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. 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. 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. 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.
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. 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. 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'. 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. 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. 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. One man singled out the support from local district nurses. 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.
A few carers who lacked such support told us they had been greatly stressed and felt that could have been avoided. 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. 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 Last updated August Her consultant has reassured her about what the end of life will be like. She has some faith, but View full profile. She knows she's dying and so do her friends. It's frightening, but everyone has to die and she's 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. 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? 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. Religion is not important to him, but he believes in some kind of entity. He sees illness and 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. Her quality of life is still good, but she's starting to worry about what lies ahead.
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?
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?
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. I was only banking on having a summer to summer, and you know, hmm, winter's going to be hard.
I would rather really opt out of that. 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, and I think, 'Phew, I wouldn't have wanted to miss that. 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. Coming to terms with the loss of a future is one of the hardest things, especially not seeing his You're invincible, aren't you?
You'll go on for ever. And that really is one of the hardest parts of it. Little things you know you'll never do or you'll never see. It's not about regrets. It's really about coming to terms with the future you won't have. And that's hard. We have a great present, in spite of the things that aren't right with me.
But it's knowing that ultimately there isn't much of a future. We won't claim our pension together. I won't be there to celebrate my son's first job or give my daughter away. Compared to other illness it's a relief to have some certainty and not be on a roller coaster of I think in a way Bill feels that he's not going to be stuck.
Somebody in our group has had MND for, I don't know, fifteen years or so, is a young woman and is stuck, completely immobile, with twenty-four hour care, uses a computer as a communication device.
And I think in a way we're going to be spared that. You have to kind of count your blessings don't you? On the carers' course there were three women whose partners have MND. The others were all cancer sufferers. And we've concluded to ourselves that it was sort of liberating to know that there was no pain, there was no ghastly intervention. There was no roller coaster of sort of hopefulness and disappointment, that it was, you know, the path was kind of clear. However many plateaus there would be, you know, this was the storyline.
And in a way we were quite grateful for that. We weren't hoist on aggressive treatment and hopefulness or anything like that, and that was quite good, I felt. We've all felt it actually. She has planned her funeral with the funeral director so her children don't have to worry about 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.
Can I just leave it? 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]. Weakness and the role of exercise A person with MND faces increasing muscle weakness and reducing functional ability and challenges the professional team.
Psycho-social aspects of care The psychological support of the person with MND is very important. End-of-life care As MND has no curative treatment and has a prognosis for many of only 2—3 years, end-of-life issues may need to be considered early in the disease progression, particularly as there may be delays in diagnosis so that the disease has progressed by the time the diagnosis has been made.
Conclusion All patients with MND will benefit from palliative care and all involved in patient care should be able to provide a palliative care approach — listening to the patient and family and assessing and managing issues — physical, psychosocial and spiritual. References 1. Turner M, Swash M. The expanding syndrome of amyotrophic lateral sclerosis: a clinical and molecular odyssey. J Neurol Neurosurg Psychiatry ; 86 : — Oxford: Oxford University Press, 6. A controlled trial of riluzole in amyotrophic lateral sclerosis.
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In with the hurt and anger there were shining lights that stay burned on our memories. My sister Clare had got engaged the summer before Mum's symptoms started, and from that first day after the diagnosis, we used the nuptials as a way of distracting ourselves, and I know my sister is so happy that Mum could share in her special day.
Other high points were our last family holiday to Provence — the smell of lavender now always a reminder of her — and the return of my brother, Paul, from Spain, where he had been living for work. He moved back into the family home, providing invaluable support to Mum and Dad.
From everyday tasks like helping with the cooking, to being someone else to talk to at the end of another emotionally draining day, he was a rock for them both.
My dad not only had to deal with the news emotionally, he had to adjust from the role of husband to carer, giving up his job of 27 years as a chemist at Bentley Motor Cars. It was an emotional rollercoaster, as he suffered the torment of watching the woman he'd met as a teenager waste away before his eyes, while he survived on a few hours sleep each night and got to grips with various contraptions intended to make life easier.
He was constantly pushed beyond what he believed he could cope with, arriving at a situation one month that seemed as bad as it could get, then dealing with a further deterioration just a few weeks down the line. My mum died in January in a hospice in Cheshire, after going in for respite care. She was 55 and I was The decision to move her from home was another excruciating element to this ordeal, as dad fought feelings of guilt, versus the physical need for a break.
On reflection, I think we're all relieved that the end came while she was there — the alternative was likely to have involved panic and hysteria as we inevitably wondered whether there was something more we could have done.
Of course there wasn't. There never had been anything more than trying to make her more comfortable. This helplessness and lack of hope is what makes MND so especially cruel. That's why news of Europe's first research facility for MND is so important. Building work started this summer on the Sheffield Institute for Translational Neurosciences, a place to focus energies and resources to progress treatment into the disease, along with other neurological conditions including Parkinson's disease and spinal muscular atrophy, a childhood form of MND.
Until now, investment has been severely lacking for a disease which kills around 35 people a week in the UK — with another 35 diagnosed.
After becoming frustrated with the limited outlook for patients as a trainee neurologist, she has dedicated her life to MND research. As a young trainee my interest sprang in a way from a sense of discomfort or failure as a doctor.
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