hand-in-hand

Dementia and COVID-19: A Granddaughter’s Story

Eleventh grade was a bit of a whirlwind. Accumulating homework assignments, standardized testing, a jam-packed extracurricular schedule, and anticipation for college applications pushed me further and further into a bubble. In the race for “academic excellence,” I lost touch with the outside world. That bubble, however, quickly burst in the second semester.

For decades, my grandma lived alone. This is not to say she was lonely, however. In fact, she maintained a rather active social life; she befriended local musicians, dazzled folks with her dancing, and graced almost everyone she walked by with a warm hello.

Time, though, was not nearly as kind as my grandma. In her mid-to-late 70s, she began showing signs of cognitive impairment. Fast forward to her early 80’s–relatively harmless forgetfulness had evolved into life-altering symptoms. No longer could she maintain her decades-long  independence as lapses in memory and general confusion prevented her from driving or maintaining a schedule and, soon thereafter, arranging and using public transportation, eating enough, and cleaning up after herself.

By this point, my family had taken on a more significant role in her care. We created more visual cues, such as dry erase boards with her schedule, important contact information, and favorite TV channels; we installed cameras so we could look out for her while we lived on the other side of town; and we arranged a full week of activity—visitors, trips to a senior center or adult day center, and outings with family—and transportation. 

Then came the close of 11th grade and her heartbreaking outbursts of anxiety, loneliness, and delusions. Suddenly, my father was spending hours upon hours watching her on film and talking to her on the phone, begging her to eat breakfast, talking her through finding her Lyft ride, reassuring her that her family was safe, or simply chatting with her about the Indians. She still had fun during the week, but ultimately she was feeling scared and alone. And after a few (fortunately minor) falls and late nights knocking on neighbors’ doors to ask about late loved ones, it was time for a safer living situation.

So seven months ago, we drove up to her condo, packed up her clothing and bathroom essentials, and brought her back to our house. For a while, it didn’t feel like a dramatic shift from the normal. Right before school, my sister, grandma, and I ate breakfast, and we helped her get on the bus to go to a new adult day program. When she came home, we were all tired from 7 hours chock-full of stimulation. We chatted about our days, ate dinner together, and wrapped up the evening.

But then COVID-19 hit. Meals, clothing changes, styling hair, and showers were only the beginning of my caregiving journey. When my grandma lost access to her adult day program, she lost out her major outlet for social connection and cognitive activity. Worse yet, when I was spending most hours of the day with her, I realized that her strength and energy level had gone down the drain.

I had to get creative, and I had to commit to her. I love her too much to let her slip.

I’ve had the best time getting to know my grandma in new ways. Talking about her high school and young-adult experiences has inspired my favorite daily traditions with her: swinging the softball bat out in the yard, hitting a beach ball back and forth, and walking around the neighborhood, hand-in-hand. I love working with her on a jig-saw-puzzle, guessing what animal  my sister or she is thinking of that starts with the letter “b”, singing along to “You Make Me Feel So Young” as she copies my chair leg raises, and laughing with my mom and her about Steve Harvey’s antics on Family Feud. It’s not always happy-go-lucky, but I can’t help but be grateful for the vibrant color she’s introduced into my life.

I hate thinking about leaving her this fall.

I can hardly handle her visiting my uncle, aunt, and cousins for a few days every other week. She’s my best friend. She deserves all the fun and stimulation in the world. I hate that I won’t be there for her in the way I am now. But I know my family will step up to the plate.

At the height of my grandma’s anxiety while she was still living alone, my father, at the expense of his work and his own well-being, spent hours upon hours ensuring hers. Today, he sleeps nearby to make sure she doesn’t wander off in the night, washes her clothes, gets her up and feeds her breakfast when I sleep in (which happens too often), gives her puzzles and helps her onto the stationary bike when I get caught up in work, and so much more. My sister often joins us on walks, and my mother often makes dinner and helps her get settled with the TV before bed. 

Hopefully, by the time I head off to college, it will be safe for my grandma to go out and socialize with other older adults. In the meantime, though, I’m going to cherish every moment I have with her.

About the Author 
Olivia Wenzel is a rising freshman at Harvard University who is planning on studying computer science. Inspired by her time as a Visiting Researcher at the Cleveland Clinic and her caregiving experience, she founded AltruTec, LLC. Through technology, she aims to help older adults, especially those with dementia, remain physically, cognitively, and socially active.

OPEN CALL FOR AUTHORS, WRITERS, CAREGIVERS

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