Theon Phillips

Theon Phillips has been the primary caregiver for his sister Adrianne Phillips since she was diagnosed with dementia in 2017.

One East St. Louis native is doing all he can to care for his sister through the pandemic.

November is National Alzheimer’s Disease Awareness Month in addition to National Family Caregiver’s Month.

Theon Phillips, 58, is a Belleville resident who grew up in East St. Louis with his sister Adrianne, 61, who has dementia and has cared for her since 2017. 

According to Phillips, she was diagnosed at 57, which is a “relatively young age for the disease,” but is now progressing to the later stages of Alzheimer’s.

According to her brother, Adrianne breezed through school in East St. Louis and Southern Illinois University, got a position at Ameren, then moved and worked for Colgate Palm Olive in Michigan. He said she loved jazz music, fashion, and traveling to different places.

“Adrianne kept journals chronicling her travels with her college friends,” Phillips said. “I’m glad that she kept those journals because they gave us a glimpse into who she was because she is not that same person anymore.”

Before being diagnosed with Alzheimer’s, Phillips described his sister as being “fiercely independent” and able to manage money well. He said he knew there was a problem when Adrianne’s college friends and their family members reached out to him about her developing weird behavior.

“I noticed that she began to get distracted through our conversations when it first developed, but the first time it was acknowledged was when one of her college friends reached out to me on Facebook and then in a follow-up call, they said they thought there was something wrong with Adrianne and that I should pay attention,” he said.

According to her brother, relatives who live in Michigan also said they had incidents with Adrienne when she could not find her keys or park at a grocery store, walk home, then say she lost her car.

“With all of the red flags…I went to Michigan, went with her to see doctors and neurologists,” he said. “They saw that she had some cognitive decline and suggested we go to Washington University in St. Louis because they have one of the best facilities in the country for neurological diseases and Alzheimer’s,” Phillips said. 

He said Adrianne received the official diagnosis in 2017, in addition to Phillips moving in with her to become his caregiver.

However, his sister’s condition has worsened over the past year to the point where she must be supervised when Phillips goes to work.

“In 2018, I was able to leave her at home or drop her off to sit with relatives, but as the disease progressed, she was unable to stay at home alone,” he said. “As the disease progresses, the level of care progresses; this time last year, she put her own shoes on but now I have to put her shoes on for her. I have to feed her now, and the language barrier has increased between us since she can’t talk anymore.”

Phillips tapped into resources at the Alzheimer's Association to help him navigate this disease as he is his sister's primary caregiver. 

“Through the Alzheimer’s Association, I was able to learn about caregiver’s assistance at St. John’s Community Care, which is an adult daycare,” Phillips said.

During the lockdown period of the COVID-19 pandemic, adult daycares closed, but Adrianne’s brother was able to find assistance in other places.

“The world stopped, but Adrianne’s disease did not stop,” Phillips said. “The Department of Rehabilitation Services doors stayed open, though. They were able to step in and …send me a personal assistant until adult daycare services reopened earlier this year.”

He went on to talk about the number of resources available to assist caregivers who may be caring for someone for the first time.

“This is my sister, but Adrianne is not the first person to suffer from Alzheimer’s,” he said. “There are resources available that I did not know existed, like St. John’s Community Care and Memory Care Home Solutions, and they helped me navigate this with my sister so far.”

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