When I realized my mother’s forgetfulness, repetitive stories and questions, and increasingly uncharacteristic behaviors were more than normal aging, I knew life would never be the same. My mind raced with frustration and fear at our suddenly uncertain future.
She was only in her mid-sixties – young and physically strong and healthy. This wasn’t supposed to happen. She had worked hard at a career she loved and this was the time for her to reap the benefits. But in a cruel turn of events, her golden years were slipping through her fingers like water through a sieve.
Mom was both witty and wise; she was outgoing, fiercely independent, and had a spunky, vibrant personality. She had mentored many young professionals over the course of her long, successful career and was loved by all who knew her. A sharp sense of humor was one of her best traits and she loved to laugh.
I can only imagine how it felt for her – to be trapped inside a body that was betraying her, unable to communicate when she needed to.
After she was diagnosed with Alzheimer’s, tension permeated our close relationship. Mom struggled with shame and denial, and I had a hard time finding the patience I needed as our natural roles shifted. I was becoming the parent, and neither of us was ready for that to happen. She had always been my rock, but my rock was crumbling.
Over the years, my emotions ran the gamut. I felt cheated. While we should have been traveling and making memories together, she was slipping further into the disease. Her laughter was often replaced with tears, and piercing screams sometimes filled the air for hours. Even in the advanced stage, I’m certain she had moments of clarity and knew what was happening. It was gut wrenching to witness, so I can only imagine how it felt for her – to be trapped inside a body that was betraying her, unable to communicate when she needed to.
When she couldn’t come back to my world, I found that I could go to hers.
Time marched on, and each day was unique and unpredictable. I can’t pinpoint the exact moment that it happened, but it was like an epiphany when I truly accepted this new life. It had taken years. With that acceptance came a sense of relief and gratitude. Mom was changing every day, but she was still the woman who had been by my side for more than four decades. Her essence, the core of her being, was very much present.
When she couldn’t come back to my world, I found that I could go to hers. It was in that place we connected and shared remarkably beautiful moments of joy. Sometimes, it was just holding hands and watching the birds and squirrels hop around in the grass. Or watching her absolute delight at the sight of a hot fudge sundae or a visiting baby. We would look at photographs and I’d listen as she laughed, pointing at the images and jabbering away unintelligibly. Perhaps I couldn’t understand the words, but I could certainly grasp the emotion behind them.
Her smile, the rare “I love you,” or a glimpse of a familiar facial expression or gesture that was so unmistakably MOM brought a profound sense of gratitude. In an odd way, Alzheimer’s made our bond even stronger than it had been before. It allowed us to connect on a deeper, visceral level, and for that I will be forever grateful.
Ann is the founder and curator of the award winning blog, The Long and Winding Road: An Alzheimer’s Journey and Beyond and has been published in Chicken Soup for the Soul: Living With Alzheimer’s and Other Dementias and Seasons of Caring: Meditations for Alzheimer’s & Dementia Caregivers.
She is a co-moderator of the UsAgainstAlzheimer’s Facebook Support Group, and recently founded Marilyn’s Legacy: A World Without Alzheimer’s, a non-profit that will support low-to-no overhead organizations committed to ending Alzheimer’s disease. You can connect with Ann on Facebook and Twitter.
Thank you for this beautiful piece, Ann. I got to know you during those hard days of adjusting and suffering with your mom. You struggled and you stayed. You’ve done so much to help others with dementia since. My mother and I had powerful moments of soul contact and dream-like conversations expressing deep love during her many years of Alzheimer’s. Yes, chocolate ice cream always brought a smile.
That was a beautiful and very special story. Thank you for sharing it.
Thank you for sharing this touching story of acceptance, Ann.
I am comforted by descriptions like yours, Ann. . All of us, standing un thé light, see only the darkness into which those like your mother disappear. In the Upanishads, the deepest self, Atman, is described as “the you who exists in a dreamless sleep.” Should I ever find myself caring as you have for someone who has fallen into this dreamless sleep while still living, or should I find myself sinking into such a state, I hope I will sleep peacefully and that those who love me will discover that deeper level you describe, and there find peace.