Just two buttons…

…but it’s where we are right now.

Remember when I said the best way for Dad to Elder us is to give you an unvarnished look at real life without worry of protecting his privacy? With your help through your understanding and compassion, we’ll always be protecting his dignity—if not even enhance it through admiration and appreciation. But Elders cannot Elder in private; it takes courage and vulnerability sometimes (all the times actually) to Elder from a life lived in real time. This whole endeavor, Dad’s entire Journey Home right now has to be real, authentic, honest, and as it happens, heart-breaking. It is exactly as it is. Just this; just now. It’s the only way to Elder in a culture that is afraid of bad news, sad news, dying, and ultimately death. Eldering means you have to lean into the uncomfortable and bad and sad because all those things are simply all human things. As Stephen Jenkinson says, because being human is messy, uncomfortable, and yucky at times, if Elders don’t engage authentically amidst it all, that that would constitute, essentially, a “dereliction of duty.” And that could never be Dad. So…

It’s time for an update. Please lean in with me.

New Oxford American Dictionary, 2022

Here we go…again. The plain, straightforward, and unvarnished truth:

It’s just two buttons.

“It’s just two buttons Dad. One right on top of the other.”

But it might as well be a million—and miles away from each other.

Quick back story: in our region of the Pacific Northwest, on Friday, November 4, we had a major, MAJOR, wind storm blow through our area—sustained wind gusts at over 70mph for multiple hours. At around 10pm-ish that night, we lost power at our house. Not unusual in that our region has so many trees in close proximity to power lines—trees are beautiful, and you know of my affinity for them already, but partner them with human-made and human-placed, above-ground power lines and you get a crude reminder why Nature will always have her way.

We’ve been through many storms and are used to power flickering on and off so we weren’t that concerned at the start. Kristin and I both love the sound of storms (Sammy not so much)—but only when they behave themselves that is; this one chose not to do that. At some point that evening, as Kristin and I lay awake in bed listening to the storm, and while Dad was apparently sound asleep in his downstairs bedroom, we also heard a sickening crunch and thud just as the power went out. Assessing the damage the next morning, our house and compound came through it all rather well. Although we had a lot, A LOT! of debris (leaves, small branches) around, we lost no trees and there was absolutely no damage to the house, our roof, or any of the fixtures around our home. But, our little road into and out of our property leading to the main road was a different story. That loud crunch and thud we heard was a neighbor tree that came down onto a power line that also brought down a transformer.

And Dad slept through it all.

To cut a long story short, we got power back on to our home on Wednesday, November 9. We stayed in our home, sans power, through the entire weekend though (forced we were to listen to the Seahawks on the radio!). We have a gas stove so we could make warm dinners and drinks. It’s amazing to be reminded the gratitude one can have when you no longer have something you count on virtually every minute of the day and night—namely electricity. We joked with Dad that we had to eat by candlelight—the same way he had to when he was younger! He laughed. OR: “you probably didn’t even have a candlelight dinner with mom, did you Dad?” He lied and told me he did…once. Did I tell you I think he lied?

So we had a “romantic” candlelight dinner…just Kristin and me…and Dad…and Sammy. Romantic. Uh, yeah…cue Tony Bennett. (Actually we cue’d up the Seahawks’ post game show…but I digress).

We make a MEAN vegan spaghetti and savory sourdough pancake at the Club Med Lenseigne—with our without electricity. Note the cap…it was getting cold! But the Seahawks won!

On Monday, we were tired of waiting for the power to return, even though one begins to get used to the quiet (here again, Dad not being a reader didn’t help the boredom situation—Dad given time to think, TOO much time to think, isn’t a good idea); I looked at the situation on the roadway again and it looked like, in addition to a downed power line along the road, the lines that were down directly outside our gate were support cables and not carriers of electricity. And it looked like we could get our car around some of the damage safely (trust me, I wouldn’t risk this!) so we decided to pack up some over-night bags (and Sammy…oh, and Dad!), and headed to Kristin’s mom and dad’s (Patty and Lee’s) house in Bothell where we could wait out the outage in warm comfort—and in time for Monday Night Football.

That is also where you would find two buttons.

I didn’t think that was going to be a thing. So who knew? I mean, it’s just two buttons.

Lee and Patty have a recliner chair that is perfect for Dad. It’s automatic so once he sits, he has the ability to adjust the chair to fit his body’s needs—one would think. He sleeps in a similar chair at our house so this was perfect for Dad. It has buttons on the side for adjusting the recliner—two buttons. Just…two…buttons. One on top of the other.

Those two buttons did a very fine job of reminding Dad, reminding us (not that we needed reminding), that he has dementia—and reminding not just once, but over, and over, and over again. That’s what you get with dementia—constant reminding. And more of it.

Damn.

The chair and the buttons are simplistic by design so they can be situated on the outside of the right armrest—designed to be worked by feel. They are simple enough that brains shouldn’t have to see them in order to work them—unless, that is, you don’t have a “normal” brain; unless, that is, you have a brain on dementia. And even if you did have a brain with dementia, being able to look at them wouldn’t matter anyway.

These are all ways of defining dementia and it’s impact upon a lived life.

Dad has dementia—he will always have dementia and it will never get better. In fact…

In fact, there is clear evidence the dementia is progressing at a pace now.

In fact, all it took was two buttons. Because…as you’ve guessed…

Dad couldn’t work the buttons.

Damn.

I want to place Dad in situations where he has to work his brain on his own instead of me always coming to his rescue—so I often wait, watch, encourage, cheerlead, and verbally guide. All the while balancing his frustration levels because I don’t want his “inabilities” to overwhelm him. I showed him multiple times, hand over hand, how to feel for the buttons and which ones raise and lower the recliner. The buttons are not hard to find or to work—but I don’t have dementia. Dad can find them with his fingertips most times, not all; but then he cannot put together the synaptic connections in his brain to push the buttons in; or he pushes the down button when he wants raised up; or vice versa—or he feels the buttons initially but then continues to grope for them around the arm rest. I watch him do this and encourage him that he’ll figure it out. And then he gets frustrated. “Why the hell can’t I figure this out? Why is it so easy for you?” He’d try, to no avail, for 15 minutes if I left him to do it completely on his own. If I break down and place his fingers in the right orientation on the little panel, and then help him push the correct button (because even with fingers placed in the right place, he still couldn’t do it), he’ll shake his head in deep resignation when the chair finally responds. His silent reminder of who he is now.

He simply cannot figure them out nor is he able to keep in his memory how they function. Every time he wants the chair in a different position, this happens. Every time. That’s what dementia does—it robs a person of their memory, even muscle memory, even for menial and simple tasks and things; and then eventually, it robs you of your whole self. That’s where we’re headed. That’s what’s happening to Dad—the self he was is being erased, leaving behind a person who is experiencing his world for what seems like the first time. Every time he experiences it, it’s for the first time. Every time. But with lingering and transient memories of “wait, haven’t I done this before?”

It’s just two damn buttons that shouldn’t Ever. Be. A. Thing. And yet, the ARE a thing.

Watching him trying to figure it out, each time, was like watching a brain trying to search for the simple neuro pathway it thought it had created just 30 minutes ago when he had it…but that pathway no longer exists because dementia dismantled those synapses mere seconds after they were formed. The other parts of his brain, the cognitive, rational parts, kept searching…in vain. This is why, even had he worked those buttons hundreds of times before, with neuro pathways no longer existing, it is exactly as if he was experiencing the buttons, in fact the very CONCEPT of buttons, for the very first time. But while ALSO knowing he had done it before.

THIS is the paradox that is dementia.

My Dad has dementia. It’s progressing. My Dad’s beautiful brain continues to disintegrate and dysregulate—the synaptic connections that help formulate short term memory, and now, even longer term memory, are unraveling. It’s impacting his fine motor coordination, his gross motor movement, and his cognitive understanding of how the world works…how a two button recliner works. And this is a man who could multitask on a 2000lbs tractor, at speed, through hop fields, without even needing to look where he was going.

Other symptoms are showing up more intensely too, along with some new ones; but those, for another time. Today’s post was about two buttons. Just two simple buttons that have become the most complex things in the world for one beautiful and disconnecting brain.

Dad will die with dementia having likely never figured out two buttons, and then who knows what more—those two buttons becoming, now, metaphors for all the rest of it. All those new and near-future reminders hiding, right now, in the plain sight of a transient knowing. But when the time comes, whenever it comes, and it will come, and god-willing, when the knowings disintegrate with each failed synapse, we’ll be there, regardless, to serve as memory. Dad’s memory.

“I will push the buttons now Dad, please don’t worry.

“Just put your head back, and rest.”

Rest. go gently, but smile too please!

T plus 131 days… and counting. Two buttons. Just two buttons. That are always just out of reach even when they are right under your fingertips.

[A note on these posts—I’ll be paring back the publishing of these “bottled messages” from Dad’s Journey to once a week, with an occasional second post per week every now and then. The weekly post will be sent on Friday afternoons—any others, especially if there is something important to share about Dad (well, I think they’re all important), will be sent randomly. I want to prevent over-saturation for you all especially as we head into the busy holiday season. And, again, thank you all for your continued interest in being Eldered by a humble, retired farmer and remarkable human being…aka my Dad.]