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Your Alzheimer Story

Molly Rubin, mother passed away from Alzheimer’s

I hold the date that I gave birth to my twins and the date that my husband and I brought home our third child from Ethiopia as the two most momentous days in my life. Sadly, with hindsight, I also see them as markers with which I can trace the trajectory of my mom’s descent into Alzheimer’s Disease.

When I was in my twenties and my mom in her fifties, I ended up on bed rest for the last three months of my pregnancy. For the first time in years, I found myself yearning for my mother. Not only did I need her help while I was bedridden but I longed for her reassurance and her guidance. I wanted her to share her experiences with me as a mother of three, who had blazed a progressive parenting path very different than that of her own mother. Yet when my mom arrived to help, I quickly became frustrated and worse, an inchoate fear began to gnaw at me. If only I had understood at the time the insidious nature of Alzheimer’s, how it first quietly chips away at what is essential about a loved one. Suddenly, she seemed incapable of completing ordinary tasks. One morning after waiting for what felt like an eternity for breakfast, she appeared in my room without a plate of food. She proudly announced that she had organized my entire fridge despite promising to return over an hour before with a simple omelet for her bedridden and very pregnant daughter. She was late to the hospital the day my daughter and my son, her first grand children, were born. My mom, who had spent many weeks caring for my siblings and me solo while my father traveled for work, was unable to tolerate my infants’ cries. This woman, who I prided all my life for her honesty and empathy, who herself had struggled when she lost her father when I was an infant, normally would have acknowledged and reassured me about how challenging parenting could be. Now, when I confided in her that I felt depressed and insecure as a new mother, she changed the subject and tried to hang up the phone.

Despite these initial concerns about my mother, my husband and I moved to Atlanta to be closer to my parents and to give our young son and daughter the opportunity to get to know their grandparents. However, my mom just continued to disappoint and confound me as she failed to be the mother and grandmother I had assumed she would be. She was constantly late to play dates with the kids and even would forget them all together. Even more hurtful was that this woman, who had actively tried, in contrast to her own mother, to encourage independence in her own children, would constantly second guess every decision I made as a new parent. I felt paralyzed by fear, anger, and sadness. When my husband completed his medical training, I encouraged him to look elsewhere for a job as I resigned myself to the notion that my mother was not the competent, empathic, and savvy mom I had once romanticized her to be. We moved to Los Angeles.

Once our lives settled in Los Angeles, we decided to add to our family by adopting a daughter from Ethiopia. My mother, the same woman who had marched on Washington inspired by the words of Dr. Martin Luther King, who normally would have embraced the idea of a multiracial family, seemed aloof. Though we once spoke everyday by phone, my mom now never called. Shortly after receiving the referral of our beautiful baby daughter, my father called to inform me that my mother had just been diagnosed with Cognitive Impairment. This was the stepping stone towards the eventual diagnosis of Alzheimer’s Disease. Finally, this undefinable dread that had been haunting me, was given a name. The diagnosis was both my worst fear for my mom and a bitter acknowledgement that indeed all these beautiful traits of my mother upon which my memory stubbornly insisted had existed. It was a disease that was dismantling the best of her. Without Alzheimer’s, she would have had the chance to evolve into an equally empathic, creative, open-minded, and competent grandmother.

As we readied ourselves for our trip to Ethiopia, I reassured myself that I was prepared this time to embark on my next parenting journey without my mom’s guidance. Yet, as I packed our bags and listened to the West African singer Mory Kante’s song “Mama,” despite not knowing the lyrics, I cried uncontrollably. Kante’s voice and the instruments captured dappled sunlight and breeze wafting through a window, his melodic tune hinted at what cannot quite be pinned down: the moment a mother and child meet for the first time. It contained all the newness, potential, and love that I have felt for each of my children and all the warmth and comfort a child should find in her mother. I longed to talk to my mom and tell her about this song. I yearned for her to be my mom again, to brush my hair away from my face with her reassuring hand and tell me from her memory about the day she met me.