let yourself, don’t beat yourself up about that. That’s fine. Other people don’t know what you’re going through. You know, whatever it looks like on the outside doesn’t necessarily reflect the reality of your day-by-day situation. So, yes, give yourself a break, on all sorts of levels.
 

Kay thinks about how her husband’s symptoms have changed and plans for the future on that basis.

Kay thinks about how her husband’s symptoms have changed and plans for the future on that basis.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I think from my perspective as well I went very much into the mode, and I still do this, of trying to be one step ahead all the time. I am by nature a, an organiser and a planner, so that comes to me quite naturally, but I like to imagine, “Okay, where will we be in twelve months’ or two years’ time? What will our needs look like then?” Because I think by trying to be that one step ahead you, you can smooth out the lumps and the bumps to a large extent. 

For example, the big ones were, you know, “Where should our children go to school?” because they needed to be as independent as possible, rather than relying on me to do a school run here and there and everywhere. Because I might not have the capacity to do that, depending on what my husband’s needs were for care. 

Or moving house. Originally we, we lived in a town house where the sitting room was up on the first floor and my husband’s bedroom was on the second floor. And when mobility has become an increasing problem, that clearly needed to be changed. So we, we spent time trying to move house, even though we didn’t particularly want to move house, just because we knew we’d get to the point where we needed to be living all on one level. He’s now living in a house which has given him the opportunity for a downstairs bedroom, downstairs bathroom, a kitchen which is very easy to access without a lot of doors to open and shut, and a living room that opens straight on to the garden, where, which we’ve got on a single level. So you can minimise a lot of the problems if, if you have the time and the ability to plan ahead like that.
 

Kay talks about the importance of getting support and praise from her friends.

Kay talks about the importance of getting support and praise from her friends.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Also, we have a huge, well, I have anyway, a, a network of friends that I can rely on and just ask for help from. And that is a valuable asset. It really is. There, there are, you know, a handful of friends that are just always there for me. They, they, they praise me, they tell me I’m doing a brilliant job all the time. And, and that actually does matter. Because there are some times when you think, “What’s this all about?” and it’s a very hidden role and all the rest of it. But to have places that you can just go to for a weekend and they’ll just fuss over you and spoil you is, is very important. Yes, and people who are actually concerned about, “How am I?” rather than asking, “How is he?” Because everybody wants to know how he’s doing and, and send their love and all the rest of it. Which is great and, you know, it’s important. But there are those times when you just think, “Well, actually he’s fine. What about me?” Because, you know, you’re doing all the cooking, shopping, driving, parenting, gardening, finances, the lot, and, and that’s hard work. So it, it, identifying those people who will be your biggest fan, quite apart from your mother, who’s obliged to be your biggest fan, is, is really very important.
 

Kay and her husband have different approaches to imagining the future, which causes some tension between them. She deals with this by focusing on specific, practical things which will make their life easier.

Kay and her husband have different approaches to imagining the future, which causes some tension between them. She deals with this by focusing on specific, practical things which will make their life easier.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Looking ahead to the future is obviously quite a sensitive area. Because it’s a bit like talking about somebody, we all know we’re going to die one day but we don’t like to talk about it too much. In the same way as MS is a progressive decline and, you know, statistics are going to say that he will end up in a wheelchair and become more and more dependent. It’s not an easy subject to talk about. But I think the way we deal with it is that it’s always me that initiates those conversations, and I try to deal with it by isolating something specific, so that we’re making a decision about one thing, one step at a time. 

For example, at the moment we need to landscape our front drive, which is a mess. I would like to include in the design for that an area where we would park a mobility scooter, you know, one of the little electric scooters. Not that he needs one right now, but let’s think ahead that the time will come, probably quite soon, when he does want to use a, a mobility scooter to get out and about and we will need somewhere to keep it. So I can talk to him about something very specific like that, which is only necessary because he will become less independent. But it’s not quite so in his face, because we’re talking about something really specific and practical. But it’s taken me a couple of years of living in this place before I’ve felt that he is ready to anticipate that that time will come. 

We seem to go through phases where you have a plateau of what’s your normal routine and then you go through a transition phase where you, you prepare for the next chapter. And then the next chapter starts and you have a, a different normal, where you are less able. But ironically those chapters are easier than the transition period and the run-up. So at the moment I say we’re in a transition period, we’re planning ahead, we’re, we’re imagining how we can make life easier for the future. And that feels quite difficult. But once we get there, it, it will go so much more simply and, and seem so much more normal and, and, and everybody will just get on with it. It’s strange, it’s really bizarre actually.

In what way bizarre?

Well, my husband finds it really difficult to hypothesise. He you know, he can’t imagine what it will be like when the children have left home, for example. This, this is just his character. It’s nothing to do with his illness at all. He whereas I find it really easy to imagine the future and, and h-, how I’d feel about it. And, you know, not that I always get it right, but that comes as a very natural thing for me to do. 

And so there is a tension between us when it comes to dealing with the future. Because he, he deals very much with what’s in front of his face now. So it, to the outside world it probably looks like I organise his life, I almost make his life happen for him in a sort of controlling type of way. But it’s not that at all actually. It, it’s just me being several steps ahead, so that when his, when the time for change comes it’s a step-by-step thing rather than a dramatic thing. Different skills, different strengths, different personalities, but you work it out somehow.
 

Kay and her husband have had good experiences of health and social care. She thinks that might be partly because they come from a professional background.

Kay and her husband have had good experiences of health and social care. She thinks that might be partly because they come from a professional background.

SHOW TEXT VERSION
PRINT TRANSCRIPT
I think as far as health and social care is concerned we have had a very good experience. Everything from the ambulance man to the specialist top consultant, we’ve been very fortunate. I do wonder sometimes whether that has been made easier because we’re sort of almost talking professional to professional, we’re coming from the same sort of background. And certainly it would be harder for people who perhaps didn’t understand their symptoms or their disease in the same way as, as, as we’ve been fortunate to be able to do, to be able to communicate and really understand what the doctors were saying. 

By and large I think the doctors do a great, a great job. The hardest thing that we’ve found has been silence. And I, I know there are people who don’t see their doctors as frequently as we do, for example. We have six-monthly check-ups, almost whether he needs them or not. And that’s really helpful because you can, you can make a list of your questions and, and every six months you get the answers. Whereas I know my cousin, who was recently diagnosed with MS, was just left high and dry. No future appointment made for follow-up of any sort. And that seemed particularly difficult because she was late onset. She wasn’t diagnosed until she was in her 40s. 

So I think silence is the hardest thing to cope with. And so, being proactive, you can find the answers to your questions. But I think there’s a really important role for the health service to, to keep signposting people to what else is available. Even, you know, like the, the local charity gave us a signpost towards the taxi card scheme to help subsidise transport. We didn’t know about that; that’s a really practical help. Yes, “Just keep talking” is the most important thing.
 

Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.

Kay has never regretted asking for help, though it can be hard to do when you see yourself as a capable person.

SHOW TEXT VERSION
PRINT TRANSCRIPT
Nobody need travel this alone, but you have to swallow your pride and say, “I need help” and, and find the people that are there for you. So many people will say, “Oh, you know, you know you can always call me” or, or, you know, “Don’t hesitate to give me a ring if there’s anything I can do.” And that in itself is, is helpful. But it’s not half as helpful as actually calling their bluff and asking them for help. 

And ironically, the more capable you are as a person, the harder that becomes to do. But I’ve never regretted it when I have asked for help. Because people actually see it as a compliment that you, you trust them enough to be vulnerable with them, to admit that you need the help. 

Like, you know, there was one time, I strained my back because I’d been nursing [name] and, I’d been nursing my husband and I’d overdone it. And so I needed somebody to do the driving for me for a few weeks because I was in too much pain to drive. And the person I asked to do the driving was delighted to be able to help and would have felt dreadful if I hadn’t. So, you know, they really do appreciate you being honest and open, as well as giving yourself time to recover from whatever it was that you needed help with.
 

Kay’s husband did not want to tell his employers about his MS at first, because he didn’t want it to affect his career. Once he told them he received a lot of support from them up to the point of early retirement.

Kay’s husband did not want to tell his employers about his MS at first, because he didn’t want it to affect his career. Once he told them he received a lot of support from them up to the point of early retirement.

SHOW TEXT VERSION
PRINT TRANSCRIPT
One of the big decisions we had to make at the beginning was whether to tell his employers. It was, it was a big decision and initially we decided not to. And in fact it wasn’t until many years later that, that he actually told his employers that he was suffering from MS. Even though he was working for the Civil Service, which is a massive employer and very much in the vanguard of promoting equal opportunity at work and, and those sorts of things, he didn’t want his career to be in any way affected by perceptions from his employers. 

As far as his employment was concerned, as I say, we went for many years w-, without saying anything at work. But over time his symptoms, instead of being sporadic and intense, became more chronic, more constantly with him. And, for example, his, his ability to write, his manuscript handwriting slowed down because of the co-ordination problems. To a large extent that was fine. It didn’t stop him doing his job, because he used a keyboard. But then sometimes on the telephone he wouldn’t be easy to understand because of the speech difficulties, slurring words. And there did come a point where we began to think actually, “This is having an impact on your ability to do your job.” Also, commuting was extremely tiring for him. Fortunately he was able to leave home very early and catch a seat on the train going in to work, and then leave early so he had more of a chance of getting a seat on the train coming home. And we did live at the terminus, at the end of the line. Which really helped. But again we reached a point where the, the exhaustion factor meant that he really didn’t have any life because of, of having to continue in that work. 

So he did tell his employers, who were absolutely wonderful about it, and they went in to all the right mode about providing him with support. The Disability Discrimination Act was in law by then. So, for example, they agreed he should work from home two days a week, and we did that for quite a while. And then the next chapter was that they would provide a car service to pick him up from home and take him in to London two days a week. So he had increasing levels of support, and, and that was great. But there did come a point in December 2007 where he really couldn’t do the job any longer. It was a, quite a high demanding job intellectually and, and, and he just couldn’t keep up. So he took early retirement on health grounds at that point.
 

Kay and her husband were glad to have beta interferon, although it was expensive to buy it from America, when no treatments for him had been available in the early years of having MS.

Kay and her husband were glad to have beta interferon, although it was expensive to buy it from America, when no treatments for him had been available in the early years of having MS.

SHOW TEXT VERSION
PRINT TRANSCRIPT
As far as treatments are concerned, we’ve always had really supportive GPs and I, and I’ve felt as though the, the consultants that we’ve had access to as well have been really helpful. Initially there didn’t seem to be very much that they could do. And that’s frustrating. Because as long as you’re doing something, you don’t really matter what it is, it just feels as though you’re making progress and, you know, you can have that fight, as it were, against the disease. So the early years were the hardest. 

Then beta interferon came on the scene as a possible treatment. Because my husband has relatives abroad, including New York, we had managed to obtain that privately from America, through his brother, seeing a consultant there, for a number of years before it became available in the UK. Which was very expensive obviously, but it was the right thing to do at the time for us. And when it did become available in the UK, obviously we came back and had it here. That involved injections in to his thigh, which was painful, frustrating, difficult to administer because he wanted to do it himself. I have to say my husband is perhaps the most independent person in the world. And, yes, we were quite glad in a sense when that particular chapter came to an end, because ultimately his body stopped responding. Another example of how you adapt is that you also adapt to treatments, and they become less effective quite often. 
 

Kay works three days a week and although she doesn’t earn much, she really enjoys her job and the chance to have a role which is ‘not remotely a carer’s role.’

Kay works three days a week and although she doesn’t earn much, she really enjoys her job and the chance to have a role which is ‘not remotely a carer’s role.’

SHOW TEXT VERSION
PRINT TRANSCRIPT
I’m currently working three days a week. That seems to suit me fine. It means that I have my own life completely, as it were, my own, my own working experience. It leaves me a day to run around after my husband’s various appointments or needs, which, you know, I do need a day for pretty much. And then a day to do the housework and the domestic side of life, which is for family as a whole. 

My job is very flexible. I’ve really appreciated the fact that, you know, I can switch my working days around appointments as necessary. I only work three miles away from home, so if something unexpected happens I can zip back home to sort it out. I have also had a period last autumn where I was allowed to take a whole month off as carer’s leave, unpaid carer’s leave, just because we were going through a period where I was needed more at home than I could really manage at the same time as working. And just emotionally I was getting a bit worn out. 

I think it’s good to, to recognise that if you do feel you’re getting a little bit burnt out, that you’re not doing anybody any favours to just keep on keeping on. It’s better to stand back, take a break, and then start again. I really enjoy working. I get a lot of fulfilment out of my work. It gives me a role which is not remotely a carer’s role. Which is important to me. So I’m pleased to have the work. Yes, it doesn’t pay anything, but there we are.
Previous Page
Next Page