By JOSEPH FITZGERALD
Sunday was Sierra Madden’s favorite day of the week as a young girl, especially in springtime when she and father, Steve Madden, would admire the tulips in full bloom as they walked hand-in-hand to St. Mary’s Church in Pawtucket, a weekly father-daughter ritual that included a dozen donuts before Mass.
Hot summer days cooling off in the family swimming pool in Burrillville was another favorite activity she shared with her dad – not because she really liked swimming, but because it was the only time she could have him all to herself. She loved it when her father would go to the basement, turn on an old stereo and play the Beach Boys and Michael Jackson. It was like magic, she says, when the music came out of the speakers on the ground near the pool.
Shortly after Sierra Madden turned 10, Alzheimer’s disease stole all of that away from her.
“I have this recurring dream. A dream of a memory that seems so distant and surreal. It is one of those memories where you wish that moment had never ended. I see him there, smiling and laughing the moment he sees me running to the truck. The sun is setting and the sky is beautiful. There my father stands, arms out and ready for me to jump in for a warm embrace. How long the hours seemed while he was away at work. How happy I was when he was finally home with me. How much I miss those long afternoons with the man he used to be.”
So begins the poignant and at times, heart-breaking, essay Madden, now 18, penned for the Alzheimer’s Foundation of America’s 2020 Teens for Alzheimer’s Awareness College Scholarship Essay Contest. The annual national competition asks high school seniors to describe how Alzheimer’s disease impacts their lives. This year, AFA awarded over $41,000 in college scholarships to 59 students from across the country, including Madden, a 2020 Burrillville High School graduate who was awarded a $1,000 college scholarship for her composition.
Madden’s eloquent and heartfelt essay impressed the panel of judges and even caught the attention of Charles J. Fuschillo, Jr., president of the AFA, a nonprofit organization that provides support, services and education to individuals, families and caregivers affected by Alzheimer’s.
“Sierra’s emotional essay about her father, his battle with Alzheimer’s disease, and the lessons she learned from those experiences will help raise Alzheimer’s awareness and provide strength and support to millions of other families who are dealing with the same challenges,” Fuschillo said. “We congratulate Sierra, thank her for sharing her story, and are grateful for her efforts in the fight against Alzheimer’s disease.”
Madden says she learned about the AFA essay contest from a teacher at Burrillville High School, where she graduated this past June. She is now a freshman at Eastern Connecticut University where she is studying biology.
She says she’s grateful for the $1,000 scholarship because she’s been working two jobs to help pay for college now that both of her parents are no longer working.
Madden’s award-winning essay describes fond memories with her father, now 73, before Alzheimer’s set in and how things began to change after he started to experience signs of the disease.
“I was 10 years old when I found out officially my dad was diagnosed with early-onset Alzheimers,” says Madden, who was adopted by her parents when she was 4. “I wasn’t sure what this meant at the time for my family. To me, he seemed fine, and my mother said he would be, so I thought, ‘what was there to worry about?”
But by the time Madden was in 4th grade, her father, who grew up in Pawtucket, was no longer able to work or drive. The roles of father and daughter, she said, were suddenly reversed.
“I would be coming home from school on the bus and there he was, ready for me to come home,” she says. “This was a time of bliss. I would be home with him and he would be smiling and happy to see me. We would watch TV together and make his famous grilled cheeses. I thought that it was almost a blessing that this thing called Alzheimer’s kept my dad home with me.”
But as she got older, Madden began to see more and more changes in her father’s behavior. He didn’t smile or talk as much as he used to and he started to gain weight.
“My mom had to remind him more and more to take his medicine,”she says. “Soon, she had to remind him to shower, change his clothes, and turn the lights off. Life was suddenly so complicated.”
It was a particularly heartbreaking period in Madden’s own life to see her father slowly succumb to the disease. He began arguing at every little thing, from getting in the shower to cleaning the dishes with soap.
“I began wanting to spend less and less time with my own dad. I felt like an awful person,” she says. “I was angry that he was like this and I didn’t know what to do. I wanted to scream and yell at him to act his age. He was suddenly acting more like a little brother than a dad. I wanted my dad back.”
She said the anger eventually turned into sadness, hopelessness and finally acceptance.
“I learned to accept all the things that came with my dad’s disease,” Madden says. “The more I accepted, the more I was able to understand him and see him as my dad again.”
She said life with her father would soon follow a pattern of good days and bad days.
“Some days he would remember me, other days he wouldn’t,” she says. ”Those were moments we had to see positively and laugh at. While it was sad to think about, we had to see that he was oblivious but happy, and that would ultimately make us happy.”
Madden says even on her father’s bad days there were always little moments when he would remember things like the dog’s name, when to reset his old clock, and when to go get the mail.
“It was a really good day when he would remember our names, remember to brush his teeth, change his clothes on his own, and get his own food,” she says. “Those days have become true gifts from God.”
Today, at the age of 20 and a freshman in college, Madden says her father continues to teach her lessons in life.
“He has taught me to go at life day by day and hope for the best. He has helped me become a stronger and better person,” she says.
Madden says her father’s struggles with Alzheimer’s has had a big influence on her future plans in life and her pursuit to some day become a doctor or psychiatrist.
“I owe all my motivation and self worth to my father who has helped me become the woman I am today,” she says. “If it were not for the lessons I have learned from taking care of him, I would not be as mature or self-driven as I am now. While he may not remember my name, I know he will always love me and be proud of me.”
Follow Joseph Fitzgerald on Twitter @jofitz7