“Do you know who I am?” I asked mom. She scanned my face, lowered her eyes, shrugged her shoulders, and nodded in the negative.
I offered a clue: “I’m your daughter. And you named me after your sister.”
“You’re Elaine,” she said. “My sister was such a good person.”
I hate dementia and what it has done to my mom. For 11 years this brutal brain disease, that afflicts more than 10 million people each year, has systematically destroyed my mom’s memory. The first signs began around the time she celebrated her 70th birthday. She knew something was wrong and would often say, “My brain just doesn’t work anymore.” And now at 81, this once brilliant woman doesn’t remember who I am, only that I am familiar.
Pieces of her long-term memory are still firing, but her regression is hastening, especially since her husband, my dad, passed away six months ago. Memories of her parents, her childhood home, and her older sister by two years, who passed when mom was 10, seemingly have become her distorted reality. She doesn’t remember her two younger brothers, both of whom are still alive.
When dad passed in April 2021, my younger brother moved mom into his home to care for her. Mom begs to go home, but the house she shared with my dad isn’t “home.” In mom’s mind, home is her childhood dwelling, now occupied by strangers. And no matter how many times you explain when she questions why she’s living in a place she doesn’t recognize, even though she’s been there hundreds of times before, the answers just don’t stick. And so, she’s tortured repeatedly by answers that make no sense and bring no satisfaction to her.
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 the debilitating and progressive disease.
Families do their best to keep mom or dad at home, but as the disease marches on, keeping the demented patient safe while also providing 24-hour care becomes an issue that often forces loved ones to consider in-care facilities. That’s where we are now with mom. It’s not an easy decision to make. No one wants to feel they’re abandoning their parents into the care of strangers. But it is an inevitability, especially when caregiving becomes too difficult for the untrained loved one.
As much as we long to keep her close at hand, we realize keeping her safe and healthy is becoming increasingly more difficult. Frequent urinary tract infections only exacerbate the dementia symptoms, which worsen as nighttime approaches. Often, dementia patients become confused near the end of the day and into the evening, marked by adverse behavior such as anxiety, aggression and wandering. Medical experts call it sundowning. As the disease progresses, sundowning becomes more profound and creates an unsafe situation for the demented as they tend to wander away from the house.
It occurred to me during a recent visit with mom that our roles have reversed. My brother, my sister-in-law, and I have each become the caregiver, the cook, the comforter and the encourager. Mom bore five children; the youngest died in infancy and the oldest lost his life just four years ago after an Afib-induced stroke. She nurtured, guided and loved us unconditionally. She was driven by love for family, an unmatched work ethic, and a strong faith in God. She had died to self long before her babies were out of diapers. Mom lived her life in sacrificial mode, where others’ needs were more important than her own.
And now, this once independent woman who did and did for others, is dependent on others to keep her well, safe, 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.
Not once did she call my name
One night while lying beside her in bed, I could hear her whispering, but couldn’t discern the words. She seemed troubled. I asked her what was wrong.
“I’m dying,” she says quietly.
“No mom, you’re OK,” I reassure her tenderly.
“I just don’t know what I’m supposed to be doing,” she responds.
I rub her back, her arm and her head and say: “Mom, 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 mom. Everything is not OK.
The next morning, I slipped out of the bed I shared with mom for a week to make the eight-hour drive back home. I prayed over her – as always begging for a miracle – and softly touched the top of her head before sneaking out of the room.
She won’t remember when she wakes that I was ever there. The frequent short visits are now more for me than they are for her.
On the long drive back, I replayed our time together. I made her meals; dispensed her meds; cleaned up the bathroom accidents; washed her face and her clothes; watched movies with her; and tucked her into bed day after day. She mostly slept the days away, something people with dementia do because wakefulness only adds to their frustration as their brains constantly try to figure out what’s happening around them. For them, it’s a little less torturous to simply sleep than to be awake and confused, bewildered and afraid.
For a week, I played the role of mom; and she the child. Though sadly, she didn’t know who I was, only that I was familiar. In looking back over the course of the week, I realized not once did she call my name.
It’s likely she never will again.