"I'm grieving every single day." Fiona Falkiner on the heartbreak of her mum having dementia.

On Christmas Day, several years ago, model and TV star Fiona Falkiner’s mother Jill was driving a road she’d driven a thousand times before. It was from her parent’s place to her own home, when suddenly she forgot where she was going. It was at this moment that Fiona and her family knew it was time to act. 

“Around this time, we agreed to get her tested and I remember the call from Dad saying Mum's been diagnosed with Alzheimer's,” Fiona tells Mamamia. “As devastating as it was, I kind of already knew.” 

Fiona had anticipated this day for seven years. During that period, she’d watched her “go-getter, determined” Mum slowly become more inward, slowly retreating from the B&B she ran. She’d avoid phone calls, think people were stealing from her and barely recognised friends in the streets.

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"At one point she got super paranoid and thought someone was breaking into the house," Fiona recalls. "Dad got the police involved because Mum's saying 'Someone's been in the house. Let's change the locks'. And at that point, he's like, ‘Well, my wife has said this has happened. So obviously it's happened’. But unfortunately, we know now that it most likely didn't happen." 

The diagnosis, while heart-wrenching, brought a small sense of relief. It provided an explanation for Jill's behaviour. Fiona’s dad Peter could explain to people in the small Victorian town where they live why Jill wasn’t saying hi, that she wasn’t being rude. “She couldn't help it. She couldn't put places and names together,” says Fiona. Peter could even enlist the towns help when she’d go missing - which she frequently did. “When the town knew what was going on with Mum, they’d be able to send an alert and people would look for her when things happened. Because of this, she was always found,” adds Fiona. 

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Then, as many stories seem to go, COVID hit. “We didn't really get any access to her for like a year and a half,” says Fiona, who lives in Sydney. “It was a long time between visits. During that time, she really, really deteriorated. From the last time I saw her [before lockdown] to the next time I saw her, it was like Mum was gone. It was really hard to take.”

Now at 73, Jill resides in a care facility – a decision that Fiona's father, Peter, initially resisted. "I guess he didn't want to lose the love of his life. His person," says Fiona. "They've been together since Mum was 17. They were perfect. And he'd never been without her."

Fiona finds herself living in a state of a prolonged farewell, a reality shared by thousands of Australians grappling with Alzheimer's. "I'm mourning the mum that I've lost but she's still here," she says. Jill's ability to communicate has dwindled, and she now only finds solace within the confines of the care facility. Some days, she recognises Fiona, and their interactions are filled with warmth. On other days, confusion and agitation take over.

“I actually have to try not to think about her every day because I get so emotional,” Fiona says. “It's so hard to process that loss every day. I’m grieving every single day.”

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It's the not knowing what to expect that’s the hardest for Fiona, who admits that driving to see her mum often makes her feel “nervous and anxious”. She says she's learnt to “not try to bring her back” but to bring touches of familiarity and happiness to her mother's life. "I used to be a makeup artist so I'd always used to do mum's hair and do her makeup before she got sick. So [last trip] I took some makeup down and glammed her up, which she seemed to enjoy. It was really nice. It ended up making her smile."

For Fiona it’s also about clinging to the small but beautiful moments which she often shares on her Instagram as a way to shed light on this “cruel disease”. She recalls a past Christmas that saw her mum and her wife Hailey dance to carols, a visit where her mum hugged her son Spencer, and a time that her mum, despite losing speech, laughed with her sisters.  

But something that makes her smile most is when her mum still allows her dad to hold her hand. “She often gets quite agitated and doesn't really understand if you want to hug or hold hands. But when Dad does it, she allows it. She just sits still.” 

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