A View of Alzheimer's and Dementia
As recently as October, 2021, Alzheimer’s and Dementia stepped up their game and began working hard to take our mother away from us. A lot of people know and love my mother as someone with an infectious smile and a laugh larger than life. 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, or her singing, laughing, playing pranks, etc., but one thing is certain, they’d definitely remember mom having to get the first and last hug and then waving good-bye until she couldn’t see their car any more. Those closest to mom understood her insatiable love of art and natural light.
When we were kids, mom preferred not to struggle getting us out of bed for school in the mornings. She developed a kind of ritual that seemed to work, and it stayed with her almost the entire rest of her life. The minute she was out of bed, Mom 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 would throw open our bedroom doors saying: “It’s time to get up!”, open the blinds or curtains and then make for the kitchen. We knew we had better get up on the first warning because the second wasn’t as nice as the first and if she had to come back… oh Lord!
Fortunately, it’s hard to sleep with daylight coming in on you so, we were almost instantly up… grumbling, but up. Before we were even completely out of the bed, mom had the rock and roll radio station going, daylight streaming from every window and she was running around the kitchen doing stuff. What that stuff was exactly, I can’t tell you. I was a kid and don’t really remember. I just remember that every day, daylight was coming in (when the sun was up), the radio station was loudly playing, and mom was in the kitchen with her coffee doing stuff. If the sun wasn’t out, every light in the house was on.
Mom has always loved windows and light. The more light the better, particularly natural light. She’s an artist so that shouldn’t come as any surprise. When I was not yet 5-years-old and still an only child, mom and dad took me downtown at Christmas time every year to look in all the shop windows.
Back then, snow-covered streets lined the Indiana downtown shops with huge window fronts that they dressed elaborately for Christmas. Mom had to see all the Christmas lights and decorations and breathe in the holiday feeling through those festive shop windows. Her family never celebrated Christmas like my father’s family did so the whole thing was still a wonder to her, just as it was to me or any child.
In fact, one of mom’s favorite things to do year-round, 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 down the rows of streets in the downtown area, (which was a highly sought-after area at the time), and gazing longingly at crap you’d never be able to afford. She always saved the lighting store for last because they had gorgeous chandeliers hanging in displays in the windows, and she was completely enchanted by the crystal-shapes and the way the light made them sparkle. Those were long days and sometimes the walking was murderous on my young feet, but it very often ended with her having coffee with one of my aunts and we usually got a little something from the candy store or the five-and-dime to take home.
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)
Of course, now the downtown area isn’t as sought-after an area as it once was, and the house had fallen into disrepair the last time I visited. One thing remained the same though, the entire thing was nearly smothered in ceiling to floor windows. The house had a turret on the left side of it when you looked at it from the street, kind of like a fantasy castle tower. The entire top floor of it was almost nothing but windows on the inside. 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 place up with as many chandeliers as she and my dad could afford to ensure that her house was totally bathed in opulent light. (It was many years later before I discovered that mom's childhood home was very dark and dingy.)
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, mom came from an unusual family dynamic and the stories she sometimes told of her difficult childhood made me cringe.
Determined to raise free-thinking, bright, intelligent children, mom altered her parenting as far from the traditional parents of her era as possible. She 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 within seconds and you would never have been able to take back any harsh word or action. Regret was a difficult thing to live with, and certainly something she didn’t want for her children. You could be angry with someone and still love them. In fact, she expected you to tell them you loved them even when you were arguing about anything.
Mom was nearly manic about making sure people knew you loved them. If someone was leaving her house, she, (and later my stepdad), would walk you to your car and make sure you were hugged good-bye and that they told you they loved you and to be careful going home, or wherever you were going from there. They would then stand in the yard and wave until they couldn’t see your car anymore. As a young adult trying to get kids in the car and get home before time to cook and things like that, I often found the good-bye rituals time-consuming and unnecessary. I used to think, 'surely after all these years, mom knows that I know she loves me!'
As early as eight months ago, my siblings and I went to mom and dad’s house to begin cleaning for them. Moms Alzheimer’s and Dementia had taken a turn for the worse and my dad had his hands so full with her things that the house had literally gone to the dogs… and cats.
The three of us and many of our children went for a couple of days to clean, rip out carpet, scrub, make repairs, do laundry, etc., and we could see then that my mother’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.
We’ve known for years that mom struggles with being hyper, having a short attention span and forgetting things, but it was never out of control before. When she couldn’t remember the name of a store or a restaurant, 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 I realized it was getting bad.
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 took a turn into a neighborhood I don’t remember ever being in and I was riding, enjoying the pretty houses, and then realized that I didn’t know for sure where I was. I had no trouble getting to the mall, but I can’t remember for the life of me how to get to the house from here.”
Not really a big deal. We’ve all been tooling, thinking about a thousand things and then suddenly look up and have to get re-oriented. The problem was that mom had gotten so upset, she couldn’t get reoriented. There were only about 4-turns between her and where her house was, but in her condition, putting solid directions together was a challenge.
I stayed on the phone with her 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. Hindsight being what it is, I should have been more concerned. Motoring was always another of my mother’s favorite things to do. She used to love to get in the car and just drive. With her sense of direction, driving abilities and her capabilities with a map, mom could navigate just about any city, sight unseen.
Within the year, my best friend of 12 years got sick. Over the course of several months, 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 I didn’t get over there much to visit.
Aside from taking food over there when they were sick, running a few errands, jamming guitars with my dad or the off visit to see family when they came to town, visiting mom and dad didn’t seem like such a big deal at the time. Mom and I talked on the phone just about 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 just about the dogs, her friend down the street, 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 that she was gradually slipping away from us.
Whenever I did go over to visit, my mother was always outside in the shed with the dogs and would never come inside to see me. I had to go out to the shed to say good-bye to her, and she would always apologize and say she just had to take care of the dogs. The same woman who walked me to my car every time I left for over 30 years, suddenly wouldn’t leave the outbuilding to say good-bye. In fact, if I hadn’t gone outdoors to see her, she would never have seen me at all. For some reason, I didn’t connect the dots.
The day my best friend passed; I was ill prepared to be met by my mother’s delirium when I called to talk to her. I had gotten the news of Debra's passing while I was at work. The call came toward the end of the day, and I elected to finish my shift since it was a Friday afternoon. 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 vapid conversation I have ever had with another human being in 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.
I started thinking about the wild stories that mom was telling and about how convincing she could be, and I didn’t want to wake up one morning with the police at my door, so I moved to a whole new city all the way across the state and didn’t look back. I supposed that would please my parents since neither of them would answer my calls or texts anymore, anyway. As time and fortune would have it, mom's decline prompted a rift between her and my stepdad and he couldn't handle her any more. Her bout with Alzheimer's and Dementia had stripped her of logic or reason, which played in my favor since she forgot she was mad at me.
So, for a while, mom lived with my sister who is less than an hour-and-a-half from my house. It was great because I got to visit often. She even came to my house a few times and I took her shopping and out to eat. 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 with her.
As I was pulling away from my last visit with her at my sister's house, mom stood in the yard with their family, waving good-bye until she couldn’t see my car, and it was all I could do to keep it together. Flash forward a couple of months and as fate would have it, mom was in a nursing home. Within weeks her health declined, and she was bed-ridden, surviving with a feeding tube. She still recognizes us when we tell her our names. She still tries to make conversation even though it comes out as gibberish. She'll sing along with me and make a little sense and laughs a lot with us when we visit. Still, I lost so much time because I didn't recognize the warning signs when there was time to do something about it.
I see my mom now and I know she’s still in there, that she can still see us through a very small window that grows darker every day. She sees us, and she’s waving good-bye until she can’t see us anymore.
If you have parents in this world, please watch for the signs. If they seem uncharacteristically far away, make off the wall comments, forget important dates or lose direction, get them a cognitive visit with a physician. They may be violent, rude or at times downright mean, but don't judge them too harshly. It may seem like they know who they are and what they're doing, but sometimes, that's not the case. Just love them even with all their faults and quirks while they’re still here and available to you. One day you may be driving away, waving good-bye for the last time as the window closes for good.
About the author
I'm a mild-mannered business consultant by day, a free-spirited writer, artist, singer/songwriter the rest of the time. Let's subscribe to each other! I'm excited to be in a community of writers and I'm looking forward to making friends!
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