Remembering to Say Thank You
Before I Forget Because of Dementia
I was alone the day that I got the preliminary diagnosis of probable Lewy Lewy Body Dementia. My wife was visiting her mother in Ohio. Or at least I think that’s where she was. Now my mind goes through the process of wondering exactly where she was. She wouldn’t have been at either of our sons’ places because those would have been within two to three hours away and close enough for her to come home for this very important appointment. She wouldn’t have missed it if she didn’t have to. Maybe she was at our daughter‘s place in Austin, but I don’t have any memory of her traveling there. I’ll have to text her and ask her. I just can’t remember.
That’s one thing Lewy has done to me — it’s made me unsure of specifics. My memory is still in pretty good shape overall. Sometimes my word finder doesn’t work too well though. I can picture what I’m thinking of, but the exact word alludes me. Just yesterday I was talking to my mother-in-law who at eighty-six is much more progressed in her dementia journey than I am. I started to ask her if she wanted something — it’s an overpriced fruit drink in a bottle with a white label and black writing. The name is in all lower-case letters and it’s only three letters. Damnit. Why can’t I think of the name? This time she helped me out. “A Bai?” Yep. That was it. A blueberry Bai — her staple drink.
Despite my word-finder occasionally looking for words in all the wrong places, at this point in April 2022 as I’m writing this, I still have the blessing of my neurologist to drive. She sent me for a driving evaluation at the Moss Rehabilitation Hospital just outside of Philadelphia which I passed convincingly. The guy that was doing the evaluation wanted me to limit my driving to 5 to 10 miles around my home. I challenged him on that and asked why I would need to do that if by his own admission I was a much better driver than anyone else he’d ever evaluated who came in with a diagnosis of dementia. I know he was just trying to cover his ass. I get it. I considered asking him if he realized that statistics tell us that most accidents happen within 5–10 miles of a driver’s home and based on those statistics I’d actually be safer driving farther away. From what I’d learned of the guy in my two hours with him so far, I didn’t think he’d see the humor. Besides, I’d be lying with statistics which is something I implored students in my graduate research class not to do — this in spite of the fact that I often used the book “How to Lie With Statistics” as one of the required texts.
No one knows when I won’t be able to drive. It seems a lot of people think I’ll wake up and forget where I was going or worse — how to get home. Worse yet, they think I’ll get myself or someone else killed. I get it, but I think I’ll be more aware of the progression of the disease and will be able to make an informed choice with my doctors when it’s time. I’ve already told them that if I’m not aware, or if any of my friends tell them or me that I’m not safe on the road, I will trust their judgment and give up the keys when they tell me to.
My father-in-law didn’t recognize when his dementia started to affect his driving though. His name was Ed, but I never called him anything Pop ever since grandkids entered the picture. One day, Pop and I were getting the family ready for a trip to West Virginia to see family. He wanted to run to the mall to pick up a couple of things for the trip and I rode along with him. If his Toyota Camry from that time has not yet been junked and crushed, I’m certain that passengers probably say to the current driver, “Hey, what are these holes in the dashboard from?”
“No freaking idea,” says the subsequent owner of said Camry. “They were there when I got the car.”
Those holes in the dashboard and the ones in the leather-upholstered door handle were made by my fingers digging into them with the force that adrenaline-induced fear can bring forth in a person who thinks he’s going to die. Pop was becoming increasingly distracted and was fiddling with something in the car that wasn’t perfect to his liking. This was a common occurrence. Pop was rarely satisfied with anything, and even if he was almost satisfied, his engineer brain knew he could improve it with just a little tweaking. “Pop,” I said, “Pull over and let me drive.”
“Why? What’s wrong,” he asked.
“I just got a text from Jesus. He says he’s tired of me calling out his name.”
He pulled over and let me drive without the slightest clue what I was worried about. I hope that won’t be me.
Many of my friends in my Facebook Living with Lewy group chastise me for still driving. Others who still drive tend to stay silent when we’re in our weekly Zoom meetings. They see the lashing I’m taking and probably think to themselves, “When will Chris learn that this is not a topic to bring up here?” They probably think I have dementia or something and forget each time. Hmm… maybe. The ones who try to dissuade me from driving say that once I got the diagnosis that I should have handed over the keys. I remind them that I was fortunate, or perhaps unfortunate depending on the perspective, to have been diagnosed very early in the disease. My doctors tell me that because I’ve had more education than many people and because my job as a professor was very cognitively demanding, I noticed the problems long before most people would have. I’m very torn on whether I think this is a good thing.
I’ve gone through periodic episodes with Lewy when I’ve thought I should stop driving. I’ve even ridden the buses around town to acquaint myself with where I can easily ride the bus to, and where I might need to when the time does come that I have to give up the keys. In planning where I think I’d like to eventually move, I’m looking at smaller communities — probably on the east coast of Florida south of the Kennedy Space Center where the Uber distances to grocery stores are shorter. I do have more friends in Orlando, having done a six-month sabbatical at the University of Central Florida in 2016, but Orlando is so spread out that getting around without a car is a challenge even for true public transportation aficionados. I tried to get around in Orlando using public transportation a few weeks ago to check it out. Complete fail. I Ubererd my butt over to Orlando International and rented a Chey Spark — a car almost small enough to put in the back of a Honda Odyssey.
For now, though, my doctors, as well as my counselor and my long-time psychiatrist all agree that I can continue driving as long as I remain aware of when I’m having a “Lewy day,” and if I promise to report any “anomalies” to them if they occur. By anomalies, they mean things like not seeing people crossing the street and almost running over them, not being able to keep the car between the lines because of visual perception problems, or seeing imaginary people and furry animals cross the street that aren’t really there.
Hallucinations of other people and small furry animals are common in Lewy. I haven’t had these visions yet, and I’m a little disappointed. They sound kind of cool. I’m sure I won’t think they’re cool when and if I get them. I did have an allusion of a bullfrog jumping across the yard on a cold night in November, but my brain figured out pretty quickly that frogs aren’t out when it’s that cold — unless perhaps it’s a frog with dementia affected by a malfunctioning autonomic nervous system. The frog was just a brick that my dog had pulled across the yard by getting her outside leash hooked around it. When I finally “see” real hallucinations, it will not only mean by driving days are over, but it’ll also mean that the Lewy bodies are winning in their menacing little game of Pac-Man, gobbling up — or rather — checking into and setting up house in my cerebral cortex. It’ll probably also mean that I’ll be the grumpy old man telling kids to get off my lawn. The kids won’t mind. They probably won’t even really be there.
On the evening of the first day of the difference knowing between Lewy and not knowing Lewy, as I said above, I was alone. I cried. A lot. I sat at my dining room table while my dogs sat at my feet wondering what was wrong. They pawed at me which at the same time comforted and annoyed me. I was deep in shock and grief and doing everything I could to make it worse. I read a lot on the internet and saw that according to estimates I had about five to eight years left. Worse, I pulled up the Tim McGraw station on Pandora and waited for “Live Like You Were Dying” to come on. I used to fantasize before getting my diagnosis, that if I ever did get such news, that’s how I’d want to live — to squeeze every bit out of life. Skydiving? Maybe. Riding a pissed-off bull — not likely. Hiking in the Rockies sounded nice though. Maybe even horse-back riding in the Rockies. The tears flowed as I remembered doing the two-hour and then the four-hour horseback ride in Rocky Mountain National Park with my grandson. I remembered how bad my butt hurt for days afterward and wondered if I’d ever get to do that again.
I listened to many other songs that made me cry that night — “The Dance,” by Garth Brooks, “Broken Road,” by Rascal Flatts, “I Believe,” sung by Andy Williams.
I also thought about all the people in my life that I would miss. I grieved over the thought of leaving my wife a widow and my kids and grandkids without me around. I grieved over the realization that my job sharing my love of teaching kids with special needs with future and current teachers would soon be coming to an end. I grieved about so many things I wouldn’t be able to do. I grieved more about things I had done that I shouldn’t have done and wondered if I would have time to make amends or implement changes.
The next morning the dogs woke me, particularly, Zelda, the chiweenie — a black and brown chihuahua-dachshund mix who liked to tell me it was time to eat by sticking her wet tongue deep into alternating nostrils. It’s a startling way to wake up, I assure you. I moved slowly, more dragging my body than walking downstairs to first let them out and then feed them. After those tasks were finished, I gradually woke up in large part to the smell of coffee brewing. I sat down in the same spot where I had watered the table with my tears the night before and began reflecting. My mood was different. Light filled the room and pushed back some of the dark power of the news of the previous day.
Thinking about people in my life as I had done the night before, but with a feeling more of gratitude than grief, I began making a list of people in my life that had influenced me. Some of the people on the list would recognize that they had made a difference in my life, but I’m sure there are many who if I sent them a thank-you note for what they did to support me in either a big or small way, would be gobsmacked at actually receiving a note in which I shared the story of what they did and what it meant to me both then and now. Some would have to be post-houmous notes. In those cases, I decided that I would try and locate their children or closest living relative and send the note to them. To the living, I would send an actual note or card if I could find their address or an email if I could find that. The list quickly grew to over a hundred people. I determined that I would write one note a day and perhaps more on some days.
I wrote one posthumously on Howard Fink’s obituary page. Howard was the first psychologist I ever saw to deal with depression. As I think about this now, I thought that I wrote this after my Lewy diagnosis and after my decision to write the thank you notes, but when I searched for the obituary today, I find that I actually wrote it in April 2018 several months before my diagnosis. I guess it was a good idea then too. This is what I wrote then:
“To Howard’s Family,
I first met Howard when I was a young Lutheran pastor struggling with depression and fear. Howard was the first of many psychologists and counselors who I’ve seen over the years in my attempts to heal from mental illness.
I am now writing a memoir of my journey of recovery from depression. This morning I’m remembering and writing about my time with Howard. He was so compassionate, so wonderfully funny in the ways he challenged me to think about my life.
He set me on the path, and he is in large part of the reason I am still alive.
I regret that I didn’t seek him out again in these past years to tell him how important he was to me and how much he helped. I thought it important that I not make that same mistake and so I am telling you as a representative of the thousands of lives he touched, that he was a true light in a sometimes-dark world.”
I have yet to fulfill the promise I made to myself that day to write my daily thank-you notes, but I have recently received several notes from students who have learned of my diagnosis. I cherish each one and each has been life-affirming and has filled me with such warmth and care that even thinking about them fills my eyes with tears now. I need to start now. Who knows how much longer I’ll have to fulfill promises to myself? It will after all, at some point be too late to say “thank you.”
