Walk. Don’t Walk. Red Light. Green. We know what these signals mean stepping rotely down the street, buttoned coats and booted feet. Warmly wrapped inside our minds camouflaged behind our blinds, hiding so no one can see wounded parts of you and me. Every now and then, per chance, providence or happenstance puts our bodies in a space very near another face. Not just any face, you see, but a dark eternity in some sad and sunken eyes, destitute, demoralized. What to make of things we’ve seen? What do all these signals mean? Signs we’ll never recognize if we won’t hypothesize how we’d feel if we had been ones that walked away again from ourselves in the disguise of a lonely stranger’s eyes. Walk. Don’t Walk. Red Light. Green. There are faces in between.
Art by Lester E. Potts, Jr., an artist who had Alzheimer’s disease
I certainly understand and agree with individual and societal due diligence to own, remove and guard against stigma-fueling stereotypical or derogatory language or depictions of individuals or groups that traditionally have borne the brunt of this activity.
But I don’t see much discussion of the importance of also applying this standard to persons living with Alzheimer’s disease or other dementias. And why not?
It is essential that we, as individuals, and collectively, as a society, take a stand to end stereotypical, derogatory, patronizing, comical, or otherwise negative depictions or descriptions of persons living with Alzheimer’s disease and other dementias.
This poem is dedicated to persons living with dementia and their care partners. It speaks to a love that’s stronger than any condition or circumstance.
Deep as an ocean cavern, through and through, Strong as the tide that draws me out for you, Free as a sea bird soaring through the blue, Ours is a love that paints upon the sky.
Taut as an anchor steeled against the gale, True as a ship that homeward sets a-sail, Comfortable as salt water to a whale, Ours is a love that deepens bye and bye.
Seeking to venerate the self within, Knowing our own capacity for sin, Laying life down to take it up again, Ours is a love that cares enough to die.
Still as a mountain-cradled alpine lake, Full as a mother’s heart about to break, Meek as a prisoner for mercy’s sake, Ours is a love that’s brave enough to cry.
Turning to face the storms that head our way, Pledging to hold each other, come what may, Knowing we may not find the light of day, Ours is a love that promises to try.
Before I go to bed, I think I’ll meditate on the sermon of a murderer (Moses; Deuteronomy 30) the contrition of an adulterer (David; Psalm 51) the last-ditch plea of a robber (Thief on the cross; Luke 23:42) the repeated lies of a denier (Peter; Matthew 26:69-75) the scandalous actions of a former demoniac (Mary; Matthew 26:6-13) the confessions of a zealous persecutor (Paul; Romans 7:14-25) the outlandish teachings of a itinerant Rabbi (Jesus; Matthew 5), and then, having been persuaded that there is hope for me, I think I’ll write a poem about love, mercy and grace.
You are alive to God, held like a jewel embedded in the tapestry of Love. Reality, in its totality, is woven of this Love, each thread chosen with care by the master Artist. See the beauty of its fabric all around, embracing, supporting, holding, remembering, revealing, promising, hoping, assuring. Gem-like you, set as a star in the sleepless eternity of the mind and memory of God.
I wanted to drop a note to let you know how much I appreciate you visiting me. I’m sorry if I appeared aloof or rude at the start. It’s just that, well, you seemed so put together. And I’m so not. And I guess I labeled you for that. But as our meetings went on, I realized I was wrong.
Thank you for sharing your real life with me. Mostly, I wanted to thank you for listening. For hearing me, and not pre-judging or pitying me.
Someone told me one time that when we judge or pity we place ourselves above others, not beside them. And who gives us the right to stand above anyone else? I’m pretty sure we all need people beside us. Who are not afraid to look into our faces, our eyes.
Truth be told, sometimes I’m afraid to look into my own. Because all I see is disappointment. And anger. And fear. You know what? I don’t think you’re disappointed in me.
I think maybe you told yourself you’d look for the best in me. I don’t know if you found anything, but you made me feel like you did.
There’s a lot of my story you don’t know. But you know more than most, now. There’s a lot I wish I could re-write. I think you are helping me to start on that. And you’ll be in some of the chapters.
Someone also told me this. Mercy is hardest to have on ourselves. This probably seems strange, but I think I’ll nickname you “Mercy.” Because I can see it in your eyes. Hear it in your voice, even when you’re silent.
Our chaplain says God’s mercy is from everlasting to everlasting. I’m pretty sure that means it’ll outlast my sentence.
Somehow, I think when I hear it proclaimed, when I hear God say I’m pardoned, that you’ll hear it, too, standing beside me.
That particular Sunday afternoon was rainy, as I recall. Though I may have consigned the rains from a different day.
No matter. Painters of stories have ever-expanding palettes from which to select their hues. This story calls for rain. Cold, slow, slate-gray.
I see them striking his nursing home window…raindrop bombers on their sorties of sympathy, mortally wounded upon impact, leaving tails of colorless liquid life behind them on their earthward descent, martyrs for dignity lost.
The ever-faithful caregiver, Mama needed a few hours to buy groceries and run another errand or two. I offered to sit with Dad while she stole away. Reluctantly, she agreed. Rarely do sighs of self-compassion silence the sentence of guilt, that stealthy accuser of all caregivers.
Truth told, I needed those hours, as well. My father, Lester, was nearing the end of his earthly toil, my inner clinician sensed. “You’ll just know,” they told me during residency.
Apart from the medical evidence – bouts of recurrent aspiration, waxing and waning fever, erratic vital signs, a peculiar transparency of the skin that no one had described during my training, but that I had observed in many of the dying…purplish patches that resembled low-lying storm clouds in an eastern sky at sunset, a sinking-in of eyes, desiccated mucosa – there was a deeper movement sensed, a present summoning of energies, a final gathering call.
This, I heard that day, as the pocked earth pooled mid-September rains.
The terrible torrents of Alzheimer’s disease had washed over our family, leaving us clinging to the promontory of Dad’s personhood, still solidly jutting out over the breakers like some ebenezar to the God of the sea who makes rains to fall on the righteous and the unjust, alike.
He, the righteous, was the best man I’ve ever known. And I needed to tell him so, before the rolling of life’s final tide.
Others have said, “If only I had it to do over, I’d have told her everything I’d ever wished to have said. I didn’t say, often enough, how much I loved her.” Does anyone get a chance to do this before their loved one dies? The pining of such lost opportunities adds to the lore of death’s sweet sorrow. Yet, it seemed I was being granted a shot.
Grace, through the painful odyssey of Alzheimer’s, had provided some uplifts of beauty, hope and comfort, primarily through the discovery of Dad’s unknown artistic talent at a marvelous adult day center he had attended. There, he’d worked with a retired artist and caring staff who knew where to look for the hidden riches inside each person, and had cleared the way, with compassion and empathy, for them to come forth.
What came forth was the part of him that was still at home when the rest had wandered away. It was beautiful. And it was with me in that room, as Mama got her purse and coat and left us together, behind a nearly-shut door.
The face of the human presents itself, naked and real, daring us to be human, too. Death, even in those who are fully alive, is written between the lines, waiting to see if we will turn away when the suffering starts. Those brave enough to hold the gaze will see God, even if they cannot name God in the experience. Some will take their shoes off, sensing the ground is holy. That day, I had resolved to hold the gaze, come what may. And somehow, I was given the grace to do it, though there would be times to come when I would turn away.
Rolling a wheelchair in front of the reclining chair where Dad was sitting, I sat, and walked it so close that my knees almost touched his. I came eye level to him, and placed my right hand upon his left, his fingers drawn into progressive flexion contracture, almost unusable. But still present for holding.
Looking into his eyes for a few seconds, silently, I saw a pain that had grown weary of itself, expressive only of emptiness, save for the episodic frown or tearless cry that had become unhinged from its underlying emotional state like a sardonic mask in a tragedy.
I began to speak, wondering if he would understand. If my words would have the unintended effect of making his suffering worse, if I would harm him in some unforeseen way by trying to speak some life into his dead places. I wondered, and breathed a prayer before breaking the surface of the almost silent, rain-dropped puddle of air.
“Papa, I want to tell you something today. You’re the best man I’ve ever known. The finest example of fatherhood a child could ever have. And I thank you with all my heart for loving me.”
His face contorted like a coming cry, remaining tearless, then settled back into a stare, but one that shot straight into my soul.
“You always did your best to be the man you felt God wanted you to be. When you failed, you didn’t let it discourage you. You kept being your solid self, faithful and strong. Thank you for that, Papa.”
He briefly turned away, seemingly embarrassed to look into my eyes. He always had been humble.
“You took such good care of Mama and me. You worked so hard all your life, and provided so well for us. I know there were hard times. But you kept the faith. And you never complained. Thank you, Papa.” I patted his rigid arm.
“You modeled a beautiful faith, not just for me, but many others to see. You bore the light God had given you to bear, and brought hope and encouragement to so many lives by it. Thank you for doing this, Papa.” Another tearless, weeping frown.
“Papa, I know you have suffered, that these years must have been hard. But you have borne them with such courage, such faith, such quiet resilience. Please forgive me for the times I couldn’t hear you, couldn’t help, couldn’t understand, perhaps couldn’t love you like you needed to be loved. Please forgive me.”
He looked through me to some other place where hope had anchored itself and the line was drawing taught at day’s end.
And then I said something I felt he may have needed to hear from his child he’d soon be leaving behind. Knowing his heart, his faithfulness, integrity, dependability and honor, his total commitment to the well-being of those he loved, I sensed he may have been grieved to feel he would be failing me by dying. Perhaps his ailing mind wondered if I’d understand, if I’d be disappointed, if I’d forgive. So, finally, I told him this.
“Papa, I don’t know if you are hanging on for Mama and me. But if you are, please know that you don’t have to. If you are tired and want to go home to rest in God, then let go and go home. If you feel God is calling you to rest, then it’s OK. Go to Him. Mama and I will be all right. We will always love you, Papa. Your life will go on with us, right here, with us. I love you, Papa.”
Perhaps my mind crafted this image from the beauty and brokenness of the moment, but I will always feel his face changed somehow after that. Maybe it was just my wishing for God to speak, “Peace, be still,” over his storm-swept billows, to give him some resolute and solemn assurance that everything was going to be all right, both in this world and the next, if he was to release his hold on earth and trust to the life-line anchored in the Haven of Rest, a home he’d never let go of when the windows were cracking and the walls falling. The place from which His Father had led the faithful servant through perils to palaces.
I left the nursing home in a waning rain, and unexpectedly saw a few shades of an early autumn sunset splay themselves across cracks in a towering westward cloud bank. As I sat in my car in silence, I knew I would remember this day in gratitude for the rest of my life. And I prayed that someday, someone would tell me it’s all right to let go.
Artwork by Lester E. Potts, Jr., an artist who had Alzheimer’s disease
