Pat Brown will fight the disease to the end
Jacob R. Simburger, communications manager for the local Alzheimer’s Association, was anxious to share Pat Brown’s story. April 18 is the start of Volunteer Week and Simburger could think of no better person to highlight than Brown.
Brown, Simburger wrote to The American, has been a volunteer “group leader” with the organization since 2012. She’s also a “faith ambassador,” someone who shares Alzheimer’s information and resources at local churches. Brown’s dedication “really shined through during the pandemic,” Simburger said, referring to the twice-monthly Zoom meetings Brown facilitates for spouses and relatives of Alzheimer’s patients.
Brown, 67, is humbled by Simburger’s tribute, but in explaining her motivations, she boiled it down to simply repaying a service she received during a dire time in own her life.
Brown’s mother, Hazel Chamberland, died at the age of 76 in 2014 from complications related to Alzheimer’s. The symptoms came on gradually, Brown recalled. At first, her mom just couldn’t remember names of simple things like “phone book.” Within five years, however, her mom could no longer walk, feed herself or go to the restroom without assistance. It took a lot for her and her six remaining siblings to convince their dad, Alvin Chamberland, 88, to place their mother in a nursing home.
“Even though he didn’t want to do it, it was just too much for him,” Brown said. “Mom was also a diabetic who needed insulin. Sometimes dad would forget to give it to her, and she would become so lethargic.”
Brown said her father was in denial about his wife’s condition. It was all too much. She was frustrated that he would take her mom to doctor’s appointments but would always sit in the waiting room. This was problematic because her mother never remembered the doctor’s advice and her father was uninformed. Brown confronted the practitioners but was frustrated with their response.
Brown, who at the time worked an administrative position in the Hazelwood School District, decided to take family medical leave to care for her mom. She dedicated herself to learning everything she could about Alzheimer’s and different stages of dementia, such as presenile dementia, senile dementia, and post-traumatic dementia. Not only would she accompany her mother on her doctor appointments, but she also started attending the Alzheimer’s Association’s support groups.
At those meetings Brown learned race-related facts about Alzheimer’s, such as it being more prevalent among Blacks than whites; that there are greater genetic risks of Alzheimer’s in Blacks and that environmental factors may work differently in causing the disease in the Black population.
According to the national Alzheimer’s Association, the epidemic of Alzheimer’s will continue to spread over the next 30 years, as the number of Blacks entering the age of risk more than doubles to 6.9 million.
After nine months in the nursing home, Brown’s mother passed away. But her passion to learn and share more about Alzheimer’s, especially among Blacks increased. When asked to lead her own support group, Brown challenged the administrators:
“The thing about Black people is that we don’t want everybody to know our business. We sort of brush things under the rug,” Brown explained. “They were having workshops in different areas but none in our communities. So, before I started, I explained to them that a lot of Black seniors are not going to travel out of their way for information. You have to bring it to our community.”
Because of her insistence, Brown said, the Alzheimer’s Association started a support group at Christian Hospital NorthEast in St. Louis County. Brown was asked to lead the group, which met one-to-two times every month. The response has been robust, Brown said. Many in the group, she added, have expressed appreciation that they can access information and support in their own neighborhood.
With the onset of the COVID-19 pandemic, Brown was confronted with even more disturbing facts related to Alzheimer’s and dementia. For instance, according to the Alzheimer’s Association, people living with dementia are twice as likely to get COVID-19 and four times more likely to die from it and, that in Missouri there were 1,037 more deaths from dementia in 2020 than compared to the last five year averages.
Brown said her father is starting to show signs of short-term memory loss. She takes some comfort in the fact that her mother’s twin sister, 83, nor any other member of her family tree, that she knows of, have or had Alzheimer’s. Still, as an African American and daughter of an Alzheimer’s victim, Brown is aware of the racial and genetic risks.
“Yes, I’m aware but I try not to think about it,” Brown said. “I try to keep myself as healthy as I can. I go to the gym at least four times a week. I stay active and I have a trust and a will that details what I want to happen just in case.”
Until the virus is contained andBrown can resume normal activities she loves like going to the movies and socializing, she’s content serving as a volunteer for the long haul.
“I’m staying with it because I see so many people afflicted by the disease who need information,” Brown said. “I’ve told the folks at the Alzheimer’s Association that I’m going to stick with this until they find some sort of cure. I want to see it through until the end.”
