Shared story: The important lessons I put into practice too slowly

Today’s shared story is written by Buddy Harris,
a retired minister who lives now in a cabin
on the Chattahoochee River, in Salem Alabama.

My wife, Tonya, died from early-onset dementia at 65 years of age. Her dementia was my third personal encounter with this terrible disease. Her mother had vascular dementia, and her dad suffered with Alzheimer’s. They taught me the necessity of entering their world. It was shrinking and not always anchored in reality or real time. Unfortunately, at first I forgot that lesson when my wife was first diagnosed.

Tonya and Buddy, June 2009.

Both of my in-laws died years after they moved into our home. I had the sweetest mother-in-law in the world, and my father-in-law was more of a father figure to me than my father, who died when I was 12. Tonya was the decision maker for their care. Thankfully, we had help from the Veteran’s Administration. My role was small compared to Tonya’s.

My mother-in-law died on my birthday in October of 2013. The date is important!  Two months later Tonya made a New Year’s resolution. She was giving up Diet Coke!  She believed from her internet research that she had brain fog caused by aspartame. I saw no evidence that my wife’s memory was impaired in 2013 or 2014. I don’t think I had ever heard the term brain fog before. The timing of her brain fog overlapped with her care for her mother.

Denial and then acceptance

I feel guilty for not being perceptive enough to recognize that dementia was raising its ugly head a third time. She was only 56! Dementia was for old people! There were some beginning signs of memory loss early in 2015, but not enough to know what was coming.

Big smiles, May 2020

After visiting with both of our children in May and June of 2015 in different states, the proverbial light bulb came on in my head. My kids said the same thing. “Dad, Mom keeps asking me the same question over and over.”  Next came six months of denial before Tonya conceded that something was wrong and saw a doctor. After some testing, a neuropsychologist suggested it might be adult attention deficit disorder. Tonya tried two different drugs without any improvement.

Our family doctor (whom we love dearly) diagnosed her with MCI, mild cognitive impairment, several months into 2016. After more testing in August of 2017, Tonya’s diagnosis was changed to dementia. When we got home from the doctors’ office that day we sat on the couch, held hands, and cried.

Entering her world

 A few months later I was on a ladder and I asked Tonya to hand me the hammer. It was on the table. She looked puzzled. I said it had a yellow handle; she handed me the blue pry bar.

The next day we drove by a pasture and she said, “Look at those dogs.”  Then she said, “No, those are not dogs.”

I asked her, “What are they?”  

“I can’t think of it right now,” she said. There were cows in the pasture. As you can imagine, it was a shocking two days for me. I knew these days were coming, but they arrived surprisingly soon!

I learned from Pop and Momma Mae’s dementia that you must enter the world of the dementia patient. There is no reason to argue or try to correct them. Just jump into their world and play along.

Just jump into their world and play along.

Even with my experience with dementia care, it took me too long to recognize Tonya’s world. Tonya would ask repeatedly while we were in the car, “Did you see that speed limit sign? Did you see all those cars coming? Did you see all the trash on the road?” I could not tell you how many times I answered those questions while I was in my world! I thought I was getting a bad driving review. Then it finally hit me! Those questions are her world! I finally recognized her world!  

She saw a speed limit sign and asked if I saw it. She didn’t know a hammer from a pry bar, but she knew a speed limit sign. She saw cars approaching and the trash on the roadside and she had something to say. I entered her world and started fibbing.

The right answers, the better questions

My daughter gave me the term therapeutic fibbing. I started saying, “No, what did that speed limit sign say?”  She would tell me 45. I was practicing therapeutic fibbing. I would now respond, “No, how many cars were there?” I quit answering, “Yes, I saw the sign.” I entered her world and said, “No what did it say?”

My kids later learned about sense questions. Ask the dementia sufferer questions they can answer with their senses. Do you feel that breeze? Can you hear that train whistle? Do you see that yellow flower? Can you smell the coffee? I wish I had learned that much earlier! Tonya had no memories. Dementia gobbles up short-term memory, but it devoured her long-term memory, too.

According to John 1, Jesus is God and entered our world in a human body. Jesus took on flesh to pay for our sins on the cross. My advice for those with loved ones suffering from dementia: Enter their world—today! Enter their world like Jesus entered ours! I wish I would have been smarter and entered her world sooner! 

 Buddy was in full-time ministry for 42 years and retired to take of Tonya December 26, 2021, until she “moved to Heaven” January 3, 2023.