Riding Dementia’s Roller Coaster

Anyone who lives with dementia must learn to ride emotional roller coasters. The rises and dips, twists and turns,  happen abruptly and without warning. Behaviors and moods of people with Alzheimer’s disease or other forms of dementia can dramatically change in a split second.

Caregivers know the experience well! A smile instantly turns to a scowl. Cooperation suddenly pivots to conflict. Calm explodes into rage. Affection gives way to rejection. Coherence suddenly gets shattered by confusion.

Sometimes the ride is exhilarating as an unexpected smile or moment of recognition appears. Other times the ride takes a plunge into the abyss of grief or turns sharply toward more confusion. Then, there are periods when the journey plateaus and moves ahead with relative calm and predictability.

But riding roller coasters is exhausting, even dangerous! I’m still learning and sometimes all I can do is hold on for dear life and brace myself for the final plunge downward. Yet, I’ve learned a few lessons.

One, don’t ride the rollercoaster by yourself! I need other people with me. . .to hold onto. . .to scream with me. . .to comfort me! We need others to steady us enduring the ups and downs, the twists and turns. And, it’s comforting to know that others are on the ride with you.

Two, scream when you feel like it! Screams are laments. Laments are not only therapeutic; they are the forerunners of hope. They are the weeping of the night in preparation for the joy that comes in the morning.

Three, relish each moment rather than fear the next twist or turn or dip. Learning to live in the present moment isn’t easy but it’s the only real time for those with dementia. Each moment contains potential life, love, and connection. Grab it before it’s gone!

Four, reach out and touch! A gentle touch or embrace of the one trapped in dementia’s turbulence brings solace to both. Touch communicates when words fail and thoughts flee.

Five, look up! The roller coaster isn’t the total reality. The sun and stars remain in their course. There is a world beyond the tumult of the present.

Six, sing! Music harmonizes, calms, inspires, touches deep places in the heart when the brain falters.

Seven, trust the permanence of love! “The steadfast love of the Lord never ceases; his mercies never come to an end” (Lamentations 3:22). God’s love never ends. Neither does ours!

Love does more than survive roller coaster rides; love grows stronger through the ups and downs, the twists and turns. So, hold on tight to love!

 

 

 

“Not What Do You Believe, But What Do You DO?”

It was an unlikely place for a theological discussion! I was undergoing a medical test that required a lot of waiting and interaction with a technician.

Noting a book I was reading by Walter Brueggemann and having seen on my chart that I had taught at Duke, he asked, “Are you a liberal or conservative?”

“I don’t  really like labels. I’m liberal on some things and conservative on others,” I responded.

“Well, what do you believe?” he retorted.

“Believe about what?” I asked.

“About God, Jesus,  and the Bible,” he said.

“Wow, that’s a lot to cover. I have lots of beliefs about those topics, but I’m not sure that what I believe about them is the most important thing.”

“Oh? Then, what is most important about being religious?” he inquired with interest.

I replied, “I think a more important question is, What do you do? What do you practice? How do you behave, treat people?”

There followed several minutes of conversation about treating people with respect, dignity, compassion, justice, and hospitality.

“But beliefs are important, aren’t they?” he pushed.

I responded, “Definitely! They should motivate, form, and guide what we do. The validity of our beliefs is what kind of persons they produce. The test is what’s in our hearts more than what’s in our heads.”

Continuing, I added, “You asked me what I believe about God, Jesus, and the Bible. Here it is in a nutshell. I believe God is love and that love became flesh in Jesus who shows us what it means to love and empowers us to love one another as God loves us. The Bible is the story of the unfolding of that love.”

With calmness, he reflected, “So, you’re more concerned about what I do than what I believe? Right?”

I remarked: “I’m interested in both, but our actions reveal our true beliefs. Your kindness, respect, and compassion indicate to me that you know God as love, kindness, and justice. You may not even call that “God” but to practice love, generosity, hospitality, and justice is to “believe” in God as I understand the term.”

As the tests and wait continued, the conversation turned to our shared concern for loved ones living with dementia. He was no longer curious about whether I was “liberal” or “conservative,” and I still don’t know what his religious formulations are.

I do know that in that brief exchange two people treated one another with mutual respect, compassion, and dignity. In so doing, we pointed to what the Lord requires: “to do justice, to love kindness, and to walk humbly with your God” (Micah 6:8 NRSV)

 

Linda’s Birthday

Birthdays are occasions to declare that people are stories rather than symptoms; and sharing love is the abiding theme of our stories. In the sharing of love, our stories intersect with God’s Story.
Thank you, Linda, for your remarkable story of love! Being part of that story is the greatest joy of my life.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

as Linda moves deeper into her dementia

Christmas Realities

I write this in the predawn hours sitting beside Linda’s bed as she drifts further into the darkness of dementia. Personal grief hovers like a foreboding storm cloud.

The news is dominated by a dysfunctional government caught in the tug of war over a border wall. Political instability is spawning authoritarianism here and around the world and tribalism is shattering  the common good.

Reports of a plummeting stock market compounds uncertainty and anxiety. Will there be enough in pensions and savings to meet the escalating costs of basic needs?

Accounts of more violence in our local community  have become part of the daily news, and this morning is no exception.

While I read these news reports and ponder present and impending loss, Christmas carols play in the background: “Silent Night,” “Hark! The Herald Angels Sing,” “O Little Town of Bethlehem,” “What Child Is This,” “Away in a Manger.”

The dissonance is palpable! All is not calm and bright! Peace and goodwill seem an idle dream.

The surrounding darkness,  widespread discord, and lurking danger seem to render images of a babe lying peacefully in a manger and a heavenly choir harmoniously singing to lowly shepherds a fanciful escape from the real world.

But, no! The Christmas story as told in the Gospels IS THE REAL WORLD! The infinite and eternal God enters the finite and temporal. The Word has become flesh and dwelt among us.

In the midst of political oppression and economic injustice of the Roman despots Herod and Quirinius, a baby is born to a peasant teenager.

Made homeless by governmental decree, Mary gives birth in a stable in the dark of the night in the remote village of Bethlehem.

Fleeing brutality and violence, the vulnerable family migrate to Egypt as an insecure emperor cruelly slaughters innocent children. The wailing of grieving mothers pierces the silent night.

Grief, poverty, homelessness, migration, violence, dysfunctional governments, power hungry politicians! We know these realities all too well!

Christmas, however, speaks of another reality which beckons us toward a new world where

  • the least and most vulnerable birth God’s presence and purposes
  • the power of love supersedes the love of power
  • the poor and powerless have access to  God’s abundance
  • bridges of hospitality replace walls of exclusion
  • the grieving are not left alone with their tears
  •  forgiveness erases vengeance
  • kindness blots out cruelty
  • peace and goodwill supplant war and hostility

Here is the Good News of Christmas: God’s reality wins! “The light shines in the darkness and the darkness cannot overcome it!” That’s the gospel truth!

 

 

 

Dayspring Christmas Prayer

The retirement community in which we live had its annual Advent/Christmas Dinner Friday. Below is the Invocation/Blessing which I offered.

Generous and loving God, we gather amid the beauty, safety, and abundance of our Dayspring community to celebrate your coming into a world amid darkness, poverty, violence, and oppression.

  • May our festive celebration be a reminder of the world-transforming message of Jesus’ birth.
  • May the beauty of our surroundings open our eyes to your veiled beauty present even in the bleakness and darkness.
  • In the lavishness of the food may we taste the extravagance of your grace revealed in the miracle at Bethlehem.
  • May the warmth of our fellowship widen the circle of our love to include all your children, especially the lowly and vulnerable who were the first to humbly worshipped the newborn child.
  • And may the joy we share in celebrating your birth overflow and sustain us in times of grief, frailty, and loneliness, as it inspired the shepherds to sing “Glory to God in the highest!”
  • And may our gratitude for this meal result in our living generously, compassionately, and justly as did Jesus whose birth we celebrate; and in whose name we pray. Amen

An Unexpected Communion

It happened shortly after a visit last week from Karen, the hospice chaplain and friend who visits Linda regularly. We sat in the sunroom and listened to Linda as she mumbled  incoherently but keeping time with the music playing in the background.

As she always does, Karen ended her visit with a short prayer, calling Linda by name and asking Jesus to continue to be with her.

Shortly thereafter we returned Linda to her bed for her evening meal. As the caregiver, Arlene, slowly and gently placed the pureed food in Linda’s mouth, Linda slowly and clearly spoke these surprising words, “Have. . .  Communion. . . today.”

Arlene called to me to come from the kitchen where I was preparing Linda a dish of her favorite dessert, ice cream. She told me what Linda had just said. I asked if she wanted to have Communion. But, by this time, her thinking had moved on and her speech returned to scrambled words.

I ran to get grape juice and wafer which I keep on hand. By the time I returned, Linda was sound asleep.

Early the following morning before the caregiver arrived, I gave Linda her morning medication. She seemed especially alert, looking intently at me as I smiled and said, “I love you!”

I asked, “Linda, would you like Communion?” No visible response, only calm silence. I retrieved the chalice with grape juice and wafers.

Standing beside her bed, I sang “Jesus Loves Me” and “Amazing Grace.” Then I recited Psalm 23 and parts of Romans 8. She remained in uncharacteristic silence, even reverence. I prayed the Words of Institution from memory.

“We are remembering Jesus. He loves us and is with us now,” I said as I dipped the wafer in the cup and placed it on her tongue.

A slight smile and a glimmer of peace appeared on her face. “Thank you, Jesus, for loving us and being with us,” I prayed as I peered through my tear-stained eyes. She quickly drifted into a serene sleep.

It was a holy, transcendent moment of keep connection with God, one another, and “the great cloud of witnesses.”

The experience confirms the mystery of the Sacrament as well as the puzzle of the human mind. I don’t know for sure what triggered Linda’s comment, “have Communion today,” but I suspect it was Karen’s presence and prayer.

I really don’t know if she understood any of my words as I recited Scripture and sang familiar hymns. I can’t comprehend what was happening in her world as I placed on her tongue the signs of Jesus’ self-emptying love.

This I do know: There was more going on than can be intellectually understood by either Linda or me.

Furthermore, the most important ministry is PRESENCE! The chaplain’s attentive presence likely kindled an embedded memory and a connection that cannot be broken by brain disease!

 

 

Homily for Alzheimer’s Remembrance Service

 

Alzheimer's Awareness


[Below is the homily I delivered at an Awareness of Alzheimer’s Service held in the chapel of the retirement community where we live in recognition of Alzheimer’s Awareness.]

 

On a cold, rainy November day in 2009, Linda and I sat in the doctor’s office at Duke Medical Center awaiting the results of a series of neurological tests. The look on the faces of the doctor, nurse, and social worker foretold the somberness of the news.

With pathos in his voice and moisture in his eyes, the doctor said, “All the tests indicate that you, Mrs. Carder, have Frontotemperal Dementia.” There was that dreaded but suspected word “Dementia.”

Life hasn’t been the same since! Every aspect of our lives was altered—location, vocation, relationships, finances, and even how we understand ourselves, others, and God. The journey of “the long goodbye” confronts those on the journey with demanding challenges and perilous threats.

Little wonder that “dementia” has surpassed cancer as our most dreaded disease. It erases our past, transforms even family members into strangers, threatens our identity and sense of worth, and robs us of our capacities to think coherently and act decisively; and it cuts us off from community, thereby marginalizing and relegating us to a kind of exile.

Our family has lived with dementia for ten years. We know its devastation firsthand and experience it every moment of every day. I would not minimize the anguish involved, nor deny the relentless grief it entails.

But the awareness of Alzheimer’s and other dementias has deepened my awareness of two core affirmations of our faith. Let’s be aware of these affirmations as we remember those who live with these dreaded diseases called “dementia.”

One, our identity and worth and dignity do not lie in our individual memory, our intellect, or our capacities. We live in a hyper-rational, intellectual society that places primary value on productivity. Our sense of worth is derived from what we know, what we can produce.

We have bought into the Cartesian notion, “I think therefore I am.” Dementia relentlessly confounds our thinking and strips away our capacity to produce. But, it does not diminish our identity, our in worth, our dignity.

Our identity, worth, and dignity lie in the One to whom we belong, the one who breathed into us the divine spirit, nephish, stamped the divine image upon us, and redeemed us in Jesus Christ.

A Hebrew prophet of the Exile, declared “But now thus says the Lord, he who created you, O Jacob, he who formed you, O Israel: Do not fear, for I have redeemed you: I have called you by name, you are mine“ (Isaiah 43:1).

We may forget who we are, but God does not forget us. We may forget God, but God has engravened us on the palm of His hands!

The author of First John states it clearly: “See what love the Father has for us that we should be called children of God. Beloved, that’s who we are! We are God’s children now! It does not yet appear what we shall be, but when he appears, we shall be like him for we shall see him as he is” (1 John 3:1-2).

Our worth, identity, dignity and destiny are derived from this: We are created by God out of love, we bear the divine image, and we have been redeemed in Jesus Christ!

When Alzheimer’s or other dementia causes us to forget who we are, it is our responsibility as community and family to hold one another’s identity. We do so by treating those with dementia with the utmost respect, compassion, attentiveness, accepting their gifts, knowing their stories, loving them for who they are now and not simply for who they have been.

That’s the second affirmation I’ve had reinforced by living with dementia for a decade: The purpose of human existence is to share in the Triune God’s dance of love. After all we were created out of love and sustained by love.

Love really is the only thing that endures. In the Apostle Paul’s hymn to love, he reminds us that knowledge passes away, tongues (language) ceases, but love never ends. He further declares in Romans that nothing in all creation, and that includes dementia, can separate us from God’s love.

Linda has lost all recollection of our 57 years of marriage and she only occasionally recognizes me.

I often wonder if she knows that I love her. I assure her throughout the day with caresses of her face, brushing her teeth, combing her hair, feeding her, seeing that she is cared for respectfully and with dignity. I operate with this manta: When in doubt, love!

I know this for certain: Linda has expanded my capacity to love without expectations or reciprocity. Still, there are those moments of deep connection when her love breaks through her confusion and incoherent speech. Sometimes it’s a squeeze of the hand, a momentary twinkle in the eye, a fleeting smile.

And, occasionally there comes, seemingly out of nowhere, a verbal response. Yesterday morning as I was feeding her, I looked into her eyes and said, “Linda, I love you!” With unexpected clarity, she responded, “That’s so good!” That’ll do me for several days!

One of the nurses  who has cared for Linda the last four years remarked during a recent visit, “Linda has been loved to life!”

We all have been loved to life! It is our great privilege and divine calling to love one another to life! After all we are persistently loved to life by God!

As we love the most frail and vulnerable, those with Alzheimer’s and other forms of dementia, we are fulfilling the commandment Jesus gave his disciples: “Love one another as I have loved you!”

And, we are bearing witness to the Transcendent Love in which we live and move and have our being

Motivating Gratitude

 

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Our daughter, Sandra Nash, is the director of social services at White Oak Manor, a long-term care facility, in Newberry, SC (here). She recently posted the following on her Facebook page:

Moments of Thanksgiving at Work

As many of you know, I work in a long-term care facility, White Oak Manor in Newberry. Today I had a couple of different situations that really moved me. As I was walking down the hall, I greeted one of our residents, “Good morning! How are you doing today?”
Instead of what I expected, just a short reply “fine,” he responded, “Good morning! I am so thankful to be here!”  He said it with such assurance and like he really meant it!

Wow, here this man has had to give up his independence, many of his possessions, and is separated from his family and his reply was that he is thankful to be here!

In a separate situation, a resident was brought in by EMS after being in the hospital for a week or so. As he was being wheeled down the hallway towards his room, I heard him repeatedly say to staff members as he passed them how happy he was to be back. When I followed him to his room and talked to him, his eyes filled with tears. He emotionally said, “I am so glad to be home! I am back with my family,” referring to the staff and other residents.

These two men showed me how, no matter the challenges one may face, you can still find gratitude. How grateful I am to have found such a rewarding profession!!!

I’ve been pondering Sandra’s experience with my own sense of gratitude – gratitude for Sandra whose relationship with society’s most frail citizens is characterized by respect, compassion, kindness, and sensitivity, as well as skill and professionalism.

But her experiences with the two men also remind me of a profound truth: genuine gratitude springs from giving and receiving love!  Exuberant gratitude isn’t the dominate expression one hears in nursing facilities where people are absent from families and where the institutional bottom line is often efficiency and finances.

What a difference it makes when staff members see residents primarily

  • as stories to be heard more than symptoms to be treated
  • as welcomed guests rather than sources of needed revenue
  • as beloved children of God with inherent worth and dignity instead of problems to be overcome
  • as participants in the Triune God’s dance of love as opposed to dreaded chores to be done
  • as persons with gifts to be shared more than as frail recipients of paternalistic care

The two men Sandra encountered live with gratitude because they know that whenever and wherever we are loved we are “at home.” May we all know such gratitude, and may we be means by which others experience “home.”

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Prayer after the Election

 



praying-hands_1027_1024x768Sovereign God of justice and compassion, who judges all peoples, nations, institutions, and political parties: We pray for your mercy and guidance in the midst of our nation’s political turmoil and division.

Reconciling God, heal the painful wounds inflicted by our sharply partisan politics which elevates winning elections above honesty, respect, and the common good. Free us from narrow self-interest, insensitivity, and arrogance so that we can be agents of reconciliation in our families,  neighborhoods, and congregations.

Compassionate God, replace our hearts of stone with hearts beating with your life-giving mercy and kindness. Open our eyes to the hurts of others, clear our ears to hear the anguished cries of those who suffer,  transform our clinched fists into hands of generosity, and widen our arms to embrace all whom you love and for whom Christ died.

Righteous and holy God, whose righteousness is unyielding justice and whose holiness is unblemished love, empower us to defend “the orphans, widows, and immigrants” and purify our love of the blemishes of exclusion, superiority, and privilege.

Resurrecting and triumphant God, who in Jesus Christ conquered the powers of sin and death and is ever bringing order from chaos, liberation from bondage, reconciliation out of brokenness, strength from weakness, hope from despair, life from death: Grant us a renewed vision of your present and coming reign and a deepened commitment to seek first your kingdom and your righteousness.

To you, O Christ, belongs our final loyalty and through the power of the Holy Spirit, enable us to love you more dearly, serve you more faithfully, and praise you more joyfully. Amen

 

Prayer of Lament and Longing

gsblog2God of Love and Peace, who created us to live in harmony rooted in mutual respect, compassion, and justice: We have lost our way and now wander in the toxic wasteland of cruel hatred, shameful disrespect for the dignity of others, and the normalization of verbal and physical violence.  In such a time, our prayers seem powerless and we cry out, “How long, O Lord? How long?”

Hear our laments and turn them into actions on behalf of compassion, justice, and peace.

  • We lament the coarseness of our public discourse, while we long for civility
  • We lament the disrespect for those who differ from us, while we yearn for mutual respect amid our differences
  • We lament the tribal nature of our politics, while we long for commitment to the common good
  • We lament the inequity in our economics,  while we want all to have access to your table of abundance
  • We lament the arrogance of always having to be right, while we desire the humility to live with ambiguity and mystery
  • We lament the hatred and cruelty within our life together, while we hunger to love and to be loved

Move through the dark recesses of my own heart, O God, and purge me of all hatred, arrogance, prejudice, and ill-will. Create in me a clean heart and put a right spirit within me, that I may be an instrument of your Love and Peace. Amen.