Pandemic, Party of Two

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.”

I sigh.

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.

A Single Parent, Childless

This is not what I daydreamed parenthood to be. I pack snacks, spend hours a day making meals, do dishes and laundry, help her get dressed, make sure she remembers to feed the dog she committed to, clean the house, organize her room, make house repairs, pay bills, take her to appointments, bring her with me to work so she’s not unsupervised for too long, make sure she exercises several times a week, buy presents on her behalf for the holidays, and everything else in between.

In a sense these responsibilities were not a surprise. I have always been independent, hardworking, and have made a living working with kids for over twenty years. I had an early start, with my first gig being a sitter for the neighbor across the street. I was eleven. Looking back it seems slightly terrifying to entrust someone so young to such a high burden of safety, but at least my parents were always across the street and would periodically check in with a phone call periodically.

Like many others, I pictured my adult self with a partner, sharing the load and doting over a child that was perfect to no one but us.

I’m not ignorant. I knew that becoming a single parent is a reality. The thing is, no where in my highly active imagination was there a world in which I shouldered all that a single parent does, but without a kid.

You see, my child is sixty-nine years old. I am the parent of my mother.

Our role reversal began in early 2017. I had returned home from a solo, six-and-a-half-month road trip around the United States and quickly realized that she needed some help.

After a few tests it was determined that she has early onset Alzheimer’s. I didn’t know this until her diagnosis, but apparently someone is labeled as having this disease when there is no other explanation for their dementia. Like most other kinds of symptoms, (similarly to how a cough or an itch are symptoms, not diseases), dementia can be a response to varying health issues. Some examples are traumatic brain injury, Parkinson’s disease, Huntington’s disease, nutritional deficiencies, brain tumors, old age, or any number of other concerning health problems. A few instances of dementia are reversible, depending on the root cause. Alzheimer’s is not.

Knowing what I know now it’s incredibly easy to see specific moments and changes for what they were: smoke signals. Hindsight is a perspective with no value in the past, but worth its weight in introspection.

The earliest incident of any change I can recall is from autumn of 2012. I was dating my roommate at the time, who was tall and always sported some version of a short, dark beard. Mom is very outgoing, the kind of extrovert who can flirt in a casual way without it meaning anything. So when, after meeting him several times, she would stretch out her tiny frame and put a curious hand on his beard, I was annoyed.

“What’s this?” she’d chortle, briefly fondling the facial hair like it was a page in one of those children’s texture discovery books.

“Mom. Leave his beard alone,” I’d say, trying to balance between playing it cool and being overtly embarrassed.

“When did you grow a beard?” she questioned him.

My boyfriend would eye me with a perplexed smile as he explained, yet again, that he always had a beard.

“Really?” she laughed, thinking we were joking.

“Really Mom,” I would sigh, not amused by her extrovert shenanigans.

There were other moments too that stand out. I have memories of her coming behind the front desk of my work to help herself to something in a cupboard, or walking into my office to sit on my lap like I was Santa Claus, thinking nothing of my coworkers around us.

In October of 2014 I had a first real inkling that something serious might be going on. I had purchased tickets to the “Jimi Hendrix Experience” at our local event center as a birthday gift for Mom. At the time I was housesitting one town over from her. I requested that she meet me so that I could drive us to dinner and then the show. Despite having the address and me walking through the instructions over the phone, she couldn’t find me. I ended up hopping in the car and locating her so she could follow me back to the house.

It was close to midnight by the time the show was over and we made it back to her car. As she was about to head home she asked for directions. I reiterated the instructions, but she didn’t seem to understand. I climbed back into my car and told her to follow me to the nearest freeway entrance. By chance, the on ramp was being worked on. Construction equipment and flood lights blocked our entrance. I turned us around and took her to the old highway backroad that connects the two towns, pulling over to say goodbye.

She still didn’t understand how to get back, even though now we were five miles from her front door.

We repeated this strange game of follow the leader once or twice more until I veered the car to the shoulder a last time. I was becoming distraught, confused and irritated that she was acting so out of sorts. At this point we were just about a mile away from her house. I motioned toward the quiet, dark freeway ramp and told her to get on it.

“Get on it?” she questioned, unsure of where it might lead.

“YES Mom. Get on the on-ramp. You’re almost home,” I strained.

“And then what?”

“GO HOME. Mom, seriously, how do you not know where to go? Just go home. I can’t do this anymore,” I pleaded, trying to keep back the tears that were forming.

Finally she crossed the road onto the ramp, painfully slowly driving up until she disappeared out of sight. She couldn’t hear me as I yelled, “Goooo! Speed up! What the hell are you doing?”

I lost it.

On the short car ride back to my housesitting gig I called my sister. As siblings invariably do, she could tell right away something was wrong.

“Lauren, what happened? Tell me. Is everything okay?”

I didn’t know it fully yet, but it was the start of something that is very not okay. Mom didn’t drive at night again and things seemed mostly alright for a while. Though, she was developing slowly into someone a bit more childlike and needy. The tone of her voice de-evolved. She began thinking it was cute to call me “Mommy” and use a whiny voice sometimes when speaking, especially if I was out of town for any reason. I hated it.

When I left for the forty-eight state road trip in mid-2016 part of me knew it might be my last hurrah for a long time. I soaked up every second of time on the road, calling home every few days or during unbearably monotone stretches of empty highways, but I knew. Life might be much different when I returned to California.

The instinct was right. Shortly after I jumped back into “normal” life I noticed that Mom was having trouble driving. She’s generally a careful driver, but parking in particular started to give her away. Keeping the vehicle parallel between lines, parking in her steep driveway, or backing up out of a spot was an increasingly erratic drama to witness. Finally, after a small fender bender in the parking lot of my work, and noticing a couple dents in her garage door and inside the garage, I held my breath and took charge.

“Mom, while we wait to have your car fixed, why don’t I give you a ride to and from your house?”

I work at a health club where she’s been a member for longer than I’ve been an employee. It made sense for us to carpool anyway, but to be honest, at first I wasn’t thrilled about the added daily errand.

She surprised me by agreeing right away. I had anticipated the opposite reaction, her fretting for days and insisting on her perfectly fine driving capabilities, thank you very much.

She hasn’t driven a day since.

It’s been three years since I switched from the title of daughter to mother. Every aspect of my life has been affected by being a caregiver. I am thirty-two and nowhere close to having a family of my own. I don’t really date, often going months or a year without romantic companionship of any sort. My work schedule has been reduced, mostly so that I avoid overburdening myself with responsibilities. I have anxiety, most recently panic attacks from time to time that mimic the chest pains of a heart attack. I don’t hike every Sunday like I used to. Road trips and plans abroad have slowed to a trickle. My freedom to live my life at will is in a vice.

This is infinitely the hardest thing I have experienced in my life. And there’s no telling where the finish line is. It often feels like someone moves the line closer, then back, taunting me. I waver between wanting it to be over and digging my heels in.

I do it for her. I do it for all of the years she tried her best to guide me through life, even when she didn’t know the answers or chose a hurtful approach. I do it for the handful of teenage years she wouldn’t give up on me when I struggled with depression. I was so locked inside myself, unable to share my thoughts or fears or pain, but she kept trying to reach into the dark and pull me out. I do it for the innumerable hours she spent feeding and bathing me as a kid, helping me with homework, arranging check ups and sport team sign ups and play dates. I do it because I would hope someone would do the same for me. I do it because I love her.