As he travels to the state Capitol today [Jan. 16] to meet with legislators about improving outcomes for people living with Alzheimer’s disease, Wayne Brown will be thinking of his mother.
Edith Brown passed away in October after a 10-year struggle with the disease. Her son was the family member who cared most actively for her, including a period of more than two years when she was living in a memory care unit.
“It broke my heart every time I left her there,” Wayne Brown recalled this week. “I got in my car and cried … I felt like I was abandoning her.”
Edith Brown was born in Louisa County and lived much of her life in Montpelier. Caring for his mother led Wayne to develop a relationship with other families in the area coping with Alzheimer’s.
Recently he became co-facilitator of a support group that meets at the Betty J. Queen Intergenerational Center. The group has been led for several years by Jane Unbehagen, a Louisa resident who wrote a book about her experience helping her mother with Alzheimer’s. The book, “I Call My ‘Child’ Mom,” is available for sale in some stores in the county.
“I’m passionate about helping people cope with loved ones in the early stages of it,” Brown said. “A lot of people don’t know how to handle the symptoms that you typically see, and most don’t know where the resources are. They’re not as easy to find as you might think.”
Among the biggest hurdles are getting good advice on home care and insurance, including what Medicare will cover and what it won’t.
“Doctors don’t send people to the right places to get an accurate diagnosis, or even prescribe the right drugs,” Brown said.
Brown had no choice but to put his mother in a facility, he said. As the disease progressed, it became almost impossible for him to care for her on his own. The financial challenge of paying for a facility is “truly devastating,” he said.
Nor is quality care guaranteed in a memory care unit or other facilities where Alzheimer’s patients often end up. Brown was frustrated that many of the staff in these places didn’t have proper training. He spent a lot of time complaining to the director of the facility where Edith was staying.
These are some of the issues that Brown and other advocates will be talking about today with state legislators. They say there are more than 150,000 Virginians living with Alzheimer’s and other dementias.
Advocates want to increase public awareness, early detection and diagnosis of Alzheimer’s disease; build a dementia-capable workforce; increase access to home- and community-based services and enhance the quality of care in residential settings. The Virginia activists want the state Department of Health to coordinate these improvements.
The ultimate goal for advocates is a cure for the disease. But while recent research findings have offered hope for a breakthrough, that remains a distant goal.
“I lost my Mom but I learned a lot, and I know we as a society can do better for people going through this than we’re doing,” Brown said.
To learn more about this issue, call the Alzheimer's Association at 800.272.3900 or visit their website at alz.org/cwva