Dying Wiser # 14: Befriending Dementia

Wisdom Through Literature; Eldering Through Dad

It’s the last post of the month; time for another Dad post. The following was written some time in early February, 2023. We revisit John O’Donohue again; back in February, I didn’t realize how much space I’d devote to O‘Donohue. I guess when someone means as much to you, whether that be a dad or a poet, well, ya just gotta keep going with it. This post is presented in its original form based upon how all things were at the time. Dad died March 15, 2023; from Dementia-related causes.

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I’ve been trying something new! Trying to make a new friend.

“Ah ha” moments come when you least expect them—otherwise I guess they’d be called “well, duh” moments. Their unexpectedness gives them their iconic “awe” factor. The other day, compliments of John O’Donohue, I had an epiphany—and I think it’s working. It’s worth a shot anyway; what we’ve been doing hasn’t been giving us much inspiration even though we are getting by by living each moment as it comes, and as well as we can. A new way of looking at things is now in order.

Epiphany (noun)

a: (1): a usually sudden manifestation or perception of the essential nature or meaning of something

(2): an intuitive grasp of reality through something (such as an event) usually simple and striking

(3): an illuminating discovery, realization, or disclosure

b: a revealing scene or moment

(Merriam-Webster, 2023)

“An intuitive grasp of reality through something simple and striking [like reading a paragraph from an amazing book by one of your amazing Irish philosopher/poet teachers]; an illuminating… realization….”

Epiphany = Ah ha!!!

Yep, I had an epiphany the other day.

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We’re the lucky ones?

For whatever reason, Dementia chose dad, and by closeness of familial proximity and blood, Dementia chose us too— although right now at least, it visits us differently than it does my father. In a poignant section on prayer from his book “Eternal Echoes,” John O’Donohue writes:

It is often at the extremes that the eternal comes alive. When we are safely cushioned in our daily routine of duties and expectations, we forget who we are, and why it is that we are here. When suffering chooses you, the fabric of self-protection tears. The old familiarities and securities fall away as if they had never been there. The raft of desires that guided daily life become utterly insignificant. Suddenly they seem like fantasies from another era. Every ounce of energy gathers into one intention: the desire to survive. In some subtle, animal sense, we always secretly know how precarious and vulnerable our presence here is. Suffering absolutely unveils this fragility. E.M. Cioran writes: “Without God, all is night, with him light is useless.” (p. 188)

Such suffering radically refines the way you belong in your life. The true essence of your life becomes present to you. (p. 189)

(Eternal Echoes: Celtic Reflections on Our Yearning to Belong. Perennial: HarperCollins, 1999.)

With Dementia as a full presence now, and growing more prominent as a presence seemingly with each passing day and with each neuron’s disconnection in Dad’s lovely brain, it is true there has occurred a not-so-subtle tearing of the “fabric of self-protection,” the fabric of our lives as the predictable, comfortable, and stable ones we falsely came to expect. Dementia is teaching us life doesn’t work “that way.” The life that we want is at odds with the life that has chosen us. We fight that truism at our peril; for, in the end, life can’t win because death cannot lose.

Fighting and resisting Dementia is both a battle and a war we won’t win. So…we surrender. It’s not easy to surrender; but oftentimes it takes more courage to do that than to keep on fighting a conflict that will only end when death arrives. But we surrender in a different way than what is often visualized at the end of, say, war films. In doing so, in surrendering anew, Dad’s “true life essence can become present to us” perhaps in lovely and unexpected ways.

Not to get overly dramatic at this moment, but the words of Chief Joseph (he of the noble Nez Perce tribe of Northwest Native, First Nations peoples, upon the moment of his surrender in October of 1877 to Gen. Oliver Howard in Montana, after 1000 miles of self-enforced exile, retreat, and engagement with federal, post Civil War, calvary across the northwestern states), resonated within my heart:

Hear me, my chiefs. I am tired. My heart is sick and sad. From where the sun now stands, I will fight no more, forever.

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Dad is tired. His heart is sick and he is sad. From where he now lives….

We’re not surrendering to Dementia in the normal definition of the word. We are still living, and providing, the highest quality of life and safety for Dad—“we,” meaning his entire family. Instead, we are no longer fighting it, forever. And like I said, I for one am trying something different. Now, when I say Dementia has visited us, I mean to include as well Kristin and Sammy, Trevor and Kendra, and Clary and Gloria—and ALL of Dad’s family and friends. And if you’ve been on this narrative Journey for a while now, by proxy, Dementia is visiting you too. As a teaching, with Dementia as our teacher, it is allowing a “radical refinement of the way we belong in our lives” [another paraphrase of O’Donohue].

No, we’re not surrendering in its traditional manner; but Dad IS tired and has said often that he feels like he’s “ready” but wonders at his God why the hell (my term!) “the Lord isn’t taking me.” Even though it would catch him off guard for its immediacy (because inevitably when it happens, it will seem too immediate), and he’d still be nervous if not afraid at what would be next, if God WERE to visit and say: “Okay Wally, I’ve prepared your spot in Heaven now. I invite you to come on up. Here, grab my hand,” I think Dad would RSVP his acceptance and take hold the hand. But Dad would need an assurance first, which we have given him over and over yet again, that WE will be okay after he makes that final Journey, and that WE would give our own blessings that he accept that golden ticket of an invitation. Only after that, I believe, would he let go…and then reach out finally to grasp the sacred hand of God.

But it feels like, even though that day is getting closer, it’s still a ways off. So until then, we have this visitor among us. A visitor that makes itself known every hour of the day and night. And we are getting tired of resisting and fighting against this visitor. So, my epiphany was that it is time to change tack.

It’s time to discover why Dementia chose to grace us with its awful, and awesome, presence. It is obvious it has something to share with us.

It’s time to befriend Dementia.

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What you talkin’ ‘bout Willis???

When we learn to see our illness as a companion or friend, it really does change the way the illness is present. The illness changes from a horrible intruder to a companion who has something to teach us. When we see what we have to learn from an illness, then often the illness can gather itself and begin to depart. (p. 174)

There is perhaps a moment in every life that something dark comes along. If we are not very careful to recognize its life-damaging potential before it grips us, it can hold us for the rest of our lives. [Wounds and illnesses] are not sent to make us small and frightened; they are sent to open us up and to help graciousness, compassion, and beauty to root in us. Wounds offer us unique gifts, but they demand a severe apprenticeship before the door of blessing opens. (p. 176)

(John O’Donohue writing in “Eternal Echoes.”)

Dementia is a horrible complex of what doctors refer to as “co-morbidities.” And O’Donohue is so right, Dementia is a severe and demanding presence. Patients with dementia exhibit wide-ranges of disorders, disability, and illness—all as has been shared in past posts. There are no “cookie-cutter” patients with Dementia; though many individuals can look similar in how Dementia manifests in their bodies and minds, each is as unique as the person her/himself is unique. Just like we in the education biz used to say in regards to children who were diagnosed with autism: “If you’ve seen one person with autism, then you’ve seen just one person with autism.” The exact same thing should be said about those with Dementia. There is one thing, for certain, all have in common though: people who have been diagnosed with Dementia will die with Dementia. There is no cure. Dementia never leaves.

So we can fight it as much as we want; the outcome won’t change. As much as Dementia has worked its malevolent magic on my Dad’s brain, he still holds out hope that some cure might come. This was his hope when we transferred his medical care to a physician on this side of the mountains. But it’s not gonna come. And yes, there is a form of grief that is accompanying my Dad now on his journey—the grief of lost abilities as he still retains memory of who he once was.

But given all that, all that heavy understanding and knowledge of what Dementia is, there IS a different way of being that might offer a different kind of ending. Maybe for Dad, sure. Certainly for us. Certainly for me at the very least. But it demands we have a different relationship with Dementia: no longer one of competitor, antagonist, or victimhood; but one of apprenticeship and friendship.

My epiphany.

“Your days and ways are never simply as they appear on the surface. Human vision is always limited and selective, and you never see the whole picture. The Providence that weaves your days sees the greater horizon and knows what your life needs in order for you to come fully to birth as the person you are called to be. [Suffering…this Dementia] refines you, so that you may become worthy of your possibility and destiny. The irony of being here is that sometimes it is precisely what you want to avoid that brings you further towards creativity and compassion. The intensity of rejection, [of the pain and grief of Dementia’s presence], is the index of need.”

~ John O’Donohue

Befriending Dementia, befriending anything that enters our life and brings with it sorrow, pain, suffering, loss, and grief, doesn’t mean that doing so will make it all go away. No, much of that will be impossible especially if we are talking about chronic illness, trauma, or severe debilitation. Dementia has no cure. Dad will die of dementia-related illnesses. But maybe by befriending Dementia, as it speaks to us in its own language of “hidden silences,” and by doing what we are already doing to compassionately serve my father through the living of his dying, allowing him to die wiser, we can bring about healing. A wise doctor/mentor of mine says: “It takes an expert to cure; but it takes a fellow human being to heal.” Sure, there is no cure within the ravaged realms of Dementia, but there is space and opportunity for a whole lot of healing. And companionship.

Healing is a relationship. Healing doesn’t have to bring about cure; in fact, healing often leads to scars—those pesky badges of courage from past hurts. As I have come to understand it, on the other end of the suffering (or trauma, or pain, or diagnoses, etc.), if you can realize that there has been a surfacing of learning, and growth, and understanding, and compassion, and love, then you can be assured that healing has also been present. And healing only comes about when there has been a befriending of the hurt, pain, sorrow, and grief.

In a sense, we are offering healing to Dad right now. He doesn’t necessarily know it as such; and we don’t talk about it in these terms, but healing is being offered. And Dad is accepting; I do think healing is occurring. The multiple relationships that exist now in our home, which includes our varied relationships to Dementia, is bringing about a different ending to Dad’s life story. An ending more full of care, compassion, companionship, and love. Not to mention more vegan blueberry wholewheat muffins and oatmilk lattes (I digress). Before he moved in with us, despite the best efforts and intentions of the staff at the assisted living facility he was in in Yakima, his narrative was heading in a very different direction. But that has change; together, we are rewriting his ending.

An ending that now includes grace and healing as we begrudgingly befriend Dementia.

Grace and healing for Dad…and for us too.

“Your body is your only home in the universe. When you become ill or injured, you have to become used to your body as a new dwelling. All of a sudden, it is strange and vulnerable…. Up to now it worked with you and for you; now it hesitates, it must be encouraged, and often just squats there unable to move or partake. There is a desperate poignancy in the presence of a sick body. A friend of mine who now has the companionship of illness and cannot be left alone says, “I have had to get used to living with this third thing that is always there now between me and everything.” ~ John O’Donohue (“Eternal Echoes,” p. 176-7)

Dad hasn’t gotten used to living with Dementia—his “third thing.” He is still astonished at every turn of his now inseparable companion’s wicked pranks upon his brain. But it’s time I do. Which is why this isn’t about Dad befriending Dementia, ‘cuz he’s not. He wouldn’t know how, nor do I think he would want to. This is about the rest of us being given the opportunity to do so—and as an Eldering lesson for all who follow us. Or at least to see how it might work to do so.

Ultimately however, this is about me humbly accepting now a new friendship I never sought, and would give anything to not have.

But we are here now. I am here now.

Dementia is here now.

Dear Dementia,

Because we welcomed Dad into our home in July of 2022, and knew you had taken up residence in my Dad, we knew we were welcoming you too. So, welcome. At the time we didn’t know the kind of guest you would be. We know a little more now, but you still surprise. I think that is one of your intentions.

This is not a love letter, please don’t make the wrong assumption here. But this is meant to be an offering of friendship. We tried to hold you back, deny your presence, ignore your harsh consequences, doctor you away with tests and prescriptions, and forget you were here. But you’ve never left. Now, we can never forget you are here; you won’t let us. You make yourself known even when you and Dad should be sleeping. The fact is, you were never going to leave—so perhaps I should have offered this to you sooner. Maybe doing so would have saved some heartbreak; but it’s quite likely not much. You likely know that your presence in a life, and in the lives who care for and love that life, comes with heartbreak. And grief too. Both dark emotions. I never thought to ask you before now how you feel about that. I imagine that might be a sad way to be in the world—that no matter where you go, you know you bring with you, sorrow. I wish I could say “I’m sorry.” The best I can say right now is that, at least, “I understand.” More now than I did back in July of 2022.

Because you aren’t leaving any time soon, and irony of ironies, we don’t want you to leave anytime soon, because we know what it will mean when you finally do leave, we offer you space and sanctuary here too—just as we do with Dad. In doing so, and as with any being no matter from where they come, I know there is something to be learned from you. And it is because of that, solely because of that, that I welcome you here.

There is some reason you chose my Dad to visit, and I may never really know that reason. By visiting Dad, there is likely also a reason why you chose to visit us through our Dad, and now it’s our task to figure that out. Maybe I won’t discover the reason until later. Maybe only until after you finally take Dad from us. Maybe it’ll take years after. I’ll be patient. There IS a reason you are here. I know this in my soul—where all such heavy things seem best to live and where they are always welcomed and blessed.

I don’t know how close we will grow together; you are quite hard to like. So our relationship may (will) never get to the point of really liking each other; and please forget any notion of love. But, we can get to acceptance. I truly believe that. I have to believe that. And as long as we have the courage, as hard as it always is, you might, as well, if you continue to use your manners, be granted our forgiveness. By entering Dad, you had no idea what that would mean, to him or to us. And every day brings something new; maybe you know what you are doing in there, and maybe you don’t. Regardless, we still have our kind and humble Dad; so at least, maybe by your grace, you are allowing that part of him to continue. And if that is the case, I can then also say “thank you.”

Now, don’t be offended. Once you leave, with Dad, please, don’t come back. You may not be welcomed then. So don’t get too comfortable now even though you still have teaching and Eldering to do—for our benefit. Let us learn what you have to offer; may we apply that learning to make the lives of others, and this world, just a little lighter and brighter; and may our hearts grow in compassion for all the others you have visited, and will still. Perhaps as we grow intimate in our relationship with you, maybe those lives will experience some measure of healing and comfort for us having known you.

Some strong feeling inside me is telling me THIS is exactly why you have chosen to be a part of our family. If that is the case, you have chosen well.

We have a lot of love to share with others. And so we will.

Your new friend,

Kert

PS: I cannot speak for the rest of my family such a close and personal form of sacred generosity; the things mentioned here are incredibly difficult and hard and emotional. We love our Dad to infinity and beyond. And you are taking him from us. So, it is not my place to offer something from them, my family, that I have no right to give. I leave it up to each of the rest of the members of Dad’s family and friends, if they can see the tremendous act of self-compassion that it is, to befriend you like I am befriending you. No matter their decision, please don’t hold it against them; I trust you will respect their wishes as you are such a hard acquaintance to hold close. We are all doing the best we can right now. If you need to come back to us, if you must come back, once you have finally taken Dad forever, please come back to me. At least I know how to welcome you and Dad is teaching me how to die with you; I won’t forget the lessons, but you will have to promise you will visit no other member of my family. You always bring sorrow after all. Isn’t there enough sorrow in our world just now?

But know this also: years from now, when we open the loving vaults of memory and think about Dad, we shall think mostly of the memories when you weren’t a part of his life. And we will always smile. We may choose to befriend you now, but we don’t have to like or remember you.

I trust you won’t take offense, but only understand.

T plus ___ days… and counting. I have a new friend to whom I am offering my broken-opened heart. One can never have enough friends when said friends offer such gifts as these: grace, depth, compassion, grief, and the true meaning of love.

May you as well have the courage, and be blessed, to make such friends as these in your life; from the things that arrive without invitation. The most profound learning can be found among them.