More than seven million Americans are living with dementia- that's one out of every ten.
And now, I've shared that my dad is one of those people.
I was inspired to share my own family's story by a local woman named Diane Chew. She is creating a community of caregivers by posting social media videos of her and her husband, Ben, and by offering caregiving hacks, a healthy dose of humor, and hope.
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Diane tells me she used to be anti-social media, saying "Facebook is wastebook." But now, this former life coach is making an incredible impact as @DementiaCoachDiane.
Diane's husband, Ben, now 72, was diagnosed with dementia after years of confusion and chaos.
"It was a nightmare. I didn't know what to do," says Diane.
A series of incidents in 2022 ended with a breaking point that December.
"I had to call the police because he was beating me because he didn't recognize me," she says.
Weeks later, Ben ended up in the ER after a fall. A neurologist there finally diagnosed him with Lewy body dementia, a common type of dementia, characterized by the abnormal buildup of proteins called Lewy bodies in the brain.
"When they talk about the rollercoaster ride of emotions, it's such an understatement," says Diane.
But today, Diane holds both grief and gratitude, saying she has learned our hearts are big enough for both. She says while Ben's condition continues to evolve, he at least recognizes her once again as the love of his life.
They have been married for more than 40 years now.
"I was just like, oh my gosh, we still have our relationship, we still have our love... We have something to share," she says.
So Diane is sharing their journey on Tiktok, Facebook, and Instagram, documenting every day life with Ben for 165,000+ followers.
Some posts are serious, while others are meant to make you smile, even laugh. And every post offers hope to others.
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"I want to change the paradigm of the stressed out caregiver to one who can actually feel proud of themselves, celebrate the sacred work that we're doing," she says.
She also provides great tips and tricks to caregiving for loved ones with dementia. For instance, one post shows caregivers how to create a fiddle box to keep hands and minds busy. Another shows how adaptive clothing, like a jacket with buttons, makes getting dressed easier.
Diane says, in return, she and Ben "have been deluged with love."
The social connections are spreading from social media platform to paper.
"I put up a sign and I said, 'Would you please send Ben a card?' The response was overwhelming," she says.
Diane and Ben received cards from all over the world, including Finland, Australia, and South Africa.
"I come down, and I just read these sometimes in the middle of the night. They say things like, 'Sending you positive energy. A big hug from the opposite side of the country, the Pacific Northwest.'," she says.
So while Diane started on social to serve others, she is also finding comfort in the community of caregivers she's created in the process.
"Isolation is one of the hardest things. It's really lonely and yet, I'm not alone, and I know that now," she says.
Along with her social media accounts, Diane has a newsletter for caregivers. To sign up, CLICK HERE.
On July 1st, there will be a special screening about a documentary called Facing the Wind.
It is a film about Lewy body dementia and a group of women caregivers who rallied to support each other across the country.
I talked to one of those women, Linda Szypula, and she asked me to share the Lewy Body Resource Center's 24 hour hotline. It's 833-LBD-LINE (833.523.5463).
She says it's the only live hotline for those with LBD and caregivers for any kind of dementia can call it for help.