My aunt stares into space and smiles, but she is not smiling at me. She is smiling somewhere into the distance, over my head, at a place only she can see as the aide wheels her onto the nursing home’s patio for our outdoor visit.
The change in Aunt Jo on this October day startles me. “Why isn’t she talking?” I ask the aide. My eyes rest on my aunt’s hair, her crowning glory. The red in her hair has faded except for a few stray wisps, and her signature bouffant “bubble” has deflated and touches the collar of her jacket in long, white strands.
Growing up in the house with her, I never saw my aunt without every dyed red hair in place, the result of a weekly visit, and near-religious ritual, at Pellicone’s Beauty Parlor on Front Street in town. There she would have her hair washed, set, and then teased and sprayed with an entire can of hairspray, I think, so that it stayed perfectly in place until the following Thursday.
When Covid-19 began spreading in March 2020, the nursing home’s onsite beauty parlor closed, to comply with guidance issued by the Centers for Medicare & Medicaid Services (CMS) and interpreted and enforced by state health departments. This rule, and the others that followed, fell especially hard on long-term care (LTC) facilities, and for good reason: A third of all deaths, in New Jersey and across the United States, have occurred in nursing homes and other LTC facilities.
I understand that our federal health care agency initially could not consider beauty services an “essential service” initially, but after eight months? Why can’t the nursing home’s beauty parlor be redesigned, with social distancing like in my hair salon, so that the residents, who are mostly women, can get their hair done, for gosh sakes?
Then I glance down at the calf-length pants my aunt is inexplicably wearing her on this warm fall day and notice that her knee-high stockings are beginning to droop. I lean over to pull them up but catch myself. I cannot come within six feet of her because of the virus. I force myself to lean back in the bench and ask the aide to straighten my aunt’s stockings, when I notice the bandages wrapped around my aunt’s knees.
“What are those?” I ask, nearly choking on my words. “Your aunt can’t get to her feet,” said the aide. “She’s been in a wheelchair since last week.” The bandages help stabilize her, the aide said. More than my aunt’s knee highs have been unraveling in recent months.
During the first outdoor visit in June, my sister, Liz, and I remarked that our aunt seemed thin. We had not seen her for four months since the virus shut the facility’s doors. “How much weight has she lost?” my sister asked. “Eight pounds by April,” the nurse manager said. My sister and I looked at each other and shrugged. That did not seem too bad.
I asked the same question again during an outdoor visit on a Wednesday in early August, when the cuffs of my aunt’s black slacks dragged on the ground. While waiting for the nurse to answer me that weekend, Aunt Jo slipped out of bed twice. It was my pink satin pajamas, she said, laughing, when my sister and spoke with her.
But it was not the pink pajamas, Liz heard, after the night nurse called her early Monday morning; it was probably the anti-depressant she was prescribed on Friday.
That night, the answer I finally got to my repeated question shocked me. In the four months since April, my aunt had lost 16 pounds—a pound a week—and a total of 24 pounds since Christmas. She was hardly alone: After a few more calls, I learned that most LTC residents were losing weight as the social isolation imposed by COVID-19 accelerated its toll.
The doctor prescribed Megace to help her gain back weight, and for three months, the wonder drug helped her gain the pound a week she had lost. In the process, however, Megace, or my aunt’s dementia—or a combination of the two—also took away her ability to speak, to stand, to walk, and to sit on the toilet on her own.
Those are the four signs of end-stage dementia, I read later. I could not sleep that night, but not because the information upset me. The picture of my aunt sitting silent and disconnected in her wheelchair was enough to keep me awake for the rest of the night.
(N.B.: Just before Thanksgiving, Aunt Jo stopped taking Megace, because continued use has extremely negative side effects. That triggered the weight loss/gain rollercoaster to start up again—only it headed in the other direction. She began losing a pound a week, but with an inexplicably beneficial effect as the drug wore off: A few weeks after stopping Megace, Aunt Jo grew more alert and regained her speech.)
What experience has your loved one had with Megace? Did the drug help them? Were they able to maintain a healthy weight?