Interview 40

Age at interview: 49

Brief Outline:

Daughter of a man who was diagnosed with motor neurone disease in June 2001, at the age of 81, and who died in October 2001.

Background:

Housewife, married, 3 children

Her father, who had motor neurone disease, at first refused to accept that he would die.

And then a nurse and the senior house officer came to my father and we stood beside him and she told him

And what was his reaction?

'You're wrong.' 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 was an inventor and mechanical engineer and 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, 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.

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

I think 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 [hospital]
 

It is very difficult if other family members are told the diagnosis before the patient.

I mean on both occasions with both parents I think one of the very worst bits for all of us was when we knew and my mother and father didn't know. And there was a gap.

Oh you were told before they were told?

Hmm. On both occasions. It is very, very hard to be with somebody in hospital and know and to say nothing.

How long did that go on?

Well it was probably, with my mother it was four days and a similar amount of time with my father.

So the doctors judged it was better to tell you first?

Yes. Hmm.

Do you think that was the right decision?

I've heard friends of mine say the same thing, no I don't think it's the right decision. And particularly, as with my mother for instance, again a junior doctor was sent to tell her and I was told to come in and be with her when that was going to happen and then he didn't come.  And then she grew suspicious, you know 'Why are you sitting with me all day?'

Hmm.

And eventually he came sort of last thing and told her and of course she was very upset but [um] no I don't think that's the right way to do things.
 

Patients who needed help to eat were not always given necessary help due to lack of staff.

Do you want to comment in general about the medical and nursing care?

Well nursing care is fine within, they do what they're told to do. I don't happen to think it's the right thing. And stroke patients get left. If you have a relative to come in that's fine but what if you don't.  

Is this because of shortage of staff or - ?

Yeah.

So were you having to do things for your father that might not have been done at all if you hadn't been there that you felt should have been done?

Well of course he was, they did bath him and they did sort it out so that he could use a bed pan and I dare say they would have fed him if I hadn't been there. I always was there or my stepmother was there. And in practice what happens is the food gets left and left and left until it's stone cold and then about three in the afternoon they spoon-feed it into somebody, and how nice is that?

Hmm.

But then if they've only got two of them [staff] on what else can they do.
 

Her father was afraid of dying and she found it hard to comfort him because he didn't have faith...

We were talking about preparing for death in a spiritual sense. Can you say anything about that in relation to your father?

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. 

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 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.
 

Health professionals must assume that even if patients can't communicate they are aware of what...

So what would your message be to health care professionals and those who run hospitals?

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. And you must treat them as if they were your own new-born child, with as much care. You wouldn't leave your baby in the care of people you didn't know.  

So I mean you either tell relatives that they must have a camp bed in the room or stay with their relative all the time because you can't guarantee their safety or... I don't know what you do, just think, 'Have some pity for God's sake'

Warns that making a will needs special care' because her family had some difficulties.

After his death we experienced a number of difficulties with the way in which my father's will had been written. I would like to pass on some of the information I gleaned, in case it helps someone else. 

Some companies do not allow second or subsequent wives to benefit from their deceased husband's company pension, even if the first wife has died. Unmarried partners are not your next of kin. Your will should take care of your children. Don't think the law will automatically do that, which you had always hoped. Make it clear.