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'My Journey with Al (Alzheimer's)': Dementia advocate now living with the disease himself

After years of trying to understand dementia, the disease now inhabits Dr. Charlie Farrell's own body.

WESTLAKE, Ohio — In the summer of 2019, a then-82-year-old Dr. Charlie Farrell braved the cold waters of the San Francisco Bay, swimming from Alcatraz with his life partner Luise Easton to raise awareness for Dementia. 

"Dementia can really turn into a prison in a person’s own life," Dr. Charlie told us back in 2019.

But, life with dementia doesn't have to be a prison. Since his wife Carolyn's passing in 2015, Farrell has dedicated his life to a foundation in her honor: Making sure families touched by memory loss get the hope and help they need, for free.

"When they first get this diagnosis, unfortunately they tend to panic, and they start to accept the concept that once you develop dementia, this is the end of your life. There's no place to go," he said of families dealing with dementia.

At the Carolyn L. Farrell Foundation, those families will always have somewhere to go. Now, after years of trying to understand dementia, the disease inhabits Charlie's own body.

"Over time, I've developed some short-term memory loss and after several months recently of testing, I do have dementia," he shared.

He's facing the diagnosis with courage and confidence.

"I'm not the only one in my age group," he said. "Ten percent of folks at age 65 have dementia. I'm 84, where 50% of people have dementia, so I can accept that.

"I cared for folks with dementia for approximately 20 years. I had the privilege of caring for my wife at home for approximately 15 years, and we found that our life at home turned out to be quite positive."

Charlie's advocacy and understanding of dementia has set the tone for his future.

"We're very confident about our care plan," he told us. "I mean, we've done this and have had the opportunity first in our own family, but I've now had the opportunity to be part of a care team through the foundation that's cared for well over 100 families over this time."

Credit: Farrell Foundation

And he'll get the kind of care the Farrell Foundation and his family promote: Strengthening independence, not taking away from it.

"I think with dementia care, the first thing people think of is that you're losing everything and family members see people unable to do things," Rev. Katie Norris, Charlie's daughter, said. "So they start to take away tasks from them, thinking that they'll help."

The sensitivity is everything to Katie, who is a dementia care specialist herself in Houston, Texas.

"Procedural memory, which is memory of how to do tasks -- especially like tying your shoes, cooking, getting dressed, all these things -- people start to actually take away from people with dementia [something] that actually lasts a really long time through the course of dementia," Norris explained. "It's just that there's a gap."

That's why Dr. Charlie is sharing his experience with others coping with memory loss. He's calling it "My Journey with Al," short for Alzheimer's, which falls under the umbrella of dementia. In one journal, he says documenting his journey will "allow him to maintain his dignity and lead a meaningful life full of joy."

There's one more thing: Dr. Charlie will do another swim this summer to raise more awareness with his beloved Luise. They'll finish the race, and this life, together.

"I just know that this is going to work," Luise told us of being Dr. Charlie's caretaker. "I have confidence. I'm not worried. I know he knows, and he's helping me learn how to work with this and I'm happy to do it."

"My family remains very supportive, and the foundation is extraordinarily supportive," Dr. Charlie said, "so I don't have any reason to believe that it ain't going to work."

To follow "My Journey with Al," click HERE. You can also watch our original piece on Farrell from 2019 in the player below:

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