Liz Z

Age at interview: 59

Brief Outline:

Liz is 59 and works as a community matron in supportive and palliative care. She is married and has an adult daughter. Ethnicity: white British.

Liz found out about MND in her family when she was 20, after her mother was diagnosed. Although knowing that she could develop the disease has been a worry throughout her life, she feels her experiences have had a positive impact on her career in nursing.

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Liz was 20 when her mother was diagnosed with MND. She then discovered that her grandmother had also died of the disease, although it was previously documented as ‘creeping paralysis’. At this time, Liz’s main concern was for her mother, who she cared for at home, and she did not really think about the implications for herself. A couple of years after Liz’s mother was diagnosed, her uncle also developed MND. Liz and her sister went to see a geneticist, who told them that they have a 50% chance of inheriting the disease. 

Because no samples were taken from her mother before she died, Liz does not know the genetic variant of MND in her family. Because of this, she would not be advised to have pre-symptomatic genetic testing, but she feels that finding out her genetic status would not be beneficial anyway. She points out that there is “nothing that can be done" and she doesn’t think that having the test would have changed her decision-making throughout her life. She also feels that receiving a positive result would make her more anxious. If she develops symptoms, Liz would opt to have genetic testing so that her daughter would have this information.

Liz describes knowing that she may develop MND as “a sword hanging over your head”. 
It has profoundly affected her views and perspectives and how she has lived her life, including her mental health. Because her mother and grandmother died at 57, Liz didn’t expect to live past this age. As she has gotten older, she has become particularly aware of possible symptoms, such as muscle weakness and twitching. She has been to her GP who has referred her for EMG tests, which have both come back negative. Although this has been reassuring, MND is “always in the back of your mind”. 

Although her family history of MND has affected Liz in a negative way, she feels that it has had a positive impact on her career. Caring for her parents influenced her decision to go into community nursing, as she wanted to support people in their own homes and help them have a good end of life. She now works in supportive and palliative care, and finds her experiences help her relate to patients and have difficult conversations. 

When dealing with MND, Liz’s husband and daughter take a different approach to her, in not worrying about things that might never happen. Liz has been open with her daughter about MND from a young age. She feels that “honesty is the best option” but acknowledges that parents know best how their own children may react to this news. Liz has cousins who she can talk to about MND and who support her when she is worried, although they do not discuss it frequently. She feels it is more “at a distance” for her cousins, as their parent has not developed symptoms. 

Liz’s approach is to “plan for the worst, hope for the best”. She is hopeful that she won’t develop MND, but has prepared for the possibility that she may, for example by putting in place an advance care plan so her wishes are known. Liz keeps up with research around MND as part of her work. Hearing about the latest research gives her hope that there will be a treatment or a cure in the future.

Over the years, knowing she could have inherited a gene variant linked to inherited MND has affected Liz Z’s mental health and the way she feels about herself.

Well at the time, I didn’t acknowledge that it was going to affect me. I mean, I was more upset about my mother. Over the years, it’s become much more of an influence on my mental health, actually. It hasn’t helped my mental health, and to have that lurking in the background all the time, it does make you feel a little bit hopeless and helpless. Because even now, even if I was diagnosed, I mean, 40 years ago, my mum was diagnosed, there was not a lot then. It’s no different now, really, other than the fact that, thank God, it’s being researched and they’re looking for treatments and cures. But for me, now working with patients with MND, knowing that I still might develop the disease, it’s quite difficult to be positive all the time. You sometimes think, ‘What’s the point?’ I’ll be honest. And I know that when I hit 50 and I started to put weight on, one of the things that crossed my mind was, ‘Well, I need to put a bit more weight on anyway, because if I do get MND and I can’t eat, I’m going to lose weight,’ so it really does change the way you think about yourself. I might never get it, so… but you just don’t know, you really don’t.

Although you think it doesn’t impact on your life, for the last 40 years I’ve lived with the possibility of developing it at some point. And because both my mum and her mother died at the same age of 57, the years from 50 onwards, I was living in dread of symptoms and every twitch, because I was expecting to die at 57. I didn’t expect to live past 57, which changed the way I viewed life, way I lived my life, the way I thought about life, and it was a huge shock when I got to 57 and I was still going.

Liz Z is “constantly worrying” about possible symptoms. Going to the GP has made her feel like a bit of a “hypochondriac”; she doesn’t think other people understand that “overwhelming fear”.

Because I remember my mum telling me that she was on holiday in New Zealand and, with my father, and she bent down to look at something in a glass cabinet, and she couldn’t get up again. And everyone was teasing her, they said, ‘[mother], you’ve had too much to drink,’ and that was the first sign that she could identify that she’d started to get weaker in the limbs. And so, with age, we all change. Bodies change. I’m less able to do certain things, I’m not great at kneeling on the floor now, I have a bit more trouble getting off the floor, and of course because I’ve got that memory in my head of my mum saying that, I’m constantly worrying. And I talk to – I work with physios and things and I say, ‘Have a look at this, what do you think?’ Go to the GP, ‘Look at this,’ I mean, my hand, I look at my hands to see if there’s any muscle deterioration, you know? You check things. 

And if, I remember laying on the bed once and my leg was, my calf muscle was twitching, and muscles do twitch innocuously, and I went to the GP and I said, ‘I think I’ve got MND,’ and that was when I had the first EMG done. Turns out it was nothing but it, and then you feel a little bit like a hypochondriac, that you’re going to the GP with all these things. I mean, I went to the GP last year and I said, ‘I’ve got fasciculations in my hand,’ and she looked at it and she said, ‘No, there’s nothing to worry about,’ but for me, there is something to worry about. And I don’t think people understand that worry over, sorry, that overwhelming fear.

Liz Z has pursued a career in community nursing with a special interest in MND. She has used her experiences of her mum’s illness to help others, though this has been emotionally difficult at times.

I qualified as a nurse before my mum had died, and then after she did die, I stopped nursing for a while. But when I went back into nursing, I went back into community nursing, so that was 1990. So quite a long time, 30 years. The reason was that the nurses that looked after my mum really impressed me, so since then I’ve been working in the community, and I’ve been drawn towards people with MND, and I’ve worked with the focussed teams that have supported patients with MND in the community. Where I work now, I work very closely with the MND centre at the hospital, and the MND patients get referred to me because of my special interest. 

So, it’s enabled me to… I think it’s enabled me to break through some of their hesitancy about discussing things, that, because I can share with them my experience, and I had a lovely lady who didn’t want to talk about her illness, didn’t want to talk about her diagnosis, and I just said, ‘Okay, we don’t have to.’ So, at the end of the first visit, I said, ‘I just want to share with you that my mum did have MND,’ and that opened the door for her to be able to ask questions and talk about her illness. So, in a way, I’ve used my negative experiences to enable me to help people and families with MND, which is, if anything comes out of the whole experience, that’s one of the good things. And I still support the MNDA group local to where I work, I belong to the MNDA, I use all their stuff to help patients.

But it’s not only the MND patients, it’s also other neurological patients who have similar symptoms. So, in a way, my thirst for knowledge about managing MND has enabled me to help lots of people that I wouldn’t otherwise maybe have come into contact with.

I get too involved with them and I… it’s been a struggle for me, emotionally, at times, to put boundaries in place. But it’s not interfered with my ability to do the job, and I think that you have to be vulnerable to be able to be a good nurse. So, I think it’s… it has been a blessing and a curse, but you have to balance it out, I think. There’s good and bad in every experience, but it has been difficult with some of the patients, especially ones that I’ve looked after for a long period of time.

Liz Z emphasises quality of life at the end of life. Although she has put in place an Advance Decision to Refuse Treatment, this document is “not set in stone”.

I’ve got an advance decision to refuse treatment, which are very easy to fill, are available on various websites, and you can be very specific about what your wishes are. You can’t opt for treatment; it’s opting out of treatment, so you can be very specific. For example, say if I get this and I get this, and I’ve put very specifically that if I develop motor neurone disease, I do not wish to have antibiotics to treat any chest infections or pneumonia because I don’t want to prolong the illness by any means. I don’t want to go to hospital or anything like that. And that’s a legal document. And I’ve also decided, I also would not want to be resuscitated.

So that’s in my medical records, my family are aware of that, anyway. But it’s, the advanced decision doesn’t only cover the motor neurone disease, it covers other things as well. So, it’s just for me, personally, I’ve seen lots of people at end of life, who haven’t made plans or haven’t put wishes down, who are kept alive, whose quality of life is not good. And quality of life is the most important thing, and I think that if we had more choices at end of life, it would be more relevant to enabling people to decide on their own quality of life and what is important to them. And there are people, there are lots of organisations that can help people do the advanced care plans. 

Out of the area that I work in, we do our own advanced care plan, which is not a legal document, but it’s more like a statement of wishes, but it encourages people with MND to, or any illness, to record what their wishes are, preferred place of care, preferred place of death, how they would want to be cared for. Even tiny things, what music they want to listen to, what they would want or not want to watch on the television, because you go off into people’s houses for any patient who can’t speak for themselves, and the carers will put on some horrible TV programme and if I was the person sitting in that chair and I was looking at that… so it’s important to record your wishes, basically. You don’t want to be sitting in a chair, watching something that you really wouldn’t want to watch. So little, tiny things can be really important, and as we know with MND, little things are hugely important. 

I know what end of life looks like, I know how it can be and how sometimes it is, and I know that sometimes people’s lives are extended when really they should be allowed to die. And I don’t want to be kept alive, I just want to be allowed to die when my time comes. It’s not a hard decision. Having said that, I have said to my daughter that I don’t want to die before her graduation, and if she gets pregnant, I don’t want to die before her baby’s born. So, what we have to remember is that any of these documents are not set in stone and that they can be changed. 

Although she didn’t plan her pregnancy, Liz Z never considered not having her daughter. It was important to hear that her mum would still have had her if she had known she would develop MND.

I didn’t even think about it. I’ll be absolutely honest, it caught us by surprise, but there’s no way I wouldn’t have had her. And I guess that’s how my mum felt, and if, if someone had said to me before we met, my husband and I, that we were going to have a child, would we still want one? I honestly can’t tell you what I would have said. I honestly can’t. But having her now, there’s no way I wouldn’t have had her. So, it’s, I think it’s one of those things, that when the decision is taken away from you, then you have to live with that decision. And having to make those decisions is, well, it’s awful. I don’t know what I would have done if I’d have had that decision to make. I didn’t have it. We weren’t planning on having a baby, it just happened by surprise. And it did not enter my head not to have her at any time while I was pregnant or any time after, did it affect me.

And I remember asking my mum if she’d have known about the fact that she might inherit the disease that her mother had had, would she then have had children? And this wasn’t long before she died, and she actually did say that it wouldn’t have changed her mind because we were a blessing. But obviously, I’ve got one child now and I wouldn’t have not had her if I’d have thought that I was going to inherit the disease, because it’s a late onset in our family, reasonably late onset. And you can live quite a long life in 57, 56, whatever, years. But now, of course, if I don’t inherit, then my daughter won’t. So, it’s that what if, maybe, we just don’t know.

Liz Z felt a lot of anger when caring for her mum. Since then, she has struggled with feelings of guilt.

I get guilt that I didn’t, I felt I wasn’t doing enough, the fact that – like I said before, she went into the hospital towards the end of her life, I’m, I feel guilty about that. And I guess I had to suppress a lot of emotions, so consequently I’ve had trouble with emotional management since, where I’ve, I had to put up walls and barriers, I became very angry, I remember one episode where my mum had to go for an x-ray at the hospital and they had her in… I think she had pneumonia, can’t remember. We went to the hospital, and we were in A&E, and she was there for hours, sitting on a hospital trolley. And I was so angry, I went to the toilet, and I threw the door open and fractured my finger because I’d got it stuck in the door. And that was just anger at everyone because… well, angry at the situation, angry at God, angry at everyone because my mum was left in this position. Because she had the disease, everything made me angry so … because I couldn’t express how I really felt. 

Liz Z has talked about illness and death with her daughter from a young age. Growing up, her daughter knew her gran had died of MND and over time Liz explained that it was in the family.

I was also going to ask you about your daughter and how you’ve kind of shared the information about MND with her?

I honestly can’t remember. I suppose when I was talking to her about my mother not being here because obviously, she died before my daughter was born, and so I explained to her that she died, and also my father had died by then as well. And the, at some point I explained to her that she had MND, and as she was older, you know, that it was in our family. We’ve always had an honest and open relationship and she’s quite mature. She’s, it’s not something we dwell on, it’s not changed our relationship at all, so I think honesty is the best option, but obviously people know their children the best and it’s how they think they will take that sort of news.

So, was it when she was quite young that you started having these conversations?

I would say probably when she was about eight or nine. My uncle who was her adopted granddad, died when she was about eight or nine, so death was a conversation. And we talked about illnesses and things. Being the daughter of a nurse is not, probably, an easy thing because we talked about all sorts of different things at home when she was small. She learnt different parts of the body by the correct biological names when she was very little, so it’s just something that we talk about. There’s not any issues that we don’t discuss, and in that way she can come to me and have those conversations too. But she knows that there’s the possibility that I might inherit the disease, that I might develop it, but it’s not something that we talk about all the time.