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The Long Goodbye

By Lainey Veltri

As I drive to the Memory Care Unit where Mom now resides, I pray to the Creator to put my name on her lips.

“God, if she would just say my name, it would be the best gift ever,” I pray. “If she says my name, I will know you heard my prayer.”

More than 450 miles separate Mom and me, but occasional road trips lead me to spend time with her in my small hometown. Nowadays, the visits are more for me as I cling to what’s left of my mother who’s lost the perception of time and place. Even worse than the miles between us is the chasm of dementia that’s robbed her of her memories, including the memory of me, her only daughter.

Mom knows I’m familiar, but being her daughter no longer holds meaning for her. She doesn’t remember that she had five children, one of whom died at birth, another who died seven years ago. She doesn’t remember she was married. What she does remember is her parents, her childhood education and a deceased sister whose namesake I inherited.

Dementia began pilfering Mom’s brain about 15 years ago. She was 70 when the first signs of the degenerative brain disease emerged.

“My brain just doesn’t work anymore,” she’d say when she couldn’t recall a detail or a word.

This brutal brain disease for which there is no cure afflicts more than 10 million people each year. More severe forms like Lewy Body Dementia have been diagnosed in famous people like Bruce Willis and Robin Williams, raising awareness about how swiftly this disease can sweep through the brain until life is no longer sustainable. For Mom, it’s been an insidious slow fade. I’ve been losing her every day for the past 14 years.

She said my name

I make my way to the dining area of the Memory Care Unit to find Mom eating lunch. She’s not sure how to use the utensils and tries to scoop soup with a fork. I guide her to the spoon.

“Hi mommy, do you know who I am?” I ask cheerfully. She shrugs. “Should I know you?”

“I’m your daughter,” I say. “You named me after your sister.”

“You’re Elaine,” she says. “Yes, mommy, I’m Elaine!” I exclaim.

She remembered my name. Even though she may not make the connection that I'm her daughter, this day I decided I’d be her sister. And I thank God for the answered prayer.

Dementia and hard decisions

Mom is among the more than 50 million people—mostly women—around the world suffering with dementia. In America alone, more than 6 million people are living with this debilitating disease.

Families do their best to keep the afflicted parent at home, but as the disease worsens, providing 24-hour care in a safe environment becomes a challenge that often forces loved ones to consider in-care facilities. That’s the path my siblings and I had to choose when Mom began wandering outside the home, leaving the stove on and becoming combative. She was no longer safe even whilst living at home with her children.

As much as we wanted to keep her close at hand, we realized her safety and health required more than we could provide.

Role reversal

It dawned on me how our roles had reversed. My brother, my sister-in-law and I had each become the caregiver, the cook, the comforter and the encourager. Mom was once the nurturer who guided and loved us unconditionally. She was driven by love for family, an unmatched work ethic and a strong faith in God.

She died to “self” long before her babies were out of diapers. She lived her life in sacrificial mode, where others’ needs were more important than her own. And now, this once independent woman with a servant’s heart is dependent on others to keep her safe, well and sheltered.

Moments of clarity have become few and far between. The light in her eyes is fading. Her once cheerful and pleasant personality is imprisoned in the far recesses of her diseased brain. And in those sparse moments of abbreviated awareness, she knows there’s no coming back from the slow fade. It pains her, albeit briefly, and those who love her, albeit much deeper and longer lasting. We are losing her slowly, methodically and painfully. And yet we are grateful for those times when she breaks through and gifts us with glimpses of her love and light.

Sweet and bittersweet moments

One evening, while lying beside her in bed, I hear Mom whispering, but I’m unable to decipher the words. She seemed troubled, so I asked what was wrong.

“I’m dying,” she says quietly.

“No, Mom, you’re OK,” I reassured her tenderly.

“I just don’t know what I’m supposed to be doing,” she says.

I rub her back and say, “Mommy, you don’t have to do anything right now but just try to relax. Everything is going to be OK. You’re OK.”

A tear slides down my cheek, knowing I just had to lie to my mother. Everything is not OK. We are losing her, and she is losing herself.

During our last evening together before making the seven-and-a-half-hour trip back to my South Carolina home, I crawl into Mom’s bed at the Memory Care Unit. I sing to her a song she often sang to me when I was a child curled up on her lap in the rocker, the smell of coffee and sweet cream on her breath:

“You are my sunshine, my only sunshine,” I sing softly. “You make me happy when skies are gray.”

Suddenly, Mom begins singing along with me. Her eyes are closed. Her voice is soft yet missing not a word. I smile as a tear slides down my cheek. And I thank God for this moment Mom won’t remember but that I’ll cherish forever. Hopefully, I won’t ever forget.

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