That Which Endures

A friend whose wife died from Alzheimer’s disease said, “Living with dementia is like having a perpetual funeral.  Every day brings another loss until nothing remains but grief.”

I can relate to the feeling! Dementia diseases gradually strip away memories, ideas, decisions, mobility, initiative, bodily control, recognition of family and friends, and finally breath itself. Each loss triggers grief and the one you miss is sitting beside you. We lose them a brain cell at a time!

Of course, it isn’t just dementia that strips life from us. Everything passes away—our looks, our intellect, our abilities, our energy, our mobility, our health, our independence, our cherished relationships, our productivity, and finally life itself.

Is there anything that survives through all the losses? Is there a constant which holds us together amid perpetual change, persistent loss, and death’s finality? Or is grief all we have left?

Living and working among people with dementia has confirmed for me that one reality not only endures but actually thrives amid loss of cognitive and physical functioning. Dementia erases memories, strips away knowledge, garbles or mutes language, diminishes abilities, narrows relationships.

But this remains:     L    O    V    E          hands_11.4.2017

The Apostle Paul declared it more than twenty centuries ago: “Love never ends. But as for prophecies, they will come to an end; as for tongues, they will cease; as for knowledge, it will come to an end”(1Corinthians 13:8).

Love is not sentimentalism or warm fuzzy feelings.  It is entering the messiness, anguish, resistance, and hostility of the beloved with a non-anxious, gentle presence. It is action on behalf of the wellbeing of the other. Love is radical acceptance when behaviors feel unacceptable; compassion without expectations; continuing to care when the caring is not returned.

The expressions of love change, but the reality endures. I have known scores of people with one or more of the dementia diseases. I have yet to meet one who did not respond to being loved, even those in a comatose state. And even when the ability to express love is gone, love is generated with those who enter the person’s story.

Linda no longer comprehends the word “love.” Yet, she expresses and responds to love! Language now fails her; but gentle touch, brushing her hair, a smile assures her of value and worth. She can no longer feed herself, so slowly placing food in her mouth becomes a sacrament of love. Mobility is gone! Turning her in the bed or smoothly transporting her to a recliner become means of bearing her in the arms of compassion.

She no longer has control of bodily functions. Washing her and keeping her clean is an exercise in love’s humility and servanthood.  Her filters are gone and emotional control is lost. Being with her, absorbing her anger and frustration with non-anxious presence enfolds her in unconditional love.

The love is reciprocal. Linda’s expressions of love are rarely verbal. Occasionally, she will say “thank you” to a service rendered.  But her more typical expressions of love are these: a fleeting smile, reach for my hand, raising of an eyebrow, look of recognition in her eyes, calling my name or that of our daughters, growing calm with a caress of her face.

Love endures because love is God! The Scriptures clearly declare: “Beloved, let us love one another, because love is from God; everyone who loves is born of God and knows God. Whoever does not love does not know God, for God is love.” (1 John 4:7).

Love is that which is ultimate and the most permanent reality in the universe! Everything else may pass away. LOVE is as permanent as God for God is Love!

“Why Don’t You Get on with Your Life?”

“Why don’t you get on with your life?”That was the question raised to a friend whose wife is in a memory care facility.

For six years, he has visited her daily between 1:00 and 3:00 p.m. Since the disease has taken her language, he mostly sits silently beside her, gently holding her hand. She responds with an occasional smile or a momentary twinkle in her eyes.

The casual observer assumes that she no longer knows her husband, rendering his visits meaningless. As I often hear from medical staff, family members, and friends, “They aren’t there anymore. She/he is already gone.”

If they are already gone, why continue to invest time and energy in relating to them?  Or as one daughter said about not visiting her mother, “She’s not the mother I’ve known. I want to remember her as she was.”

A pastor remarked, “They don’t recognize me when I visit or remember that I’ve been there. I have so many other things to do. They aren’t really there, so what purpose does a visit serve?”

Pat Robertson suggested in response to a caller on his television program that a husband can justifiably divorce his wife with dementia. His reasoning:  “. . . I hate Alzheimer’s. It is one of the most awful things because here is a loved one—this is the woman or man that you have loved for 20, 30, 40 years. And suddenly that person is gone. They’re gone. They are gone.“

Since the person with Alzheimer’s is “gone,” it seems permissible that “you get on with your life!”

The advice may be well intended.  Neurocognitive diseases do change people, stripping from them capacities to remember, communicate, and reason.  Personality changes are real and often dramatic. Difficult behaviors emerge.  Reciprocity vanishes or diminishes. Dependency escalates with ever-weighty demands on spouses and family.

Caregiving can be all consuming, with devastating physical and emotional consequences for the spouse.  Relentless grieving and pervasive sadness take their toll. Therefore, there is some value in suggesting that “you get on with your life.”

The advice, however, is based on a devastating myth:  Identity and worth lie in our capacity to think clearly, remember rightly, communicate plainly, and behave appropriately. It is the popular acceptance of Descartes’ dictum, “I think, therefore, I am.”

My friend responded succinctly and firmly to the suggestion that he get a life. He said simply, “This is my life!” He added that he enjoys spending time with his wife. Love is central to who he is. She may not always cognitively know him, but he knows who she has been and who she IS; and he loves her for all she has been AND for all she is! Love gives life, joy, connection to both!

Those of us who refuse to live by the myth know something very important: THEY ARE STILL THERE!  We are more than our thoughts or capacities or behaviors. We are distinct, beloved children of God, whose worth and identity are held permanently by God!

Those who take the time and energy to be attentive, to get inside the world of loved ones, to listen to the feelings behind the incoherent language, to really BE PRESENT know the person is still there!

Sometimes we see it in a faint twinkle in the eyes, or a characteristic gesture, or a fleeting smile, or a slight squeeze of the hand. When it happens, there emerges a profound joy which may last only a moment.  But the joy is real for both, and the residual effects endure longer than can be measured.

On the rare days when my friend does not arrive at the memory care facility at 1:00, his wife can be seen standing at the window looking out toward the parking lot. Mysteriously and inexplicably, she knows it’s time for her husband to come. She is STILL THERE! And he knows it!

Following a Forgotten Jesus

IMG_20160623_111041354“We’re going to talk about Jesus,” I said to a resident at Bethany as I was rounding up people for Bible study. Her quizzical stare indicated that she didn’t understand the invitation.

I tried again, “Come with me. We’re going to tell stories of Jesus.“ The puzzled gaze intensified, signifying growing agitation with my persistence.  She retorted, “I don’t know what you are talking about! I don’t know any Jesus!”

Many residents in the memory care unit have forgotten Jesus. My wife, a trained Christian educator, who has spent her life in the church, doesn’t remember who Jesus is. Few if any of the residents can comprehend and verbalize basic tenets about Jesus—Son of God,  Lord and Savior, Incarnate Word, etc.

Can one who has forgotten or never consciously knew Jesus follow him? Can people with severe cognitive impairment be Jesus’ disciples?

If salvation requires intellectual and verbal acceptance of Jesus, where does that leave those who cannot comprehend or express who Jesus is?

We are all on a continuum when it comes to intellectual understanding and verbal skills. At what point are intellectual belief and verbal accent no longer prerequisites for following Jesus? Insisting on rational belief in and verbal confession of prescribed doctrinal propositions and creedal formulas eliminates the participants in my congregation at Bethany, including my wife.

But the residents are teaching me what it means to know and follow Jesus on a level deeper than the intellect and beyond words. They know Jesus even if they can’t remember his name or recite things about him.

My wife, Linda, only occasionally knows my name and remembers little of our fifty-five years of marriage. She doesn’t know me as her husband or the father of our daughters. Still, she knows me! She loves me!

I sat quietly holding Linda’s hand. With a confused stare she asked, “Who are you?”  I replied, “I’m Kenneth, your husband.” The puzzled look intensified. “Kenneth? Who’s that?” she responded.

I interrupted the subsequent silence with an occasional “I love you!” She made no response. After a few minutes she said with tenderness and a twinkle in her eyes, “I have a wonderful man.”

“That’s great,” I remarked. “What’s his name?” was my follow up question. Bewilderment reappeared. She had no answer. “Is his name Kenneth?” I asked. “I don’t know. I can’t remember,” she said sorrowfully.

The one she experienced as a beloved person was holding her hand! Yet, she didn’t know my name or remember any facts about me or our life together. I knew, however, that she was expressing love for her forgotten husband!

Phillips Brooks and Helen Keller were friends. Several stories exist about their friendship. One incident has been shared in various versions. It seems that the eloquent preacher once described to the young Helen who Jesus is. As she “listened’ by placing her fingers on his lips, she became increasingly excited as the story of Jesus unfolded. Finally, she responded, “I knew him! I knew him! I didn’t know his name!”

In our hyper-cognitive and word-saturated world, we need to be reminded that God isn’t confined within the margins of our thoughts and language. Our intellectual formulations and affirmations about Jesus are important. Knowledge of the Jesus of the Gospels and the Creeds is significant. And verbal witness is part of Christian discipleship.

But those who have forgotten Jesus (or perhaps never cognitively knew him) can still love and follow Jesus!

Jesus shifted the margins when he declared, “Not everyone who says to me ‘Lord, Lord’ will enter the kingdom; but the one who does the will of my Father in heaven” (Matthew 7:21).

The woman who protested, “I don’t know any Jesus,” attended the Bible study session. As I was sharing the story of Jesus healing the woman bent over (Luke 13:10-17), the resident who had forgotten Jesus spontaneously began to sing, “Jesus Loves Me.”  She may have forgotten Jesus, but Jesus hasn’t forgotten her! And, she follows and loves a Jesus her mind no longer grasps!



Shifting the Margins

Throughout my more than half century of ordained ministry, I have felt called to ministry and presence among “the marginalized.” The imprisoned, the poor, and the hidden people in our communities have been critical to my life and ministry as a pastor, bishop, and seminary professor.

A significant shift in my scope of ministry took place six years ago. My wife and partner in ministry, Linda, was diagnosed with Frontotemperal Dementia, one of the neuro-cognitive disorders that fall under the umbrella we regrettably label dementia!

Since that dismal rainy day in November 2009 when we first heard the dreaded word dementia, my world and vocation have shifted. Losses have multiplied and the boundaries of engagement have significantly narrowed. I moved from bishop and professor to caregiver! Rather than the “world is my parish,” my family became my world!

The global became very local! Major concerns dominating the denomination and academia receded to the margins of my preoccupation. My daily relationships shifted from the hyper-cognitive and hyper-productive to the cognitively impaired and productively diminished! Life became a series of losses, a receding circle of relationships, and a restricted sphere of engagements and influence.

But being with people who live within the margins of the present moment, whose abstract thinking has disappeared, whose language is garbled, and who may not know their own names shifts the margins of one’s thinking about God, about life, about the church and its mission, about what really matters.

The motivation and name chosen for this blog is inspired by John Swinton, one of today’s premiere pastoral theologians. His book, Dementia: Living in the Memories of God, has reframed the way I view the margins and those affected by dementia. His book has become a theological companion as I accompany my beloved Linda on our mutual journey.  He provides a theological alternative to the dominant medical lens which views people with dementia in terms of their symptoms rather than their stories! And, he also helped me redefine the meaning of “marginalized.”

Swinton’s work reaches far beyond issues related to neuro-cognitive disorders. His theological perspective emerges from his experiences as a psychiatric nurse, hospital chaplain, and renowned academic scholar. He does theology through the lens of those whom society pushes to the margins but whom God claims as prime recipients and means of Divine Grace. Swinton writes:

 It is certainly the case that Jesus sat with the marginalized and it is also true that he offered them friendship, acceptance and a valued place within his coming Kingdom. However, it is not quite the case that Jesus sat with the marginalized. He certainly sat with those whom religious society had excluded and rejected as unclean and unworthy of attention. However, in sitting with such people, Jesus, who was and is God, actually shifted the margins. By shifting the margins with the pushed aside at the center, the religious authorities became the marginalized! They didn’t realize that Jesus had moved the margins to a totally different place.[i]

Where God is preferentially present becomes the center of reality! The Bible clearly declares that God chooses the most vulnerable—“the least of these”—as special recipients and means of grace! Indeed, Jesus so closely identifies with the poor, the sick, and the imprisoned that what is done to them is done to him (Matthew 25:31-46).

Could it be that those of us who separate ourselves from the most vulnerable and despised are the marginalized and  away from the center of God’s present and coming reign of justice, compassion, generosity, and joy? I know that Linda and the residents in the memory care facility where she now lives are pushing me to shift the margins of my thinking and living!

My daughters and a few friends have encouraged me to share some of my reflections as Linda and I continue “our long goodbye.” I do so somewhat reluctantly, for I do not wish to be presumptuous or in any way unfairly exploit our personal journey. I share in the hope that we all will be open to how God in Christ shifts the margins!

Ponder these additional words from John Swinton:

. . . God was with a totally different group of people doing something quite different: offering friendship and acceptance and revealing the Kingdom in and through that friendship. Jesus offered no “technique” or “expertise.” He simply gifted time, presence, space, patience and friendship. He befriended the tax collectors and sinners; he befriended the prostitute, the stranger and the stigmatised. He offered relational space and time to people for whom the world (and religion) had no time. In and through his friendships, he gave people back their names. Indeed, he gave them new names: “I no longer call you servants; now I call you friends.”[ii]

[i] John W. Swinton, “Doing Small Things with Extraordinary Love: Congregational Care of People Experiencing Mental Health Problems”, ABC Religion and Ethics, October 2014.

[ii] Ibid.