When Kimberly Williams-Paisley was falling in love, her mother was beginning to fall apart. The signs were small at first—forgetfulness and confusion—“yet in retrospect, things are clearer,” says Williams-Paisley, the actress best known for her lead role in “Father of the Bride”. “You write off these things,” she says. “I thought, maybe it’s a chemical change.” Williams-Paisley’s wedding to country music star Brad Paisley in 2003 was the first time she “noticed a tangible sign. We thought that maybe she was just nervous. It’s an emotional day.”

The coming years would prove difficult for Williams-Paisley, her two siblings, and her father, as they coped with Linda Williams’ continued decline and eventual diagnosis of primary progressive aphasia (PPA). “We made excuses, but after a while, it was undeniable,” says Williams-Paisley. An intelligent, funny, outgoing, and highly successful fundraising professional, Linda had eventually confronted her family herself. “She came to us and said she was having trouble. She was scared and she wanted reassurance.”

A neurological syndrome in which language capabilities become slowly and progressively impaired, PPA is caused by neurodegenerative diseases, such as Alzheimer’s disease or frontotemporal lobar degeneration, according to the National Aphasia Association (NAA). Although the first symptoms are problems with speech and language, other problems such as memory loss often occur later.

That would be the case for Linda as well. As the disease progressed, her husband Gurney Williams bore the brunt of her caregiving, aided by his children—Williams-Paisley, actress Ashley Williams, and firefighter Jay Williams. The three siblings, along with their father, collaborated and shared responsibility exceptionally well as Linda’s disease progressed—a time when many families quibble over decision-making. “I owe a lot of that to my sister,” says Williams-Paisley. “She’s a great communicator. She really demands it.”

Williams-Paisley recently wrote a book about her experience, “Where the Light Gets In: Losing My Mother Only to Find Her Again,” a nod to Leonard Cohen’s song “Anthem”. “Ring the bells that still can ring. Forget your perfect offering. There is a crack in everything. That’s how the light gets in,” the song goes. The book details the Williams family’s journey with honesty and candor, but also offers practical tips for families who may find themselves in similar circumstances. “I wanted to be open and honest and transparent,” she says. “I wanted to find a silver lining.”

Williams-Paisley recites a laundry list of things she wished she’d known when first faced with her mother’s illness. “We made many mistakes,” she says. “I wrote the book I wish I could’ve read before. There’s a stigma that surrounds dementia and we played into that.” Looking back, she says, “We would’ve paid better attention to Dad. Caregivers are at extreme risk and need a lot of support. He could sound convincing to us that he had it all covered, but would then kind of lose control of it. We had to convince him that he needed more help.”

Ultimately, the caregiving did become too much for Gurney. For some time, the Williams family knew Linda needed 24/7 care. She moved into a long-term care community that could offer specialized care and a secure environment. “Looking around, everyone was older and we wondered how she would ever fit in,” Williams-Paisley recalls. “But she was happier there. My mom was a people person. Now, she was no longer at home watching TV in the dark. They had a guitar player. They had activities. It was much harder on us, ultimately, than it was on her. The people who took care of my mom fell in love with her. I know they don’t have an easy job and I’m grateful for them,” especially when Linda moved into hospice care. “They were incredible,” says Williams-Paisley of the hospice caregivers. “They understood the complexity of our feelings, coaching us through the whole process and giving us space, and allowing us to be silent.” Linda Williams died in December 2016, just over a decade since she was diagnosed with PPA.

Writing the book was healing, says Williams-Paisley, who adds that she and her family had to learn to let go of the guilt and second-guessing. In the end, though, she says they likely wouldn’t change anything. “Forgive yourself and your loved one,” she advises others. “Write down your wishes before you get sick. Get your parents to write down their wishes. I wish she would’ve have written down, ‘I trust you guys.’”

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