Many of us get dementia and Alzheimer’s disease mixed up, using the words interchangeably when one is a broad condition and the other is a specific disease that slowly steals memory, identity, and eventually pieces of the people we love.
My dad started showing signs when he was 87 years old, recalling the past and telling stories about the young man he was. I wish I had recorded them. He made his transition to the realm of ancestry in 2016. My sisters witnessed it firsthand. I didn’t have the tools or understanding about the disease and, from a distance, could not understand the challenges my youngest sister faced while living with him before we made the decision that he needed to be placed in a memory care facility.
Watching someone you love deteriorate on a daily basis, listening to memories that you were not a part of, hearing stories of their teenage years in great detail but not remembering what they just ate for lunch, it’s hard.
The first time we knew something was wrong, my dad, who was never on any medication, was found hiding in the bushes in front of his house and refused to come out. Something unseen from his past was there and he was afraid of it.
I remember one of the visits to the memory care wing of the nursing home. As we were walking around with him, he was telling us how he was the supervisor there and how all the people listened to him because he was the boss. Five minutes later he was asking me when I was going to get him out of there so he could go home and tend to his grass. Nothing gave him more joy than cutting grass on his riding mower.
My dad and I would go to a few elderly church members’ houses on Saturday mornings when I was a kid to cut grass. Still one of my favorite memories of time spent with him, even though it was work. Early mornings, fresh-cut grass, listening to him talk while I learned what it meant to simply spend time with your father. Alzheimer’s may have stolen parts of his memory, but it couldn’t take mine. I just hope one day the disease doesn’t rob me of those memories too.
In October of 2024 my mother-in-law moved in with us. In August of that year she drove her car through a restaurant window in Arkansas, her first accident and only traffic citation she ever got.
A few months before, we had noticed she was repeating herself over the phone. My wife decided to go down and check on her and only then did she find out that her mother had totaled her car. She never mentioned it on the phone.
We knew then she could no longer live alone, and my wife promised her she would never put her in a home, so us empty nesters now had a new housemate.
Otherwise healthy, my mother-in-law’s progression of Alzheimer’s is getting worse. I am witnessing the deterioration firsthand unlike my father’s condition, even though I was going to North Carolina one or two times a month for short visits until he was hospitalized for a fall shortly after his 90th birthday. Then I was there for weeks at a time.
My mother-in-law talks about the time she broke her right arm in a car crash on an icy winter night in Wisconsin after leaving the dance hall. The car slid off the road into a ditch. She was the only one hurt, then she shows the scar.
She talks about milking cows before school and how a farmer near the school would go early each morning to start the fire in the wood stove to warm up the single-room schoolhouse.
She recalls fondly how she got her first real job at Allen Bradley after moving to Milwaukee to help her older sister with her newborn. She walked into the interview and told the hiring manager she didn’t graduate from high school and the guy said he’d rather have someone like her instead of these kids that think they know everything because they graduated.
I’m not a doctor or an expert on Alzheimer’s but over time you start to recognize the signs and patterns. We often misidentify Alzheimer’s as dementia. I, like most people, didn’t even know there was a difference and thought they were interchangeable or that dementia simply progresses into Alzheimer’s.
Yesterday, as I watched the news reels on the current occupant of the White House surrounded by children while signing a proclamation to revive the Presidential Physical Fitness Award, my certificate from 5th grade is somewhere in the archives.
He started by asking the kids, “Barack Hussein Obama. Have you heard of him?” in the same tone you would say a cuss word.
“We had the Obama administration, which phased out this wonderful tradition of physical fitness. Thank you, Barack, very much, great job.”
Then he went into familiar territory, things we have heard repeated so often that they almost play on a loop now: a transgender woman who broke a record in powerlifting, how the 2020 election was rigged, getting the Nobel Prize, the fake news, etc.
People call this unhinged and insane. As of today, I don’t.
I’ve witnessed what this looks like firsthand. I see it every day, the forgetting what was said five minutes ago, random wandering, talking about curtains in the middle of a conversation, proclamations about the great things he’s accomplished that nobody else has ever done.
The Sundown syndrome may be the most telling indication, late at night when confusion, anxiety, agitation, fear, or restlessness become noticeably worse. Late-night tweets and posts in rapid succession. Suspicious. Angry. Anxious. Paranoid.
Look up why this happens and tell me it doesn’t seem to fit.
If Alzheimer’s causes people to retreat into the strongest and most repeated parts of their memory, I sometimes wonder what happens to a person whose inner world was built around grievance, racism, fear, humiliation, and anger. What loops in the mind when compassion was never practiced as deeply as resentment? Both my dad and mother-in-law grew up in a different era, but neither carried a need for retribution. Even in decline, their memories returned to work, family, dances, stories, survival, and ordinary life.
My dad beat up his roommate the first night in the nursing home because there was a strange white man in his house. He had a private room after that.
Allegedly, Ronald Reagan’s Alzheimer’s started while he was still in office, but there was no way the public could know about it. The country would have gone into panic.
If you ask my mother-in-law if she is hungry, she will often tell you, “Yeah, I could eat something,” even if she just finished eating ten minutes ago.
Finally, you don’t give the Montreal Cognitive Assessment repeatedly if you are not concerned that the decline is rapid.
And once you’ve lived with Alzheimer’s up close, once you’ve watched memory unravel in real time, some things stop looking political and start looking painfully familiar.