This week of respite care was offered, and I mean I was very, very, very tired, and tired from living with the emotional sadness – not the stress of the work or anything, just this relentless awfulness of seeing Mum diminish. And my partner and I planned to go away and we decided we’d just go down to Cornwall – we didn’t want to go overseas in case we needed to come back. And my sister agreed to come up here so that she would be on hand. About two weeks I think before that week I rang the hospice and said, ‘Would they like a handover meeting?’ And they said, ‘No, they’d be fine. And I wasn’t very happy about that.

I had no information about whether I was supposed to send Mum up with feed and a weeks feed, syringes, pink sticks, saliva, fizzy water, tissues – there was nothing. You know, if you go off to do something for a week, or you send your child off to do something for a week, they usually give you a list of what to take. There was absolutely nothing. So we went up there. It was a Monday morning, it’s the consultant’s round. It’s all of a buzz up there. It’s the most unsuitable time to be dropping off somebody for respite care.

I said I was there, I said that I wanted to hand over Mum. I’d like to talk to somebody before I left. I had to leave at 11 oclock. And so we sat, and time went by, and nothing happened. And at ten to eleven I went and grabbed a nurse, and said, ‘Look, I’m leaving, I need to give you some information. Please make sure the right person comes and talks to me. So somebody came who was obviously just trying to leave whatever it was she was just dealing with, and she knelt down on the floor. She had a scrap of A4 paper, folded in four with notes on the back of it, and she said, ‘Tell me what I need to know. I mean, how bad can it get?

I left Mum and I felt utterly distraught, and I didn’t feel that they’d taken on board anything I had to say. In fact I got a speeding fine on the way down from the hospice’ We came home a day early and I went up to the hospice that night, because I could tell that things weren’t right. And I spoke to somebody and I said, ‘I’m taking my mother home tomorrow, and I want to meet with somebody, whoever needs to discharge her, and I want to talk through what’s gone on this week.

So I mean that was a really bad experience and Mum went massively downhill from that, and she never recovered from that week at the hospice, and it was a dramatic turn, and it wasn’t a turn that should’ve happened. There were two dramatic things that happened in the year. One, she had a fall, a bad fall, because the neighbours had left the hedge cuttings out on the pavement and she fell and cut her eye and had to have stitches. I have to say A&E were very good at getting her in and out quickly because they could see she couldn’t stay around there. And the other thing was the hospice. So I have to say I felt tremendously guilty. I wish we’d never taken that holiday.

Yeah I think that it’s a really difficult position to find yourself in for many reasons. But I think the hardest for me certainly was that while your parent is still well enough to manage their own healthcare you must let them manage it. That human nature seems to make one in a way – I think entirely naturally – obsess about illness, or not obsess about it, but it becomes the main focus at the point of diagnosis.

I look back on that now and I think I wish wed just shut the door on it for as long as we possibly could. And not felt perhaps, I think if other people had been more organised for us, we couldve known that actually when we needed it the things we needed were going to be there, rather than feeling we had to grapple with it all along the way.

I think I would certainly take more risks than I took. With going out, with going to do things, I would take today as being Well and not being Ill, as it were. You know, tomorrow is always going to actually, with motor neurone disease, get worse. So push to the limits of what is possible today, without fear, because it’s too easy to get bound up in the fear of the impossible and the difficult. And be brave. It’s the only thing you can be.

Is there anything that particularly helped you through it all?

Well, I think my partner certainly. I could never, ever have done it without him. The strength of my relationship with Mum, and my own absolutely certain knowledge that I was always going to look after her. I knew that from when my father died when I was a teenager, I always knew she would come and live with us. And one or two people I think gave me strength And playing bridge [laughs], which I just started learning to do when Mum was diagnosed, and I have to say that was a saving grace.

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.

I think that there’s a real lack of understanding or joined up thinking in what somebody needs in terms of communication. Some of these systems are really quite difficult to grasp. They work on a kind of a menu based logic, which if youve used computers and you’re well versed in how a computer system files its information and operates, then you could probably pick it up really quite quickly. For a woman of 73 to pick that up, who thinks about language, and thinks about it in a very different way, it’s never going to be a good thing. And they spent a lot of time foisting these things on Mum, saying, you know, Have a go with this. And the one system that I thought seemed possible, they werent going to be able to fund and it wasnt going to actually come out until July. So what the point in spending three hours here going through that was, I have absolutely no idea.

I talked a bit to them about funding, because funding is something I know quite a lot about. And they were very, very unaware of the sources of funding that were available to them. And in fact over the course of the year I passed on quite a lot of funding information to various people and I hope that might be of use.

The other thing they did was they kept downloading software onto Mum’s computer. Well, the size of these programmes is absolutely massive and when youve got relatively un-technically minded people downloading software onto your machine, perhaps they don’t know that the effect of it is actually to completely mess up your machine. Mum’s computer was quite a lifeline to her and being able to go onto the internet and look at art. Again they, basically Mum’s computer just gave up, and we ended up getting a new one and I ended up having people out to come and look at it because these programmes were just interfering with all the things that were on there. I just find that so utterly nave.

When she went to the hospice I drew up a kind of – I don’t know what youd call it – but just a kind of sheet of regular things that she might need, a sort of flip chart of things she might need and things she could point to for people that really couldnt attempt to understand her. And I remember showing this to the speech therapist, I was really quite proud of it, it had taken me quite a long time to do, and it was all colour co-ordinated, and she said something really dismissive to me like, Oh well, there are better things than this, or something I thought well, it wouldve been helpful if youd offered them. And Mum asked about Makaton charts which were sort of picture charts, which again, if you’re a visual and not a verbal person, is actually a really good way to communicate and to communicate quickly. And they were never forthcoming.

FootnoteMakaton is a system of signing and symbol use for people with communication difficulties. Seewww.makaton.org

They were thinking that morphine was a good idea, that we needed to think about a syringe driver.

On that Tuesday, we had the GP up and the district nurse up to talk to us about the syringe driver, and Mum asked us to make the decision, and I could see that she was pretty ill. They gave her a dose of morphine on the Tuesday night, and it was calming, it was all right. I think it was Wednesday that [my partner] and Mum and I sat and watched the Gold Cup and looked at hats and had quite a jolly day. We agreed to the syringe driver, which I think was put up on Wednesday, and Mum had always had this hyper-sensitivity to drugs.

They’d been giving her doses of 1.25mg of morphine which is a child’s dose almost, it’s half the beginning adult dose, and it was enough. When they put up the syringe driver they gave her a 5mg dose. It absolutely blasted her to kingdom come, I mean it was appalling. And she became – it’s really hard to describe it unless you’ve seen it, but she was fazed, really fazed by it, and it was like movement was dreamlike, and yet she was very definitely mentally there. And she was moving her legs trying to knock off some of this sedation, and [my sister] and I stayed up with her all night. We were sleeping in the same room, both of us either end of the sofa, and in a way it was a beautiful night, but so scary, so dreamlike, so very strange. At one point she started this very, very slow breathing and I wondered if she would die, and I hoped she would die. But it was strong, and she didn’t die, the next day came. And the morphine wore off, and she had a day of being very alert and very on the ball, very pleasant, and she was – well, the registered nurse thought she was agitated. I didn’t, I thought she was just awake. And I thought there was no harm in her being awake because actually that might just give her a better night and the concern was that her agitation might increase. And I have to say it wasn’t something I was particularly bothered by. She wasn’t in pain, she wasn’t having difficulty breathing.

Earlier that evening [my partner] and I had gone out to have a drink, and we were out for about an hour. When I got back the registered nurse had given Mum one of these tiny, tiny doses and it had knocked her off some more but she was okay. I got back and I said to the Marie Curie nurse that I wasn’t happy with Mum having top up doses of the morphine over and above what was going through the syringe driver, and that I didn’t want her having stat [immediate] doses throughout the night and she said to me, after this dose the registered nurse had given her, she said, ‘You know, your mother’s fine,’ she said, ‘She’s very calm, she’s not anxious. And I said, ‘She’s not fine,’ and in fact she’d gone into this weird state again. I said, ‘She’s not, I think she is anxious, I think she is distressed. I think it’s too much morphine. She does have this sensitivity to drugs.

I think this was one of the biggest problems I had, and in fact it goes right back to that very first meeting of the diagnosis, was actually knowing what each person who would be involved in Mum’s healthcare did, what their remit was, how they related to each other, whether I could ring them, whether I had to actually go through somebody else to get hold of them. And I think it would’ve been terribly straightforward to have given me a little diagram that said, ‘You’re going to have an X, X and an X involved in your mother’s healthcare. This is the department they work for, and this is how they relate to each other. They could’ve said – actually they don’t, at all. And, ‘If you have any questions you can ring them yourself. It took me a while and in the end I think people probably got very fed up with me because I did ring whenever I wanted something, and I struggled through all of that, and it really was a struggle.

In fact while she was still living down the road here in her own house, she had an assessment done of what might help. There were very steep stairs there, and an upstairs loo. There was no downstairs loo but it took weeks for that to come through, so long that we’d actually decided by that point that she wasn’t going to go on living there, and that a new assessment needed to be done here. And so at that point I think there was a decision made to put a handle at the top of the stairs here, just because you can actually fall down the stairs if you were to trip and it seemed sense to have something to grab onto just going round the corner. And a bath chair arrived, one of these rising jobs. It actually was far too soon for that, and once you have one of those in your bath they’re incredibly heavy. You can’t actually get in a bath and relax, which is really what baths for women often are, and the thing was just a pain. And Mum was very fit and in fact she had good muscle control in her legs and she didn’t have a problem getting into the bath or swinging her legs round or anything like that, so it was really an inappropriate device to come with. And I didn’t ask the question which is of course, ‘Are these things at a premium? So should we be very grateful that we’ve got this now?’ which would’ve been a sensible question to ask. But at that point I was very na’ve in my approach to everything and you just sort of thought other people knew best, and was prepared to take anything they threw at us, and Mum was the same. So we dutifully left this thing in the bath. It’s also huge so it’s quite difficult to put it anywhere else. And so that was that, really. At the time, she was just walking with her own stick, just one, and we had nothing else.

One of the things that seemed to be quite difficult was actually getting in and out of the car, and I asked about swivel seats and things like that for the car, and was told that that wasn’t something that they had any information on, really, and that because it didn’t come in their budget it wasn’t a concern. If I wanted to do something about it there was a conference taking place on travel, and they suggested that I went and spent the day there and it would be very helpful if I could write it up and report back to them. So I didn’t go [laughs]. So that was that.

I had been asking for quite some time about things that would help make writing better, or easier, because Mum was getting muscle wasting between her thumb and her first finger and it was getting tricky to hold knives and forks, pens, those kind of things, toothbrushes. And I must’ve asked about five or six times the occupational therapist what companies were reliable or were there magazines or mail order catalogues that one could look through. I think those probably turned up about nine months into Mum’s diagnosis. You know, they were very straightforward and simple things to get hold of. And I just thought how ridiculous, and I was just adapting everything I could adapt in a way that I thought might work, but some things are so much easier if they’re actually made for the purpose. So that was a source of immense frustration, really, for me.

So I asked for a wheelchair. I was told that wheelchairs were phenomenally difficult to get hold of. This is actually to get one in the home rather than just for us to hire one. There was a long waiting list. I asked whether motor neurone disease had any kind of priority and they said, ‘Well, it depends county to county. And I thought, ‘Well, you must know, you’re actually working within this county. The wheelchair just didn’t turn up, and we went to Mum’s GP and I said, ‘You know, it’s a source of frustration for me, I’ve been waiting for this wheelchair for a long time and although Mum is quite happy to walk down the street to the gallery, it’ll limit the amount of time we can look at pictures because she’s lost the energy on the way. Her GP made a phone call that minute and by the time I got back here the wheelchair was here. So that said something to me.

Why do you think it had been so difficult?

I think it was just bad – or lack of – administration on behalf of the occupational therapist. I think she just didn’t follow it up, if she even put in the request in a timely fashion. I don’t know the answer to that but it seems extraordinary that your GP can ring and it can arrive that very afternoon.

The paid care is a minefield, it’s absolutely horrendous to venture into that world, and I think one ought to get help with that, and help is just not there. I was given a list of phone numbers by the district nurses, and that was it. In fact my partner rang all the places, there were only two I think, or maybe three, that actually covered this area. They tend to work in very close proximity to their base because traffic in the city is so bad that they can’t get easily from A to B and therefore they try and concentrate in one area, and there was nothing between them. I mean in the end you just stuck a pin in and said, ‘Oh well, that’ll be the one. But for me the key issue was I did not want to have six different people. I wanted an agency that promised me two regular people and three as a cover, and one other as a cover. And I went with the one that said they could do that, so we had a trial run. We had an agency in and we had two weeks until Mum had a week of respite care in a hospice, and I thought well we’ll try those two weeks, and see how it goes.

So the first girl that turns up is 18 years old, wearing heavy scent, culturally very different, but English. And communication was another one of the things that I had underlined. I think that if somebody has some severe speech problems and difficulty in making themselves understood, and being understood is key, then actually you need somebody who will hook into the sound, or some of the sounds, and be able to associate that with words, and make a pretty good guess at what it is that person is asking for. And no matter how good somebody’s English is, if English isn’t their first language they’re really going to struggle. So this young girl was in fact team leader for the group of people that we had, which seemed somewhat surprising. But she proved to be very good. And then we had a bit of a rough ride. The woman they really wanted to put in here didn’t do the kind of hours that we needed, and we had one girl who didn’t fasten a hot water bottle properly and it leaked all over the bed, and thank goodness it didn’t burn Mum. They all wore such heavy scent, which is extraordinary to me. People who are caring for people who are sick or elderly, you know, not only might those people have breathing difficulties and therefore scent is not the thing to wear, but also you don’t really want the smell of your care worker in your house for another three hours after they’ve left. They’re not supposed to become an integral part of your daily living. And this girl, I spoke to her team leader and I just said would she be able to say to her when she comes to feed this back to her, and this girl turned up the following morning, waited until I was off the phone when she’d finished her job, and absolutely let rip at me and said, ‘How dare I mention anything to her manager, you know, what was I thinking of, you know she couldn’t possibly have not tightened the lid on the hot water bottle. And I just felt severely under attack and I was appalled that anybody that we were employing could actually be so rude.

We had another girl who just used to take phone calls while she was putting Mum to bed. At one time she just left Mum uncovered on the bed while she sat and chatted to her friend. She used to just sit in the kitchen afterwards, no notion of time. She’d read the newspaper or what have you – she obviously quite liked being here. You couldn’t trust them actually, either, to do the things that they were meant to do. Despite them having a list of everything, they would never review the list, which meant if things had changed it was just a question of memory. They didn’t tend to communicate with each other, and at one point no-one turned up. Their on-call service out of hours is run in a completely different city, and you can guarantee the message doesn’t get through. So it was very stressful having them involved.

And I also felt Mum needed to be treated as a 73 year old woman, not as somebody in their twenties. You don’t wear tops with your breasts coming out over the top, especially when you’re bending down over elderly patients, things like that – they’re just inappropriate, unsuitable. But we did stick with that particular agency after she came back from the hospice, again because I just thought it was better the devil you know, and we managed to get two people consistently, one of whom had a son who had a PEG, and she was a woman in her late forties, very mature, very on the ball, and very nice. And so we were lucky.

And I put that entirely down to actually just speaking to this agency consistently and saying, This is what we want. Either you provide it, or we don’t use you. And I think that’s the only way. Most of them of course are not used to working in homes where there are other people present, that’s quite an unusual set up for them, so they really struggle to know how to manage with a family. And I feel desperately sorry for people who have these people coming in who are on their own, because their ability to report back on the misdemeanours is not going to be as good as mine is, and they happen all the time. The level, the standard is quite shocking, really. So they’re a mixed blessing. Tricky.

Next day I was invited in for some training on how to operate the PEG. Id been given no information, actually, about what we were going to have to do to manage it, once it was there. Anyway I went in that morning, and I was given I think ten minutes to be shown how it worked. And a nurse who spoke very little English came to show me, and she put a syringe of, of, of water through the PEG with such speed, and I think for a daughter to suddenly see a mother being fed through a tube in the stomach with such aggressiveness, I mean that bit in itself is difficult. But the kind of just callousness of it all, just shocked me beyond belief. And I remember walking out of that hospital and phoning my sister in floods of tears saying to her, We have to manage this every day. Mum’s not going to be able to do this for herself, you know, no-one has told me that were going to have to flush this thing through every single day now. And I was just, blown away by that, reallyThe other

You didnt get any other training after that,

No.

That was it?

No, that was it. Yeah.

You didnt get any written information on it?

No, I had got hold of a booklet which has information, really, that’s good for people who know how to use it, but actually not helpful for somebody whos just picking up on it. It doesnt have any pictures, and actually pictures of course are the easiest thing to follow if one’s uncertain. I felt that really they needed somebody like me to write it for them, because theyre never going to know what it’s like to learn to do it, or what you have to overcome psychologically in order to get round to using it. And I think that’s quite difficult. And I think also that there are questions that you have like, Well, where do you get the equipment? and you know, How often do you throw away a syringe?, and you know, Is it safe just to keep it open in the bathroom? or you know, Could I poison my mother?, or – you know, these questions which may seem really silly or elementary are the things that one really worries about. It’s like having a new piece of machinery which actually is going to be crucial to your very existence and you don’t know how to turn it on [laughs]. It gives you a huge amount of fear. And I worried enormously about that.

You said that psychologically you had to ,

Mm.

Can you tell me a bit about that?

Yeah, I think the role of your mother in your life is to kind of nurture you and feed you, and that kind of intimacy is one that’s mother to daughter, and suddenly there’s a switch which is untimely. It’s not as if your mother had lost her faculty or anything like that where your mother’s life depends upon your care. And that not just that you’re not actually putting food in her mouth, it’s through a hole in her stomach and for me the kind of connection between the umbilical cord and the PEG tube, you know, it’s there, and that seemed like a very difficult line to cross. I think my mother also had an immense amount of dignity and suddenly I was playing a physical role. And I think again that’s quite a tricky line to cross, no matter how close your relationship is. You know, I think there are some things that one wishes, one hopes to keep separate, and that wasnt going to be possible. And I think also for her, again there was this business of, I’m not going to be able to manage this myself for long. So it was having to contemplate again the business of failing.

Basically Mum was given a very direct diagnosis, and told that they thought that she had MND, which was her worst fear. It was what she was expecting to hear. It wasn’t what I was expecting at all. And I was absolutely devastated. I think Mum was just completely fazed. I think she just took it on board. She asked very sensible questions. I felt she really wasn’t being listened to, I felt that the consultant was very used to delivering these verdicts, and that’s what it felt like, it felt like a death sentence.

So we got home and I phoned my sister’s husband and told him, and they came up that afternoon. And they spent the week with us, and it was a week – it was a bit like being on a desert island, really. It was a week of just disbelief and tears and anger and just an extraordinary time, really, where none of us wanted to go out, or do anything, you know. It’s really hard to see the day is dawning and to see life, actually, when suddenly you’ve been told that death is the prospect in front of you.

But we decided that what we would do was try and travel a bit. In fact Mum had a holiday booked with her oldest friend shortly after her diagnosis and she wasn’t going to go, and so my partner and I cancelled our holiday and went with Mum and her friend. And that was a really difficult holiday because her friend was actually quite spiteful to her, because of her own hurt. She’d just lost her husband to cancer the year before and she just couldn’t take the place where Mum was, and she was just cruel. And I thought what an irony, really, that this friend who Mum had known since her teenage years should suddenly cease to be her friend at the point where Mum really needed her, and I did wonder after that holiday whether they would ever be able to be in touch with each other again.