Dementia and COVID Heartbreaking Rubric – Orange County Registry

Author Elissa Lee, contributing writer

“Why am I here? Where am I? Please take me home. ¿Por qué estoy aquí? ¿Donde estoy? Por an, llévame a mi casa. “

The frequent – almost daily cries that 28-year-old Ashley Lopez hears from her room. Lopez, a carer for her grandmother who had heard this repeatedly for nearly four years, called back in Spanish, an almost verbatim reply, “Grandma, you live there. this. If I leave, who will take care of me? ”

Some days, this sense of purpose is enough to soothe 83-year-old Aurora Ponce from her moodiness. Other days, the family does a constellation of activities to calm her down, distract her, and distract her. Ponce, a esthetician in Delicias, Chihuahua, Mexico, more than half a century ago, was delighted to watch her niece do her nails, hair, and makeup.

“Can you ask Karina to do this instead?” she’ll sarcastic Lopez, looking at her ruby ​​fingernails.

Lopez laughed to herself and reminded Ponce, “Remember the time you curled your cousin Karina’s hair when she was three? And don’t tell anyone? ” Ponce smiled mischievously in response, “Sí.”

And still other days – most days, Lopez admits – it’s not so easy. Ponce, who lives with her daughter, Laura Bobadilla-Ponce, and niece, Lopez, of Lancaster, were admitted to a workhouse with end-stage dementia in April 2021.

Many organizations have sounded the alarm about the impact of COVID-19 on caregivers, especially those caring for people with dementia. Research has shown significant increase in anxiety and burnoutbetween caregivers in particular regarding fear of infecting their care recipientstake on additional caregiving duties, and exacerbate financial problems. A study by the University of Pittsburgh found that 56% of family caregivers said COVID-19 made caregiving more difficult emotionally.

The Alzheimer’s Association, which operates a 24/7 helpline, has noticed a change in caller numbers since the pandemic. “Before COVID, calls were more transactional, like… can you give me this referral?” Susan Howland, Program Director of the California Southland Chapter said. “And now they tend to be a little more complex and almost emotional… the caregivers are saying, ‘I’ve ended my intelligence, I don’t think I’m doing a good enough job, I’m not sure I can take on this one more day.'”

Caregivers, who will previously have extra respite such as adult day programs and visits from friends and family, are isolated at home with their loved ones for fear exposed to COVID.

In early December, a week before her final exams, Lopez was shocked to learn that her mother had contracted COVID-19. She finds herself fearing both for her mother and grandmother, and that the illness may again affect her ability to attend 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, “If…what if I can’t say goodbye to grandma?”

Love learning

Ponce first immigrated from Chihuahua to South Central with her husband in 1968, and worked three or four jobs at once in the Garment District for nearly thirty years. When her grandchildren were born, Ponce started taking care of them while their parents worked. Ponce will take Lopez to East LA for a doctor’s appointment, Hello Kitty gel pens and stationery, Expo Park for museums, roses and raspado.

She instilled in her niece a love of learning and for achieving the American Dream the way immigrant families know best – attending college. “She would take me to USC and the California Science Center for activities,” Lopez said. “She also made sure to read to me in Spanish every day, and put PBS’s The Reading Rainbow for an English show.”

When Bobadilla-Ponce and Lopez moved to Lancaster in 1999, Ponce followed soon after, moving into a luxury apartment complex a few miles away. She and her granddaughter continued their reading ritual at the Lancaster Public Library, across from Ponce’s apartment.

As Ponce’s health deteriorated, Lopez enrolled as her carer through In-Home Supportive Services (IHSS). Years of multi-tasking, including cleaning and managing property, sorting and lifting heavy credit card boxes, and making bathing suits and other clothing, left Ponce with a variety of long-term injuries, including spinal disc rupture and bladder prolapse. The state gave Lopez 5 hours a day; she was there more than that, in between her community college studies, to maintain the company Ponce as well as to cook and clean, among other things.

Lopez is starting to notice the little things. “I would give her the medicine, and then she would ask for another dose a few minutes later. When I left, she had periods where she would call us every 5 minutes, because she didn’t remember she just called.”

One day, Lopez was in midterm and had turned off her phone for an hour to concentrate. “Grandma couldn’t contact me, so she panicked. She decided to walk to our house.”

The upscale complex that Ponce lived in was about three miles away. “She ended up tripping and injuring her knee, and fortunately she remembered our address, and some kind passerby was able to help her up and get her to the hospital. our house.”

The family brought her to the doctor to prescribe physical therapy for her knee joints. Lopez and Ponce-Bobadilla attribute the frequent calls 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 officially diagnosed with Alzheimer’s dementia. “The ER neurologist showed us an MRI[scan]and her brain shrank dramatically,” says Bobadilla-Ponce.

At that time, she was often staying with her daughter and granddaughter due to growing concern for her safety. “She did things like turn on the stove and let the water run, and she felt very lonely,” says Bobadilla-Ponce. “I didn’t realize it at the time, because I didn’t know. If I had recognized those things, I would have been able to give her the time and help she needed.”

‘When will you finish your studies?’

In early 2020, at the age of 26, Lopez still hadn’t fulfilled her dream and her grandmother was transferring to a four-year college, and from Lancaster to Los Angeles so she could focus on completing her education. himself at Santa Monica College. “Even with dementia, she always told me emphatically that she wanted me to finish college,” says Lopez. “She may be dying, but she has not forgotten this and she will not let me. She gets these little moments when her awareness is better and she asks, ‘When will you finish your studies? I want you to finish school so you can settle down and take care of yourself and me. ‘”

Two months later, the pandemic hit and classes were moved online. Ponce started falling again – and the neurologist explained that her brain had stopped sending signals to her legs to function and she would need a wheelchair to move forward. Lopez decided to move home for convenience.

Bobadilla-Ponce, who works full-time as a secretary, is the primary caregiver after she leaves her job in the Alhambra, nights and weekends. “There were so many times I sat down and cried and said, I can’t do it anymore,” she said. “You have a mental fog because you are so tired, you can’t sleep well. You’re stressed about what’s coming, and you know what’s coming, and you lose your ability to think because you’re 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 consistently reports of worsening symptoms in people with dementia, possibly due to disruptions in daily routines and a lack of mental stimulation, social activities and activities. assembly, etc.

“The whole disruption of daily routines is a struggle, and that just piles up on caregivers and increases their stress,” Howland says.

Howland recommends caregivers reach out for help and respite through various services, such as helplines, support groups or day programs. “We are at a point where a lot of services supporting carers of people with dementia have discovered the pandemic,” she said. “A lot of adult day shows are like slowly opening doors, or virtual shows. It is not an ideal situation, but if the person living with dementia can take part in an hour of adult day program or social activity, it will benefit the caregiver. care so they can take care of themselves to try to work through their stress, maybe join a support group.”

Families continue to have a few relatives on weekdays to help with care, but between exposure to COVID-19 and a number of other factors, the best care is not needed: in December alone In 2021, Bobadilla-Ponce herself and both caregivers tested positive for COVID-19, all on separate weeks. “The backlash from COVID-19 was probably the most terrifying thing I’ve ever had to go through,” said Lopez. “Tensions are high, but we know that people are just trying to take care of each other and try to protect each other despite everything falling apart.”