Rye native Kimberly Williams-Paisley rediscovers her mother

Kimberly Williams-Paisley thought by the time her first book was published, her mother would be dead.

"I thought this story would end with Mom's death. She didn't die. In fact, she rallied," Williams-Paisley writes in "Where The Light Gets In: Losing My Mother Only To Find Her Again," (Crown Archteype). The book was released on April 5. The author will be at a free event at the Rye Reading Room, 8 p.m. April 6.

Her mother is Linda Williams, a vibrant, loving, fun and involved mother who raised three children in Rye. A former journalist and fundraiser with a big career at the Michael J. Fox Foundation, Williams was diagnosed with early onset dementia at age 62. And that's where this story begins for Williams-Paisley.

Her mother's struggles with a rare form of dementia — primary progressive aphasia, which affects both mental and physical abilities — crippled her capacity to talk, walk and eventually recognize her husband and her children. The family struggled, too, trying to understand how to best care for and love the person Linda Williams was becoming.

"For a long time, the most painful visits with her were the ones where I was holding onto the person she used to be; she had this ghost right next to her that she used to be, but I was left with this transformed person that I didn't know," says Williams-Paisley, back in her hometown for a book event.

A wife and mother herself — she's married to the country singer Brad Paisley — Williams-Paisley is also an actress, mostly famous with "Father Of The Bride," but also in the TV series "Nashville, "Two and A Half Men," and "The World According To Jim."

But the role she is most passionate about these days is advocating for dementia research and caregivers.

According to the Alzheimer's Association, (alz.org) by 2025 the number of people age 65 and older with Alzheimer's disease will reach more than 7 million in the U.S. Women in their 60's are about twice as likely to  develop Alzheimer's sometime in their lifetime as they are to get breast cancer. There are also 15.6 million people caring for someone with Alzheimer's and dementia, according to the association.

"It is a horrifying disease and I am doing what I can to raise awareness and hopefully find a cure one day," she says. "What I learned from my mother is to look for the silver lining; see who is in front of you. In some ways she has been really delightful, empathetic; she communicates on an emotional level and I have learned from her."

Williams-Paisley begins her story in the back of the family car. Her mother is driving along snow-covered streets in Bronxville, where the Williams family lived at the time. With her mom at the wheel, their station wagon began to skid and 8-year-old Kim envisions them slipping down a set of steep steps at the end of the street, Howe Place, and plunging over a hillside. In a panic, her mother starts muttering, "S--t in a bucket" but manages to spin the wheel and deliver them safely into their own driveway.

"For one of the first times in my life," Williams-Paisley writes, "my mom had become someone else right before my eyes. I was both startled and intrigued. Who was this mother of mine?"

That's the central theme of the book. Who is this mother of mine?

As Williams-Paisley says, the relationship between mothers and daughters, even in the best of times, can be fraught with obstacles, tears and pain. As she grew up and away from her family, relocating to L.A. for an acting career, then marrying, she attributed some of her mother's odd behavior to distance and growing older.

Yet it quickly became apparent to Williams-Paisley and her siblings, Ashley and Jay, that something wasn't right. Their mother had started to act erratically, suffered raging angers and forgot how to do simple tasks such as write a check at the grocery store. She had a car accident she didn't remember, and neighbors often found her wandering. "She's on the move," they'd tell her husband, Gurney Williams.

Like many families struggling with dementia and Alzheimer's, Williams-Paisley say they wrestled with secrecy — "once her diagnosis came, my mother absolutely did not want anyone to know" — a reluctance to ask for outside help and bowed to their father insistence that he could care for his wife without help.

"My mom was very adamant about keeping her diagnosis quiet, and friends have said, 'if you were in the same situation, wouldn't you have done the same thing?'," Williams-Paisley says. "If I could do it again, I think I would try to push her a little harder and talked about it earlier and gotten help earlier and not worried so much about the way she wanted things to be.

"While it was happening, on the hardest days, we all said, 'Write it down and we'll put it in the book.' That was our saving grace, one day this will be a story. One day we can share with other people."

When she told her siblings and father, himself a journalist, that she was going to write the book? "My family's response was 'wow,'" she says with a laugh. "It is a very vulnerable place to be and its a very personal book; they're all in it. But I couldn't have done it without them."

The book has been described as brave and sad. Heartbreaking, generous and human, but mostly,  Williams-Paisley says, it was hard.

"Every chapter felt like a new mountain to climb, but I was familiar with that feeling," she says. "It was, 'I don't know how I am going to do this!' But I learned not to panic, to get up and go for a walk. I'd say, Nah, this isn't good yet, and then it would come around and I would be happy at the end. That's something else I learned from this experience: becoming comfortable with what's uncomfortable. I learned that from my mother. "

The title,  "Where The Light Gets In," is part of a lyric from Leonard Cohen's "Anthem" which goes: "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 lyrics became my anthem," Williams-Paisley says. "I wanted to take the reins of the story and turn it around and not let it be a tragedy but make it a hopeful story. The lessons are we can become stronger and better people."

As a mother herself, she says "I think I am stronger; I am definitely become comfortable with what's uncomfortable  and forgiving myself mistakes when I make them. And I think of my mom when I do things with my own kids, what adventures can we get into?"

Now when she visits her mother, who lives in an assisted living community in Westchester, she no longer wonders, "who is this mother of mine?"

"I had friends who had established great relationships with their parents who suffered with dementia and yet were able to find transcendent moments," she says. "I was missing that moment with Mom. I wouldn't let her be the person she would become. I wanted to have the person I knew. One day, it was like a miracle, I understood this. I looked at her as she was instead of embracing the the beauty of what she used to be."

Dementia Resources

Kimberly Williams-Paisley's book, "Where The Light Gets In" includes a resource section with tips, advice, and places to find information and help. She shared some of what she learned through her own mother's struggles:

AWARENESS: "The question of awareness comes up again and again: Does mom know who we are, does she know we're here?  With awareness, it's different from day to day. Sometimes there is a connection, or it's my interpretation of awareness; we will never know."

GUILT: There is so much guilt around this disease and caregivers. There is that feeling of, we should have done this and this... we made so so many mistakes and regrets, but one of the lessons she has taught me, is to let go of guilt. I am doing the best I can and I learned to forgive myself the guilt I feel on a good day. I always say, that's the silver lining.

THE POWER OF MUSIC: 'I did find music to be very helpful, but it depends on the individual patient and where the person is. For my mother, music in general is great for breaking her out of a bad mood or distracting her. In his movie, "Alive Inside,"Dan Cohen talks about getting a specific playlist for a person; what did they like before they got sick? And his movie is amazing, awesome, by the way. We discovered if she would communicate with a groan or a wail or a sound or a song, we imitated that sound, and we would be able to connect with her. it was like I was saying to her, 'I hear you.'"

BE PROACTIVE: Ask for help early and often; I would encourage that. I think we might have gotten better resources early on. Once I did start talking about it, I felt better.  We also could have gotten better support for my dad.

DON'T LET DAD TAKE CARE OF ME: Make your wishes known, and get it done early — everyone should do this — and make it clear what would you do in that situation. That would have been helpful for us. My mother had a conversation with my sister and said, 'I don't ever want Daddy to care for me.'  She only shared that wish with my sister, and it tortured us later because we didn't know what it meant. My sister felt a big burden, and she (my mother) was never specific and by the time we could bring it up with her, she felt differently. It was a vicious cycle. Write it down; it can be simple, I trust you and if I am cognitively impaired, I trust you to make the right decision. It's a very hard thing.

TAKE CARE OF THE CAREGIVER: It is like the frog in the boiling water. My dad said "I can do it," but then you see him and he is getting thinner, he is getting grayer, and he is emotionally disengaged from us. Pay attention to the caregivers. There are 15.6 million people caring for someone with Alzheimer's and dementia; some of them are doing it long distance and it's really hard to keep an eye on them. And it's expensive. I tell people about the Alzheimer's Association 24 hour toll-free hotline that connects caregivers to support. That is something that he didn't do.