In the 10 years since her mother’s primary progressive aphasia diagnosis, Kimberly Williams-Paisley has watched dementia claim more and more of the mom she’s always known. The key to not letting the disease also destroy her in the process? Learning to love the person her mom was becoming.
“People change and evolve in life anyway and this is just an extreme evolution in my mother,” the actress and author, 43, tells PEOPLE of her mom Linda, who is now completely non-verbal and living in a memory care facility. “There were ways that she changed along the way that I loved. She became goofier and funnier. She became more accepting of me in a lot of ways.
“There were times when I was a mother and she just delighted in me, whereas in the past, she may have been a little more critical or she might have meddled a little more,” says Williams-Paisley.
“As it was, she just adored me and adored my kids [Huck, 8½, and Jasper, 6, with husband Brad Paisley] and adored being a grandmother. A lot of the anxiety and judgment that she used to have disappeared for a time. There was a phase where that’s where she was and it was really fun watching her delight in her grandchildren and delight in life and have that passion and joy that was unbridled because she didn’t really have an awareness of who she was in the same way she used to. She let go of a lot of inhibitions.”
Still, it’s been a tough road for the entire family, not the least of which has been her dad, who handled much of her mom’s care for many years.
“I know my father got lost, even with the support of his family,” says the actress. “He stopped returning calls and wouldn’t listen to reason. He got sucked into her disease and didn’t realize how much help he needed. It’s very important for people in this situation to ask for help and accept it and get the help wherever they can. ”
That’s why Williams-Paisley signed on to be a spokesperson for both the National Association of Insurance Commissioners and the Alzheimer’s Association. She’s spreading the word that there are resources out there that can help.
“I think for anybody going through it, a key is finding a community of people that can support you,’ says Williams-Paisley, who will release a book on the experience, Where the Light Gets In, in March. “Certainly, there are tons of resources out there if you don’t have family.”
For more from Williams-Paisley, pick up the latest issue of PEOPLE, on newsstands now