Affirmations and Confirmations!
And allowing a man to be a 70%-er at home to create the art that is his life now.
Exactly one year ago, Kristin and I, while sitting on our upstairs couch on a quiet winter Sunday morning, made the decision that I would terminate my career as a principal in order to move Dad into our home for full-time care. On Feb. 12, 2022 (last year’s Super Bowl Sunday!), we—Trevor, Clary, and I—held a zoom family meeting with Dad where we shared with him our thinking and to see if he would be interested. As if we didn’t know what his answer was going to be! Over the course of that time since our decision (that I chronicled somewhat before this Substack was created), we’ve made a lot more decisions; overcome more than a few obstacles; made our share of mistakes, corrected them, and then made more; and have never wavered in our conviction that this was the right thing to do for Dad. We really don’t need affirmations when everything we are doing looks right, feels right, sounds right, is right. Even when we, no, I stumble and make mistakes because the journey is so difficult.
Still…
We are certain we’re right in doing this even as this is difficult and emotional and challenging—what we are doing here in service to a dying Dad. Every day is confirmation of that. And, I would not want to do anything else in the world right now.
[an aside re: difficulty. As is the case with most things that are difficult, they tend to be at their most difficult when they are a new experience for us. And as is the case with most of the difficulties that we live with, provided they are of the kind we are acquainted with and can count on, then, well, they evolve to be not so difficult. They evolve to be…”just this now.“ THAT is kind of where we are with most things Dad—at least with the things we can count on.
Besides, one can only know difficulty if its opposite exists too—and we have an abundance of that in our lives as well.]
Ars moriendi ars vivendi est
Consider…
If you have bought into one of my main premises for writing these posts about Dad—that through him, from his life prior all the way through his current lived example and well into dementia and old age, that he can be a valuable Elder in our collective lives for how to “do this” well; how to age, Elder, and even die better, than this is one post that is worth seriously considering deeply. For any Eldering we get is absolutely worthless if it doesn’t effect how we go about our own living.
Because I think (at least I want to believe) my heart and soul is in the right place with how we are caring for Dad, as I explore the world of knowledge, wisdom, and research into topics like elderhood and sagehood, aging, dying, dementia, hospice, caregiving, and palliative care, I’m finding more and more things show up of their own accord (they just appear without me searching for them!) and tempt me to engage (by reading, viewing, listening, talking, writing…through a “relationship with” of some sort.) This is called synchronicity. When you resonate at specific life frequencies, you attract more of the same—and provided you are wholehearted and have benevolent intentions, you’ll get the same positive resonance in return (internet algorithms notwithstanding). But you only benefit when you recognize this has happened, and then do something about it.
Such was the case with me a few weeks ago…yet again. And it came to me via a YouTube TEDTalk.
Dr. Ken Hillman is a world leader in managing the care of very sick people. His breakthrough methods of treating critically ill patients have become the gold standard in Australia, the U.S., and Europe. His job as an intensive care physician is about keeping people alive, but he asks us to question whether that’s always a good thing.
When it comes to what Dr. Hillman calls “the frail elderly,” those who are becoming critically ill with the condition called “old age,” the old ways should become the new ways again because the now ways might be, rather are, doing more harm than good despite the good intentions that might be present from family, caregivers, and physicians. This talk deeply resonated with me—it is timely, articulate, clear eyed, wise, full-hearted, compassionate, and right.
In service to resolving the quandary he establishes as the title of his TEDTalk: “We’re Doing Dying All Wrong,” Dr. Hillman asks that we simply “get real” with our loved ones. Because once we do, and feel the difference that that makes, we’ll NEVER regret the necessary decisions that need to be made, nor their outcomes; because, like it or not, we will be confronted with often brutal “choice points” along our own various and individual “journeys home.” And we should know in advance how we’ll answer them.
Dad moves in and out of his understanding that he is dying—that everything that is happening to him is a part of his body’s process of letting go.
Dementia? A part of dying.
Incontinence? A part of dying.
Chronic heart failure? A part of dying.
Loss of strength, endurance, and coordination? A part of dying.
Fading eyesight and hearing? A part of dying.
Increased drooling and swallowing issues? A part of dying.
Seizures and catatonic freezing episodes? A part of dying.
Living???
A part of dying.
There are still times when he’ll say “I just can’t believe I’m here right now doing this. I never would have thought this is how I would be.” He says this when things are really difficult: maybe after an intense catatonic freezing episode; or when his body is too stiff to stand; or when he loses his balance and coordination; or when he is incontinent. And there are still times when he questions his God about why “He” hasn’t taken him to heaven yet; and when he’ll say “I can’t do this much longer. I think this is it. Why doesn’t the Lord take me?”
Maybe that’s exactly what his Lord IS doing right now. It’s just not happening on Dad’s time table and in the way he wanted.
In his attempt to reframe the prevailing “dying” paradigm, Dr. Hillman shares this (the following diagram) as a new model for how to support a loved one’s living through their dying. The emphasis, as he explains in his talk, is not on the diagnosis or treatment of the ailments at the core of the patient’s distress, but rather on the patient themselves AND the caregivers in community (that’s the key point: community!) with a wider network of support, care, wisdom, and love. The old ways of dying used to be done “in community.” The new ways are typically done in sterile, semi-isolation (like our own mom’s death) in the hospital with an intense focus on curing the prevailing ailment(s). Dr. Hillman says over 70% of elderly individuals, if given the choice, would want to die at home. My Dad is one of those 70%-ers. Yet, over 70% of elderly people actually die in hospitals or other acute treatment centers. This, as Dr. Hillman highlights, illuminates a fundamental disconnection.
Ask yourself “why?”
I think the disconnection has a lot to do with fear, uncertainty, priorities (which are always choices), and an evolved, society-wide and sustained unhealthy perspective about dying and death. Ultimately, I think it is about will. In our family, we’ve confronted that will. We’ve taken it on—fully head on. Kristin, Sammy, and I are just one small component of the Lenseigne family system that is supporting the effort to support Dad through his dying and to give him HIS wish that he die peacefully, calmly, pain-free…and at home; with family near, not the strange but well-meaning health care professionals as the only ones present. Trevor and Kendra, and Clary and Gloria, and Pat, and Dad’s entire family both close and extended (and even YOU as you read and are getting to know my Dad), are supporting this profound effort. We, all, are Dad’s community. And it is here, in this community, where his dying is taking place. Not behind the facade of a false-sterile hospital door, but here, right where it should be. Our aim is to keep it that way.
Just one day closer:
So how close is Dad’s end? We have no idea yet. And I’m not a believer in asking doctors “how much time is left?”; so that question will never be asked. But we know it’s closer than it was yesterday, by at least one day (just like yours!). Dad’s death is not imminent, at least we don’t think—this is no excuse, though, to stop talking about things like this. Talking about them, talking about death, doesn’t speed up the demise; sure, it may, and does at times, surface sadness, but it also brings about clarity and comfort in the knowing. And confidence in that we’ll know what to do when “the time” comes. With Dad, we’ve made important decisions already that involve his advanced directives. We know who we’ll be calling immediately and who will be engaged to help the family through to the very end. And we know Dad’s final resting place…because HE chose that. Dad made sure to remind both Trevor and I that he wants to be cremated with his cremains placed in the same urn that holds mom’s cremains—and then placed back in the family plot in Moxee’s Holy Rosary Cemetary. And so it shall be.
But right now, we are celebrating the moments: Dad is still alive—and we are making the absolute MOST of every moment, as we and he are able, to insure those moments are of the highest quality. Dad still eats, he still gets amused at some of my jokes and he’ll still try to joke back (we’ll always laugh!), he still loves, he still relishes and basks in the glow of having family near, and he can still engage (though this is diminishing as we are witnessing his own advancing journey inward). We are aiming to prolong his life, not his dying (there IS a difference!). And I think we are succeeding—most times anyway.
Dad is one of our Elders, and he’s Eldering us with honesty. There will come a time, perhaps soon, perhaps not, where our efforts move from prolonging his life, to delaying his death—and THAT will be the liminal time of knowing and reckoning for us. Because we’ve done the hard work of talking and planning, we think we know what we’ll do. But we aren’t there yet. And when we are, who’s really to know—until those moments are actually upon us (a foreshadowing of next week’s post!).
When Dad and I met Trevor and Clary at the Pass before the new year, so that Dad could spend a mini-vacay away from me 😜, the first sentence he said to Trevor when Trevor opened the door to greet him was “I’m not like I was the last time you saw me. I’m a lot worse Trevor.” (Notice Dad’s use of the judgmental term “worse.”) Dr. Hillman and his team in Sydney developed this scale which is helpful in categorizing where an elderly person is along their journey home.
Dad is clearly at a level 7 right now. He’s advanced rapidly through stages 4, 5, and 6. When he joined us back in July 2022, he might have been at a late stage 5 to early stage 6. The wheelchair that was gathering dust in the garage is now being used full time to move him about the house. And even he recognizes his advancing frailty. A couple weeks ago, we entered another phase that was stark and surprising; it was as if another whole area of Dad’s brain was instantly deactivated (eerily stroke-like but Dad hasn’t had a stroke—at least of the “typical” kind): since that time a couple weeks ago, and I can name the exact day (more accurately the exact night when it was clear we were in new territory: the late p.m. of Jan. 19 and early a.m. of Jan. 20), Dad’s been living more and more of his time in a reality solely of his dementia’s making; populated by its own cast of characters with its own timeline, problems, and meaning. He’s disengaging from our world without his knowing.
The other evening he had a dream so vivid about Trevor; that Trevor was here, outside, knocking on the windows to get Dad’s attention in order to come into the house. I could hear Dad’s side of their conversation through the monitors. Upon waking, Dad was so rattled and confused that he talked with me about it asking me why we didn’t let Trevor come in—because apparently in Dad’s new universe, Trevor promised he was coming over right after his meetings (remember, this was at about 3 a.m. in the morning and Trevor lives 3 hours away. If Trevor has meetings in the middle of the night, and wants to swing over for a quick visit, well, he should call ahead of time; we’d “keep the light on for him!”). Dad doubted ME that it was a dream, so vivid it was for him, so he hung on to the memory of that dream for two days until he had a chance to talk with Trevor on the phone and ask him if he was here knocking on our windows.
“You weren’t? Oh. I guess Kert was right then. It must have been a dream. Huh.”
I never say “I told you so.”
Stage eight might be close; one doesn’t go backward on this scale.
Because of this, we have moved his medical care from his doctor in Yakima to a renowned geriatric care facility and physician in Kirkland—where they also have a world-class hospice program (and when this is established, we will have successfully met all 8 criterion in Dr. Hillman’s “Long Term Solutions” model—although there is still more work to do in some areas). They will support our efforts as Dad advances through stages 8 and 9 on the Clinical Frailty scale. And then into the final stage that does not have a numerical designation on this chart. These new health professionals will become a part of Dad’s near community so that all of Dad’s wishes will be honored—that he be cared for with love and without suffering, at home…for as long as we all are able. With support from the community, we’ll take him all the way to his journey’s completion. And so we’ve even begun the preplanning with a lovely local organization; the people of whom will guide us through that threshold, while Dad walks alone through his.
Dad was incorrect in saying what he said to Trevor at the pass back in December. He’s not “worse.” He just is; just this—stage 7 if you are so inclined to use a helpful scale; or just here, now, and who and how he happens to BE, if you’re not inclined.
In other words, he’s still Dad. Just…different.
“So this is one of the most important decisions in your life. You need to take control over your own end of life.” ~ Dr. Ken Hillman
I include below Dr. Hillman’s TEDTalk—I hope you consider taking about 20 minutes to watch. If you don’t have an elderly person in your life right now that you can attach this wisdom to, then, please, feel free to use my Dad as your context, and imagine that what you will be hearing is happening right now to a proud and retiring and dying farmer… and his entire family. But also remember, if you don’t currently have an elderly person in your life, or someone who is actively, or near-actively dying, soon YOU will be that person. And the choices you can make, right now, will make a GREAT difference for you and your loved ones later. That is Dad “Eldering” at you!
Dying can be done wiser. So much wiser. Not easier (maybe more challenging if anything); not with less heartache and grief (maybe more so for the intimacy of it all); not hidden away behind a sterile hospital door with way too many tubes and wires hooked up (just fresh air, and light, and warmth, and music, and joy, and celebration…and love). All happening right here, right now, this close, with loving touch and stillness and soul present; no, not easier, just wiser.
And I call that better.
Those who will come after you need you to Elder—may you, may we all, do so with benevolent wisdom, compassion, equanimity, and joy.
If not now, it will soon be…your turn. Create the art that is your living and Elder that to all beings. What a noble thing, that.
T plus 215 days…and counting. These are amazing times with Dad. And we would not trade them for anything despite the challenges. But it is in those challenges, and through them, that we get to realize the full depth of our care, our imperfection, and our humanity. And in doing so, there will never be any regrets. NEVER live with regret. Instead, only admiration for the art that it is.
Thanks as always for joining us along Dad’s Journey Home. Your presence here matters.
Very interesting and enlightening post.