The reality of living with Alzheimer’s: ‘We're trying to preserve the person’
Theon Phillips never thought he would need to take care of his “fiercely independent” elder sister Adrianne. He knew her as a brilliant, career-focused woman who had charted her own path.
“If anything,” he said, “I thought she would end up taking care of me.”
But, at just 57, Adrianne was diagnosed with Alzheimer’s disease. She has been living with it for five years now, with Phillips as her primary caregiver. The disease has progressed to the point where she is nonverbal and needs around-the-clock care.
Adrianne attends an adult day care while Phillips works. While she has a personal assistant for extra help on the weekends, Adrianne’s diagnosis changed Phillip’s life immensely. His daughters and his wife also help take care of Adrianne as much as they can.
The arrangement may not have been easy for Phillips, but it’s a far better situation than the one other families find themselves facing after a diagnosis, said gerontologist Arnesia Calk.
“I think what he has is amazing,” she said. “We want someone who has this disease to be in a very loving caregiving environment where the burden is shared.”
But getting access to resources, treatment and care can usually only happen once someone has been diagnosed — and many people face significant challenges when pursuing a diagnosis.
It took Deborah Jobe of Lake St. Louis about six months to get diagnosed with early-onset Alzheimer’s after exhibiting symptoms. Though six months is relatively short compared to other people’s experiences, Calk said it is still too long.
“We're trying to preserve the person. We're trying to preserve their body. We're trying to preserve their mind,” she said. “We as people deserve [to know] if we do have this. And if so, then we should be able to try to be more preventative and lead a much healthier lifestyle.”
For a disease that gets worse over time but that can be slowed down if caught early, shortening the length of time it takes to achieve a diagnosis is crucial.
“There's the misperception that it's less common in minoritized populations, but it actually is more prevalent,” said Dr. Monique Williams, senior medical director at Oak Street Health. “That’s one of the reasons why … it is important to make sure our care teams represent the demographics of old-timers.”
To hear what it is like to live with Alzheimer's and what it means to provide care for those who have it, listen to the full conversation with Deborah Jobe, Theon Phillips, Arenisia Calk and Dr. Monique Williams by listening to St. Louis on the Air on Apple Podcast, Spotify, Google Podcast, Stitcher, or by clicking the play button below.
“St. Louis on the Air” brings you the stories of St. Louis and the people who live, work and create in our region. The show is produced by Miya Norfleet, Emily Woodbury, Danny Wicentowski, Elaine Cha and Alex Heuer. Avery Rogers is our production assistant. The audio engineer is Aaron Doerr. Send questions and comments about this story to firstname.lastname@example.org.