Motor Neurone Disease (MND)

On the medical side, the only hospital in the area offering respite care had the ward shut. So that no longer offers respite care. There are several homes, charity based, mainly for cancer. Because of the weight they've had put on them for care, because of NHS cutbacks in Wales as a whole, they've stopped taking patients with MND and other diseases because they can't afford to do it any more. They're not getting any funding off the NHS. The NHS isn't providing care, respite or palliative, and these charities have been put on to such an extent that they've been forced to close their doors. Now I know that is the case because when my wife went in for an operation on her knee, a very good friend arranged for me to go on to a neurological rehab ward in a hospital in [city]. But attempts had been made to get me in to a cancer home in [town]. By that I mean the MND Association have used that home on a regular basis with our members who need that type of care. And the request was turned down because of [being] overloaded and lack of funds. I put myself in a rehab ward where I managed to do a bit of good helping people worse than myself. I could turn pages of a newspaper for them, magazines.
 

And also our GP has put us in contact with our local hospice, who, and I now get respite. I've been getting it for the last two years. Which has been very good. I get three separate weeks during the year, and then Barry goes in there for a week. And she got that set up for us. And they've been very, very good, very helpful. And again it's, it's so good being able to rely on somebody outside because we don't have any family round here. And sometimes you need to lean. Very difficult. And when the professionals actually let you do that, it's excellent. So build up a relationship. It's important. You're going to need people.

The respite care, what's been your husband's experiences of that?

Wonderful. He doesn't like it, and he doesn't like going there. But when he's there, he gets the best of care possible. He actually enjoys the interaction with other people because his normal interaction is totally just with me. And I keep saying to him, 'Are you not bored with me?' And, and he says, 'No.' But he must be. So he goes in there. And he's a charming man and everybody comes in and talks to him. And it's great for him. He's very happy to come home, but he can't fault it in any single way. The girls are great with him. All the nurses, the doctors there are super. And they'll spend maybe only five minutes a day with him or maybe half an hour, whatever. But he gets not a kick out of it. He, he, he'll never say he enjoys it, but he doesn't hate it. Let's put it that way [laugh]. And he doesn't ever say, 'I won't go in. I don't want to go.' He, he manages. And they think he's great, because he doesn't complain. And he's very good that way. He'll eat anything that's put in front of him. And if the buzzer goes, there's somebody else needs the girls, he sends them on their way. And he always, says, you know, 'I won't come in if somebody else needs the bed.' But he also knows I need a rest.

And how, is it far? How far do you have to go?

It's only two or three miles away which is a good job really, because even though I do get the rest, I still go in every day. 

Do you?

Yes, I can't help it. I'll maybe not go in one day, where I might go and visit my brother in the north of England or I might go and visit one of our sons. But I'm back the next day [laugh]. But I don't have to think about the cooking and I don't have to spend all day with one ear listening to what might be needed. And that's, that means I get some sleep. I mean don't get me wrong, I do sleep. But it's like having a new baby in the house. You are tuned in. And if anything, a cough, a touch, no sound at all, which is even worse, you wake up, you, or you go into the other room, whatever. You're just focusing on it. So it's, and that's 24 hours a day. So when he's in the hospice I know the girls are looking after him. Because they will phone me if they need anything or they think I ought to know anything that's going on. And I can relax a little bit and, and recharge the batteries. And get the kitchen done and do the garden and this kind of thing.
 

Chris' Well, the Macmillan nurse, she just came to introduce herself. And she's there if we need her. She doesn't come on a, you know, because Ken doesn't need nursing as such, do you? But I think she just came to get to know us, because obviously further down the line we may need her a bit more. She arranged, asked Ken if he wanted to go to the day centre, which you agreed to, didn't you? So she set all that up for us. You've only been twice, because then you was ill last week, wasn't you? So you didn't go. So she set that up. And again she's a very nice lady. Ken emails her sometimes, or she's on the end of the phone if I need her.

And will the hospice step in if necessary for overnight stays?

Chris' No, it's only a day centre. Nobody stays at this particular one. It's really to give us a break from one another, to give me a bit of a break, a change of scenery for Ken. [pause for Ken typing].

Ken' You didn't like the hospice.

Chris' I didn't, no, I agree. It's the same one that Ken's brother went to. He enjoyed going, didn't he? He took up painting when he was there. And I think - did he just go once a week? I think he did, and they used to pick him up. And because our son was on holiday, we decided that he would take Ken, which he done, didn't he, the first day. And then he picked me up from work. And he said, 'Oh, I didn't like leaving Dad there. All these old people just sitting around in chairs.' So then I went with Ken, [son's name], our son to pick Ken up. I must admit we got there a little bit late because we got behind a tractor [laughs]. And so you know what it's like when you want to get somewhere. And so when I arrived people were being picked up. And all I could see was Ken in a chair and lots of old ladies with perms, like the blue-rinse brigade. And I thought, 'That's it. He's not coming here any more.' And I got all upset. But Ken wanted to go again, because they were going to massage his legs the next week. So I let him go again. Again our son took him and I went to pick him up with [son's name], our son. And we got there a little bit earlier, and Ken was playing bowls. A lady had picked, playing bowls with you, and he'd won twice. And he was playing with his left hand. So I said, 'The others couldn't have been very good.' But they'd given him a massage. And the nurses there are very nice. And I don't mean to be unkind, and it sounds really horrible, but I feel, they're all volunteer workers, but sometimes I feel they're a bit overenthusiastic, you know. I just feel - like they were playing bowls and the lady that was doing it, obviously she must go about every day, every week, I don't know, but Ken rolled his bowl and it was all this, 'Oh, well done, Ken!' and all this. And I just feel like, you know, you're being, not, I don't know what I mean really, but'

A bit patronising?

Chris' Yeah. And obviously they don't, you know - and they come round with tea and cake. And I had a cup of tea and a bit of cake. And it is a nice place, isn't it?
 

My family know I've got a Living Will (ADRT). And I've got that, and they've got that at the hospice and I've no doubt that I've no problem there, really, honestly. And I hope if that awful day cometh, I'd rather be cared by my friends and family, most of my friends or the hospice' I've made all the decisions that I want. I'm not interested whether my family like it or my friends like it. That's for me to decide. I don't want a tracheotomy and I don't want to be force-fed. I've seen that once and I cannot see the point of it. I don't want my life to drag on when it's not necessary and they're fully aware at the hospice, they're brilliant.

If I couldn't look after myself and I had the choice of a nursing home, well, those that I've seen, no thank you. And the care I've seen, no thank you. I certainly wouldn't go into a hospital. If [the hospice] could, that would be my dreams come true.

I have enough trust in them to know that they wouldn't push me home if they didn't think I could cope and I certainly wouldn't go to the hospital.
 

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.
 

We do know about Living Wills (ADRT), and about, you know, right to die and all of this sort of stuff. But it's not something that we discuss. It's not something that we feel, I don't think, that we need to discuss. Because we're not even placing ourselves there, you know. At this moment in time, I think the place where we're at is we're just trying to manage and be normal. And we don't want to even go there, do we? We're not - we've done other stuff, you know. We've obviously put wills in place for other stuff, which is natural anyway for people. But the Living Will, no, we've not talked about that, have we?
 

It was one of the things that I had hoped the hospice might be the right kind of environment, just to open up a conversation of the possibilities, for somebody thinking about writing an Advance Decision. But unfortunately it wasn't something they seemed able to do. And it ended up being something that was talked about with the district nurse and the GP. I felt that it was actually something that I would like to have managed with Mum herself, and been given the information that I required to do that, or have had somebody in to facilitate my doing it with Mum. Because I think once she'd made the decision to die at home, her death was something we were all going to be intimately involved with.

It was a really tortuous process. I wasn't clear whether the practice had much experience of Advance Decision. Up until that moment the practice hadn't actually had a relationship with the MND clinic. It was me who co-ordinated getting hold of the draft documents from the MND clinic. In fact I typed them up and e-mailed them to the practice. We were given completely wrong information from the MND clinic about what needed to happen to an Advance Decision. We were told that it had to be signed off by the consultant, which in fact is not true, it has to be signed off by a GP. And I looked at it and it didn't seem to me actually to be very difficult. It seemed to me actually a process that we could have had done and dusted very quickly, and the main bit in it really was, 'If you become unconscious, what level of sustenance would you like? Or would you like just to be left alone to die?' And once somebody explains to you what process the body's actually going through at the point, that you lose consciousness, then actually it's a very clear decision. You know, you don't want to hydrate the body; it's completely the wrong thing to do. So this seemed to take about two weeks to go through that. And it was people coming and people going, and it all felt very tense to me. And then Mum's answers went up to the care co-ordinator, and nothing happened, and having thought that going through this really difficult process one actually would get the signed and sealed document back within twenty four hours, two weeks later I was really getting very irritated about it, and I was also feeling very unprotected. My biggest fear was that if there was a drama and I had to call 999, I had no choice but for Mum to go in an ambulance, and everything that that means - the care is out of control. And it felt very unsafe not having that directive backing us up. I mean, my recommendation is that Advance Decision is talked about actually quite early on, no matter how difficult it is to introduce it early because at least you can do it and forget about it. To do it at a time where death is imminent and thinking through these things is tricky. And not having your carer involved at that time because perhaps you feel it's too sensitive or whatever, leaving it so late that the carer feels unsupported, is not the right thing to be doing. It's something that should just be tackled as a piece of business early on, and then put away, reviewed if necessary at some other stage, but not left until the last minute.

And who should that come from? That initiative, do you think?

I suppose it really depends on who is the closest to you in your treatment, which person in the medical world. For us it was a district nurse who happened to be somebody who had worked in a hospice and so was actually entirely capable of introducing the subject without difficulty. But I think if a relative feels capable of doing it, then they should be helped with some level of medical expertise to talk that through with the relative. Because I think it promotes a decision of where somebody is going to die. And on the business of dying at home, I think it’s interesting. I think that there is a focus towards dying in a hospice. For me the idea that you would move a body at a point where somebody is very ill and take them to some place to be managed, to me that seemed completely inappropriate.

Footnote: A doctor does not need to sign and Advanced decision, but it can be used to show that he or she fully understands the person’s wishes about treatment. It is important to ensure that a copy of the Advanced Decision is placed in the person’s medical records, and that the relevant people know that it is there.