Mom's Window

This is something that was originally post a year ago, but mom has passed since then, and some things have changed.

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In October, 2021, Alzheimer’s and Dementia began working overtime to take our mother away. Many knew and loved my mother as someone with a smile that lit up the room and an infectious laugh. Most would remember playing hide-and-seek at the big house in Fort Wayne, or playing “Red Light/Green Light” in the yard at my grandmother’s house in Augusta. They might remember her singing, laughing, playing pranks, etc., but one thing is certain, they’d remember her need to get the first and last hug, then to wave good-bye until she couldn’t see you anymore.

Mom preferred not to struggle getting us out of bed for school, so she developed a ritual that stayed with her the rest of her life. The minute she was up, she either put on her clothes for the day, or tossed on a robe, slippers, and a matching set of earrings, and hit the floor moving! She threw open our bedroom doors saying: “It’s time to get up!”, then she’d open the blinds and make for the kitchen. We knew we had better get up because the second warning wasn’t as nice and if she came back? Oh Lord!

Fortunately, it’s hard to sleep in daylight so, we were almost instantly up. Grumbling, but up. Before we were out of bed, mom had rock-n-roll going, daylight streaming from every window, and she was doing stuff. What that stuff was, I don’t know. I just remember the daylight and rock-n-roll… and mom was in the kitchen with her coffee doing stuff.

My mother loved windows and light. The more light, the better, particularly natural light. When I was little, mom and dad took me downtown at Christmas time to look in all the shop windows. Back then, snow-covered streets lined the Indiana shops with huge window fronts that they dressed elaborately for Christmas. Mom had to see all the lights and decorations. She breathed the holiday feeling through those festive shop windows. Her family never celebrated Christmas like my father’s did so the whole thing was a wonder to her, just as it was to me.

In fact, one of mom’s favorite things to do, was go “window-shopping”, which was actually the equivalent of browsing Amazon today with no intention of purchasing, we just did it in person. This consisted of physically walking the rows of downtown streets, (which was a highly sought-after area at the time) and gazing longingly at crap we couldn’t afford. She always saved the lighting store for last because they had gorgeous chandeliers hanging in displays in the windows, and she was enchanted with the way the light made the crystals sparkle. Those were long days. Sometimes the walking was murderous on my young legs, but it very often ended with coffee at one of my aunts’ houses and a little something from the candy store or the five-and-dime.

When my parents bought their first house, dad got my mom a Victorian two-story on Home Avenue in Fort Wayne, Indiana. (The green house pictured here)

A lot has changed since then but one thing remained the same, the entire house was covered in ceiling to floor windows. The house had a turret on the left side, (when you looked at it from the street), kind of like a fantasy castle tower. The entire top floor was almost all windows on the front side. Natural light spilled from every windowpane and many of the rooms were separated by French Doors to ensure that the light continued through the large space. In fact, mom filled the house up with as many chandeliers as she and my dad could afford to ensure that her house was totally bathed in opulent light.

Far greater than mom’s love of art and light, was her love for family. Having been born close to the end of the Great Depression, she’d come from an unusual family and some of the stories she told of her difficult childhood were cringe-worthy.

My mother nurtured a love of reading and communicating. We were told early-on that hate was a four-letter word and we weren’t allowed to use it or any other swear word. She routinely reminded us that someone you love and aren’t kind to today, could be dead tomorrow and you could never take anything back. Regret was a difficult burden to bear, and certainly something she didn’t want for us. You could be angry and still love someone. In fact, she expected us to tell them even when we were arguing.

Nearly manic about making sure people knew you loved them, mom (and later my stepdad), would walk you to your car and make sure you were hugged good-bye and told that they loved you, to be careful going home. They stood in the yard waving until they couldn’t see you anymore. As a young adult trying to get kids in the car and get home to cook and things like that, I found good-bye rituals unnecessary. I used to think, 'surely after all these years, mom knows that I know she loves me!'

At the end of 2020, my siblings and I went to mom’s house to help with some cleaning at my stepdad’s request. Mom’s condition had taken a turn for the worse and he had his hands so full that the house had literally gone to the dogs… and cats.

The three of us and our children spent days cleaning, ripping out carpet, making repairs, doing laundry, etc., and it was obvious that mom’s problem had spiraled out of control. By the time her mouth was ready to say something, her mind was three steps ahead of the first thought and she couldn’t make whole words and/or sentences.

For years mom struggled with hyperactivity, having a short attention span and forgetting things, but it was never out of control. When she couldn’t remember the name of a place, she would say descriptive things like: “the yellow and black store”, which we knew meant “Dollar General”, or “You know that place that has the skillets I like”, which translated to “Denny’s”. It wasn’t until after my younger sister’s passing that that things began to turn.

Mom called me from the parking lot of the mall and said:

“Don’t laugh. I know where I am, and I know where I live so I’m not crazy.”

“Ok.” I kind of giggled my response. I was at work and unsure where she was going with this.

“I turned into a neighborhood I don’t remember, and I was riding, enjoying the pretty houses, then realized that I didn’t know where I was. I had no trouble getting to the mall, but I can’t remember for the life of me how to get home.”

Not a big deal. We’ve all been tooling, thinking about a thousand things and suddenly look up, needing to get re-oriented. Mom just couldn’t get reoriented, so I stayed on the phone for turn 1 and 2, and then she remembered where she was.

I hung up, thinking that conversation odd, but everything else was “mom-normal”, so I shrugged it off. She loved getting in the car and driving. With her sense of direction, mom could navigate just about any city, sight unseen so this really should have been a red flag. I wish I’d been more concerned.

Within the year, my best friend of 12 years got sick. She went through the mental illness of her own mother, followed by her death, and was then diagnosed with Bile Duct Cancer. Visiting my mom and dad became secondary to caring for my friend and aside from taking food over when they were sick, running a few errands, or jamming guitars with dad, visiting my parents didn’t seem so important. Mom and I talked on the phone daily, so I never realized how far she had declined in a few short months. I did most of the talking and mom's conversations were usually about her dogs, what she was painting or things like that. I didn't realize she was choosing things that were easy to discuss so that I wouldn't see she was gradually slipping away.

Before long, when I did visit, mom would be outside in the shed with the dogs and never came inside to see me. I had to go out to the shed to say good-bye to her, and she’d apologize, making excuses for her epileptic dog. The same woman who walked me to my car every time I left for 30 years, suddenly wouldn’t leave the outbuilding to say good-bye. For some reason, I didn’t connect the dots.

I heard about my best friend’s death while at work. It was the middle of the day, and I elected to finish my shift since there was nothing I could do. I was crying so hard on the drive home that I literally had to pull over. I called mom and was met with the most harrowing conversation of my life.

Mom's condition had given her the illusion of my husband doing something horrible that never happened. Before she hung up on me that day, she told me she never wanted to talk to me again unless I was divorced.

She said: “I love you, but your husband is bad!” I never got to talk to my mother again before she lost what was left of her sanity.

Mom’s wild stories haunted me, she sounded so convincing she could persuade anyone. I couldn’t sleep, worrying about finding the police at my door, and eventually moved all the way across the state. I supposed that would please my parents since neither of them would answer my calls or texts anymore.

Mom’s bout with Alzheimer's and Dementia had stripped her of logic or reason, which played in my favor since she eventually forgot she was mad at me. Sadly, her swift decline caused a rift between her and my stepdad, and he put her out.

So, for a while, mom lived with my sister who is less than an hour-and-a-half from me. She came to my house a few times and we shopped and ate out. She couldn’t remember me until she heard my name, but then it was business as usual with her chattering and making at least a little sense. Sadly, I didn't know how very short that time would be. The last time I pulled away from my sister's house, mom stood in the yard with them, waving good-bye until she couldn’t see my car, and it was all I could do to keep it together.

In mere months mom’s brain had deteriorated so much she couldn’t walk and we couldn’t manage her. Within weeks of arriving at the nursing home, her health declined, and she was barely surviving with a feeding tube.

We were more fortunate than most. She still recognized us when we told her our names. She often tried to make conversation, but it came out as child-like, happy gibberish. For all that, she still sang along with me and made a little sense now and again. Still, I lost so much time because I didn't recognize the warning signs when we could’ve done something about it.

Mom’s gone now. She left us last Christmas. I know she still saw us in those last days, albeit through a very small window that grew darker every day. She was with us, waving goodbye until she couldn’t see us anymore and I just know that someday, we’ll see each other again, in another place filled with glorious light.

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The original version of this was published on Vocal before my mother passed away. This is definitely an important chapter from my life and I wanted to share it for the Chapters Challenge, not just because I wanted to submit something, but because it may help shed some light on the conditions of Alzheimer's and Dementia that often go unnoticed.

If you liked this story, you may enjoy reading this one!

Thank you for reading!