Recognizing Dementia—Every Journey Begins Somewhere
The Time Came ...
One morning, in August of 1999, I was awakened by a muffled “thud” that came from somewhere in the vicinity of my mother’s bedroom. There was something about the sound of the noise I heard that made me know something terrible had to have happened. My bladder responded to the thought, and I knew if I didn’t go straight to the restroom, I was definitely going to soil myself. But something wasn’t right across the hall from where I was, so I had to go there first. Instead of heading to the bathroom, where I really wanted to go, I tightened my insides to hold the flow as securely as possible. Then my feet hit the floor, bounding toward my mother's room.
My mother had always been my best friend. Oh, don't get me wrong. She was first, last, and always very much a mother to me. You know, the normal, every day southern-raised kind of eyes in the back of her head, never let me get away with anything, set me straight about any and all wrongdoings type of mother. But she was also the best friend I or anyone else could ever have. As a best friend will do, she often tried to warn me, to prepare me for things she felt I was not preparing myself for, and would not be ready for if or when something happened.
My mother's warnings would usually begin with her telling me about how, one day, "the time would come" when she would no longer be able to do this, that, or some other thing she'd been doing all her life, for herself. Whenever we'd have one of those "the time will come" conversations, I usually tried to get past the thought as quickly as possible. My mother knew this about me, so she'd try to get out what she wanted me to hear as quickly as possible. She knew I didn't even want to think about such a time coming. After all, in my mind, my mother was the poster child for self-reliance and independence. How could she possibly expect me to be able to accept that one day she wouldn't be able to do for herself? "Not gonna happen!" is what I was always thinking.
What Brought Me Home ...
In the summer of 1997, I paid to have a U-Haul attached to the bumper of my Bonneville. Once that was done, I stuffed as many of my belongings as I could into it, and I drove home, all alone, from Gainesville, Florida, to Silver Creek, Mississippi. My mother was 78 years old. That spring, she had started exhibiting signs of memory loss, signs that family members had noticed. My aunt—my mother’s only living sister, had called and told me she was concerned. So, once the school year ended in May, I resigned from my job as an assistant professor at a university in Florida. I’d been there five years and had already decided not to apply for tenure. I knew for sure I didn’t like Florida and wouldn’t be returning there, no matter what. I also wasn't sure I wanted to continue teaching. All I knew for sure was that my mother needed me, and that I needed to go to her.
On the drive home, I sketched out a plan to use my summer break from teaching to find a way to do all I could to take good care of my mother. I figured I’d take her to a good doctor or two, and those good doctors would then put her on some good medicine so that she could go back to being her good old self again. After she was back to normal, I figured I would get a new job somewhere and leave good old Mississippi, for good, once again. The best laid plans of mice and men ….
Dementia is Not to Be Ignored ...
That morning, in August of 1999 when I found her lying on the floor in her bedroom, I knew immediately what the awful "thud" had been that had awakened me. Seeing her crumpled and lying on the floor, I knew why that sound had ignited dread and foreboding deep in the pit of my stomach, of my soul. I didn't want to admit it to myself. Not then, or for several months after that morning. I wanted to ignore it all, to not listen to it. But deep down inside, somehow I knew. One of those awful times my mother had tried to warn me about had finally come.
My 80 year-old mother was looking up at me from the floor, actually forcing a smile. But I could tell she wasn’t all right behind that smile, even though she was doing her best to make me think nothing was wrong. As soon as she saw me she started explaining about how she didn’t know why she had fallen. No, she didn’t think she had tripped on the throw rug she kept on the floor, but then, she guessed maybe she could have. At five-feet-eight, my mother had long limbs, but at that time weighed less than 130 pounds. At five-feet-four and about 139 pounds, I was considerably shorter, but stronger because of my youth (I'd never married, had no children, and was a very "young" 43). She talked and laughed about her fall as she did her best to help me help her up. By that time, even I had started to feel that maybe she was all right. You see, my mother was really good at making me feel there was never a need to worry about her. As her child--as someone who wanted, desperately, for her to actually be all right, at that time, I chose to believe her.
Memory Loss and More ...
The morning she fell, after I helped Mama get fully to her feet, she told she needed to go to the bathroom. It wasn’t until she said that that I remembered my own urgent need. I tightened my insides against the flood that was trying to break through. Now that I knew Mama was okay, it seemed harder for me to stem the tide, but I squeezed my insides tight and helped Mama get to the bathroom inside her bedroom first. After helping her get onto the toilet seat, I hurried out of the room as fast I could to the hallway bathroom, the only other toilet in the house.
I studied the tiles on the floor as my tightly expanded bladder emptied gratefully. I thought about how, with his own hands, my father had helped to build the home where my mother lived. My childhood home: A four-bedroom, red-brick, one-story home in Silver Creek Mississippi, on the outskirt fringes of the town of Monticello, Mississippi. A cement mason by trade, my dad dabbled in carpentry and in the laying of tile and bricks too. But if the handiwork I was staring at on the bathroom floor was evidence of his tile-laying skills, then he wasn’t that good at it.
In the years since he passed away (which was one month after I turned 14), my mother had often voiced to me and my siblings her “wish” that he had allowed the people he’d hired to build our home, to build it. There were several places on the floors in several rooms where tiles didn’t meet, closets where there were missing rows of tiles, and places where little specks of tar dotted the tops of tiles.
I sat staring at one of those little tarry places for a very long moment. All I could think about was the fact that those little spots of tar had rested for many years on a square of tile that didn’t quite line up with the bottom of the bathtub. It was something that had always irked my mother to no end, and there it was, still there after all these years. I was done urinating, but I couldn’t seem to move. I was scared. The tar was still there, the tile still wasn’t meeting the edge of the bathtub, and my mother hadn’t fussed about it at all in the nearly two years that I had been home with her.
Things were not right. Not at all—nothing was right. She was changing fast, too fast, and now she had fallen down. The fact that I'd heard the fall she’d taken meant that it was a hard one. I was afraid she might be hurt, even though she was pretending not to be. I feared she was doing a very good job of pretending not to be hurt. She never wanted me or any of my siblings to worry about her, ever. She never did, even when she was much younger and could remember to call me by my own name, instead of by my youngest sister’s name as she was doing a lot since I’d moved home to look out for her.
Some of the Visible "Early Signs" I Wanted to Ignore ...
1. Unable to recognize family members, or regularly unable to recall the names of those you know well, see often. We wanted to pass this off as, "Oh, she was probably just really tired," or "Was she wearing her glasses?" Family members my mother should have known, like my half sister, her oldest daughter, she did not recognize at a family reunion.
2. Unable to remember simple rules of driving. I was told, by my brother, that someone told him my mother had driven on the wrong side of the road from somewhere near the small town of Monticello, Mississippi, to a point close to her home (which was several miles from that town). Thankfully, either there were no other cars on the road, or perhaps only drivers who saw her in time to avoid hitting her, head-on. Once I moved back home to care for her, I drove her where she wanted or needed to go.
3. Behavioral changes. My mother was always doing something, or planning her next activity. But for the first six months that I was home with her, I would often find her sitting somewhere that seemed unusual for her, such as in a chair placed inside the garage (of all places). An avid, regular churchgoer who had always been active in church activities, my mom got to the point where she did not want to go to church. I believe it was because she could not remember the names (or even the faces) of the people she saw there. People she knew she should know.
My mother knew that I—her middle girl, had always been chubby. But I had lost a lot of weight, from over 200 pounds to my current weight, which at that time was much smaller than was usual for me. I chose to believe that was why she kept confusing me with my younger sister. Since the girl taking care of her looked thin, not chubby, she mistakenly called me by the name of my younger, thinner sister. After years and years of wearing size 14 and over, I was fitting comfortably into single-digit sizes, so I forgave the name confusion.
It was all right with me. In some ways, it was a compliment for Mama to mistake me for one of her slimmer daughters. So, I came whenever she called my sister's name, and to me, that's all that mattered. But that wasn't all, and I was finally having to face that fact. That morning I was coming face-to-face with reality, in my own way. The Aricept that I had gotten the doctor to give her a few months after I got home, the good medicine that had worked well for over two years in bringing my mother's mind back--and bringing her back to me, wouldn't be able to keep her with me for good. I very worried; so worried I couldn’t move.
Why hadn't I been there to keep her from falling? Wasn’t that the reason I was there, at home, instead of somewhere else teaching at some university—like I'd done for the past decade? How could I have allowed this to happen? My mother was moving—swiftly, farther, and deeply into old age, and there was nothing I could do to stop it. I’d lost all control and was now sitting motionless, staring at a piece of floor tile, consumed with heartache and worry.
And the tile around the bath tub? It was still speckled with little drops of tar, still crooked, still sitting there as a visible sign there were things in this world that bothered my mother, that I couldn't do anything about. It also told me, then and there, that in the two years I’d been home, Mama hadn’t once complained to me about the shoddy tile work my dad had done. That meant there was a lot more wrong with her than I was able to see, or that she was allowing me to see. My mother had always had an "iron will," and I was finally realizing that it had simply come to her defense. It was helping her hide what she did not want me, or anyone else, to see.
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Note: Mama passed away in 2000 after finally being diagnosed with late-stage brain cancer. What I went through in the years when her doctors thought her condition was caused by dementia, however, taught me a lot about caring for someone with memory loss.
Copyright, 2013, Sallie B. Middlebrook, Ph.D., all rights reserved.
© 2013 Sallie B Middlebrook PhD