Patricia Kienholz is a very busy woman. She is a single mother of two, an avid learner, working about 70-90 hours a week between her work in the nonprofit sector and helping to run a family-owned business. “I can’t stand idle time, and my brain only slows down when I’m sleeping,” she said. Still, Patricia takes the time to be an Alzheimer’s advocate.
“I see advocacy as an obligation more than I do a choice,” said Patricia. Her journey as an advocate was spurred when she, her sister and her mother, were called to Indiana to rescue her uncle Bill, a vulnerable adult with dementia, who was being severely abused and exploited financially. They were told by the state it would be a “seamless transfer” from Indiana to Washington, and came together as a family to deal with the critical emergency. Two years later, they began litigation, which proved to be a complex process of ups and downs. “As we navigated our way through the system, each day was more traumatizing than the day before,” she said.
“To give people a little glimpse into how a situation like ours begins and how it can impact an average family on a personal level, imagine for a minute your 87-year-old mother or grandmother. They’re in good health, of strong will and mind, survived the Great Depression and World War II, took preventative measures for longevity, raised a loving family, braved the death of eight siblings and a spouse — and at their finest hour, the moment when all the hard work has paid off, all the bad times are behind them, and days on this earth are truly limited and every moment with this person is cherished — suddenly, they discover their brother is being completely physically and financially exploited. A horror. Everything the person ever worked for is being taken. Their personhood — gone. That’s what happened to our mum. At the point we heard the news, she hopped on a plane to rescue her brother. When she exited the plane, she had completely lost her hearing. The stress of her situation caused her to go deaf,” Patricia said.
Stories like this are not uncommon. Stressful situations such as this one often have tertiary side effects, like her mother’s hearing loss, that Patricia says “no one talks about.” As an Alzheimer’s advocate, she hopes that discussions about situations like this become more common.
As an Alzheimer’s advocate and member of the Spokane Dementia Action Team, Patricia finds that people reach out to her to talk about their stories. She began to realize dementia was more prevalent than she ever knew.
“So many wonderful people who care about this problem are helping me articulate things they want to say. They ask me to tell their stories and not to forget about them. Many of them are Alzheimer’s and dementia patients. So as long as I have a voice, I’ll help tell the story. I now wholly appreciate things I always took for granted, things like time to do dishes, the trickle of the faucet when I can sit in the tub for five minutes, or opportunities for focused conversations with my children. The ordinary things become blessings,” she said.
The Spokane Dementia Action Team, works to bring Alzheimer’s and dementia education to local professionals in the healthcare industry. Right now, the Spokane Dementia Action Team is working on a project to make Spokane a dementia-friendly community. As an advocate, Patricia has a few goals:
“My sister and I spend a lot of time talking about what needs to change in the care setting and protocols addressing Alzheimer’s and dementia patients…We have to address the rural people or others who don’t have family or services close by and the corresponding exploitation. As an advocate I hope to change attitudes and increase funding for research and treatment. As just a person, I plan to contribute to policies that ensure protections for vulnerable adults guaranteed by the Constitution. Right now we’re coming up short and it’s never too late to make things better and better.”
Do you want to share your Alzheimer’s advocacy story? On Feb. 19, join Alzheimer’s advocates in Olympia as we press state legislators to fund better care and support and other priority recommendations in the Alzheimer’s State Plan. Registrants receive issue training and lunch before their teams visit Senators and Representatives in the afternoon.
For questions about Advocacy Day, contact Peter Newbould: firstname.lastname@example.org or 206.529.3867.