“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.”

A Warehouse Wall

While looking for a shaft of sunlight
with its shadows bidden to dancing
or the next retina washing hue
to strike at some quickening angle
I saw the bricks of a warehouse wall
having been well observed judging from
the names and inscribed symbols displayed
on the tattooed leather of its doors.
“I’m running out of storage,” I thought
while moving toward what must have been
set props for Juliets, Romeos
to keep from dying somewhere alone.
I’ve learned not to question why I stop.
For all I know this could have been an
unchurched child’s lone plot of Holy Ground
who stacked her shame on pallets backstage
and sauntered free for welcoming crowds
worshiping a God whose real name she
didn’t know yet who had etched hers on
the bricks and metal of his own skin.

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Another Poor Man’s Hand

To sit in the dry stream bed of yourself
when life starts to rain like spring-fed fire
sending snow melt and showers from
the mountain’s dark low-lying cloud,
to stand like a craggy earth-clinging oak
after all other mourners have filed past
leaving you to deal with dead day places
only you can see as clods of yesterday
spill into the closing grave of now,
to lie on a cold hardwood floor
when the closest neighbor is you
crying to the calling night wind
with one last hope for hearing echoes
from a song that sings itself of living love,
living, not dying, grace-grown and given,
brooding over the bones of your broken body –
is to be the beggar by the pool who never knew
this world contained the only balm
with power to make him whole
until that day, that word, that blessed touch
of another poor man’s hand.

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All in a Face

“There is no greater agony than bearing an untold story inside you.” – Maya Angelou

Last night, our daughter suggested that her mother and I join her in watching The King’s Speech, one of our family’s favorite films. A scene (one of many) in the film defies description. I am going to attempt to decipher its effects on me.

King George VI of the United Kingdom has just given the famous address to his subjects as World War II is commencing, having done so beautifully conducted by Lionel Logue, the speech therapist who liberated him from the life-long prison of a terrible speech impediment. The whole plot has moved to this moment of trial and triumph for the king, to which he has ascended through enticement of the inner voice by Logue and his acrobatic, graceful, sometimes scandalous techniques.

Having made a historic and monumentally important delivery, George (or “Bertie,” the title reserved for blood kin and Logue) entered a room full of relieved and adoring statesmen, family members and advisers a changed man, appearing regal and confident for the first time in the film, already having fought what may have been the most important battle of his reign: that over his own pain, fear and associated disability.

As the light of glory supported the statuesque monarch amidst the admiration of his associates, the camera panned to Logue at his position in the wings. It is this epilogue that I find to be the most moving scene of the story.

Enfleshed in the face of Logue (played brilliantly by Geoffrey Rush) is expressed a most honored and humbling realization that teachers, mentors and parents have described to me, and that I, myself, have experienced. A voice instructor of mine said it best: “My job is to help you to find your true voice,” recounting the pride and gratitude that comes from knowing one has played a role in that discovery for a student.

The skill, humanity, and passion with which Rush displayed and communicated those emotions that Logue must have experienced are awe-inspiring, at least for me. Looking deeply into the actor’s face, however, so much more was to be found. Joy was there, to be sure, but tempered and tamed; a settled rest at the end of a struggle, experienced in a heart that has gone no short distance along the painful, yet valiant journey of a traumatized child crying in staccato bursts through cracks in the frightened, frustrated, stuttering façade of a man.

I am thankful to have experienced that moment in the film, to have seen the light in Logue’s face, moonlight to Bertie’s sun, from the quiet conductor of a stirring concert of speech that bolstered the confidence of thousands, sharing hope and courage from one who may have discovered those qualities in himself through the efforts of an unlikely teacher to a king – one who believed in his pupil – who had heard the still-hidden voice and knew it could sing.

Ironically, then, the most powerful message of the film was communicated entirely without words.

For stories worth retelling, for teachers with the skills and desire to bring out the best in others, for artists who possess the gift of communication, and for the incredible power of human perception, I am grateful, today.

In Gratitude

I woke this morning and drew a breath of clean, sustaining air, stood on legs that held me securely on a floor that I did not build. With eyes that still can see, I made my way down stairs with balance enough to keep from falling. I was greeted by a little dog wagging with joy to be alive, knowing no other way to be, and happy to see me. The melodies of waking birds awoke my ears, and I was able to step outside and feel cool ran drops on my skin. I have the comfort to know my family is safe and protected, as I sit in silence to read and pray. I am relatively free from pain, and I can look at life with a radiant hope because the light of God has risen in my heart, and darkness has not overcome it. I can rise, live this day, and lie down to sleep at night knowing that I am eternally loved and free, and nothing can change that. I have a purpose and a calling that is greater than my weakness and mistakes. I’m forgiven, embraced, and empowered. Pondering all of this brings me to my knees with humility and gratitude for nothing that I have done or have deserved, but for what has been done unto me in compassion, mercy and generosity. A heart so full has no choice but to sing.

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Being Present

Sometimes when you sit
close by in silence
and the still water
of you pools around
these pebbles of me
we go to a place
of most beautiful
clouds and soft sweet rain
and come back laughing
because we can cry.

IMG_0411 (Edited)