Motor Neurone Disease (MND)
Thoughts about death, dying and bereavement
Many of the people we spoke to were determined not to spend precious time thinking too much about death. They saw themselves as 'living with MND, not dying from it', as one person put it. (See 'Philosophy, attitude and messages to others with MND').
However, given that MND affects life expectancy and there is no cure yet, inevitably people's thoughts sometimes turned to what would happen at the end of life. Attitudes to death are very personal, and are influenced by many factors.
Her consultant has reassured her about what the end of life will be like. She has some faith, but...
And that has taken time?
Oh yes. It will take a long time. I don't suppose I'll get there. I shall try. And my children are obviously very upset and it is difficult to talk to them about faith because most of the younger generation don't have any.
She knows she's dying and so do her friends. It's frightening, but everyone has to die and she's...
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.
Some people reflected on death as a natural part of life, even if they were still enjoying life and it was not something they wanted to think about at length.
Religion is not important to him, but he believes in some kind of entity. He sees illness and...
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.
Her quality of life is still good, but she's starting to worry about what lies ahead. Her...
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.
However, the idea of a life cut short was obviously upsetting and disturbing to many people, both those living with MND and family members. One woman (see Interview 11 - Penny's story) explained,
“My mother couldn't cope with it at all. She was angry. …And I guess the hardest thing for her was the fact that her daughter was going to die before her.”
For people with young children, the thought that they would not see them grow up was especially poignant.
Coming to terms with the loss of a future is one of the hardest things, especially not seeing his...
Some people coped with the knowledge that they were dying by not thinking about the future. Others were glad they had an opportunity to plan ahead, to sort out their financial affairs, to write a will and to have time to say goodbye. One man (Interview 29 - Michael's story) said,
“Unlike certain other conditions I've been given some time with which to organise a goodbye, organise a legacy, generate memories - whatever you want to see it as. You have some time to do certain things - I could have had cancer and been given six weeks.”
Compared to other illness it's a relief to have some certainty and not be on a roller coaster of...
She has planned her funeral with the funeral director so her children don't have to worry about...
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-in-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.
Inevitably death was a mysterious and often fearful prospect. Talking about death to family and friends was harder for some people than others, either because of their own emotions or because friends and family were too upset to discuss it. One man (Interview 42 - Dick and Di's story) said his wife's response to her diagnosis was, “Okay, well, let's just work out the best way for me to die.” He was amazed at her “extraordinarily practical view of life”. One woman said a friend found the idea of her dying more upsetting than she did.
She made a joke about dying and her friend was so upset she didn't contact her for three weeks.
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.
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, Cliff's 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.'
Others said it was not something they wanted to talk about yet, and their focus was still on living as normal a life as possible. Some said they discussed it occasionally, but most of the time it was kept in the background. One man explained:
“We talk about it at times, but it's specifically to do with something or some change that's going on. It's not a daily thing.”
Another man said his wife wanted someone to tell her frankly when her symptoms were progressing, but he found it too upsetting to contemplate what would happen to her.
It is too frightening for him to talk to his wife about what will happen to her in future. His...
She's been to the meetings and can talk with [the specialist nurse] on a very friendly basis. And in fact she got all sorts of information that I wasn't aware of, of the desperate sides of this disease that I wasn't aware of.
I realised that she was enquiring about items that I don't really want to know about, although I've got to know about. But she's sort of taken up that role. So I'm very grateful that, and I had a definite discussion with her on the last time she was down, which was about a fortnight or so ago, about this aspect and I said, 'Look, I'm finding it very difficult to talk about certain aspects.' And she said, 'Well, would you like me to deal with that side?' And she offered to do it. So I have sort of offloaded my responsibilities, if they are my responsibilities, on those sides a little bit. And my daughter has taken them up and is prepared to discuss. Because I think my wife has already asked her to say, 'Look, if I am getting in a downward slide or state, then I would like to know.' And she will be able to communicate probably on a little bit easier basis with my daughter than with me.
I don't know whether that makes sense or not, but that's the way it has developed. And I'm very grateful because I find death and all that entails very difficult to manage. And, those aspects and the serious side of what may happen with my wife if she becomes incapable of moving, losing use of her limbs as well, and all that aspect. I find that desperately frightening and worrying. I may have to face it, and well, I will do when it comes. But to discuss it before it happens is something very hard for me.
One woman who herself believed in an afterlife said how difficult it was for her to console her father, for whom 'death was going to mean nothingness'.
Her father had no religious belief and she didn't know how to console him. Our society is not...
But for him death was going to mean nothingness and I don't quite know how you support people through that. That isn't, again that isn't 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 I've 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 isn't 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.
[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 doesn't happen and then when you are dying you, it's new ground.
And it's one of those things where those who've died can't 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 shouldn't 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 skin….When 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 afraid”.
People's fears or worries were often not so much about the moment of death itself as about how and where it would happen. Some worried about becoming unable to move or speak, and whether they might choke to death. (In fact choking is very unlikely to be a cause of death, though it is a common fear). These fears led some people to the idea of assisted dying or euthanasia, which they felt would give them more control and dignity, and enable them to avoid a long, slow decline. (The word euthanasia, from Greek, literally means a 'good death' or death without suffering, but it is often used to mean assisted dying). UK law does not allow assisted death, but some other countries do permit doctors to help people to die in carefully controlled circumstances. A few people thought they might choose this option for themselves by going to a country such as Switzerland where assisted death is legal. Others felt it ought to be legal in the UK, so that people had a choice, even if it was not something they themselves would want. Many people mentioned the moral complexities and the dangers of abuse, but still felt that people should have a right to die when and how they wanted. Others were opposed in principle (see Interview 21 - Sarah's story).
She feels it's her right to choose when to die, if her quality of life becomes poor. She worries...
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?
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 course everyone’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.
He's had a good life and he'd like his doctors to be able to help him end it quickly when the...
He personally would never consider assisted dying, both for his own sake and his wife's, but he...
Do you think it's something that you would want other people to have the chance to do, even if you wouldn't choose it?
Oh, I think, morally I think that it is actually a simple fact that you should be given the choice, you know. No, I think that you should be. I can understand it in some ways, because the issue is taken away from the person' No, I think that people should be given the chance. I've never been in the position where I've looked at, 'Oh, I wish I was bloody dead', you know. I mean, I wake up in the morning sometimes or in the middle of the night and I'm hurting so much. But I've still never came to the decision, I've never sort of looked at it and thought, 'Oh, I can't have much more of this. I've got to pack it in.'
The Healthtalk website on 'Living with dying' has additional perspectives on this and other issues facing people living with a terminal illness.
Several people were upset that the media always seemed to use MND to illustrate the debate about assisted dying rather than other conditions. This included people who were in favour of an individual's right to choose, whether for themselves or others, as well as people who were against assisted dying on principle. Whatever their personal views, there was a feeling that the media tended to present only the end of life stage of MND, that they did not always portray it accurately, and that they tended to focus on 'horror stories'. Some carers who talked to us after the death of a relative with MND wanted to reassure others who were worried about what death would be like.
Some other family carers also said they wanted honest and detailed information about death but felt the answers they got were vague. It is of course difficult for staff to predict exactly what will happen in each case, however, and carers may not be easily persuaded by their reassurance that death is likely to be peaceful.
One man explained how his wife had chosen how she wanted to die, with no drugs, and how they had said goodbye to each other.
Di decided she had had enough so she stopped eating. They said a lovers' goodbye to each other....
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 came through 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.
Morphine or other drugs are often used to ease symptoms, such as pain, when people are close to death. Some people said they wanted to use such drugs, but others wanted to remain alert. Some said too high a dose could make people feel very strange.
Luise had a drug to help her relax in the last days. She died at home with the support of family...
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 o'clock 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 o'clock 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 o'clock, 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.
Towards the end she was unhappy that her mother was given higher doses of morphine which sent her...
On that Tuesday, we had the GP up and the district nurse up to talk to us about the syringe driver, and Mum asked us to make the decision, and I could see that she was pretty ill. They gave her a dose of morphine on the Tuesday night, and it was calming, it was all right. I think it was Wednesday that [my partner] and Mum and I sat and watched the Gold Cup and looked at hats and had quite a jolly day. We agreed to the syringe driver, which I think was put up on Wednesday, and Mum had always had this hyper-sensitivity to drugs.
They'd been giving her doses of 1.25mg of morphine which is a child's dose almost, it's half the beginning adult dose, and it was enough. When they put up the syringe driver they gave her a 5mg dose. It absolutely blasted her to kingdom come, I mean it was appalling. And she became - it's really hard to describe it unless you've seen it, but she was fazed, really fazed by it, and it was like movement was dreamlike, and yet she was very definitely mentally there. And she was moving her legs trying to knock off some of this sedation, and [my sister] and I stayed up with her all night. We were sleeping in the same room, both of us either end of the sofa, and in a way it was a beautiful night, but so scary, so dreamlike, so very strange. At one point she started this very, very slow breathing and I wondered if she would die, and I hoped she would die. But it was strong, and she didn't die, the next day came. And the morphine wore off, and she had a day of being very alert and very on the ball, very pleasant, and she was - well, the registered nurse thought she was agitated. I didn't, I thought she was just awake. And I thought there was no harm in her being awake because actually that might just give her a better night and the concern was that her agitation might increase. And I have to say it wasn't something I was particularly bothered by. She wasn't in pain, she wasn't having difficulty breathing.
Earlier that evening [my partner] and I had gone out to have a drink, and we were out for about an hour. When I got back the registered nurse had given Mum one of these tiny, tiny doses and it had knocked her off some more but she was okay. I got back and I said to the Marie Curie nurse that I wasn't happy with Mum having top up doses of the morphine over and above what was going through the syringe driver, and that I didn't want her having stat [immediate] doses throughout the night and she said to me, after this dose the registered nurse had given her, she said, 'You know, your mother's fine,' she said, 'She's very calm, she's not anxious.' And I said, 'She's not fine,' and in fact she'd gone into this weird state again. I said, 'She's not, I think she is anxious, I think she is distressed. I think it's too much morphine. She does have this sensitivity to drugs.'
Several people hoped that they would be able to move into a hospice towards the end of life (see 'Hospices, respite and thoughts about future care'). One woman hoped she would be able to stay in the nursing home where she was currently living - as she said, “It's my home”, and she had previously had some distressing experiences in hospital. However, another woman described how her father had died peacefully in hospital (see Interview 01 - Jenny's story). A man said although he was unhappy with many aspects of hospital care, his wife's death had been a peaceful moment.
She died peacefully as he held her hand. He felt the moment of death almost as a jolt. The...
Her death itself was probably the least upsetting. She went very peacefully. I was holding her hand at the time and I'm convinced I felt the spirit pass, sort of. But the experience wasn't what I expected. I would tend to talk - and words that we use, you know - people 'slip away'. It tends to suggest something gentle, slow, almost wave-like. It wasn't. It was a very sudden terrific whoosh. It's not at all what I'd expected. And I was holding her hand and it was. It wasn't an electrical shock but it was akin to it. It was a jolt and a movement like that. Now my daughter was standing at the foot of the bed at the time and the way I reacted I didn't have to tell it. She knew exactly the way I jumped what had happened and she was on her heels.
I wanted to ask you about how the way the health services had dealt with her death and the way she died.
No problems there. They just, everybody just backed off. I think one of the doctors came in and said, what do we want and what do we need, and all the rest of it, and a little nurse came in. Probably unofficially but you can't live in a hospital chair for a couple of weeks and not build relationships with people. And she just came in to, to give her sympathies, support. No I think at that moment in time they need to stop being professionals and be human beings' I think as professionals they're used to death and their attitude was, 'Well, at least she's now out of her suffering.' I think what is likely to affect them more is the effect that the death has on people round about them which included a fair number of the nursing staff because Teresa had been in there some while.
Being able to die at home was important to many people. One woman felt there had been some pressure to move her mother to a hospice and was glad that they had managed to keep her at home in the end. She said:
“Actually I feel it was an incredible privilege to be with Mum at her dying. And that my overwhelming sense is that she was dying. It wasn't that we had a whole lot of healthcare professionals who were rushing around her in the moment of death. So it allowed the person to die.”
There were several accounts of excellent home support from a range of voluntary organisations and NHS staff, including GPs, district nurses and palliative care nurses. One man singled out the support from local district nurses.
“They were absolute amazing. They were lovely. They came in, and they were friendly and chatty and they became part of the household… They just felt like friends coming in… There was no hint of bureaucracy about them.”
Good support at home when their relative was dying was vital for carers. A few carers who lacked such support told us they had been greatly stressed and felt that could have been avoided.
They had to fight to get home visits from the GP when their daughter was dying. Services should...
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.
For many relatives, part of coping with grief was knowing that they had done all they could in caring for their relative during their illness. Some of the carers we talked to spoke about how they had coped with bereavement.
After Di's death he felt she was both present and absent. It has changed his beliefs about death....
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.
They will never lose their love for the daughter, or fill the gap she has left. They decided...
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.
See also sections on 'Philosophy, attitude to life and messages to others with MND' and 'Hospices, respite for MND and thoughts about future care'.
Information about end of life decisions and bereavement is available from the MND Association's website. The MND Association publication, End of life: a guide for people with motor neurone disease, includes guidance about the later stages of MND and dying. Often, knowing the facts can help to reduce fear and help people plan support in a way that feels suitable for them. The guide, Caring and MND: support for you, is also a good resource for carers, providing emotional as well as practical support. Their information resources for children and young people can also help families communicate about MND, to help younger family members cope with the changes happening around them.
Last reviewed August 2017.
Last updated August 2017.