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Family caregivers are essential workers too
In our diasporic South Asian community, if you are not a caregiver, you probably know of one or are coordinating care with your siblings for your elderly parents back in India. In the best of times, it can be challenging for family caregivers to take care of a loved one. But like everything else during these unprecedented pandemic times, caregiving has also changed with disruptions in our support systems.
Then came Covid
Uma Venkatesh has a 21 year old daughter Anjana, who has Cerebral Palsy. When it became clear that the special needs program at her local elementary school could no longer support her education in the most optimal environment, she started going to a specialized school – The Avalon Academy in Burlingame. Anjana is very social and loves going to school and has a supportive and loving community there.
When Covid hit the Bay Area in March 2020, the school shut down suddenly. It happened overnight and all lessons moved to Zoom. “But what is Zoom school for these kids?” asks Uma. “Physical Therapy on Zoom means she is on the floor with me and I have to do it based on what the Physical Therapist is saying.”
There was no break for Uma because “school happens, then lunch happens. It was a routine that was even tougher than working.”
Building a care network for Anjana
In the last few years before the pandemic, Uma realized that they needed a more long term care network for their daughter. In the first few years, she and her husband tried to do it all, but after repeated injuries to her wrist and shoulders they built a robust network of caregivers to support their family. It also helped them have some time for themselves.
When the pandemic hit, Uma was petrified. “It was a risk from day one. It was definitely something we had never experienced before and we didn’t know how to evaluate the risks. We had to first evaluate whether we let our caregivers come inside our house,” because all the caregivers have family.
After some consultations with doctors, they decided to keep the caregivers, but this now made Uma work overtime to mitigate the risks.
Reducing the risks
Uma says the year flew by in a jiffy, with zoom school and being super scared. “We would disinfect the house everyday. We would do everything online – so I extended my services to my caregivers” Uma bought their groceries also online so they needn’t go into the store. “I was taking care of this whole community of people, not just myself.”
But what kept Uma up all night was the fear of Anjana ending up in the hospital. “If she goes into the hospital, there is no priority. They won’t let you go into the hospital – she can’t advocate for herself.”
During the height of the pandemic when no one was allowed in the hospital with the patient, how do parents like Uma process their fears?
Caregiving in the United States
There are approximately 43.5 million caregivers who have provided unpaid care to an adult or child in the last 12 months, according to the National Alliance for Caregiving and AARP. In the state of California there are 4.5 million caregivers, said Dr. Donna Benton, Director, USC, Family Caregiver Support Center.
When Covid started, many of the people who were considered essential workers, were not thought of as family caregivers. “So in the beginning of Covid, before we even had vaccines, it was very difficult for family caregivers to keep their relatives and friends safe,” says Dr. Benton.
Most caregivers are in their forties and weren’t prioritized for vaccines or for PPE’s. That meant family caregivers constantly lived in fear of infecting the person they were caring for, while going about their regular life.
Dr. Benton, who has worked with caregivers for over 30 years as a part of the California Caregivers Resource Center, told an EMS briefing on January 13, that for the first time in 10 years, family caregivers, primarily women, dropped out of the workforce. “We know that women had a higher rate of dropping out of the workforce because they had this competing need to care for maybe an older adult and probably some younger children and they couldn’t do it all during this time.”
Caregivers felt more isolated socially during Covid, and experienced increasing levels of overall stress. They were torn between taking care of their elderly loved ones while managing the needs of the rest of their family.
Caring for your spouse as a senior
Ruth Rembret is the primary caregiver for her husband who has been diagnosed with multiple myeloma and has taken maintenance chemotherapy. He also has heart failure and high blood pressure and is at high risk. He really cannot afford to get a cold. Ruth does everything for him, from taking him to his doctor’s appointments to making his meals.
She is will not allow anyone to come into the house unvaccinated, and requires everyone to be masked.
“ You have two choices – you can choose to have this vaccine in your veins or you can choose to have formaldehyde in your veins – because that’s how serious it is.”
Ruth says, “In the last few months, I realized that I am a senior too. Sometimes I feel like I need a caregiver as well. I just recently had a mammogram and now I have to go in for a biopsy.”
She is afraid of getting sick because who will look after husband? This is a dilemma that many seniors around the world face.
Getting the vaccine and jumping the line
In 2021, vaccines became available but it became complicated and risky for caregivers to take their homebound charges to get one. If someone has dementia or Parkinsons, it’s difficult to get them dressed and into a car, while dealing with their fear and confusion in an unfamiliar place to get a vaccine.
“If we can begin to find more health centers where they can come to the homes in these special cases. And it is not only for these elderly, they have the same issue with younger children that have developmental disorders, all of those limitations. I don’t think we have enough community health workers who can go door to door,” said Dr. Bensen.
For parents like Uma, having a 21 year old who is high risk but not prioritized in the vaccine queue was frustrating.
Uma, her husband, and all her registered caregivers received their first shot by Jan 9 at the county fairgrounds in Santa Clara.
“Then, I am lobbying – when will my child get it?” But Anjana did not qualify because “she was not the appropriate age and she is not in a care facility.” The irony was that caregivers were prioritized for the vaccine but not the high risk person they were caring for.
“So, the way they had done all these wordings and paperwork that people were following, she was not categorized. High risk at home was not qualified until March or April (2021) – 4 months later. I would call everybody everyday, I would call my doctor’s office, she had no power to do anything. Of course I could have lied, lots of people lied through the system. But then you are leaving someone critical behind.”
Luckily as vaccines became more available, Anjana was able to get her booster shot more easily.
How Family Caregivers Cope in Covid
With the new Omicron surge, caregivers are unanimous in their simple needs. Uma and Ruth and countless other family caregivers need PPE’s, and need to be prioritized for boosters, and for testing.
One of Anjana’s caregivers’ family got Covid a couple weeks ago. She took a PCR test and had to wait a whole week to get the result. “What is the point of having these testing centers if the results are not given in time? And no priority for folks like caregivers.” says Uma.
Family caregivers have a difficult job to begin with and often offer complex care for their loved ones. “ We need some sort of priority for family caregivers,” said Dr. Benton, “because they are front line health workers and they need that recognition.”
Anjana Nagarajan-Butaney is a producer at DesiCollective. She is interested in strengthening communities by exploring the intersection of politics, science & technology, gender equality, social justice and health.