The Night My Grandma Disappeared: A Kentucky Woman’s Battle with Alzheimer’s Disease

It's been nearly twenty years, but I remember that first night like it was yesterday. My mom called me and asked me to drive out to Philpot. Something was wrong with my grandmother, but neither she nor my granddad knew exactly what was going on. It was around 10:30pm when I got to their house out on on Highway 142. My grandmother was sitting in her recliner and was clutching the TV section of the Messenger-Inquirer newspaper. She had folded it so tightly that you could only see the line that showed what was going to be on NBC. She was demanding to know why Ann Komis wasn't on her television. For those of you who are unaware, Ann Komis is a legendary news anchor on WFIE, the NBC affiliate in nearby Evansville, Indiana. My grandma wanted to know why she wasn't on the news that night and why she wasn't on right then.

But here's the deal. The news was over and Saturday Night Live had started. My grandmother didn't believe that either and I couldn't convince her that the TV listings were correct. However, there we were. SNL was on at 10:30 just like it was supposed to be. We found ourselves gathered around a woman who refused to believe that a show that was on her television was actually on her television.  She was adamant, combative and, well, crazy. Catherine (that's what I called her) was taken out of her home that night by paramedics and didn't return for days and days. Though there were likely smaller warning signs before that night, the 'Ann Komis' incident was certainly the impetus that thrust her condition into overdrive. Catherine spent considerable time in the hospital, where it became clear that she was in a battle with Alzheimer's disease.

Before I go on, I need to tell you that I understand how sad and devastating this disease is. But, in full transparency, I have to be honest about how my family dealt with it. I think the experience was different for all of us. My aunt was consumed with the immediate starkness of it. I get that. It's hard to watch someone's mental faculties decline right in front of you. My mom went into full caretaker mode and helped my grandmother manage transitions from one floor of the hospital to the other. I, and you may not understand this, tried to find some humor in the tragedy.

One day, I happened to arrive at the hospital the precise moment they were walking my grandmother into the psychiatric ward. She had a negative reaction to some medication and it made her paranoid and belligerent. My mom and aunt were walking her down the hallway and my grandmother was cussing out nurses along the journey. She even loudly accused one of trying to kill her. Okay, not funny, but that's kinda funny. In fact, I remember telling my mom and aunt, "Well, it looks like I got here at just the right time."

As we were getting her settled into her new room, I saw my friend Stephanie, who was a social worker/case worker.  She asked, "Chad, what are you doing here?" I was standing behind my grandmother and just nodded her way and pointed down at her head.  My grandmother then loudly called Stephanie a "son-of-a-b*tch" and assured me I couldn't trust her. Okay, I'll concede. I can understand why people see sadness in that, but I found it rather comical to be apologizing to a friend from graduate school because my grandmother thought she was a raging S.O.B.

During her brief time in the 'ward,' my grandmother also got rather free with her discussions of sexual activity. Now, you have to understand. This is a woman who once petitioned a local television station to remove Dr. Ruth's late-night sex advice show from the airwaves. My grandmother was a notorious prude. It's quite possible she only had sex with my grandfather twice. So, to hear her speaking about sex so loudly and proudly was quite a shock. My sisters and I laughed hysterically about it. Did she really just say that? Is THIS really our grandmother?

Of course, anyone who's ever had a relative battle and suffer from Alzheimer's knows the answer to that question. The answer is "No, it wasn't her."

Eventually, Catherine returned home and my grandfather quickly learned he couldn't care for her alone. I got another call- this one in the early morning hours. Catherine had grabbed a pillow and a flashlight and left the house in the middle of the night. Russell woke up and discovered she was gone and a frantic search for her began. My grandparents had a lake on their property. The initial fear is that she was in it. Thankfully, a firefighter found her elsewhere, but only because my grandma got caught in a barbed wire fence. According to Catherine, she was going "camping." In reality, she had to go into assisted living. Not only had Alzheimer's made her forgetful, it had made her a danger to herself.

Here's what she looked like after they got her back home.

I know that photo is startling. See, the ugly truth is that it doesn't take long for those strangely comic aspects of Alzheimer's to become painfully unfunny.

When she arrived at Owensboro Place, the grandmother I knew and loved was someone vastly different. Her mind was someone else's.

Catherine and I had an incredible relationship. I loved that woman and she was my biggest champion.

And our bond was built on humor. Seriously, her nickname for me was "Horse's Ass." That's what she called me and how she introduced me- to nearly everyone we encountered.

But as Alzheimer's continued to eat away at her, "Horse's Ass" morphed into someone else entirely. Though she recognized me, I was not her grandson. I was someone else to her. I was "Henry Lenny", a man she went to high school with. Whoever he was to her, for whatever reason, she assigned him to me. That's when I knew that my grandmother was gone.

I didn't go to visit her too often in the last few months of her life. The visits from Henry Lenny were just different than the visits from me. My grandfather was there every single day though with their dog, Pepper. The daily ritual was a can of Vienna sausages and some ice cream for dessert. Yeah, I know. That's so gross. There was a little humor in that bizarre diet, but, more poetically, there was joy and love. My grandmother would always light up the moment my grandfather arrived with her lunch. Honestly, I don't think she ever forgot who he was. Russell and Pepper were the two constants her mind allowed her to keep.

The night my grandmother died, I drove out to her house on 142. Yes, I had received another phone call in the middle of the night. This time it was my mom letting me know that Catherine had died. Kevin and I drove to Philpot so I could tell my granddad. I knocked on the door and waited for him to answer it. It seemed like it took forever. He had been asleep- fast asleep- and it was obvious he wasn't quite coherent when he came to the door. He rubbed his eyes and asked, "What's going on?"

I said, "Russell, you need to get dressed. We have to go. Grandma's dead."

I will never forget it. He just said, "Okay."

He didn't cry. I don't think his heart had the strength to let him. He just walked slowly into the bathroom, methodically brushed his teeth, and finally got dressed. It took him a long time. Looking back, I think it was his way of delaying the inevitable. He knew that drive to Owensboro Place was going to be his last.  That was a long drive. It was an even longer goodbye. Those tears he didn't shed earlier came pouring out of his eyes and soul.

Alzheimer's took my grandmother. It may have robbed you of someone too. But as formidable and agonizing as the disease is for the families who experience it, its power is somewhat diminished by a sense of irony. While it attacks the minds and memories of its victims, there are truly some memories that can never be erased.

Alzheimer's tried its best to erode my grandmother, but she will forever be loved and remembered by her favorite horse's ass and her dear friend Henry Lenny.

Let's Put an End to Alzheimer's

The annual Walk to End Alzheimer's in Owensboro, Kentucky is set for Sunday, September 29th at Smothers Park in downtown Owensboro. The event opens at 1:30 pm, with a ceremony at 2:15 and the walk set to begin at 2:30. If you'd like to volunteer or participate in the walk, CLICK HERE!

Plus, if you are interested, there is an Alzheimer's Association Helpline. It's your guide to resources and support. If your family is experiencing Alzheimer's, please call 1-800-272-3900.