For over five years now my family has been keeping a secret that isn’t a secret at all: anyone who has interacted with my parents during that time knows exactly what it is.
It’s a problem that has come to consume all of our lives. A problem that continues to grow worse. But because that problem reached a breaking point recently, it’s one we feel like we can talk about. These are the words that until now I’ve only been able to say to close family members and the closest of friends:
My father has Alzheimer’s disease.
We first started to notice it six or seven years ago. During the course of a Saturday afternoon, Dad would ask one of us a simple question, something like, “What time do the Royals play tonight?” An hour later, he would ask the same question again. We didn’t think much of it, or at least we didn’t admit it to ourselves.
As his memory got worse, my wife and I whispered about it in bed at night. My brother and I discussed it in secret asides at family get-togethers. We didn’t use the “A” word, not at first.
By the next year, there was no denying Dad’s memory was leaving him. When driving, he would forget the speed limit, and slow down to 35 miles per hour, even if he was on the interstate. If we were eating at an unfamiliar restaurant, Dad would get confused and think we were in a different city. He began “sundowning,” a nightmarish cycle where dementia sufferers experience increased confusion in the evenings, and he never wanted to leave the house after dark, or even if it was approaching nighttime.
By this point, while our immediate family was discussing the situation openly with Dad out of the room, my brave Mom slowly convinced Dad that he should see a doctor about his memory. The doctor asked him a series of simple questions: Who is the president? What year is it? What’s 16 plus 27? My Dad, a 68-year-old, college-educated accountant, couldn’t answer any of the questions.
The official Alzheimer’s diagnosis followed. Dad was placed on a medication called Aricept, which was supposed to slow the symptoms. It didn’t. Dad only got worse. He often would ask the same series of questions 20 times in the span of an hour. Dad would tell a story from his childhood, and as soon as the story came to an end he would start to tell the exact same story over again.
It’s like someone hit the “reset” button on his mind every few minutes.
Imagine you wake up out of a dream you can’t remember. But you’re not in bed. You’re walking through your own living room. Your son is sitting on the couch and you say hello, as though he just arrived for a visit, but he tells you he’s been there for an hour. You ask where his wife is, and he points across the room: she’s standing right there, and she’s been there for an hour too. Confused, you close your eyes.
When you open them, you’re standing in the middle of a crowded restaurant, and you’ve never been there before. You have no idea why you’re there, and you don’t see a familiar face anywhere.
You blink again, and suddenly you’re riding in the backseat of an unfamiliar car. You can tell your family is around you, enjoying a pleasant afternoon drive, but you have no idea where the car is headed and you have no recollection of how you got in the car in the first place.
Blink. You’re in the middle of a conversation with a complete stranger. You don’t know where you are, so you ask. “You’re at the hardware store,” the stranger says, “and that’s the third time you’ve asked me that question.”
Blink. Now you’re in a vast parking lot. You seem to be leaving a store, but you don’t know what kind of store, what’s inside the bag in your hand, and of course you don’t know where you parked. You walk around the parking lot but nothing refreshes your memory. Your search becomes frantic.
It’s getting dark. You’re scared. And you are utterly alone.
This is the very real nightmare that is Alzheimer’s disease.
In the last few years, we began to discover the other symptoms of Alzheimer’s, as if complete short-term memory loss wasn’t enough. Alzheimer’s disease also has a way of enhancing a person’s worst characteristics while destroying the best. Dad became constantly irritable and angry. He hardly ever talked and never wanted to socialize, especially with people outside the immediate family. And inside Dad’s brain, he began to craft elaborate conspiracy theories. One day, he believed he was being imprisoned. The next, he thought that his house, where he had lived for the last 35 years, was a hotel in a different city, and he wanted to know why our family pictures were all over the walls.
And then came the breaking point.
Three weeks ago: Dad developed a particularly nasty conspiracy theory that he wouldn’t let go. He was as angry as I’ve ever seen him, just plain mad at my mother, my brother and I for the situation we had put him in. And Dad began to show signs of violence: he slammed doors, threw things, made threats, and shoved my brother during a confrontation.
Two weeks ago: My brother received a frantic phone call in the middle of the night from Mom; she was scared that Dad would hurt her, and she needed to be picked up. My brother called me on his way over to get her, and my wife and I drove to my brother’s house.
In the twilight hours of that night, we decided it was time to act. My brother and I drove to Dad’s house at 3 a.m. By that point he was completely calm and had forgotten about the events that had caused us to come over. We spent the night at his house. But by 7 a.m. the next morning, Dad was furious again, for no reason he could enunciate. We were worried he would hurt himself or one of us.
That day was the hardest of my life. Because of his sudden behavior change, Dad’s doctor recommended we take him to the emergency room for evaluation. Of course, he wouldn’t go willingly. We called 911 and a platoon of squad cars and an ambulance arrived. He went, unwillingly, but without incident.
About one week ago: Dad was transferred from one hospital to another, this one with a special psychiatric unit that treats elderly dementia patients. He is there now. This hospital represents a transition phase. He’ll be there another week or two. And then we will have him transferred to a nursing facility with a secure Alzheimer’s wing.
It’s the only option. We all know it. Dad can’t come back home. But that knowledge doesn’t make it any easier. At least a dozen times in the past week, I’ve had doubts about whether we’re doing the right thing. I can’t sleep at night sometimes, worried that we’ve made a terrible mistake.
But every time those doubts surface, I remember two things:
First: At 3 a.m. on Dad’s last day at home, during a lucid moment, he told my brother and I something he’s told us several times since the disease took over: “If I end up going crazy, and you decide it’s time to put me away, just promise me that you’ll do what’s best for your mother.”
Second: As Dad climbed into the ambulance and looked back at his house for perhaps the last time, he told my brother and I that he never wanted to see us again.
The former incident was my Daddy talking, telling us that everything was going to be all right.
The latter incident was the disease talking, telling us that everything we ever loved about our father was gone for good.
We’ve lost Dad, and there’s no getting him back.
We’ve lost him to a disease that takes away, among other things, his ability to remember, so it’s ironic that the best thing we have left of him is our memories.
I remember Saturday mornings with my Dad. When I was little, I always woke up first on the weekends. I would tiptoe to Mom and Dad’s bedroom and I would whisper, “Hey, Dad!” He would joyfully wake up and we would go have an adventure together.
I remember summer family road trips. While my Mom and my brother conspired or napped in the backseat, I rode up front with my Dad and served as his navigator.
I remember the books. Dad loved to read, and he taught my brother and I how to love it as well. He opened up the universe to us in the pages of the vast library in his house.
I remember Dad always left work at the office. He never seemed tired when he got home from work; Dad was overjoyed to see us and spend the evening with us, each and every night.
I remember Dad took us to countless Royals games during hot Kansas City summers, and even if he had to work the next day, he would always let us stay well after the game ended to get autographs from the players.
I remember Dad’s pride at my youthful accomplishments: a good grade, a sports trophy, graduating from high school and college. He was there every step of the way.
I remember that well after dementia had taken over, my brother and his wife had a baby. Dad hadn’t been able to remember anything for years, but the instant he heard the baby boy’s name, Bryce, it became a part of him. To this day he knows his grandson’s name.
I remember Louis Edward Kelsey not by the disease that destroyed his brain and his life, but the man he made me. I remember Louis Edward Kelsey as my Dad.
- Matt Kelsey