“Have you decided on a name?”
The thing was, we named her the minute she was born. I will never forget the moment the two most important women in my life met for the first time.
But, days later, an email from my mom’s best friend was a painful reminder about the grandmother my daughter would come to know.
“Have you decided on a name? Your mom said you were still deciding.”
Right away, I knew my mom was trying to protect herself. She could not remember the name of her granddaughter that she met just days before.
Reading that email—holding my little girl, hormones wild, breast milk leaking—I wept. I wept and wept and wept.
I wept because I needed to face what I had known for a long time. The impossible disease, the one that is supposed to take old people in nursing homes, the one that affects other families, I suddenly knew its name. No one was saying it, but Alzheimer’s joined our family a while ago. It is taking my mom bit by bit, piece by piece, day by day. It had already changed everything but now I was a mother who was losing my own mother at a time when I needed her more than ever before.
It started years ago. She would forget dates, she would repeat stories. We all assumed it was normal aging. My dad’s plan was to simplify. She would retire earlier than they thought. After 20 years of teaching kindergarten, it was suddenly hard for my mom to keep up. “All that new technology,” she’d say. “The kids are rowdier than ever before.” “We are going to travel more.”
Retirement came and the struggles continued. Family roles slowly shifted; my dad took over finances, making plans, communicating with my brother and I. My mom was no longer the planner, the doer, the talker—she was the quiet anxious participant that left us all missing her immensely even when she was still in the room. Why had my mom become so withdrawn?
I kept thinking I could fix her. A yoga class. Her favorite meal. A girls shopping trip.
I so wanted to name her struggle. Is this grief? Anxiety? Depression?
Nothing seemed like the right explanation.
Three years ago, when I had my son, my need for my mom became even deeper. I wanted her to come and rescue me from the perils of new motherhood. But she kept a distance. So, my husband and I figured it out. We managed like all new parents who don’t have family support nearby. We took turns sleeping, we got take-out, we called friends. Our apartment was messy. I grew a sense of empowerment. I didn’t need any help.
Quickly I realized that what I longed for from my mom was not her ability to clean the sheets; I longed for her to know my son. I wanted to feel the grace that comes in sharing motherhood with my own mother. Why didn’t she want to spend more time with him?
When my friends would ask why mom didn’t visit, I would always answer the same.
“My mom has a hard time.”
“Oh tell me about it!” (Followed by a ‘silly ‘ol mom story.)
Not like that, I would think. Like this: my mom tells my son she will play trains with him. Then, she gets up for a drink and forgets. I listen to him call to her. Then I watch her realize she forgot about playing trains. He gets upset. I fill with sadness and frustration and anger.
I can’t decide who to go hug first, the toddler or my mom.
But I would not say that to my friends. I couldn’t explain.
Naming my mom’s struggle became my white whale. I read. I googled. I went to therapy and support groups. I wrote physicians, called specialists, insisted on testing, cornered neurologists at birthday parties. Reluctantly, my dad agreed to all of this because my mom's behavior became too troubling to ignore. The irony of it all was that I learned this tenacity from my mom. Every time I hit a dead end I heard her voice from my youth: “Don’t take no for an answer.” “Call again.” “That doesn’t make sense, ask more questions.”
The email about my daughter's name ignited my need for answers.
Finally, we met the right doctor, with the right questions and the right tests. The morning of the diagnosis they sent my mom into another room to ‘take vitals’ – an excuse to separate her from us. As my dad, brother, and I sat in the doctor's office, and she named the disease, I felt painful, heartbroken relief. Finally. A name.
Now instead of, “My mom has a hard time” I say, “My mom has Alzheimer’s disease.” Naming this disease means naming my mom’s struggle. This isn’t about stress or coping. It’s about a 67 year-old brilliant and graceful woman who is fighting the theft of her beautiful mind. And the name for my feeling? Grief. Tiny slices of grief that cut to my heart every time she says or does something that my ‘old mom’ would not have said or done. Tiny reminders that I am losing her everyday.
Being a mother while your mother has Alzheimer’s is heart-wrenching. Yet, the intense love I have for my children serves as a reminder of how much my mom loves me. I know, if she could, she would do anything for me. Through her incredible nurturing, she gave me the tools and the faith to do this: both tasks.
I will mother my children using her shining example.
I will advocate for her and honor her through this disease.
I will do both, in her name.
In order to protect the privacy of the author's incredible and strong mother, she has chosen to submit anonymously. The author works in Higher Education in the northeast and lives with her patient husband and two beautiful children. She enjoys running the first half of a marathon, splurging on fancy cheese, talking about yoga more than she actually does it, and praying for grace as a reluctant member of the 'sandwich generation' If this essay stuck any chords -- she would love to hear from you at firstname.lastname@example.org
Image by Laurie Carrozzino.