To Be Known

In my experience, people with dementia will continue to express/exert their personhood all the way through the course of their lives. Innately, all of us do, but it seems there is a purity and authenticity to this expression that develops as cognition declines.

Pillars of personhood, the unique characteristics and gifts of the self, will continue to be present, and care partners can build a relationship around these elements. But it requires that we hone our listening and perception skills, get rid of pre-judgements and limiting expectations, be intentional about meeting them in their reality and affirming/validating them there.

We must train ourselves to look for any expression of personhood, to believe that we can find it, and when we see it, to affirm it immediately. In this way, we can show them that they are remembered, loved and appreciated precisely for being who they are. When we behold something so sacred as the self, we should honor it, and be grateful to have seen it.

As their condition advances, personhood may only manifest as a sense of presence or a spiritual identity that we are able to perceive in quietness, through touch, or by the comfort we can share through a song, through movement, or through being with others who know and love them (personhood is intrinsically relational). In this way, their innate personhood is honored, and they are never seen as “less than.” In fact, they are known, and to be known is always to be “more than…”more than a label that bears the name of a disease or disability. I don’t think we ever lose the desire, the need to be known.

What a privilege can be ours: to demonstrate to others, through our empathy, compassion, validation, intentionality and care, that they are known.

(Watercolor art by Lester E. Potts, Jr., an artist who had Alzheimer’s disease)

Lester Potts 32


So, What is Lester’s Legacy?

Recently I’ve been reflecting on the essential lessons contained within my father’s story of artistic creativity in the throes of Alzheimer’s. Though the story teaches much in the realm of dementia care, it shares larger life truths, as well:

–Beauty and truth in you begets beauty and truth in me, and vice versa.
–Authenticity is more beautiful than perfection (a late and hard-earned lesson for me).
–Believing in one another helps (enables) us to become our true (best) selves.
–We become our true and authentic selves in relationship with other true and authentic selves, and the product of such relationships paints the world in beautiful colors.
–When, with fearless compassion, we touch our own wounds and the wounds of others, transformation will occur.

In his book, The Road to Character, David Brooks speaks about resume virtues (those qualities we put forth to achieve outward success), and eulogy virtues (those qualities that emanate from the core of our being, like honesty, kindness, and integrity), the latter often developing through hardship. I don’t know about you, but in the past, I’ve spent too much time cultivating resume virtues at the expense of eulogy virtues. With God’s help, that pattern has changed.

Lester’s story of beauty, courage and triumph of spirit through suffering leaves us many gifts. But the greatest for me, and one that I’m enabled and called to share with others, is this: Lester – his life, art and story – has unlocked my inner artist, my True Self, the part from which emit any eulogy virtues I may have (though, in honesty and humility, at times I’ve done a poor job of showing them).

That’s what the world needs from all of us, our greatest gift. True colors. Authentic selves. Our very souls.

Collectively, humanity can’t afford to lose one single hue from God’s color palette.

So, what is Lester’s Legacy?

Me. You. And the art of our broken but beautiful lives well-lived and shared.

Thank you, Papa, for having the undaunted courage to sing your soul song, and for helping me find the courage to sing my own.



Looking for Home

Yesterday in Bringing Art to Life, a person with Alzheimer’s, appearing somewhat anxious as one looking for home, spontaneously took my face in her hands and, looking me in the eyes with intention and sincerity, said words to me that I couldn’t interpret phonetically, but that I understood completely spiritually. As she did this, her countenance changed, becoming deeply expressive of tenderness, serenity and compassion.

This experience had a profound effect on me, emphasizing a key concept of care giving: care giving is also care receiving.

Reflecting back, I, the one without dementia, was the one looking for home, and found it in her eyes.

Not Forgotten

Not far from here, on a hill overlooking the Black Warrior River is the site of the old Bryce Hospital cemetery, dating from the mid-1800s. Having driven by many times, I’ve wanted to stop and explore the area, and finally one day, I did. The cemetery is the final resting place for hundreds of former patients of the mental hospital from the days when its census was highest, before the turn of the 20th century. There are a few visible headstones on the hilltop in the clearing of the main graveyard. Always one to wander off the beaten path, I was surprised to see the wooded regions of the hillside literally studded with gravestones like the one shown. Most of them have numbers inscribed, some have dates, and some have “woman” or “man.” Only a few have visible names.

Pausing for reflection, I felt a sadness there, among the markers to all these forgotten lives. “Woman.” “Man.” “2262.” Who were these people? What were their stories, there loves, hardships and triumphs? Had they walked beneath the ancient trees still standing on mounds of gnarled roots on the hospital lawn? Had they been treated with compassion at the facility? Did they have family members still living somewhere, unaware of their relative’s gravesite on a wooded riverbank? Had anyone ever come to pay their last respects? Had any remembered something special about these folk, a unique talent or gift, perhaps a playful grin, or the way they always greeted the staff or other patients in now-abandoned halls? Had their lives been a thread in the fabric of another person’s story?

In gratitude, I then considered the precious opportunities I’ve been given to form relationships, and to be impacted by the lives of others – lives and stories that become interwoven with my own. Narratives that, in some way, are retold many times-over in the course of a lifetime on each occasion they are recalled, and as that recollection moves me to gratitude, service, tears, joy, or just plain silence when the thought of them lights the horizon. What a blessing, I thought, to be cherished, to be appreciated, to be remembered, to have a story that is a part of the permanent weave in the fabric of other lives. I suppose then, in some ways, those unidentified lives from another time became a part of my storyline that day. Perhaps I can somehow honor them by remembering others; by making an effort to cherish the lives and stories I am touched by every single day.


Let’s Go Fishin’

“No day shall erase you from the memory of time.”– Virgil

“Wanna catch some fish, boys? Then get your poles and let’s go.”

They weren’t really my family, by blood. But I knew them as Father, Mother, and Brothers near enough to be kin. I practically grew up at their house; in their yard. Then they moved away and I visited in the summers. The memory that now comes swimming up from the depths is of an event that occurred one muggy afternoon about forty years ago, when Big Bro’ took us fishing.

The eldest of four boys, he was of a different family. His mother had died of the same heart condition he, himself would inherit, and his young father remarried. Perhaps that’s why he did what he did that day. Maybe he had inherited a double portion of motherly love.

We grabbed baby brother, about three years old, and dove into the pick-up with all our gear. We were going catfishing; so, of course, the gear included treble hooks and Catfish Charlie. The latter substance, a killer whisker-face attracter, had an aroma that would have stopped the Mongol hordes in their tracks, and sent old Genghis Khan galloping back to Uzbekistan. A blood bait with the consistency of crusty play dough, Catfish Charlie caked on a treble hook with a sprinkle of oatmeal to give it some body was like a trash pile in a Campbell’s Soup can for a hungry bottom-dweller.

Turning off into a cow pasture through an old barbed-wire (pronounced, “bob-wahr”) gap, we trucked out through head-high Johnson grass and a horsefly drone or two ‘til we found a waterhole about the size of a blue-collar swimming pool, as a couple of cows raised their heads at some funny-looking conquistadors riding in to lay claim to their land.

Reels, poles, corks, hooks and a cup of Charlie in hand, we hit the bank and found four spots for sporting. Three-and-a-half, actually, with little brother close in tow to whomever was nearest the action.

When catfishing, unlike when bass fishing, one sinks bait and sits, waiting for old potty-mouth to come whisker-sniffing and vacuum up the miniature refuse pile caked on one’s treble hook.

Pungency and patience soon were rewarded, as a couple of us hauled in some eating-sized cats. But little brother hadn’t gotten a bite.

Sneakily, Big Bro’ devised a scheme to distract the little fella, and made middle brother and me swear complicity. Leaving our rods and reels posted in some PVC pipe we had stuck in the ground, we took the tyke around some high grass ostensibly to get a closer look at a cow. Big Bro’ then hooked the biggest fish we had caught on Little Bro’s pole, and slid the fat boy back into the pond.

“Y’all come quick!  I think little brother’s hooked a hoss!”

Tripping over ruts and anthills, the tot took the lead as we raced back to grab the pole already bent like a willow branch, its line pulled taught by that slimy-skinned, bottom-seeking diver.

“Here, little fella, grab a hold and start reeling!  I’ll let out the drag a bit so he don’t snap that line,” Big Bro’ blurted frantically. Eyes bulging widely like he’d just seen a T. Rex, Little Bro’ caught hold, his fingers blanched like pale noodles rapped around the rod handle.

Each of us pitched in to get that river hog hoisted up on the bank before it took our little guy for a muddy ride. We finally hauled in the big croaker, its fins erect in a full-fledged defensive posture.

“Grab that sucker behind those fins, while I get the pliers out to unhook him.”

I’m sure I’ve never seen a more ecstatic, euphoric child, as Big Bro’ praised him to the skies for his natural angling skills, telling him how proud his grandparents would be when they heard about his adventure.

That was a time before cell phone cameras and Facebook posts. But my brain took a record of the experience – a rich one, with sights, smells, and personal histories – all captured on the Kodak paper background of relationships that never fade, despite that challenge of passing years.

Who knows what measure of confidence a child gained that day because of the actions of his oldest brother? Who knows how big that ailing heart swelled to see a little boy reveling in pure joy? Who knows how many angels smiled and sang because of a kindness shown?  Because, at that time, in that particular place, four children simply and joyfully played before the Lord in the tall grass by a pond where cows stood knee-deep in muddy water to watch the show?

Years later, while visiting Big Bro’ in a hospital where he waited, hoping for the heart that never was to come, I drifted back to that warm and innocent summer day on the pond bank, thinking then, as now, of the irony: he surely had possessed the biggest, healthiest heart in the room. And, a donor himself, he left a part of it here with us.

Looking for the Springs

I remember, as a boy, walking in the countryside with Dad to a place at the edge of the woods where, in his youth, he had quenched his thirst with cool spring water after ploughing the fields. He found the spring, which had become overgrown and silted over the years. All I could see was mud. But Dad knew there was a wellspring of sparkling, cool, refreshing water below. After clearing some debris, the water began to freely flow and wash away the impurities. In just a few moments, there was enough fresh water so that we could each dip our hands in for a drink. I remember thinking that water was the best tasting, most satisfying liquid that had ever passed through my lips. And all it took was a seeker who remembered where the spring was, and who cared enough to clear the way.

Thinking back on this experience, I see it metaphorically as a lesson for care partners of those who have dementia. We know our loved ones, their unique self – elements that still persist despite cognitive impairment. We know where to find their personhood, although dementia’s debris may have impaired its expression. If we care, then perhaps we can find ways (the create arts, reminiscence, pets, children, any shared activity, being present and attentive, laughter, play, nature, mindful listening, engaging imagination, and many others) to remove the obstructions so that the clear waters of the self can begin to flow again. And even a small sip of the spiritual essence of another person can be soul – filling.

So let’s go hunting for the inner springs, clear out the stream beds, and watch the waters freely flow.

#Alzheimers #Dementia #Caregiving #CultureOfCompassion

Facing Reality

It seems to me that our society has an increasingly difficult time facing reality. That’s a very unhealthy situation, as I myself know from experience. Could it be that most of us can’t find the inner resources to deal with it? Isn’t it really about the loss of control, facing our own mortality in many disguises, not bearing the pain until it transforms us, and not trusting deeply enough that the Love of God is the greatest force in the universe? How wonderful would it be if we set about on a mission of inner enrichment of ourselves and others through connection, contemplation, creativity, compassion, spreading the faith, listening to the stories of those who have walked through hell and come out reborn on the other side, and sharing our own stories of struggle and triumph?