Like a boy
This visit, Dad is finishing his lunch. He’s been
eating it with a knife, which one of the carers tries
to change to a fork, but it looks like it’s a ‘stubborn’
day. He is happy to see me and punches my arm
and starts ‘talking’ – making circles with his hands
and raising his eyebrows. He looks younger, there
is no strain, and I feel his caring and kindness.
The next visit he’s sitting by the door and says
hello when I walk in. He’s jumbling together
sounds that are almost words, saying all sorts of
things whose meaning I can’t fathom; I nod and
look at him. At dinner he doesn’t eat all the food
and a carer brings a banana for him, as he didn’t
eat much lunch either. I try and talk more with
him about how he is, which feels good, making
sounds together, being connected. When I say I
have to go he gives me a punch and waves. It feels
like it’s starting – the end.
From Dad, You’ve Got Dementia: Conversations with my father (The Cuba Press, 2023; p85)
Five things: Q&A with Kristen Phillips
If you had to say five words to tell readers what this book is about, what would they be?
Connection, aroha, reciprocity, grief, dementia.
This conversation about your book falls under our creative nonfiction category, but this is of course completely nonfiction – a life’s decline, recorded. But there are elements of the creative in deciding how to make a book out of real life. So, let’s begin there. When did you start thinking about how to make your dad’s story into a book, and how did you go about it?
The idea for Dad, You’ve Got Dementia (DYGD) came to me in 2015, when I was living in London. I was talking with Dad a lot on the phone; he was saying things like: ‘I’m not where other people’s memories are’ and ‘The things I remember I can’t recall’. Some of the things he was saying sounded like poetry to me. I wanted his voice to be at the centre of the book and to capture the way he was putting words together differently because of his dementia. I also found that writing down snippets of our conversations helped anchor me during my grief. So, the first part is mainly made up of tightly framed long-distance conversations between Dad and me.
The second part of the book is a series of vignettes, mainly set within a dementia care unit (‘Like a Boy’ is one example); they cover the last six months of Dad’s life – I had come back to New Zealand to be with him. Because Dad had a lot less language by then, the vignettes are my descriptions of what was happening during that time.
DYGD is creative nonfiction, but when I started to write it, I thought it could also be a how-to book (more purely non-fiction) that provided tips on staying connected long distance with someone who had dementia. As the writing of the book progressed though, I came to see that I wanted to focus on the poetry in the way Dad was using words, and on the reciprocity in our relationship, so I discarded the tips. DYGD is also, of course, a memoir and The Cuba Press lists DYGD as poetry/non-fiction; I like that DYGD can be included in all these categories.
The book begins with a phone call. What do you recall most about those calls with your dad, over the few years this book covers?
The phone calls in the book cover 2015 to 2018, although Dad had signs of dementia from 2011. What I recall the most was that he was always happy to hear from me – he knew my voice even if he didn’t remember my name. There was a turning point for me, where I learned to maintain the conversation by following Dad and not asking questions he couldn’t answer; this stopped us going around in circles of repetition and made it possible to have the variety of conversations that there are in DYGD. I also remember playing Bach’s Prelude in C major on the piano to him, over the phone from London, dozens of times; he always was delighted to hear it, responding as if it was the first time I had played it for him.
In one beautifully depicted scene, you conclude: ‘It feels like it’s starting – the end.’ Could you say more about how to write all of this with a sense of knowing the beginning, middle and end? How did the story of your dad’s life inform the ordering of the book, and did writing the end find its natural flow, or was it something you had to work and work at?
The conversation at the beginning of DYGD is the cornerstone of the book and so I am very glad Dad and I had that phone call; it sets up our voices and the reciprocity of the relationship. Writing the middle was helped by deciding not to include times and dates and all the stress it would have meant to try and get them right. I also wanted to reduce clutter on the page (my poetry background) and therefore didn’t worry too much about the order of events, as long as the general direction made sense.
The ending was the hardest part for me to write about, as I wanted to keep some moments of Dad’s last days private. I can see now that I had left out too much, the original ending was quite abrupt. Towards the end of the editing process, I was asked to expand on what happened when Dad died. After all the work on the manuscript, I found I was able to write a more detailed account, and this made for a softer landing in terms of the ending.
And, related to the previous question: It is nearly impossible to write about such difficult subjects without falling into sentimentality – yet you manage this beautifully. How did you keep the tone steady, and the focus where you wanted it?
Thank you. If I was aware of wanting to evoke some sort of feeling in the reader, I would cut those words. I tried to keep the focus on my words/thoughts/experience and what Dad was saying and doing, without worrying too much about the reader’s possible response. I also benefitted from some excellent editing that contributed to the evenness of tone.
Where to find the book:
BOOKHUB: https://bookhub.co.nz/p/dad-you-ve-got-dementia?barcode=9781988595696&search_key=Dad%2C+You
The Cuba Press: https://thecubapress.nz/shop/dad-youve-got-dementia/
Kristen Phillips grew up in Te Awa Kairangi / Lower Hutt. She lived in London for thirty years with her partner, the writer Mia Farlane, and during her time there, she came first in a poetry competition, completed courses at the Poetry School and started a writing group. As well as working on her companion book to DYGD and writing reviews of dementia books for the New Zealand Dementia Foundation, she works part-time for Dementia Wellington and Dementia New Zealand.