“One remembers my name, and the other doesn’t”: My Two Nains with Lisa Heledd Jones

This film was made by digital storyteller, and artist Lisa Heledd Jones. It explores through words and images how she felt as her grandma (or ‘nain’ in Welsh) began to lose her memory. The film is short and powerful. It confronts the idea of memory as identity, and how the loss of memory can almost create a new person. I called her up to ask her more about her experience. Her memories of her nain, and her thoughts on why memory is so hard to talk about are below the film.

When I started my first digital storytelling project at the BBC I wasn’t allowed to tell other people’s stories until I had made my own. I had to go through the experience myself. I could have talked about anything, my favourite shoes, my hobbies but actually given the space to have three minutes to talk about anything I chose to talk about my grandmother, which we never did as a family. We didn’t speak about her Alzheimer’s apart from practical things like who’s going to visit, or what are we going to take her for Christmas. We didn’t talk about what we felt about her Alzheimer’s, or about the fact that she couldn’t remember our names anymore or that she didn’t really speak anymore. We didn’t talk about that. So I chose to articulate and reflect on how I felt and coped with the loss really, of this grandmother who used to be a huge part of my life, and her loss when her memory went.

“It was like a raw nerve, an open wound.”

It’s hard for people to talk about the effect of memory loss. I think for us as a family that was because it’s so emotional. The idea that someone has lost their memory — there are flashes of thinking about that, and then most of the time you can’t think about it with any great depth, or at least we couldn’t. It was like a raw nerve, an open wound. It was just too painful. So everytime you’d think about it you’d stick the plaster back over and cope with the everyday.

Memory is what makes us people, what makes us human. If you’re with your grandmother or your mother and she no longer remembers your name, there is something so hurtful about that and it’s not the person’s fault in anyway but it’s incredibly painful. They are losing their identity and that’s what memory means in a way, it’s who we are. In so many ways the memories make us who we are and so as soon as you think about that individual that becomes heart breaking in itself, because that person is no longer the whole person they used to be. It’s almost the rubbing away of someone’s personality. That’s how I felt about my grandmother. She was slowly slipping away but she was still there. You know it’s not going to get better so you’re facing it. It’s a diagnosis where there’s no other direction for it to go. We spend all of our time trying to be present and enjoy what we have now, but when you’re faced with something like Dementia or Alzheimer’s it actually forces you to think about that diminishing person.

There’s something about being the granddaughter in the situation too. I hated seeing my mum upset. The idea of seeing your mum or your dad crying is one of the worst things in the world. So I took on a role of always making jokes. It sounds awful but we’d find ways to turn the whole situation into a funny thing, light heartedly. I don’t think it’s a bad way of coping — it’s a way a lot of people end up coping because otherwise it’s too humanly tragic.

“It’s a way in to start talking…”

I didn’t know if I was going to share the film with my family but as soon as I wrote it I was like, oh yeah, I want to share this with them. My mum loved it. She found it really really difficult but she loved it. She didn’t realise how much I felt and thought about it because we just didn’t talk about it, and also it was a small celebration of my grandmother and the ways in which she used to be a part of our lives as well.

I didn’t think that anyone outside of my family would be interested, but it’s been amazing. I show that story when I’m training, and that’s over 10 years on now. People are so often moved by it and want to talk to me about it because they themselves have someone in their lives that’s suffering. I don’t think it’s anything I’ve said or done, it’s more just the fact that it allows people a way in to start talking about this big thing which is sometimes very hard to talk about. And I think grandchildren don’t often talk about it. But there is something about that loss of a grandparent ,and my way of coping was to think of her as two separate people —the grandmother before and the grandmother after.

I definitely think there is a huge link between my grandmother’s Alzheimer’s and the work that I do. I think that partly it came from the fact that my grandmother started with Alzheimer’s when I was about 13. I was still of an age where you take your grandparents for granted. You don’t think about asking them questions, or the fact that they won’t be there one day. When I became an adult I suddenly thought — I can’t ask her anything now. I don’t know about her childhood, what it was like when my mum was little. So there was something about the idea of digital storytelling that was all about helping people to tell their stories in the right way, and giving them space to tell it. It was because the opportunity to ask that person those questions was lost — even though the person was still there.

Capturing stories: “Her voice is something I don’t have, and I regret that hugely”

People I work with always seem to think that everyone else has an interesting story that should be captured and that they don’t and so part of my job has always been making people feel confident enough that they believe they have something valid to share. When it comes down to people’s memories and past it very often needs a bit of work to help people believe that what they have to say is important.

Something I’d really like to do is to encourage people to go and record others because to expect people to suddenly go ‘I know, I’m going to tell everyone about my memories!” is really difficult and unlikely. But we all have people we always think we’re going to record in the future, but when it comes to it it’s often too late. About 5 years ago I went to live in North Wales to be with my grandma, not the one with Alzheimer’s, a different one. She was 99 years old but was absolutely switched on, she was brilliant. The plan was to move up to North Wales and record her for a year and I’d taken redundancy and everything. The day after I moved up she had a heart attack and a week later she died. So I never got to record her, not a single line and so her voice is something I don’t have and I regret that hugely. I mean, it happened but what I’d like to do with that regret is to in some way inspire other people. To actually just think, look you’ve got your smartphone, go and record even a tiny bit with the people that you’d like to record.

Lisa’s nain lived with Alzheimer’s for 14 years. She died in 2006.

Lisa Heledd Jones. Holding a mushroom.
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