He Hasn’t Stopped Ministering!

It was one of those times. Linda was experiencing inexplicable distress. I couldn’t reach inside her world and calm her restlessness.

Our neighbors and friends, Dale and Norma Sessions, stopped by as they do almost daily. Dale is in middle stage Alzheimer’s disease.

He has lost most of his once extensive vocabulary. He lives entirely in the present moment and his retention fades almost instantly.

IMG_20190520_121050797 (3)

Suddenly Dale went to Linda’s bedside. He touched her on the shoulder and softly said, “You’re good! Yes, you’re good.”

She clasped his outstretched finger and held on tightly!

Though Linda’s distress continued, Norma and I sensed the preciousness of the moment.

Here a person with significant cognitive degeneration had empathy for another with severe impairment. Dale reached for Linda and spoke a word of affirmation, “You’re good!”

I don’t know what either Dale or Linda were thinking. But in that fleeting moment, there was a tender connection, a simple affirmation, an experience of solidarity, a shared compassion.

Dale’s embedded pastoral sensitivities and practices remain. He greets almost everyone with a smile and “Hey! Hey! Hey!” and “You’re good!”

Yes, people with dementia have gifts! They are more than objects of ministry! They minister!

 

 

 

 

We Are Stewards of One Another’s Memories

The loss of memory is one of the most dreaded symptoms of Alzheimer’s and other forms of dementia. My wife, Linda, has lost the memories of our almost 58 years of marriage. It’s a tragic loss!

Recently, I was privileged to spend time at Jubilation, a gathering of older adults in my home conference, Holston. The theme for the event was “More Than Our Memories,” as we dealt with the challenges and opportunities of dementia.

I was reminded of how much of our identities and memories are held in community. Some people present shared memories of Linda and me that neither she nor I recall.

People lose their memories only if the community no longer remembers! We are stewards of one another’s memories!

As John Swinton reminds us, “The tragedy is not that people with dementia forget; the tragedy is that they are forgotten!”

Book on Its Way!

PrintThis week I sent the final draft of manuscript, Ministry with the Forgotten: Dementia through a Spiritual Lens, to Abingdon for the their review and editing. The book is the outgrowth of the journey Linda and I have been on for more than ten years.

Dementia is seen in our society almost exclusively through a medical lens where the focus is on symptoms, lost capacities, and grief. Such a narrow lens contributes to the current fear, stigmatizing, and marginalizing of people with dementia.

The book seeks to broaden the lens by locating dementia within God’s Story of creation, liberation, restoration, incarnation, and salvation. We are all more than our limitations, capacities, and losses. We are beloved children of God, created in the divine image, redeemed by God’s grace, and incorporated into a new community.

I am honored that the Foreword is written by Warren Kinghorn,  a psychiatrist and theologian, who teaches in both the Medical School and Divinity School at Duke. His short Foreword is worth more than the book itself!

The book should be available by August. The royalties from its sale will go to support ministries with people with Alzheimer’s and other forms of dementia and those who care for them.

I Won’t be Attending General Conference But . . . .

UM-General-Conference1920x485-1024x259I’m going to miss an important event in Methodist history–the called session of the General Conference in St. Louis, February 23-27.

A lot is at stake as delegates wrestle with ways to deal with the important matters of homosexuality and the interpretation of Scripture. The decisions made will chart the denomination’s future for decades.

Missing the conference makes me sad! I feel some guilt for my absence.  Although as a retired bishop I have no official duties,  I do feel responsible to be present in support of colleagues and delegates.

I know from previous General Conferences that significant things happen apart from the formal sessions. Old friendships are renewed and new ones formed. The vast diversity of the denomination is on full display.

Great music! Outstanding preaching! Challenging speeches! Profound worship!

I’ll miss all of that!

I must forego the experience. But, I’ll be pursuing my current primary vocational calling, care-partner for my wife of 57 years.

What I will be doing seems small and insignificant when compared to the history-making decisions. Nothing I will be doing will get publicity or make the history books.

I’ll be doing little things–holding Linda’s hand, combing her hair, feeding her, brushing her teeth, assuring her she isn’t alone, just sitting quietly as she sleeps.

There are important connections between what I’ll be doing and what’s happening in St. Louis.

We both will be doing sacred work!  Both will involve strong emotions, including grief and disappointment. God will be present with us!

Both have to do with what it means to love! Who to love! How to love! What it means to love faithfully, as Christ loves us!

Love isn’t an abstraction for me. She’s lying in the bed nearby, with her hand in mine. Love, in the final analysis, is an embodied practice rather than a pontifical pronouncement.

I hope love isn’t an abstraction in St. Louis. May it be embodied in

  • ears that listen attentively,
  • tongues that speak tenderly and truthfully,
  • hands that clasp and serve joyfully,
  • arms that embrace hospitably,
  • hearts that beat compassionately,
  • minds that exhibit the mind that was in Christ Jesus,
  • actions that manifest the breadth of God’s love and justice.

I won’t be trying to convince Linda that she is wrong, or less than, or inadequate, or sinful, or outside the norm.

Instead, I will be trying to empathetically enter her world, see the world as she is seeing it, assure her that she is valued amid her confusion, and loved unconditionally by God and by me.

I genuinely pray that what happens in St. Louis will be akin to what will be happening in our home, and in the countless homes across our world as people seek to love one another as Christ loves us, regardless of

  • race,
  • ethnicity,
  • political affiliations,
  • theological perspectives,
  • sexual orientation, or
  • physical and intellectual capacities.

I won’t be physically present in St. Louis, but I’ll be watching and praying. . . . and continuing to love!

 

 

 

“What do you fear most about growing old?”

“What do you fear most about growing old?” This was a question for breakout groups after a presentation on “Living with Purpose and Joy at Any Age.”

Among the most frequent answers to such a question are “losing my mind,” “not being able to do for myself,” “being a burden,” “running out of money,” “becoming frail and incompetent,” and “having to go to a nursing home.”

This response especially caught my attention: “I fear being taken care of by people who don’t love me.”

Being one of the elderly myself and having spent a lot of time in recent years among frail, infirm, and dependent people, I have an inkling from whence that fear arises. And, regrettably, the fear has legitimacy.

Care of the elderly has become a major commercial enterprise where efficiency, financial profitability, and getting past the next regulatory inspection are the operational priorities.

Most care facilities in the United States operate on a medical model in which people are treated for their physical and mental frailties. Residents (patients) are categorized by their symptoms and levels of incapacitation.

The frail elderly are treated as dependent recipients of medical care dispensed largely by over-worked, minimally trained, under paid, and seldom affirmed employees.

What if the paradigm for care of the elderly were shifted from dispensing medicine to sharing love and extending hospitality, countering the fear of “being cared for by people don’t love me”?

Such a shift would require honoring the dignity, worth, and uniqueness of each person as a beloved child of God, regardless of his/her capacities.

Being cared for by people who love me means:

  • being present with and attentive to me
  • knowing my likes and dislikes, my longings and regretsClasping hands 2
  • listening to my stories, even if I tell them over and over
  • talking to me tenderly and sensitively
  • treating me as a beloved member of the family
  • letting me share my gifts as well as accept yours
  • being excited to see me when we’ve be apart
  • smiling as though you enjoy who I am
  • advocating for me when I can’t speak for myself
  • being patient with me when I can’t understand clearly or do quickly
  • getting inside and understanding my world
  • remembering that I was once younger like you and you one day will  be old like me
  • knowing that the best medicine you can give me is your love

While being cared for by people who love us may be especially urgent for the frail elderly, everyone of whatever age or station wants such treatment–children in schools, inmates in prisons, patients in hospitals, employees in businesses, students in universities,  members in congregations, families in homes.

I suspect that our fear of growing old and frail would be greatly diminished if we knew that we would be cared for by people who love us. After all, “There is no fear in love for perfect love casts out fear” (1John 4:18).

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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