Caregiving is never easy, and COVID-19 has made it harder

Style Magazine Newswire | 5/7/2020, 2:28 p.m.
Melia Wilkinson cares for her husband, Kerry, who in 2014 had a massive stroke.
(Shestock, Getty Images)

By American Heart Association News

Melia Wilkinson cares for her husband, Kerry, who in 2014 had a massive stroke.

Today, the 57-year-old has no use of his left hand, limited use of his left leg, and relies on a cane to get around the house. Kerry can do many things on his own, Melia said, but she helps him with daily activities, such as dressing, and manages his medical care.

While caregiving has always been challenging, the era of COVID-19 is fraught with new anxiety.

"We have nobody," she said. "I worry if I get COVID, there isn't a person who could step in."

The couple and their teenage daughter live near Seattle in King County, Washington, an early U.S. coronavirus hotbed, and far from relatives. Since the virus appeared, Melia has discontinued housekeeping help, and social distancing has put their small network of friends and ex-colleagues out of reach.

Normal support systems have buckled, said clinical psychologist and health care consultant Barry J. Jacobs. For loved ones who need help at home, longtime health aides may now be unavailable. Or families might be torn between allowing outside aides to continue care, risking coronavirus exposure, versus taking over that care – or letting the care gap go unfilled.

"I have seen families struggle with all of that," Jacobs said. "These are very difficult choices."

For loved ones living alone, whether they are safe and can meet personal needs is a crucial test.

"Does it seem like they are eating? Sleeping? Taking their medicines?" said Deborah Dunn, national president of the Gerontological Advanced Practice Nurses Association. "When the medications are messed up or they have a bruise on their hip, now you have to make other choices." Those choices can include moving someone to a senior care facility – or moving them out if COVID-19 occurs there.

"There are no right answers here, and in many cases you're charged with making the best decision you can among bad options," said Jacobs, who writes about caregiving for AARP. "People shouldn't beat themselves up later for things that didn't turn out ideally. We have to accept that we're doing the best we can with the most love we can muster."

Caregivers also must navigate a radically changed health care system.

Under stay-at-home orders, Melia had to cancel a half-dozen necessary medical appointments. She worries about access to her husband's medicines, including a seizure drug that recently was sold out at her usual pharmacy. "He can't go a day without his regular medications," she said.

In routine care, telehealth is filling some gaps, said Dunn, professor and dean of The Graduate School at Madonna University in Livonia, Michigan. But COVID-19 lockdowns have shifted more of the burden of detecting and triaging health problems to families.

Dunn advises families to compile an easily accessed list of their loved one's conditions, medicines, health care providers and pharmacy, and to monitor supplies such as glucose testing strips. "It's that preparedness plan you never need, until you need it," she said.