“Stay strong, you are not alone, and we will continue to fight for those who forget how to,” said Airen DeCarli. Airen is participating in the Lake County Walk to End Alzheimer’s on Saturday, October 2 in honor of her mother. For Airen, the Alzheimer’s Association signature fundraising event gives the opportunity to “walk closer to having a white flower, a survivor of this terrible disease. To get funding to run the tests we need so people no longer suffer and lose their memories. They worked so hard to make them.”
Airen’s mother was diagnosed with Stage 3 Dementia four years ago. “Due to the past year with the COVID-19 pandemic and her facility on lockdown for 13 and a half months, she has progressed to stage 6,” shared Airen. “There was minimal interaction during this time not only with her loved ones but also with facility members. Zoom calls depending on the day were usually confusing for her…Window visits were easier once allowed but my mom didn’t understand that she could see me and hear me through the headset, but couldn’t touch me because of the glass between us.
“It didn’t stop us though. In the cold months, I would wear layers and bring blankets and gloves and a hat while I showed her books with animal pictures. In July of 2020, I received a call saying my mom had tested positive for COVID-19, she wasn’t eating or drinking and they were taking her to the hospital. There were no Zoom calls at the hospital, only phone calls, to which mom didn’t understand anymore. She was scared and didn’t trust anyone.
“My mom pushed through…Even through the tough times, we made it work.”
Airen is grateful to now have easier access to her mother. “Visitations are in person now minus a few lockdowns every now and then for COVID-19 cases that arise. We go for walks around the pond at the facility complex, blow bubbles with bubble guns and she eats snacks that I know she loves. Sometimes a clarity moment pops through and she starts singing parts of a song that’s playing on my phone.”
Airen’s advice to other caregivers is to “be patient and know it’s okay that some days are better than others.” She wants those who haven’t faced Alzheimer’s or dementia to understand that “the caregivers are struggling just as badly as the ones with the disease. It doesn’t just affect the person with it, it affects all their loved ones, too.”
“We take one day at a time; some are better than others. Sometimes I cry after I leave her, sometimes I’m happy—it all depends on how the visits are. Each day is a roller coaster.”
Airen remains hopeful for a future without Alzheimer’s and dementia. “I will be strong and I will fight for her, for my family, and for all others going through it. I’m hoping together we can get that white flower.”
Join Airen in seeking an end to Alzheiemer’s and all other dementia by participating in your local Walk to End Alzheimer’s event. Register at alzheimers-illinois.org/walk.