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 suc- cessful 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 Alz- heimer’s disease or frontotemporal lobar degeneration, according to the National Aphasia Association (NAA). Although the fi rst symptoms are problems with speech and language, other problems such as mem- ory loss often occur later. That would be the case for Linda as
well. As the disease progressed, her hus- band Gurney Williams bore the brunt of her caregiving, aided by his children—
orget your perfect off ering. 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 fi nd themselves in similar circumstances. “I wanted to be open and honest and trans- parent,” she says. “I wanted to fi nd a silver lining.” Williams-Paisley recites a laun-
dry list of things she wished she’d known when fi rst 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
“I wrote the book I wish I could’ve read before. There’s a stigma that surrounds dementia and we played into that,” says Williams-Paisley.
Williams-Paisley, actress Ashley Williams, and fi refi ghter ay Williams. The three sib- lings, along with their father, collaborated and shared responsibility exceptionally well as Linda’s disease progressed—a time when many families quibble over decision-mak- ing. “I owe a lot of that to my sister,” says Williams-Paisley. “She’s a great communi- cator. 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.
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 com- munity that could off er specialized care and a secure environment. “Looking around, ev- eryone was older and we wondered how she would ever fi t 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 De- cember 2016, just over a decade since she was diagnosed with PPA. Writing the book was healing, says Wil-
liams-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 be- fore 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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