In whatever form it manifests itself, dementia is callous.
Whether it be the inability to find the correct words to convey what one is thinking or the inability to recognize loved ones, the ability to converse with people who aren't really there or the loss of memory, dementia takes its toll on not only the person it afflicts, but also family and friends of the person.
Perhaps the most well known of the dementia diseases is Alzheimer's disease. Celebrities such as Rita Hayworth, Ronald Reagan, Charlton Heston, Glen Campbell, Burgess Meredith, Perry Como, and Eddie Albert were among the millions who have suffered from Alzheimer's.
Although Alzheimer's disease usually is top of mind when "dementia" is mentioned, there are many other forms of dementia. For instance, an autopsy revealed that Robin Williams was in the advanced stages of Lewy body dementia at the time of his death by suicide in 2014, according to information on the Lewy Body Dementia Association website (https://www.lbda.org/blog/robin-williams-and-lewy-body-dementia-2/).
Actor Bruce Willis has been diagnosed with frontotemporal dementia, according to a family statement published on the Association for Frontotemporal Degeneration website (https://www.theaftd.org/mnlstatement23/ Feb. 16, 2023).
About seven years ago, my Mom was diagnosed with Parkinson's disease (the same disease that actor Michael J. Fox has). We had noticed that her hands shook while reading the newspaper, so much so that I could hear the pages rattling from across the room. She also was having trouble sleeping, partly because her legs shook in bed.
Mom's primary physician at the time referred her to a neurologist, who made the Parkinson's diagnosis and prescribed medication to help lessen the tremors. After the initial couple of visits, Mom had to see the neurologist every six months. While there, she had to take a scored one-page cognitive test, an eyes and limbs movement test, and a walking test.
Initially, Dad and I split doctor duty. He took Mom to appointments with her primary physician and I took Mom to her appointments with the neurologist. During the first several years, Mom's scores on the cognitive tests were fairly close.
Several years ago, however, her score took a nose dive and her neurologist prescribed medication that could slow the progression of the dementia. During that time, Mom's mobility also decreased and she was forced to use a walker, something she absolutely hated. She tried her best to not have to use the walker, moving around the house by holding on to furniture or the walls. I never knew for sure whether, because of her dementia, she didn't understand why it was safer for her to use the walker or she just didn't want to and was being stubborn. (Stubborn runs in the family and I inherited it from both sides!)
After a while, however, Mom decided to quit taking the dementia-slowing medication as it made her light-headed and dizzy. The neurologist said it was her decision, and we moved on knowing that her cognitive abilities would decline more rapidly than they had been.
She still asked me daily what day it was, though those questions rapidly increased to multiple times in the same day. Some days she had trouble remembering or understanding what I had just said to her, while other days we could chat as we had for years.
The past few years, Mom increasingly made notes about almost anything. For instance, if I had gone to pick up supper while we were watching a baseball or football game, she would make notes of who scored while I was gone so she could tell me about it when I returned. If there was something on the news that piqued her interest, she would make a note about it.
Her cognitive decline really began to take a turn for the worse while Dad was recovering from cancer surgery in the fall of 2022. My normally chatty Mom did little more than sit by Dad when I would take her to see him while he was rehabbing. At the time, I thought that, perhaps, the whole situation was too overwhelming for her.
After the ICU nurse called the night Dad died a few months later, I woke up Mom to tell her. She said "Oh my," cried for a couple of minutes, and then went back to sleep.
Shortly after Dad died, Mom developed an affection for one of our dog's stuffed toys, a stuffed baby deer. Now Jorgie's toy wasn't really a dog toy. It was made for a child, but Jorgie was my child, thus he got the baby deer. Jorgie loved that baby deer and didn't understand why his Grandma kept taking it away from him. She finally put it on the back of the couch behind her where Jorgie couldn't get to it.
Later in the year, for the first time in my life, Mom forgot my birthday. That was tough, though I knew she forgot because of the dementia. The day after my birthday, she had an inkling and asked when my birthday was.
Last fall, when I had to have Jorgie put down because of kidney disease, I came home from the vet's office with nothing but his collar and tags. Mom asked if Jorgie was staying at the vet's for a few days. I told her, while tears streamed down my face, that Jorgie was dead and wouldn't be coming back home. I sat across the room from Mom, ugly crying for what seemed an eternity while she stared blankly at me for a couple of minutes and then went back to her book.
The neurologist later told me that sometimes people with dementia lose the ability to express emotions and to empathize with others. (That also explained her reaction when I told her Dad had died.)
Shortly after Jorgie died, Mom began placing the baby deer next to her on the couch and petting it. At night, the baby dear sat on the back of the couch. Each night, as she got up to go to bed, she would pet the baby deer and tell it "goodnight."
By far, the worst moment, however, was when Mom looked me in the eye and asked, "Where's Leslie?" I knew I couldn't react the way I felt inside, so in the calmest voice I could muster I said, "Mom, I am Leslie." She cocked her head a bit and looked at me, and then she said, "well, you are," and went back to reading her book. Thank goodness that only happened once.
Fortunately for Mom and I, she never developed the ability to see and converse with people who really weren't there. That is a condition that also sometimes afflicts persons with Parkinson's and dementia.
Through it all, I tried to remember what a friend whose father had Parkinson's once told me: that instead of trying to correct Parkinson's patients for their inability to comprehend what we know to be real, it is better and less upsetting to them to just be present in their version of reality.
I think I did that. At least I tried to do so. Despite the challenges posed by the Parkinson's and dementia, I tried to make Mom's final years happy ones.
I hope she saw them that way.
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