I just got home from school and my mom left a note that I was going to be home by myself because my grandmother was in the hospital following a stroke. I watched her in a drab-colored patient gown with all life drained from her body. They allowed me in and I held her hand, to watch the confusion wash over her face as she didn’t remember who I was. It was devastating.
After she was discharged home, my mom and I became her caregivers. I helped her with meals, socialization, and making sure that she was comfortable. My tasks weren’t that overwhelming to start, but medical interpretation and translation needs became increasingly apparent as I grew older.
My grandmother only spoke Vietnamese, so whenever my mom and I brought her to an appointment or a home health nurse was coming over, someone had to be home. When her Meals on Wheels driver came by in the mornings, I usually picked it up because my mom was already at work. They were always prompt, generally, 8 am on the dot.
One morning I forgot about this ritual and our home health aide came over to feed my grandmother, and noticed that there wasn’t a Meals on Wheels container in the fridge. My face went crimson. I paddled together some rice, meat, and vegetables, and a glass of water for her, and sat on the couch to reflect.
I felt horrible. What kind of granddaughter was I? My grandmother’s dementia got worse over time and it was difficult to watch this deterioration, but I learned to reframe this challenge. My grandmother was seeing the world in a different way. A research article I read recently from Texas State University describes dementia more eloquently: a “shift in the way we experience the world.”
Being my grandmother’s caregiver taught me a lot about dementia and Alzheimer’s. There’s a lot of derogatory and negatively-charged words around the topic when there is a lot of good that comes from it.
My grandmother came to the United States in 1992, with limited bandwidth to learn English. She was in survival mode. I was born in 1998, and I didn’t get to witness her adult years, and I can’t remember what she was like, pre-dementia because it was too long ago. However, her dementia allowed me to meet my grandmother again as a different person.
I met my grandmother: the restauranteur. I met my grandmother: the baker. I met my grandmother: the woman who would save me from a flood occurring in our own house. My grandmother believed that there was a flood in our house and she quickly scooted her walker in front of me to absorb the aqueous tempest. I practiced my backstroke on our wooden floors to show her I wasn’t scared and to help her remain calm. We were a great team, two peas in a pod.
One thing I’ve learned during my time of caregiving is that dementia is not the disease to be cured. It’s us, members of society that need to be cured. The way that we respond to dementia is what needs to be cured. Give your loved ones a space to express their reality, and in return, nurture their truth and participate in it.