How do you define the beginning of a fog? It’s not something you can really grasp.
It is different for everyone. You know one person with dementia and you know one person with dementia. There are no easily defined beginnings.  Sure, there are “symptoms.” Symptoms are signs. Signs that say you are headed in a wrong direction. But there is no turning around.  And no one gets out alive.

There are escape routes, however; but they all lead to the same place.
And between here and there, a series of tiny deaths along the way.

We have acronyms now for conditions and levels of self destruction, or is that, the destruction of self.

The sense of self – or how we make sense of our selves – slowly deteriorates.
Somehow, giving it a name makes it more real.  Levels provide a means of charting the decline.

People who live with it need no names or arrows. It is very real when the borders between real and unreal become less clear.

MCI – mild cognitive impairment. My mother called it CRS – can’t remember shit.
But it’s more than CRS when you can’t trust your own mind – or when you think you are thinking clearly but others are scratching their heads.  Looking back, perhaps I should have recognized that the logic center of the brain – the part that makes rational decisions – was starting to shrivel. 

But my mother made many mistakes in her life. We don’t always know they are mistakes until we look back; the rest of us should not be so quick to judge; her intentions were always good. But they caused her to dwell in the land of regret a lot, particularly every holiday, and most particularly Christmas.  My brother and I grew up in what I am realizing is more norm than unusual in terms of disfunctionalness, a word which I am now creating, over which my mother thrashed herself frequently.  I assured her that she did not destroy our lives on purpose, a comment that was not taken humorously. After all, no one runs off and marries a gay Mormon alcoholic on *purpose* for Pete’s sake! Or maybe they do. But lest I digress…

According to recent research, chronic stress increases the expression of the amyloid precursor protein (APP), the abnormal processing of which contributes to the development of Alzheimer’s disease (read the recent post at ouroboros). 

We were headed to Hades in a handbasket on the Stress Express.

Mom had left the gay Mormon alcoholic behind and had settled into a comfortable marriage with someone who seemed relatively normal and true blue, if not a bit boring. Twenty years went by as 20 years will quickly do – and they were looking at retirement in a town by the sea, about a 5-hour drive away.  I usually saw her a couple of times a year and we talked once a week or so on the phone. We weren’t all that close for reasons that don’t need to take up this space, but we kept in touch.

And then one day her husband declared he was leaving her for his childhood sweetheart, with whom he had been having an affair for the past 10 years or so. Mother was blindsided. She seriously had no idea.

So there she was on her own, and this person who had always prided herself in her intelligence, who was a voracious reader, volunteered for Hospice, was a gourmet cook, and kept an immaculate house – was suddenly at a complete loss. What happened to this person I knew as a kid, the single mom working two jobs and multi-tasking everything from hospital emergencies to camping trips? Well, for the past 40 years, as typical for her generation, she had let the men in her life do all the manly things – like fix the faucets, make decisions, and control the money.  Women get good at dusting.  Now she had to figure out how to balance a bank statement.

First off, though, she needed a new car. “I found the perfect vehicle, Mom,” I chatted away one day.  “Meet me half way.” We connected at a little coffee shop on the corner of a not-too-busy street; I gave her a little Geo Metro that would get her great gas mileage and be perfect for going to the store and the post office; I took her beautiful retro Camaro, which I had coveted as a teenager, but which now, I saw, needed an overhaul.  There was only one hitch. She had never driven a stick shift. How can this be – someone who was in their twenties in the 50s never have driven a stick shift? Maybe she just forgot. I gave her a crash course, a kiss goodbye, and a “Good Luck Charlie!” wave farewell, and away she went, jerking a bit at first, but then roaring off.  One thing for sure, my mom had guts.

“The world is passing me by,” she said one day, realizing the health care field was rapidly changing and the world had been transformed by technology. So I bought her an inexpensive computer and patiently explained how to use it.  I labeled everything and wrote out detailed instructions.  Moving the mouse across the screen was a source of great anxiety. It would zip across there with a mind of its own, and then the next thing you know, everything would disappear.  All she wanted to do for now was inventory her household things and recipes. She decided to take a class, which was lousy because the teacher was focused on those who already knew everything and didn’t make time for people like her who were mere beginners. Or so she said. In the end, the box of mystery was an expensive solitaire game, which she was glad to give to the kids for their schoolwork. “Computers are overrated,” I told her. “Paper and pencil work just as well.” But I couldn’t help but notice she wasn’t writing much these days, nor reading for that matter.

My mother was the master of hiding. Hiding her feelings, her fears, what was really going on. When I was little and was upset, she used to send me to my room and told me to come out only when I could put on a happy face. I, too, learned to hide things.  I learned to recognize her “happy face” look.  I noticed it a lot these days.  It’s the “I’m fine” look.

I also started noticing a change in speech.  This was something she could not hide. Forgetting the right word, she would try to substitute a description instead. I found myself filling in the blanks. She actually sounded relieved when I did this.

And then she got involved with someone I’ll call “John.” John was smart, had traveled all over the world, had made (and lost) a small fortune, was a gourmet cook, a connoisseur of great wines, was well-read, artistic, a writer, and a master at the computer. He was everything her ex-husband was not. He also had a bit of a gambling habit, and he wasn’t averse to using someone else’s money to get what he wanted. Mom explained to me that they had decided to live together because neither of them had a whole lot, so together they could live on a lot less. They each sold their houses in the seaside town; John helped Mom close down her bank accounts and stock options; together they bought some land and a modular home only about an hour away from mine.  The place needed some work, but did I fail to mention he was also an expert carpenter, craftsman, and had sailed through the Isthmus of Panama on a yacht – in fact, he designed yachts – and built them, too.  It was a good thing Mom had the money to finance this little endeavor, because apparently he was waiting for his next breakthrough, and in the meantime, could avoid taxes by earning little or nothing. 

Only Mom was not a gambler. In fact, she was rather conservative. She enjoyed a good meal and a glass of wine now and then, but was extremely frugal.  She had lived in the dusty plains of Colorado during the Great Depression, when all they had to eat were potatoes, which grew underground where the grasshoppers couldn’t get them, and wormy rabbits, which had nothing left to hide behind.  The only thing she blew money on was her nicotine habit, and she was trying to quit that one. She did not buy new clothes, gourmet food, fancy tools, or invest everything she had in a dwelling and leave nothing for emergencies. Normally, this would not have made sense. But it was the man’s place to make decisions, even if he was impotent, a detail I preferred not to know. Gambler she was not, but – and this is a big but – she was willing to take a risk on this person. “Nothing ventured, nothing gained.” I can still hear her gaily saying that.

John, on his part, probably loved my mother at some level. He loved her intelligence, her sense of humor, her caring ways, and of course, her generosity.  She was getting a little scatter-brained, but it was kind of cute, and he liked having someone who looked up to him and whom he could care for.  He did not, however, sign up for complete debilitation.  But as I was to understand, John served a purpose. 

And then shadows of fear started to creep in.  She could not keep track of the money, which he spent with the fervor of one who was used to living lavishly.  He assured her that everything was documented on his computer, but the computer was locked under a password.  He seemed to spend long hours in front of it and got angry when she interrupted his “work.” The screen would suddenly go blank when she walked in the office door.  He also got angry when she interrupted him creating his gourmet presentations, which the meals had now become; he got angry when she disturbed his concentration during household renovations; in fact, there seemed a lot of things to be angry about.  The manic in him was one thing, but when he revealed that he had lost his fortune when he had gotten violent with his live-in partner of many years – she had committed the ultimate betrayal and ran off with all his money – or maybe it was court-ordered compensation – whatever – that was when Mom started to see his darker side. And at that point, that was all she could see.

Mom’s fear mushroomed from the nucleus of her being.  She could no longer complete a sentence. We talked frequently, our conversations becoming more and more one-sided in our secrecy and in decoding what she was trying to say.  I filled in the blanks continuously.

On the homefront, other sagas were unfurling. It was the end of August, and I had to drive to Montana to take my son back to his father, who had custody during the school year. It was always a traumatic time for the two of us. He was in 7th grade now, but had lived away from me since he was only four.  Our summers and other vacations together were precious, if not unrealistically hectic trying to cram in as much quality time as possible in the course of 2 ½ months.  At the same time, my husband was having an attack of Crohn’s disease. He was vomiting and bleeding and had dropped 50 pounds in a couple of weeks. We weren’t sure we could stop the train. It was barreling out of control.

I called Mom and told her to pack some things. This was not working.

I drove the 11-hour drive to Montana to return my son; the next day I drove back; the following day I drove to visit Mom. “She’s coming up to help me out for a few days,” I explained, and we returned later only to get her things.  John was conspicuously absent. Legal details were worked out later.

My mother lived with us for one long month. I can’t realistically describe how this time was for all of us. She was prone to panic attacks; she would zero in on meaningless small things, like a piece of lint on the carpet, and spend hours and hours cleaning, cleaning, cleaning.  Our house was not that dirty. Ok, I tend to collect a little clutter. But not dirty. And amidst all this, we were somehow trying to replace the roof on the house. She would get in the way, picking up little pieces of broken asphalt on the ground. Trying to be helpful.  Mostly just trying to be busy.  Trying not to think.  Trying to think.  Trying not to think about not being able to think.  We would try to give her something functional to do, but mainly we just wished she could sit and relax. She was uprooted. Homeless. In the way. Out of place. Losing control. Losing her mind…