I’m quite lucky, working in the Civil Service, because they’re quite understanding to carers’ needs and theres 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, theres 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.

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.

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 hes 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.

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.

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 theres a good policy of, you know, I know theres 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 were busy but there are times when I can just switch off when I come home and I don’t worry

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 theres 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 hes 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.