"For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord."

Romans 8:38-39

Watching my mom’s decline due to dementia is often heartwrenching beyond belief. Each day brings new challenges and painful reminders of how quickly this disease can rob someone of their memories, their independence, and their very essence.

When I see her, I’m often overwhelmed by the cruelty of this disease. I miss terribly the vibrant, intelligent woman I’ve always known. She has been replaced by a shell. Her once bright light has been dulled by pain, sadness, and confusion.

When Mom was first diagnosed, our family began emotionally preparing ourselves for the painful day when she would no longer recognize us. We expected a future where Mom would live in an alternate reality. We thought she would forget us but assumed she would remain happy in her world. After all, the movies tend to show people regressing to an almost childlike existence.

No one prepared us for the path her illness would take. We didn’t expect her to lose mobility and be confined to a wheelchair. We were unaware she would experience days filled with incredible anxiety, followed by days of unimaginable depression. We didn’t expect her to fluctuate between catatonic, manic, and enraged - sometimes all on the same day.

When Mom was first diagnosed, her illness was difficult to detect! Looking back, the signs were there, but we didn’t see them then. Mom had never been the best housekeeper, so the gradual decline in her ability to maintain her home went largely unnoticed. The endless piles of papers, empty containers, and bags full of new purchases - socks, lotions, toiletries - were seen as Mom being Mom.

Looking back at when she was staying with me, I can’t help but feel deep guilt at my lack of patience during those challenging times. Caring for a loved one with complex needs is no easy feat, and I often fell short in my understanding and empathy.

Mom’s angry outbursts, unexpected rages, and what I mistakenly perceived as willful narcissistic tendencies - made living with her complex and eventually nearly impossible. It was a constant battle, both physically and emotionally, and I was ill-prepared for the realities of the disease and ill-informed about the symptoms and forms of decline.

We expected memory loss, but not the paranoia or that she would lose the ability to walk overnight. Her brain having lost the ability to communicate effectively with her body.

Mom has always been slow to eat her food, but she struggled to form words and began choking on her food almost overnight. Without warning, she shrunk into herself, trapped in a body that refused to follow her commands. Suddenly, her worst nightmare came to fruition.

I recall the many times she expressed her unwillingness to live trapped inside her body, and it feels especially cruel that the disease has attacked her in this way. Often, I wish she would forget rather than live in a state of fear, unable to make her body do as she wants.

There are days when I catch a glimpse of the old twinkle of mischief in her eyes, and she cracks a momentary smile. Small moments of feistiness and defiance, followed by a joke. On days like those, when I tell her I love her, she gathers her strength and says, “I love me too.” Those are good days.

When I saw her recently, she was having a particularly tough day; she was withdrawn and silent, lost in her thoughts. I wanted to provide comfort, so I asked her if she wanted me to wheel her around. She silently nodded. Round and round, we went up and down the corridors.

As we approached the common room, I heard the soothing sounds of a piano being played. My mom has always loved the piano, so I found a chair and stopped. “Do you want to hear some music, mommy?” I asked and quietly sat beside her. Together, we listened to the beautiful melody.

When the song ended, she looked up at me, tears brimming in her eyes, and uttered the words that broke my heart: “Monika...where have you been all these years? Are you taking me home?”

The raw emotion in her voice and the longing for a sense of belonging were all too much. At that moment, I wished I could whisk her away and make her feel safe again. Silently prayed for God’s mercy and gently replied. “I’m here, Mom. I would never go away and leave you for years!”

Almost imperceptibly, she nodded, so I stood and slowly wheeled her away from the common room. Another song was too much to take.