By Elissa Lee, contributing writer
“Why am I here? Where am I? Please take me home. ¿Por qué estoy aqui? ¿Donde estoy? Por favor llévame a mi casa.”
Frequent — almost daily cries that Ashley Lopez, 28, hears from her room. Lopez, a caregiver for her grandmother, who has heard this on repeat for nearly four years, calls back in Spanish, a reply nearly verbatim, “Grandma, you live here now. If you leave, who will take care of me?”
Some days, this sense of purpose is enough to calm Aurora Ponce, 83, from her sundowning. Other days, the family performs a constellation of activities to placate, soothe, distract her. Ponce, who was an esthetician in Delicias, Chihuahua, Mexico, more than half a century ago, responds well to watching her granddaughter do both their nails, hair, and makeup.
“Can you ask Karina to do this instead?” she’ll quip at Lopez, peering at her ruby-red nails.
Lopez laughs at herself and reminds Ponce, “Remember the time you permed cousin Karina’s hair when she was three? And didn’t tell anyone?” Ponce grins mischievously back, “Sí.”
And still other days — most days, Lopez admits — it’s not so easy. Ponce, who lives with her daughter, Laura Bobadilla-Ponce, and granddaughter, Lopez, in Lancaster, was placed in hospice for late-stage dementia in April 2021.
Multiple organizations have sounded the alarm on the impact of COVID-19 on caregivers, particularly those looking after people living with dementia. Research has shown significant increases of anxiety and burnout, among caregivers particularly in relation to the fear of spreading the disease to their care recipients, taking on additional caregiving duties, and worsening financial problems. A study by the University of Pittsburgh found that 56% of family caregivers reported that COVID-19 has made caregiving more emotionally difficult.
The Alzheimer’s Association, which runs a 24/7 helpline, has seen this shift in callers since the pandemic. “Pre-COVID, the calls were much more transactional, like… can you give me this referral?” said Susan Howland, Program Director of the California Southland Chapter. “And now they tend to be a bit more complex and almost emotional… caregivers are saying ‘I’m at my wit’s end, I don’t think I’m doing a good enough job, I’m not sure I can take this one more day.’”
Caregivers, who previously would have additional respites such as adult day programs and visits from friends and family, are isolated at home with their loved ones in fear of COVID exposure.
In early December, the week before her final exams, Lopez was stunned to learn that her mother had contracted COVID-19. She found herself both fearing for her mother and grandmother, and that the illness might again disrupt her ability to finish school. “What if I can’t finish [finals] again?… And that’s not even the worst part,” Lopez managed between sobs. Worried about quarantine restrictions, she asked, “ What if… what if I can’t say goodbye to Grandma?”
A love for learning
Ponce first immigrated from Chihuahua to South Central with her husband in 1968, and worked three or four jobs at a time in the Garment District for nearly thirty years. When her grandchildren were born, Ponce started caring for them while their parents worked. Ponce would take Lopez to East L.A. for doctor’s appointments, the Toy District for gel pens and Hello Kitty stationery, the Expo Park for the museums, roses and raspado.
She instilled in her granddaughter a love of learning, and to attain the American Dream the way immigrant families know best — attending college. “She would take me to USC and the California Science Center for activities,” said Lopez. “She also made sure to read to me in Spanish everyday, and put on PBS’s The Reading Rainbow for English programming.”
When Bobadilla-Ponce and Lopez moved to Lancaster in 1999, Ponce followed shortly after, moving into a senior apartment complex a few miles away. Grandmother and granddaughter continued their reading rituals at the Lancaster Public Library, across the street from Ponce’s apartment.
As Ponce’s health deteriorated, Lopez signed up to be a caregiver for her through In-Home Support Services (IHSS). Years of working multiple jobs, including cleaning and managing properties, sorting and lifting heavy boxes of credit cards, and sewing bathing suits and other garments had given Ponce multiple long-term injuries, including ruptured discs in her spine and a prolapsed bladder. The state gave Lopez five hours a day; she was there much more than that, between her community college coursework, to keep Ponce company as well as cook and clean, amongst other things.
Lopez started noticing little things. “I would give her her medication, and then she would ask for another one a few minutes later. When I left, she had periods of time where she would call us every five minutes, because she didn’t remember she had just called.”
One day, Lopez was studying for a midterm and had turned off her phone for an hour to focus. “Grandma couldn’t reach me, so she was in a severe panic. She decided she would walk to our house.”
The senior complex Ponce lived in was about three miles away. “She ended up tripping and falling a mile in, injuring her knee, and thankfully she remembered our address, and some kind passerby was able to help her up and give her a ride to our house.”
When the family brought it up to the doctor, he recommended physical therapy for her knee. Lopez and Ponce-Bobadilla attributed the frequent calling to attachment anxiety.
It wasn’t until five years later, in 2017, when Ponce fell again, this time in the shower, hitting her head on the sink, that she was formally diagnosed with Alzheimer’s dementia. “The ER neurologist showed us the MRI (scans} and there was noticeable shrinking in her brain,” Bobadilla-Ponce said. Ponce was only then referred for cognitive testing.
By then, she had already been staying over with her daughter and granddaughter frequently due to increased concerns with her safety. “She was already doing things like leaving the stove on and letting the water run, and she was feeling very lonely,” said Bobadilla-Ponce. “I didn’t recognize those things at the time, because I didn’t know. If I would have recognized those things, I could have gotten her the hours and assistance that she needed.”
‘When are you going to finish school?’
In early 2020, at 26, Lopez had yet to fulfill her and her grandmother’s dream of transferring to a four-year college, and moved from Lancaster to Los Angeles so that she could focus on completing her studies at Santa Monica College. “Even in her dementia, she very explicitly tells me all the time that she wants me to finish college,” said Lopez. “Grandma might be dying, but she doesn’t forget this and she won’t let me forget. She gets these little moments when her cognition is better, and she asks, ‘When are you going to finish school? I want you to finish school so you can be okay and take care of yourself and take care of your mom.’”
Two months later, the pandemic hit and classes were moved online. Ponce started falling again — and the neurologist explained that her brain had stopped transmitting signals to her legs to work and that she would need a wheelchair moving forward. Lopez resolved to move back home to help with caregiving.
Bobadilla-Ponce, who works full-time as a secretary, is the primary caregiver after her long commutes from her job in Alhambra, nights, and weekends. “There have been so many times where I would sit and cry, and say, I can’t do it anymore,” she said. “You have a mental fog because you’re so tired, you can’t sleep well. You’re stressed about what’s to come, and you know what’s to come, and you lose your ability to think because you’re just so focused on trying to make sure she’s okay, and trying to get through it one day at a time.”
Worldwide, there have been continuous reports of worsening symptoms in persons with dementia, likely due to disrupted daily routines and a lack of mental stimulation, social activities, and more.
“The whole disruption of the day-to-day routines has been a struggle, and that just spills over onto the caregiver and increases their stress,” said Howland.
Howland recommends that caregivers reach out for help and respite through different services, such as the helpline, support groups, or day programs. “We’re at the point where a lot of services that support caregivers of persons living with dementia have figured out the pandemic,” she said. “A lot of adult day programs are like slowly opening doors, or are doing virtual programs. It’s not an ideal situation, but if that individual living with dementia can engage in an hour of an adult day program or social activity, it will benefit the caregiver so that they can take care of themselves to try to address their stress, maybe attend a support group.”
The family continues to have a few relatives during the weekdays to help with caregiving, but between COVID-19 exposures and a number of other factors, the care has been tenuous at best: in December 2021 alone, Bobadilla-Ponce herself and both caregivers tested positive for COVID-19, all on separate weeks. “The back-to-back COVID-19 was probably the most terrifying thing I’ve ever had to go through,” said Lopez. “The tensions are high, but we know that everyone is just trying to take care of each other and trying to protect one another despite everything falling apart.”
“I know that Ashley needs help concentrating in order to finish school, and she has sacrificed so much to help with my mom,” said Bobadilla-Ponce. “That still hurts me because I want her to finish her classes, I want her to do good. But she steps in, because financially, I wouldn’t be able to lose my job, or else I wouldn’t be able to take care of my home and my family.”
Lopez continues to struggle to finish her coursework for her associate’s degree; since 2020, she has withdrawn from 7 classes at Santa Monica College. “I’ll be on Zoom, doing a chemistry quiz, having to show the teacher my calculator and spreadsheet, and then suddenly Grandma will be crying out for me. I can try to focus for the 30 minutes that the quiz takes, but Grandma needed me. She needs me. What can I do?”
But Bobadilla-Ponce and Lopez wouldn’t change it for the world. They look for the moments of joy. “In our culture, you don’t give up on the people you love,” said Bobadilla-Ponce. “And I think that has gotten me through, as I see her decline. I’m not ready for the day that’s going to come when I know she’ll pass, but at least I know in my heart, that we’ve given her the best that we have, and that day when she leaves, we know that she’s going to take all that love with her.”
On the rare days that the caregiving goes more smoothly, Lopez will log off Zoom and walk into the living room. “Grandma will say, ‘Did you just come back from school, sweetie?’” Lopez said. “And I’ll nod, because even though it’s in my room, I technically did. And she’ll clasp my hand and say, ‘Good, I’m glad that you’re back home now.’”
This report was written with the support of a journalism fellowship from The Gerontological Society of America, The Journalists Network on Generations and the Archstone Foundation.
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