What It’s Like to Be a Caretaker for Someone Who Has No Idea Coronavirus Exists
Coronavirus makes life more complicated for people who are already facing difficult challenges—and those who take care of them.
I am the youngest daughter in my family, but I had the shared responsibility of taking care of my older sibling for nearly my entire life. Simone, who is now 30, was diagnosed as a toddler with an intellectual disability, severe autism, and intermittent explosive disorder. (That’s us in the photo, she’s on the right.) Simone is at high risk for catching coronavirus because she can’t protect herself and her condition creates a barrier for communicating.
I can’t begin to explain to her the meaning of a highly contagious virus of how to prevent catching it—Simone doesn’t comprehend that she needs to look both ways before crossing the street or be quiet in a crowded movie theater. So, how could she possibly grasp the idea of this new disease that’s shutting the world down?
According to the Disability and Health Journal, people with intellectual and developmental disabilities from the ages of 18 to 74 are nearly twice as likely to die from COVID-19, than any other demographic. In all honesty, before the pandemic, it was challenging for my mother, older sister, Lauren, and I to take care of Simone, who often communicates nonverbally, throws tantrums, and needs care around the clock. Coronavirus has added another layer of difficulty in protecting Simone and giving her a good quality of life.
An added challenge
One of the major factors for the higher rate of death from COVID-19 among intellectually and developmentally disabled people is that they are more likely to have pre-existing conditions, which often lead to more severe illnesses. Unfortunately, my sister falls into this category, too. Several years ago, Simone came down with extremely painful blisters all over her body. Sadly, she was diagnosed with a rare autoimmune disease named Pemphigus Vulgaris. Simone is currently in remission, but at any point in time, her illness could rear its ugly head. The medicine for the treatment suppresses her immune system leaving her vulnerable to viruses, including COVID-19. It’s enough to make my family and me antsy about taking my sister in public during a crazy time like this. However, I know we aren’t alone. We all can see how much the coronavirus is costing the world its stability and sanity.
It’s easier to take care of Simone from home
When it comes to social distancing in crowds, Simone can’t do it. Period. My sister often bumps into people on the sidewalk or gets too close to others standing in line, which is why in the pandemic-world we’re living in, having Simone spend more time indoors and away from the public is the most effective way of protecting her. When she’s in our house, there are no worries about her getting too close to strangers who could be infected. Although it can be difficult for Simone to stay in one place, one thing’s for sure, she’s much safer that way. The biggest downfall of her being in the house more is that she needs more activity. Weekly Simone and I play brain games when I swing by her room to keep her company.
Adapting to changing circumstances
One day back in March, a letter came in the mail from Simone’s day program explaining the organization was shutting down until further notice, due to coronavirus. We weren’t surprised, but it didn’t stop the feeling of unpredictability about how our lives would be when my sister would be pulled away from her normal routine. Simone has an independent personality and becomes exceedingly irritated when she feels she can’t make decisions for herself.
Now, Simone typically wakes up around 8:30, then one of my family members or me makes her breakfast. From there, she normally fills her days with various activities like creating art, listening to music, dancing, or watching cartoons on TV. While I am working from home, I can easily take a break to calm her from a tantrum, fix a meal, or simply check in on her. There is still no word on when Simone’s program will start again. Fortunately, I have mastered the 13 golden rules for working from home and am able to adapt my schedule to my sister’s personal needs.
Keeping her hands clean
Simone can’t help but touch her face; when she is frustrated, she usually puts both hands on her lips for comfort and she doesn’t know that she needs to avoid touching her eyes and mouth. Yet there are moments where Simone refuses to scrub her hands with soap and water, which is terrible because there are 15 diseases you can prevent just by washing your hands. When she does refuse, hand sanitizer is the go-to for keeping her hands clean. A large bottle of sanitizer stays on the kitchen counter and when I take Simone outdoors for a walk or even a quick run to a drive-through restaurant, I keep a bottle ready to go in my purse for quick cleaning. Whenever she eats, I place a pea-size amount of sanitizer into her palm and instruct her to rub her hands together. It’s a simple way to stop her from contracting a dangerous disease.
The first time Simone wore a mask, she took it off. It took some adjusting, but I’m happy now that she doesn’t fight when the mask is being placed on her face and she’ll leave it on for a few hours. Before my sister leaves the house, I make sure her mask is completely covering her nose and mouth and is placed firmly to prevent it from sliding off. It’s also important for her mask to be adjusted after she eats, or when she’s moving around. I’m sure it’s not an easy thing for her to go through but Simone has learned to adapt to the new normal like the rest of the world.
Stocking up on her favorite things
I have learned how to stock up wisely, emergency or not and the one thing my sister has more than anything else in the world is art supplies. Simone is an artist who loves crayons, paper, scissors, color pencils, paint, and anything else you can pretty much think of involving creating pictures on paper. She likes to draw figures of people in a simple, cartoon-style and some of her pictures hang on the walls of her room. When she is not creating new artwork, my sister gets comfort from maintaining the order of her collection.
Keeping her entertained with music
Not only does Simone love art, but she absolutely adores music. My family and I put a smart television in her room equipped with Internet radio. The music never stops because she loves to blast fast-rhythmic music—Simone has eclectic tastes and will listen to anything from ’90s country, ’80s alternative rock, ’70s disco, to old school R&B. She loves to jump up and move along with the song. And why not? Simone has good taste in tunes and knows how to have her own party.
Spending quality time together
I spend time with Simone just helping her get through these insanely stressful and complicated days—it’s good to hang around while she is flipping through Internet radio stations and dancing. Sometimes if she’s in a bad mood, I’ll give Simone a hug to make her feel better. I’ll also ask for her advice on what color pencils I should pick for my latest drawing because she has a sharp eye for color choices. I come to Simone’s room to hang out but after a while, she starts to look at me pointing her finger towards the door. It’s her way of telling me it’s time to go. I guess, sometimes, I can still be the annoying little sister. That said, family time is one of the 12 wonderful things that will never be canceled.
For more on this developing situation, including how life might be different post-lockdown, see our comprehensive Coronavirus Guide.
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