They were ‘three best friends’. Then one was diagnosed with dementia

Growing up in Sydney’s east, sisters Adelaide (left), 27, and Lucinda Miller, 24, were often looked after by their grandmother, Ann Miller, now 88. When she was diagnosed with dementia in 2018, it was an easy decision to help care for her.

Adelaide: I was a naughty kid. I know now it was because of the way my brain works [Adelaide was recently diagnosed with attention deficit hyperactivity disorder, obsessive-compulsive disorder and mild Tourette ­syndrome], but I was always being grounded. Lulu [Lucinda] never was. I’d steal money from Mum and Dad and buy lollies. I’d sometimes hide them in my Ugg boots but, the minute I got home, Lulu would be onto me. “Take off your boots,” she’d say. “You can’t do the wrong thing by Mum and Dad.” She has this innate sense of justice.

Our parents worked very hard so, early on, Nana Ann, our dad’s mum, came on as a third carer. She’d take us to swimming and music lessons, and we’d spend the school holidays with her. She taught us the dance to These Boots Are Made For Walkin’ in her living room. We were three best friends.

Ten years ago, when she was in her late 70s, Nana started showing signs of dementia and, just before COVID-19, she moved into a nursing home in Coogee. The diagnosis was hard for us to come to terms with, but Lulu and I easily made the decision to help care for her. We’d spend several days a week in the home, being with her and helping with her personal care.

The staff in the home are wonderful, but showering causes Nana to become very distressed – she doesn’t like taking off her clothes – and her distress can be confronting, so Lulu and I helped take on this role. If I felt overwhelmed, Lulu would step in and make a joke, or we’d sing a song and that calmed us all.

It was Lulu who suggested we make a documentary about Nana [directed by Anna Thrichet-Laurier, Nansie will show in select cinemas, September 15-21] to inspire others who are looking after someone with dementia. It was a vulnerable process, sharing this aspect of our lives, and Nansie’s, but making it, I realised Lulu knows me better than I know myself.

Last year, we shared a bed for 12 months: in Mexico, where we were surfing and learning Spanish, and in Sydney, where we were living with Mum and Dad to save money. It wasn’t strange at all. We have different love languages, though. I love giving Lulu big cuddles, but she’s like, “OK, three-two-one, off! Off me now, please.” Her love language is sharing quality time.

‘It scares the shit out of me that I might not be there for Lulu in person if Nana dies.’

Adelaide Miller

Mum and I shaved Lulu’s head while we were in Bali last year. She had long, thick hair, but realised she was hiding behind it, so we got the razor out in the hotel bathroom. It symbolised Lulu stepping into a new version of herself. She’d been carrying this profound grief after five people close to her died unexpectedly nearly six years ago. Shaving her head was part of her long journey, including being able to be openly and comfortably queer. Now I’m watching the confidence just seep out of her.

I’m moving to New York this month to start a master’s in political journalism at Columbia. I feel anxious about being separated from her, but it’s a healthy thing. It scares the shit out of me that I might not be there for her in person if Nana dies, but I also know Lulu will be OK. She’s stepped into this new strength.

Lucinda: I’ve always felt a strong sense of safety with Addie. We went to the same primary and high schools and she was always kind to me. Kids would say, “Wow, your sister’s so nice to you.” It was all normal to me.

I was quite reserved, but Addie could talk to anybody. I looked up to her. I also saw room for improvement. Until she was about eight, she wore her shorts pulled right up to her chest. I was pretty blunt about it being super-daggy.

A known bully picked on Addie for a bit in year 6. One day after school, I saw it happening and I stormed over and was like, “Back off from my sister.” The girl ran away. I remember thinking, “We’re such a team.”

Addie is a ray of sunshine. Her default ­position is positive. She’ll squeal when it’s a beautiful day and sing so loudly. She still hugs me for too long because she’s forever hopeful I’ll forget she’s hugging me.

‘I was able to lean into the emotion of the moment because I knew I’d be caught by Addie; she catches me no matter what.’

Lucinda Miller

Some of her behaviour growing up was quite impulsive. We now know she has ADHD and OCD, but it makes me emotional thinking about what I understood about them back then. On family holidays, she’d lag behind on walks because she had to keep touching the ground in a certain way, again and again. You start to get a bit exasperated and impatient. At a sleepover when she was 11, I remember her saying “Goodnight” over and over again for hours into the night. Seeking reassurance. I hold a lot of shame for how I probably dealt with that.

When we started helping to care for Nansie in 2019, Adelaide and I were a team again. During COVID, Nansie’s condition deteriorated sharply. There’s a scene in the documentary where I’m crying in a corridor with Addie after we’ve just spent two hours with her. A nurse has just asked her if she’s had any visitors and Nansie says no. That was a really tough ­moment. I was able to lean into the emotion of the moment because I knew I’d be caught by Addie; she catches me no matter what.
Addie has incredible empathy. We’ll be on the way somewhere and she’ll suddenly tear up because she’s spotted an old person eating a sandwich by themselves. I’ll say, “Maybe they want to do that.”

She allows herself to feel things, whereas I have deep thoughts and get anxious. Addie gives me permission to feel how I want to feel and not just the “good” emotions. I marvel at our relationship; it’s like walking through the world with armour on.

It’s going to be really hard when she goes to New York. She’s my soulmate. I don’t worry about her navigating the world because she’s brilliant. I do sometimes worry what I’ll do without her, but I’m just so proud of her – and I’m OK with it being hard.

twoofus@goodweekend.com.au

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