You said that you realised you had a lot of friends. You were telling me that off tape before. How have different people reacted to you? How have these friendships changed or not?

Most are shattered and frightened. But most of them have learnt to accept it for me. And when they come they ask, and if they can’t see they ask for the changes, and I tell them. And then I say, ‘Turn the page. That’s my expression for no more. They all know I’m dying and it won’t be long. So I say, ‘Right, turn the page. And what have you been up to?’ and so on, and we don’t mention it again. But they are very attentive to my needs, switching the TV on and so on. People are lovely really. But it is frightening, isn’t it? So there we are. My philosophy is that a lot of people are going to die in the next week and they don’t know it. And similarly a lot of people suffer pain. I’m very lucky, I don’t. I’ve no pain which requires analgesic.

Is religion important to you?

No, not important. What is important is [cough] what I said – I’m a scientist. I’ve put the questions along, very much, and I reach a point where there are things that I cannot explain. So in my viewpoint, religions are just interpretations. So I’m very free about that. People can interpret the way they want. I’m tolerant to every interpretation. But I don’t need religion. But I reach a point where I committed. For me I’m committed to believe there’s an entity. So I don’t call it God, because people can call it God – so there are not – a lot of people are Christian, believe in what they call God. They idolise their way. No problem. What I call an entity is more complicated than that. It’s things which are both spiritual and physical etc. It’s just the fact that I am committed to believe that there is one, because I cannot explain things like energy, and plus and minus, content and not content etc. So this helps me to have a very strong spiritual position, by the fact that I’m not afraid of death. I have, I’m not at all polluted by things like heaven or hell, all these kind of things. So I just believe that there is a wonderful world, and a wonderful machine that we are, and all the wonderful machines of our loving life, whether they’re animals or, or humans or plants. And this is the sign that – for me anyway – diseases are part of, of, of nature. So in fact I came to this perspective very slowly by thinking that there is a need for having diseases, because that’s the way nature regulates the, the species and regulates everything. And nature, for me, in my conception, is the armed arm of the entity. So if there’s an entity somewhere, it’s using nature to regulate this thing. And from that point on I’m fine. But still it doesn’t mean that you are, or you cannot fight or you cannot hit back. It’s nature given to you as well.

I think I’m very lucky, in that I don’t dwell on it [tearful]. But it does occur to me, and it does scare me. And I think, you know, sometimes when you, you see – certainly meeting doctors for the first time and explaining my history and telling them that I’ve had it for three years, and their response is, ‘Well, well, that’s good, isn’t it?’ And I kind of think, ‘Well, it was for the first two, and now it’s getting harder,’ [tearful]. I still, I still have a good quality of life – very good. But I do worry that as that diminishes the progression will still be slow. And that worries me.

Have you actually put anything in writing about your wishes, or [shakes head] – no?

No. I think I’ve – it’s only really started to occur to me just really in the last three or four months – and not in an overwhelming way, you know, just every now and again, and it won’t upset me. Every now and again I just sort of think, ‘Hmm. Or, you know, little things like, ‘Ah, so I am going to have to think about winter. Hmm. I was only banking on having a summer to summer, and you know, hmm, winter’s going to be hard. Hmm. I would rather really opt out of that. So not all of it is heavy thoughts, but it is starting to occur to me more, and it’s something that I’m going to have to face. And I think it’s just something that I’ve been working through, as I’ve been thinking about, ‘Oh, right, Rilutek. Right, will I start taking that? And actually, hmm, no. Why, you know, why, why would I, maybe?’ And it’s not that I’m, I’m suicidal or wishing my life will end, because every day generally I have a lovely time. And, and I think, ‘Phew, I wouldn’t have wanted to miss that. But it’s worry for the future. I think if I really push myself on it, yes, I am, and worried for what my husband’s going to go through as well [tearful].

I, do you have views about what you’d want to do?

No, that’s too far away, far too deep. No, I haven’t really got that far at all. I haven’t looked at what my options might be. I’m quite a shallow person, so I’m quite able to keep myself in the moment, [laughs] and as long as it’s sunny I’m happy. So, yeah, I think about the nice treat that I’ve got next round the corner, yeah.

Yeah, I’m, I was brought up Church of England and, and was in the church choir. And that was a very strong – my parents have both got very strong faiths. But I don’t, that doesn’t really do it for me. It’s really more a, yeah, I’m much more neutral, I think. But I, I do think that it, it sort of, having the illness and doing the course [a ‘mind-body- spirit’ training course] has made me think about life and what life means. And what, I kind of get things in perspective and that, although I’ve got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it’s emotionally and something, or something that doesn’t have a label on it, or whether people are, you know, do have an illness. You know, everybody’s got something. And, and that in turn allows you to see what is rich about life. So if, if you didn’t have death, you didn’t have disease, then you wouldn’t quite see the richness of life either. And that helps me, yeah.

As a bigger picture, that helps me. And the smaller things, when I can’t reach things or I just can’t do things, that doesn’t really help me [laughs]. That’s just bloody frustrating. But there’s a bigger picture, yeah, and that gives me calm.

I did, I have arranged my own funeral. But I mean, I did get a shock because I thought it was a case of, ‘Well, I’ll write down what I want and I’ll just leave it for somebody. So I rang a funeral director up, who I knew, knew had done, done a funeral for a friend of mine, and kind of said, ‘I want to arrange my own funeral. Can I just leave it?’ And he said, ‘Well, you can, but I would rather come out and see you. So he came out, and I was actually gob smacked at how much information he actually – the time of the funeral, did I want flowers? Did I want a church? What sort of service did I want? I picked the music, and I picked the service. What to wear? Which was quite humorous, working out what I’m going to wear in the coffin. Hopefully I’ll look good [laughs]. But also it takes the pressure off my immediate family. And because, because of the music I’ve picked, nobody else would have picked. Everybody that I’ve spoken to have said, ‘Well, thank God you’re arranging it, because I would have picked Cliff [Richard]. And I’m not having Cliff [laughs].

Why? [laughs]

Because there are two more songs are more important to, and I couldn’t pick any one Cliff song but, and it would probably be ‘Miss You Nights’ for the sake of it, and that’s not really what I want. So, well, I did want, for a laugh, ‘The Wicked Witch is Dead’ from ‘The Wizard of Oz [laughs], and then the tape would stop and somebody would say, ‘Ooh sorry – wrong tape. But I don’t think that would go down very well [laughs].

[laughs] I heard about somebody else having that for a funeral recently, actually, for their mother-law I think [laughs].

But it does take off the pressure. And I’ve only organised one car, for my children. And I hadn’t realised that that would save a lot of arguments. Because apparently there’s family members who think they should be in a car, and then you have everybody, before you know where you are you’ve got everybody wanting one. So I’ve just specified one car, where I would like people to go afterwards for something to eat. So that’s all made, the choice is made. And then the time of the funeral, to allow the family to travel up. And one of the things I hadn’t realised was that to register a death you’ve got to be 18. So in the event of me dying before my children reached 18, I had to make sure I nominated another person to do that. And that was a detail I wasn’t aware of. So I mean, my son is 18 now, but he wasn’t when I made it. So then I had to broach the subject with friends, ‘Would you mind registering my death?’ [laughs]. And obviously a few of them said, ‘Oh, no, no, I couldn’t do that. And one friend said she would. She didn’t want to, but she would. So then I could put her name down. And I’ve got copies of that with other friends, so that if anything happened that’s all done, and hopefully everybody’ll just have a good time and not have to worry about things going wrong on us. That’s the way I want it, so.

Have any of your friends found it difficult to cope and so on?

Yes. A lot. And all in different ways. I mean, I’ve got a friend that comes and does the PEG. She is so humorous and she just takes the mickey full stop. But I also know that if I have a bad day or she has a bad day trying to do the PEG, she has gone home and broke down. But I don’t see it. Other, my other friend was fine until over a year ago Cliff Richard tickets went on sale. And the concert was last week. So of course I rang up and said, ‘Oh, I’ve got my tickets for Cliff. ‘When are you going?’ ‘Next November. Well, this was October last year. I said, ‘It’s all right. If he dies, I’ll get my money back. He’s older than me. So I mean, I’m not going to die because I’ll, I can’t afford enough to lose this money. And I hadn’t realised that I hadn’t heard from her for about three weeks. And I kept ringing up and she wasn’t in. And I knew that, because we’d been friends for thirty years, that she wouldn’t not answer my calls. And when I eventually got hold of her, she’d actually broke down. It had never occurred to her until I bought those tickets so long in advance that I might not be here. And she said it wasn’t me, it was her problem. Up until then point, that point the thought that I might not be here hadn’t actually entered her head. And she needed that time out, to get her head round that, and come back and say, ‘Look, I’m sorry, but I couldn’t… So I said, ‘Well, the annoying thing is I’m sat here wondering what I’ve done to you, not realising that something as, a joke like that had had that knock-on effect. And yet normally she’s the one that picks me up.

Do you think it was worse because it was a joke? Did that…?

I think so.

Yeah.

And I think it had obviously never occurred to her before. And I often sometimes just don’t think, but it was just a genuine thing, ‘Well, Cliffs 67. If he drops dead tomorrow I’ll get my money back. And kind of it’s just something, ‘Well, actually Liz might not be here, never mind Cliff.

Well, the difficulty with my father was that he was an agnostic stroke atheist, I don’t quite know what youd call it, and there is a difficulty I think with people who don’t have a faith or a philosophy about that, because when you get to the stage where you are facing death, there doesnt seem to be any support. You know, if hed been a Jew or a Catholic or a Hindu perhaps, you know, the rabbi or the priest or whatever would have come in to talk to him and he would have felt – I would hope – very comforted by that.

But for him death was going to mean nothingness and I don’t quite know how you support people through that. That isnt, again that isnt what I think and we had several discussions and then we had very moving and tender father/daughter talks about dying. And I did try and put my point of view because it’s the only one Ive got to put in the hope that it, it would in some way comfort him. But I know that he was frightened of dying and I don’t know how you help people who are frightened of dying and who don’t believe there’s any sort of afterlife. I don’t know what you can do. But there certainly isnt anything coming in from outside if you like.

And I have to say – and it’s completely out of context – that my mother was in a cancer ward with brain tumours following breast cancer and there were some very tactless occasions, you know, when there was certainly nobody visiting her except the woman who wanted her to make a Living Will.

Hmm.

[laughs] I mean, where are you where are you coming from with that, then?

Not the support you…

Not exactly, no, no. Quite funny, I mean you know a lot of things you laugh at afterwards. But I suppose that’s a feature of our culture and our society now, that we pretend dying doesnt happen and then when you are dying you, it’s new ground.

Hmm.

And it’s one of those things where those whove died cant come and tell you what to expect.

So other cultures might handle death better?

Well, I suppose I fondly imagine that some other cultures do, you know, perhaps the Hindus and, well, believers of any faith presumably are going to handle it better.

But I wonder if for instance cultures where they can be more open and dramatic and over the top about their grief, which we find a bit strange in England, whether they actually feel better. Whether they can, you know, be more upset more easily, instead of having to hold it all in because it’s visiting time, like English people do, and skate round the subject but not talk about it or not know what to say.

Jenny later added the following in writing after her interview

This expands on preparing for death in a spiritual sense, and is a purely personal view of how it was for us, not right or wrong, not what you should or shouldnt say; just what happened to us.

My father was an aircraft designer, engineer and inventor, a scientific, logical, brilliant mind Clever man, I inherited few of his gifts. As the MND progressed there were times when he could not face his impending death, and we would talk about what happens when you die, he from his entirely logical, atheist standpoint, me from that of my conventional religion/belief system. He viewed his death, at these times, with a mixture of practicality, on Wednesday I shall have a bath and watch the news, and then I may die, and great fear.

He was very frightened of dying, I am not. I found his fear upsetting – no, it tore me apart, and I was desperate to help him, I wanted to be there to face the end with him, without flinching, to show him it was all right. Our talks were simple but unemotional; we spoke in truthful ways without artifice between us, absolutely bare to the bone, about something of which we had little experience; that society ignores, for which, each time it happens, there is no preparation. I believe that death is not the end. He didn’t. Odd that I didn’t believe in euthanasia and he did; my religious arguments sounded childish and glib; inadequate clichés in response to his intelligent, intellectual views. In the end, all I could say to him, as I held his dead hands, was, I know it isn’t the end, with all my heart, and all my soul, with every fibre of my being, this isn’t all there is It is my truth, unscientific and unproven, feeble though it sounds, and all that I could say to him to battle his biggest terror, his dreadful thing approaching.

The disease robbed him of all movement, of his voice, of the expression in his face, but his character, his foibles, everything that was him, were all still there, buried inside his skinWhen Motor Neurone Disease won the battle, his spirit, his personality, everything that was him, was not obliterated, he just became bodiless.

Those were the hardest talks I have ever had. Two people facing the unfaceable. I stood my ground in good faith although painfully aware of my short comings intellectually and spiritually. Since he died I have reviewed my religious beliefs, extending rather than abandoning them. What I have drawn from all this and would want to pass on is, Do not be afrai.

I know nobody’ll like this – but I’m all for popping off to Switzerland, I’m afraid, if.

Tell me more.

Well, as far as I’m concerned, if I get to the point where my quality of life is poor and I haven’t got the independence, I don’t think that your family has a right to tell you what to do or what not to do. You are your own person. And, all right, you might deprive them of their mother or their wife or whatever, but you, you can’t live an existence that is so poor just for other people’s benefit. And if it got to the point where I had a really poor quality of life because of the progression of the disease, I’m afraid that’s where I’m going.

Have you talked to family or made any arrangement?

Yeah, I’ve told them, in no uncertain terms. And they just don’t want to talk about it. And obviously for the time being we won’t. But if in the years to come that’s what happens- I felt that the depiction of the motor neurone disease woman by that Gillian what’s-her-name on Holby City was a complete load of rubbish, frankly [laughs]. And in fact my husband was away when she popped off to Switzerland, and he rang me up and said, ‘Are you all right?’ And I said, ‘Why?’ And he said, ‘Because that’s been on. And I said, ‘Oh, I didn’t even watch the end of it,’ I said. ‘It was really boring. Because it just wasn’t a true motor neurone disease sufferer to me. It is very good that they want to put it in the news and try and tell people more about it, but I felt it didn’t, it didn’t enlighten people properly. Because one minute she was on a ventilator and the next minute she was ringing people up on a telephone and, you know, walking with one walking stick. Well, excuse me, but if you’ve got full-blown ALS and you haven’t got, and you’re on a ventilator, you certainly won’t be walking about with a walking stick. So the whole thing was all a bit of a joke. Because one minute she couldn’t talk and the next minute she spoke normally and said, ‘Oh, hello, I’m popping off to Switzerland now. Do you want to come with me?’ So it was all very bad. In fact the best example was on ER. And in fact I found that by mistake. I was sort of flicking through the television channels and suddenly there was this guy in the final throes of motor neurone disease. And that was, I’m actually a bit disappointed I didn’t see the whole thing, because you could have seen what it was like, somebody dying. He obviously didn’t get killed, he just died. But’

Have you got as far as writing anything down about it, or is that something for the future?

What? What I’m going to do?

Yeah.

No, I haven’t actually. I started writing a book about my disease but I’ve only written one page. Because I write a lot of poetry, so I thought I might write a book instead. But, no, I suppose I ought to do that, have a sort of a living will, so to speak, and say, ‘That’s what I want. But, yeah – [brief microphone interference] and in fact my daughter, my youngest daughter, the other day she said, we were talking about cremation and I said something about being cremated and she said, ‘Oh, yeah, Mum, but I’ll make, have you made into a diamond. She said, ‘So you needn’t worry about where you’re going to be scattered. I said, ‘Oh, that’s all right then. Thanks. So we just joke about it, really. Because you’ve, you’ve got to, haven’t you? Because if you know something, it, it’s really odd because everyone knows they’re going to die at some point. You don’t know whether you’re going to be run over by a bus tomorrow or, or what could happen. So me saying I’ve been given a, an illness that says I’m going to die, well, of courseeveryone’s going to die. So the fact that I don’t know when I’m going to die, I suppose it’s all a bit silly worrying about it. But what worries me about it is the way I’m going to die. And I don’t want to die drowning because I can’t breathe, or just sitting there having someone shovelling food down my throat. You know, I just don’t want that. And the indignity of it is just too much to bear. I’m, I’ve lost dignity as it is because of things having to be done for me and having to sit in a wheelchair, even though I wheel myself. I just don’t want the indignity of dying like that. So I’d rather just say, Right, thanks very much. I’ve had a good innings and I’m off now. And that’s it.

Footnote: Media stories about MND are not always realistic. Given the variable way MND affects each person, it is theoretically possible for someone to be on a ventilator but still able to walk with a stick, but it is more likely that the person would have very limited mobility at this stage. It is unlikely someone would stop using a ventilator once they had started using one. Drowning or choking is feared by some people, but with good symptom control and palliative care it is extremely rare and very unlikely to be a cause of death.

I mean I’ve had a good life and although I’ve had some bad things have happened like my parents dying and that sort of thing but for the most part I’ve had a very happy life and I’m grateful for it. And the man said three score years and ten and I’ve had six years bonus. So all we can all ask for is an easy get out at the end of the day. I would very much like if I was sensible enough if I could say to my doctor or consultant, ‘Switch me off and he was able to do it because you wouldn’t let a dog live the way some people do and when you hear these people say it’s not ethical and one thing and another, usually they haven’t got MND and I think that that should be everybody’s basic right to say, ‘I’ve had enough. I’m, I’m very strong on that. Everybody wouldn’t agree but I think if those who desire that then it should be available.

Communication became exceedingly difficult and she decided enough was enough. So at that point she decided to stop eating.

And from that point then obviously it was just a matter of time, a short time, and so we reconciled ourselves to that. And because we’d always felt that what we wanted to do was to help Di die well. We’d both agreed. We decided that best thing to do was to, to make sure that she could die at peace without a lot of attachments, clingings. So I talked to her children, her son and daughter, and we both agreed that we wouldn’t, we would allow her to leave us. That we wouldn’t make a point of you know sort of our feelings about holding on to her. We talked to Di and, you know, we were all grief stricken of course. And we agreed that was okay, we would show that. But we would try not to cling on to her.

And so Di and I decided to say goodbye you know, almost in a formal ritual way. So that there would be no sort of last minute you know sort of longings and clingings on between us. So we had a one evening when she was lying in the bed and was sat down beside her. She was sitting up and I just talked a bit about how we first met. And then we said goodbye. And I gave her a last kiss, a last lover’s kiss, I kissed her again afterwards but that was the last time. And that was the most, of all the difficult moments that was the most difficult, but I am so, so glad we did it, so, so glad we did it. It was, it just was moving and just very meaningful you know, it rounded off our relationship. And so we were able to then continue and look after her until her death without any kind of, that awkwardness that emotional difficulty, you know, with that a long drawn out goodbye might’ve engendered.

And Di was remarkably brave. As I said she was quite extraordinary. There was no point at which there any ‘why me’s?’ or ‘it’s not fair’s’, nothing of that. She had a way of facing difficult situations, turning them over in head and making them all right with herself. And I saw this all the time. And it made life so much easier for me of course I don’t know what it would’ve been like if she’d been distressed and clingy and angry. She wasn’t, she wasn’t at all. And like she said it was it was a wonderful experience. It was I, I’m afraid of being misunderstood by saying that. But you know I had some bereavement counselling from the local hospice who were extremely good all the way through.

So from the time when she stopped eating to the time when she died was about three weeks. And on her last day we were short of provisions, her daughter was here with me and we were short of provisions and I thought well I said, ‘Well I’ll need to nip out to the town for half an hour and get some. And she said, ‘No, no don’t leave the house, don’t leave me’, which is not something she would’ve normally have said. So I think she realised that her death was very close. And after a little while she just started gazing into the middle distance quietly and for the first time it seemed to me that she actually relaxed because she was in so much discomfort, you know.

She was just skin and bone really by that time for not having eaten. So the discomfort was continuing. She didn’t want drugs. She didn’t want drugs at all even painkillers because they made her woozy and clouded her mind. And she had always wanted a conscious death. And also any communication that she needed to make was hampered, you know, with the letter frame. She would find it very difficult if she was woozy like that.

She just drifted and for about a couple of hours she just stared in to the middle distance and I sat with her. And her daughter came to her. Her daughter camethrough at a certain point and sat with her as well. Her breathing became quite deep and relaxed actually and at a certain point there was a last breath. And then she swallowed and it was just reflex, she swallowed about five or six times the next minute. But the life was gone out of her and I’m at lost for words really at that point. We kept her body at home for twenty four hours as she’d wished, dressed her. We’d all organised it.

On the Tuesday I think she was out of it most of the day because we’d given her too much of this relaxing drug. Wednesday morning when I got Luise up to take her to the toilet she said to me, ‘You must phone the specialist nurse and see what she can do for me. And so I did that and she came early in the morning, also there was an Iain Rennie nurse in attendance to inject drugs into her.

And yeah, that was it, and the last few days they were injecting, instead of giving her pills they were giving, injecting this ‘just in case’ drug, I think really it, it’s to, really to relax you and, sort of take away any pain. I think it’s a drug that they give you when you’re in your last hours of your life really. I didn’t know that at the time. I mean, all that I’m saying to you is, you can’t really imagine what it’s going be like. It’s, you know, and you don’t know how you get through it but you do. So the nurse arrived early in the morning. Spoke to the Iain Rennie nurse, and then she left and then the specialist nurse took me to one side and she said, ‘Roger, Luise is desperately ill. You don’t want her to go to hospital?’ And I said, ‘No, and she said, ‘Well I think I’m going to have to ask you to get your sons home. So, I phoned them up and [name] my youngest son was working in London and he came home immediately and my other son at [town], working in [town] he came. And during the day, Iain Rennie would pop in to see how Luise was and administer the injection. And [son] said to his Mum, ‘Would you like the Last Rites, Mum?’ So, he phoned up the priest and, and this was probably about three oclock on Wednesday afternoon and the priest came up and gave Luise the Last Rites and it was a wonderful ceremony. All during the day, daytime we were, sometimes there were just the three of us, me and the boys and their mother, other times there’d be one, you know, just talking to Luise and holding her hand, and that went on all, all through the day. And then ten oclock at night, an Iain Rennie nurse was in attendance. And, so about midnight I was still sort of very active with Luise, moving her feet around and her legs, try and make her more comfortable and eventually because we were, we were sleeping in the same room together so I could monitor her. That was five months we were in the same bedroom, and I went to bed about half past twelve that night, and the Iain Rennie nurse was popping in every two hours to see whether Luise was okay and at half past three that morning she’d been in at, no, I think she’d been in at two oclock, and then at, and she came in again and Luise had passed away. I won’t say peacefully because, I don’t think it was peaceful if you can’t breathe, because it’s the collapsing of the diaphragm, the muscles that work the diaphragm just give out.

I think that we should’ve read the signals. The doctor should’ve read the signals, the GP. Again it’s resource driven and it might be different in different parts of the country. But we couldn’t get home visits. We had to fight to get him to come here. We would be asked to take her into the surgery and we said, ‘Quite frankly if we have a choice of taking her to the swimming pool or taking her into the surgery, we’re going to take her to the swimming pool, because if she’s going to expend that amount of energy she might as well be doing something she enjoys, rather than going into a waiting room that’s probably full of coughs and colds which might infect her with something she doesn’t need at this moment.

We eventually got a house visit, only one, from the GP that was dealing with her, and I bullied him, almost had to bully him into coming out, when she was having breathing difficulties the day before she died, and the only reason he came out he was doing another house call which was in his mind legitimate because it was a new patient and it was quite urgent, within the area, and he said, ‘I’ll call in to see you. But had it not been for that, he wouldn’t have come here on the day before she died, the day in fact that she probably died. And I particularly asked him, ‘What happens if we have an emergency?’ It was coming up to New Year, and this was on the twenty-ninth of December, and I asked him what would happen over the next two days, if something really did deteriorate, how would we get her admitted to hospital, what would we do? And he said, ‘You don’t have to worry about that, I’ve examined her carefully and I don’t see any long term problem here. And that was it, and so my wife and I thought, ‘Well, we’ve done as much as we can here. If he thinks it’s okay and it is just a panic attack which she can overcome by people talking her through it, then we’ll just have to cope and go through. But that night she died. So it’s difficult.

If we could’ve done it differently, I think that when the carers – parents in this case – have been dealing with their daughter, or the patient if it’s an outside carer, for the length of time that we were, and as intimately as we had been, that if the carer starts to say there is something amiss then the system has to cut in. The system should really react far more rapidly with much more resource than it did. It can’t run along tramline’s. If people who are, intelligent people have been dealing with the illness over a period of months say, ‘There’s something not right,’ then we should get instant response and we didn’t.

Well, again, you know, friends rallied round, you know, afterwards and that was good. I had one particular friend who rang up every night and he came over quite regularly as well. We went out together occasionally. He just allowed me to talk endlessly about what was going on.

And I got very, became – after Di’s death I became very close to her son, [son’s name]. In a funny sort of way, I mean our relationship had always been mediated through Di and because she was nine years older than me, he’s only – I mean he’s not my age but he’s not young enough to be my son in a way. He’s my stepson but he’s quite, he’s quite an old stepson. And we, so we got very close and that was very, very helpful and we were able to talk a lot about, about Di and about her life and about our relationship with her, which was very good. It was very helpful to me.

I think what was difficult was in the first early stages was a simultaneous sense of presence and absence. I mean, she was present in everything in the house, you know, because you know our lives, our relationship kind of entered into all, everything had a memory attached to it. And had she walked in the door at that point I wouldn’t been surprised, you know. She was still very present to me in my mind and my imagination. But of course she was also very absent. And the sense of her presence often brought up a sense of absence and it became very, I was very confused.

So it was really important for me to talk about those things. And the hospice continued the bereavement counselling once a week for me and for I think twelve sessions after, after she died. And the counsellor was very good and that was very useful. She gave lots of useful feedback. She was, she, she took both, she, she had a very nice balance between taking a therapeutic approach where we were talking about my feelings, how I how I was reacting to the circumstances. And practically, sort of practical counselling is what you This is what is available to you as well can I do this, she was actually also offering to help as well and that was very supportive as well. And because it was also the hospice where Di had, had been every week and I’d been to take her and visit her there, there was a sense of continuity about it which was good.

And it’s put me in touch with family and Di had Di had a lot of family over in America and Canada. Her mother herself was Canadian. And I got really close to them and that’s been very supportive for me. And it’s a long, long process. I mean, it’s six months now since Di died and really, I mean, that’s really only a very short time. So I’m still living with her in my head and it’s like I’m still, she’s still present in the house. That, that disturbs me, I’m not quite sure what to make of that. I think, I think it pulled a plank out of my belief system as well when she died. Somewhere deep down there’s some foundation which I’d kind of built a belief system, because I had no belief in life after death at all. And yet for me somewhere she’s still around, in a kind of space that goes beyond what’s true and what’s false, you know. It doesn’t matter, you know it’s like another universe in my brain that’s just opened up where she exists. And I have a photograph of her in the front room and I come in and always talk to her when I come in during the day. Yeah and that’s, that’s okay, that’s fine. That’s a way of dealing with it. That’s a way of dealing with it you know and while I’m talking to her she’s real and she’s present and when I’m not she’s not, she’s not. You know, it’s strange.

But having, having friends around was important and also having solitude was important. I ride a motorcycle and that’s, that’s been quite a useful thing for me because I can go out on my own. And if I want to I can rant on inside my helmet and nobody knows [laughs]. I can get angry or upset. Get angry at the world for taking her away or I can talk to her in my helmet and nobody knows [laughs]. I’m out there and on my own and that’s nice.

Support of friends and neighbours and family, yes, very important, and it’s important that you include them at a very early stage. We also let her former school and her former college know about it all the way through, so that they were kept up to speed and they didn’t send us anything that would be embarrassing for them, and I suppose that the reward of that was the fact that probably about two hundred and twenty people turned up for her funeral. And we learned lots of things about her, which we probably wouldn’t have known, and nor should we have done had she lived, and how much of a support she had been to all of her friends, and it was, for us, spreading that word and making sure that people knew what the situation was all the time, it had it’s reward at the end of the day for us.

That’s something you definitely advise other parents to do?

Oh definitely. Absolutely, absolutely. Quite the thing to do.

Is there anything as parents that since, since Olivia’s died has, that has helped you, and that you would think parents might find helpful to be able to cope?

Yes. We have gone out of our way to distract ourselves, basically, and so we’ve kept very busy. And that’s not just keeping busy at work, it’s keeping busy in your social life. We made an early decision that we wouldn’t become hermits and although, painful though it may be as I’ve indicated in talking to people about it, once we started going back out to social events, and once we started having people back into the house, which I guess we never really stopped doing, even very soon after Olivia died, we started to get that feeling of support which helped us enormously, and continues to do. So we kept ourselves busy. We always had things to look forward to. They don’t have to be expensive things, I mean I’m not talking about going on expensive holidays and things like that, just events, things that you were going to be doing, going to a concert, going to the theatre, going to visit friends, going to a gallery or something. You know, they don’t have to be expensive things, but things that you are, to start with making yourself do. You don’t feel like doing it, you’re making yourself do it. But in doing it, you’re actually opening yourself up to good events, it’s something that’s bolstering you emotionally, and things which put the loss of your daughter into perspective. You will never lose the love that you have for her. You will never fill that gap that she has left, but you learn to live with it and to appreciate it.