Susy Bogdan didn’t plan on having her 91-year-old mother as a roommate.
The family had paid thousands of dollars so that her mom could live comfortably in a retirement community that would transition her from independent living to skilled nursing care if she ever needed it. Then the COVID-19 pandemic hit, and everything changed.
Bogdan, 54, is one of many people who started taking care of their loved ones themselves as a result of COVID-19. A survey published in late 2020 from the collaborative Embracing Carers found 13% of respondents became unpaid caregivers for the first time during the pandemic.
Bogdan initially brought her mom, Jan, to stay with her in her condo near St. Petersburg in the spring of 2020. Her mom was living at Freedom Square of Seminole, which at the time was experiencing one of the state’s deadliest nursing home coronavirus outbreaks. Bodgan’s mom lived in a separate building and was not infected, but she was still concerned.
Soon after Jan moved in, she fell and broke her femur, and had to go back. She stayed in assisted living for nearly a year.
Bogdan said staff were doing the best they could to provide her mom with quality care and communicate with the family, but they were overwhelmed. Bogdan said she spent a lot of time taking care of her mom when she would visit — if she was allowed to visit. Restrictions on visitors to curb the spread of infection made it challenging for Bogdan to help her mom.
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She said it was heartbreaking to watch her mom and fellow residents suffer.
“As much as I wanted to see her, I just dreaded going in there,” sighed Bogdan, who said she struggled emotionally during much of this time. “I just felt like crying every time. I really tried to stay positive and do everything I could, but it felt like I was abandoning her.”
Lindsay Peterson, a professor with the University of South Florida's College of Aging Studies, said she has heard similar things from families in her own research on dementia patients.
"Even with the caregivers knowing it was going to increase their responsibility to have the person home with them, many did want to have them home because of the fear of the isolation, the fear of how it would worsen their dementia, the fear of how upset they would feel," she said.
Bogdan decided to pull her mom out permanently last year. It’s been an adjustment: she had to retrofit her bathroom with grab bars and an accordion-style door. She turned her office into a bedroom and lined the walls with family photos and other mementos. And she created a spreadsheet to accompany the color-coded pill container she uses to keep track of her mom’s many medications.
Bogdan said she knows she's privileged to even be able to care for her mom at home and still has concerns about what may happen down the line if her mom requires more care.
“But for now, I am grateful every hour of every day that I have her living with me,” she said.
Jan feels the same way.
"I just couldn't be happier,” she said, sitting in a squishy armchair behind her walker. “It’s just like being in my own home."
According to the Embracing Carers survey, more than 70% of respondents said they will need to spend more time providing care in the future because the pandemic made them distrust nursing homes, assisted living facilities and retirement communities. The report was published before COVID-19 vaccines were widely available, but experts say some families are still thinking differently about long-term care.
“Now, where we’ve started to turn a corner and we’re seeing a lower infection rate in nursing homes and hospices, we're still dealing with family members who are understandably hesitant and would like to do everything they can to have their loved one stay at home,” said Lisa Winstel, chief operating office at the Caregiver Action Network, which partners with Embracing Carers.
But caring for an elderly loved one at home can be challenging, and data shows COVID-19 exacerbated existing problems for caregivers and harmed their mental health.
“Caregivers wound up caring for longer hours, more hours per week, and with less or fewer supports than they had before the pandemic,” said Winstel.
Peterson with USF said the responsibility is especially tough for people who lack support networks or who face financial barriers.
“It is very difficult and money can't solve every problem. But when you're talking about getting help with care at home, it goes a long way,” she said.
A lot of health insurance plans don't cover home care services, so many families wind up paying out of pocket, which may not be feasible for some people.
Adult day care centers in the community can offer caregivers an opportunity to get some relief, but many still haven’t fully reopened due to the pandemic.
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There is also state and federal assistance available, including home care covered through Medicaid and programs for veterans and their relatives.
But Peterson said those often involve long wait lists and complicated application processes.
“It is a full-time job to find the services and sometimes the services that are provided are very helpful but are just not enough,” she said.
Pinellas County residents Ali Jaber and his mother, Fatemeh Mohareri, can relate. They say hospice nurses who came to Mohareri’s home a few times a week were a huge help caring for her dying father, who had dementia and suffered from a stroke.
But most of the work still fell on her, with her son coming by after he got off work each night to help.
Jaber recalls seeing his mom hunched over as she struggled to move her father, Mahmoud Mohareri, who became much heavier after the stroke reduced his mobility.
“I saw the physical toll it took on her,” said Jaber. “It was brutal.”
His grandfather’s dementia also kept him up at night and sometimes caused him to get agitated. The family said it was painful for them to watch a man they loved and revered so much deteriorate.
Jaber said they did their best to provide moments of joy for his grandfather as his condition declined. He recalls carrying his grandfather, who was a devout Muslim, so that he could help put him in the proper positions to complete the daily prayers that had been vital to his life.
Still, Jaber said the exhaustion and other challenges were overwhelming. He tried to appeal to his mom to rethink their plans.
“I wanted her to put him in a home, promising that we would just visit him daily so that he wouldn't be alone,” he said.
But this all happened as COVID first started spreading in Florida. When they realized putting him in a facility could mean they'd never get to see him again, they pushed forward.
“I wouldn't let him die somewhere that nobody knows who he is or he can’t talk or they don't understand him,” said Fatehmeh Mohareri, who added her father only spoke Farsi, so would not have been able to communicate easily with staff.
“So here we are,” she continued. “Until the last breath, he was here.”
Ali Jaber said as difficult as it was, he believes it was worth the sacrifice to have his grandfather surrounded by family when he died later that spring. He was 99 years old.
“I think keeping him here was the most dignified way to end his life,” he said.
Advocates for family caregivers are calling on policymakers to make it easier to access and afford home health care so that more people can have similar opportunities.
AARP has a list of resources for caregivers in Florida and a toll-free Family Caregiving Resource Line: 1-877-333-5885.
Find your local Area Agency on Aging or Aging and Disability Resource Center. It helps administer community-based services and signs up families for government assistance, and is run by the Florida Department of Elder Affairs.
The Caregiver Action Network has a Caregiver Help Desk that offers free support: 855-227-3640.
Stephanie Colombini produced this story as part of the America Amplified initiative using community engagement to inform and strengthen local, regional and national journalism. America Amplified is a public media initiative funded by the Corporation for Public Broadcasting.
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