I said to the home where my brother is quite recent, like at the beginning of the year that, you know, I want to go to any regular appointments that he has. And then he had an appointment with the neurologist, so they told me when the appointment was and it was at 2 o’clock on a particular day. So I’d arranged with work that I’d go straight from, I’d go straight from work and I’d meet my brother at the hospital. I got into the room where the waiting room just on 2, to be told that hed been and gone from the appointment.

Because, because he came in on a stretcher, they saw him as a priority at half past 1. And I was devastated because I wanted to speak to the neurologist because I wanted to find out like what the situation was and how hed deteriorated. So I asked if I could speak to the neurologist and immediately I got, Data protection, you know. Can’t speak when the patient’s not there, and all that kind of thing.

I mean I happened to have, and I said I’d go and get it if they really wanted it, a copy of power of attorney in the back of my car. Eventually she told me to wait, the nurse, and that shed speak to the neurologist when he came out of his next appointment. Fortunately, the neurologist was quite happy to speak to me and that’s when I went in and was told that, you know, his condition had got a lot worse and that hed given him some Botox. And, and then he said the words, I’ve made an appointment to see him in twelve months’ time. If I see him in a year, great. So I was basically thinking, So you’re basically saying to me that my brother has about a year to live.

I don’t know which way you can deliver news like that that makes it any, any easier. But he did offer to, if there were situations where [name] was in hospital in the future, you know, I could contact him and get him to, you know, go and have a look at him. He also talked to me about if theres a situation in the future where [name] might have to have, oh, what’s the word for the machines? The neurologist also talked to me about if [name] had, would have to go, if he had to go on a ventilator in the future and, and what his views were about whether or not that would be useful to [name]’s health. It was quite useful to have that conversation although it was quite upsetting, sort of understand the practicalities. Got a bit of time to prepare for it then. And even though, you know, it may be less than what, the time hes given, or more, it makes you, I guess, be able to take stock of, of the situation and, and try and prepare yourself a bit more. So, so, yes, I found the neurologist that weve seen quite useful.

His GP, as well, is quite nice. We had an end of life care conversation as well this year. Theres been a lot of these sad conversations going on and I’m sure they hate it just as much as the relatives. So it’s quite, it’s horrible, but I think sometimes you need people to be honest with you as well. My mum was quite private about her illness and didn’t really let us know how bad it was. It’s a different situation with my brother because obviously you can see it more obviously what’s wrong with him. I think it helps to be a little prepared. I don’t think you’re ever prepared for losing somebody you love, but I think it helps to sort of know, and also feel that you’re making the right decisions.

But I mean sometimes I think about funerals and things because, because we live away from where we are and I think about the practicalities and, you know, Would we have a funeral in London? Would we have a funeral in the Midlands? And, and then I feel quite macabre thinking about funerals. But, you know, I had to plan my father’s funeral. I kind of helped with my mother’s, though my father was trying to do it all by himself. I’m quite glad he let me in a little bit so I knew what to do a bit when he died. So, I suppose I have an understanding of things that have to happen.

But then I found out the other day at a home meeting at my brother’s that if you’re moving someone out of a borough, then theres different procedures that have to happen if you’re moving a body out of a borough and different things that have to happen, and if you are having a burial or a cremation like about the number of doctors that have to sign off the death certificate. Then obviously my brother has a relationship with some of the carers at the home and then I think about, you know, If they wanted to pay their respects to him, how would I do that? And thinking, start thinking about me bussing them all up to the Midlands or doing something down here and, I don’t know, my mind wonders sometimes.

And it has, I’ve had to think about it as well recently because the home that my brother lives in has changed management and they’ve brought a waft of forms that, that need filling in, and obviously I’ve had to fill in most of them because my brother can’t. And some of them were about end of life care, some were about what kind of funeral you’d like, things that, you know, most people don’t talk about to anybody. So having to kind of try and engage him about thinking about it but without trying to depress him, I suppose, is quite a hard thing.

Because like, you know, when people, you know, some people will make off the cuff remarks to you about, you know, When I go I’d like this song playing. My mum did that. My, my dad said to me years ago about having a, a jazz band at his funeral and I arranged for that to happen. But I don’t really have any clue about my brother and what his wishes are, and he doesn’t really want to talk about it. And then you worry that you might not do the right thing. So I do, I think about, I suppose, that side.

Weve actually said that if, I mean this was way before any of this came on board, that if either of us were in the situation where basically we needed, we needed care all the time, then we would consider this place in Switzerland and we should do that for each other. But of course you never think that this kind of thing is going to come on board.

That’s right. And you do have to activate that in some way.

Yes, absolutely, absolutely. But therell be a point that she reaches that shes going to say, I’m not doing this anymore. Because shes, shes quite a, a strong-willed person. And she will, if she gets to the particular point where she said, I’m not doing this anymore, then we will do that, most definitely. Who knows? It’s a consideration. I know we say, we, do say it in a flippant manner, but there is an underlying theme there that should that particular position arise then it will have to be given serious consideration.

In terms of advance directives or..?

Well, put it this way, we haven’t even looked into that particular aspect yet. I mean there may well be, there, there, will be a point in the future. And certainly we don’t want to consider it at this particular stage. May-, maybe were just putting that to the, on the back burner. We want to try and get her mobility back to some sort of ordinary state. And if the, the operation that, that shes had, you know, last year, not, not last year, this year is going to work, we don’t know if it’s going to. I don’t know what our expectations were of that, maybe that shed miraculously get up and walk, you know, two days after the operation, but clearly it doesn’t work in that particular format. But well see.

We sat and watched a television programme the other night with Terry Pratchett and where one of the people he was talking, interviewing went over to Switzerland to Dignitas, a 42 year old suffering from MS. And my wifes attitude was, far too young. I don’t, well I certainly aren’t in a position where that would be a possibility because theres nothing that much wrong with me that can’t be controlled with tablets. If my wifes situation gets worse and worse I would be very surprised indeed if she went down that line. She would be more likely to go into a local hospice for, if it was because of the pain or whatever and you know, that route.

I think, were both baptised Catholics. Obviously this is a dreadful sin is to take your own life. Now I don’t think we think along those lines particularly. I think in terms of when is it right to do this? And it may be right it may stop the particular person feeling pain at that moment. My wife has said the same, she said, When, if you do that with the aid of Dignitas and you suddenly find yourself outside the Pearly Gates and St Peter’s standing there, and he says, Oh, you’ve had that mate, you’ll have to go back down and do it all again. Only worse this time. If you do sort of think theres an afterlife, perhaps it isn’t really the right thing to do. There are better ways of dealing with it.

Obviously I’d miss my brother terribly. But at the same time I’d probably th-, I know what I’m going to hear a lot of already, I know a lot of people are going to say, you know, Hes at peace now. Hes resting. Hes not in pain anymore and, you know, hes, he… almost like hes better off dead.

And maybe part of me would agree because I don’t, as I said, I wouldn’t want to be bedbound in bed with the way he is. I just wouldn’t want that. I watched a programme a little while ago, Terry Pratchett, where he was looking at Dignitas and the clinics. And there was a young man who wasn’t as disabled as my brother who had MS who, who went there and decided to, to end his life there. And part of me was like, Well, you’re not, you’re not as bad as my brother. Why are you going yet? Why are you going now? But if he got to the point where he was like my brother and then couldn’t make that decision, and so obviously he was trying to, you know, nip it in the bud. But whether he went too soon, I guess no one will ever know.

Is there anything else that you think health and social care workers could supply by way of a service to you that they don’t?

Oh, how do you know you want something? They ought to stop saying we are going to help you and what they do is hand out leaflets or brochures and you have to get on with it yourself, that’s it. Maybe it’s good to do it but sometimes you don’t have time to do it, maybe they could assist you with doing some of these things, put themselves in. If one was an unmarried mother, even better an unmarried lesbian mother, maybe I’d get more help, but I’m not and therefore I’m seen, get on with it, hes coping and that’s it, you know. And they ask you a question, one of the questions on the carer’s assessment, Do you ever feel suicidal?’ You say, Yes. Oh, dear. That’s the end of it, Oh, dear. On one occasion we were on a cruise and I thought, Shall I jump overboard?’ And I thought, No, no, no, no it’s cold. [laughter] I’m a coward! You don’t want to because you’ve got somebody depending on you and they depend on that, that you won’t harm yourself because you’re caring for somebody. So, they get away with it.

Again, if this isn’t too painful, weve had a conversation together off camera about people choosing to end their lives because their experience of living with MS is more than they can bear. When you think about that, how does that have an impact on you?

It’s quite frightening. Yes, Jenny has had moments recently where shes been up and down like a yo-yo. She has had moments, weve actually got to the stage now where most of Jennifer’s medication is not in the house. It’s up at my mother’s house and I tend to, I go up there once a week and make up her medication for all the week and basically I’m administering Jenny’s medication for her. I make it all up and I administer it on a daily, on a daily basis because you know knowing the way that Jenny has been feeling just, just recently it’s quite frightening. And, you know, I can’t fully understand it but I can understand where shes coming from, you know, what shes actually been through especially more recently you know with one relapse after another after another it, you know, I can understand that, you know, obviously shes had some very, very down moments when shes thought you know, I don’t want this anymore. It’s quite frightening.

And when I’ve been with him, when weve actually been listening to music, the music has been on the morbid side, I would say, and I have asked him, when he was at his lowest moments whether he whether he would actually consider suicide and he said, No, I don’t think I’d, you know, want to do that. But there are times when I sort of seriously wonder because hes, hes sort of always sort of been on the depressive side anyway really. And I do understand about that myself because I used to be on the depressive side myself. I mean I have had, not exactly clinical depression, but I have had I’ve had one breakdown myself. It was ten years ago but I’ve had one.