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Jenny - Interview 01

Age at interview: 49
Brief Outline: Jenny is the daughter of a man who was diagnosed in 2001 with motor neurone disease at the age of 81, and who died 4 months later. He was ill for a year before diagnosis.
Background: Jenny is a married housewife and mother of three children aged 18, 16 and 13. Ethnic background/nationality' White British.

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When Jenny's 81-year-old father returned from six months abroad, it was clear that he was having problems walking and using his hands, and his speech became slurred. His GP referred him to a neurologist and after 2 weeks of tests in hospital he was diagnosed with MND. The family were told the diagnosis before he was, and looking back his daughter thinks that he should have been told straight away.

To his family, his deterioration seemed very rapid, and they were concerned to find appropriate care for him as soon as possible, although he himself found it hard to believe the diagnosis. He spent five weeks in a stroke unit while the family searched for a place in a nursing home able to accept people with MND. Then he was moved to a hospital neurology unit, where many of the patients had severe brain injuries and the staff were experienced in looking after people with paralysis. By this stage Jenny's father had no movement left in his arms, legs or body, and within two months he also lost the ability to swallow and speak. He found it very hard not to be able to communicate his needs or feelings effectively, or express humour. His daughter felt it was not until he lost his speech that he really accepted how bad things were.

Jenny was most worried about how he would die and was afraid he might choke to death, especially if he was alone at night. She believed he was also very frightened of this, although he did not want to talk about it much. The family also had discussions about whether or not they should give permission for doctors not to resuscitate him. Her father had always said he would not want to be kept alive if things got really bad, but he still felt he had not got to that point and he did not want to die. In the end, they did not need to make a decision because he died peacefully and suddenly one morning. She wants other people to know this and not be afraid. She found it especially hard to know how to support him in facing death because he had no particular belief system or faith in an afterlife.

Jenny and her stepmother were glad they were able to spend a lot of time with him in hospital. Even in units where staff are trained to care for people with paralysis and communication difficulties she feels they do not have sufficient time, and sometimes make assumptions that someone is less aware than they really are. Her message to the health service is that staff need to be able to spend much more time and effort communicating with patients, reassuring them, finding out more about them, and talking about more than just their physical needs.

 

She thinks her father was in denial about the diagnosis until he lost his speech. He said they...

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And what was his reaction?

'You're wrong.' [chuckles] She had to tell him that he was definitely going to die and he said 'It, it can't be. There must be something you can do.' And she said 'No, there is absolutely nothing,' they could do and he said 'But there must be.' 

He, he was an inventor and mechanical engineer and he, he could think about all sorts of things he could do to build you know artificial legs that were driven by electronics and do the walking for him. And I don't think he had really taken on board [coughs] what it would mean for the rest of his body as the disease progressed and of course nobody really knows about motor neurone disease until they get it [coughs].

Have, how long did this sort of denial go on for and how did his emotions change?

I think he, he was what I might term in severe denial probably for about two or three weeks where we, it was very difficult to talk about anything because he wasn't having it that he was likely to stay in. So we were having to deal with his long term care whilst at the same time he wasn't, he couldn't see that there was any point in organising that because he wasn't going to stay in hospital or in a nursing home or any of those things, he was going to go home.

But he was already too disabled for it to be possible to look after him at home. And so, so it was very, very difficult to have a dialogue about those things and he was still very much a man over whom you could not talk or about him, you could not talk without involving him and at the same time it was very difficult because he wasn't facing up to what was going on.

And I don't think he did, I don't think he really, really took it on board until he couldn't talk any more. And I think there was, there was an awful realisation that that really was it, and that was probably about two weeks before he died. So we had a period of four months.

 

Looking back her father had several symptoms before they noticed something was wrong. It was hard...

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Well with hindsight you can look back about a year and say, 'oh well he used to go a bit unsteady on his feet', I think he fell over once. His, his walking changed so that he was sort of flat-footed like a robot - instead of doing heel/toe he was shuffling, shuffling along, but then he was old. I mean it's very difficult to distinguish between what is getting old and what's unusual. I suppose he got a bit clumsy, because his fingers didn't hold cups, and things but again you, you didn't really notice that. And he seemed to get a bit more tight-lipped in the way he talked but because he was a Yorkshire-man that's not unusual either.

 
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She wanted to ask what it would be like for her father as the end approached, but felt it was...

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The thing that worried me most of all as things progressed, and they were progressing quite quickly, was as I was there with him nearly every day, was how was it going to be at the end and I couldn't find anybody who would tell me. I spoke to the staff, I spoke to the doctors, and they were evasive. And I joined the local branch of the Motor Neurone Disease Society and they were very, very good but it's very difficult to ask in front of people who are suffering from motor neurone disease, other people who have lost relatives to it, what happens, and it's tactless and you don't do it.

One other person whose husband had died said to me briefly 'Oh he just died,' and then that was it, she didn't want to talk about it any more, and that was at a motor neurone disease coffee morning. And the woman who ran the local branch was very, very good and wonderful and I had her telephone number, and I could phone her at home and all those things, but she was evasive. And I suppose at the end of the day you just can't say what is likely to happen.

 
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Her father was frightened and frustrated that he couldn't communicate. He could not use a...

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So he'd spent five weeks in a stroke unit and then he was moved to the neurology unit'. When my father went into that unit he had no movement left in his arms or legs or body. He was there for probably two months and in that time he lost the ability to swallow and talk completely. I saw a lot of things in that unit that were very shocking but changed the way I thought about the way that we treat people who are completely paralysed. And about the needs of people to communicate and - particularly as I was spending every day with my father - how just because you can't talk any more you still want to tell jokes, you still want to talk, you still want to say things. And the onus is on the person sitting with the person who can't talk to enable them to do that. And that requires a lot of energy on the part of the other person. For some of the patients who, who could perhaps only move an eye ball they required someone to come and go through a spelling board with them to be able to spell out a sentence like you know 'I've got a headache,' and I'll leave it up to you to whether you think staff have enough time to go in and do that.

We really managed up until about two weeks before he died being able to work out what it was he was saying. But he wasn't going to go down the route of one blink for 'yes' and two for 'no'. That was his block, if you like, because we had reached that stage where we were going to have to ask twenty questions and get him to say 'yes' or 'no' to them to find out if he wanted a drink of water, for instance, or fluid or painkillers or whatever. And he found that so awful and frightening.

I think you really have to look upon people who can't move or communicate, you must assume that they are aware, even if they don't appear to be. You must assume that they can feel, even if you think they can't'.I know there are a lot of difficulties caring for a person like that, but one of the most important things for that person is to be able to talk, however they do it. And if they need someone else to allow them to talk, then I think perhaps they need the opportunity to do that more often than they are getting. Otherwise whole days will go by when the only conversation has been 'Do you want a drink?' I mean, they may as well be in solitary confinement.

Other motor neurone disease sufferers that I've seen have had a sort of keyboard that they can type out relatively quickly, even at the speed almost of talking, their particular responses. But of course he couldn't move his hands, his paralysis had spread from his extremities, if you like, inwards very quickly, so his arms were completely useless, there was no chance that he could have typed out. And of course Stephen Hawking, I believe he does it with his forehead, doesn't he? But that is quite a complicated machine and I don't know that my father would have learnt to use that particularly quickly. I think it was the single most painful thing for him not being able to communicate, because he was witty and I think that was the cruellest thing to take away.

It's very easy - and I'm as guilty as the next person for thinking it - but when people don't sound right when they're talking or they can't talk any more to imagine that they are stupid. Just because somebody doesn't look or sound the way you think people should look or sound doesn't mean that they are not the same person inside, and they're certainly not stupid.

 
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She worried how her father would die and feared he might choke on saliva, but she wants to...

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And so what I suspected would happen would be that as his swallow disappeared and it was clear that you couldn't clear saliva away quickly enough that he would probably drown, that he would choke, and whether or not he survived a choking session would depend on whether a nurse was available to come and suck him out.

And that was all right when I was there and during waking hours, if you like, or if somebody could see him. But because of course he couldn't ring a bell or summon help at all, if somebody wasn't with him then that was likely to happen and I was frightened about that. I was frightened about witnessing it and I was frightened that that was how he would end up in the middle of the night, alone, and that would be how he'd die. So I did worry about that and that did hang over our heads, this idea that he would be choking on his saliva and, and I would either have to sit and let him go because that's what he wanted, and I didn't know if I was able to witness that, and yet at the same time I didn't want him to die alone and I didn't want to bail out before the end.

You said that's because that's what he wanted, is that what he wanted?

Well, no, we didn't get to that stage, I have to say, because what happened was he just died. He had his breakfast, he watched the morning news and he died. Just like that.

So you didn't have this discussion about what to do?

Well, yes, we had it on-going but we hadn't resolved it. We were talking about it for weeks.

With him?

With him and the staff, and he was saying 'I don't want to go on living when things get bad,' but for him things hadn't got that bad yet. But for me I, I thought how much worse do you think they're going to get. I mean things were pretty bad. But what I'd like other people to know who perhaps have to care for a motor neurone disease sufferer is not to be frightened, because in the end he just died, one minute he was awake and the next he was dead. That was it. He can't possibly have known.

Were you there?

No I wasn't there, because visiting time was at 2 and he died at 10, in the morning. But there had been an auxiliary with him and she'd just gone to get him a cup of coffee. She'd got him arranged so he could watch the news and in that thirty seconds he just went. So don't be frightened because you probably don't need to be.

You said you'd tried to find out how things would be at the end but you couldn't ask in a support group, upsetting, did you try to get information in any other way?

I spoke to the consultant in charge and they sort of skirted around the subject and I suppose that may be because they knew that he would just die. They talked about sedating him, they talked about drying up his saliva with tablets but that brings a different set of problems if you do that. But they didn't really look me in the eye and come straight out and say, 'You're worrying about something that you don't need to worry about,' or 'Yes, he will choke to death and it will be awful.' And I wanted someone to be truthful and I didn't feel they were.

Footnote' Drowning or choking is feared by some people, but with good symptom control and palliative care is extremely rare and very unlikely to be a cause of death.

 
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An auxiliary nurse used her father as a case study for her NVQ and it was wonderful she had time...

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I have to balance out what I've said about one particular nurse with an equal story about an auxiliary who decided to use my father as a case study for her NVQ, and she was absolutely wonderful. And she was the last person to see him alive. She was with him. Because she decided to use him as a case study she was allowed to spend a good two hours with him, brushing his teeth, let's say, or making his bed or something. And she was wonderful. For as many dire people there are absolutely wonderful people and she was one of the best. She wasn't the only one but'

The head man, whatever his correct title would be, would visit once a week - I think it was a Friday' And it struck me that the younger doctors underneath him, most of whom seemed to be women, were completely at sea. They were either nervous or just didn't know how to handle the situation. And so they didn't really visit him much, maybe.

I mean the communication aspect is to me the biggest thing about brain injured patients. I know there are a lot of difficulties caring for a person like that, but one of the most important things for that person is to be able to talk, however they do it. And if they need someone else to talk, to allow them to talk then I think perhaps, they perhaps need the opportunity to do that more often than they are getting. Otherwise whole days will go by when the only conversation has been, 'Do you want a drink?' I mean they may as well be in solitary confinement.

 
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Her father had always said people should be allowed to die if things got bad, but when it came to...

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On top of all that, at the same time we had a dialogue going on between the doctors and himself and myself and my stepmother about whether he had a DNR [Do Not Resuscitate] order on him, whether indeed - well, let's say exactly what they should do legally to either lengthen or not lengthen his life. And my father was a pragmatic, scientific sort of man and he had always said all his life that people should be allowed to die if things got bad. But when he was in that position and things were very bad he didn't want to die. Life still had a lot for him, even though things really were as bad as they could possibly be. He still derived a lot of pleasure from watching the news on the television and I think being able to see the sky from his window and things like that.

 

Her father had no religious belief and she didn't know how to console him. Our society is not...

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Well, the difficulty with my father was that he was an agnostic stroke atheist, I don't quite know what you'd 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 doesn't seem to be any support. You know, if he'd 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 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.

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 doesn't happen and then when you are dying you, it's new ground. 

Hmm.

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”.

 
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