“Where the Light Gets In: Losing My Mother Only to Find Her Again” Kimberly Williams-Paisley’s Book on Dementia

Actress, wife, mother, and daughter Kimberly Williams-Paisley shares her story about her mother’s dementia and learning to enjoy the journey

When a loved one is diagnosed with Alzheimer’s or dementia, dealing with the news can be difficult for the entire family. Many adult children struggle with how dementia changes their parents’ personality, behavior, mood, and activity levels. It can be a lonely and daunting experience to grieve the slow decline of loved ones. Although it may seem like it, you are not alone in these emotional struggles and challenges.

Kimberly Williams-Paisley is well-known for her role as Annie Banks, the bride in the popular Steve Martin remakes of the Father of the Brides movies. Kim has also appeared on television shows and is married to country music singer Brad Paisley. Behind the scenes of this celebrity lifestyle, Kim was dealing with her mother Linda’s dementia diagnosis. Linda suffered from a rare form of dementia called Primary Progressive Aphasia, a rare and aggressive dementia that slowly damages the parts of the brain that control speech and language. [Source]

Kim first shared her story with Redbook Magazine in 2014. In this article, “How I Faced My Mother’s Dementia,” Kim talks about how after her mother’s diagnosis, her family tried to act as though nothing at changed. She talks about her mother Linda, who at age 61 was diagnosed with PPA, faced a variety of symptoms. Kim wrote, “We started covering for my mom’s condition everywhere we went with her—even Starbucks, where, at the head of the line, Mom said, “Let’s get nachos!” We faked laughter at her “joke.”

“Almost every time we had dinner together, a glass broke or a plate of food wound up on the floor. She ate spaghetti with her fingers. She had accidents and falls that landed her in the ER. In conversations, we worked subtly to help Mom find words or finish sentences, trying to shield her from her own struggle. It was scary and exhausting.” [Source]

“Where the Light Gets In: Losing My Mother Only to Find Her Again”

In 2016, Kim wrote a book telling the whole story of her mother’s illness. As the main author, Kim would write a chapter and then send it to her father for feedback. Kim draws a candid picture of the ways her family reacted for better and worse, and how she, her father and two siblings educated themselves, tried to let go of shame and secrecy, made mistakes, and found unexpected humor and grace in the midst of suffering.

When talking about Alzheimer’s and her own experience with dementia in an interview with Read It Forward, Kim said:

“I think the nature of the disease makes it really difficult for people who suffer from it to speak out because their behavior is changing. For instance, my mother had trouble speaking, so it’s hard to find a spokesperson that can be the face of dementia and represent it well.

“That is part of it. And then there’s the irrationality and paranoia that often comes along with the disease. I think my mom was embarrassed and didn’t want people to think she wasn’t smart. She didn’t want pity. Part of it felt like it was her fault, you know, if only she could try harder, then she could overcome it. But she was failing at that. She didn’t want people to see her stumbling.” [Read the complete interview here]

Dealing with Alzheimer’s & Dementia: Books, groups and more

There are many challenges that family members face when their loved one receives an Alzheimer’s or dementia diagnosis. The stages of accepting a diagnosis can be similar to the stages of grief. You may want to deny or ignore the problem. You may become angry, upset, and even depressed. Although it may be difficult, accepting the diagnosis and making a care plan for the future as a family is essential.

Educating yourself about the type of Alzheimer’s or dementia your loved one has been diagnosed with is a good first step. Talk to your loved one’s doctor about expectations, symptoms, and timeline of progression. Using this information, you and your family can create a plan for the future. Will they need part-time care now or around the clock assistance in the near future? Making these tough decisions earlier on helps both you and your loved one cope with a diagnosis.

Kim Williams-Paisley’s book is a great resource for family members dealing with dementia because it gives an honest, open view of the experience. If you’re looking for more Alzheimer’s and dementia reading, the Alzheimer’s Association has compiled a list of books and resources. With topics ranging from dementia activities, caregivers, explaining dementia to children, and spiritual approaches, this reading list provides a lot of support for families. Download the Alzheimer’s Book List here.

To learn more about Where the Light Gets In, including book club questions and resources, click here.

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