Dementia’s Elderings
It sucks to come to know some of the deepest lessons from life come from the hardest and darkest of times. And yet…and yet.
And yet, that’s always been the case.
Still, it sucks.
This is another Dad post written when he was still alive but I hadn’t yet posted to the blog. I remember writing it during a time when he and I were really leaning into his life, a life that was succumbing more and more to the companion Dementia. Dad’s Dementia started to take on its own felt presence, a life all its own if you will—if he and I were alone together in a room, Dementia was there as well. Dementia could be felt, it had its own energy, and pace, and demands. We couldn’t leave it behind and go for a drive, it came with us always; and I packed a bag for it as well (to make it, us, more comfortable). We couldn’t say goodnight to it and tuck it into its own bed while we went to ours in different rooms, it came with us, and stayed awake (we learned Dementia never sleeps), ready to nudge us awake ourselves because of the demand it was placing on Dad’s body, most often his bladder and/or colon, sometimes his brain through his night terrors, which also meant it was then placing a demand on my body because Dad needed me for help. Dementia never went on a summer hiatus or vacation, it did not take a few days off for Christmas or New Years. It never provided us respite. As time went on, Dad’s Dementia grew, evolved, matured, and had the potential to overwhelm us both. But it didn’t. I wouldn’t let it. Which meant I had to befriend it and learn from it.
So this is what I wrote at that time. I had also written to Dad’s Dementia (found here), in a sense, to welcome it into our lives since we all knew it was staying for the rest of Dad’s life—an anti-love letter, if you will, that had a cathartic feeling to it that ultimately led to me learning some incredibly profound lessons’ from its teaching. What I was learning was too important to keep only to myself. Even as Dad grew more and more tired, and he cared not a blip about learning anything new about himself, especially if the teachings came from what he perceived was his enemy, I knew I needed to approach Dementia differently. I knew I had to.
It wasn’t ever going to leave…until Dad did.
“…if someone asks us to pinpoint the times in our lives that changed us for the better, a lot of those times would be [dark] wilderness times.”
~ Barbara Brown Taylor
I wrote recently of befriending Dementia. To learn what it had to teach. I wouldn’t want it as a friend for any other reason—it wouldn’t be welcomed here if it didn’t come with some redeeming value. Among the many, I can say in earnest one learned lesson is that we should not welcome anything in our lives that doesn’t bring meaning, that doesn’t add value to the miracle that is our presence on this earth, or that doesn’t cause us to learn and grow. This is provided you have the option to welcome the thing in. Some things don’t give you a choice. Some things, like Dementia, are never welcomed initially; when it arrives, it’s not going to “pass on by”without our invitation of welcome to stay. So another of the profound learned lessons is that you can welcome in darkness; and darkness, if met with solemn reverence, might bring the most unexpected meaning and value to our lives such that we will never be the same.
At THOSE times, the bleak and dark and scary times, the only life affirming choice, then, IS to welcome. And THAT will be the most difficult thing you will ever do. But do.
This takes vigilance and restraint—noise and drama are sometimes seductive courtiers. Our attention spans are vulnerable to bright, shiny, novel, sexy, and noisy things. Chronic and challenging illnesses, like Dementia, hardly get categorized as sexy.
Heck, THAT’s the furthest thing from MY mind when I’m in the bathroom with Dad…trust me! But my danger there is that those are times when my mind prefers to be anywhere OTHER than where my body is. And when that happens, no learning, no growth, and no compassion happens. Because I was not fully present. And yes, that happens, still. And too often.
Now, when it comes to this, this Eldering from a dark place, Dementia isn’t “doing” much—it’s just sitting there nestled apparently all too comfortably in the confines of my Dad’s brain taking its sustenance from the neurons within. So, when it comes to this kind of learning, I’m finding I’m doing all the work. Which is fine with me anyway—the learning I need is learning only I can discover and make sense of. Your learning would likely be different were you in a similar situation. But the teachings are there for the taking regardless; there for the both of us.
They are there for all of us.
An aside regarding teaching and learning: A Truism
Every teacher needs students, otherwise they are just lonely individuals talking out loud to an empty classroom of little chairs. But the learner has to bring to the relationship the most valuable component of the teacher/student dynamic: namely, the desire to learn. It was among the saddest things I ever witnessed in my life as a principal when I saw a young child with the mistaken belief that they could choose not to learn—that they were bold enough to make that decision for themselves without ever considering the consequences. These are among the hardest children to reach—give me an angry child any day over a child who has learned the helplessness and hopelessness of apathy. Setting aside the wonder of where they learned THAT, you’d want to believe this is a rare thing—but it happens way too often in classrooms everywhere. This is why master educators, those who know these children exist and yet NEVER give up on them, do life-saving, heroic work every day. And it’s also why they are grossly underpaid and undervalued. Master educators always find a way—even with the most apathetic of children. That, or they fail, but with broken hearts. Always.
Dementia’s teachings are there, just as are the teachings of every shadow in our lives. We simply either have to seek for them to find them, or upon their finding us, be present and receptive. And become its student.
Either way, in learning, we have to want to do so. When offered the teachings from Dad’s Dementia, apathy, our apathy, would have been caretaking malpractice, and that was never going to happen.
“Every difficulty you face belongs to your journey.”
~ Master Shi Heng Yi
As I have made myself available and receptive to Dementia’s Elderings, and setting aside the very practical things we’ve had to learn to make living simpler and easier (such as the routines of showering and bedtime, how to get up from a chair and how to sit, and how we’ll walk for exercise), here’s what has found me so far that has both humbled me and advanced me down the path of my own human journey:
Patience — Oh, if it weren’t for a cultivation of patience, I have no idea how our house would feel right now for any of its inhabitants. I have still so much room for more patience; and Dad and Dementia are providing so many opportunities for me to harvest. On this difficult road, is it a surprise to you to learn that it is those times when patience was lacking that become the most memorable? And regrettable? Do you identify with that? And here I try to not live with regret. So when I fail at patience, Dementia offers:
Compassion — compassion for Dad and for self. This teaching demands a pause and a breath. We can get so wrapped up in the challenge and difficulty and emotion of things that I forget the Eldering of compassion that is always “right there,” right in the middle of the messiness. True service to another is all about selfless and selfish (see the paradox there?) compassion—“to suffer with.” Selfishness in true service to another is an understanding of the vital necessity for self-compassion. THIS is another way to embody grace.
Roshi Dr. Joan Halifax says: “We live in a time when science is validating what humans have known throughout the ages: that compassion is not a luxury, it is a necessity for our well-being, resilience, and survival.” I’m getting plenty of practice, with Dad, working my compassion muscles. The deeper one can settle into compassion, the less likely one is to experience burnout. Burnout and compassion are incompatible with each other—this is an insight and clue for caregivers the world over. “Compassion-fatigue” is not a thing. But burnout, and empathic-distress is. To keep from burning out, grow compassion. If you feel you are getting tired or in danger of burnout, that is a sign your heart is not in a state of full compassion. Because, burnout carries with it a sense of helplessness—“I feel your pain so much that I, too, am getting hurt”; compassion is always service-oriented and outcome-based—“I feel the pain you are in and I’m here to help ease your way a little. Let’s try this.” Burnout depletes energy and causes harm; compassion restores and revitalizes energy, and brings about healing. This has been a vital insight for me. I still get tired, very tired at times. And frustrated. But then I’m quick to remember compassion’s role, and then I give my own self the grace of compassion too. And then, I begin again.
Selflessness — But selflessness should be called out more explicitly because a devotion to caretaking of this degree is a call to selflessness. Doing so relieves suffering to a large degree—perhaps for the one receiving the care, but more for the one giving it. This has been my experience anyway. Suffering needs a “self” to attach itself too—when I serve my Dad without any delusions that things are happening “to me,” I get to be more fully present in the moment WITH my Dad. At those times, I’ve discovered that “self” disappears to become “not you, not me, just us, just this.” This journey was never about me; and although I thought at first it was all about Dad, I’ve come to realize it’s more about relationship.
True service — “True” is the key word here. I liken the term to mean service that is rendered not for praise or acclaim, but out of a humble desire to make the journey of another less burdensome. It is said, especially in Eastern mystical teachings, that our true nature IS about service to others. One of my favorite quotes, that is a part of some of my signature lines, is from the author Peter Matthiessen: “The purpose of our lives is to help others through theirs.” Even scientists who study Darwinian evolution are discovering the phrase often attributed to the Law of Evolution is a misapplication of Darwin’s core tenets: “Survival of the Fittest” does NOT actually account for the success of most species—including humans. Rather, those who are most successful are the ones that cooperate with each other, and with neighboring species, to promote wellness and genetic propagation. Success is bred through humble service.
Loyalty — a reminder here that these are Elderings I’m learning from Dementia, whether or not Dad is explicitly involved. Loyalty may seem a little odd to be included here, so stay with me a bit. Of course I’m loyal to my father, that shouldn’t be in question. By listing loyalty here, I do mean I’m developing a loyalty to Dementia—an “allegiance” to its consistent presence so that I can count on it as my source of empathy and compassion for my Dad. Loyalty in this sense involves trust. Think of it like a batter in baseball: that player has no clue what the pitcher is going to deliver so she is at a disadvantage from the start. Imagine how the hitter’s chances improve if they knew what pitch was coming their way. Even though we might not know exactly the nature of its breaking balls, whether a curve or slider or knuckleball or change up is coming our way, we know those are the only pitches that Dementia is throwing us right now—so we are counting on this consistency in trusting that a fastball isn’t coming, and so we are able to adjust our stance for a better chance at a hit. We are becoming comfortable with the uncertainty, to trust in its odd nature, because that uncertainty is of the same relative speed, curvature, height and width. Its consistent breaking ball pitches are garnering our loyalty.
Dad isn’t Dementia, he HAS Dementia (maybe better to say Dementia has him). Every 2 a.m. nightmare, every trip to the toilet, every shower and shave, every coughing aspiration, every freeze and epileptic seizure, is happening now because Dad’s brain is on Dementia and those are the curveballs we are being thrown. None of it is a fault of Dad’s even when he calls for me at my worst of times or timing. He’d have it otherwise if he could. But he can’t. So we thank Dementia for that (otherwise we’d cry)—and then plan for it (adjusting our batter’s stance in the box). Like making sure we go to the bathroom before I start boiling the pasta water (which works, 80% of the time anyway, but I’ll take that). Our loyalty to Dementia’s curveballs reward us with a higher batting average—and we are therefore surprised less. In the world of Dementia, that’s a win. This ironic sense of loyalty leads to:
Acceptance — We can hate the diagnoses, we can wish everything were different. We still do both, btw. But staying in that dark space of longing invites suffering. Like BJ Miller said in his amazing TEDTalk a couple of posts ago “I can no more reject the fact I’m never going to get my limbs back than I could reject myself.” If you call to mind and bear witness to every human who has lived through all forms of trauma and whom came out the other end more complete, more whole, even healed (or on the road to healing), you’d find “acceptance” has been a huge part of their wellness journey. Acceptance doesn’t mean surrendering; one can still do everything possible, when it is possible, to stem the tide of pain and inevitability. But there is a lot of relief and empowerment that can come with the realization that everything that has happened to you prior to this moment has become a part of you and has been important to who you are now.
“Acceptance means to withdraw attachment and emotional energy related to occurrences inexorable, but it does not mean approving or liking them. It is not indifference.”
~ Craig Brestrup, “Reverence for Existence: A Way of Knowing.” Camino Bay Books, 2018. p. 197
Dad has Dementia and it cannot and will not be cured; via relationship, we have Dementia too, just differently from Dad. AND, this is who we are now. We cannot have it any other way. So we’ve made space for it. And because we have, we’ve developed a profound…
Understanding — Because we’ve befriended and made space for Dementia in our lives, this most achingly selfish of dark guests, we’ve also come to understand. Certainly, there are still moments, especially the new moments that bring with them new consequences of the ravaging disorder, where we slip into “not understanding,” as in “I just can’t understand why you didn’t go when you were just there Dad? Why do you need to go back when you were just in the bathroom two minutes ago?” Again, I have to believe he’d have it differently if he could. He’d want to be more independent even though his vulnerability is among his greatest gifts to me. So, we understand. We’ve learned a lot about his brand of Lewy body Dementia, and although we know there will be more to learn, we understand. We will understand everything. Even the things that make absolutely no sense and that will continue to confuse and even frustrate us.
And then, with the possible exception of the Eldering known as Love (the lessons of which I’m saving for a different time), we come to perhaps the penultimate Eldering gift:
Gratitude: David Whyte has written about gratitude:
Gratitude is the understanding that many millions of things come together and live together and mesh together and breathe together in order for us to take even one more breath of air, that the underlying gift of life and incarnation as a living, participating human being is a privilege, that we are miraculously part of something, rather than nothing. Even if that something is temporarily pain or despair, we inhabit a living world, with real faces, real voices, laughter, the colour blue, the green of the fields, the freshness of a cold wind, or the tawny hue of a winter landscape.
We sit at the table as part of every other person’s world while making our own world without will or effort; this is what is extraordinary and gifted, this is the essence of gratefulness, seeing to the heart of privilege. Thanksgiving happens when our sense of presence meets all other presences.
~ from “Consolations: The Solace, Nourishment, and Underlying Meaning of Everyday Words.” Many Rivers Press, 2015.
I am grateful that my father is with us now; and grateful for not only his Elderings along his journey, but, yes, even of those of Dementia. As it’s becoming heartbreakingly easier to distinguish between the two—the words and actions that remain my Dad’s vs. those having been run through the filter and ravages of Dementia—I’m coming to realize the privilege this is to walk alongside another person’s lonely road of dying. It’s an honor to be present so that my Dad isn’t yet alone—and it will be the greatest of all honors to hold his hand when he finally does step over a threshold I cannot cross with him, and then bear his witness while he goes off by himself. I know there is deep gratitude that will come in that most sacred of human moments. Because there is gratitude here, now.
Learning is worthless and a waste of time if what is being learned doesn’t, in some way, add value to our lives; if our lives are not changed. Each of the Elderings above continue their alchemy on me—and because this is in no small part a selfish endeavor, I’m becoming a different person. Different, at least, and maybe better, than I was yesterday. And still I have so far to go.
When it comes to Dementia as my Elder, I refuse to be apathetic. I won’t give Dementia the satisfaction of thinking it is getting away with anything, let alone robbing us of our Dad free of the price of rent or admission. Nope.
I am learning from Dementia. I’m working hard at discovering its lessons because I know its devastating and profane work, in addition to its destruction in my Dad’s brain, is also occurring in me—within my heart. With my permission, and my willingness to be its loyal and grateful, yet begrudging, student, I’m allowing Dementia to change me. It’s changing my Dad, so this is one meaningful way Dad and I can remain in fellowship, as father and son. Now, those two roles are more ambiguous between us—growing up with him, I NEVER gave my Dad direction. Now, he receives direction and explanation from me hourly and for the most part, he accepts my direction. I think THIS is what is meant to be when two souls remain open and vulnerable—and in close relationship with each other: the lines of difference and delineation blur so that it become indistinguishable of where one ends and the other begins.
At least for us, this is how we are making progress on Dad’s Journey Home. Dementia belongs to Dad’s journey, which is our journey. So Dementia belongs to us. And although if given the choice we wouldn’t have chosen THIS guest, Dementia has made such the difference in all of our lives.
I left “LOVE” off my list up there. Soon, I’ll tell you what I’m learning, from Dementia, about Love.
Or have I been doing that all along?
T plus ___ and counting.
Postscript written September 2023–six months after Dad’s death:
Dad had it wrong. And this was another learning of mine that came from my reflections and practices—Dementia was not an enemy. Thinking it so only added to the suffering. And lord knows we didn’t need more suffering. In this respect, no chronic, or even acute, illness (eg cancers, traumatic accidents, etc) need be our enemies—making them so causes the wound to fester and the hurt to hurt more. Thinking like this doesn’t mean with have to “like” it (we didn’t, ever); but for us it could not diminish the fact that Dementia was a part of our lives and there was nothing we were going to be able to do to change that. So, I might as well approach its presence with reverence, to learn what it had to teach.
I want to believe I have learned well.
When it comes time for my own death to accompany me as my escort away from this life, THAT is the time that will serve as my judge:
Was I a good student worthy of the lessons?
It seems we have made pain some kind of mistake, like having it is somehow wrong. Don’t let them fool you— pain is a part of things. But remember, dear Ellie, the compost down in the field: if the rank and dank and dark are handled well, not merely discarded, but turned and known and honored, they one day come to beds of rich earth home even to the most delicate rose. ~ Teddy Macker “A Poem For My Daughter”
For the record, if you are interested, here’s the post written exactly one year ago tomorrow (Sept. 30, 2022). It was the second “most popular” post of all my blog posts.
