NOTES & QUERIES
In Song for Rosaleen (Massey University Press, $29.99), Pip Desmond recounts the struggle her mother, who died in 2009, had with dementia, and the different ways in which Desmond and her siblings dealt with it.
NORTH & SOUTH: This feels like it must have been a difficult book to write. PIP DESMOND: It’s very personal, so to that extent it was difficult, but it was also satisfying, to try to make sense of things.
N&S: What sort of sense did you make? PD: I came out at the other end with more compassion for everybody involved. Writing the book increased my admiration for Mum – the challenges that shaped her life and the way her spirit became fierce when it had to. And also a sense for myself and my siblings, in particular, about how difficult dementia is and that we did our best. So there’s a sort of peace around that, whereas when you’re in the middle of it and it’s so confusing and chaotic, you constantly feel you’re not doing enough. You never can do enough.
N&S: It’s clear that getting a diagnosis is an important part of dealing with dementia. PD: That was very difficult for us. It was hard to find professionals who would give us a diagnosis. I don’t know if that’s changed in the past 10 years. I do know other people who are struggling with similar situations and families who don’t want the diagnosis, but in my experience it’s better to know. Till then, everything feels incomprehensible. It doesn’t make any sense until you have the diagnosis.
N&S: Given your experience, what’s your best advice for someone with a relative who is diagnosed with dementia? PD: My advice is to get support from community groups to start with – the community organisations at the coalface: Alzheimer’s and dementia societies, respite care facilities. They are the people who are dealing with this extremely humanely and can support families through that next round of decisions.
The Chelsea Club [which provides activities and company for patients and time out for carers] was a big help to us. I don’t think Mum went along and had a fine old time making new friends, but she tolerated it in a way that she didn’t tolerate other care. And, more than just getting a break, we knew she was being looked after by people who understood her, because dementia is so different from any other illness. If caseworkers don’t understand it, then the way they treat people isn’t appropriate.
N&S: You talk about privacy concerns with sharing your family’s story. PD: I think writers who write about real people, especially families, have a grave duty of responsibility. It’s not easy making the decision to write a story that will unwittingly expose others. The responsibility weighed heavily on me and continues to do so and always will. I followed a process of consulting family all the way through – showing them drafts, so there’d be no surprises. That’s the only ethical thing to do. They agreed to let me use their emails, which was a huge act of generosity on their part. It meant I could give other people’s point of view without me saying, ‘This is what they think.’
Also, this is very much the version of my mother in my head. There’d be five other versions if they all wrote their story. I’m deeply grateful to them for their generosity.
• Pip Desmond will share her story with Carole Beu at the Auckland Writers Festival on Friday, May 18, 1-2pm (writersfestival.co.nz).