COVID hijacked my mom's brain and didn't want to give it back
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On July 2, my mother called me from her retirement home. Her words were rushed. "I can't stand this isolation much longer," she said, "I've just got to get out of here."
She'd been in isolation since March 9 at a Salt Lake City assisted living center with a view of the Wasatch Mountains. They'd kept the case count to zero, but the toll on her spirits was obvious.
She was bored. We all were.
We spoke every day on the telephone, comparing the monotony of our lives and laughing about the absurdity of starting yet another puzzle. I was working remotely, but I made the time to talk with her for at least an hour a day.
"Do you want to come live with me?" I asked, knowing we had neither the space nor the bandwidth for an 83-year-old widow. She was sharp and self-sufficient, but my daughter and her boyfriend were already living with us. And we already were cramped in our apartment.
"No." she answered abruptly. "I'm not going to ruin my kids' lives."
On July 4, while the crack, crack, pop, pop of boredom fireworks went off outside my windows, my mother called again. "There is a monkey on my bed, Sheila," she said, hysterically. "It's the strangest thing. He's sitting right there on the edge, looking back at me."
My mother was dehydrated, delusional and near death. She'd likely had COVID-19 for three days.
It was a holiday. When we finally reached someone at the assisted living facility, a nurse finally agreed to gown up and go into her room. "What are your wishes for your mother's care?" she asked my sister, her voice quivering. "She is very, very sick."
My mother never developed a deep cough. She never developed a temperature above 99 degrees. But the damage inflicted upon her neurological system was like a freight train tearing through flimsy cardboard cutouts.
She hallucinated. On Facetime, she mistook me for my dog. She hallucinated people coming into her room and stealing her jewelry. She'd point to raised white bumps along her palms and say, "There, there, there! That's the virus! Do you see it?!"
In the early months of the pandemic, doctors focused on the respiratory impact of COVID-19 and treating lung and circulatory damage. But evidence for neurological effects was mounting. Some people hospitalized with COVID-19 experienced confusion, disorientation and agitation. Other patients suffered strokes, brain hemorrhage and memory loss. Still other patients reported unexplained depression and anxiety, even after they'd finally recovered and tested negative for the virus.
My mother was rushed to the emergency room (an event she doesn't remember), but she was released within 48 hours. Her oxygen levels were fine. She had a bladder infection and was treated with antibiotics. She returned home to recover, and my brother and sister sat with her for three days, (against the retirement home policy) wearing protective gear and lifting liquid to her lips.
I drove from Oregon to Salt Lake City to help in her recovery. By now, it was late July and blistering hot, but we were able to sit outside (six feet apart) and visit. Some days, she walked on her own. Other days, she wobbled out pushing her walker, disoriented and disgusted with her slow recovery.
"It didn't kill me. But it should have!" she told me, spooning a root beer float to her mouth.
She'd lost 10 pounds. Her eyes had purple rings underneath them. Even though she'd been told she now had antibodies to the virus, she said, "It's going to be the thing that gets me in the end."
And then, her sentences would fray, abruptly veering into memories or gibberish. She'd catch herself off course and would shake her head, discouraged by the misfiring of her brain. She wanted to go back inside where it was cool. I couldn't go with her.
The most pressing question for many doctors is why COVID-19 affects the brain. Is it a direct viral infection of the central nervous system, or a reaction to systemic inflammation in the major organs? Or something else? Regardless, there's no treatment other than rest, liquids and time for long haulers – those with prolonged symptoms who are experiencing confusion and brain fog.
Depression and anxiety are treated the same way depression and anxiety is treated routinely — talk therapy and medication. But not all people with neurological symptoms go the ER. Young people who have acute changes in mental status but lack the telltale cough and fever might not ever disclose their disorder to family members or their doctors.
"Neurological problems are not rare for COVID-19 patients," says Dr. Jim Polo, executive medical director at Regence. "The best estimate is that 30% to 50% of hospitalized patients have neurological issues."
Their symptoms include weakness, confusion, eye movement problems, delirium, and stroke. Brain fog, anxiety and depression are so common some long-hauler groups have specific meetings focused on the neurological implications of recovery.
My mother finally agreed to move to a smaller retirement community with soaring windows, activities every day and a floor to ceiling fish tank with dozens of multi-colored fish. I don't know whether her recent improvement has to do with her new digs or whether her body is finally healing from the damage. Her sentences run in straight lines again. She laughs sometimes, especially when she makes a joke.
Still, I wonder how much of the precious brain matter that she'll need as she ages was damaged by COVID-19. And how many others are injured without even knowing it.
Dr. Jim Polo talks about the neurological implications of COVID-19: https://beyondwellsheilahamilton.libsyn.com/dr-polo-neurological-and-covid
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