Caring for someone with a terminal illness

And I think and for me, there is that thing about the honesty of it was so important to me and, actually, if I can get one thing across to professionals it would be communicate honestly.

So, so when we were called back I knew it was really serious and, at that point, we had a, we had a quite a long consultation with him and he told us that he’d got neurodegenerative disease and I said to him, “Is it motor neurone disease?” And he said, “No, it’s not.” Despite the fact that he was taking blood for something called a SOD1 test, which is a gene which is related to motor neurone disease, which I didn’t realise at the time and I skipped across the car park to get the car thinking, “Okay. I can cope with anything as long as it’s not motor neurone disease, I can cope with it.”

And then I realised that he’d had blood taken for a SOD1 test and I looked SOD1 up on the internet, as anybody would, and it said it’s a gene related to motor neurone disease, so at that point, I realised that actually he had lied to us and I think for, you know, because he was trying to protect us but he, but he hadn’t told us the truth.

We were told that George had a, the consultant’s words were, when George asked him for a definitive, you know, a kind of prognosis, the consultant said, “I would expect to see you in three years. If I see you in five years.” I can’t remember what he said about five years but, anyway, he made out as if he would see us in five years then, “But if I see you in ten you’ll be having significant respiratory difficulties.”

In the event, George died in nine months and, and I can remember being really, really angry with the consultant at the point at which, after George had died I’d bought my Christmas cards from the motor neurone disease association and on the back of the motor neurone disease association cards there was a little blurb that said, “Fifty per cent of people with motor neurone disease die within fourteen months (of diagnosis).” And the consultant just didn’t tell us that and so took away from us the ability to tell our children that actually, it could be an awful lot quicker than three or five years.

Which was the impression that he’d given us and actually, on reflection now, I think probably it would have been far better if he hadn’t given us any time frame. If he’d just said, “I don’t have a crystal ball. I can’t see into the future. I don’t know how long, I don’t know how long this will take.” He told us it was a slow progressing disease and clearly, you know, it wasn’t and actually, from the four months from seeing us in July to seeing us in November, he would have seen that George had progressed quite a lot.

So, so I don’t think he had any, he had nothing to base those things that he told us on. So that made it very difficult, actually, because then my, I kind of didn’t trust him anymore because he’d, you know, he’d told me it wasn’t motor neurone disease when he shouldn’t have told me it wasn’t motor neurone disease and then he told us it was slow progressing and George was, obviously, very fast progressing.

I can remember saying to her, “I think” “The consultant says this is a really, this is a slow progressing MND.” I said, “It doesn’t feel very slow progressing to me. What do you think?” And she said, “No, Jane. It’s not slow progressing.” And so that was that was, although it was difficult to hear, it was fantastic because she was being honest with me and that was, for me, that was really, really important was the honesty from professionals. And I just needed, because I operate from a very honest kind

So have you got any messages you’d like to give to the health professionals or any of the other professionals that have been involved in your life so far?

Right, well the only bit of advice I would give to any of the health professionals. I know everybody’s different and I know everybody maybe can’t take a diagnosis of terminal illness but in some cases when the people actually ask, you know like my husband for example saying, “How long have I got?” and, “What’s going to happen next?” “Am I going to be left gasping for breath?” I think it would be a good idea to tell them the truth as they know it. It may happen to you, it may not happen to you in ninety per cent of cases say for example this happens but something like that that you would know the truth of what is, what they think is going to happen next and not leave you in the dark .

At least if you’re aware of what might happen you can deal with it, you know. But they need to be more upfront I think. I know they don’t like telling you what’s going to happen but if the person asks for it I think they should be told it. Now other people don’t want to hear, I know that, and they say, “I don’t want to know what’s going to happen.” But if the person asks I think they should be told.
 

I think they need to tell people exactly what’s wrong with them. Sometimes they, they tend to sort of, I have impressions sometimes, with some of the ones that we’ve met that they’re looking at the paperwork and they’re not really showing as much as interest, seemingly, as you think they ought to. They’re just pulling bits of paper up and looking at it and reading out what the results were and then saying, and leaving it all to Linda like, “How are you feeling? What do what do you want? What do you think?” Which I tend to think is if they’re the professionals they should know a bit more of what’s going on and give Linda a little bit more help and tell her that, rather than Linda have to force it out of them as to what’s going on.  

So and if your patient is at all erudite and has obviously done some homework, accept that as being, not trying to be interfere with what you’re doing, but as trying to inform themselves as to where we’re going and what we’re doing and why. Don’t be afraid of an expert patient or an expert carer. Take them on board and work as a team. You’re very good, they’re all very good at working in multi-disciplinary teams. It’d be nice if they thought that patients and carers were part of that team.  

And, you know, being very supportive and very mindful and saying, “You must look after yourself and look out look out for your own health and well-being.” And everything and the GP said, as he left, because Mum and Dad were in their mid-eighties when they came here. He said, “This could go on for a long time.” And that really was, I mean he, he said it almost as a throw away remark as he left but it made me switch in my head because I think it was such a tall order looking after them you just thought, “This is, none of us are going to quite survive this.” But somehow that gave me a gear change. I thought, “Right. This isn’t going to finish any day now. Let’s go for the long haul.” So I sort of, in my head, I switched to thinking, “Well, you know, let’s say it could be ten years not, you know, one year or two years.” And it turned out to be three for my, just under three years for my dad and three and a half for my mum. But it was it was a sort of seminal moment that, actually, just the GP saying that.

And I think from that, when I’ve been asked about how services and things might improve for carers, I think it for professionals to always be very mindful of what they say and it can make or break a carer’s day if you get a bit of support or not. Or a comment like that was, I told him afterwards. He was really good and came round and visited after both Mum and Dad died and I said, “When you said that, that really helped me” because it was just how you sort of approached it psychologically I suppose.
 

One of the other uses this site is put to, is of course in the training of the next generation of medical personnel. So if you were going to address them what would you say they would need to take from your journey?

Don’t be afraid of saying you don’t know. The patient would rather hear that you don’t know or you’re not sure but that you’re going to find a man who does or can and the patient would rather have that than a whole load of flannel that doesn’t get them anywhere.
 

I think probably, the truth is, it would have been better if Joyce could have been, if more preparation could have been made perhaps to, she could have gone into a hospice if a week or so before she actually died that would have been, that would have been better. So I think perhaps more experience is needed about the dying process really.

I’m sure that there are many nurses who have nursed dying patients and have been very helpful to them, but their experience of being able to know how long a patient has got and what is the most appropriate support to for them and their families during that final time, I think would be, would be quite, would be very good.
 

It’s always surprised me, well through the MND Association we’ve come to know other people living in our locality who have, who live with MND in their, and their partners. And of course they go to different GP practices and I just wonder what sort of learning net there is between those doctors, you know, given that you’re not going to see many people in your, in your professional lifetime but maybe in the same town there are three or four people with that condition. And what sort of learning net there is, I don’t know. It’s, at that level, that’s struck me.  

It was quite difficult knowing who was responsible for what. Who was responsible for putting a ramp outside the house, so that we could get in and out of the house, up our one step that we have outside.

Because we had a social services OT, we had a hospital OT and I think, at some point, we had a different OT as well. I think a community, health community OT and actually, does it matter who it is that’s responsible? It really doesn’t when you’re the person who is, who is the carer or you’re the person with the disease. All you want is your ramp outside your front door to be able to get in and out of the house. It really is absolutely irrelevant and those discussions that you occasionally are witness to in your own home, “Oh, no. That’s not my responsibility. That’s social services.” Or, “No, that’s not my responsibility.” Actually, you know what, that’s irrelevant and those conversations shouldn’t take place in front of somebody who’s the carer or the person with the disease because you just need the thing put there.

You know, and you’re not asking for something you don’t need and I was very conscious that, actually, there were some people that you kind of felt, I almost feel like I’m wasting my breath and you’re not listening to me because I wouldn’t be asking you if I didn’t need it and I’d much rather not need it than need it.
 

One example was, my father, we had to order his incontinence pads, and Mum would place an order and they promised that every six weeks a new box would come and blah, blah, blah. And it never really happened. Most of the time I was driving down to the local place and having all these incontinence pads coming back in my car because they either forgot, didn’t deliver them or there was a mix-up. We got to the stage where we were purchasing them from our local chemist because they delivered some one day and they just said, Mum said, “But these aren’t the right ones.” “Well we haven’t got any of the others.” But the trouble is the ones they delivered, weren’t, didn’t fit my dad. They weren’t for the purpose it required. My father needed ones that he could pull up and down still.

Continuity and certainly getting back to people when they say they’re going to, not leaving things. You know, you get so frustrated when you think, “Well, I’ve ordered these pads. I’ve seen the order written down.” I used to go down and said, “There it is.” ‘Oh, but we never looked at that bit of paper.” And you think. I think continuity specially with, if you’re dealing with an elderly person, if you’re dealing with youngsters that can actually have the wherefore to get on the phone, my mum’s not very confident about doing that sort of thing and I don’t think a lot of people in near their nineties are. She had no access to a computer, she had no idea. So I would say, you know, you’ve got to, there’s a certain way of dealing with an elderly carer, don’t just don’t assume they know everything because they don’t. They live in a world of their own some of them. They don’t want any help but they know they’ve got to have it. As I say, we were very lucky having a family doctor because he knew my mum as well, so that was good. And that’s all I would say.
 

But the community, the co-ordination between community services is poor and who to talk to about community service is poor. The needs, the need is for a central co-ordinating clearing point. I need oxygen, I need to get some more tablets, I need something to lift the settee up so she can sit down. I need knives and forks with big handles on them. I need some incontinence pads. I want one telephone number, one point of contact and even if they are not the people responsible for doing or providing that service they are, should then be ones that know who is.