Wish Book: ‘She took care of me, now it’s my turn’: Hearts and Minds Activity Center gives dementia patients new life
“They’re coming for me! They’re going to kill me!”
Minerva Aguilan ran to her daughter Myra Tanting in the wee hours of this particular morning screaming, as she had done so many times before.
Aguilan would say people outside her window were coming for her, and describe how she saw and heard violent things she couldn’t explain. She felt surveilled, anxious and crazy. She called the police multiple times; EMTs too. She felt a fear she’d never known before.
But Tanting knew no one was watching her 80-year-old mother through the window of their San Jose home, just as there wasn’t the other times this happened.
“First I thought she was just dreaming,” Tanting said. “It’s like in the horror movies, where the child says they saw something and you just brush it off. But it kept happening. That’s when I realized something was wrong with my mom.”
Then on February 2022, Aguilan was diagnosed with dementia, after months of throwing her family’s life into disarray.
She turned to Hearts and Minds Activity Center — a San Jose clinic specializing in caring for dementia patients and caregivers. And the love and care she received there truly helped her, she said.
“February was when I heard one of the most difficult things in my life,” Aguilan said of the diagnosis. “But February was also when I started to feel happy again. I remember feeling so scared, so depressed, and so alone. Now I’m taken care of.”
The activity center is seeking $35,000 from Wish Book readers to provide 300 days of dementia-specific adult social day care services for its lowest income and most economically vulnerable program participants. Donations would support 2,550 hours of ongoing, dementia-specific adult day care services, including activities and social connection.
The large-capacity clinic serves dozens of dementia patients with different levels of the disease, and clinical staff like Maria Nicolacoudis tailor personal care routines for each patient.
Dementia isn’t a specific disease, but a group of conditions that impair judgment and brain function, leading to memory loss, forgetfulness and limited social skills, according to Alz.org, a website specializing in information on Alzheimer’s and dementia patients.
Before the diagnosis, Tanting had no way of explaining her mother’s behavior, sleeping patterns and mood. She could see her mother was depressed, a little frightened by her environment, and not talking much or socializing. After consulting with doctors, Aguilan started on medications that helped her stop seeing and hearing things that weren’t there, and she started to feel better.
Hearts and Minds supports clients like Aguilan and caregivers like Tanting, Nicolacoudis said, with its mission to “create an environment where people have friends and a continuum of care as the disease progresses.” The center also runs a daycare for children too, so dementia patients and kids can interact and show each other support.
“Dementia is a disease that causes isolation, as it progresses people don’t keep up with family or friends,” Nicolacoudis said. “You’ll have dementia patients often sit there at functions or social situations and not say anything. Everyone may be talking about their vacation or something, but they tense up and say ‘I don’t know and isolate themselves. Here they have a social group.”
Aguilan remembers feeling standoffish during her first visit to the clinic, even though Nicolacoudis treated her nicely as did the rest of the staff. In a way, Aguilan said, she didn’t want to accept that she needed the help.
During her career, Aguilan had worked with high-functioning disabled people at the Kaiser Permanente hospital in San Jose, setting up activities for them and giving them care during a day program meant to ease the burden on family caregivers and provide socialization to disabled folks who would otherwise be stuck at home.
It wasn’t lost to her how similar this experience at Hearts and Minds was to her old job.
“I had been a teacher,” Aguilan said of her role at Kaiser. “And then all of a sudden I landed here and I’m a student. I was nervous, but then I started to feel normal again.”
The medications took away the voices and the strange visions Aguilan had been experiencing, and the support from Hearts and Minds gave her her life back, she said. Tanting felt relieved after finding the clinic, saying that what had once been a sickness that upended her life is now manageable and she no longer feels alone in trying to care for her mom.
“It was very hard dealing with a parent who is sick,” Tanting said. “You really don’t know until you have been in that position of caring for someone with mental problems. It’s just hard, especially if it’s a loved one. It was really, really hard, is all I can say, but now it’s night and day.”
Tanting said Hearts and Minds had helped Aguilan conquer her isolation and give her new life.
“This place gives her purpose,” Tanting said. “She seems more active. She interacts with people. She does arts and crafts and has fun. They are sick, yes, but they depend on each other and socialize and keep each other well here. Combined with the medicine and help from this place, it’s amazing.
“It was always important for me to take care of her, and there were times I felt like I couldn’t. But she took care of me, and now it’s my turn.”
THE WISH BOOK SERIES
Wish Book is a 501(c)(3) nonprofit organization operated by The Mercury News. Since 1983, Wish Book has been producing series of stories during the holiday season that highlight the wishes of those in need and invite readers to help fulfill them.
WISH
Donations will help Hearts & Minds Activity Center provide 300 days of adult social day care and caregiver respite services for their lowest and most economically vulnerable clients who suffer from dementia. Goal: $35,000
HOW TO GIVE
Donate at wishbook.mercurynews.com or mail in the coupon.
ONLINE EXTRA
Read other Wish Book stories, view photos and video at wishbook.mercurynews.com.