“It is what it is!”

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“It is what it is! I’ve got it. I wish I didn’t have it, but I have to make the most of it!”

Those are the remarks of my neighbor and friend, Dale Sessions, who is in the middle stages of Alzheimer’s disease. He is among my mentors, teaching me about courage, discipleship, and ministry as he approaches his disease with characteristic courage, exuberant humor, and disarming authenticity.

Dale has seen the disease at its worst both as a professional and as a family member.  His ministry has included the pastorate as an American Baptist clergy and the chaplaincy in mental health facilities and addiction treatment centers.  Prior to retiring, he was the chaplain in a long term care facility where he provided pastoral care for elderly veterans, including those with dementia.

Dale is prophetically pastoral and pastorally prophetic.  He envisions a world of justice, compassion, reconciliation, and peace; and he has been an advocate for peace, civil rights, and economic justice. He has facilitated change in systems and individuals by helping others see new possibilities and to believe that change is possible, at both the personal and community levels.  He resists the notion of victimization and helplessness; and with compassion and humor he instills hope that things can change for the better.

His experience with Alzheimer’s has been painfully personal. Both his father and brother died from the disease after years of relentless loss and decline.  Following his father’s death and his brother’s diagnosis, Dale was acutely aware of his own risk. He thought and wrote a lot about the possibilities awaiting him.  But something deep within enabled him to accept the negative prospects, which he faced with “eyes wide open.”

Soon after symptoms began to appear, Dale courageously sought an evaluation.  Immediately upon receiving confirmation of the disease, he volunteered to be part of a clinical trial at Emory with the hope of helping others.  He willingly relinquished his driving privileges and began making plans for his diminished capacities. He and his lovingly supportive wife, Norma, moved into a retirement community.

Alzheimer’s disease is relentlessly stripping away Dale’s exceptional language and cognitive abilities. Once an avid reader and astute analyst of contemporary culture, he can no longer comprehend a simple lunch menu or remember the last news report. Once a gregarious extrovert who lit up every room he entered, Dale’s world and circle of friends have narrowed. Silence is becoming more prevalent than his jolly laughter. The twinkle in his blue eyes is giving way to that recognizable detached glare.

Dale’s dealing with his Alzheimer’s is an example of what Marilynne Robinson calls “prevenient courage.” In Gilead, she writes,

“Theologians talk about a prevenient grace that precedes grace itself and allows us to accept it. I think there must also be a prevenient courage that allows us to be brave – that is, to acknowledge that there is more beauty than our eyes can bear, that precious things have been put into our hands and to do nothing to honor them is to do great harm. And therefore, this courage allows us… to make ourselves useful. It allows us to be generous, which is another way of saying exactly the same thing.” (245-246)

What accounts for Dale’s courage in confronting his disease? What were the experiences which contributed to this “prevenient courage”?  We can assume that those whom Dale served and his experience with his father and brother helped to shape his own response. He saw those whom he served as his friends, teachers, and colleagues in ministry.

Each of us can increase our awareness of and response to those around us who serve as our teachers, preparing us for whatever lies ahead. We can affirm “It is what it is!” with courage because we are held in community. People with dementia, people with mental illness, people struggling with addictions and others whom we might think have little to offer, are part of that community!

I share Dale’s story of courage to emphasize that people with dementia have gifts to share.  They minister by their presence. I wish everyone could have witnessed the power of his presence as he and I shared Communion with residents, staff, and family members at Bethany memory care facility. And, you should have seen the courage and grace in Dale’s tear-filled eyes as he served me Communion!

“It is what it is” and it is GRACE!

[I did an interview with Dale a few months ago when his language skills were more intact. I wanted others to hear Dale’s comments and to witness his courage and discipleship. You can access the eight minute interview on YouTube: https://youtu.be/Sff-fgZ8Des.]

“I Don’t Want to be a Burden”

“I don’t want to be a burden to my family. My kids have their own lives and shouldn’t have to be burdened with me,” said the mother in the early stages of Alzheimer’s disease.

I’ve made the statement myself and heard it from Linda when she was diagnosed with Frontotemperal Dementia.  We moved near our daughters for support in our declining years; but I still struggle with the balance between support and being a burden.

“Being a burden” is high on the list of fears of older adults.  The fear is rooted in the dangerous myths of individualism and self-sufficiency.

Warren Kinghorn, a psychiatrist and theologian at Duke University, lists five societal mistakes harmful to people with dementia. One is the notion,”It’s good not to be a burden (and not to need others).”

“The remarkable thing about human life,” writes Dr. Kinghorn, “is not that humans are frequently a burden to each other, but that bearing each other’s burdens is simply what humans do. It is care and relationship, not isolation and individualism, which are normative to human life.”[i]

We come into the world as dependent creatures and the interdependency only grows more complex and multi-layered as we mature.

Therefore, bearing burdens is integral to being human! I am increasingly convinced that we have an innate need to nurture and care for others.  Bearing burdens is in our DNA! I see it daily in my relationships with residents in the memory care unit.  Many people with dementia are hyper sensitive to feelings as expressed in voice tone and non-verbal communication. Many seem to intuitively know when someone is angry, frustrated, lonely, or not feeling well.

We recently found Linda in another resident’s room. She was bent over the sleeping man, gently stroking his shoulders. She was overheard saying, “I’m sorry. If you’re having a problem, I will get them to help.  It’s okay if you’re just sleeping.  I just want to make sure you’re okay. I love you.” John, about whom she was concerned, is in the severe stage of his disease and tends to be isolated from other residents.  Linda seems to sense his need for support and she has a need to provide support!

This dynamic of bearing burdens and being burdens is rooted in the very nature and mission of God.  God declared to Moses, “I have observed the misery of my people who are in Egypt; I have heard their cry on account of their taskmasters. Indeed, I know their sufferings, and I have come down to deliver them. . .” (Exodus 3:7-8). God is a burden-bearing God.

In Jesus the Christ, God “pitched tent” among us and shouldered our burdens all the way to and through the Cross and sets us free to bear one another’s burdens.

Bearing burdens is part of what it means to the body of Christ: “Bear one another’s burdens, and in this way . . . you fulfill the law of Christ” (Galatians 6:2, NRSV). Bearing one another’s burdens is an opportunity to share in Christ’s self-emptying love.  Furthermore, in bearing one another’s burdens we meet the Risen Christ and grow into his likeness.

Bearing burdens is not a burden when shared in covenant community of love. Burden-sharing is part of the Christian community’s identity and mission.

I often enter the memory care unit feeling weighted down with the burden of loss and grief, assuming that I am there to lift the burdens of those trapped in confusion and vanished memories.  When I take  time to enter the world of those who bear the burden of the disease, be they staff, residents, or family members, a mysterious connection occurs. It may be a faint smile, or sudden sparkle in the eye, or an unexpected hug, or a jolly laugh, or a friendly “hello.”  But in that simple moment of joy, those whom society considers as burdens lift my burdens.

Together we meet the One who extends this invitation: “Come to me, all you that are weary and carry heavy burdens, and I will give you rest. Take my yoke upon you, and learn from me; for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy, and my burden is light” (Matthew 11:28-30 NRSV).

 [i]Warren A.. Kinghorn, “I Am Still With You”: Dementia and the Christian Wayfarer,” Journal of Religion, Spirituality & Aging, 00:1-20, 2015.