I think I ought to say that I appreciate that I’m fortunate in the sort of job I did gave me a pension and an ability to do things that I want to do to support my wife. I appreciate I’m fortunate. And I made the issue about Carer’s Allowance, but I appreciate that that’s not really an issue. And we can do within our limitations roughly what we want to. And if I need to get something, something material in support then I can do that. I appreciate I’m very, I’m lucky and that there are a lot of carers who are not in my position. And for them I’m, you know, I acknowledge that it’s difficult for them. So I do appreciate I’m lucky. Nonetheless I’d much prefer it if we didn’t have this burden around our neck because we could do a lot of other things that we would have liked to have done. That said, we, I think were getting on fairly well within our limitations.

I think my main concern I suppose is what would happen if something happened to me. So I haven’t mentioned this in fact, but because this had happened quite early in our lives and having done research on MS and you read the worst things it can do, and you have to think, Well, what would happen if something happened to me? So I made sure I took out life insurance first, made sure we did a will. And I mean I made myself become something of a financial expert. I swotted up initially through a relative of mine who knew a lot and gave me a lot of good tips actually. But I made some long-term investments, which have recently come to fruition. So financially I’m very fortunate in that respect. But I don’t really have that problem.

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, weve 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.

Were 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 weve 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 wifes 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.

Looking back, we should have applied for it before we did. I don’t think there was such a stigma about applying for it as there was for starting to use a walking stick, for example, because it is practically so useful but we held off, for some reason. I’m not sure why and we psyched ourselves up to ask our doctor about it and we had nothing to fear. I don’t know why we built it up to be such a thing. Maybe because we had heard stories that people had had to jump through hoops to get them and our doctor’s reaction was, Of course. I have people walking through that door asking me for a blue badge when they’re perfectly fit and able. Of course you can have one. So for us, it was it was straightforward.

And once shed got one, it did help. Work have been very good in that they’ve allowed her to park in a disabled space for quite some time before shed actually got a blue badge and then they tightened up the parking and she was told she could no longer use the disabled spaces and it was that that really, I think, told us that we really ought to apply for a blue badge. You know, theres no reason why she shouldn’t have one. So, but when it actually came to ask for one, the doctor was absolutely fine and he said, Yes, I’ll sign it off. No problem at all. And it’s been such a help. It really is. And also, the fact that the spaces are wider in that we have room to open the car doors fully because some car parks are terrible and the chances of my wife being able to extract herself and twist herself round to get out in a tight car parking space, sometimes it’s just not possible. So the fact that you can open the doors wider and have a good chance of getting in and out unrestricted, that helps an awful lot as well.

So, was the application process itself simple? Because I’ve heard people talk about having to do the whole DLA application to get a blue badge.

Right.

Did you have to do that or?

No.

Did you just apply separately?

We applied.

For the blue badge?

To the doctor for a blue badge and he granted it. That was that. There was a little form to fill in, not an awful lot. But no, it was absolutely fine. Like I say, we should have done it a lot earlier than we did but, you know, the doctor is very familiar with her case and said, Sure. No problem.

In the end it was becoming so difficult to move her around the house especially the toilet, you have to lift her off the chair, when she was downstairs, put her on the toilet downstairs there was a tiny toilet. I had to take time, I couldn’t just do it straight away she has to be relaxed certain things like that and then help her off the toilet, clean her, pull her pants up, wash her sometimes. During that time about six or seven years ago I adapted the bathroom upstairs so she can climb or come near the shower, got rid of the bath and put a shower tray, a low shower tray so she can step over it. It became a little bit easier just for a short while, afterwards it was becoming very difficult to lift her from the wheelchair into the shower cubicle so we decided to extend the house downstairs to have her own bedroom and her own walk in shower and I didn’t get any help from the government or the local council because I was earning, I was working I was earning more than £17,000 a year and that doesn’t entitle my wife. And I resented that because I said why do I have to pay for it, I’m not asking for the help my wife is asking for help, we worked all our lives weve never been out of work, we pay our taxes and things like that so I resented having to pay but I had to do it in the end, I had to do it. So with the few savings I had I decided to start building the extension because I’m a builder myself. It took me about three years to finish, not even completely finish because I haven’t got a floor yet.

I think having talked about money a bit I’d better say that one thing you’ve got to be prepared for if you’re a carer for someone with MS is your income going down quite substantially. I mean first of all you probably won’t be able to hold down your job if you’re a full time carer I had to give up my job it was only a part time job because I couldn’t manage but that was £10,000 a year income off xxxx. There are things like the converted vehicle which cost about £4,000 more than a normal vehicle and all sorts of gizmos. Theres a thing called Lifeline which consists of a lanyard you hang round your neck and you have a connection to a distant call station where if you have a fall you just push the button on your lanyard and they come on the line and say ‘Are you alright?’ and if you say No I’m not, send paramedics round,’ they send the paramedics round. So what you do then is you install what you call a wall safe outside the front door and you put your key in it and you tell the Lifeline people what the code is so that the paramedics can let themselves in even if you’ve collapsed somewhere in the house and can’t get to the front door to let them in. It’s a wonderful thing for the carer because it means you can go out for half an hour without driving yourself potty wondering what’s happening to the person you’re looking after.

And other expenses are for instance that if the disease gets very bad you’re probably going to have to bring whoever it is downstairs because they can’t get up and down the stairs anymore, that’s another expense by the way, stair lifts. they can’t get up and down the stairs anymore even on the stair lift so were in the process of having the two downstairs rooms, two of our downstairs rooms converted into a bedroom and a wet room for my wife. It’s going to cost me about £25,000 and there is no grant available for this because I own my house and therefore I’m a rich man aren’t I?

Shall I talk about care and funding?

I mean this is still going on. But after, well, just bef-, when my father got quite sick I’d never really looked at sort of the legal situation and if someone needs to go in a care home how that’s paid for. My parents made their will in the 90s when both my brother and I were both healthy and well, showed us the will, s-, Left to both of you. You know, if you’re not around, your cousins, and so on. Basic, standard will. Well, I think it was probably left to each other, and then us. When my dad was getting sick we had a conversation about if [name] had to go into a care home and worrying about my parents’ house and whether that would have to be sold to pay for [name] care. My dad immediately said, Call the solicitors. I’ll change the will. I’ll sign everything over to you.

So I phoned the solicitors, who said, No, we can’t, we can’t really do, we can’t really do that. But what we can do is set up a disabled person’s trust. So your brother’s part gets left in a disabled person’s trust. And that will protect that, any equity or money from being paid for, to be used to pay for his care. And this money would then be for anything he needs other than that. And I thought, Well, that sounds great. So we made an appointment. Unfortunately my father passed away two days before the appointment was supposed to happen.

So we went into the situation with the will as is, being left to us in equal shares. My brother’s social worker immediately after we discussed the whole [name] going into a care home situation was like, Well, you’ve, you know, the house will, you know, have to be sold. I was quite upset about this. I was like, It’s half my house too. And I’d started to do a little bit of research about this and said, you know, I don’t think you can force me to sell my parents’ house if I don’t want to.

Not a lot more was said for a little while, because I think there was a feeling then, once it became apparent about moving to London, that if it was [name]’s choice to move to London and those were the words, that the council that he was under would not be responsible for his care anymore. So, you know, You’d have to go off and do your own thing and it’s nothing to do with us anymore. The home that my brother was in as a temporary respite, there was a key worker there who had another client who had moved, not as far away, but to another borough and found that, No, actually that’s not true. And you would be responsible still as the home council, even if you choose to live in another council.

I wish that I’d taken legal advice, you know, before that point. Because I’ve had to stumble my way through for quite a lot, quite a lot of the first year I stumbled my way through trying to understand the care system, trying to understand the rules, trying to understand, you know, what were responsible for, what were not responsible for.