My grandma had Alzheimer’s and my mom has Alzheimer’s…what does that mean for me?
As I re-read my blog previous entries, I notice how easily the words came to me and how coherent my writing sounds. These days, I struggle to find words (brain fog) amid the overwhelm of caring for children (including a newly minted teenager?!) and aging parents. It’s impossible to know and yet I still worry, incessantly, if my mental lapses are due to perimenopause or early indications of Alzheimer’s.
While I was growing up, my maternal grandmother, Annie, was always on the periphery of our life. She lived with my grandfather when he was alive, then she moved in with my uncle’s family and eventually she moved in with my family. Neither my sister nor I spoke mandarin well enough to converse with her. We didn’t grow up with her like our cousins did so we didn’t have a strong connection with her either. She tried her best to speak to us but it ended up mostly with her smiling and giving us a thumbs up, brightly calling us “number one!” over and over again. Annie was eventually diagnosed with Alzheimer's. Her decline began in her mind, accelerated due to lack of interaction and engagement.
My grandmother loved being helpful so she would sweep leaves in the driveway. Sometimes she even wandered into our neighbors’ driveways, diligently sweeping. We would find pieces of roast duck hidden away in her pockets, likely a habit she picked up as a child from a very poor family. I learned she worked in a factory (something to do with rubber bands, which explained why she would collect them) and was given away as a child. I am certain she endured devastating traumas during her life in Taiwan.
As her Alzheimer’s worsened, Annie started wandering - one time, she was brought home in a police car. Eventually, Annie’s body started to decline and she resembled a skeleton-like figure. She even had bed sores from laying still for so long. It was devastating for anyone to witness, especially my mother, who had a family to support (she was the breadwinner), children to care for, and limited time to spend with her mother. She gave her mother a home, her love, nourishment but her bandwidth was limited. I know she wishes she could have done more. The guilt ate away at her, she would share with me, while she stretched and did yoga by my bed.
I haven’t thought much about my grandmother until recently, since my mother’s Alzheimer’s diagnosis. COVID and the “Asian Hate” that sprung out of the disinformation campaign were direct contributors to the advancement of her cognitive decline. Like my grandmother, my mother is always kind, smiling, loving, grateful, apologetic, humble, even as she starts to slip away. It’s not just her memory, she has lost around 30 pounds even though she eats well. She has a hard time walking confidently, using buttons, and showering. For now, she still can feed herself but she no longer drives or cooks - two things she enjoyed doing for most of her life.
My mom used to drive for the American Cancer Society as a volunteer, helping cancer patients get to appointments - I never imagined we would be looking for help driving my mom to her appointments and activities. My mom used to be an excellent driver; she would even get speeding tickets and she memorized every road in her town (she was a successful and well respected realtor). My mom wasn’t the main cook in the home but she could always whip up a meal and loved going grocery shopping to find the best produce or meat. I even remember her flirting with the butcher at Safeway when I was really little and feeling angry about it on my dad’s behalf, but now I know she was just trying to get the best cuts for us.
I originally planned to write about my own personal experience after learning about my mother’s diagnosis but this has turned into a tribute for her and that’s how it should be. I can always write about myself anytime but it’s important that I make the space to talk about my mom. I’m currently grieving the mom I wish I had (she didn’t exist) and the mom I had (she did her best). I know my mom just wants to know that my sister and I are ok in life and that she doesn’t have to worry anymore. A long time ago, we asked her what she wanted us to do when she passes and she said that we had to cry (wail) very very loudly. It was an uncharacteristic request! I believe this is a cultural ritual that helps the departed’s spirit smoothly find its way to the afterlife (and prevents their soul from becoming a ghost, according to Google).
Growing up, my mother had a 12 oz capacity but I needed more of a 24 oz Big Gulp mom. I heard this metaphor in a podcase once and it changed my whole view of my mom. I realized it wasn’t a personal affront that she wasn’t there for me in the ways I needed her. She did what she could but she had limited capacity - I’m sure she wanted to do more, and that is enough for me. Just knowing that gave me great ease and peace. I’m grateful for the work I did in therapy and then the awkward and meaningful discussions I had with my mom and sister. I’m so lucky those conversations happened when my mom was still lucid and I am so incredibly grateful that I didn’t make her feel bad about it. I didn’t need to hurt her to heal the child that had been hurt. I just needed to let her know, that was enough. It took years but I released that pain, resentment so now I can grieve the human she was.
