With a twinge of furrowed brow Mom asks “So when are they going to be done at the gym?”
“What do you mean?”
“Well, when are they going to be done with the renovations?” she ponders.
“Mama, the gym isn’t closed for renovations. A lot of businesses are closed right now because of the virus that’s going around.”
Her brow and nose scrunch up severely. “Oh. But what does that have to do with it being closed? I don’t get it.”
Variations of this conversation have taken place up to four or five times a day since mid-March.
I know it’s often best to go along with whatever reality someone with dementia is experiencing, but this time I can’t do it. I haven’t been able to come up with a lie that both eases her questions and keeps her up to code with what’s going on. This is a matter of safety and I need her to understand the basics, just enough so she can keep safe, but not enough to become upset on a regular basis. Easier said than done.
You know that feeling you’ve been getting in the morning recently? The one that steeps between sleep and a new day? With the rubbing of your eyes and a yawn you might peek out of the blinds. Everything looks the same. The sun came up again. The wind makes the yard trees nod. A squirrel hops along the top of a fence.
As your body stretches and mind wakes you check your phone or turn on the television and re-discover the truth. The world is not, in fact, the same. You are quarantined at home. This is apocalypse-lite.
This is not the reality for Mom. Within the same day she’ll slip between any number of realms of misunderstanding.
In some aspects, being quarantined isn’t a whole lot different than our pre-pandemic normal. We often spend hours together at home before and after a shift at my main place of work. I do all of my parental duties like usual. We wallow in the comfort of routine.
Before COVID-19 my small freedoms could be found in the ability to run errands at will, grab a cup of coffee with a friend, take a yoga class once a week, and read or watch television from the cocoon of my room, though often I would be interrupted by a familiar knock on my door.
Work itself was a particularly cherished freedom. While I was able to spend time doing a profession I love, outside and working with kids, Mom would either be swimming laps or using stationary weight and cardio machines upstairs. Being the blatant extrovert, more often than not you’d see her chatting with staff and other gym patrons. Or she’d be eating whatever snacks I packed for her and the generous treats often placed in her palms by whoever happened to see her that day.
Now here we are in a state of international emergency, implored to stay home by essential workers, select government officials, and vulnerable, immunocompromised members of our communities. Mom and I honor this request to the best of our ability. She has stayed home for almost three weeks straight. Aside from my first grocery trip just before self-quarantine regulations were put in place locally, I have only run errands in public once. This included re-stocking of food items and doing a parking lot pick up at a dispensary for the CBD gummies I sometimes use to manage stress. Everything else we needed has been delivered to our house.
Despite Mom and I having previous experience with isolation, the pandemic has exasperated some of the stressors involved with dementia and caregiving. The expected symptoms of cabin fever are heightened to levels that test our patience.
From her perspective I often play the part of the bad guy. I’m bossy and unreasonable, demanding, and command her every move.
In addition to having to explain the pandemic to her multiple times a day for weeks on end, I have become a pest she can’t shake off. It is a necessary evil in order to protect her from herself, from the world.
She sticks her fingers in her mouth when she eats, sucking and licking them clean for every last morsel of flavor. Her curiosity causes her to repeatedly touch objects. She will reach deep into the belly of garbage bins to pull something out that catches her eye. Depending on how alert, or not, she is on any given day, she might forget to wash her hands after going to the bathroom. Or if she does, she may not do a very good job of it by disregarding soap or not lathering for more than a few seconds. On several occasions she has accidently and unknowingly slathered dog feces all over her hands in an attempt to get the excrement off of her shoes. In many ways she is a five-foot toddler, equally as loveable as she is frustrating.
You can imagine that the heightened sanitation and preventative measures only make my job that much harder. I’m compelled to watch her every move, chip away at the remnants of her independence.
“Don’t touch that please.”
“Mom, get your arm out of the garbage bin and then come inside so we can wash your hands.”
“I know you don’t like me very much right now, but I need you stop what you’re doing.”
“Please go sit down and work on your puzzle.”
“Don’t worry about that. I’ll take care of it.”
Just last week my best friend, her six-month-old baby, and her mom, did a porch swap with us. In exchange for handcrafted rainbow and unicorn cookies, we gave them homemade dill pickles and garlic chili oil. As they stood on the street several yards from our porch I chatted with them momentarily, relishing the sight of people I love for the first time in weeks. Mom stood squished against my side and listened, intent on being part of the action. At one point she tried to get past my grip on the half-opened screen door, stating matter-of-factly that she wanted “to see the baby.”
“No Mom. You can’t go over and see the baby right now. Because of the virus. Sorry. We have to stay right here. You can see the baby another time.”
Her scowl practically hissed.
She forgets that the capital “B” I wear isn’t for “Bitch” or “Bossy”, or even “Boss Bitch”, a moniker her and I giggle about in the moments we find dementia humor funny. The “B” represents so much more. Bold. Brackish. Barmy. Bereft. Brave. Broken. Big-hearted. Barely hanging on. Bemused. Benevolent. In general, she knows this. During the hours and weeks of the pandemic this is often not the case.
When Mom has had enough of me telling her what to do she’ll walk around the house aimlessly, muttering to herself. I know it’s really bad when she shuts herself in her room, opening and closing drawers furiously, talking shit about me as if I’m three counties away and not on the other side of a thin wall.
We have a long road ahead of us and the road will only get rougher. For us, for you, for everyone. Knowing that doesn’t make this pandemic any less or more manageable. It just is. And in that space of unbiased certainty, suspended by our inability to control life, we are asked to sit. Be still, if we can. This isn’t supposed to be easy. And if we sit still enough, close our eyes and hush our instinct to be selfish, the world might whisper wisdoms.