Family caregivers of people with long COVID bear an extra burden - WUSF Public Media

Over the years, Louise, now 72, has worked at various times as an art therapist, taught piano to children and adults and done medical interviewing for a cancer research team.

Though s he hadn't always been emotionally close to her aunt, she says, she took on the caregiving role, "because someone needed to" — even as she, too, dealt with her own symptoms of long COVID, including crushing fatigue and shortness of breath.

Between 8 and 23 million Americans are thought to have long COVID — meaning they have long-lasting symptoms that endure or arise months after infection, such as difficulty concentrating ("brain fog"), extreme tiredness, anxiety and shortness of breath.

Stories like the Salants' reveal another unfortunate reality about dealing with a complex chronic disease like long COVID, in contrast to an illness with a more straightforward diagnosis: Meeting the demands of the health care system itself can be a major burden.

With unpredictable symptoms that can wax and wane mysteriously, long COVID also requires exceptionally good record-keeping, in order to provide doctors with new clues.

By the late winter of 2021, months after she first came home from the rehab hospital, Eileen Salant started feeling stronger, and by April of that year she was able to venture out to the kosher deli in her neighborhood.