Memories that Linger: One Daughter's Experience in Losing Her Mother to Alzheimer's
As I look back over the past year, I realize that I have been struggling with the idea of grieving for my mother. Initially, I refused to allow myself to feel the sadness, but now, after more than a year since her passing, I have started to permit myself to indulge in fleeting moments of grief.
I have found myself caught between celebrating my mother's life and being consumed by the sorrow of losing her. At times, I have tried to suppress my feelings of longing and sadness as they can be overwhelming. The reality of never seeing her again is a helpless feeling that I find daunting. I am intimidated by the thought of becoming stuck in a state of sorrow and so I avoid it as much as I can.
I thought long and hard and the only approach I could take was to do what my mother would tell me to do if she were here, of course she would always tell me to follow my heart, to say what’s in my heart, to just be myself, so that’s what I’m going to do now.
Looking back at my mother, I realize that despite her petite frame of 5’4” and 110 pounds, she was a strong woman in many ways. Her vibrant personality, with a funny and flamboyant demeanor, both of which showcased her fiercely Leo and strong fiery Irish heritage, both of which she was proud of. Her light blue eyes with white sparkles in the middle and her mesmerizing smile could light up any room. She loved to dance, enjoyed music, and cherished being outdoors in the sunshine gardening or at the beach. As a teenager, I often saw her as vulnerable, weak, naive, and at times even daft. I now understand that my projection of these attributes onto her were mostly due to my childhood anger towards her for continuing to love my father after their divorce. I held her responsible for being too weak to have let him devastate her emotionally. In retrospect, I realize that she was none of those things. She was intelligent, and I never gave her enough credit for it until after she’d passed away. It was only after reading her eloquently written journal that I realized the depth of her intellect and her profound understanding of her love for God. I do feel a residual guilt for undermining her for so many years.
My mother, Nancy Kelley, had a unique ability to find beauty in the tiniest of things. She imparted this gift to me, and it became our shared treasure. We would cherish those fleeting moments that often go unnoticed, like basking in the shade and suddenly being struck by a beam of sunlight that perfectly pierces through the trees, casting a warm and radiant glow on everything around us. It wasn't just a physical sensation, but a feeling that permeated our souls. My mother's legacy lives on, and I will forever be grateful for the moments of beauty she helped me discover.
There's something special about those moments that only two people can understand and cherish together in silence. The sight of a butterfly gliding by, displaying its vibrant colors and intricate design, is truly a thing of beauty. It moves so gracefully that it seems to be in slow motion, giving us a chance to fully appreciate its magnificence before it flutters away. In those moments, I used to tell my mother how fleeting a butterfly's life is, how they spend so much time preparing for just one day. It always saddened me, but my mother had a way of finding the silver lining in everything, even in the butterfly's brief existence. Her positivity always brought me comfort, and we would continue with our day. Now, as I reflect on those memories, I miss those mornings and afternoons spent with my mother, talking, laughing, and sharing stories in the warm sunshine. We discussed everything from philosophical ideals to harsh realities, and her undying positivity always eased my worries.
During my teenage years, I was so focused on appearing to be the cooI, sought after “It-Girl” that my mother's friendly and outgoing nature made me cringe with embarrassment. I recall bringing her to one of the first gatherings amongst my similarly angsty peers, dreading the possibility of her humiliating me. To my surprise, everyone adored her, asking why they hadn't met her before and praising her. I played it cool, but secretly, I felt overshadowed by her charisma and was impressed at how easy it was for her to have everyone hanging on her every word, while I was nearly always making some sort of an effort. Looking back, I should have been grateful that she didn't humiliate me as I’d expected, but at the time, I felt a twinge of bitterness. Despite my aloof exterior, I was secretly impressed by her social skills. It took me a decade to admit this to her.
As I reflect on my mother's remarkable ability to connect with people, I realize it was her innate talent to always see the best in others that drew them to her so easily. She had a unique gift of perceiving the goodness in nearly everyone, and if you couldn't see it yourself, she would subtly and naturally guide you towards that realization. It's no surprise that anyone who spent time with her walked away feeling more loved, appreciated, and at peace.
My mother had a deep and pure love for her children and family, but most of all, she never stopped loving my father. Their love story began in the seventies when they were teenagers, with my mother's flower-child style, long silky blonde hair which grazed her lower back complimenting my father's slightly shaggy styled hair, both donning bell bottoms as they sought out new experiences together.
Despite my grandmother's disapproval and a wedding having already been in the works, they decided at the last minute to elope, clad in denim jeans, with vows being read by a friend of my fathers who happened to be ordained. My mother always recounted this story with such a sense of romantic reverie that was palpable, and now as I reflect on it, I can see the beauty in their love for each other, needing nothing more than the other’s love. Through the next five decades, whether together or apart, my mother continued to love my father unconditionally, without wavering once. Even in the worst of throes of Alzheimer's her love for him remained , as even in her last days, despite her fading lucidity, she would manage to utter a proclamation of her love for him.
It happened so fast, her decline. I can't say for sure if it was better that way or not. In April of 2021, our family decided it was time for her to move into an assisted living facility. I don't know if it was my intuition or my need for control, but I lost it emotionally. I was belligerent and shockingly nasty to my family, vehemently expressing how I felt about the matter. Deep down, I knew that her transition from her home to an assisted living facility would lead to her passing away in a relatively short time, and stated this notion without thinking to my brother, although I didn’t want that to be the truth, somehow I intuitively knew that it would be.
She was still clear-minded that April, and I remember her being scared and not wanting to leave her home. I will never forget the two of us sitting at the end of my aunt’s driveway, with my arm thrown over her shoulder. It was perhaps our very last intelligible conversation as I tried to reassure her and promised to look into every other option, and she seemed relieved. However, fate had other plans, and a freak accident caused her Alzheimer's to progress even more rapidly than we could have ever anticipated. I think of that moment often, and it haunts me to this day, feeling as if she’d trusted me to resolve the matter and that I had made her a false promise.
In April, my mother had been walking, talking, and full of energy, though forgetful at times. Despite that, her spirits were high. One day, she was taken to the hospital and put in a chemical restraint. The heavy dose of drugs was meant to restrain her both physically and mentally. She was not on any medication prior to this, aside from occasional blood pressure pills. Unfortunately, the cocktail of strong medications had a severe impact on her health, and she was never the same again. The changes were rapid, and within a few months, she became bedridden, weak, and often incoherent. Her beautiful blue eyes, which had always captivated us,began to lose their sparkle and often you’d find her staring off into the distance with a vacant look. Alzheimer's had begun to take hold of her, and it seemed to be sucking the life out of her. She was only with us a little over six months longer, until November 18 of that year. Now, when I think back on those moments, I can't help but feel a sense of loss and anger at how quickly things changed.
As I reflect on the situation, I find solace in the fact that it wasn't cancer or any other terminal illness causing her physical pain. However, it's heart-wrenching to witness the gradual erosion of one's mind, memory, and soul. The feeling of helplessness and desperation is overwhelming, as we hope that our loved one is still there somewhere, waiting to resurface. We cling onto the hope that the good days will become the new normal, and that progress will triumph over regression. But deep down, we know that denial is the only way to cope with the slow exit of the person we once adored, as they slip away from their physical body. This poignant experience is both frustrating and desperate, leaving a lasting impact on all those involved.
On the day before my mother passed away, I was at work, ninety miles away from her bedside. The previous few months had been a tumultuous roller coaster ride, with the constant fear of the inevitable moment. It was then that I received a call from her nurse, Megan, who urged me to connect via FaceTime as she stated that it was, indeed, time to “say goodbye”. That surreal thought still lingers in my mind- the time to say goodbye. Goodbye is quite an understatement for such a thing. How does one even begin to say goodbye to a parent, who has always been an integral part of their existence, and who brought them into this world? How do you say goodbye to that person? Especially, caught off guard, attempting to decide upon the “right” words in a matter of moments… what are the appropriate words in this moment?
My head was spinning as I struggled to find the "right" words that would befit the occasion. What words could ever be appropriate for such a profound, heart-wrenching moment?
I logged into Facetime, trying my best not to panic. In the back of my mind even then, I remember that I quietly tried to soothe myself with the denial that perhaps this was just another false alarm and we would have more time, more time of what? I don't know, but I’m not sure one is ever ready for these things.
As soon as my eyes met hers, I knew that something had changed. Her once lively face was now pale and lifeless, her gaze lost in the distance. A sense of finality washed over me, and my gut dropped with the realization that it was indeed, time to say goodbye. The surge of emotions that followed left me reeling - shock, anger, and profound sorrow mingled with desperation and denial. I was utterly paralyzed, unsure of what to do or say. In moments like these, words are woefully inadequate, especially when the person you're talking to can't respond. Reflecting on that moment now, it still feels raw and powerful - a testament to the depth of my feelings and the intensity of that farewell.
As my mind struggled to process logic, all I could focus on was bringing her solace. Without thinking, I turned to the one thing that I had always done to make her happy - my first memory of such is one that has been with me ever since I can remember. I can still recall vividly, at four years old, performing a song and dance routine on stage to Manfred Mann's "Do Wah Diddy Diddy". With my eyes closed, I can still envision my mother sitting in the front row now, I can see her big, pearly white smile radiating pride.
In that moment as a young girl, I knew that my performance had brought her immense joy, which in turn filled my small heart with happiness. Thus, throughout our lives, when turmoil or sorrow was present, I would resort to my old trick, enlisting my blonde-haired baby brother, Ryan Thomas, in tow. I would meticulously select the perfect song, teach Ryan the choreography, and ensure we had at least three dress rehearsals prior.
Another memorable “performance” of ours that I hold dear to my heart is when Ryan and I put on a performance for my mother after months of being apart. As a young child, I somehow understood the guilt she might have felt as a mother for leaving us for so long. I wanted to assure her that life goes on, and what better way to do that than with the upbeat Beatles' track "Ob-La-Di, Ob-La-Da." (literal meaning is ‘life goes on’) Ryan and I rehearsed and then eagerly awaited her arrival. As soon as she walked through the door, we burst into song and dance, surprising her with our heartfelt performance,as we stood on tabletops in my father's living room.
I’m pretty certain that she teared up a bit. At least I hope she did.
It wasn't until months after her passing that I realized the significance of these memories and how performing was perhaps the only consistent theme throughout our time together.
The moment that marked the end of our time together was undoubtedly a somber one, to say the least. Despite my breaking heart, the song choice in that moment came to me straight away as there had only been one song that held so much meaning to my mother throughout the years, it was the melody that my father had once dedicated to her during their youthful days of love, and it had always brought her to tears of joy.
As I took several deep breaths in an attempt to gain my composure, I began singing "Your Song" by Elton John. While my voice initially faltered, I did my best to soldier on, determined to comfort her with the song she’d always loved, the song that never failed to put her into a wonderful mood.
As I sang the words, I couldn't help but shed tears of sadness, yet I sang through them smiling, emphasizing the lyrics I knew resonated with her most. Even through the phone screen barrier of Facetime, there was a moment where the two of us once again connected and the love between us, mother and daughter was palpable. It was both bittersweet and beautiful.
In that moment, I glimpsed a spark of recognition in my mother’s eyes which had been absent for weeks. Though it was difficult, and although tears continued to fall freely down my cheeks while I sang the song, I made them appear to be happy tears, forcing myself to smile through my sorrow and my hatred at this moment of saying goodbye to her, I did my best to show her that I was smiling. For one last moment, I swear that I saw my mother smiling back at me too.
-Christy Chilton
June 3, 2023