Watching a loved one suffer from dementia is one of the most difficult struggles a family will ever endure. Seeing your loved one become someone else is both frightening and tragic.
Ten years after her mother’s primary progressive aphasia diagnosis Kimberly Williams-Paisley speaks openly about how her family have learned to live with dementia.
“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 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.”
Williams-Paisley understands the importance of support for families of dementia sufferers after she watched her father struggle with her mother’s care.
“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 realise 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.”
Williams-Paisley is now an advocate for the resources that are out there for families and has become a spokesperson for both the National Association of Insurance Commissioners and the Alzheimer’s Association.
“I think for anybody going through it, a key is finding a community of people that can support you,’ says Williams-Paisley.
She will release a book entitled, Where The Light Gets In, chronicling her experience in March.
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