The local Hospice has been marvellously supportive; within a matter of weeks after diagnosis I had a call from the specialist nurse for palliative care at the hospice. She described herself as a ‘cage rattler. She came to visit, and has done so every three weeks to give medical and moral support. I very quickly learned about the ethos behind the hospice and why I had been put under their care. It is NOT a place to die, as I had thought. It is a place where there is immense kindness and support for anyone with a life-threatening condition. They offer emotional support to the patient, their carer and families, and respite care and, ultimately, palliative nursing care. It was a revelation to me that they work in conjunction with the whole patient team – the specialists, the GP and community nurses. The nurse suggested I have a weekly visit at home from the hospice’s aromatherapist to help my weak face muscles. Then she arranged for a representative from their Welfare Department to talk to us about finance and a Living Will (ADRT), which is something I was keen to set up. The Living Will (ADRT),is put into the Emergency Services database, so that if they are called out they will be informed of my wishes regarding resuscitation. These are all areas of the patient support network at the hospice. The welfare assistant was able to ‘spearhead’ the benefit system through the maze of forms and jargon, which would have defeated us. Because the applications are made on our behalf by the hospice, the Pensions Department hurry the decisions through. All the benefits have kicked in and were backdated some months.

But I really found the best help within my local hospice which my MNDA visitor advised me of and I started attending around February 2001. I was not interested at first but I was so low that my brother arranged an appointment with a doctor there. I can safely say at that point I was disillusioned and disappointed with the doctors I had met. My GP seemed more shocked by my diagnosis than I was. I let my obstetrician persuade me to be induced and have an epidural (because of my diagnosis) and found the birth more painful and distressing than the birth of my first child where I only needed Entonox. So I didn’t hold out much hope when I heard that I was going to see a hospice doctor.

After diagnosis I was sent to various hospitals for speech therapy, physiotherapy, breathing tests and x-rays and it was exhausting. I decided I couldn’t trust anyone within the medical system. Thankfully that changed when I went to the hospice. I was no longer pushed from pillar to post and I receive everything I need there. Coldness has been replaced by warmth and kindness. I have had many treatments there, including aromatherapy, healing, hydrotherapy and I use their gym twice a week. I’m sure that I would be weaker if I wasn’t exercising regularly; I still walk with assistance and feel very well generally.

I have stayed there twice for respite care, both times because I was very depressed and couldn’t cope at home. I found those stays reassuring and comfortable, perhaps because many of the staff know me. I would rather stay in the hospice than a hospital and have made a Living Will (ADRT),stating that and also that I don’t want intervention such as feeding tubes or ventilation. I know that my opinion might change as I become sicker but I’ve felt this way since diagnosis and don’t anticipate that changing. I definitely don’t want euthanasia because I don’t think I have the right to decide when to die. I’m quite angered by the way the media always associate MND with euthanasia because there are so many people living a fairly happy existence regardless of MND.

And also our GP has put us in contact with our local hospice, who, and I now get respite. Ive 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 theyve 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 doesnt like it, and he doesnt 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 cant fault it in any single way. The girls are great with him. All the nurses, the doctors there are super. And theyll 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, hell never say he enjoys it, but he doesnt hate it. Let’s put it that way [laugh]. And he doesnt ever say, I wont go in. I don’t want to go. He, he manages. And they think he’s great, because he doesnt complain. And he’s very good that way. Hell 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 wont 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 cant help it. Ill 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.

I know when Bill goes to the hospice, for example, because the emphasis is so much on the quality of life and you can go in there and say, ‘I hope he’s going have a nice peaceful time. ‘Oh, we’re not here to give him a peaceful time’, they’ll say in their cheery way and you’ll think ‘Well, that’s a joke but I hope that underneath they really understand how dreadfully fatiguing everything is to him. And you’re, not, not quite sure about that. I think actually – I’m not sure about this – but I think the MND Association gave some sort of crib sheets to the hospice and people so that they would have that understanding.

So how do you feel when Bill goes to the hospice?

Well he’s been twice to the unit for respite and he’s been once on a holiday with them. They actually take ten or twelve patients to Centre Parks so he’s had that. The first time when I came back I felt terrible, I felt, ‘This is the rest of my life, here’s this empty house’, and it felt awful. And I suppose that’s what I got, have to get used to really. I mean, as the disease progresses you get used to doing things on your own that you would do as a couple, go to a wedding, go to somebody’s party, all of those things. It’s not easy, but you sort of do it for both of you but, you know, you know that this is your future life. So there’s sort of that, and then you know that because he’s in a different setting physically the logistics of doing everything, the loos, the showers that are different from at home, and you hope that he’s not losing, dropping down a level by things being different or easier. I mean, for example we have stairs at home until we had stairlifts and it was important that he got some, he kept up his stair [laughs] going up and down a little bit when he was in the hospice and stuff. And so there’s just that element to it as well.

But I think I must’ve strained myself, my stomach and, well, my hernia, I went along to the doctor and this was probably about September just after I sort of recovered from the leg injury and they decided that I needed a hernia repair.

So this was in January 2006, and I went in and that time I wasn’t allowed to lift for six weeks. So this became a bit of a problem so we, the practice nurse of the surgery they got in touch with a caring organisation, [county organisation], and they tried to place Luise for respite for a couple of weeks, and then they were going to get a care package in. But in the end the specialist nurse pulled a few strings and got her into a wonderful Sue Ryder Hospice in [town]. And she spent two weeks there, but unfortunately because we were exercising Luise, trying to keep her still walking, we lost that facility because of the amount of staff in there, they couldn’t give her the sort of one-one attention we were giving her at home. So she lost the use of walking then.

And then as I say, they couldn’t arrange with the social services and the local council, they couldn’t arrange a care package because everyone was on holiday, this was over a bank holiday time, I think. And so when also – so they couldn’t get a care package in time for us, which was supposed to start two weeks into my six week period. So they had to take her to a nursing home, an old people’s nursing home, which we were appalled with really. I suppose as a nursing home goes it was quite a nice place but, you know, the facilities that Luise was having at home and in this nursing home were very dismal, really, because you really have to queue up to go to the toilet. And so she was there for two weeks.

Daughter’In November, [son] came, didn’t he, but you were finding it quite difficult. If he hadn’t come you wouldn’t have been able to stay at home.

Maryse’Before that we investigated nursing homes in Bristol. [daughter] found this one in October and we came to visit it. And I thought it was the nicest one of them all. But I didn’t want to leave Bristol because of all my friends. From March, my son, he came again from Australia and he helped me during the night to get up. I was losing more and more balance. And the carer said we should have two carers. Even I had a fantastic bath. If I went in that it became too hard for one carer and that was when I realised that it was time to do something. And [daughter] said, ‘Let’s ring up this place. And the response was that there might be a bed in the next week. I came here on the 10th January.

Maryse’You were saying, asking me about adapting. It’s amazing, I came here voluntarily and it’s my home. Something, I don’t know what it is, but it’s playing a positive influence, yes.

There was a programme on television the other day. I watched a little bit of it, I think it was Holby City, where they were saying there was a woman who wanted to go to Switzerland and commit suicide. And I looked at it and I thought, ‘Well, I don’t feel like that at the moment. I don’t recognise that feeling of desperation at all. And I was wondering if perhaps I ought to be making plans for something like that. But whatever it is, at my stage of the disease or whatever, my brain is not in that sort of negative time frame, and at the moment I’m enjoying life. And it would seem an awful betrayal of all the people who are trying to work for me and do things for me to go and decide I want to commit suicide.

So I’m not in that way at the moment. In the future I wouldn’t mind having a Living Will (ADRT), and I think I will write one, just simply to say that if I need to be resuscitated I don’t want to be, and that if I’m in a position where nothing can help me then they might as well give me a big dose of morphine rather than a small one and let things go easily. Because I don’t see any point in sitting round for months in pain and agony. And I would hope that when I come to be in a terminal state, that they will make it as easy as possible for me. But I think it’s very sad that people like Diane Pretty had to go to the Court of Human Rights and ask for help in that way. I thought that was disgraceful, really, that she couldn’t be reassured that she would die a painless death. I thought that was very upsetting. But I don’t really look ahead to that. I try to enjoy the way I’m feeling at the moment and stick to the positive kind of thing.

Do you ever think about Living Wills and advanced directives and all of that, or?

I’ve done that.

Oh, you have?

Oh, yes. I’m very, very free and relaxed on that. Because I, I’ve done the Living Will (ADRT),and there’s a copy with my GP, there’s a copy here with us. And I’ve done it in the sense that I’ve said I don’t want any problems if we reach the final point. And the reason I’ve given to my GP and other people it’s very simple. Suppose we talk about the breathing problem. If I was living in Africa in the condition where I have no access to devices like Nippy [non-invasive ventilator] or other things like that, I will die naturally, because my, my breath, my lung would not be able to, to cope at the point, so I would die. So why would we continue here to give me a Nippy or to put me under therapeutic harassment, and things like that, if the body is finished? So in this case just let me go. And it’s natural. So that’s the, the way I feel about it. So I’m very, very relaxed on that. I said, ‘Before we reach this point, I want to let you know that there’s a lot of energy in the body. It’s not easy to die. So I will still continue to, to fight until I can’t. The main point is that I’ve made a Living Will because I don’t want to be a burden to anybody. So if I’m just a, a piece of, a body in the bed cannot even any, unable to do anything, it’s better to let me go slowly because it means that we’re reaching the point.

I’ve done quite a lot, mainly because I’m a single parent with two dependent children. And it was when a friend of mine with MND died unexpectedly that it really hit home to me that if anything happened to me suddenly, that the children would probably – or friends – would have to make choices. So I decided to draw up a Living Will (ADRT),to make sure that – it’s really a back-up. I’m not saying I don’t want treatment, because I wouldn’t have had the PEG done if I was – all it really says is that if possible I don’t want to be ventilated. Because in the event of that happening it would then become a decision of my children if and when to turn that off. And that’s something I don’t want them to have to deal with. Even though I know deep down it might never happen, I’m just covering all the angles. And also if I lose everything and can only blink I may well be happy in that state. I don’t know yet. I might be quite happy sitting watching Cliff [Richard] all day, and then again I might not. But people who know me will sense whether or not that is quality of life. And if I’m going to get a chest infection repeatedly, then don’t treat it, if all it’s going to do is maybe prolong my life by another three weeks or a month. So that’s really why I’ve done it. I’ve just made sure that there isn’t – I’ve got something to fall back on. And I also know that my Living Will (ADRT),isn’t written in stone. It can be changed at any time. And I’ve got a really excellent relationship with my GP and my neurologist, who both would know, I think, would know me well enough to know that it, the time’s not yet. Because initially when I was doing it, it was, ‘God, if I ever -‘ – I remember saying to my GP, ‘You will give us the tablets now if I get a chest infection? Just because I’m going to – I’m not saying, ‘Kill me off. And it was that feeling, now I’ve put this in the writing, will treatment be withheld? But that’s not the case at all. It’s just there. And I remember when [consultant] was on about having the PEG done, saying to me, ‘I know you’ve made a Living Will (ADRT), but -. And I keep saying to him, ‘You’re misunderstanding why I’ve done the Living Will (ADRT). I’m not considering PEG-feeding. I’m not going to refuse artificial therapy, non-invasive ventilation, if that helps. It’s just there as a – what I don’t want is to be on a ventilator and kept alive. That isn’t fair.

What do you feel about the, the debate about whether people should be given the, the choice of euthanasia?

I feel that it’s not, I don’t think there’s any black or white, where – I think it’s, everybody has a human right to die with dignity, but the only concern with it is that it could be abused by people. Obviously you don’t want people bumping off their granny because they can’t care for them any more. That would be wrong. And I think if they’re not, so long as the individual, if I can still blink and I can say, ‘No, I won’t, I’m, I don’t want my life ending’ then. But I think if it, the time is right, then I think it’s silly to keep somebody in that state for the sake of another month’s life, or another two months’ life. Because at the end of the day if it was an animal you would go straight to the vet’s. But because it’s human it seems barbaric that we can allow humans to continue. Then at the same time I do get very annoyed, whenever euthanasia hits the press, it’s always in association with motor neurone disease. And that angers me because I know there are other illnesses out there – cancer, my step-parents both died of cancer and I know in my heart of hearts that they were helped on their way, gently and quickly, but you wouldn’t dream of making a fuss, so. And I know that people, I just get annoyed that, when it hits the headlines. I mean, I’m living with MND, not dying from it, that’s my philosophy, and why should that be the only illness that euthanasia covers? To me if someone has just been diagnosed, they must think that’s the only answer. And it isn’t. There’s a lot of life to live with motor neurone disease. And although I have made a Living Will, and I have made precautions, I do think that we get a bad press that euthanasia’s always associated. I mean, even when it’s covered on TV, they often go down that route, and it’s, I just think that it’s not fair. But if they did make it legal, that would probably get rid of that publicity and the bad –.

And then it would just all go away?

But I think to, I mean it’s got to be highly regulated and it’s got, you can’t just end somebody’s life.

The Living Will(ADRT), that was important to me, to write a Living Will (ADRT), so that if I am unable to express myself, then my desires are quite clear. And it should be a bit of a safeguard for my husband, so that he’s not having to battle independently. Yes, those kind of things I think are taking charge of it.

Setting up a Living Will (ADRT), how do you do that?

I spoke to the Macmillan nurse at the clinic, because when I brought it up to the consultant he said, ‘Oh, the Macmillan nurse will talk to you about that. Bless her, apparently it was the first time she had to talk to anybody about it, she confessed afterwards. But she was very good and she gave me the format that the MND Association recommend. So we looked through that carefully and it seemed to be fine as far as my wishes were concerned. So I then took it to my GP, discussed it with him and signed it in front of him and a witness. So he has a copy of it, the consultant has a copy of it and we have one here. And I’m becoming aware that with the introduction of the Mental Capacity Act, I think it’s next year, that it won’t actually be clear-cut enough and I’m going to have to go back and revise it. But that’s something I can do quite easily now I’ve gone through the process of what I want and what I don’t want. And basically I’m saying I don’t want any invasive intervention. I want the best quality of life I can have naturally, but I don’t want anything invasive.

Have you, while we’re talking about that, have you thought about, any other thoughts about the future in terms of care in a hospice?

Yes. I’ve been going regularly to the hospice for the last couple of years since the district nurse who came out initially recommended that I might be interested in going for massage there. And there’s this very small hospice in our town that does day care and also has about four beds, I think. And most weeks I go for an aromatherapy massage, which is lovely. It just keeps the stiffness at bay a bit and is very soothing and relaxing. And having been there, I would feel quite happy to spend time at the hospice for short periods of time to give my husband some relief if it’s necessary. And also if I can’t die in my own home, I would be second happy to die at the hospice. I feel very strongly I don’t want to go to hospital, and I want to avoid that at all costs. Yes… yes the hospice would be fine. And home would be best.

Footnote’ As a result of changes to the law in this area under the Mental Health Capacity Act 2005, available documentation is being reviewed both within the MND Assocation and across specialist palliative care services.

Things that we did early on that we were urged to do, or as suggested by the Co-ordinator were to think about a Living Will (ADRT), to think about powers of attorney and we did that very early on. The hospice introduced us to the bottle in the fridge scheme, which is brilliant. You know, you have a little sign on your door, a little green emergency cross, and in the fridge is a bottle with your Living Will (ADRT),with what medicine you take. So that, here’s my tip, if you need the emergency services, you know, they don’t whip you off to the hospital, or they don’t resuscitate you because they know, you know, even though that may be their mission statement, that you’ve got a different choice in life and, and I think that’s, that’s been very helpful to have that information.

That’s the first time I’ve heard that. That does sound like a good’

I’ll show you the bottle [laughs].

It does sound good.

It’s a Lions scheme, it operates countrywide apparently, and I think it’s brilliant, because one thing on the carers’ course we were told were, you know, that the emergency services their job is to, you know, keep you going. Well, that may not be what you want.

So and how did you found out, you found that?

Through the hospice. Oh, and that’s another thing, because other people we have known with MND have died in the district hospital and that is a definitely a place Bill doesn’t want to be taken to or die. I mean, we hope we have it, you know, everything, you can’t anticipate too much, can you, what will come down, but we hope it will be here and if not here, then the hospice where he, where he, where he dies, yes.

Footnote’The ‘Message in a Bottle’ scheme is supported by many local Lions clubs.