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.

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.

You said your son is, is seemingly beginning to think rather as you did of your parents, that it’s his turn to do the looking after. Is, is he part of your support network as well?

Oh, yes, of course he is. You know, hes, both the sons are. The son in Australia, he comes back. Did I say I’ve got a son working for, I’ve got a son working for [company name] in Australia? Because of my wifes Australian citizenship, both of them have Australian citizenship. So they can go and work in Aus-, both of them have, I mean both of them have been over there and worked. The elder one is back here now and married. But the other one is now still working for [name] there. So he comes back once a year and we do the old Skype stuff, you know, and, and talking. So I’ve recently started a Skype group so we can all be on together, you see. So another little thing that helps with… And she comes in to the little office with me and sits in front of the computer and sees people.

I said earlier on that I’d been involved with the MS Society and I had been in [place name] where wed come, the area wed come back to when we first arrived home. I joined the committee there. And then I came back here and I joined the committee here. And after a time I became sec-, I was secretary, and I was secretary for nine years of the local branch of the MS Society.

But after I’d done it for nine years I was really badgered by my wife to say, you know, she didn’t want to be involved any more really. She had gone through the stage of the optimism after first diagnosis, then going through the period of hope, if you like, and then after a time realising that in her case, with the sort of di-, the sort of MS she was, she had, so to speak, there was going to be really not much that could be done for her. And she really didn’t want me to be involved too much in the society. I had been involved with the national society. The local area had been re-, reorganised and the headquarters asked me to get involved with setting up the, the particular region. We, it’s called the s-, I think it’s called the [name] region really now and it’s [name] and so forth. So I got involved with that and helped set that thing up. I contemplated going as a, a trustee but she wasn’t, she wasn’t, didn’t want me to do it. So, you know, theres no point, no point doing something if she doesn’t want me to be involved.

And so now we are still members of the local branch of the MS Society. We do the odd things. But shes not, she feels now the Society can’t do anything much more for her as a national organisation. I know that they’re putting money into research and so forth, but it’s, probably it won’t be any research results which go to help her. All we do now is to monitor and control her symptoms. And so the idea of a cure for her is sort of, shes accepted it. And so we live life accordingly. But as we all know, MS doesn’t kill you. It’s something else that’s going to probably kill you. And so the idea is just to keep, keep life just on an even keel.

I’m just a member of the carers’ organisations but I try not to let things stand still. Sometimes you win, sometimes you don’t. And when I was, I retired from the Royal Air Force at 55 and after a couple of years one of the Social Services people said to me, Do you get Carer’s Allowance? And I said, No, I don’t. I don’t think I qualify. And anyway this lady looked into the situation and said, I think you probably do.

So I applied to get Carer’s Allowance and, yes, indeed I did qualify. And indeed I actually got Carer’s Allowance. Which was not very much, as you know, but I did get it. I reached aged 65, which is of course when you get the state pension, and I started receiving the state pension. But the Carer’s Allowance, although I had an underlying entitlement, the Carer’s Allowance stopped. And I started quite a campaign with, through the MP and with m-, with a minister and the Civil Service about, Why was it that I get to 65, I’m a carer, I still have all the costs I had the day before I was 65, and yet you’ve stopped it.

And they said, Oh, well, then of course you get the state pension and that comes out of the same pot, so you don’t qualify. And I said, But you see, hang on a mo-, moment, a man in exactly my position who finished the Royal Air Force in exactly the same rank and all that sort of thing gets the same pension, state pension but he doesn’t have carer’s responsibilities. So I’m now lumped in with the same sort of person who doesn’t get, doesn’t have carer’s responsibilities, and I’ve lost the Carer’s Allowance. Why is that?

Of course I got nowhere and I’m not likely to get anywhere. But it did just annoy me. It still, still rankles that I pay £70 every Thurday. Clearly a cost that, and a chum of mine who’s exactly the same rank I play golf with doesn’t have, and it just rankles a little bit. Well, I suppose we have to put up with that. The argument they, I, they, I suppose they deploy is, But your wife gets Disability Living Allowance and shes supposed to sort of support you in that. Well, okay.

Well, my wife had been having some interesting manifestations when we were on a Royal Air Force tour when I was an attaché in Tokyo. And we didn’t know what the problem was. She went to a, an expatriate doctor out there, who obviously decided it could be MS. And she was sent along to a consultant, a Japanese consultant at a Japanese hospital. And she, I sent her with the driver, I didn’t go myself because we hadn’t realised that this is what they were looking for.

And she came back with an envelope with the pictures in it from the scanner, plus MS confirmed on the outside. Which came as a bit of a shock to both of us. Anyway I got in touch with the MS Society and I brought [name], my wife home for a follow-up consultation with an RAF consultant, and he confirmed it.

Having been diagnosed in Japan, there wasn’t any information out there. And so I got in touch by telephone with the MS Society from Japan and they immediately sent me out information and so forth. And then I had to start seeking out information myself, and coming back home and dealing, dealing with them that sort of way. So our case of diagnosis of course is different in that it was on a, an envelope read by my wife and by me, not understanding the circumstances at all. An appalling way to found, find out. But you have to understand we were over there and it, we weren’t treated in the same sort of way at all.

When we came back here and s-, sort of hooked into the [name] medical services, through [hospital] and so forth and the neurological organisation over there, it took us a time to get in but once we were in they held little sort of meetings, co-, information meetings. And I felt that they were pretty, pretty reasonable at, at helping us, helping us along.

Having been diagnosed in Japan, there wasn’t any information out there. And so I got in touch by telephone with the MS Society from Japan and they immediately sent me out information and so forth. And then I had to start seeking out information myself, and coming back home and dealing, dealing with them that sort of way. So our case of diagnosis of course is different in that it was on a, an envelope read by my wife and by me, not understanding the circumstances at all. An appalling way to found, find out. But you have to understand we were over there and it, we weren’t treated in the same sort of way at all.

When we came back here and s-, sort of hooked into the [name] medical services, through [hospital] and so forth and the neurological organisation over there, it took us a time to get in but once we were in they held little sort of meetings, co-, information meetings. And I felt that they were pretty, pretty reasonable at, at helping us, helping us along. And so with the Society, with the booklets and so forth and being able to ring them up and talk, and the social and the medical services, I felt we were fairly well looked after. It took us a time, as I said, to get into the system, but once we were in… But then I suppose that’s again the nature of me, of sort of making myself known and maybe making a bit of a nuisance of myself in a sense [laugh]. But once we were in, then, you know, I’ve always been well treated really.

I think also as, as a carer you have to build up a support group around you, because you can’t do everything on your own. You have to accept you can’t do everything on your own. And after a time the Social Services were brought in. That was an interesting state, because from the, the Royal Air Force, from the service coming into civilian life, it’s difficult to slot in to where you are. I mean it was, I had to go around this local area to find a doctor for example which had access at those day, in those days. So I was, I just went to the little chemist up the road and said, Tell me the doctors around here. And I went round to each of them. There was only one of those five doctors that had wheelchair access. So that was the one we went to. They’ve now moved to a large, much larger organisation which is, has good access. But it, that’s the sort of thing that you sort of come across as you, as you move along.

So this support group, I, first of all I had trouble getting to the NHS. Getting Social Services interested was also a bit of a problem. Because you come into the, into the area and you go to the end of the list. Because of course they have such a large list of people it takes a long time to get, work up, work up the list. Anyway eventually we did. And I was as-, [name]-, my wife was assessed and it was decided that she needed some sort of care.

And that’s developed now so that she has morning care to get her up and to get her dressed and washed and so forth and evening care to get her into bed and showered and so f-, and so on. Because of health and safety rules, I have to be around the whole time as well. Because when shes moved by a hoist, we have a hoist supplied, that’s good, the Social Services do provide a lot of equipment, but when shes moved by hoist I have to be there because the carer is not supposed to do it on her own. So that sort of is an effect on me as a carer. I have to be there.

I found that it was getting difficult to do things in the garden. I heard of a chap who was, had become redundant and was going to set up a little gardening thing, so I said, Come and do me an hour a week. And so he does. And he still comes and he just helps doing things around the garden, which is part of the support. I wanted to sort of have a fixed time I could go and do shopping for example. So I got in touch with Crossroads. A fine organisation, you’ve probably heard of them. And they again came to assess me. And they provided a, someone who, to come just to provide me with two hours or three hours one day per week so I could guarantee going to have some time to do shopping and any other, any other little things that need to be done.

Being aircrew, I had, I’d been a pilot, and when you reach retirement age there is a, I’d already joined actually, a thing called an Air Experience Flight. You’d have the old grey guys in those days who used to go and fly the little aeroplanes, Chipmunks, Bulldogs, that sort of thing, to fly ATC cadets, CCF cadets, to give them air experience, 20 minutes’ flight. And that was an opportunity I took up down at a place called Colerne in the early days before the early days of the diagnosis. In those days I could leave her and go and do the flying and then come back again. It came to the stage when I realised I couldn’t just, I couldn’t just leave her and go off. And that required a set period of about six or seven hours. And I again approached Crossroads and said, Look, do you think you could provide someone on a Sunday morning or a Saturday morning? so I could go and do this, this flying down at Colerne. And they hummed and haahed for a bit and then they came up with a lady, a wonderful lady who said, Yes she was able, as a Crossroads employee this is, to come on a Sunday morning. And so I used to leave about 8 o’clock, shed come in about 8 o’clock, I’d leave at 8 o’clock and be back by 2 o’clock. And she would come and sit with my wife and give her lunch and that sort of thing for that period. That gave me the opportunity of going and doing the morning wave of a flying sort of a session with these cadets.

That’s what I mean by setting up a support group. You have to actually work at it. It’s not easy, you have to actually work at it. So I now have this, I don’t do the flying anymore, so that’s gone, but, but that same lady still comes in on a Thurday at 9 o’clock and stays through to 3 o’clock. She doesn’t now work for Crossroads. Shes decided to go independent, so I employ her independently. So I have to employ her so that I can now go off [laugh] and play golf. So I fix myself a, again a period each week where I can now go off and play golf. That costs money. It costs about £70 every Thurday. It’s not cheap. But it’s what you have to do. You have to do these things to make your life… So I now have a routine during the week with a support group around me who will help my situation.

A while back you talked about direct payments.

Yes.

Could you talk in a bit more detail about what that is?

Yes, now that’s an interesting one as well. We were approached last, last year by one of the, the ladies from [county council], who are the, who, who, who support the, our arrangements. And they have a, had a target for, I think by March next year of 30 per cent of people being on direct payments. And they came to see me and they, there was a lot of influential talk and so forth. And I said I was not too sure about this and so forth. But eventually, I’d obviously been targeted, so, This ones a good, good one… So eventually I said, Okay, I’ll give it a go and see how it works.

And so we have a bag of money now, which is supplied every month, and we pay the expenses. At first I thought, This is daft. And indeed in a funny, in some ways it is daft. Because whereas before, the care, the agency put their invoice through to the county council and the county council then paid the invoice money to the, and I, all we did was receive the service, now of course what happens is the county council gives us money into a bank account, the agency supply an invoice to us and we then supply the money to them.

So it appears that we have, nobody has moved, done anything different in the county council, exactly the same person working there, exactly the same person working in the care agency. I’ve been introduced in the middle of it. I don’t get paid or anything like that. And they just started using me. Okay, so it is useful in that I can, if I decide to go on holiday in France I can actually get a proper invoice and, and pay the bill, so to speak, and I can get care over there. So it is helpful. Rather than going to the Social Services and saying, I’m going to France. Can I send you the bill? and that sort of stuff, I can deal with it directly.

But it is an interesting manifestation. Particularly since I know that when I go on these four weeks’ respite that I’ve told I, I go on, I have to pay a large proportion of that, you know, I have to pay. But they do pay something towards it, so it’s fair enough. But they, what they do is, they bring a care lady in, one of the carers we know about, to live in whilst I’m away. So I get someone coming in to live in. And they still have to, because of so-, health and safety they still have to provide the other lady daily as they normally would. So then the bill comes in, and I know how much I’m worth. I’m worth over £1000 a week because that’s what they pay for this person who comes in to live with me. So I know how much I’m worth. And if you work that out throughout the, that’s what a carer is worth. And I don’t get Carer’s Allowance [laugh]. Ooh, it rankles, it rankles!

Which isn’t much anyway.

That doesn’t matter. It’s the principle of the thing. It’s the, it’s just the acknowledgement that there is a, you know, there is work being done, if you like. So does that help you with the direct payments?

Yes. Is there, is there a fixed amount of money paid into that bank account which represents an equally fixed amount of outgoings?

Yes.

So theres no accounting to be done?

No, because the daily ca-, no, what I had to do, I had to set up a separate bank account. So we just use the one bank account for this partic-,

So it’s quite open and obvious. And then when I had the separate invoice from the French care agency, I just paid it. Obviously I did a, exchange into euros and so forth, but that is then accounted for as well. And there will be, in not very long, the first annual sort of cheque, so to speak. And I have the bills, I have the amount of money paying in, I have the invoices, and it’s just a reconciliation really. I mean it’s no problem to me, but I can see for other people it might be a little bit of a difficulty. But at the moment I’ve had, there was a little bit of a hiccup at the beginning, there was bound to be, which was resolved after a time, and no problem at all. But it’s just a simple transaction.

You said earlier on that in the early years there, following the diagnosis there wasn’t a big impact on your lives. But then you talked about a series of stages whereby you, things gradually change. Can you identify a point where, or a series of points where it moved from not having that much impact to something that was life changing?

The first I suppose stage was, 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 do 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 possible. And so I suppose that was one point. Another point was when we had been in London, near London, we came back here, we were able to go on holiday with my wife using a stick and being able to walk. And then I think the next point came when I realised that she was getting so, it was so much energy she was using, we had to really consider the wheelchair. So I had to sort of approach it in a sort of a reasonable sort of way and, using the argument that, You’re using so much energy. Why don’t you let the chair use the energy and you can move around a little bit more? And that was the next stage, the wheelchair. I think the stage after that was when I realised that, that I could no longer just look after her. I could no longer just do the bits and pieces that, helping her to get undressed, to get up and that sort of thing. I needed now to have care to do that sort of thing, to have that support to help out, if you like. So I think that was the next stage. I think the most recent stage is, if you like, is that, I told you about the travel we had done overseas because of her being born in Australia, I think the next little step we agreed was she can no longer go back there. So these are the sort of, I don’t know if they’re general steps, but they’re examples of decisions we took along the way that affected our lives. I mean the decision that I could no longer do a lot of the things I wanted to do was taken away a long time ago.

Could you talk a bit more about the symptom control you mentioned monitoring the

Yes. —

the symptoms and the medication that’s required for that? could you just talk through that a bit?

Well, I mean I’m, obviously I’m not a doctor. But we have regular visits. She has, because she has an arm which is, tends to get sort of, you know, the, the problem of a, I don’t know what the, the medical expression is, but it can be clamped up against her body. And so she has Botox every eight or ten weeks for that. I keep an eye on that. And in order to keep her moving we have a, a young man who comes in every Wedneday and gives her some massage to keep her movements going. You’ll know that the National Health Service doesn’t provide the sort of physiotherapy which is continuing. They provide physiotherapy for, for getting over problems, but then leave you on your own. Well, I, she can’t do things on her own, so we get s-, a young lad to come in and she, he comes every Wedneday morning. So that’s one way of looking after that and keeping an eye on it and keeping the thing going, making sure that the Botox is, it’s worth it. In other words it’s, you have to actually work at it once it’s been injected. You can’t just leave it. You have to work at it. So that’s one way of dealing with it. With her catheter, we have to keep an eye on obviously how much is going through, the nature of it and all that sort of stuff. And so that’s a daily chore. Shes going through a little bit of a stage at the moment unfortunately, shes lost an awful lot of weight in the last six months and weve been going through the process of finding out why this is. It’s taking time. We have a, an appointment again tomorrow afternoon. M-, I think were getting to the stage now where it may be that they’ve decided she now has got coeliac disease, which is gluten intolerance. And that could well be the answer. Which could be another way of, another change weve got to work on. But trying to keep control of, she had an endoscopy which failed because she couldn’t swallow, I mean she has swallowing problems, couldn’t swallow the probe. So we, now weve been going through the ear, nose and throat stuff to see why that should be. Theres no blockage. So are we going to have another one? I don’t know. Well see. Her pills, I, she was on a particular pill for tremor and I didn’t think it was, she didn’t seem to have the tremor, much tremor. And so with the consultant’s agreement I gradually reduced the dose. And so she never had, she doesn’t take it anymore. And the consultant’s quite happy with that, and so that’s reduced a pill. There was another pill, I forget what it was, but I thought maybe it wasn’t actually doing what it was supposed to. In other words what I’m trying to do is not second-guess what the consultant, but look at the day-to-day effect of these things and see if we can improve things by changing. Is that the sort of thing you had in mind? So the symptom control, we know what her symptoms are, we just sort of keep an eye on it as we go along. Don’t just stay, you know, as it is, as it’s been diagnosed until the next time you see someone. Work on it as, as you go along. It’s quite true that they talk about the expert patient. Well, theres also an expert carer. And that’s the way I deal with it anyway.

So that’s another area that you know, you have to work out, so to speak. So I think caring over the, a longer period is a matter of working things out, thinking about it. Not just sort of letting somebody else think about these things for you, but for developing them yourself. We have a disabled adapted vehicle. We had one which I got second hand. It was called a Kangoo. They’re good for a lot of people. It was no good for us, because with my wife in the chair in the back the window was just too low and she was just looking out to whizzing road. So that’s another little thing I picked up. So we got rid of that and we, but we tried other cars before we bought one. And, so it was important that she was able to see out the side. Little details but, my goodness, they do make a difference.

Carers get depressed as well sometimes.

Yes.

How does, how does that affect you?

I did, I used to get very, very depressed. And, you know, you think about when you’re 55 or 65, you think, Can I do this after I’m 65? What am I going to do? What am I going to do when the life insurance matures? Am I going to do something silly? or something like that. And I think these ideas go through your mind.

But for me, after a time, having got the routine sorted out and so forth and, you know, I’ve got past that stage and it’s routine now. And I don’t get worried at all. I don’t get depressed. I’m very lucky. I do, I play golf, I told you, on a Thurday and I’ve got two very good mates who are prepared to adjust their times for example so that I can go and play with them. And they’re part of my support network, if you like, you know. So it’s doing something about it. It’s thinking about it. It’s not just sitting back and just bemoaning your fate, I think. It might sound, I don’t know, probably, it’s not meant to sound self righteous. It’s meant to sound that, This is in my interests to do this. This is for me. It isn’t for anybody else. This is good for me. That’s the way I see it.

Well, I, my approach to caring is now, after many years, it’s a job. It a job which has to be done. We know it’s a job that has to be done, because I write to Social Services each year and I say, I want four weeks’ respite each year. These are the dates I’m going to take. I don’t ask them, I tell them that this is what I’m going to do. And they have never yet come back and said, No, that’s not a good idea. They accept, because of course now in these days I have also had a carer’s assessment. So I think you have to take control of these things and tell them what you need. And so there is always something perhaps that needs to be considered, to be worked on, to work… I mean just recently I know now that when we go away on a holiday I’ve got a, because we have a, nursing beds here, when we go on holiday we need some means of lifting her in bed. So I’ve got a pillow lifter, a bed lifter sort of thing, which is very good. Now I’m contemplating that she may want to go to bed earlier than normal. But then she likes watching television, so I need to get a sort of some means of getting her the television which she can watch when were on holiday. These are recent things that I’ve been working on. So it’s not something which you just have to let other people give you a sort of an idea. You actually have to deal with it, think about it as a job. And if you were in a job you would, you would be assessing things that go along, changes, improvements and that sort of thing as you go along. And if you take this approach, if you like, to caring, as a job, then it becomes much easier. And when things happen that she coughs her food all over the floor, she has an accident in bed, it becomes routine. You’re, you’re, you, you’ve done it before, you know what’s going to happen, you have a routine to deal with it. And you don’t get annoyed, and so she doesn’t get embarrassed, so to speak. Do you, do you understand what I’m getting at? And it’s very important I think to make sure that she doesn’t feel that she is giving more trouble, more work than shes doing anyway, you know. That’s what I mean by it being a job. Now I know I can’t go out in the evening, so I do other things, you know.