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An estimated 5.2 million Americans live with Alzheimer’s disease, and according to the Alzheimer’s Association, nearly two-thirds of them are women.
The Women’s Initiative of the Alzheimer’s Association California Central Chapter is a group of volunteers and community leaders who came together in support of the organization during November’s Alzheimer’s Awareness Month.
Lady Leslie Ridley-Tree was honorary chairwoman for Friday’s inaugural fundraising event at The Fess Parker. Led by co-chairwomen Gerd Jordano and Anne Towbes, the “Your Brain Matters” Luncheon honored caregivers Glen Adams (Spouse Caregiver Award), Susan Stewart (Family Member Caregiver Award) and Lorena Angeles (Healthcare Employee).
“The Alzheimer’s Association is proud to support and recognize these unsung heroes who often sacrifice their own needs to provide care for the people they love,” said Rhonda Spiegel, CEO of the Alzheimer’s Association California Central Chapter.
The large crowd of more than 500 supporters and guests was graced with a courageous and at times heartbreaking story from celebrity keynote speaker Kimberly Williams-Paisley, an actress, director, writer, wife of country music star Brad Paisley and mom of two boys.
Williams-Paisley has another aspect of her life, however: her mother, Linda Barbara Williams has Alzheimer’s.
A fundraiser for the Michael J. Fox Foundation for Parkinson’s Research, Williams was diagnosed in 2006 with Primary Progressive Aphasia, a rare form of dementia that involves a progressive loss of language function, and, over five to six years, the ability to read and write.
During her slow decline the symptoms began to appear, including forgetfulness of daily formalities often taken for granted — how to write a check, understanding numbers, the occasional loss of car keys, forgetting people’s names and repeating a story shared a few minutes before.
At the time of her mother’s diagnosis, Williams-Paisley was pregnant with her first child, and she said she wondered how much time her son would have with his grandmother.
“I thought what was life going to be like without my mom and then the dawning realization that I can barely begin to fathom, what’s life going to be like with mom?” she recalled.
Williams-Paisley went on to describe watching as her once very independent mother began doubting herself. She said she had to rely more and more on her husband as she lost the ability to problem solve and drive her own car when she had become a danger to herself and others.
“One day she barreled past a row of parked cars and across the parking lot and drove her SUV on top of a two-foot high wall,” she said. “We realized how serious things had become.
“She started leaving the house by herself, and an old high school friend of mine saw her walking along the side of the road. She had accidents, stumbling, falling. Once she sliced her arm — blood everywhere — and my dad had to take her to the ER yet again.”
As a picture of her mother was displayed on two projector screens, Williams-Paisley described her mother as frugal, opinionated, funny, compassionate and vivacious — a woman who taught her how to love thunderstorms growing up and who was a great listener and believer in miracles.
“She was my cheerleader when I needed courage, my nurse when I was sick, she was my therapist when I needed to vent,” she said. “For better or worse, my mother made me who I am today.”
Even through the fog of helplessness and the pain of the disease, Williams-Paisley confessed that there were vivid moments of clarity and hope that shone from her mother.
“For a while there were parts of my mom that I actually liked better at times — the open-hearted passion was even brighter at times,” she said. “She couldn’t change my son’s diaper but she’d get down on the floor and play with him for hours.
“She became less judgmental of people and didn’t care much about clothes or manners. She cheered us on more then ever.”
As the years passed, Williams-Paisley said her mother became more agitated, angry and abusive to family members and nurses, and the decision was made to place her in a home that could properly care for her needs.
“She sits in a wheelchair most of the time sleeping, drooling, her head tilted forward,” Williams-Paisley said. “I have to practice loving her in a new way, and I have to accept who she is now and what she can give me now — a wide-eyed look of delight when I walk in the room, a sigh that says ‘I’m glad you are here.’”
The Alzheimer’s Association California Central Chapter provides professional-level dementia care training for family caregivers in a four-week program. To assist with concerns like daily life and behaviors and communication, the Savvy Caregiver workshop series will be offered in Solvang starting Feb. 3, Carpinteria on April 1, Santa Maria on June 16, and Santa Barbara on Sept. 9.
Additionally, the Confident Caregiver Series is a comprehensive free monthly educational series in collaboration with Visiting Nurse and Hospice Care. The program provides workshops for family caregivers of dementia patients with classes on the second Thursday of the month, starting Jan. 8 and continuing through Nov. 12. Call 800.272.3900 for more information and to reserve space in the program.
For those unable to attend a course, there are online options available, including E-learning courses; Alzheimer’s Navigator with tools and customized action plans; and ALZConnected, an online social networking community.
Dr. Laurel Coleman, a special guest speaker and board member of the Alzheimer’s Impact Movement, emphasized that the investment of research and the increase in funding by the federal government and the Alzheimer’s Association has led to major advancements in scientific research, including a biomarker for Alzheimer’s disease.
“A biomarker is something that allows us to know the progress of the illness or the presence of the disease before the first symptoms start, or are at risk of developing,” she explained.
Coleman also noted that researchers at Harvard University have been able to grow Alzheimer’s cells in test tubes, a development that will present a model in which more compounds can be tested to speed up research.
It is estimated that caring for those with Alzheimer’s and other dementia symptoms will total $214 billion in 2014, and increase to $1.2 trillion by 2050 at today’s rates.
“This is the most expensive disease in the United States right now in health care,” Coleman said. “The time is now that we can make some changes in public policy and research.”
— Noozhawk iSociety columnist Melissa Walker can be reached at mwalker@noozhawk.com. Follow Noozhawk on Twitter: @noozhawk, @NoozhawkSociety, @NoozhawkNews and @NoozhawkBiz. Become a fan of Noozhawk on Facebook.
