July 26, 2017

Dementia, Mom, & Me: Joey's Journey

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Anger, check. Loneliness, check. Social isolation, check. Resentment, check. Fear, check. Loneliness, check (again). Exhaustion, too tired to check.

Pick a negative feeling and caregivers of loved ones with dementia go through it. In fact, the stress and emotional upheaval often leads to illness, and caregivers become "the second invisible patient," according to some researchers.

For me, the whole gamut of emotions surfaced during the 440 days I was taking care of Mom. Sometimes, all in one day.

The responsibilities are all-consuming, and I'm sure my friends got sick of daily updates about funny things Mom said, stupid things doctors did. More than once, people suggested finding a support group for caregivers. "Sure," I'd say. "Do they have them at midnight? 'Cuz that's when I have free time."

Enter Joey Daley, an angel from Ohio.

Enter his mother Molly, a beautiful, funny woman, and a victim of Lewy Body Dementia.

I can't recall how I stumbled upon his Facebook group, called Mother and Son's Journey with Dementia, but it's been a life saver for me and the over 35,000 members from across the country and the globe who've joined since Daley set up the page last January.

You can't just read about dementia and understand the magnitude of the illness and its impact on families and caregivers. Daley launched a weekly YouTube video series and since then, his videos have been viewed over 80 million times. The videos of everyday life with Molly went viral in the US, Germany, the Netherlands, Canada, UK, Taiwan, Australia, and many more countries.

The series prompted the creation of Molly's Movement, designed to promote awareness of dementia's impact and give back to caregivers. The grasshopper, like a brass figure Molly kept on her mantel, is the icon of the movement. Grasshoppers can only jump forward, and "we keep moving forward" is a statement Daley often uses to close his videos.

The short films depict Molly's life in an assisted living facility, her visits back home to Joey's house, and almost always end with trips to Wendy's for a Frosty. Rare are the shorts that don't elicit tears.

Sometimes Molly cries because she knows something's wrong and is scared.

Sometimes Joey cries because he feels helpless watching his mother's deterioration.

Over 40 media outlets have picked up the Daleys' story. Last week NBC completed a short documentary about the family. (Google "NBC" and "Joey Daley" to find the film). Daley posted it on the support group page on July 19. By Monday morning it had been shared over 4000 times.

Members of the group recall a scene from the doc: the day Molly couldn't remember who Joey was. It was the worst day of his life, the typically stoic Ohioan tells the camera, choking back a sob. It was a day scores of members of the Facebook group can relate to personally.

And for me, that's what the group was all about.

Finally I found people who can relate to what was happening with Mom. Fellow "grasshoppers," as we call each other, post questions – "Mom won't keep her clothes on, anyone else have that happen?" "Should I argue with Dad, or go along with his delusions?" – and find answers, tips, solutions, or best of all, empathy. Grasshoppers post photos with loved ones, share articles about dementia. They tell funny stories and toast Molly with Frostys purchased in her honor.

Over and over, posters thank Daley for creating a place to vent, and most of all find solace in sympathy and encouragement from fellow caregivers.

Daley started the series, he's said, because no one truly understands what it's like until they see the disease, the suffering on both sides – the patient and the caregiver – how it's robbing Molly's life, how it's robbing Joey's.

He wants to educate people and raise awareness. There are an estimated 50 million dementia sufferers in the world, a number that's expected to increase by an order of magnitude by 2030. The more people can learn about the devastating illnesses that cause dementia, the greater the likelihood of finding treatments, or even cures.

But for now, Molly and Joey continue to suffer. Sometimes he wonders whether he can go on with his mission of documenting his mother's deterioration. We encourage him and try to provide comfort, as he has done for over 35,000 strangers.

They're strangers, but they've also become my family. They know what I've gone through, they don't tire of hearing (reading) about it.

A famed author (though not so famed that I can call her name to mind right now) said loneliness is not so much a need for company, as a need for kind. Through Daley's mission, people around the globe learn about dementia, and those of us caring for loved ones find our kind.

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