A loving, vibrant woman whose smile “lit up a room” is how Daisy Duarte describes her mother, Sonja Cardona.
The retired Chicago teacher’s aide loved everyone and would “take her shirt off her back for anyone,” says her daughter.
“She had kids that were very less fortunate at her school and she would go to Payless and just buy them shoes – little kids - on her break; her lunch break… My mom just had a heart of gold,” said Duarte.
About six years ago, Cardona was diagnosed with Alzheimer’s disease. After years of caring for others, the degenerative disorder has severely weakened Cardona’s memory, language and behavior to a point where she can no longer care for herself.
“It’s like having an infant. You gotta care for them that way.”
Since about the time of her diagnosis, when Cardona moved from Chicago to live with her daughter in Springfield, Duarte has been her primary care giver.
These days, that care starts with a series of checks of her mother beginning at 6 am, including diaper changes, if necessary. After Cardona wakes, usually no later than 11 am, she’s fed breakfast, and takes her medication.
“And then by that time the hospice nurse or hospice bath aide is here and they’ll help me do the bath aide or check oxygen levels and all that,” says Duarte. “And then I bathe here and get her ready for the day, sit her on the recliner and we watch TV.”
Throughout the afternoon, Duarte checks on her mother either to change her diaper or help her use the restroom. Medication is again administered at lunch and dinner. Bedtime is around 9 pm.
“Before she would just walk on her own or she would feed herself. I’m literally doing everything for her, from feeding her to bathing her.”
Verbal communication, says Duarte, is nearly nonexistent with her mother. She’s had to learn to identify little gestures Cardona makes.
“You know when she’s in pain because she’ll move a lot, she’ll fidget. And you’ll be like, ‘Mom does it hurt you?’ She doesn’t tell you yes or no but you’ll know because you start touching her all over to see what hurts and then you’ll see her facial reaction. You just gotta read her facial reactions and then you know something’s wrong. If she’s hungry – she holds stress balls – and she’ll try to eat ‘em. So I know she’s hungry then.”
According to her daughter, Cardona is in her final stages.
Duarte says the most challenging part has been, for nearly six years, witnessing the deterioration of a once strong, independent mother of three.
“Her smile is the only thing that I have from her right now. Because she can’t give me the affection.”
According to Duarte, her mother doesn’t qualify for a lot of medical benefits because her teacher’s pension exceeds certain income criteria.
“The Alzheimer’s Association has helped me a little. My friends – my friends to be honest with you they’ve been – my friends have been my backbone to everything through this road.”
With her mother’s rapid health decline in recent years, Duarte was forced to close down the sports bar she owned and operated. She’ll rarely leave the house some nights to meet with friends after her nephew, who recently moved in to help out, gets home from work. She says her mother comes first, second, and third in her life.
“My main focus is her. Till she’s not gone I won’t focus on me. I focus on my health, I do focus and try to focus more on me but she is my main priority.”
Yet Duarte has her own health concerns to consider. In 2014, doctors informed her she has a rare genetic mutation associated with early onset Alzheimer’s. The 41-year-old says she’s not showing any signs of the disease, and is currently participating in a clinical trial at Washington University in St. Louis. She’s in her third year of the double blind study, meaning neither the participants nor the experimenters know who is receiving a particular treatment.
“Just have the faith in the Lord that it is gonna work and we are gonna find a cure for it.”
Once a month, a nurse from St. Louis visits Duarte’s home in Springfield to administer a shot in her stomach. Once a year, Duarte spends a week in St. Louis to receive cognitive testing.
“I don’t believe I am [showing any symptoms.] My family would have told me something if I was starting. I will say I have caregiver’s stress – sometimes I forget. I do fifty-thousand things at one time so you just forget one little thing.”
Duarte added, “My main focus is just taking care of my mom and just pushing forward and staying positive.”
Currently, there is no cure for Alzheimer's. But according to the Alzheimer’s Association, drug and non-drug treatments may help with both cognitive and behavioral symptoms.
The story of Duarte and her mother was featured in the Jan. 25 national premiere of “Alzheimer’s: Every Minute Counts,” on PBS. View the full episode here.
Duarte, who spoke to KSMU the day after it aired, said she cried “about three or four times throughout.”
“You see it on TV and you’re just like, ‘Wow,’ you’re hoping to make a difference in other people’s lives. If you have a loved one that has a disease and you’re ashamed of it to look for help or what not I hope this premiere, that documentary helped you understand that you’re not alone. There are plenty of people out there, there’s thousands and thousands of people fighting the same battle that you’re fighting in silence. Stand up to the disease.”
That means voicing support for more resources to fight the disease and identify a cure, says Duarte.
When not busy caring for her mother, Duarte serves as a patient and caregiver advocate with the organization LatinosAgainstAlzheimer’s, part of the Washington, D.C.-based UsAgainstAlzheimer’s. In addition to funding challenges, she believes more can be done to bring awareness to the issue by way of research, public service announcements, and action on behalf of policymakers.
“If you don’t know someone, or you don’t have someone in your family with this disease you are bound to know someone. This disease is taking over.”
Duarte recently signed on for two more years in the clinical study at Washington University, which will continue her monthly treatment. Along with her advocacy for those impacted by the disease, and the daily care she provides her mother, Duarte is waging a continuous fight against Alzheimer’s.
“I don’t want my nieces and nephew to have to do what I’m doing for my mom to me. But if me taking a stance to the disease finds a cure, then I know I’m did something right.”