Liz Y
Liz was formerly a hydrologist (environmental scientist). She and her husband moved back from New Zealand after she was diagnosed to be closer to family. Ethnicity: white British.
Liz was diagnosed with an inherited form of MND in 2004. Because her father and uncle had died of the condition, she knew what to expect, which was both helpful and difficult.
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Liz’s interview is from our MND section which was published in 2008 (see Liz Y's MND profile). As she had an inherited form of the disease, some of her experiences have been included in this module on inherited MND.
Because her dad and uncle had died of the disease, Liz Y understood the “enormity” of her MND diagnosis straight away. This was helpful in some ways and difficult in others.
Because her dad and uncle had died of the disease, Liz Y understood the “enormity” of her MND diagnosis straight away. This was helpful in some ways and difficult in others.
Yeah, so, I think with, when I was diagnosed having had the family background and having the familial side has meant that it did let me take on the enormity of it straight away, and not really – I didn’t go through a denial phase. I knew that this was for real, and it kind of made sense, and that – “Get on, get on living”, you know. Time really is limited. But also look at what you can still enjoy. You know, I remember holidays with my father when he was ill with fondness and drinking glasses of wine on the patio with him. So, I remember many good times when he was ill, and that helped. But then on the downside you do know the enormity of it, and you do know that it is very real, and it is hard. And so, it’s, having familial, I think, and experience of it first-hand within the family is very, it’s helpful and it makes it harder as well. Yeah, it’s very interesting.
Focusing on the bigger picture gives Liz Y a sense of calm. She feels that without disease, she wouldn’t be so conscious of the richness of life.
Focusing on the bigger picture gives Liz Y a sense of calm. She feels that without disease, she wouldn’t be so conscious of the richness of life.
Yeah, I’m, I was brought up Church of England 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 do think that it sort of, having the illness and doing the 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 that in turn allows you to see what is rich about life. So, 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.
For Liz Y, receiving care from her husband negatively affected them both; having professional care helped them “re-establish that normal relationship”.
For Liz Y, receiving care from her husband negatively affected them both; having professional care helped them “re-establish that normal relationship”.
From your perspective, what was it like, you know, having other people come in to do care instead of your husband?
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 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, 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 anymore. 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 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 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 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, which when you've got people close to you is harder [laughs]. And I'm finding that now as well where I've got a lot of support from our family here - phenomenal. I don't want to ask them to clean my bathroom or tidy my lounge or, you know, clean the kitchen. 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 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 it. Whereas if I ask my, my relatives to clean the bathroom, and they don’t do it how I want it, then I would struggle with that.
Yeah, yeah.
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 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 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, but when it’s a changeover of people all the time, I find that hard.
For Liz Y, it is the occupational therapists who make a difference to her life. She relies on them to suggest aids and equipment before she might want to think about these things.
For Liz Y, it is the occupational therapists who make a difference to her life. She relies on them to suggest aids and equipment before she might want to think about these things.
I think a point that I would make is that as I mentioned to you before it’s not the doctors that really make a difference to my life with MND. It really is the therapists. So it really is the OTs, primarily for me the OTs, and now the carers, really. And it’s those hands-on people that day to day make my life easier and things more accessible. The doctors aren’t - it’s not that they’re no use to me - but they’re not crucial in this illness at all. But the OTs and having a good OT and having a good relationship with them, really, I’ve been really lucky with the two OTs I’ve had. Having a good relationship with them is really good. And it feels like, they’ve both made me feel like they’re only working for me. And I can ask them for anything and they’ll do their best to get it for me. And that I can try anything as many times or, you know, and that’s really great. Because they are, little things do really make a difference and open doors for you, literally, 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 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.