"My brain used to be my best friend, and I don’t trust it anymore. There’s no chance of reconciliation. I yell and scream at my brain every day."
You hear the term, in the moment, a lot with this disease, and it’s often used to describe Alzheimer's and the fight to stay in the moment, and I battled with this, this morning. That thin-minty taste of mouthwash washed over me at 7:15 a.m. as I inadvertently reached for my razor to brush my teeth. Somewhere in the recesses of my brain or out on Pluto, I finally realized that that was not a good idea. I’m worried about the day when I think that it is. It’s hard for me to talk about this, but if nobody does, then we don’t go beyond the moment in this disease. Some of my progressions are off camera, outside the range of others because in the moment, I can still shield the view of some of it from others but not forever. I’m coming to find that out. This disease creeps like a monster and then it pounces.
Alzheimer's stole my maternal grandfather, my mother, my father, and my uncle, and now it’s coming for me.
In 2009, I was diagnosed with younger-onset Alzheimer's after experiencing the horrific symptoms of short-term memory loss, inability to recognize individuals from places I’ve known all my life, difficulty completing simple tasks, terrible judgment, confusion with time and place, withdrawal, and challenges with problem solving and spatial relationships. A battery of clinical tests, SPECT scans, brain scans confirmed the diagnosis.
I also carried the marker gene—Alzheimer's marker gene, ApoE4, which appears to be on both sides of the family. The diagnosis came two weeks after I was diagnosed with prostate cancer.
Alzheimer's is not the disease the public once thought it was. Yes, the end stage brings death. The early stages bring horrific pain, suffering, trying to keep one’s self and one’s family from falling into a black hole. Many of those stricken like me are still able to talk, still able to write, still able to think, all in between short circuits in the brain and the loss of synapse that continues to kill neurons. We’re not stupid, folks. We just have a disease.
So what is Alzheimer's?
How many people have ever been down in the basement doing your laundry at night when someone up in the kitchen didn’t realize you were down there and shut the light off? What do you do? I drop F-bombs, but that’s Alzheimer's in the early stage. The light is on. The light goes off. The light is on. The light goes off. You scream in rage to try to turn the light back on, knowing all along that someday there will be no one upstairs to turn the light back on, and it goes off forever, and that’s Alzheimer's.
I fly into an exorable rage when the light in my brain goes out. At times, I see things that aren’t there. The most disturbing symptoms in my private darkness are the visual misperceptions, the playful but disturbing Stephen King-type hallucinations, seeing, hearing, smelling, tasting, feeling things that aren’t there.
My brain used to be my best friend, and I don’t trust it anymore. There’s no chance of reconciliation. I yell and scream at my brain every day.
I used to think of my brain as a big garbage can. Just think of one of those big, green, plastic garbage cans that you’d throw all sorts of stuff into, and I put trivia and jokes and good things and things that people don’t care about, everything in there, but now, in Alzheimer's, the brain’s ability to process is greatly diminished. So I think of my brain now as a flower vase, and I think if you fight for it, you can pick and choose what you want to put into that flower vase.
The doctors tell me—they say that I’m working off a cognitive reserve. It’s a blessing from God. It’s a backup tank of intellect. Think of a boat. It’s like a backup tank of fuel on the boat, and they told me to slow down because when the fuel tank is gone, and I’m starting to see it drain, that you’re done, but my brain has to process at a high level, and if I don’t stay on it in the moment, push myself every day, I drift backwards. And I think that’s important for researchers to know with some individuals, remember there’s no two types in this disease. There are many of us, to stay in the moment, have to hit that gas pedal everyday as hard as we can or we drift back.
The Pluto metaphor is important for researchers to understand because it is the place that most of us in Alzheimer's go when we can’t be in the moment. You drift out. You just drift out. Some of us who are trying to stay in the moment when that battery is dead, we drift out. Others who just don’t have the capacity for that—there could be other medical complications—drift out, and so I had to invent a place that I was comfortable with. And when I was an investigative reporter, I had a fascination with Pluto, so I call it Pluto, drifting out to Pluto where no one can hear what is said, and so I want my family and friends to know that one day when I don’t come back, where I am. And the Pluto metaphor still works more than ever as I seek the isolation and pursue the urge to drift out as Alzheimer's overcomes in intervals.
We still have a long way to fight Alzheimer's. To fight an enemy, one must study the enemy and have working strategies in place.
I use daily exercise and writing. They’re my succor to reboot the brain and reduce confusion, so I try to stay locked in as a missile is on target, but locked in likewise is a medical term in which an individual who cannot speak because of paralysis, communicates through the blink of an eye. Some days, I find myself between definitions using every available memory device, strategy, and cerebral and handheld to communicate.
I rely on copious notes. My iPhone here and God bless Steve Jobs and my Mac Book. You’ll never—they’re my brains, and I tell people that my brain today is like an iPhone. It’s still a sophisticated device, but it has a short battery. It pocket dials and it gets lost very easily, and then my laptop here.
What I do is I journal every hour. Anything that happens to me, I write down. I have 5-6,000 pages of notes in here from which I use to write my books because in the moment I know if I don’t write it down, it’s going to be gone. After the gym, I write every night.
You know, years ago I thought I was Clark Kent, award-winning reporter, who feared nothing, but today I feel more like a baffled Jimmy Olson, and on days of mud, I’m more like Mr. Magoo, a wispy cartoon character who couldn’t see straight, exacerbated by a stubbornness to acknowledge a problem or like a codfish landed on the dock.
My life is slowly changing today, yet remains the same, a slow demise of who I once was.
One of the struggles for my family is loss of filter, which I’m sure you’ll get them to talk about.
So I would say the rage issue has been my biggest issue. It’s very disconcerting when he flies into these unbelievable rages, and it’s understandable so you just have to be calm and listen, let him get through it.
The anger comes when we try to tell him what’s the right way or you’ve made a mistake, and that just sets him off. He doesn’t want to know that he’s wrong and that he can’t make decisions anymore.
Well, I know I’m wrong, but I don’t want someone to tell me because it’s a reflection of the disease.
Is there a trigger for the rage or is it just something that happens?
Well you can speak to it obviously, but I find that it’s–we’ll be talking about something, and he just starts saying I’m confused. I’m confused. I’m confused. And then that gets him more worked up because he knows he’s confused and he can’t figure out.
When I know he’s upset and he’s in rage and I want to help him. All I want to do is help him, and the same—you would say the same thing, just like well, what is the problem? What can we do? And he just—he kind of shakes it off. He’ll go into a rage, and I can’t do anything if he doesn’t tell me what the problem is and how I can help and so he’s—
But I—everyone’s different. I don’t want to burden the family.
I’m going to fight this thing, and when I’m done, I’m done.
This gets back to your stubbornness.
That’s what I’m talking about.
Wow, this is like a church intervention.
But the equalizer is sense of humor. If you make Dad laugh, he could be in a pit of rage, and then it’s like boom. He’s back to square one, right?
In your book, there was a passage that really struck me. It’s when you’re with your parents, and the doctor mentioned about prolonging life versus prolonging death, and that was just so powerful, and I’m wondering how are you living that? And what do you do in situations where you find yourself prolonging the death?
That’s a good question. I don’t know why, but I’m not afraid of death. I think I’m the most imperfect person in the world, but I’m not afraid of death. I believe in heaven.
I have tried to leave the planet a couple times and was told it’s not your time, so shame on me if I don’t do stuff like this. As a writer and journalist, if I know how to explain things to people, shame on me if I don’t.
I don’t know if that answers your question, but it starts with I have a fear about a lot of things, but I don’t have fear with dying, so it’s like a reporter. I’ve just been given an assignment by my editor, so my job is to do it as best I can.
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My husband, like Greg, had a very high functioning brain as an attorney for almost 40 years. I suspect that he had AD for several years before it became too obvious for him to hide. He practiced law and would absolutely get it together when meeting with clients. It was amazing to think about after the fact. I think he was so relieved to finally retire because it was very hard for him to "perform" for clients and colleagues. He seemed to lose some cognitive ability soon afterward. Today he doesn't remember a lot of clients but if I ask him a question or try to discuss any legal issues, he seems to have the "light" switch on if only for a few minutes. This was so aptly said by Greg and I never thought of it this way. My husband is tired and wants to sleep and isolate himself most of the day. I think it is because he doesn't want to engage with people because of his confusion. He goes to dialysis 2 days a week and doesn't engage with any other patients there. It is frustrating for me to watch the decline especially when I think he could benefit from activities. I am still trying, though.
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