In early March of this year, I used my spring break to fly out to see my elderly parents, ages 88 and 92, at their apartment in an assisted living complex in central Illinois. We had a pleasant visit and ate Chinese takeout in the sun-drenched dining room. I collected their income tax materials and threw out stacks of papers. We went to church together and I cleaned out a closet.
While there, I got a long text from one of my daughters. Living near a major research university, she knew epidemiologists had been tracking a virus that was rapidly spreading from China to the rest of the world. The epidemiologists thought it was going to be big. They encouraged buying food and supplies, suggesting we might even have to sequester for up to three weeks. On the way home, the flights were almost empty, and I noticed more face masks in the airport. Two days later, my parents’ facility closed to visitors.
In either the best or the worst timing in the world, I had made the nerve-wracking decision only a week earlier to put my husband of forty years in assisted living. His diagnosis of dementia was beginning to take its toll, and I felt increasingly anxious about leaving him for more than a few hours. For some time, I had been using the facility’s respite care program when I left town for work, but in February I decided that it was time for a more permanent solution.
He accepted the move with the dull indifference bequeathed to him by his condition. If anything, he was somewhat pleased with his small, neat apartment, being able to order a milkshake at the café, and having access to far more cable channels than at home. I reminded myself: Assisted living is not a prison. Residents can come and go. We had planned to go to the beach for a few days as soon as I got back from Illinois.
All of that was about to change.
With different levels of care, assisted living facilities provide help with “activities of daily living” such as bathing, dressing, medications, or transport. Some residents need nursing or intensive “memory care” services; others are there for short-term rehabilitation following an accident or hospital visit. The decision to move to a retirement community is a difficult one. Some merely decide they have had it with home ownership and move themselves. For others, worried adult children press the move after observing declines both large and small.
My father would go out in the bleak Illinois winter and try to break up the sheets of sidewalk ice with his cane. My mother had insisted she’d take care of things when she got around to it. Raised in the frugality of another age, my parents were resistant to hiring “help,” their Midwestern sensibilities set firmly against paying a stranger to clean the house. But after about five years of hints, heart-to-heart talks, arranging tours, gathering brochures, and finally a dangerous fall, they grew more open to the idea of moving to a local retirement center. Having met several friends who had taken the step, they agreed to follow suit when a coveted spot became available. It was an unspeakable amount of work to move them into the two-bedroom apartment. Three days after the move, I got a call from my mother, saying “We love, love, love it!” Everyone was so nice, the food was good, there were things to do every night. “Gotta go,” she said, “cello trio playing in the community room. Bye!”
Here’s the irony of assisted living. Most people move for safety. What many find, to their unexpected delight, is a new community. To be sure, not all retirement communities are equal; I am sure that some are little better than warehouses for the less able elderly. It must also be acknowledged that assisted living is very expensive and not every retiree has the means to enjoy the best facilities. My parents have been very fortunate, and what I have seen is a professional, caring staff, a beautiful and safe environment, and a welcome change for all of us.
But the COVID crisis has changed our perceptions of these communities, perhaps permanently. Nursing homes such as the facility in Kirkland, Washington, have become infamous as sites where the virus spread rapidly among a highly vulnerable population. Although it is widely known that the elderly and health-compromised have been hardest hit by the pandemic, it is often difficult to get a true picture of the statistics. At the beginning of June, the AARP reported that 43,000 long-term care patients and staff have died from COVID-19. The number may be considerably higher. Although states are required to report cases and deaths to the Centers for Disease Control (CDC), state officials are free to choose how they report data. The information is varied and inconsistent and sometimes politics plays into the situation, as when state governors under-report cases in order to justify reopening efforts.
Despite the problems in many assisted living communities, the residents have a different perspective on what happens, or should happen, in them, and we should keep that in mind as the COVID crisis drags on. The elderly have less time and they know it. While no one wants to get this virus or die from it, the elderly have been thinking about decline and made their own calculations about how they want to spend their remaining years. I overheard two residents discussing this on a recent visit to my parents: “My parents both died in their sixties,” one woman said. “I’m living on borrowed time. Every day is a gift.”
Just as any other people living in a community expect to have a say in how they live, so we should allow the elderly, as they are willing and able, to determine what the economists call the “opportunity costs” of assisted living. Taking into consideration factors such as longevity, lifestyle expectations, and general health conditions, residents in conversation with administrators might consider ideas such as further tiering of retirement centers. For example, assisted living facilities, whose residents require some daily assistance but not enough to need 24-hour care, could move to offer two levels of safety and risk. The levels could be separated by floors, elevators, staff and dining options, much as hospitals do now with their higher-risk patients. While normal pandemic precautions would be taken in both—such as daily temperature monitoring, the wearing of masks, avoiding large groups and sequestering upon known contact with a COVID patient—the “more freedom” floor would allow residents to visit friends or relatives, socialize with other residents, or attend an outdoors event. The “more safety” floor residents would have a smaller, consistent staff, be sequestered to rooms, and stay within the facility. The key would be well-informed consent among both residents and family members.
Questions such as individual safety, mobility, interactions, visits, programs with outside instructors, and many other factors might be addressed on a case-by-case basis. While I respect the monumental efforts of policymakers, staff, and caretakers, at some point the views of the resident must also be considered. The unhappy tradeoff between safety and freedom that is being played out in our society right now demands a different calculus among the elderly, and their choices may surprise us.