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)

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Seven

Walk with me by the river
in the mist of waking dawn
as the wood duck sets her wing
to the rhythm of Earthrise
and every sun ray angle
‘luminates the diamond depth
of all things stirring to this
great green gathering alive.

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Shadowlands

O Love Divine,

If I may come to know You only in Shadowlands

with outstretched arms to feel my way by faith,

then make me poor and honest enough

to acknowledge my blind need

yet plenty brave to feel

the contour of Your face.

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Christmas Poinsettia in Spring

The seasons pass.

What can such morphing mean

when blood bygone

goes gradually to green?

 

A birth, a life,

a calling and a name;

grace in falling,

gained and granted, then came.

 

Fullness flowing

freely through inner veins;

rivers channel

from reservoirs of stains.

 

One who tunes to

seasons of silence knows

truth’s worth and gain:

Life, in the giving, grows.

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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.

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Hunter County

(a poem about Alzheimer’s disease)

My home is in Hunter County.
That’s where I was raised.
Do you know where that is?
You see, I’m old.
I finished high school there.
My parents sent me away to college.
All my children finished school.
I used to sing the blues.
Then I got born again.
Excuse me, but can you
tell me where I am?
My children don’t know where to find me.
My home is in Hunter County.
That’s where I was raised.
Do you know where that is?
I’ve been born again.

 

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.