I fear that weve reached the point of, you know, people aren’t supposed to live in this stage of the disease. I think hes only lived this long because hes a young, strong man. The doctors predicted his death five years ago, when he was given three days to live and that’s happened on a couple of occasions.

So hes not, strictly speaking, meant to be living in this phase of the disease, which is so bleak. So, yes, weve experienced so much, me and him, you know, like a little team but, you know, can’t believe were still battling it really. But I’ve kind of got to the point where, I’m kind of ready for it to end now, kind of, not quite because I can’t be confident that hes okay anymore and for as long as he was okay with the condition, however awful it seemed to the rest of us, I could, you know, support everything he wanted to do in that limited world that he was in.

But now I just don’t know, if he was in hell. I can’t get a consistent answer. I say to him, Are you finding life tolerable? Are you finding life intolerable? Are you coping? Are you not coping? I’ll, you know, phrase every question every which way I can think of to get a consistent blink but I’m not and I don’t know if that’s because he can’t do it or if that’s because hes saying, It’s complicated, sometimes I’m okay, sometimes I’m not okay.

You mentioned the palliative care team. What input do they have?

A couple of years ago they were quite involved. We saw a consultant from time to time and a couple of nurses would come round. Now, I’m not clear. His parents have a better idea. They don’t seem to be hugely involved because, although hes end stage, because hes been, because he keeps fighting back after all these various infections, I don’t think that hes in that kind of very critical end stage that they would kind of get kind of get involved in. We were offered a room at the palliative residential unit and said no to that. Were lucky that he can be at home. Much prefer him to be. I think if he went into a hospital or a residential care, I think he would die within weeks. I think he gains great comfort from being at home and if in his head hes much more well than he actually is, which I partly think that is going on a little bit, then of course hed be at home. It makes complete sense. So, you know, why wouldn’t he be?

So no, they have been involved to some degree. I thought there was a time when he was dying and I remember saying to the palliative nurse, Is this it. Because he had sort of, rattling, he was rattling. I was thinking, This is the moment and this is all, it’s all, this is the time when it’s all starting. And she said, No, no, no. Hes not there yet.

So, I’ve done a lot of reading about the signs to look out for and sometimes the doctors, the locum doctors in the middle of the night have said, This is it. Get his parents round. And at one o’clock in the morning, I’ve had to get his poor parents out to come and see him because they’ve said, Right, his organs have gone into failure now. And the rattle has started and you’re thinking, Oh my God. And then, you know, twelve hours later hes fine again. So people get, this is what I’ve learnt is, that medics get things wrong all the time in complex neuro-degenerative diseases where there isn’t necessarily a template and he isn’t necessarily your average patient. So yes, I hope the palliative team will get involved in the future.

Some years ago we got leaflets on Dignitas and we talked about going to Switzerland and he did go through a phase of wanting to commit suicide but it was very short lived. He read the leaflets and that was it. The leaflets were put away. But the trouble is, this whole other issue, also he lost the use of his hands very quickly after that. So it would have been impossible anyway, or very, very difficult and certainly implicate other people much more. But yeah, that’s a strange thing that you can be very, very clear in wanting to end your life and then two years later, being very content. So imagine if he had gone for it but, you know, it’s clearly something to think about very early on.

Yeah.

If you lose the use of your limbs.

But is that right off the agenda for you both now?

Oh, completely. This is what’s so awful. I think that weve kind of, hes lived almost too long. It’s like were into this stage now, which we didn’t kind of imagine would happen.

You’ve talked about various types and levels of support from health and social care services over the years. If you were kind of talking to the health and social services en masse with some kind of summary message about the services they provide, what might that be?

In a way, I’m less involved in that. That’s more his parents domain. They deal with social services much more than I do. I did it at the beginning but not so much now. On the whole, weve had a really good experience. His social worker at the start was very instrumental in helping him move away from a first floor flat with three flights of stairs. The Primary Care Trust has been very supportive. Weve had a few scary moments along the way with the thought that funding might be declined and, obviously, there have been lots of interviews and assessments and various, you know, points, measures of his condition along the way, you know. And we were worried that he might be put into a residential accommodation, which I just think he would have, he wouldn’t have survived that at all.

So no, I’m really not the best person to speak to about this because I’m not involved in the day to day side but GP wise, palliative care wise, social services wise, whatever it is, just weve had a lot of a lot of help because I think, you know, a young, as he was then, a young single man. Hes had, you know, I wonder what help he would have got as an elderly married man or something like that. I mean I think it’s just so dependent on your circumstances and because hes so dependent on oxygen and things like that, he does fulfil the kind of extremely kind of high needs criteria and with elderly parents and all the rest of it. No, my experience of it has been has been very, very positive.

Bearing in mind the uniqueness of your circumstances and your relationship, is there anything you think you could say to somebody who might be facing anything at all similar to your experience?

I’d say it’s just getting that fine balance between kind of not being scared by the future but living your life to the full. So, you know, with any diagnosis of MS you don’t quite know the course the disease is going to take and you don’t want to necessarily be living with a shadow of a shortened life expectancy or very profound disability. But, at the same time, you have got to be quite realistic that it might happen and to not put off things that you want to do, and that might be having children or thinking about you know, sperm samples and things like that for the future, with all sorts of things, kind of embrace the legal ramifications, the living wills, the power of attorney, the directives, have those difficult conversations very early on because you never know when, if you’ll be robbed of speech at any time.

And also, I think the one thing that I’ve learnt more anything is that you do adapt to the most difficult and challenging situations. I think I was a lot more frightened on the first diagnosis. I mean I was absolutely terrified and now life is kind of okay. It’s enormously difficult but it’s okay and we still continue to have fun. You find enjoyment and pleasure in the most extraordinary situations and there are ways of managing extremely kind of complex situations and you do find strength within yourself that you don’t think you will have. You know, as human beings we have this unbelievable ability to adapt and I think that he and maybe I’ve kind of surpassed ourselves in what we thought we were capable of coping with and that goes for I think everyone who’s living with a kind of partner with a terminal condition or a friend or a, I don’t know, or perhaps living with the condition themselves or someone who’s lost a family member, or whatever it is. People, you know, find a way usually to cope.

I think it took about a year and a half to get a diagnosis. It was a long time. Him being reassured, me being paranoid, me constantly pushing him and, eventually, the news came in. This had a huge impact on me, more so than him, definitely, at this time because I’d read everything about it, so I was so aware of the various problems of the disease that could happen, whereas hed been reassured by the consultant, You’ve got a mild form of MS. It won’t affect your life expectancy. You’re fine. Off you go. It says on his letter from the doctor. It says, He took the news extremely well. Whereas I did not, at all. So from that point on our perspectives of his illness were very, very different. Him being the coping, capable, positive, optimistic one and me being the bleak, pessimistic, all consumed one. So and then it stayed that way like for the whole number of years, ninety eight, so thirteen years.

So that’s a brief summary of since nineteen ninety eight to two thousand and eleven. It’s been pretty quick I suppose. So it’s primary progressive.

Yeah, it doesn’t sound to have been that mild form that was declared at the outset?

Yes.

Can you tell me more about that?

Well, I feel a bit cheated by that diagnosis but I could say it helped him because in his head, My life expectancy won’t be affected because a consultant told me so. So when I’m in hospital with pneumonia and everyone thinks I’m going to die, I don’t think I will because I trust what the doctors tell me.

So in some ways perhaps that early diagnosis of, It’s all going to be fine. You might have a bit of a tremor and maybe a walking stick. Maybe hes internalised that and thinks, Well, that’s how it’s going to be. I feel very angry. I feel totally cheated. I feel that we should have been told that things could get really, really nasty because, as I understand it, a huge percentage of people with relapsing-remitting, it becomes progressive over, okay, for some people it happens over decades. He has been extremely unlucky that it happened just like the life of the person I read about in the book all those years ago. It’s, the form is exactly identical.

With the primary progressive form?

Yeah. I mean the only, my only relief that I get is that in the instance I was reading about this woman was screaming and shouting swear words and that was the only thing she had left. He has just been content, dignified, as much as you can be. Yeah, just content. Until the last few months really, really content in a way that he wasn’t particularly as an able bodied man. He was a very kind of intense, quite depressive character. Actually, he seems, weirdly, excluding the last few months, happier in his little bubble of a world.

I’m just wondering how much you think of yourself as his carer?

I do very much. I say I have a day job and I have an evening job. I say, carer’ almost as a short hand because I think our relationship is quite complicated. Ex-partner, best friendIt is a short hand. I do, no, I do see myself as his carer. I think I’m very proud to be that more proud of that than my day job, to be honest. I think it defines more, it tells more about me than my paid work. I think his carers would probably have an issue with that because they’re paid carers and I think sometimes they resent me being there. I think there are lots of issues between me and them which are complicated, very complicated, but they are paid to be there and I’m not and that is the fundamental difference between us. I’m there because I want to be there. I’m there because, you know, I love him and I want him to be as happy as he possibly can be So I don’t use the carer word in front of him but to anyone else, that’s definitely how I would describe myself as a short hand but obviously, it goes a lot, it’s a lot more profound than that but yeah, I’m very proud.

Can you say a bit more about counsellors and what they’ve provided for you?

I’ve had a bit of short term counselling but only very sporadic and well, I’ve had to seek out everything definitely. I’ve had, you know, I’ve had a few bits of counselling here and there and it has been great. But most of the time, you really just need to look inside yourself and you really want to find the support inside yourself because at three in the morning, when you’re feeling utterly, you know, so bleak about everything or, no one can really understand it. It’s not the same as a parent dying. It’s not the same as a child with a terminal illness. It’s, and it’s not as if I can say hes my partner, hes my ex-partner, and nobody knows how to define him. Hes my best friend slash ex-partner. Theres no word for it.

And about two years ago, I said to him, We could have a marriage, a blessing or a party. And which one does he want. Or, nothing at all. I gave him four options. Which one does he want to do? And he blinked to a party and I did this question about seventeen times and he wanted a party. So I hired a hall, photographer, got loads of food, got drinks and our families came along. So it was like a living funeral I suppose, to use that horrible American expression, but my God, it’s one of the best things I’ve ever done. Honestly recommend to anyone whose, knows that they’re going to lose someone, this living funeral, a party. It was just the best and okay, he slept through most of it but he was there. Hes in all the photos. I got to say everything I wanted to say with him being there. There were flowers everywhere in his various favourite colour, everything that you’d want to do at a wake or something like that we, basically, did while he was there. And got beautiful photographs, drank champagne and ate chocolate and it was just it was just so brilliant and I think I got that idea from a website about terminal diseases and I’ve got this happy memory now. Weve all got this really happy memory. You know, and just him knowing that he wanted a party, he got a party and it was amazing and it was the strangest party [laughs] in the world but, you know, we made it into something fun and important and, you know, he could be involved with. So that was a lovely thing to do from something that I had read. So but, yeah, I don’t know. I’m kind of saving up the fact that I’ll probably need a bit more counselling later on. I’m trying to do everything I can to minimise the pain that I know is going to be horrendous. So, that was one technique that I thought would be useful and then I think, hopefully, for all of us, for his parents as well.

Very, very brilliant time. I think they thought I was mad when I came up with the idea [laughs] but I think it was very, very therapeutic.

For everybody.

For everybody.

But, no, I think I’m saving up my counselling hours. But, you know, I think I’ve coped with it reasonably well but that’s because hes been so brilliant and I don’t think that’s typical.

I wondered if you could talk a bit more about what it means to have power of attorney. How you activated that process and for you what that means and what it might mean?

Oh, it’s something I take incredibly seriously. I have shared power of attorney with his father, which is, you know, for his mum is a very generous thing to give me and that, it’s a huge honour and really, because I have no kind of legal, you know, were not married, we have no legal relationship. So that is for me an absolute, in the eyes of the law, I, you know, I am his ambassador and I take that very, very seriously Any decisions about going to the hospital, you know, with, could he be readmitted and things like that, any decisions about his care or withdrawing care or any anything like that we always have kind of grown up discussions with, you know, his parents and myself. I’m always involved with all those decisions. So in the medical capacity, if ever he has to go to A and E or whatever either his parents will be there or, you know, or I’ll be there if I’m not at work and as things progress, clearly, documentation will become even more significant. So yeah, it’s a great comfort to me to know that I have that. It’s a great comfort to him I think to know that it’s not just his parents looking out for his interests because, you know, you’ll always be your baby to your parents, you know, and a grown up adult to me and I kind of know, I probably know him better than anyone else

So I yeah, I want I want to do right by him and this is why this particular period is so hard because I’m not sure I am doing right by him. But yes, it went through, you know, when he did his will several years ago, maybe six years ago and the power of attorney when his speech was going and it was assumed that he couldn’t give informed consent to anything anymore. Which I negated, actually, because I thought that he, knowing him as I do, asking him consistent questions as I do, I felt that it, I felt they deemed he couldn’t give informed consent far too prematurely, far too prematurely. And even recently, I was, you know, taking his vote from blinking, if he answered the same question, same answer, several times in a row over the period of a week. So I know his voting preferences at a time when people just assumed that he couldn’t even think about anything or answer anything.

Really I try and not think about the future and not think about the past. It’s quite unusual for me to talk about the past because it’s really difficult and the future is really difficult. The present is kind of, kind of manage that, day to day, present tense, we can kind of do that, you know, get through the day, get through tomorrow, kind of manage that but I show him photos and reminisce a lot. I don’t know how much he likes that, to be honest. It’s very bitter sweet. So I don’t know if that’s such a good thing to do but I try and just tell him what a brilliant life hes had, what fun we still have, you know. Weve been on this amazing adventure together. Yes, it’s a pretty tragic one but theres always been an awful lot of fun and laughs along the way and trying to just, you know, remind him how extraordinary he is.

And we certainly don’t talk about, no ones ever said to him hes got a terminal disease ever, no doctors, no one and weve just kind of gone along with it.

But do the doctors talk to you as though hes got a terminal disease?

Yeah.

Yeah, yeah. [mm]

Yeah, we just don’t stand in the same room. So we always go out of the room to talk about that.

Yeah.

Theres just no point in, why would you tell someone whose life is so awful already.

Yeah, he can probably work some things out for himself can’t he?

Yeah, I think so but that’s always been one thing that hes never quite accepted.

Hes always been in a bit of denial about that.

So we don’t say that hes not. We don’t say that hes going to live but we don’t say that hes not going to. We just don’t talk about it. We talk about music and the radio and present tense stuff.

MS entered my life, strangely, professionally and personally at exactly the same time. I was actually working on a project about it. So I was reading lots of books on the subject and I noticed that my partner at the time seemed to have lots of the symptoms, which he denied, and I kept reading, referring back to these books thinking, This is too much of a coincidence. And urging him to go to the doctor, which he did. The results were invariably fine but this carried on for such a long time that he had to go back on several occasions and I think it took about a year and a half to get a diagnosis. It was a long time. Him being reassured, me being paranoid, me constantly pushing him and eventually, the news came in.

So yes, so that was 1998 and, you know, to begin with it was a very kind of gentle progression but within a few years he was, had two walking sticks, within a couple of years he was in a wheelchair and living in a flat with three flights of stairs, so he didn’t leave the flat for a year, apart from hospital visits or wed have to get people from the street to come and help carry him down. I had to go out and find people to carry him or, obviously, ambulance people. So the only time he would leave the house was to go to the hospital.

Luckily, the people who he rented his flat from were extremely compassionate and arranged for him to get ground floor accommodation in a different part of London. So, thankfully, although belatedly, he did manage to get accommodation, which suited his needs, which were ever increasing. He needed much more help to eat because his tremors were so bad that again, after a few years, his problems with swallowing were so difficult, he had, he was getting aspiration pneumonia so many times that he had a PEG tube fitted.

By this time he was in a wheelchair having what was, you know, 6-hour care, 12-hour care, now 24-hour care. So, for the last couple of years hes been completely immobile. He lost his speech approximately three years ago. So weve been communicating by him blinking for the last three years but the blinking has pretty much failed us in the last few months. So now hes totally locked in, totally locked in and hes forty eight. I mean hes a young man.

So he has his carers. He has kind of paid-for care by the Primary Care Trust and he has me and he has his parents and that’s his world. So he very much, he stays at home, in the bed, in the chair. He can’t, you know, raise his hands. He can’t walk. He can’t do anything, but the blinking was a fantastic communication tool because I knew that, Are you okay? Are you in pain? We would just do binary questions, billions of them until he got too tired and hed rate his mood out of ten. And even, say a year ago, until, you know, a year ago, he would always say eight out of ten, if he had pneumonia one out of ten, but invariably, eight out of ten. How fantastic is that? And everyone would say, Oh. It’s What do you call it when you have MS and you’re slightly…

Euphoria.

Euphoria and I would say, No, that’s not right. Because his reporting is consistent. So if he felt ill he would say he felt ill.

Yes.

Or and you know, I’ll be asking these questions every single day, so I would have, and I’d be asking the same questions every single day. So, his parents struggled to communicate with him. The doctors, obviously, are going in to check UTIs, lungs, all the rest of it and not spending 45 minutes trying to communicate. So I was comfortable in how I felt he was communicating. But yes, but in the last few months I can’t really get any response. He stopped smiling about a year ago, so now it’s, you know, hell open his eyes when I come into the room and there are tiny little blinks, which I think are him trying to say, you know, Yes, I agree with you. But hes not clearly responding to questions. So, I don’t know how he is and I fear that he is not coping now.

I do feel a bit, well, I do feel a bit angry. I try not to be angry about what’s happened to him so much. I think I feel anger on a very subconscious level, which comes out in other ways, but it’s very easy to feel angry and I try with all my heart just to focus on what weve learnt, how it’s united us, all the kind of positive things. How it’s how, hes found all this strength as a person that I don’t think he had when he was well. How it’s brought his family together. How hes perhaps lived a richer life, knowing that it’s a shorter life. Because the anger just eats you, it eats you up.

It’s really awkward. I try not to bond with the carers deliberately because they obviously change. I think they think I’m the boss. I don’t think they particularly like me or like that. They’re all very good at the practical nature of the job. There are some who are particularly good because I think they tend they realise hes a youngish man and they’ll put on, sometimes I’ll go in and hes watching, you know, rock music and rap music and I’m thinking, Yes, because that’s what he would have watched. That’s what he would have watched.

And I put up photos of him as an able bodied man around the room. Theres also loads of pictures of me around the room, which is weird [laughs]. So we do have an awkward relationship. I don’t try and get to know them as people, which I know I should, but I haven’t got the emotional energy to invest in them. I’m extremely grateful for what they do and most of the time they’re very good. Some of the time, I think they could do more but it’s a hard job and it can be a boring job and scary job and they’re presumably not paid very well to do it.

I think they obviously get very tired and they get, particularly the night carer I think he gets massively tired and he doesn’t see his family much. He does ridiculous shifts every day, and has done for years. I think they think I rock up, I, you know, I arrive, I talk to him, I laugh, I put music on, I’ll readjust his position, put the TV on, do all the nice stuff and go. And they think, Well, what was that about? What’s she done that’s been useful?

I don’t think they underst.., because they never knew us as a couple or as or ever heard him say anything about me, they just, I don’t think they get who we are. I think I’m a disruption. I think I am yeah, I get in the way of their day, whereas I hope that I’m the highlight of his day. I don’t know that but I don’t know how they interact with him when I’m not there. I hope they do. I think they’re very fond of him. Hes got a face that’s very lovable, thankfully, you know, wide-eyed, very sweet face and I think the carers do seem to be very fond of him, thankfully. In fact, two of the carers have had a baby together [laughs]. And I said to him, you know, because of him hes helped to create a life and hes very chuffed about that.

Having met having met each other through.

Yes.

Through their caring work there?

[laughs]

[laughs]

Better not ask too many questions.

[laughs]

But I’m, you know, I’m, if hes not in the right position or if he looks uncomfortable, I’m allowed to say something about that. And, hopefully, I do it in a diplomatic way because I know their job is incredibly difficult. God, I know that, of course of course I do but they can’t give him what I can and that’s, you know, we are a team but I can’t bond with them. I have to be, I have to have some distance from them because then I’ll get upset once they, you know, once they move on.

I think the one thing that I’ve learnt more anything is that you do adapt to the most difficult and challenging situations. I think I was a lot more frightened on the first diagnosis. I mean I was absolutely terrified and now life is kind of okay. It’s enormously difficult but it’s okay and we still continue to have fun. You find enjoyment and pleasure in the most extraordinary situations and there are ways of managing extremely kind of complex situations and you do find strength within yourself that you don’t think you will have. You know, as human beings we have this unbelievable ability to adapt and I think that he and maybe I’ve kind of surpassed ourselves in what we thought we were capable of coping with and that goes for I think everyone who’s living with a kind of partner with a terminal condition or a friend or a, I don’t know, or perhaps living with the condition themselves or someone who’s lost a family member, or whatever it is. People, you know, find a way usually to cope.

We had an amazing relationship but ultimately, I did leave him although I never left him as a best friend. You know, our relationship has been consistently amazing but I left him as a romantic partner, which obviously didn’t help on top of everything else.

So I think he, I think our talks really support him, which is why, that even though I split up with him 2000, we have spoken and seen each other almost every day since. So…

Can you say a bit more about that? This is sounding very unique in my experience and my reading of literature there is, I want to say obviously…

[mm]

…I don’t know why it should be obvious, but there is a reference to relationships dissolving through MS. Everybody I’ve interviewed so far, whether it’s relapsing-remitting over many years, secondary progressive, primary progressive, all those relationships remain intact as living arrangements and romantic attachments, not always easy but

[mm]

So would you mind just sort of talking a bit about that dissolution of the romantic partnership but the continuation of your friendship?

Yeah. We always had just the most beautiful friendship in our relationship anyway. When he was diagnosed I was twenty four or something and I was so young. He was twelve years older than me and he was seeing the relationship as being marriage and children. I was not there yet, regardless of the illness. I was not there yet, although looking back now, I think if I’d realised what, how special he is compared to the general populace, possibly might have changed my mind [laughs]. And I’ll come to that later because we talked about getting married some time ago when he was very ill.

Ah, it was so difficult. At that point, he was very unsteady so he was falling over a lot. He was asleep by nine o’clock most nights. I was, you know, in my twenties. I was wanting to kind of go out a lot. I was just starting my career. I was socialising quite a lot, so often I would stay out in the evening, kind of come back at say for nine o’clock, when hed be asleep. And I, it felt like I was going out with a pensioner. It felt like I was going out with a very old man. I felt like our relationship had fast forwarded a couple of decades and this is what my life is going to be like as a pensioner, in my head, but I was living it in my twenties and I was so conflicted by it. I absolutely wrestled with what to do and I remember he was talking about marriage and I was very reluctant to go ahead and, obviously, the more ill he got my role changed. Of course it does. You become much more of an administrator, of a practical person changing light bulbs, just doing, being a handyman, just doing things.

And then, eventually, I kind of met someone else and I was tortured about what to do. I loved him then and I love him now and my leaving, I think I was more devastated than he was because hed been my rock for seven years and my introduction to kind of adult life, post student life. I met him when I was a student.

You know, massive, massive pivotal changes in my life he kind of oversaw, I suppose, it’s like a kind of paternal role, which is interesting now I’ve become the kind of maternal role now. Our roles have just swapped entirely so, yes, that was a horrible conversation but, I mean he didn’t really speak to me for the next six months, but after that point we kind of knew that we just had this bond, regardless of the illness but the illness certainly brought us together. It was like the glue in keeping us united. I suppose that’s the one good thing from his side that you could say has come out of it that, even though he lost me as a partner, his illness and his general loveliness meant that he was never going to lose me because in a way he has kind of got me, not in the way that he wanted, but until the day he dies, I’m going to be with him forever, unconditionally, without discussion. I have power of attorney. He has me, you know.

You visit him every day?

I used to visit every day until I moved and now it’s probably every other day, sometimes two days in between and that’s more from practical circumstances.

You know, it’s strange how what is normal becomes very kind of skewed and that’s why I think it’s important to talk to other people in similar situations, which I don’t have, because your whole experience of the world does change. Your whole experience of normality changes. Your whole experience of illness changes. And you don’t worry about, you know, the bus being five minutes late.