Actress Kimberly Williams-Paisley, known for her role as the young bride in the movie “Father of the Bride,” shared during an Alzheimer’s Alliance of Smith County luncheon Monday her family’s experiences after her mother was diagnosed with dementia. She also gave advice to families of Alzheimer’s victims.
Williams-Paisley has written The New York Times bestseller book, “Where the Light Gets In: Losing My Mother Only to Find Her Again,” about her mother’s diagnosis at the age of 62 of primary progressive aphasia, a type of dementia affecting speech and language.
Explaining why she wrote the book, Williams-Paisley said, “My mother’s dementia was the hardest thing that our family has ever been through and the hardest part of the ordeal lasted about seven years until she was put into long-term care.”
When that part was over, she said, her whole family felt shattered and she wanted to take the reins of what felt like a tragic story and turn it into something positive.
“I wanted to help other people not make the same mistakes we made; I wanted to advocate for people in my mother’s situation and families like mine and I wanted to create a road map I wish we had when we started on this journey,” Williams-Paisley said. “And I wanted to pay tribute to my mother.”
Showing a picture of her mother happy at the beach, Williams-Paisley said, “The message my mother gave me my whole childhood was to come out and have adventures.”
She described her mother as a fundraiser for the Michael J. Fox Foundation for Parkinson Research and as someone with exuberant joy and ability to connect with people. “She knew how to ask people for millions of dollars and get it,” Williams-Paisley said.
Engaged eight months after she met Brad Paisley, the actress said it was the happiest day of her life when she called home and told her parents. There was silence on the other end of the line, Williams-Paisley said, adding she did not think her mother quite got it.
“Maybe it was the beginning of behavioral issues with my mom,” Williams-Paisley said, saying her mother reacted very irrationally.
On the day of the wedding, “mom was inconsolable when she found out she wasn’t in the ceremony, so at the last minute we gave her a reading to do,” she said, but her mother mispronounced words and stumbled over the reading. “We wrote it off,” Williams-Paisley said.
Then, over the next year or two, her mother started to have more and more trouble speaking and was having difficulty doing her job for the Fox Foundation.
Not long after the wedding, her mother admitted she was having trouble signing checks at the grocery store. Over time the problems got worse, Williams-Paisley said.
In 2005, her mother was diagnosed with dementia and told that within seven years, she would need total care and would not be able to speak or write. Her mother asked what she was supposed to do and the doctor suggested she go home and be a grandmother.
Williams-Paisley said she was suddenly thrown into being a caregiver for her own children and caring for her mother, although her dad was her mother’s primary caregiver.
Her mother asked that her condition be kept a secret because she did not want pity or people to feel sorry for her. That meant the family did not get a lot of support from organizations like the Alzheimer’s Alliance, Williams-Paisley said.
Her mother’s symptoms got worse and she had to retire. Williams-Paisley started to worry about her child’s safety around her mother, which hurt her mother’s feelings.
Driving was an issue. Because her mother had pride and wanted to be autonomous, “my dad let her drive way longer than she should have,” Williams-Paisley said.
Her mother started having trouble using utensils, eating spaghetti with a knife or just with her hands. Basic tasks like dressing, making coffee and pushing the button on the microwave were difficult for her.
When her mother began having manic spells, Williams-Paisley became afraid for her father. The family brought in people to help him with her mother but eventually decided to put her mother in a long-term care facility in 2012.
“It was the best thing for my family,” Williams-Paisley said.
Upon visiting her mother in the facility, she found that her mother was happy.
“My mom was always a people person and here she was with a bunch of people. She was loved by her caregivers there,” Williams-Paisley said. Her mother, now nonverbal and who doesn’t recognize anybody, was recently moved into full-time hospice care.
“There were mistakes we made I want to pass on and hopefully you won’t make them or if you do, you’ll know that you are not alone,” Williams-Paisley told the audience.
“The first is to avoid stigma, don’t try to keep it a secret,” she advised, “Because it’s important to reach out into the community and to get help, particularly with something like driving,” Williams-Paisley said.
A doctor can write a prescription for a driving test so that the doctor is the messenger rather than the family, which causes anger, she said.
Pay attention to the caregiver, Williams-Paisley said, noting her father did not realize how much danger he was in and the risk caregivers are in for depression and other things.
Get the patient to write down their specific wishes and forgive yourself for mistakes and forgive the patient, Williams-Paisley advised. Stay active in the community, with relationships with people and with the Alzheimer’s Alliance to help raise awareness, she said.
Proceeds from the luncheon will support local programs and services of the Alzheimer’s Alliance of Smith County.