If you want to understand dementia better, there are daily moments in Molly Daley’s life that can help.
You can watch her dial up her son, Joe Daley, on the phone and hear him answer just a few feet away. She talks briefly before becoming puzzled when he asks if anyone’s in the room with her.
You can witness her break down over a series of all-too-real nightmares caused by Lewy Body Dementia.
You can see her smile and laugh as the 66-year-old woman tries to recall stories of her glory days in Lima.
You can view these things yourself on YouTube, “Mother and Son’s Journey with Dementia,” at http://bit.ly/2jq7wSE, because Joe Daley decided to share his moments with his mother. The series, with four videos so far, started a week ago and have more than 14,000 views and a healthy Reddit.com discussion.
“After talking with friends and family, I realized you can’t explain dementia and the suffering that people go through,” said Joe Daley, a 1990 Lima Central Catholic graduate now working in Columbus.
Seeing it, you can’t help but understand the pain for both her family and Molly Daley herself.
“It’s going to be like this forever,” she said in the third video, crying. “What kind of life is that?”
She quit her job at the Verizon store after the effects from Lewy Body Dementia made it harder for her to keep up with the advancements on new phones. Five years ago, she moved to Columbus to be closer to her children, and she now lives in a nursing home they call her apartment to comfort her.
Joe Daley said his mother was the life of the party, an independent woman with a busy social life. Now she waits for daily visits from her children, often forgetting they even happen.
“Write down everything you can do on a chalkboard,” Joe Daley said, describing his mother’s illness. “Then slowly erase those things as time goes on until you can’t do anything anymore.”
His goal is to both educate and learn.
In the most recent episode, she complains about a door in her bathroom that she can’t open to leave. It turns out to be a shower curtain with a pattern. He learned from comments on his videos that plain shower curtains and carpets work best for people with dementia.
Some days, he still sees his mother fighting through the disease.
“There are certain times she’ll finish a complete sentence,” he says. “Most of the time, I can understand her or figure out what she’s talking about. … You can’t keep saying, ‘What? What do you mean?’ You want to make them feel as normal as possible. I try to go with it.”
In the second video in the series, Molly Daley, the granddaughter of former Huddle restaurant founder David McClain, seems cheerful as she listens to friends share stories.
It was a bit much for Joe, who broke down crying in the car in one of the videos.
“I don’t like her to see me cry,” he said. “It upsets her. I do everything I can to hold it back. When we went to Lima, I did break down in the car. It was a tough one. I just remember her as being so healthy when she was in Lima.”
He recommended finding a designated place to cry for a little bit each week, so you can put a brave face on before working with your loved one. He hopes to share more tips to show people dealing with dementia what to expect and remind them they’re not alone.
“I’m willing to sacrifice my vulnerabilities and weaknesses to the world to make a difference,” he said. “Dementia is much bigger than I am.”
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