‘There’s Just No Voice for Us’: Pandemic Creates More Difficulties for Caregivers

Two people at a table with a tablet in front of themHenry Lenard Jr. and his wife, Helen, had been caring for their son, Henry III, who has severe autism, for all his life. Their 15-year-old son is a sophomore in Northgate High School's Life Skills program. 

However, Henry Lenard Jr. became a caregiver to both starting in 2013 after Helen was diagnosed with early stage breast cancer that returned as stage IV metastatic breast cancer in the spring of 2016. At the advice of his financial adviser, he took early social security so he could be at home in Bellevue, Pennsylvania, more to take care of his family.

But, when the COVID-19 pandemic hit the U.S. this spring, it created even more hardship for the family.

“My son has been off school since schools were closed earlier this year. He can’t be home alone, so I haven’t been able to give my wife moral support at chemotherapy treatments,” Lenard said. “We support the schools shutting down to protect against the pandemic, and we’ve been doing remote learning with his school, but it’s not the same. He’s been losing social awareness because he’s at home all the time now. And my wife can’t do things like go to the grocery store because of her immunocompromised situation. I’m having to do all these tasks.”

The family is one of many struggling with illness and caregiving during the pandemic.

And results of a survey led by the National Rehabilitation Research and Training Center on Family Support at the University of Pittsburgh revealed that caregivers have faced increased difficulties since the pandemic began.

The cover of a report, in blue and goldAmong the key findings in the spring 2020 survey of over 3,500 family caregivers and non-caregivers from throughout Allegheny County and beyond include:

  • 43% of caregivers reported their mental health was worse than before the pandemic.
  • 27% of caregivers said their physical health was worse than before the pandemic, compared to 18% of non-caregivers.
  • 43% of caregivers said their finances are now worse than before the pandemic.
  • 29% of caregivers said that since the pandemic started, they are now more worried about having enough food and being able to pay for food.
  • 31% of caregivers said their ability to access health care was worse than before the pandemic.

Scott Beach, co-director at the center, said while he expected the overall results, he was surprised by their consistency, with younger caregivers experiencing similar difficulties as older caregivers. The same goes for caregivers of varying levels of education and financial income, as well as caregiving for both mental and physical health and caregiving for younger and older patients.

“The results were what I expected, but also more intense than what I expected. COVID-19 is very stressful for everybody. I just worry if people get depressed or stuck in the house with preexisting conditions, it will just make things worse,” said Beach, who is also, interim director and director of survey research of Pitt’s University Center for Social and Urban Research.

Worries about isolation

Caregivers are also concerned about social isolation and its effect on mental health. Michelle Sipple, Vice President of Achieva Family Trust, cares for her 18-year-old son, Coby, who has a traumatic brain injury, an autoimmune disorder and a mild intellectual disability. Coby attends Pine-Richland High School, where he will complete his senior year.

“He’s a very social guy and very structure-oriented,” Sipple said. “One day, he’s going to school, he’s with his friends and doing extracurricular activities; the next, all that is taken away from him. It was extremely difficult in those first few weeks. He became really sad and depressed that he couldn’t do the things he wanted to do.”

Sipple and her husband have been balancing their work lives with taking care of Coby at home. She said she wants people to understand the impact the pandemic has had on caregivers like herself.

“I don’t think people truly understand. My situation is mild compared to other people’s situations, but there’s just no voice for us,” she said. “It’s not as easy as just staying at home.”

Lenard agrees. “We don’t broadcast to the world what we go through, but a lot of times, you almost think that people are indifferent to what you go through,” he said.

Helping to ease the burden

Heidi Donovan, professor in Pitt’s School of Nursing’s Department of Health and Community Systems, says healthy, able family members could ease some of the burden caregivers face by helping out their loved ones. She also says caregivers should stay informed, but limit the amount of news they take in, focus on what they can control in their lives and try to find daily routines.

“If you’re feeling overwhelmed, distressed or depressed, reach out to your health care provider for help. They can refer you to counseling and other resources,” said Donovan, another co-director of the Pitt center.

Resources to help

The National Rehabilitation Research and Training Center on Family offers resources and information on their website and is planning to host a virtual town hall in August to provide advice to caregivers.

They also host a monthly family support webinar for family caregivers and a comprehensive list of COVID-19 resources. People can also sign up for the center’s mailing list on the bottom of the COVID-19 resources page.

Caregivers are welcome to reach out to outreach coordinator Heather Tomko at caregiving@pitt.edu for assistance in finding the support and resources they need.

Other organizations that can help with caregiving include the National Alliance for Caregiving, the Centers for Disease Control and Prevention, the AARP Caregiver Support Line and the VA Caregiver Support Line.