Family care for elderly people in the COVID-19 pandemic

By: Emily K. Abel, Professor Emerita, UCLA-Fielding School of Public Health

Devastating the long-term care system and posing special hazards to elderly people with chronic health problems, the COVID-19 pandemic aggravated virtually all the difficulties of family caregiving. Simultaneously, the crisis demonstrated the urgent need for social change by exposing the calamitous conditions of nursing homes, the lack of respect for the work of care, and the indifference of government officials to human suffering. Several groups, including many family caregivers, were spurred to action.

The following account draws on an on-line support group for dementia caregivers between March 2020 and January 2021.  The members include adult children as well as spouses and partners. The conversations are public, but members alone can post threads and responses. Membership requires establishing an account with a screen name. Although members are invited to provide additional personal information, most decline to do so. Some post repeatedly, others just once or twice.

When the pandemic struck, members watched in horror as nursing homes became deathtraps and then locked their doors. After learning that a worker in his wife’s facility had tested positive, one man concluded that his wife was “now in deadly danger,” adding “I have never felt so helpless.”

Terrified of the possibility of relatives in nursing homes contracting the disease or suffering from loneliness, a few caregivers brought them home. Others found innovative ways to stay in contact, sending flowers, cards, food, and photographs. When visits resumed, the caregivers were stunned to discover how much their relatives’ condition had deteriorated.

Support group members who were prevented from visiting patients in hospitals did not have to wait long to learn the consequences of the visitation ban. Within days and sometimes hours of leaving relatives with dementia at the hospital door, caregivers received reports that delirium had descended.

Other writers discussed the difficulties of sheltering in place with people who could not understand safety regulations or articulate their symptoms. In addition, the quarantine intensified the loneliness caregivers experienced even in the best of times. “I’m glad I’m an introvert,” one woman wrote five months into the pandemic, “but even I am missing normal contacts at this point.”

The pandemic also pushed care back on the home. Like children’s day care centers and schools, adult day services closed either voluntarily or under compulsion. Fearful of allowing strangers in their home, many family members canceled aides. Although the support group members had often complained about the inadequacy of respite services, most now realized they had been invaluable. After suspending the aide who had cared for his wife two afternoons a week, one man wrote, “Now I am on my own again, with no respite in sight!”

The various messages the writers posted challenged the reigning value system that characterized people with dementia as disposable. Over and over the writers argued that their relatives’ lives mattered and that relationships with them were precious and must be sustained. Forbidden to visit nursing home residents, writers described themselves as heartbroken, devastated, and in despair. In addition, some  took action, writing letters to pressure state officials to revoke the ban, attending legislative hearings on the issue, and joining “Caregivers for Compromise—Because Isolation Kills Too,” a Facebook group with more than 13,000 members by the end of October.

The pandemic both revealed and reinforced the interdependence of family caregivers and direct care workers. The pressures on nursing home staff quickly mounted when family visits ended. Unable to monitor their relatives’ well-being, families had to rely even more than before on nursing assistants to deliver good care, foster communication between residents and kin, and provide regular updates. Workers and families had to trust each other to follow public health advice.

The support group members appear to be largely white and middle-class. Direct care workers are overwhelmingly people of color who receive little pay and few, if any, benefits. Privileged Americans traditionally have viewed poor people, especially members of marginalized groups, as disease carriers. Rather than honoring the sacrifices home care aides and nursing home assistants made to provide essential assistance to a vulnerable population, some support group members viewed them as endangering the lives of the people they tended.

Overwhelmed with their own troubles and unable to cross the divides of class and race to join forces with the workers, the caregivers missed an opportunity to extol the importance of all caring labor.

Emily K. Abel is the author of Sick and Tired: An Intimate History of Fatigue.