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, laugh! As the poet Robert Frost said, “If we couldn’t laugh, we would go insane!”

Eight, 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

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

“She’s Been Loved to Life”

Clasping hands 2Linda entered Bethany, the memory care facility, in May 2015. It was a painful decision for us.  The subsequent eighteen months were the most excruciating I have experienced as she declined cognitively and physically.

By April 2016, she had lost 20 pounds and was becoming increasingly frail. After extensive medical evaluation, Linda was approved for hospice care.

She remained in Bethany for another six months. Confusion, fear, disorientation increased. She was gradually forgetting how to eat and walk. Her weight loss continued.

She was unable to perform minimal personal care, which made her ineligible for “assisted living.” She had to either be transferred to skilled nursing or taken home with full-time care.

I wanted her home! I asked the nurse practitioner for a prognosis of time remaining. Understandably, she was reluctant to project a time. But she said, “Perhaps six months to a year.”

It is now October 2018, thirty months since Linda was admitted to hospice care.  Although she can no longer walk and is confined to the bed and dependent for her personal care, she is more peaceful and less fearful.

“I would never have thought that she would still be with us!”  The nurse practitioner said with amazement during a recent visit.

As I stroked Linda’s hair and caressed her forehead, a pleasant smile and twinkle in the eyes appeared.

The usually stoic nurse said with evident emotion, “She’s been loved to life!”

Tearfully I responded. “We are determined to provide three things for her–physical and emotional safety, appropriate comfort, and the assurance that she is loved just as she is.”

“It’s obvious that she has all three. I just wish everybody could have what Linda has,” remarked the experienced and compassionate nurse.

I feel enormously blessed that Linda and I are both surrounded by love, and it is love that gives us life.

We are blessed with two daughters who love their mother with the unselfish love they received from her; and their families, including our grandchildren, share that love.

We have the help of caregivers to whom caring for Linda is a sacred vocation.

A couple from church bring a meal each Thursday, simply because they care.

A neighbor couple drop in almost every day to lend support.

I, too, wish everyone could have what we experience! Is that not what God desires for the human family–safety from unnecessary danger, comfort amid loss, and unconditional love and care?

We all need to be “loved to life!” Isn’t that why the church exists?

 

Artist Captures Mystery of Love’s Connections Amid Dementia

I was deeply touched by this ceramic work of art created by my daughter’s friend, Olga Yukhno. This particular sculpture was inspired by our family’s story of what we call “the birthday miracle of 2016.” Olga’s thought-provoking creation captures the mystery of the diseases that fall under the category of “dementia;” and it is testimony that the very BEING of people with dementia call forth our creativity, love, and gratitude. Below is Olga’s description of “The Sleeping Mind.”

Sleeping Mind

Sculpture by Olga Yukhno, Five Peaks Studio Art

Sleeping Mind

My best friend’s mother has dementia, and sadly she is no longer able to recognize any of her family members or even remember their names. One year, when the family went to visit her on her husband’s birthday, like a miracle, she opened her eyes, gave a big smile, and remembered everyone. She remembered their names and how they were related, and it was the most special birthday gift. When my friend told me this story, with tears in her eyes, that is the moment that inspired this piece. You can see the mind is asleep, but

there is still a connection to the heart. A long path, though difficult to traverse, can still sometimes be used. The big bell in the heart, all of the love and affection from decades of life, can reach the small bell in the mind, all of the memories and happy thoughts, and together they can wake up the sleeping mind.                   — By Olga Yukhno

Linda awakens to know her family and dog!        November 18, 2016

 

This sculpture, along with other sculptures by Olga Yukhno, is part of a series called “What Moves Us” and is now on display through September at Anastasia and Friends Art Gallery (more information here on gallery and Olga Yukhno)

Let’s Remove Stigma from Dementia

 ” Dealing with early stage Alzheimer’s, I’ve found the hardest part is the stigma that comes with it. Friends don’t come around as often. Is this true?????,” wrote a friend.

care-97984_1280“Don’t tell anybody! I don’t want anyone to know,” pleaded Linda when in 2009 we received word that she has Frontotemperal Dementia (FTD).

“They’ll treat me differently. They will think I’m crazy,” she added.

Studies indicate that people fear dementia more than they fear cancer, and even death itself.

When asked what they fear the most, the answers vary: loss of control, loss of identity, “being a burden,” not remembering family, being treated differently, what other people will think.

A societal problem undergirds those fears, and it’s the stigma associated with the disease. Our hyper-cognitive, capacity-reliant  society diminishes the personhood and worth of people with cognitive impairments.

Even the word “dementia” contributes to the stigma. It literally means “loss of mind” and the dictionary lists the following among the synonyms: ”madness,” “insanity,” “derangement,” ”lunacy.”

Dementia is an umbrella term that covers multiple diseases that affect cognitive functioning, with Alzheimer’s disease comprising between sixty to eighty percent. Indeed, changes in the brain contribute to the diseases.

But dementia is more than a brain disease. Dementia is a social-relational disease; and the stigma society attributes to people with cognitive impairment contributes to its destructive consequences.

Stigmatizing people with Alzheimer’s and other forms of dementia may be more damaging than the pathology at work in the brain. Stigma contributes to isolation and diminished sense of self-worth.

There should be no more stigma associated with Alzheimer’s and other forms of dementia than with heart disease, diabetes, or any other disease. As with other diseases, those causing cognitive impairment are no respecter of persons’ class, education, race, prestige, or reputation.

All of us can contribute immeasurably to diminishing the suffering of those with Alzheimer’s and other forms of dementia. We can help remove the stigma!

Whatever our infirmities or frailties, we are ALL beloved children of God with inherent worth and dignity, and worthy of respect, relationships, and belonging.

Communion at Bethany

Yesterday, we celebrated Holy Communion at Bethany, the memory care facility. The mystery of the Sacrament is magnified when celebrated among people with dementia.

Two long-time, non-verbal residents who seldom respond when approached, eagerly received the elements for the first time during the three years I have served as chaplain. The look in their eyes communicated beyond words: “This is the bread of life!”

Being assisted by my neighbor and friend, Dale Sessions, is a special means of grace. Dale is an American Baptist clergy who is in mid-stage of his Alzheimer’s disease. He now lives totally in the present moment and his once extensive vocabulary has been reduced to very few words.

Dale and Communion

Dale’s very presence is a form of ministry; and the cup of salvation being held in his hands is a visible reminder that God’s salvation comes to and through the vulnerable and powerless among us.

When in Doubt, Love!

Wedding photo 2

Saturday, June 30, is our 57th wedding anniversary. It’s a bittersweet, reflective time!

Linda has reached the stage in her disease that she rarely acknowledges my presence. I’m not sure that she now knows who I am. After being married for 57 years, expressions of love and affection go largely unacknowledged.

Several times throughout the day, I stand or sit beside her bed, take her hand, caress her face and hair, and kiss her on the forehead or cheek. I feed her, brush her teeth, watch her sleep.

Often in the quiet of the early morning, I sit in silence beside her bed and wonder: Does it matter to her that I am here? Who am I to her now? What is going on in her mind? Why does my presence sometimes seem to agitate her? Why does she often say “quit” when she is touched?

Those are painful questions for which there are no clear answers. But I have come to this conclusion: When in doubt, love! I don’t always know how best to express that love, whether leaving her alone is sometimes the loving act. But withdrawing love is not an option.

It’s not because I promised 57 years ago that I would love her in “sickness and in health.” I don’t love her out of a sense of duty. Loving her brings joy, meaning, fulfillment to my own life. Neither do I consider her a “burden.” Just her being is a gift! I love her now as she is, as I loved her as the gorgeous and vibrant young woman I married.

There’s a mystery in all this! Linda continues to teach me a lot about life and what it means to love in this broken and confused/confusing world.

Political chaos, corruption in high and low places, mass shootings, normalized hate-filled rhetoric, disrespect for others, cruel separation of migrant children from families, scorn for the poor, widespread racism, arrogant nationalism, . . .! Feels like the nation has lost its mind!

And my own beloved denomination which I have served since my teenage years is tragically divided over homosexuality and threatens to split as we did over slavery in the nineteenth century. To do so, will damage our witness to God’s reconciliation in Jesus Christ and simply mirror the brokenness in our nation. Feels like the church has lost its mission!

I don’t know the best way forward for our nation. Political parties have conflicting agendas and visions. Compromise and the common good are being sacrificed on the altar of personal power and partisan agendas. I know that we as citizens can’t withdraw from the process, even if we feel our vote and advocacy make no differences. Love demands that we stay engaged!

Neither do I know the best way forward for The United Methodist Church. Some caucus groups are drawing lines in the sand and maneuvering politically to win votes, all in the name of faithfulness to truth and doctrine. I realize that whatever is done will be rationalized as devotion to God and our Wesleyan tradition. But I think John Wesley had it right, “All schism is a failure to love!” At least, least us confess our failure to love!

I sometimes feel overwhelmed! Grief and loss are constant companions. So much is beyond my control. My life partner seldom knows me. The future looms ominous. Some problems seem unsolvable. The nation totters. The denomination falters. Doubts arise.

Yet, I am learning from a love honed over more than 57 years this practice: When in doubt, love!

So, I will continue to love Linda even if she doesn’t recognize me or acknowledge my presence.

I will stay engaged on behalf of justice, compassion, and hospitality in our land and love those whose political views are contrary to mine, even if it seems to make no visible difference.

And, I will continue to serve the church whatever institution emerges and whatever forms my service takes, even if I don’t see any results.

After all, love will win! God IS love! The pivotal victory has already been won in the Crucified and Risen Christ.

Amid personal suffering, political corruption and violence, and rigid religious threats, Jesus LOVED and prayed, “Father, forgive them; they know not what they do.”

When in doubt, we will love as Christ loves us!

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