Finding Light in the Darkness of Alzheimer’s
In 2010, at the age of 78, my mother, Ann Graves, realized she was experiencing short-term memory loss. After extensive testing, she was diagnosed with mild/moderate Alzheimer’s disease – the dreaded A word. Overnight, Alzheimer’s became part of our family’s vocabulary.
Today, more than 6 million Americans are living with this debilitating disease of the brain, with more than 11 million Americans providing unpaid care for a loved one living with Alzheimer’s or other dementias, according to ALZ.org.
Mom began the medications available hoping to stabilize the progression of dementia. The following two years she continued to live alone, with a thoughtful neighbor next door checking on her frequently and my weekly visits. Her life was full as she enjoyed mall walking, lunches with her siblings, church attendance and her weekly hair appointment. In September 2012, the anesthesia during eye surgery dramatically progressed Mom’s dementia. With her vision loss and increased cognitive impairment, she could no longer drive or live alone.
As Mom’s primary caregiver, I gathered information from “The 36-Hour Day” book by Peter V. Rabins and Nancy L. Mace, and the Alzheimer’s Association website, on how to best help her. In spite of praying for the best and preparing for the worst, I was still blindsided by the unexpected. One hot summer day I left Mom in the car with the engine and air conditioner running while I ran into a store just a few feet away. The errand took longer than intended and when I returned, she was gone. I frantically searched the parking lot screaming for her. She had walked to the other end of the shopping center looking for me. What had I done? What if she had fallen onto the hot pavement? What if she had been hit by a car? Overwhelmed with guilt, I hugged her and cried, asking her to forgive me. Never again would I be so careless.
The milestones one may experience with a terminal illness that afflicts the physical body are not applicable to Alzheimer’s and dementia. Mom would be engaged in natural conversation one second, and the next not know where she was or why she was there. During a neurologist appointment, I mentioned my father’s death years prior. Mom cried out, “You mean he’s gone?” It was as if she’d heard the devastating news for the first time. Caregivers are advised to go where their loved ones are because they cannot come to them.
Mom’s inability to reason or understand she could no longer live independently, forced my brother and me to move her against her will. I later learned about anosognosia, a clinical term for the condition that often affects those living with dementia, impairing their ability to understand or accept they are ill. Knowing there was a medical reason for her resistance and her unawareness of her deteriorating mind, helped me to be more compassionate rather than frustrated and angry. Mom resided for five and a half years at an exceptional assisted living facility, where she enjoyed social activities and healthy meals.
In 2018, eight years after her diagnosis, Mom began experiencing symptoms of the final stage of Alzheimer’s. Her speech became impaired, and she sometimes addressed me as if I was someone else. As I watched her decline mentally and physically, I prayed she would not lose the ability to communicate, feed herself and walk.
During her final year, a resident aid took a photograph of Mom leaning over a fellow resident, a lady wheelchair bound due to a stroke. Mom held her friend’s hand as she spoke sweetly to her and sometimes gently kissed her forehead. Somehow, she knew her friend was infirm and expressed concern for her. Before Alzheimer’s, such loving gestures were common with Mom. I treasure the photograph as a glimpse of the mother I knew and loved deeply before Alzheimer’s slowly took her away. Alzheimer’s has been termed “the long goodbye” because as it progresses slowly, much of an individual’s personality is chipped away as their cognitive skills and memory deteriorate. Their bodies decline as well, but at a much slower pace, contrary to an individual suffering from terminal cancer or congestive heart failure, where their personality remains intact.
As Mom’s dementia progressed, birthdays and holidays, once times of joyous celebration, were no longer remembered. She worked diligently every year to create wonderful Christmas traditions for our family; from a huge beautifully decorated tree with lots of presents to her special homemade cakes, our home was filled with the true spirit of Christmas. But, Alzheimer’s stole Christmas from her. Even though she didn’t remember, I continued to celebrate special days with her, knowing I would always cherish the memory.
The day before my birthday, December 2018, Mom and I returned to her facility from an appointment to find Santa and Mrs. Claus! Mom’s face lit up like a child’s, her radiant smile, a rare sight in the dark days of Alzheimer’s, and a special birthday blessing for me.
For caregivers, brief glimpses of their loved ones, before the dreaded A word attacked their brains, are glimmers of light in the darkness of the disease. Such glimpses may appear in a rare smile or laugh; or when their loved one recalls lyrics to a song from their childhood.
Just months before Mom passed away, she called out to me as I was leaving her apartment saying, “I’m so glad God gave you to me!” I turned to her, and we held each other. That brief lucid moment of my Mom’s innate personality gave me such comfort.
Mom suffered a stroke in July 2019 and was comatose for 12 days. I held her hand as she peacefully passed away, nine years after her diagnosis of Alzheimer’s. Our prayers were answered as she did not lose her ability to communicate, walk or feed herself until her last few days. Comforted by wonderful memories of a life well lived, I cherish the glimmers of light that shined through the darkest days of Alzheimer’s.
I’m so glad God gave her to me.
– Vicki Davis, an Atlanta native, frequently visited her parents’ hometown of Acworth. She moved to the area 32 years ago with her husband and sons. Family is her focus; writing is her passion.
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