In 2005, Williams-Paisley’s mother, Linda Williams, was diagnosed with primary progressive aphasia (PPA), a rare and incurable form of early-onset dementia. Williams died November 16, 2016, and an autopsy concluded the PPA was caused by Alzheimer’s.
Letting light in
“My mother is not her disease,” Williams-Paisley wrote in her memoir, “Where the Light Gets In: Losing My Mother Only to Find Her Again,”
“Alzheimer’s takes a person away, bit by bit, over time,” she said. “You can sort of forget who they were before.”
Williams, who was 62 when she was diagnosed, was married with three children. (Williams-Paisley is the oldest.) The actress’s mother was first a journalist and then a successful fundraiser, including being a major gifts fundraiser for The Michael J. Fox Foundation.
Williams’ PPA slowed her down significantly. She became moody, accident-prone and struggled to do seemingly everyday things, including eating and recognizing family.
From time to time, the family would see glimpses of the woman Williams once was, whether through a joke, a curse word or even in her final days when her husband, Gurney Williams, mentioned, “Kim’s coming to visit” and her eyes popped open.
“I stopped trying to look [for those moments], because it’s painful when I didn’t see them,” said Williams-Paisley. “But when they did come, it was a fun surprise.”
Celebrate the present
The star of the “Father of the Bride” movies encourages caregivers to “celebrate being in the present.”
“Let go of all expectation and love them as they were,” said Williams-Paisley. She tries to continue that mindset, celebrating the present with husband country singer Brad Paisley and their children.
“Alzheimer’s affects the whole family,” said Williams-Paisley, whose father was the primary caregiver, along with her, her brother and her sister.
“It’s just exhausting because of the 24/7 caregiving needs of the patient,” she said.
An advocate with the Alzheimer’s Association, the actress encourages caregivers to reach out for support. And not to hide behind the stigma.“Looking back, we wish we shared the diagnosis sooner,” she said, explaining they could have gotten better advice, including how to stop her mother from driving. “She drove a lot longer than she should have.”
The Williams family waited a long time before moving their mother to long-term dementia care. “We felt so guilty,” said Williams-Paisley, who regrets her mother didn’t write down her wishes early on.
“I wish we’d gotten a map from her,” she said. “If nothing else, I wish she’d just written down, ‘I trust you and I love you and I know you’ll make the best choice that you need to.’”
While her mother’s disease isn’t hereditary, Williams-Paisley knows the statistics: One in six women in their 60’s will develop Alzheimer’s.
She’s living a healthy life and encourages others to do so as well.
“If you’re exercising your heart, you’re exercising your brain because it helps blood flow to the brain.”
Williams-Paisley is doing a lot of Alzheimer’s fundraising, including a disco fundraiser last year and an upcoming ’80s-themed benefit. She’s still acting too, including Hallmark Channel’s “Darrow & Darrow” and “The Christmas Train.”