Walk to End Alzheimer’s about community

Penny Baggett took a selfie every time, hoping it might make her dad remember.

She took them with her father, Don Taggart, and liked to do so in front of a John Wayne cutout at her father’s memory care community.

Taggart had Alzheimer’s disease and Lewy Body Dementia, which prompts changes in thinking, movement, behavior and mood. He still remembered Baggett well, but would always ask her why she wasn’t coming to see him, even though she visited two to three times a week.

The selfies were a way to show him that she had stopped by, that she was remembering him.

“You don’t know what to do. You just try to do the best that you can,” Baggett, 59, said of handling Alzheimer’s and dementia.

The selfies concluded on Nov. 5, 2016, when Taggart died at age 84 from kidney failure. His death brought closure to a seven-year fight that was confusing, frustrating and sad for Baggett and her family, especially her mother, Barbara, whom Baggett said is her hero and Taggart’s main caretaker.

Baggett will participate in Vancouver’s inaugural Walk to End Alzheimer’s, which begins with registration at 10 a.m. Sunday before the walk starts at 11 a.m. The walk has already raised more than $80,000, doubling its initial goal. Baggett will walk with “Team Forget Me Not,” which has raised more than $10,000.

Baggett has already participated in two previous walks in Portland. The first time she walked, she cried throughout because of how happy she was to have found a community that felt like she did.

“It was tears of realizing I wasn’t alone anymore. There were thousands of people there that were going through the same thing I was going through,” she explained. “I didn’t know there were so many people who had this disease. I didn’t know there were so many resources out there for me.”

Initially, Baggett and her family attributed Taggart’s symptoms to a mild stroke he experienced. Taggart wouldn’t visit doctors, because his diseases made him think they weren’t trustworthy, so there was no official diagnosis until his brain was donated to the OHSU Brain Bank, which diagnosed him with Alzheimer’s and Lewy Body.

But with the help of Oregon Health & Science University doctor Randall Woltjer, Baggett was able to conclude that it was likely her father had Lewy Body a little bit before he died.

That meant Baggett could contact the Alzheimer’s Association, and take advantage of their free resources. The 24/7 helpline was especially helpful to Baggett, whose mind wandered with questions such as, How am I supposed to feel with my dad this way? How do I deal with this? How do I handle him not knowing my mom, but he’s looking for her all the time?

She watched as Lewy Body “robbed” Taggart of the man he was. The fun political debates they would get into were replaced by his irritability. The man who was a veteran of the U.S. Air Force, and took Baggett clam-digging and camping and crabbing and fishing in the ocean growing up, and coached her brother’s youth baseball team transformed fully.

Taggart thought there was a revolution going on, that people were going to kill him. He had nighttime hallucinations and thought his wife was feeding animals. Baggett could tell that her father was not happy, and debated the ethics of whether she should tell him about the diseases he had.

That’s a question she posed to the hotline. They responded that what she was doing was called “therapeutic lying,” where you deceive someone because it’s in their best interest. That explanation brought Baggett comfort.

“Awareness is huge in this disease,” Baggett said. “There is no treatment, but you can get a diagnosis and some help.”

When Baggett walks Sunday, she’ll be doing the walk for two people: her father and herself. Through a 23andMe DNA test, Baggett found out she has the Alzheimer’s gene. She took the test for other reasons, unaware that it tracked Alzheimer’s, and was initially saddened by finding that out.

She said she doesn’t want to forget loved ones, be a burden to family or be constantly scared, but she now understands that she shouldn’t dwell on things outside of her control. She plans to handle that Sunday by putting one foot in front of the other.

“I will walk until I can’t walk anymore for this group,” Baggett said. “I have helped a lot of people that are dealing with it that didn’t know how to deal with it.”