I’m with my Mom, sitting next to her in a crowded restaurant, and yet I feel alone. I should be warmed by her proximity, by my ability to put my arm around her shoulder and squeeze her towards me. I can swing my leg three inches to the left and our knees will bump together. But she is light years away. She is the earth and I am the moon. She is a falling star glimpsed out of the corner of my eye; I’m fervently making a wish upon that star, my mother the star.

I’m in the middle of my life with an established career, strong marriage, and healthy and active children of my own. But my Mom’s dementia has only made me realize how much I still need her. There are so many things I want to tell her, so many lessons she has yet to teach me. I think about my Mom’s life and my own, the similarities and differences, the choices we both made. We’ve always been close, I thought I knew her well. But there are so many things I’ve never asked her, so much about her I don’t know. I’m running out of time to ask her all the things.

I want to know what sorts of things she thought about and struggled with when my brother and sister and I were young. Did she feel isolated being a stay-at-home mom? With my Dad working so many hours, how did she do so much of it on her own?

I want to ask her what she remembers about being 45, the age I am now. Did she ever feel disappointed in how her life turned out? Would she have done anything differently? What made her want to take writing classes and why did she stop?

The best time of day to hear her stories is in the morning when she has energy and focus. Asking her about something that happened years ago when she was newly married, in college, or even as a child, is like turning back the clock on her disease. She transforms into a version of herself that is most familiar to me, what I think of as her true self. Her voice lifts with an almost song-like quality, she is animated and attentive. She is very funny. She has her father’s dry sense of humor, a personality trait I miss more and more with each passing day, week, month.

Alzheimer’s Disease is like a muzzle, silencing my Mom, changing her pattern of speech, the sound of her voice. It ruthlessly takes her confidence and individuality. Often I am lonely in her presence, physically close and yet emotionally separated as if the disease were a giant fire-breathing dragon sitting between us. Try as I might, I can’t see through it, around it, over it. Our conversations go in circles. But if I ask Mom a question about something that happened long ago, the dragon immediately flies away and there she is – visible and real, the version of my Mom that makes me feel most like myself. 

But some days I don’t want to go backwards, I want to live in today. Some days I can’t fight back my fears of the future. Some days, most days, all the days! I want the version of my Mom I’ve always known. I want her to be whole, intact, available and there for me –  to answer my questions and fill in my blanks. Who am I without her guidance and insight, without her love? I won’t be okay unless she tells me so.

Mom is quiet as conversations buzz all around her in the busy restaurant where we’ve gathered to celebrate family birthdays. All her grandchildren are here and she is happy, content to be near them, to watch them. I’m siting on one side of her and my nephew is on her other side. I listen as they talk about his high school basketball team. I’ve noticed my oldest nephew always makes an effort to be near Mom and talk with her – so kind and sensitive for a kid just turning 16. I’m sure he misses the grandmother she once was to him, but he embraces who she is now and loves her just the same.

Mom paces the room while holding her youngest granddaughter, disappearing inside the world that is her and the baby. She murmurs in the baby’s ear, hums a tune, talks to her about who knows what? It doesn’t matter. While she’s holding the baby, Mom doesn’t have to explain herself, find the right words, or keep up with the conversation. She can play the role of world’s best grandmother despite her memory loss.

I watch my 8-year-old daughter hug my Mom and begin telling her a long, rambling story that doesn’t make much sense. But my Mom laughs long and hard at the story. They share a perfect moment. The kids seem to instinctively know how to love my Mom now. They love her without expectations, without wanting something from her in return.

I want the mother I’ve always known – the one that has loved me unfailingly and unconditionally all my life, the one that celebrates and soothes me like no one else can. She is here with me, but I have to find new ways to reach her. I have to meet her where she is, not where I want her to be.

I’m watching the children and studying their ways, hoping I can give my Mom the unselfish love she’s always shown me. I’m here with her, sitting close, waiting for the next little sign that she is here, too.