Multiple Sclerosis: friends & family experiences

Work and MS

Work can be a source of enjoyment and fulfilment as well as for earning money. Many people we spoke to combined work with varying degrees of caring for a relative with Multiple Sclerosis (MS). Some people chose the location, type and amount of work that they did specifically to fit in with their home life and the needs of the person with MS. A job which offered flexibility to have time off at short notice and to attend hospital appointments had been very important for people. Kay Z works three days a week and she is able to switch her working days around her husband’s hospital appointments and other needs.

Some people needed to decrease their working hours in order to look after their relative. Others needed to increase their working hours after they became the main breadwinner. Louise, David, Alice, Karl, Mully and John Y all continue to work full time while giving various amounts of support to their partner with MS. Some of their partners also continue to work.

Karl’s employer provides very good support for carers, including a ‘Carers Network.’

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Age at interview: 40

Sex: Male

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I’m quite lucky, working in the Civil Service, because they’re quite understanding to carers’ needs and there’s a carers’ network at work which is useful for things like support and they have meetings which I go to sometimes and just to sort of be, they’re very aware of our situation and [partner’s name] goes to the hospital once a month and they’re very good at letting me take time off every month to accompany her because at the moment she wouldn’t quite be able to make the journey on her own.

A carers’ network at work sounds very interesting. I’ve not heard of that before. Can you say a bit more about that?

Ah, there’s not much to say really. I mean, they just have meetings every, every, sort of twice a year, and you’ve got a list of email addresses if you ever need anything from anyone or you need to talk about work issues. And so far, perhaps I’ve been lucky that I’ve not really needed work support from them. It’s mainly work related issues that they’re there for; if you’re having problems in your department or the manager is not as understanding as the manager I’ve got at the moment, then they’re there for you for those sort of items, those sort of issues.

Other people choose to continue working even if part-time, and value the variety of experience and perspective that working adds to their life.

Patience went back to work after 10 years of looking after her husband full-time. She enjoys giving her time and skills to nurture others as well as her husband.

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Patience went back to work after 10 years of looking after her husband full-time. She enjoys giving her time and skills to nurture others as well as her husband.

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Age at interview: 44

Sex: Female

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I love working so I’ve gone back to work and I get the benefits. I’ve been working with children before I met my husband. I used to work as a nanny. I work in a nursery school but when I met my husband II stayed home, for nearly ten years because I wanted to get him better. And I thought, “I could change my job to do disabilities and children”. I get, the benefit of it is enormous. So don’t think that oh, your time is just with your loved ones and this and that. You can give it to others as well because those people, they are going to appreciate it. I don’t say your loved one does not appreciate it but when you are with them all the time, we look at it in that way but when you go outside your walls and give it to somebody, I think the smile on their face would make you think that, oh, you feel you need to do it every time. So don’t give up. Just hang in there and it will get better. Then, whatever the reason is, just find your weaknesses and strengths and have a balance.

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.’

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Age at interview: 49

Sex: Female

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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.

Some people who were near retirement age decided to retire early. Bernard and Jeff both retired from their jobs as teachers so that they could spend more time with their wives. Jeff had already given up a senior role and gone down to half time hours a few years before he retired. Eric gave up his job as a driving instructor when he had to start coming home between each lesson to make sure his wife was okay. Norma decided to give up her business as a restaurant owner sooner than she had planned so that she could look after her son:

Norma couldn’t face the thought of leaving her son at home ill while she was working. On the day he was diagnosed she decided to sell her restaurant.

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Age at interview: 70

Sex: Female

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The day that Shane was diagnosed I took him home, I gave him his lunch. I had to leave to go back to the restaurant. Driving there all I could think of is he’s sick and I’m leaving him, he is sick and I am leaving him. The idea when I opened the restaurant was that my children are grown up I’ll just do something for me, something that I wanted to do. However I wanted to keep the restaurant for about ten years, build up the clientele sell it on and retire, that would be me.

But I could not get it out of my head that my son needs me because he is sick.

He is not going into a home and I will not have carers just coming in to look after him and then go. I need to be at home, and I made the decision that exact same day I will be selling the restaurant. I did this about 4 months later. Luckily enough it went through, and I came home and I was very content to do that. There was no way I would have stayed at the restaurant knowing that my son was here on his own, it was never going to happen, so I decided there and then.

Not everybody was able to combine work and caring. Betty had been made redundant before her partner was diagnosed. At first she thought that she might be able get a job but as his health declined quickly she gave up the idea of getting paid work and decided, ‘Right, that’s it: I’ve got to become a carer.’ Mike’s partner was having such frequent relapses that he couldn’t get back to work, although he hopes he will be able to return to work in the future.

Some people decided that they would not pursue work opportunities which could have been very exciting for them, because they felt that they should give priority to the needs of the person with MS. Jeff gave up his senior position in a school for a half time teaching job. Louise stopped running her own business and moved to a company which gave her more support so she was able to do her job and not have to worry about it.

When he retired from the RAF, Tony considered applying for a job in Japan but decided against it when he thought about how his wife’s MS was progressing.

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Age at interview: 72

Sex: Male

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When I retired from the Royal Air Force I considered, I was 55, I considered getting another job. And I did various courses that they, they do and, and I applied for one or two jobs. I mean I had been, for example they asked, the, one of the companies working in Japan asked me if I would like to be considered for the job of the head of the, that particular organisation in Japan. Because I’d been dealing with the self-defence forces in Japan, so I had good relationships, I, we were there for four years, so I had good relationships, contacts and all that sort of thing, and they wanted to use my contacts and so forth. So I said after a time, “Let me consider this.” Initially I thought it would be a good idea and then after a while I realised it’s a progressive thing and I said, “No, I’m sorry, I can’t put my hat in the ring because, you know, it’s just not, just not possible.”

Louise decided to give up the stress of running her own business to work in a bigger organisation where she could get more support if she needed it.

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Age at interview: 49

Sex: Female

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When Chris was first diagnosed I had sort of run my own business, small business but that was quite stressful because it was just a small business. I was the one that had to be on hand, in charge, around all the time and I just decided, after a little while, obviously, had two young children and then he stopped work and was at home that I needed kind of to be back in a big company with all that support and so that’s what I chose to do.

So now I’m working locally so that I can come home quickly if I need to and there’s a good policy of, you know, I know there’s a good policy of if I need to take time off to look after somebody, if there was a crisis or whatever that that is definitely, it’s an it’s an organisation that is good about that. But I don’t have to worry so much about, you know, it’s a job that I’ve chosen to do, that a job that I can go, do it and not worry about it. Whereas my other job, when I was doing my own thing, I worried about it and I can’t worry about everything. So I can’t worry about family and Chris and work and, yeah, so that was and that was a good choice for me to do that. So although I like it, I mean sometimes we’re busy but there are times when I can just switch off when I come home and I don’t worry

Morris ‘could have moved and made something better of myself,’ but the need to care for his father has kept him in his home town.

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Age at interview: 35

Sex: Male

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For me personally it’s had a big effect on my life because I’ve had several opportunities to go to London and be involved in media and TV you know, I’ve had opportunities to go on reality TV shows to spend weeks on an island and stuff and I’ve had to turn them down just for the simple fact that I need to be here. I could have moved and made something better of myself because this areas, it’s quite a rundown area where I live it’s very deprived and there’s not much opportunity there for oneself if you wanted to do something or become something. And I always feel it’s best if you want to do something or you’re passionate about something, is to chase it, follow your dreams and go and get it, even if you have to go with what you’ve got, you know, and it’s not much.

I mean my dad came to England I think it was the early sixties and he had two pair of pants, a coat and £2, £2 English pounds when he came on the boat, it took him 21 days and, you know, and he came here to look for work for a better quality of life and years on that’s something that I would have done. I’m not saying that [place name] has a, a death rate or a life expectancy like Jamaica, I’m not saying it’s like that but if you want to become something better, opportunities in other places and unfortunate for me I’ve had to turn down every single one that could have bettered myself just to stay and care for my dad.

And, you know, it’s at times I’ll be at an event and I have to leave because he’s struggling to get on the toilet and to get off the toilet, you know, he might have had an accident in a way he hasn’t made it to toilet in time so I’m having to leave meetings and stuff and it’s not good for me, not good for work but it’s things that I have to do. I’m surprised I haven’t been fired to be quite fair because sometimes I was supposed to be somewhere and I can’t make it because my personally, my main priority is my dad at the moment and regardless of what it is I will drop anything to go and sort him out.

Last reviewed March 2020.
Last update July 2018.