Sapini Unoi and his mother Mutalau have gained thousands of followers on their TikTok account. Photo: Marika Khabazi
A Samoan caregiver is using social media to highlight the realities of caring for someone with dementia.
Sapini Unoi and his mother Mutalau have gained thousands of followers on their TikTok account.
Unoi describes their online platform as his "love letter to Mum", sharing snippets of their daily routine and conversations.
Speaking to Pacific Waves, Unoi said when his mother was diagnosed with dementia eight years ago, he automatically assumed the role of caring for her due to being the youngest child and identifying as fa'afafine.
Mutalau Unoi migrated to New Zealand from Samoa as an adolescent, attending Kelston Girls in West Auckland before heading into nursing school when she was 19 years old.
She spent 25 years as a nurse before she made the switch to teaching. Unoi said his mum's love of serving people at church as a Sunday school teacher inspired her to make the move.
However, things took a turn when Unoi noticed his mother repeating questions every hour or so. He said his mother's condition progressively got worse when she retired from teaching and when the Covid pandemic had hit.
Recently, Unoi made the decision to leave his full-time role to focus solely on his mother, but while it does add another level of complexity, he said he won't trade any precious time with her for a career that would still be there when his mother dies.
He set up a Givealittle page to raise money for living costs and bills.
Unoi said discussions about who will care for relatives with dementia should be normalised within Pacific families, as it wasn't the case for him.
"It's almost like, I'd like to say, an inheritance," Unoi said.
"I inherited this role because of my place in my family, and because of my lifestyle and because of, again, my lifestyle choices.
"It needs to be normalised. Because to not have the discussion, and then to expect someone to deal with what they're dealing with and then have to add on, having to be a caregiver, and then all of the emotions, the roller coaster of emotions and the exhaustion; the list goes on."
Unoi noted that while there are support systems and resources for people with dementia, there's barely any help for caregivers particularly those in the Pacific community.
Sapini Unoi and his mother Mutalau have gained thousands of followers on their TikTok account. Photo: Marika Khabazi
The challenges of being a caregiver led to Unoi creating a Tiktok account as well as an online forum for other Pasifika caregivers.
He said he's been overwhelmed with the responses and messages on Tiktok.
"It's very surreal...although I'm very bubbly and out the gate and very outspoken, I'm still getting used to people stopping us and talking to us and noticing mum because she's the star of the show, you know, not me."
Unoi said reading the comments on their social media page pulls at his heartstrings.
"I'm crying in my quiet times because how touched I am at these messages," he said.
"I think what pops out the most and I think again, is the scary thing which should not be scary and should be challenged, is the amount of people that are doing it by themselves, no family or family present, and no family help."
For other Pacific families who are coping with dementia, Unoi stresses the importance of talanoa.
"Start to rally up as a family and start to talk about, 'what if?' What if this happens to our parents? Who is going to do it?
"Start normalising the conversations that need to be had, because they're vital."
