Amara, you penned a post for our blog in May of 2022. Can you talk about what has changed with your mom since then?
I’ll be honest. I’m heartbroken. The last few months have been especially difficult. Lately, I find myself grappling with so many emotions: guilt, fear, anxiety and sadness.
The progression of Alzheimer’s is like a low burning flame. Once the flame grows into a raging fire, everything around it gets engulfed and destroyed quickly. Since I wrote that blog [in 2022], my mom has declined considerably. Two years ago, my mother was living at home with my dad, her main caregiver. She was playing piano multiple times a day and was also able to walk without assistance. Even though she was in the moderate stage, the disease was leading her to have regular angry outbursts. My elderly father was struggling to provide the care she needed. He was cooking every meal and taking care of her hygiene, all of which was a big challenge.
I just returned from visiting my mother in California in April, and she is now bed-bound at a nursing home. She suffered a complication before Christmas, which ultimately landed her in skilled nursing.
She doesn’t recognize me at all anymore. But I am able to still see glimpses of her. During this visit, I sang some of her favorite hymns and for a few seconds she danced with her shoulders. At one point she tried to sing along. She also smiles in some rare moments. I will always take what I can get.
Receiving an Alzheimer’s diagnosis in a family is never easy. What was receiving that news like for you?
In 2019, I was slapped in the face with the reality that my mom undeniably had dementia when I was on a trip to South Korea with my mom and dad. I’ll never forget exactly where I was and what I was eating when my mom asked, “Who are your parents?” I was inconsolable. Crushed. I had been in denial up to that point.
We finally received an official diagnosis at UC Irvine in 2021. It had a sobering effect on me. Particularly when the doctor showed me my mom’s brain scans and the locations of the dark spots where her brain was essentially dying off. It triggered me to start planning for the future rather than being paralyzed by my grief. I’m relieved we got most of my mom’s legal documents in order because it will be one less decision to face, when the time comes.
You’ve spoken about the challenges/barriers that your family has faced in finding Korean resources and care facilities? Can you talk about those challenges?
There are so many layers to the difficulties that immigrant families face when navigating Alzheimer's. Firstly, there are cultural barriers. It was challenging to convince my dad to put my mother in a home. Traditionally, elderly Koreans often move in with their adult children. Family always takes care of family. No matter the sacrifice. But I think that mindset is evolving. There should be no shame in placing a loved one in a home to help the non-ailing partner survive and hopefully thrive. With the progression of Alzheimer's, I have witnessed how hard it is to properly care for the person living with the disease. Oftentimes, it becomes dangerous for the caregiver. Then there is the language barrier. My mother lost all of her English language skills and reverted to her mother tongue during the course of the disease. I was able to find a handful of Korean-speaking facilities near my parents, but to be honest, I was really unhappy with the care they provided. Our choices were limited. Now that my mother is in an advanced state, I'm focused on finding caregivers for her who are passionate about what they do.