Everyone forgets a word now and then, quickly flipping through the mind’s mental Rolodex of vocabulary only to come up empty. But for actress Kimberly Williams-Paisley’s mom, her struggle to find the right word in conversation was worrying her — and it was happening frequently.
In 2006, her 62-year-old mother got a diagnosis: a frontal temporal lobe disorder called primary progressive aphasia — a rare neurological syndrome that affects one’s ability to communicate, according to the Mayo Clinic. The condition eventually leaves people unable to speak, write, or read.
“We didn’t know it was officially Alzheimer’s until after she passed away,” Williams-Paisley shares with Yahoo Lifestyle. “There’s no way to definitively diagnose Alzheimer’s until after death.”
But at the time of the initial diagnosis, Williams-Paisley says, “It was heartbreaking.” She adds: “I was pregnant, and I was devastated that she wasn’t going to know my kids. I figured I’d probably, hopefully, have more than one, and I knew that she wouldn’t be in their lives the way she’d been in mine.”
The actress, 47, who is best known for her role in the 1991 Father of the Bride movie with Steve Martin and is starring in Darrow & Darrow: Body of Evidence, premiering Oct. 14 (9 p.m. ET/PT) on Hallmark Movies & Mysteries, describes her once-vibrant mother as a “real go-getter.”
“If there was an ocean, she was in the ocean,” she says. “It didn’t matter if it was cold — she would jump in. That, to me, encapsulates my mother’s spirit.”
However, along with her mother’s diagnosis came feelings of shame. Williams-Paisley, who is married to country star Brad Paisley, says her mom was “very embarrassed” about her condition. “She insisted that we keep it a secret. She just kept saying, ‘If I could only just, if I just focus a little bit more, I can do it.’”
There came a point when her mom could no longer be taken care of at home and had to be moved to a long-term care facility. “She was increasingly aggressive and even violent, unable to speak, unable to take care of herself in any way,” Williams-Paisley says.
Seeing her mom in long-term care and watching her personality slowly slip away was painful for Williams-Paisley. “It tortured me when I went to see her there because I just kept thinking of who she used to be,” she recalls. “And that felt like a ghost.”
Williams-Paisley eventually decided to put the “ghost” aside and accept who her mom was at that point. She looked for glimmers of light, noticing that her mom still loved music and lit up whenever someone walked into the room. “She still had that exuberance,” she says.
Her mom died in 2016, and Williams-Paisley says it was “gut-wrenching.”
Before her mother’s death, Williams-Paisley wrote about the journey with her mom and the stigma of Alzheimer’s in the book Where the Light Gets In to help others dealing with the effects of dementia.
She continues to honor her mother’s legacy by raising money for the Alzheimer’s Association to help fund research, as well as by raising awareness about the devastating disease, which affects nearly 50 million people around the globe.
“In her healthy mind, I think she would have been so happy and proud,” Williams-Paisley says about her efforts. “And that’s the mom I want to remember, more than anything.”