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09/02/2015 07:07 am ET

Kimberly Williams-Paisley Opens Up About Her Mother's Dementia

The actress says every family should have a long-term care plan in place.

For years, "Nashville" star Kimberly Williams-Paisley has been slowly losing her mother to primary progressive aphasia, a form of dementia that impairs language capabilities and for which there is no real treatment or cure. Now the actress, married to country music star Brad Paisley, is opening up about her family's experience and the resentment she's harbored for the incurable disease.
 
In her upcoming book, Where the Light Gets In, to be published by Crown next year, Williams-Paisley, 43, provides a window into what life has been like since her mother, Linda, was diagnosed roughly 10 years ago at age 61.
 

Williams-Paisley said that signs of the disease were subtle at first -- her mother had trouble signing her name, spelling the word "Chicago," and once asked for nachos at Starbucks -- but soon grew much worse when she began suffering falls, accidents that landed her in the ER and the inability to finish sentences.

After her father was no longer able to care for her mother on his own, the family realized that a long-term care facility was a better option. Williams-Paisley is a spokesperson for the National Association of Insurance Commissioners.

In late August, Williams-Paisley spent some time talking with The Huffington Post about her family's ordeal.

Huffington Post: What did you think when you first found out about your mother's condition?

Kimberly Williams-Paisley: We heard about the diagnosis Christmas of 2005 at our home in Nashville. My mother had gone through a lot of medical tests to find out what was wrong. I was very surprised. I knew she was having trouble, but I didn't know this was a long-term thing. There was an element of denial there. 

HP: What's happened since then and what's been most challenging?

KWP: It's different for every family, but for us, things would have been better if we'd had a plan in place. It would have been helpful to know what my mother wanted in terms of long-term care. What do you want to do when you are no longer able to care for yourself? This is the kind of question I wished we'd asked before it was too late. By the time we thought of it her mind wasn't there. All this is why I was really excited when the NAIC wanted to partner with me as there were lots of questions we didn't know to ask. 

HP: So the most important thing is to have a plan in place for long-term care?
 
KWP: You can bet I have my letter [plan] already made out and I'm only 43. Everyone should have a plan and should be prepared to deal with a family member becoming ill. Some people don't have long-term health care insurance. It's different for every family. But everyone needs to have a plan so they're prepared.
 
HP: How has this been for you personally?
 
KWP: There was the initial feeling that I lost my mom, the mom I knew, and then there was the feeling of finding a new mom and making the best of that. Some days are harder than others. There was also the caregiving part of it. It was very stressful for my father. He tried to be Superman. Ultimately we needed to find a long-term care facility for her. She's still alive but is in hospice care. She's non-verbal. She has good days and bad days.
 
HP: What would you tell someone who is just starting to go through what you've already been through?
 
KWP: I would tell them to go to the NAIC's site for consumers, which is insureuonline.org. But the time to do this is before you get a diagnosis. They have an easy website to navigate. You can find out how much insurance you need not only for long-term care, but also if you are a new parent or getting a new car, or in any situation. It's an unbiased resource. They are not selling anything. Also, the Alzheimer's Association is a fantastic resource. They have a 24-hour hotline that is free that will hook you up to resources. We didn't think they could help because my mom didn't have Alzheimer's, but they can.
 
HP: Anything else you want people to know?
 
KWP: Everyone should read the book Being Mortal. I read the book after the fact. I wish I'd read it beforehand.
 
This interview has been edited and condensed for clarity. 
 
Kimberly Williams-Paisley
 To reach the Alzheimer's Association's 24/7 hotline, call 1-800-272-3900.
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