Interestingly, as we kind of went through the journey I actually, came to the conclusion that in some ways, that was better than having cancer because we knew absolutely what we were facing. We knew that there was no option. That actually, you know, we were facing certain death with no treatment at all. Whereas if he’d had cancer, we’d have been striving constantly for the next treatment and the next treatment and the next treatment no matter how narrow the chances were of a cure, we would still have been striving for, for treatment but, actually, the thing that it gave us was this incredible honesty between us in our communication because we had to be honest because it was, you know, we had to say the things that needed to be said because we knew that there would come a time when we couldn’t say them. 

I knew that you don’t get, you know, I’ve worked in the NHS since I was nineteen, you don’t get called back lightly the following day by the consultant, who’s had a cancellation. So, so when we were called back I knew it was really serious and, at that point, 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 hadn’t told us the truth. And so at that point, I realised that actually, that was a possibility of what we were looking, and, and so we then had to wait four months from that initial appointment until the end of November to be seen again, at which point George was really quite disabled and needed a wheelchair to get from the car to the, to get from the car into the appointment because it was too far for him to walk because he was getting quite tired. And we knew it was something really serious and, actually, I knew that he’d got motor neurone disease. I’d diagnosed it from the internet. I’d been on the motor neurone disease association website and knew the type of motor neurone disease that he had and I’d got into my sister’s car, who’s also a nurse, I got into her car one day in October and said, “I know what George has, I know what George has got.” And she said, “So do I.” And we’d both, independently, diagnosed the same thing.
 

The, information was really important to me. I absolutely voraciously needed information, I needed information to be in control. And I think that knowledge to me, knowledge was power and, and as long as I knew what was going on I could be in control of it. George looked, went onto the MND website, took one look at the information and it scared the pants off him and he said, “Jane, I’m not going to, I can’t read this. I don’t need to know.” And relied, I think, on me to, with my nursing background and actually, and I could professionalise it so it kind of made it more comfortable for me. And so I think that was that was his way of dealing with it and it was very interesting to be two of us in a relationship and, actually, one of us to be the one who needed loads and loads and loads of information and the other one not to not to want any information or to want very little information just to know as it happened, kind of things were and actually, yes this is the next step.  

We had a terrible out of hours experience with the GPs. My GP is was part of the out of hours, the doctors who did the out of hours work and he had ensured that all the information was on the system, that it was really clear that George had motor neurone disease, that he was terminally ill and, and what his needs were. And he had reassured both of us of that and he’d seen us very regularly. He was fantastic. Our GP was lovely and, and I rang the out of hours GP when George had been breathless for about four or five hours, no, possibly a little bit longer than that.

So I rang the out of hours GP. The triage doctor, who answered the phone, insisted that I had to take him to the out of hours GP centre, which is about a mile away. It would have taken me an hour to get George dressed and ready and into the, into our van that we had and, and I knew he wasn’t well enough to do that. And in the end, I kept saying to the doctor, “I can’t bring him. I cannot bring him. He’s not well enough. He needs to be seen here. He’s terminally ill.” And I must have said it three or four times to this GP on the end of the phone. Who was the, who was the triage and he was definitely a doctor because I complained afterwards and, and he insisted, absolutely insisted that I had to take him to the out of hours centre.

I in the end, put the phone down because I just didn’t know what to do. I was absolutely at my wit’s end. I just felt so out of control. My, the whole thing was out of control and this is… it was the first time really, that I felt utterly and completely out of my depth. And I just came and I said to my mum, “I don’t know what to do. I don’t know how to manage this.” And then I kind of pulled myself together a bit and I thought, “Okay. He’s been going to the hospice for day care. Ring the hospice. They’ll be nurses on overnight. So ring the hospice and see what they say.” So I rang them up and I said, you know, “I don’t want to take him to A&E. The GP is being absolutely useless. Can he come into you?” And they said, “No, we don’t have, he’s never been in as an inpatient so we can’t admit him.” So that was, she said, “You’ll have to phone the GP, out of hours GP back.”

So I had to phone the out of hours GPs back because I had no other choice. In fact, they rang me when I put the phone down, the phone rang and he said, “Oh, you put the phone down on me.” In some surprise and I said, “Well, I put the phone down on you because you weren’t listening to me.” And he again, when I said I needed a visit, he again said, “You need to bring him to the out of hours.” And I said, “You are not listening to me. I am telling you he is not well enough.”

Anyway, they did finally agree that he could have a home visit and about an hour later, it was like something you hear on the radio and you think, “No, they’re exaggerating.” About an hour later the other GP, who was doing the visit, rang me up and she said to me, “I’d like to listen to his breathing down the telephone.” And, and I said, “He’s on a breathing machine.” I said, “All you’ll hear is a machine.” She said, “No, no. I’d like to listen to his breathing down the phone.” And through gritted teeth I had to say, “You are not listening to his breathing down the phone. You absolutely are not. I refuse to let you listen to his breathing down the phone.”

And anyway, she came. She came out. She was absolutely useless. She wanted to admit him because she said, she said she thought he had a plug of mucus stuck, which he didn’t. He had respiratory failure and, and I said, “No, I’m not having him admitted to A&E to die on a trolley in the middle of A&E. I’m absolutely not allowing that to happen.”
 

While we were waiting for the diagnosis as well, the other thing that, because my sister is a specialist nurse she said to me, “Jane, for goodness sake, they can’t just leave you hanging for four months waiting for this next appointment. You need to contact the neuro-nurses and, and, you know, just get some support from the neurology nurses.”

And so, at that point, I myself, you know, as an articulate intelligent individual felt it, I just phoned them and I, and I said, you know, “We’re waiting for a diagnosis. We know he’s got a neuro-muscular degenerative disease, but we need some support.” And so I facilitated that myself and I was, and one of the things for the, through our journey, through his disease was, was the fact that I did know my way round the services. I did feel able to ask and how, I just question how many people would feel able to say, “I need some support or I need you to come and just give me a little bit of an idea of what’s going on here and, you know, how we can manage this and if there’s anything that we need to be doing or we need to be thinking about.”

So I actually, involved the neuro-nurse myself and we asked her to be at the appointment and I don’t whether or not the consultant asked her to be at the appointment when we actually got the diagnosis or whether it was because we’d asked her to be there. But she came into the diagnosis with us and, actually, for us that was really good because we were then taken out of the appointment with the consultant into a different room with the neuro-nurse and, and we were allowed sort of time to ask her questions as well about, you know, how things would be.
 

He was admitted and had to be taken in a in by ambulance up to up to the hospice, which is only a mile away. And that was a that was a, that was a relief because it just felt so out of control and I did need somebody, at that point, to step in and say, “Okay. I’m taking over now. You know, you’re his wife, just you be his wife.” And I think the three weeks that we had with him in the hospice gave that back to us, in some way. It kind of gave, you know, even though it was, you know, there were lots of people around us and everything, it actually did give me back time, permission to be his wife and not his carer. 

And what about, after George had died, was it collected in a timely manner as well?

That’s a really interesting question. It was, it was one of the things, I had a, a contretemps with the city council because George had had an alarm system, which we’d never used. I’d paid, we had to pay for it, I, but we’d never used it, ever, or test, we’d done the testing because it had a little thing that went round his wrist that he could press a button and they would call through and say, “Is everything okay?” Anyway, he so because I gave up work fairly quickly after we got that in, he we didn’t ever, we didn’t ever use it because he was never on his own. Anyway, everything was collected because it was a few days after George died, I have no idea, George died inconveniently on the Sunday of, of the August bank holiday weekend, so there was a bit of delay in kind of getting things rolling because we had to wait for the Tuesday.

The, so social services came. As far as I know it was social services, I’m sure it was social services, came, picked up everything including this bit of kit that was from the city council, and they charged me because they, because they hadn’t got it back. And I’m sure there is some mechanism that could have been used for the, for social services to say, “Actually, we’ve got this piece of equipment that belongs to you.” And, and nobody could find it. They couldn’t find it in the equipment stores, social services’ equipment stores, city council had no record that it had been returned so I ended up having to pay for this piece of equipment. And, and as if I would have sold it on e-bay, because what use would it have been to anybody, because it couldn’t have been attached to anything, a call system for somebody who’s disabled. And as if you’d have the energy when you’ve just lost your husband and you’ve got three children and all that goes on with it. So that was, that was a, that wasn’t good.

The other thing that wasn’t good was the, that we had a the wheelchair and everything, George had a, a whizzy electric wheelchair, which was all picked up after he died, very promptly, and then he’d had, he’d been due to have an appointment at the wheelchair services clinic that September. So he died at the end, towards the end of August, they’d picked up the kit, and I got a really snotty letter, or he got a really snotty letter saying, “You didn’t attend your appointment. This is, you know, this is really valuable time.” But, you know, and, and I rang them up and I said, “Would you have liked me to bring him in his urn?” Because I was so angry with them and I said, “You have a record that he died because you’ve picked up his equipment. You’ve picked up his manual wheelchair and his electric wheelchair. So you’ve got, you’ve got a record that he’s died so why did you send out a letter that said, you know, ‘Why haven’t you come to your appointment?”’ It’s pretty difficult to come when you’re dead.

I think I’ve got, kind of got a reputation with me as being fairly blunt.

But yeah, so yeah, it was, kind of everything did get picked up very quickly but actually, I really wasn’t in a state of any kind of awareness of who was picking up what and there needs to be an understanding from statutory services that, actually, you know, somebody could pick it up and sort it out because it’s, when you’re organising a funeral, you’ve got everything going on that goes on after a death, which is enormous and, you know and organising probate and you know, just it’s, you know, and you can’t plan for that. You can’t, you know, even when you know somebody’s dying and you think you can anticipate how it’s going to be, you’ve got no idea. You’ve got absolutely no idea how it feels once they’ve died and you know, and just kind of juggling everybody’s needs. And oh, it was, and I really was pretty angry with the city council for the way they behaved because I just thought it was just shabby, you know, when actually, it wouldn’t have taken, it wouldn’t have taken much for them to sort out with social services, actually, where the piece of equipment had gone. So, so yeah, apart from that it was, it was okay.
 

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 of basis myself, I really, really needed honesty from the professionals and even no matter how difficult the message, I needed people to tell me the truth.

And I think that my trust of, of individual professionals was kind of that was one of the real testers for me, was if I asked a difficult question of a professional and whether they were able to be direct with me and answer me directly, was, was a really telling factor. And you know, and I still can tell you the professionals who were really honest and who and who I really valued as, as professionals that we had involved in his care.
 

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.
 

But yes, so I stopped work, and George, at the point at which I stopped work, George was finding it increasingly difficult. He’d had a horrible fall down the stairs. We’d, so we’d had to bring the bedroom downstairs, which was another, another really difficult thing because, at that point, we got a hospital bed and nobody says to you, “You’ve shared a bed for nineteen years, you know, do.” Or longer than that. We’d been married for nineteen years, you know, “You’re going to have to go into a single bed.” And all the implications that go with that of actually, not about sex, but about closeness, about, you know, being able to snuggle in next to somebody that you’ve always snuggled in next to at night time. It was so, so we did get a hospital bed because we knew that we had to have the hospital bed because, actually, it was much more, you know, it was it was much better for George. He could, you know, he it could, he could sit up in it. He could, you know, adjust his position much more easily in a hospital bed than he would have been able to in a normal bed.

And he, and so we went out and bought a nice single bed for me thinking that we’d got quite a long time that I would be having to sleep in a single bed next to him. And little things, like we made sure that the beds were the same height when we went to sleep you know, no matter whether we’d had to adjust them for, you know, getting George into bed and getting out of bed and stuff. Actually, making sure they were both the same height at night time, you know, when we when we settled down to sleep.

And you know, that so I suppose that’s one of the things as a carer, is that huge change in our relationship of, of really going from being his wife to being his carer was, was enormous. And I wouldn’t have, you know, and I would have had it any other way because actually, I really, really wanted to care for him and I really felt that, you know, it was my responsibility to do that. I was a nurse. We were married in sickness and in health and, and actually, it just really, really mattered to me to be able to do that, to be able to do all his care and I found it very difficult to ask for help.
 

But, but the fact that I finished work was great. We were really, we were in a very privileged position. We had, we’d had insurance. We’d had critical illness cover, thank goodness insurance, so, so our mortgage was paid off. George didn’t retire from the police. He, he stayed, they insisted that he stayed employed and so he was on full pay and they managed to extend his full pay, and they did extend his full pay until he died. Not that we’d anticipated that he would die as quickly as he did, but he was on full pay when he died and was just off sick. So I was very conscious that we were in an incredibly privileged position and, actually, if that hadn’t have been the case I wouldn’t have been able to stop work.

As it was, we got our disability living allowance. We got the, it came back, initially, as the lowest rate, which I knew it shouldn’t have been, so we had to appeal and then by the time we appealed and we got the middle rate back and the reason we needed the middle rate was to have the, the mobility component in order to be able to get a car that George could access in a wheelchair.

We it came back as the middle rate, and I knew at the point at which it came back at the middle rate, that actually, he was no longer, his circumstances had changed and, actually, he was eligible for higher rate. So I then had to, not appeal, but I then had to do a change of circumstance form and, and get the high rate and we got the decision about the high rate DLA on the Saturday and he died on the Monday. Also, no, no, the Friday and he died on the Sunday.

So you know, so that actually wouldn’t have been very much help to me in the, had I been dependent on his benefits. You know, it was very interesting and having and having helped people to fill in forms for quite a long time because I was a health visitor and then lead nurse for respite care for children with complex health needs, it was, you know, I was used to filling in DLA forms. I knew how to fill in a DLA form. I knew I knew the type of terminology you needed to use. I knew, you know, how to describe circumstances and unpredictability and that kind of thing.

But it was very interesting having the boot on the other foot and the blue badge as well. We didn’t, we were turned down for a blue badge because I was I had a letter telling me that that it had to be a significant and permanent disability. And I did write back to the council and say, “I would like very much for this not to be a significant or a permanent disability and if you can tell me that motor neurone disease isn’t a significant or a permanent disability, then I’d be really glad to hear it but we’re not trying to con the system.” And I did get slightly obsessive about people parking in parking in disabled spaces, who didn’t have a disability, and kind of wanting to take a lump hammer to their to their windscreens really in a very kind of rational way.
 

At, you know, when you first started this caring journey, what tips could you give somebody starting on that journey now?

It’s so difficult because it’s so individual. It’s such an individual thing. I think be kind to yourself and, and I think, as well, just have the knowledge that there is no right or wrong way to do it and you do the best you can within the capacity that you’ve got. And, and I think there’s a real need not to be too hard on yourself because all of us get things wrong and we get some of it right, get some of right and it’s fantastic, some of it is wrong and I think also, don’t be afraid to challenge. Don’t be afraid to challenge the professionals because professionals don’t have all the answers. 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.

And at, that’s actually, that’s what I would say is communication. Communication is absolutely the key, you know, communication between yourselves as a family, as a, you know, as a couple, just every single bit of communication is so important and good communication, actually, makes the journey afterwards much easier.
 

How was it for you? Because of your children, you still had the role of mother?

I think it was a saving grace. I think that, actually, having a reason to get up in the morning and not to pull the duvet over my head and just tell the world to ‘bugger off,’ was, I really do think that, actually, that’s what kept me going. I had to, and I had to kind of have some sense of normality. I was obsessed with needing to be normal and I was so abnormal, looking back on it.

And, you know insisting, poor [daughter’s name], my middle one was had just done her GCSEs, hadn’t done as well, obviously, because her dad was dying, hadn’t done particularly well in her GCSEs. The high school that she was at didn’t have a sixth form so she had to change high schools to go to sixth form and I insisted that she go, you know, a week after he died and I was insisting that she go to school. And poor [other daughter’s name], the youngest, had went back to school the day after his funeral, just went back to school and her, you know, and her dad had died a week before. And I think, you know, and I think, in lots of ways, actually, that was right because it did mean, you know, because you do have just pick yourself up and carry on no matter how abnormal that feels at the time.