Tag Archives: Alzheimer’s

Uncounted Victims of COVID-19

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COVID-19 casualties, counted and uncounted, are mushrooming and getting closer to home!

Our family had a scare last week. Sandra, my daughter, is a social worker in a skilled nursing facility. She was exposed to the virus and developed familiar symptoms. We all anxiously waited three days for the test results. Fortunately, she tested NEGATIVE.

Among the many uncounted casualties are those who live and work in nursing homes like the one where Sandra serves and the one across the street from me.

Sandra eagerly returned to work Monday. She loves her work, her colleagues, the residents and their families.

Lowman across street

I live on the campus of a beautiful continuous care retirement community. Across the street is the nursing facility, where approximately 140 residents are cared for by a dedicated team of caring staff members.

I see family members come to the windows of their loved ones and press their hands against the pane. I watch as staff members arrive for their long shifts and leave exhausted. I hear the sirens of emergency vehicles arriving and realize someone is in crisis.

But this is only a microcosm of the realities in the approximately 15,000 nursing homes in the United States where  1.4 million people are cared for by approximately 1,663,000 employees.

Only a small percentage of the residents in nursing homes have the COVID-19 virus. However, many residents are showing increasing signs of depression and failure to thrive as the result of isolation from loved ones.

Family members are growing increasingly stressed and frustrated by the imposed guidelines and policies.

I wonder if the confusion and agitation of those with Alzheimer’s and other forms of dementia is intensifying.

Family members of those nearing death plead to be permitted to keep vigil beside the bed of their spouse and/or parent. Thousands are dying with only the staff present to comfort them. I can only imagine the added pain of family members as they now grieve without having had the opportunity to hold their loved one’s hand and whisper “I love you” as a final goodbye.

The medical staff, social workers, and administrators are caught between regulatory guidelines and policies and the relational needs of residents and families. They are taking on added responsibilities way outside their job descriptions: administrators substituting as beauticians and CNAs; social workers becoming conflict mediators and surrogate family members; chaplains sweeping floors and delivering meals; housekeepers assisting with bathing and feeding.

I would like to help. My ability to respond is limited. After all, I’m in the vulnerable age group myself. But I’ve decided that I can do something:

  • I can wear my mask and observe the CDC guidelines so that I don’t add to the workload of healthcare workers, or spread the disease to others.
  • I can pray each day for the staff and residents and the family members, and I now consider each siren a call to prayer.
  • I can walk past the windows with my dog, Millie, and wave at the persons inside.
  • I can speak and write words of appreciation to the staff and not complain if I am inconvenienced by their preoccupation with their added workload.
  • I can communicate with legislators for more attention and resources for the frail elderly, including nursing homes.
  • I can call and/or write to family members I know who are caring for frail persons.
  • I can plant and cultivate flowers in my own lawn that are visible to the residents and staff, providing some glimmer of beauty.
  • I can make an added contribution to agencies that advocate and serve the frail elderly.
  • I can work for systemic changes in attitudes toward and treatment of the elderly, especially the most frail.

And, we all can “love our neighbor as ourselves,” including our neighbors who live and work in nursing homes and their families. They, too, are victims of COVID-19.

 

 

 

 

 

Walk to End Alzheimer’s

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Today I joined approximately two thousand people in Columbia, South Carolina, on the Walk to End Alzheimer’s. I was accompanied by daughters, Sheri and Sandra, and grandchildren, Emily and Michael.

The organizers asked me to speak on behalf of those who have lost a loved one to Alzheimer’s or other forms of dementia.

Our daughter taped the speech which you can access at the end of this post:

Below is what I said:

Ten years ago, my wife and I sat in the doctor’s office at Duke University Medical Center awaiting the results of their evaluation of Linda’s cognitive functioning. Then came the dreaded news: Dementia, Frontotemperal Dementia.

On that cold, rainy November day, we embarked on a treacherous journey. Every aspect of our lives changed as we adapted to the realty of perpetual loss and relentless grieving. I retired from a treasured faculty position. We moved to SC to be near our daughters and their families. Everything changed—finances, relationships, activities, abilities.

But one reality remained constant: LOVE!

Three weeks ago, October 3, Linda’s struggle ended. She died peacefully in our home. Though I am grateful that her long struggle with the terrible disease has ended and she is at peace, I miss her presence terribly. After 58 years of marriage, I am now adjusting to the new reality of her absence. Yet, I will never be without her, since we are never totally separated from those with whom our lives are intertwined in the bond of covenantal love.

Her spirit will be with me every step of this walk!

I am walking today to — 

  • remove the stigma of Alzheimer’s and other forms of dementia
  • assure those with dementia: “You are not forgotten. Though you may forget, we will remember.”
  • affirm that we are more than our brains or capacities: we have inherent worth and dignity
  • declare to caregivers: “You are valued! You are not alone! We are in this together!”
  • advocate for governmental support for research, treatment, and financial support for the healthcare crisis Alzheimer’s represents
  • commit to do all I can to end Alzheimer’s and other forms of dementia so that my daughters and grandchildren will not fear that they will have to endure these dreaded diseases.

So, let us walk together, work together, grieve together, and GIVE TOGETHER so that together we can END ALZHEIMER’S!

 

He Hasn’t Stopped Ministering!

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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.

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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!

 

 

 

 

An Unexpected Communion

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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!

 

 

Let’s Remove Stigma from Dementia

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 ” 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.

Healing Scars

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The older I get the more scars I have! Scars from multiple medical procedures add to those lingering from childhood scrapes. Some are more visible and pronounced than others. The scar on my chest from by-pass surgery reminds me that there is also an unseen scar on the heart itself.

Then, there are the less visible scars resulting from wounds to the psyche. Those blemishes lurk inside and surface in our behaviors and moods. Anger, guilt, grief, even violence often are outward signs of hidden scars.

To be human is to be scarred! Our scars tell our stories. Each mark reveals an event. Frequently, the story is one of loss and grief. A cancerous growth removed. Surgery to repair a diseased organ or fractured bone. An accident or fall. Maybe a battle wound, an act of violence.

The Apostle Thomas fixated on Jesus’s scars/wounds. Unless the wounds were visible, he could not believe the resurrection. Apart from Jesus’ scars, we miss a central meaning of the crucifixion and resurrection.

The  visible wounds represent more than empirical evidence that Jesus was raised from the dead.

The request to see the “mark of the nails” expresses Thomas’ profound theological longing. He wants assurance that the Resurrected Christ is the Crucified Jesus.

No phantom Jesus who only pretended to suffer can be the Savior! Only a wounded and scarred Jesus can save a blemished and scarred humanity!

Jesus’ scars declare the profound message that God is in solidarity with humanity’s wounds. Our wounds are seen, understood, accepted, and healed! God takes on our wounds and redeems them!

“By his stripes (scars) we are healed” (Isaiah 53:5). Jesus’ scars tell the story of forgiveness, reconciliation, love, justice, hospitality, and peace.

Scars themselves indicate healing. The open wound has closed, the malignant cells removed, the broken bone mended, the diseased organ healed.

Jesus’ scars proclaim:

  • Our wounds are shared, understood, accepted, healed
  • Forgiveness heals vengeance
  • Love cures hate
  • Integrity counters political and religious expediency
  • Justice prevails over exploitation and oppression
  • Courage triumphs over apathy and conformity
  • Hospitality rectifies exclusion
  • Peace reigns over war and violence.

My friend, Dale Sessions, assists with worship at Bethany, the memory care facility at the Heritage at Lowman. He bears two clearly visible scars on his head.Dale outside

Dale was diagnosed with Alzheimer’s disease in 2010. Both his father and his brother died of the dreaded disease.

Wanting to contribute to research, Dale voluntarily entered a trial program at Emory University. Two holes were drilled into his skull, leaving sizable scars.

When we serve Communion together, Dale holds the cup. As he bends toward each seated participant, his scars are plainly visible. Those scars have come to symbolize his courage in the pursuit a cure for Alzheimer’s . But they also are visible signs of self-giving love on behalf of others, a fitting reminder of the Sacrament itself.

Dale at Bethany

Another friend’s face is badly scarred from a wound inflicted by racists in the 1960s. He put his body on the line on behalf of racial and economic justice. Some might refer to his scarred face as “ugly.” To the contrary, the scar beautifully tells the story of courage on behalf of compassion, justice, and inclusion.

I’m glad Thomas asked to see Jesus’ wounds/scars. Those scars testify to compassion, forgiveness, reconciliation, justice, hospitality, and peace–SALVATION!

Perhaps Jesus asks to see our scars of healing in this wounded and flawed world!

 

“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.]