Finding Support and Advocating for a Cure

Brandy and her mother.

For Batavia resident Brandy Fernow, “everything changed” for her and her family once they received her mother’s Alzheimer’s disease diagnosis. Despite meeting with several physicians, Brandy noted that there was a huge learning curve that she felt wholly unprepared for.

Brandy had just become a mother herself when her mom was diagnosed, and felt that her mother was slipping away right as she needed her most. Her father took an early retirement to help care for Brandy’s mother as her disease began to progress.

Brandy and her family turned to the Alzheimer’s Association and found comfort and support.

Brandy and her mother surrounded by her grandchildren.

They attended educational webinars about dementia-related behaviors and utilized the Safe Return program. By arming herself with information about her mother’s disease, Brandy felt more prepared to support her dad as he entered into his new role as a caregiver and to support herself as she was raising her own family.

What Brandy wants others to know is that Alzheimer’s is a progressive disease and is fatal. “I had no idea how people actually die from it,” Brandy shared, and she added that the disease involves so much more than forgetfulness and memory changes. She felt particularly ill-equipped to handle her mother’s personality changes and difficulty with speaking and eating that would emerge. These challenges would ultimately result in the family’s difficult decision to move her mother into a memory care nursing home for additional care.

Brandy participated in the Walk to End Alzheimer’s with family, friends and even her mom before her passing. She feels strongly that more advocacy about the disease is needed. She encourages others in her position to “treasure every day,” because Alzheimer’s disease is “the longest goodbye.” Now, Brandy finds meaning by volunteering with the hospice organization that cared for her own mother at the end of her life. She visits patients living with Alzheimer’s disease each week to provide the social and emotional connection that she remembers her own mother enjoying.

Brandy and her family at Walk to End Alzheimer’s.

Since COVID-19 and the onset of new visitor restrictions at several nursing homes, Brandy still finds a way to connect with those living with Alzheimer’s—she and her kids write letters each week to patients living in local nursing homes. Though Brandy’s mother is no longer with her, she has made it her mission to continue to provide the support and connection that people living with Alzheimer’s disease need most.  

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

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