The Beggar

O gracious God, help me to see

each beggar by the road as me,

with hope’s last flame an outstretched hand

for water in a desert land.

And grant this answered prayer today,

for strength to walk the weary way

with others, so that they would see

Your Spirit come alive through me.

In such a way, the lost are found,

the common path made Holy Ground

because You love this world and me

enough to share our poverty.

FullSizeRender (8)

What My Soul Looks Like

If I could know what my soul looks like

I think I’d see a rocker on a hardwood floor

creaking quietly the heart of its rhythmic chant —

I’d touch with clutching hands the worn silk

or cotton foldings of an elder’s garb —

I’d feel myself in every curve and corner

like the last puzzle piece put back into

the one and only place in the cosmos

from which it was cut, to which it must return —

I’d hear my name the way it must have sounded

in purity of silence before ever being spoken,

before anything on earth had ever heard its name —

I’d look into oceanic depths of the kindest eyes

and feel their pulsing colors painting the canvas

of me always alive and safe and whole —

I’d know for the first time the blessed absence

of a cold longing that can only end in the warmth

and abiding foundness of an all-embracing Love.

FullSizeRender (7)

An Addict With Alzheimer’s

He made himself known in the
bathroom of a halfway house
where by the bed he’d lost
his borrowed dime store glasses
with bottle thick lenses through
which his crooked world was framed
and missing the mark like something
he thought less than man or woman
he tottered downcast and blinded
toward the bed to wait for Mama’s
forehead kiss and trusted tucking
safe into the feathered shell of night.IMG_2399

The Path

I want to walk on the path tramped out
by those faithful poor who found beneath
the clamor of their faults the voice of the
one true soul whisperer who knew them
when they looked up from the last of many falls
and no one else could tell the mud from the
bloody tears but He fell down too and saw
the clear spring waters inside them come
welling out as He poured and poured and poured
with a cup called mercy from the never-drying
fountain of His dying living leveling lifting Love.

IMG_5022

The Kingdom Within

I wake to walk in the soul’s flaming darkness
where Presence burns and is not consumed.
In thick clouds stands the alter of Your dwelling,
among tall trees and silent pools;
grace-lined faces with kind eyes;
baby cries and dark-skinned beauties;
poor shepherds and kneeling kings.
Crippled things rise up and sing here.
All is health or healing in these winds,
where to be is to bend the knee,
bow the head and breathe.
No shame may enter this sanctuary
where dark and light are labeled “good.”
No battles fought but Love’s, with Love.
All is held. All is whole. All is free.

IMG_5510

At the Cemetery

I’ve often passed by, but never stopped.

Yesterday, some energy called “home”

drew the iron core of me

toward an always open gate.

In that place, beneath raindrop-robed

crepe myrtle choirs, leaning crosses

and lichen-layered angel wings,

among family plots of fallen tomb bricks

wrapped in running summer vines,

reading weathered elegies for the ancient dead

like Braille for the blinded wanderer,

breathing sweet magnolia-scented blessings

offered up for those of us left living

on this sweltering stone of earth —

there knelt a linen-clad Child.

IMG_5560

Greenwood Cemetery (est. 1821) in the city of Tuscaloosa, Alabama

“Don’t You Remember?”

This post first appeared on Maria Shriver’s Women’s Alzheimer’s Movement website at this link: http://thewomensalzheimersmovement.org/dont-you-remember-daniel-potts/

“The battle of being mortal is the battle to maintain the integrity of one’s life—to avoid becoming so diminished or dissipated or subjugated that who you are becomes disconnected from who you were or who you want to be.” 
― 
Atul GawandeBeing Mortal: Medicine and What Matters in the End 

“Dad, you’ve already asked about that. Don’t you remember?”

“No.”

(To which might be added, “If I had, why would I be asking the question again?” Or perhaps, “I have a disease that causes me trouble with my short-term memory, don’t you remember? I’ll always be your father. Don’t you still love and value me, despite some changes that are happening due to Dementia?)

Though diligent to guard against it, I’m guilty of having said something like the quote, above, to my father and others. Such language should not be used when communicating with someone who has Alzheimer’s disease or another cause of Dementia, because it has the potential to make her or him feel “less than” by calling attention to losses. Our goal in a Dementia-friendly society (any society) should be the upbuilding of others through honoring those elements of personhood that remain, enabling their expression and integration within a safe, supportive, creative, compassionate community. This will help to preserve the life integrity of which Gawande speaks in the aforementioned quote.

Instead of inadvertently tagging others with their deficits through the ways in which we communicate, we should help them to craft and raise beautiful banners of selfhood to honor the dignity and worth no child of God can ever lose. Our language, both in speaking to someone with Dementia, and in discussing the topic in general, should always destigmatize rather than label. This creates culture change, helping to bring about a culture of compassion.

Denial, universally experienced by care partners and loved ones of people who have Dementia, often underlies the language we use. When I expect my father to remember something that just happened or was said recently, I fail to face the reality that his immediate recall has been affected by a disease. This would be equivalent to inviting someone whom I know to have severe congestive heart failure to join me on a ten-mile hike, then asking “why” when she declines. I might as well remind her and tell everyone else that she has lost her ability to function like a “normal” person because of her disability.

In my experience as a Neurologist, I’ve noted that most of us fail to see conditions that affect the brain’s cognitive function in the same light as other physical ailments. Perhaps it is harder for us to accept illnesses that affect the personalities and communication skills of those whom we love, than illnesses that primarily have physical effects.

Additionally, it is likely that many of us are undereducated on the symptoms and manifestations of Alzheimer’s disease and other causes of Dementia. Because Alzheimer’s causes early damage to the hippocampus, the brain’s “save button,” new information has a hard time finding its way into memory, thus making it unavailable for later retrieval. How many times have I blamed my laptop for losing data, having failed, myself, to click “save”?

With denial comes another element common to the psyches of care partners, one that also finds its way into the language that we use: holding persons with Dementia accountable to continue to fill roles and constructed identities we assign them in our minds. I am who I am, in part, because my father has been my father in relation to me, through all the many facets of that relationship. If my father, because of Dementia, no longer completely resembles the image my mind created to represent him, then I will either 1) deny his losses to leave that image intact, 2) acknowledge his losses and resent the unfairness of it all and the suffering this causes him and me, or 3) accept, grieve for and adapt to his losses while affirming his remaining abilities. The latter is the only response that validates and honors his personhood while infusing life into our relationship. It is also the only response that calls forth my best human qualities as a care partner, including forgiveness for any past traumas associated with the relationship. We are human.  We may harbor some resentment, even anger over what is happening, but we must move on to acceptance, adaptation and affirmation.

“Care giving is either a judgment of who we are or a fruition of who we are meant to be.”              – Dr. James Houston

If I remain self-centered and wrapped (trapped) in my own ego, it will be very difficult for me to find any success as a care partner. Denial, resentment, self-pity, bitterness, anger, isolation, and depression will ensue, and emotional reactivity and my own uncontrolled anxiety will be harmful to both my loved one with Dementia and me, adversely affecting our relationship. Our language, both verbal and nonverbal, will convey this negative tone.

Making the transition (through conscious choice) to acceptance, adaptation and affirmation can be difficult, in part, because losses experienced by those we love are somehow our own losses, as well. Coming close to mortality in another produces a kind of death within ourselves. This is never easy, but can be a catalyst for growth, if we remain intentional and compassionate in our mindset and approach. We can do very little about Dementia, but we can do a lot about our response to it, a response that can make meaning of the time we have been given.

Expressed poignantly by Simone Campbell, “Touching that which causes us to weep can liberate the transforming fire of hope within us.” Such hope can then light the path we are privileged (yes, privileged) to walk with our loved one, birthing the gratitude that can bring life enrichment from the experiences of each new day.

The language with which we communicate with those who have Dementia, both verbal and non-verbal, lays the framework for the entire care partnership. This includes periods of silence and simple togetherness, which may heal and connect better than words. The foundation, of course, is love. Things will seem to fall apart at times, but the framework will stand if held together with compassion.

And we must also speak to ourselves, as care partners, with this same compassionate voice, lest we become disconnected from who [we] were or who [we] want to be.”

“Don’t you remember?” – people with Dementia may be asking this of us.

“Sometimes my memory fails me, too. But there’s nowhere I’d rather be than right here, right now, with you.”