Liz - Interview 39
More about me...
Liz's father and uncle both had MND; her uncle died about 20 years ago and her father about 10 years ago. She and her sisters have therefore known for some time they might also inherit the condition, but Liz always assumed if it did happen to her it would probably be later in life, like her father. At the time of his death, Liz had already met her future husband at university, so they knew when they got married that it was a possibility.
Liz and her husband emigrated to New Zealand about three and a half years ago in early 2004, to experience a different way of life. Shortly after they settled in, Liz noticed her right foot was dropping. Given her family history, MND was diagnosed within about 3 months. It was a huge shock for both of them, and the first thing they had to decide was whether to come back to the UK. In the end they decided to stay in New Zealand as long as possible; as Liz says, they felt 'if ever quality of life was important, it was then.' She carried on working as an environmental scientist for about two years, at first full time and then gradually reducing her hours. Even when she decided to resign, her boss kept her on as a consultant so she could keep up contacts at work.
Her husband's employers were also very helpful in letting him take time at home to look after her, but eventually they decided to employ a paid carer so they could each have some independence. Liz felt guilty that her husband had to do so much for her, and feels much happier having someone whose job it is to provide care. It has made her relationship with her husband feel more normal again. Deciding to use a wheelchair full time also made life easier and more independent in many ways, especially when she got an electric wheelchair. It meant they could go out together again and he could walk by her side instead of pushing. However, as the weakness in her arms has worsened, it is a source of sadness for Liz that she can't hug her husband or reach out to touch him.
In 2007, they returned to the UK so they could be nearer family and friends. Getting a new care network established here has been tiring and stressful, and she misses the hospice in New Zealand where she had a group of friends who would meet regularly to chat and do things together. But she still enjoys life and has a lot of support from family and friends. Most of the time she feels content 'living in the moment', enjoying company, eating out, going out for the day. Sometimes when she thinks about the future she is scared about losing that quality of life, and worried about what her husband will go through. Meditating helps her restore a sense of inner calm and reflection on the good things in life. She says, 'If you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either.'
She thought she wanted to stop work, but she was glad her boss persuaded her to keep doing...
So I gave up work. But fortunately my boss at the time was really, really supportive and said, 'Right, well, yes, I'll let, I'll let you resign. But I'm going to keep you on as a consultant, so that you can still do the odd projects and do whatever hours you like.' So I was really, really fortunate. And at the time I said, 'Well, that's fine, but I don't want to do any more work.' But three months later I was glad of it. And it was lovely. I used to come in and do a day in the office and maybe half a day at home. And it was great to just keep my hand in and have that social contact, feel needed and feel a sense of worth, and, but not be dominated by the politics of work and not be bogged down. And, yeah, I, I really do appreciate his wisdom, really, in sort of saying, 'No, you hang on there.' And, and that was great. That was a real, that was quite a huge support for me actually. Yeah, it was lovely.
Yeah, well, I mean - well, another thing that my husband and I found was that for the last year we were, we were in New Zealand, as I say I was much more wheelchair-bound, and I really needed my husband's help, or someone with me, most of the time, or at least I couldn't be left for more than two or three hours. And, and my husband's employers were phenomenal and gave him an awful lot of time off, so that he was either working from home or he just was at home. And, and so we were together for a year, sort of at home together. And that was fantastic, because we could also go to the beach or, you know, do really nice things. But as my mobility decreased and also we lost the sense of a normal life, actually spending a lot of time together became detrimental. And it was actually, we were just getting at each other all the time, and we really missed the sense of normality. I think my husband missed a sense of motivation and worth, because although he was caring for me there wasn't, he didn't feel like he was achieving anything. And so that was one, also one of the reasons for coming back was that we, we wanted him to go back to work and work fundamentally on a sort of full-time basis, and, and then have people caring for me that were paid or, or relatives that could just do what was manageable.
And so that he could come home at the end of the day, tell me about his day and I could tell him about my day, and, and re-establish that normal relationship. And that, that has been great. That's been really, really good, to get that normality back. And so that he's got a focus as well that doesn't - and I'm not the focus of everything, although I like it to be sometimes [laughs]. Most, you know, fundamentally I don't want to be the, the thing that everything revolves around and everybody always making a fuss over me and 'What about this and that?' I just want it to be normal. And that's, that's really helped. And, which is quite counter-intuitive, really. Mm.
She had already met her future husband at university before her father died of MND. They assumed...
I can't, I don't really have a memory of any specific discussions, although, ...because it was matter of fact. You know, he knew that, we knew that, you know, my uncle had died and my father had died, and also their mother, actually. Looking back at the records now, although they diagnosed it as maybe a stroke or, you know, something like that, that was back then, but actually looking at it now it's likely that she had it as well. But they can't go back any further because she, they think that she was adopted. So that's where the family history ends. So I don't remember any specific discussions. But obviously [husband] knew as well as I did. Because it probably wasn't really clear until Dad died what the implications were for us. And I think we felt that it's something that affects older people.
Her father did not have a known mutation so she did not have genetic testing. She had already...
And did, did any of you ever have any genetic testing?
No. We, I know my sisters and my cousins did talk about it, and at the time there wasn't really any testing available. We, I think they were just starting to develop it and they'd found there was some testing available for the SOD-1 gene. But we, I think they tested my father's blood and found that it didn't have the SOD-1 gene mutation. So we felt that, you know, there was no point. But before that I think my sisters and I had decided that there wasn't any point anyway.
It wasn't really going to be of any help to us because it wasn't, it wasn't going to change any decisions we made or the way that we led our life. It wasn't, the testing isn't conclusive enough. You know, that, we were told that, “Even if you are found to have the SOD-1 mutation, then you may well not go on to develop it.” So we didn't find that it was very helpful. And it wasn't an option to us anyway in the end.
When you say it wouldn't affect any, any decisions that any of you made, is that also true about having children?
I think… well, [husband] and I did go and see - oh - my husband and I did go and see a doctor that specialised in genetics and he - just to talk about this issue when I was first diagnosed. And we felt that the, if we had the test, it wasn't going to give us enough conclusive evidence. And also for us, having children when I'd already been diagnosed was going to be too much of a bigger strain. I think for my sisters, we - I don't think it would have affected their decision. I think - although now, in hindsight now that I've been, been diagnosed, I don't know. We haven't really talked on that level. Although I know that within the family we're all very keen to kind of stamp out the gene. And if testing is going to allow - the research into testing is, will hopefully allow decisions to be made in the future that will really help stamp out the genes, mutations, or you know - and embryonic testing and that sort of stuff.
She had a PEG fitted while her lung capacity was still good - the procedure was simple. So far...
Have you ever used it at all?
No. We, I have to flush it every day just to keep it clean, but, no, and I'm - no. It's just - I tell people it's just, just an accessory, it's just for show at the moment [laughs]. But I'm looking forward to getting that tube, you know, cut down and just, you know, not having that. It was a bit of a, it was upsetting to first see it and get over that. But that took a couple of days, and it really wasn't a big deal. You, with this illness you, you adapt and you move on, you know, and just as you've mounted the next challenge there's another one that comes along. So, you know, you just, you just do.
The occupational therapists have been key people in her care. They help her plan what equipment...
Because they are, little things do really make a difference and open doors for you, literally, and, and make your life easier. And come up with suggestions. It's very difficult for them because they need to suggest things to me equipment-wise before I might want to face it, but before I'm struggling. So it's not easy for - I don't envy their position, it's not very easy. But having the guts to say, you know, 'Have you thought about?' certainly when I was first struggling with walking, 'Have you thought about a frame? You know, that would allow you to get over being able to take a drink through to the balcony.' I would have resisted that at first. But then it's plant a seed and then, and then, you know, 'Oh, okay.' Because otherwise you don't know what's out there. And so, and they're really that, that link. So you might be struggling on with something, yet they could just say, 'Oh, why are you struggling? You could, you know, we've got this little gadget or that little gadget.' And things, equipment does make a difference.
Having a catheter has given her greater freedom to go out. She no longer has to worry about...
So having built up that trust with her, I had one fitted, and it, and it's been great, because what it now means is that I can go out with anybody for the day. I'm not restricted to only going out for two hours before I need the loo again and, 'Is there a disabled loo? And is there someone strong enough or even that I'd want to help me to the loo?' That's, all of that kerfuffle has gone. And it, and it's great. There are some downsides. It's, it's tubes, it's plumbing. It, you are sitting in your chair, really, for the day then. You're not being picked up for, two or three times a day. And, and I think that does in turn, can affect your, your bowels and make you more constipated. But that's, all of those things are small fry and easily surmountable compared to having to be pulled up and, and the indignity of people pulling your trousers down and'
'being able to do it.
'again, it's, it's sort of possibly slightly counter-intuitive, isn't it? That it, it actually makes you more dignified.
Yes, it does. And it, and, and now my father-in-law can help me and just, you know, fills a bottle for me from my catheter bag by just lifting up my trouser leg. And somehow, when it's in a bag like that, it doesn't, it doesn't seem personal. And it doesn't really - yes, it's, it's something that's, you know, it doesn't really mean like that you're, that he's helping me with toileting. It doesn't feel like that.
No, it's sort of removed, isn't it?
Yeah, it is, it is.
So in actual fact it's given me more freedom. And it means that I never think about how much I'm drinking. I can just drink away, have as many cups of coffee as I like without thinking, 'Oh, yeah, but if I have a cup of coffee now, then I'll need the loo in an hour. And, and my husband's got to go out.' All of that worry has gone. And that worry of, 'Oh, I need the loo. Oh, gosh, but, but I've only just asked for this and, oh, and she's in a really bad mood or he's in a really bad mood. Oh, God, I've got to ask them to' 'Or they're really tired and - don't, don't have any of that now. So that's given me a freedom actually. And, and you've got to manage it, but it, you know, it, it can work.
Having paid carers is fantastic because she doesn't feel guilty asking them to do things for her....
Fantastic. Because I could ask them to do whatever I liked, and I didn't feel guilty about it. I didn't feel guilty that he's got to do it all day. So I remember the time when we first got the carer in to help me in the mornings with showering and dressing, and it was fantastic. It was such a huge relief. Because we were finding that my husband would be helping me dress and shower and, and he wouldn't be dressed and showered himself till 11 in the morning. And then that would bother him, and I'd feel guilty about that. And that's, and that's just the start of your day, you know. You've got all sorts of other challenges to come. As soon as we had my lady to come in in the mornings, [husband] was totally freed up. And I would come out in the morning, dressed, ready - ching - and we could have breakfast together and start the day, you know, afresh. And then the challenges that we faced were manageable through the day. You didn't start the day with the biggest task. So that was nothing but positive, having care.
So it hasn't bothered you having somebody else doing the personal stuff?
No. I've, I quickly adapted to it, I think because by the time I took that on, we took that help on, I was really, [husband] and I were really at each other and were really ready to kill each other, you know [laughs]. So I was just glad for someone else to help and take that tension out, so that my husband wasn't my carer. And so it was nothing but a relief. The same, I remember the same feeling when I first used a wheelchair.
We used to live in a house about 800 metres from the beach and it was a nice ten-minute walk. And we used to like to walk down and sit on the beach or go for a coffee at the cafe or whatever. And when my, when my walking became difficult, we couldn't do that any more. And I used to - you know, we could drive down - but I used to miss being able to walk down. So as soon as we got a wheelchair, 'Great, we can walk down again, and we can walk along the promenade.' And it allowed me and freed me up to do things that I hadn't been able to do. So I think because we'd left it relatively late, till things were getting frustrating, then actually it didn't become, it wasn't a big deal, whereas I know other people struggle with going into a wheelchair. But it, it gave me freedom in some ways. So, yeah, it's interesting.
That's interesting, it is interesting. And I guess, I mean in a way sort of having your husband do all the personal care actually becomes quite unromantic in a way.
Yes, yeah. And it wasn't that he was, wasn't good at caring for me. He was very good. But I didn't want him doing everything. And I'd feel guilty for that. And, you know, I'd, I'd ask him to keep the shower on while he was washing me, because otherwise I'd get cold. 'No, it was a waste of water.' Well, as soon as you get a carer in you can have it how you like, you know. So you don't get any backchat, [laughs] which when you've got people close to you is harder. And I'm finding that now as well where I've got a lot of support from our family here - phenomenal. I, I don't want to ask them to clean my bathroom or tidy my lounge or, or, you know, clean the kitchen. I don't, I don't feel comfortable asking people who are giving up their time. And I - but yet I'm quite happy to ask things of people that I'm paying, or that that is exactly what they're there for. It, it makes me, I feel like I'm much more independent, and that they really are an extension of my arms and I can tell them exactly how I want, want it. Whereas if I ask my, my relatives to clean the, the bathroom, and they don’t do it how I want it, then I would struggle with that.
And that would frustrate me as much as it not being done. So, yeah, it’s actually, I’ve actually found it good. What I haven’t found good with care is where the people change all the time. I find that really really hard. And that one challenge has been probably the biggest challenge for me, moving back to the UK and setting up with new carers is, I’ve set up through an agency to start with and I didn’t have a key worker. And I think I, I think I counted that in the first two months of being here I’d met twenty carers. And that is really dull, telling people how you want things all the time. And, “Not like that or like that” and, yeah, really quite tiring. When I, when I have carers in, I just want to babble on. And so that the fact that I’m being washed and dressed becomes irrelevant. You don’t even really think about that, to the point where you think, “Did I, did they put any deodorant on me? I can’t really remember”, because you were gassing on about something. And, and, but when it’s a changeover of people all the time, I find that hard.
She enjoyed a hospice support group in New Zealand but now she's back in the UK she's not sure...
But after the first time I went I really enjoyed it. And I, I found quite a bond with those girls that, although they're completely different people and different ages, different interests, we had a sim-, we had the same outlook on life. Little things like, you know, we'd always be going on holiday. And, and when someone said, 'Oh, I'm off to Fiji in two weeks time' the other girls wouldn't say, 'Oh, aren't you lucky? I'd love to go to Fiji.' You know that you're not lucky, you know that you're making the most of the time that you've got. And it, just little things like that that weren't said. So I miss them. And, and so when we moved to the UK, I was very keen to make contact with a hospice here and that network.
I haven't yet. And that's just really the time that I've been here. I did get a letter this morning from the MNDA inviting me to an event. And I'm going to need a bit of encouragement to go. Even though I've been to - I had this same feeling before I went to the, the group at the hospice before and, and knew that it was, once I went it was fine - it still makes me hesitant to do it again. And also, probably more so, with other MND suffers, sufferers. Even my cousin, my cousin's also suffering from MND, and I'm hesitant about meeting up with her, although we've started talking on the phone more regularly, and I do, I really like that. I like that we can both rant on and we find the same things frustrating, and that someone really understands. But in the same way it makes me feel sad that I can talk about those things with my cousin.
Yeah, it's a bit of a mixed thing, isn't it?
It's a mixed thing.
Because if you go and mix with other people who've got it, you're going to see'
Further down the road, potentially.
Yeah, and - yeah.
And I think that's the thing that is scary. And I'm not sure how it will benefit me at the moment.
Aromatherapy helps her breathing. She likes massage and has tried acupuncture. Meditation makes...
Do you take any other alternative, complementary therapies?
No. I've, I've, it's mainly been aromatherapy. I've had a massage, particularly of my feet. I get very bad circulation and blue feet. Although people think that they're just very tanned, so I just let them think that, but actually they're blue [laughs]. But, yeah, they get, they get very cold. And it's, it's actually just really lovely to have touch, you know, the feeling of human touch. So massage is lovely. I haven't really dabbled into reiki or acupuncture, really. I've had a little bit of acupuncture, but only a couple of times. And that's just really more down to availability than anything. I think if someone was saying, offering me some and 'Can I come round and give it to you' then I'd take it. But, you know, I think I just sort of haven't, haven't really found somewhere on my doorstep or to make it easy.
And I think in terms of those sort of things, I do, I do, I've done a mind-body-spirit course - a couple of those, actually, in New Zealand, and I've found them hugely supportive. They really, really have helped me, and really helped me think about life and things in a very, in a spiritual way. But not in a, not - that sounds heavy - but just in a very, opening my, it feels like it's opened my eyes, really, and has made me face a lot of things that weren't always that easy. But it's meant that I've processed them. And I think that's been much - you know, a really healthy approach for me. It's taught me meditation, and I do use meditation tapes, particularly if I have an upset day when I just sort of wake up and I'm just feeling really down, which I get every now and again. Again I'm lucky, I don't, it doesn't bog me down, but every now and again I'm just having a real down day, and, and if I put on a meditation tape and just do a half-hour meditation, I just come out the other, other side completely different and feeling much calmer inside, and stronger. So that's a hugely beneficial tool. And it, and that's what I felt like the course gave me, was tools to deal with things. It taught me belly-breathing, the value of water and, and just really the power of the mind really over your physicality as well. And really I know that if I did meditation every day it would be very beneficial for me. I still don't do it [laughs]. But I know that it's there to draw on if I need it.
She still enjoys her food and eating out, even though she thought she'd be embarrassed about...
Her lung capacity is reduced but her breathing is still good. Occasionally she feels a bit out of...
Pressure on her heels was uncomfortable at night, but a ROHO cushioned insert helped a lot....
People seem to feel awkward about reaching out to touch her hand or place something in it. The...
No, but - not too badly, actually. No, I haven't really come across that. I expected to, but not really. What I do find is that people will pass something to you, and I can't move my arm up to, to reach it or to shake their hand, but they won't bring it any closer. There's, it's really, really interesting. They've kind of got a, a physical barrier. And it, and it's personal space, isn't it? which they won't cross.
Is that even after knowing that your arms are affected? Because I just wonder if it's that people sort of think, 'Wheelchair equals legs.'
Yes, I think it is that. And, and so when people pass something to me, I'll expect them not to put it right in my hand. I'll expect them to, you know, leave a bit of space for my hand to then meet theirs. But then when my hand isn't moving or is just only, it's only moved its inch which it's going to, they're still very, very reluctant to put it in my hand. They just, they just don't know what to do. Yet my friend's 3-year-old came and gave something to me, and just put it straight in my hand. And it, so it's interesting. It's not, it's not till we're a bit older that we learn about personal space, and you just don't go past that. So that's frustrating, and I tend to, yeah, I tend to avoid those instances, and I, and I just get them to pass it to whoever I'm with. Because I don't need that, you know, I don't want that. I just avoid that encounter in a way. Yeah. And when people want to shake your hand or they come and greet you, yeah, I, I tend to find that people that are in the know will come and, you know, come straight to your hand straight away, and people who aren't are, are more hesitant or might even give up.
That's a bit upsetting. Mm.
Yes, it's a very difficult one, isn't it? Because I'm sure some of it is that people sort of associate wheelchairs with lower-half loss of mobility [yeah] and aren't kind of prepared [yeah]. So it takes them by surprise when you can't move it far enough to...
Yeah, and I do think that there's no malice in it. It's, it's just people don't have the experience of it. I wouldn't have, I wouldn't know what things would matter to me. But it, it's those little things. And it's, what I also find with, the most supportive people in terms of caring for me are those that can anticipate my needs and will ask me if I want things before I have to ask. So I don't - so I will, if I've got a friend with me all day or a, or a relative, I will much prefer it if they almost take responsibility for checking my bag, you know, and, and getting my catheter bag emptied, rather than me have to say, 'Oh, could you empty my catheter bag?' That's not nice for me to have to ask.
But - or for them to - I can't, I can't get anything for myself. So if they're not sat talking to me and the TV's not on, I'm not entertained. You know, if they go off and do something else, I'm not entertained, and I've got no way of reaching out for, to get my book or switch the radio on or, and so it's, again those people that are intuitive I find always notice that and say, 'Right, I'm just going to go and do this. Can I get you a book?' They'll, they won't just say, 'Oh, I'm just going to go and do that.' You know, they'll know that I, I need to be set up. Or, or they'll say, 'Oh, oh, you haven't, you haven't had a little nap' or something or, you know, 'How about we just make half an hour now and, you know, just have a bit of quiet time, or--' - but not in a patronising way. Or, you know, 'Can I rub your feet?' Lovely for someone to say, “Can you rub my feet?” I - because although they say to me, “We’re more than happy to rub your feet. Just ask me any time”, it’s another thing to ask. “I’ve already just asked you to get me a drink – ‘Get me this’ or, ‘Oh, no, not that straw, the other straw.’ Oh, now, can you rub my feet?” Yet for them to think of that and say, “Oh, oh, can I rub your feet?” that’s lovely. And it’s just little things. And they, and some people are, are naturally talented at it. And it’s, it’s lovely to see that.
She misses being able to show physical affection. Now she has learnt to ask people for a kiss or...
Because you can't hug and?
[tearful] I can't even reach out or, and touch them or, so that physical contact is hard. And to cuddle my husband - he has to cuddle me. I can't just stroke his back or rub his shoulders or squeeze his head. All those sort of tender loving things, I can only show it through words and my face. And that's hard. And I've kind of learnt with other people now that, I just ask, and when I'm having a close moment with people and I want to feel closeness, I'll ask them, 'Oh, give me a kiss' or, 'Come and give me a cuddle.' Or with my god-daughter I tell her that - she's only 3 and she calls me - what does she say? Not poorly. Yeah, she says I'm, 'Are you poorly?' And I say, 'Yeah, and that means I need extra kisses and cuddles.'
Her quality of life is still good, but she's starting to worry about what lies ahead. Her...
Have you actually put anything in writing about your wishes, or [shakes head] - no?
No. I think I've - it's only really started to occur to me just really in the last three or four months - and not in an overwhelming way, you know, just every now and again, and it won't upset me. Every now and again I just sort of think, 'Hmm.' Or, you know, little things like, 'Ah, so I am going to have to think about winter. Hmm. I was only banking on having a summer to summer, and you know, hmm, winter's going to be hard. Hmm. I would rather really opt out of that.' So not all of it is heavy thoughts, but it is starting to occur to me more, and it's something that I'm going to have to face. And I think it's just something that I've been working through, as I've been thinking about, 'Oh, right, Rilutek. Right, will I start taking that? And actually, hmm, no. Why, you know, why, why would I, maybe?' And it's not that I'm, I'm suicidal or wishing my life will end, because every day generally I have a lovely time. And, and I think, 'Phew, I wouldn't have wanted to miss that.' But it's worry for the future. I think if I really push myself on it, yes, I am, and worried for what my husband's going to go through as well [tearful].
I, do you have views about what you'd want to do?
No, that's too far away, far too deep. No, I haven't really got that far at all. I haven't looked at what my options might be. I'm quite a shallow person, so I'm quite able to keep myself in the moment, [laughs] and as long as it's sunny I'm happy. So, yeah, I think about the nice treat that I've got next round the corner, yeah.
Yeah, I'm, I was brought up Church of England and, and was in the church choir. And that was a very strong - my parents have both got very strong faiths. But I don't, that doesn't really do it for me. It's really more a, yeah, I'm much more neutral, I think. But I, I do think that it, it sort of, having the illness and doing the course [a 'mind-body- spirit' training course] has made me think about life and what life means. And what, I kind of get things in perspective and that, although I've got a very obvious illness and obvious baggage to carry around, everybody has in some way, whether it's emotionally and something, or something that doesn't have a label on it, or whether people are, you know, do have an illness. You know, everybody's got something. And, and that in turn allows you to see what is rich about life. So if, if you didn't have death, you didn't have disease, then you wouldn't quite see the richness of life either. And that helps me, yeah.
As a bigger picture, that helps me. And the smaller things, when I can't reach things or I just can't do things, that doesn't really help me [laughs]. That's just bloody frustrating. But there's a bigger picture, yeah, and that gives me calm.