Kimberly Williams-Paisley Says Her Mother’s Battle With Alzheimer’s Disease Taught Her to Say ‘Yes’ to Life
(ROBERT TRACHTENBURG/ALZHEIMER’S ASSOCIATION)
Kimberly Williams-Paisley is “busy, busy, busy, ” she says on her one day off in Vancouver. But make no mistake: “Thhttps://parade.com/900312/amyspencer/kimberly-williams-paisley-caregiver-alzheimers/e busy-ness is by choice,” says the actress, 47, who lives in Nashville with her husband of 16 years, Brad Paisley, 46, and their sons, Huck, 12, and Jasper, 10. While juggling family life, she’s acting, producing and working with numerous charitable associations, including the Alzheimer’s Association, to which she’ll always have a deeply personal connection.
Williams-Paisley was raised in Westchester, New York, by her mother, Linda, a fundraiser whose last job was at the Michael J. Fox Foundation for Parkinson’s Research, and her father, Gurney, a writer. Growing up, she did ballet and played with her two younger siblings, brother Jay, now a firefighter and beekeeper, and sister Ashley, an actress. They were a tight-knit family, full of traditions led by their cheerleader of a mom. During summers, they’d visit their grandmother on Cape Cod. In the fall, they’d go apple picking. At Christmas, they’d read “’Twas the Night Before Christmas” aloud before bed. Then, at 19, Williams-Paisley was cast in her first film, Father of the Bride (1991), which changed her life for good.
It jump-started her acting career—fast. She’ll never forget her first day on set, when her onscreen dad, Steve Martin, suggested she get a therapist. “I was like ha ha ha—but I should have,” says Williams-Paisley, who stepped from literal obscurity into the spotlight. “There was so much pressure. I used to have the worst stomachaches.”
And that first movie role led her to the love of her life.
Country singer-songwriter and guitarist Paisley saw his future wife in Father of the Bride and was so determined to meet her, he cast her in a video for “I’m Gonna Miss Her.” He wooed her by taking her to dinner in Marina del Rey, California, followed by a walk on the pier and months of emails and phone calls as they kept in touch long-distance. “He made me laugh. That was huge,” she says. He sealed the deal when he played “Little Moments,” a song he wrote about her, proving “he understands me in a way that I didn’t even realize.” They were married in 2003.
Brad Paisley helps his wife’s cause by performing at Kimberly Williams-Paisley’s annual all-star ’80s Dance Party to End ALZ in Nashville. (This year’s party is September 29. Visit alz.org/danceparty for more info.)
A Growing Shadow
But as her life was expanding with joy, a shadow was growing over her mother’s health. It was at her wedding to Paisley that she first noticed something was wrong. Her mother seemed irrationally upset about the ceremony and had trouble reading a Bible passage. “She was very smart [and] articulate,” says Williams-Paisley, “but that day, she had to keep stopping herself and going back.” Trouble finding the right words was followed by other daily issues, like her mother having a problem signing a check at the grocery store, or difficulty tallying up a tip.
At first, the family wrote it off to fatigue or stress. When they shared their concerns, Linda would accuse them of badgering. “It was walking on eggshells,” says Williams-Paisley, who chronicled the experience in her 2016 book, Where the Light Gets In. The family backed off and let it go—until they no longer could.
One day, she says, “I got a call that my mom had a terrible accident and had to be helicoptered to Mass General in Boston. They were biking and she probably forgot how to ride a bike.” There was another close call, she says, when her mom “had confused the gas pedal with the brake in the car in the parking lot at Costco and barreled down an aisle and impaled her car on top of a little wall.”
Soon after that, Williams-Paisley’s mother was diagnosed with primary progressive aphasia, a degenerative brain disease they later found out was caused by Alzheimer’s. Looking back, Williams-Paisley regrets their first instincts to try to keep her mother’s struggles hidden.
“We really let the stigma take control,” she says, “like it was her fault, or that it meant she wasn’t smart.” It not only inhibited them from reaching out for advice and support—it also prevented their father from getting the kind of support he really needed. “My dad wanted to be Superman and take care of her as he always did,” she says. But he said later that “he was the frog in boiling water, that he had no idea the danger he was in.” In many ways, Williams-Paisley says, caregivers are at a greater risk than the patient they’re caring for. Her father eventually had a heart-attack scare and became “like a shell of his former self,” so they finally made the difficult choice to enter their mother into long-term care—one of the hardest moments in the course of her mom’s disease.
(COURTESY KIMBERLY WILLIAMS-PAISLEY)
Embrace the Blessings
After her mother entered care in 2012, Williams-Paisley noticed something troubling: “I started speaking about her in the past tense,” she says. “She was like a ghost of the person that brought me up, and then there was this new person that looked different, acted different and, you know, is not my mom. It hurt too much to talk about her in the present.”
But one night, after talking with a friend (artist Elizabeth Shatner, wife of Star Trek actor William Shatner) who’d also had a parent with Alzheimer’s, “I realized that I was missing an opportunity to get to know this new person,” she says.
She got on a plane the next day to visit her mother. “It was a great lesson for me in embracing the person in front of me and being strictly in the moment—which, I realized, she was.” Williams-Paisley learned how she’d enter the room and her mother’s face would light up; and when she’d leave the room and come back five minutes later, her mother’s face would light up again. And though the relationship her mother had with Williams-Paisley’s first child wasn’t what she’d hoped, it had its own joy, full of in-the-moment experiences, “happy with little things like sitting on the floor, laughing hysterically over something.” She erased the ghost of who her mother was and asked, “Who are you now?”
“I realized she was still my teacher in so many ways,” she says. “It’s a horrible disease, but to be able to embrace the blessings within it was a gift.”
Linda Williams passed away in 2016 at age 73, and Williams-Paisley is living the fullest life she can in her memory. She’ll next appear in the upcoming Netflix series Dolly Parton’s Heartstrings and will begin filming The Christmas Chronicles 2, also for Netflix—another in a line of Christmas films she’s done. (She says she loves the holiday so much, “I don’t mind having Christmas for half of the year!”) She and Paisley plan to open the Store in Nashville by early 2020—it’ll be a service, set up like a free grocery store, for people who are trying to get back on their feet after a setback. When she can, she fits in her favorite workouts, like hot yoga, spinning and Zumba, and takes walks while listening to a book—most recently, it’s Melinda Gates’ The Moment of Lift. She’s also building a little “she shack” at her home.
And to this day, the actress lives a lesson her mother taught her by being present with her family every moment she can. They have drawing contests; she and son Jasper will challenge Brad Paisley and Huck to a five-minute contest, “like, it has to incorporate an elephant and a tree, and take place in another country, or something like that.” They read books out loud, having just finished Lois Lowry’s The Giver. And they play ball in the dodgeball court they built from an old garage. “Anyone who comes to visit, it’s like a rite of passage—you have to go hit the dodgeball court!”
And when the next opportunity lands on their doorstep to do something else fun, chances are the Paisley family will take it—just as her energetic, cheerleading mom would have her clan do. “We say yes to as much as we can,” she says.
What I Learned
Talk about it.
“If you have a family member with any form of dementia or memory loss,” Kimberly Williams-Paisley says, “tell people about it. Ask for help. Call the Alzheimer’s Association. They have a 24-hour caregiver hotline that is free.” (800) 272-3900
“So many caregivers and family members feel so much guilt about everything,” she says, from “I’m not doing a good enough job” to “I did this wrong” to how her family felt the burden lift when her mom went into care. “There’s no graceful way through it, really,” she says. “It’s a very complicated illness.”
Stand your ground.
If a family member suffering from dementia tries talking you out of doing what’s right, use your resources. “The Alzheimer’s Association has a full page of ideas about how to get the car keys away from someone who shouldn’t be driving—like getting a prescription from the doctor to have a driving test.”
Write down your wishes.
Even if you’re not dealing with dementia, she says, “write down now, while you’re healthy, what would you like for your care, if one day you can’t take care of yourself. Or, if nothing else, tell your loved ones that you trust them to take care of you in a way that they see fit.”
Categorised in: Dementia