An Interview with Kimberly Williams-Paisley: Where the Light Gets In

Kimberly Williams-Paisley reveals both the struggles and the lessons learned from her mother’s dementia.

CHRISTMAS 2005. Kimberly Williams-Paisley, her husband, sister, brother and in-laws were sitting together on a single bed in her parent’s house. They had gathered to hear some bad news.

At the age of 62, Kimberly’s mother, Linda, had been diagnosed with primary progressive aphasia (PPA), a form of dementia with no treatment or cure. In five to seven years, she would need full-time care. My Hometown Health recently spoke to the star of the ABC TV series “Nashville,” whose new book, Where The Light Gets In: Losing My Mother Only To Find Her Again, candidly shares both the difficulties and the joys her family has experienced during the past 12 years.

What inspired you to write the book?

Dementia is a tough subject and a heartbreaking story for any family. I wanted to find the silver lining and help others facing the same situation. In 2014 I wrote an article for “Redbook” about my mother. It was very well received and very liberating for me personally. For many years, our family had kept our mother’s condition a secret, in part because of her wishes. I found that telling Mom’s story and sharing the lessons our family had learned was very gratifying.

Can you share a specific example of a lesson your family has learned?
Well, as I said, Mom never wanted to talk about her condition. So we never really had an opportunity to discuss and understand her wishes once she reached the point where she couldn’t care for herself. I wish now we had pushed a little more to know what she wanted. It would have been so helpful. Instead, because we didn’t have any written instructions, we were left trying to figure out what her best self would have said.

What are you hoping that the book will accomplish?
I hope this book will help raise awareness about dementia and start to remove the stigma that still surrounds the disease. Dementia needs a publicity makeover; it needs to come out of the shadows the way we’ve done with breast cancer, for example.

It wasn’t that long ago when the subject of cancer was taboo. People only whispered about it. Now you have NFL players and rodeo riders wearing pink to raise awareness. We need that same kind of openness and honesty about dementia. I’m also proud to say that part of the proceeds from the book are being donated to the research being conducted on Alzheimer’s, the most common form of dementia.

How much research funding does the study of Alzheimer’s receive?

Not enough. Alzheimer’s is the sixth leading cause of death in the United States. Yet unlike heart disease, cancer or any of the other Top 10 causes of death, there is no treatment and no cure for the disease. It costs $214 billion every year to treat Alzheimer’s, yet research funding is only about $566 million annually. That needs to change, especially when you compare that $566 million to the $5.4 billion the federal government commits to cancer research each year.

When did you first suspect something was wrong with your mother?

Looking back, I think it was when Brad (Paisley) and I married in March 2003. Mom was not a fan of Brad when he and I first met. He didn’t fit the mold Mom was expecting because he wasn’t like my Dad. I could understand that at first. But her reaction to our engagement was really over the top. I think now the disease was first starting to show itself then.

Tell us a little bit about your mother.
Before the disease, my mother was a very talented and giving person. She was a journalist and then worked as a fundraiser for Sarah Lawrence College, Sloan Kettering and the Michael J. Fox Foundation. She was really good at her job because she had no problem asking people for money. To her, requesting a donation, even for millions of dollars, wasn’t about pleading or begging. It was about giving that person an opportunity to feel good about doing good. As a mother, she instilled in her children the desire to help others and change the world. I hope this book honors what she taught us so well.

How is your Mom feeling these days?

She’s still teaching me every day. Thanks to her, I’m learning to live more in the present. I’ve slowly been able to hold onto the memory of my mother and still embrace who she is right now. By accepting her just the way she is each day, you could say I’ve found her again. And that truly is a wonderful blessing.