Brennan Hurley, a pastor in Taylorville, Illinois, invited me to join him in a conversation about dementia and the church. Brennan does interviews each week with a persons representing different experiences and topics and the conversations are shared with his congregation. I appreciate the opportunity to share my journey with Linda and lessons I have learned,
You may access the 45-minute interview below. Your feedback is welcome.
October 3 marked two years since I, along with daughters Sheri and Sandra and sons-in-law John and Kyle, stood in muted reverence beside Linda’s bed holding her hands as she serenely slipped into that mysterious realm we call “death.”
Though the moment had been anticipated for months, even years, as the losses had been inexorable over a decade, the finality of this moment was emotionally jarring. It set in motion a life-altering process with new challenges and adjustments.
Grief, though universal and unavoidable, defies all our attempts to fully explain or completely control. We confront our losses out of our own reservoir of experiences, values, traits, and relationships. Therefore, I offer no prescriptions for how others should grieve. I can only describe my own journey and hope others might find their own resources.
C.S. Lewis’s image of grief as a bomber flying overhead continues to speak to me. Two years ago, in the aftermath of Linda’s death, the disorienting bombs were dropping relentlessly, shattering every aspect of my being with waves of deep sadness. I didn’t know if I could endure the bombardment of such painful feelings of loss, disorientation, regret, guilt, anger, and loneliness.
Now, two years later, the bomber hovers further in the distance. The bombs fall with less frequency and intensity. Recovery and reorientation come more quickly. The pervasive and penetrating sadness has abated. Preoccupation with the images of disease, decline, suffering, and death are receding as joyful memories of decades of shared love and happiness move to the forefront. Gratitude is overshadowing regrets. Forgiveness is at least softening the pangs of guilt.
I’m learning anew that grief can only be lived through. Attempts to deny it or escape will only delay and exacerbate the consequences. We can get through it and move toward the future with hope. Indeed, love endures!
Marilynne Robinson in her acclaimed novel Gilead 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, as the old men said, to make ourselves useful.
This prevenient courage comes to me in. . .
the encouragement and support of family and friends
tasks to be accomplished
memories mingled with gratitude
the beauty of an approaching autumn
works of art or melodies and words of music
prayers of lament and thanksgiving
sharing the suffering and grief of others
nurturing old friendships and entering new ones
the birth of a great grandchild bearing Linda’s middle name
Anne Lamotte writes, “You lose someone you can’t live without, and your heart will be badly broken, and the bad news is that you never completely get over the loss of your beloved. But this is also the good news. They live forever in your broken heart that doesn’t seal back up. And you come through. It’s like having a broken leg that never heals perfectly–that still hurts when the weather gets cold, but you learn to dance with the limp.”
I never could dance, as Linda often reminded me. But I do walk a lot! The limp you may sometimes detect is prevenient courage enabling me to move toward the future with hope.
The wise and compassionate Don Saliers summed it up in a thoughtful and much appreciated message to me: “This deep rhythm of loss, consolations of grace, and then gratitude for the joy of shared life, it is a great mystery, isn’t it?”
Yes! Mysterium Tremendum! Tremendous Mystery! I call it GOD!
I experienced Pentecost in the most surprising place. It was four years ago, June 4, 2017.
Approximately twenty-five residents in varying stages of Alzheimer’s and other forms of dementia, plus six or eight volunteers, gathered for worship at Bethany, the memory-care facility at the Heritage at Lowman in Chapin, South Carolina.
Below is a slightly revised blog I shared following that service. I share it once more in hopes that we will all experience Pentecost again!
“How do we tell someone who has lost language comprehension that we love her?” I asked the worshippers at Bethany, the memory-care facility where my wife, Linda, was a resident for eighteen months. Beside me stood a resident whose speech has been reduced to incoherent babbling. She looked into my eyes as though longing to speak.
“Hug her,” came a response from a resident who struggles with hallucinations as well as lost and distorted memories. I put my arm around her and she embraced me in return.
Looking into her sad eyes and calling her by name, I said, “I love you!”
Suddenly, the sadness in her eyes turned to a sparkle. With a faint smile, she said plainly for all to hear, “I love you!” Babbling turned to the language of love.
It was Pentecost Sunday! We had been singing such hymns as “O for a Thousand Tongues to Sing,” “Kum bah Yah,”“Surely the Presence of the Lord is in this Place,” and “There’s a Sweet, Sweet Spirit in this Place.”
We heard the story of Pentecost in Acts 2 where people with different languages and cultures and traditions understood one another. “Tongues of fire” descended on diverse and multi-lingual people and God’s Spirit created a new community.
Bethany became a new community as the barriers once again crumbled!
Present among the residents were various religious traditions: American Baptist, Assemblies of God, Southern Baptist, Catholic, Episcopal, Holiness, Lutheran, Presbyterian, United Methodist, and Jewish. A few claim no religious affiliation. Some present in the service have forgotten God and no longer remember who Jesus is. Perhaps a few have never consciously known God.
All share a common characteristic: Alzheimer’s or another form of dementia.They are at various stages in their disease, but all are unable to live alone and care for themselves.
“What made it possible for the people present at that Jewish festival to understand one another even though they spoke different languages?” I asked the worshippers.
“They loved one another,” a resident called out. A conversation followed about how love enables us to understand and accept one another.
Other languages are present at Bethany. One couple speaks Portuguese. One’s native tongue is Spanish and another’s is Italian. A staff member speaks Swahili.A volunteer present for the service knows French and German.
“Let’s learn to say “I love you” in different languages,” I suggested. So, we tried to speak words of love in Portuguese, Spanish, Italian, French, German, and Swahili. With varying degrees of success, we tried to speak love in multiple languages.
It was during those exchanges that the resident whose language skills have been destroyed by her disease came and stood beside me. How do we say “I love you” to someone who can’t speak or understand words?
There followed a time of practicing love without words—hugs, handshakes, an open hand, a pat on the back, a warm smile. Other love languages were mentioned—helping, protecting, encouraging, feeding, bathing, just being with….
They got it! Beneath all our hyper-cognitive theological talk and creedal statements is the simple reality that God is LOVE. To love is to know God! Pentecost happens when people express the multiple languages of love!
The worshippers at Bethany are a microcosm of our world. They are black and white and brown. They are Christian, Jewish, and none of the above. Their behaviors are sometimes offensive and difficult. Intellectual abilities vary broadly. For some, the filters are gone, and they cross boundaries of affection and relationships. Some have been highly skilled professional people. Others have a background of common labor.
They are just like the rest of us! As I listen to the rancor in our society and churches and the talk about the United Methodist Church dividing as a denomination, I pray that we learn and practice the languages of love. One thing that binds us all together: We are God’s beloved children!
Within the embrace and “I love you” from the worshipper at Bethany on Pentecost Sunday was another voice! It was God’s Holy Spirit speaking the language of Greater Love, declaring to us all, “I know you by name. I have redeemed you! You are mine!”
We are surrounded by God’s ever-present love. Sharing that love in simple acts of kindness, compassion, and justice is our highest calling.
Carlen Maddux and I have forged a friendship as the result of our common experiences in caring for our beloved spouses. I am blessed by Carlen’s insights, wisdom, and support. I am honored that he chose to interview me recently and post this article on his website.
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.
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.
It’s been three and half months since Linda’s death. The grieving continues!
C. S. Lewis in his classic A Grief Observed writes that grief is like a bomber flying overhead. At times you are only faintly aware that it is there. Then, without warning it drops a bomb, shattering your world once more. The sobbing and disorientation return.
Those waves of grief come unexpectedly, like a sudden bolt of thunder on a clear day! They are triggered by a site, or fragrance, or a rediscovered memento, a reminder of an experience from the past.
Painful images of Linda’s diseased-induced distress, anguish, confusion, disorientation, and fear open the floodgates of grief’s tears. They trouble me, sometimes torment me!
Experts remind us that the memories with the most painful emotion attached to them are the hardest to heal.
Those negative images accompanying our journey with dementia are difficult to dislodge from my memory.
But healing is happening!
Our daughter created a collage of photographs of happy times over our sixty years together.
The collection of joyful images sits in my sunroom where I spend much of the day. Other photos are attached to the refrigerator. Two months ago, those photos brought tears, too. They reminded me of what had been but can be no more.
Yet, something important has been happening.
The painful images from the last few years are slowly being balanced by memories from six decades of love and laughter.
Our new community chaplain, Kathleen Miko, stopped by this week for a visit. Since she had not known Linda, I pointed to the collection of photographs and explained why they were there.
Kathleen observed, “I notice that you smile every time you look at those photos.”
I hadn’t realized that gradually grief’s tears are being replaced with smiles of gratitude for love shared.
I know that more bombs of sadness will fall, waves of grief will come crashing over me.
Yet, grief’s tears are slowly giving way to love’s smiles.
December 5 was the concluding session of “Dementia through a Pastoral Lens” which I teach at Lutheran Theological Southern Seminary. It was an eventful and poignant time as students shared evaluations and insights from their fourteen weeks of academic challenges and personal engagement with people living with dementia.
I asked, “Name an insight or formational experience you will take from this course.” Among the responses are the following:
We can’t think our way to God; God comes to us in experiences of love.
“I became more patient.” Discipleship requires slowing down, being fully present in the moment.
Ministry means presence more than doing. We aren’t problem solvers; we are mediators of grace.
People with dementia are full members of the church and not mere objects of charitable ministry. They are no less faithful disciples than we are.
Human identity and worth do not lie in capacities, intellectual or otherwise, but God’s claim upon us and our relationships in community.
People lose their memories only if they lose community, for memory is held in community, not simply in our brains.
The presence of the weak and vulnerable are essential for the church to be the body of Christ and faithful to its nature and mission.
The vulnerable belong at the center of the church’s life and mission and not on the margins. Jesus shifted the margins with the outsiders becoming the insiders.
Baptismal vows to support and nurture one another have no expiration date. The covenant extends into our frail years!
Theology is lived more than thought.
People with dementia teach us more than we teach or serve them.
To love and be loved is to know God, whether we can cognitively comprehend or verbally articulate thoughts about God.
During a “commissioning”the students assumed the following vows:
Will you be intentional in ministering with people affected by dementia, especially those with the disease, their loved ones, and those who care for them?
I will, with God’s help
Will you be present with people with dementia, learn their stories, receive their gifts, and enter their worlds?
With God’s help, I will seek to be an extension of the Incarnation
Will you relate to each person with dementia as a unique, precious child of God, made in the divine image, whose personhood and worth are in their identity in Christ?
By God’s grace, I will relate to each person with dignity, respect, and love as a brother or sister in Christ.
Will you honor the persons with dementia as fellow disciples and nurture their ministries with support, guidance, and access to the means of grace, including the Sacraments?
With the guidance and presence of the Holy Spirit, I will honor them as colleagues in Christ’s ministry and among the priesthood of all believers.
Will you seek to form congregations in which people with dementia and their families truly belong as equal participants and members of the body of Christ? With God’s help, I will seek to order the life of the congregation to be the body of Christ, reflecting the unconditional love of Christ for ALL people.
The students received special stoles provided by Lynda Everman and Don Wendorf who have developed the marvelous “stole ministry” as outlined in the book, Stolen Memories.
This book can be ordered on Amazon; 100% of sales support the work of the network, ClergyAgainstAlzheimer’s (order here).
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!
A week has passed since Linda’s death and I have begun the process of adjusting to the new norm without her physical presence. Though the house is vacant and quiet, the reality of the love we shared for sixty years remains.
One of the most comforting and profound experiences of the last week has been a poem written by our daughter, Sheri, which she shared at both of Linda’s memorial services. I learned that she wrote the poem over the ten years of Linda’s disease and that she would write a new stanza every time her mom entered a new phase of dementia.
Each stanza represents a stage in the long journey and chronicles the progression of the losses experienced, including the present reality of her absence and our anticipation of resting in the loving arms of God in whose presence Linda now lives.
I share the poem with Sheri’s permission.
Glimpses, mere glimpses I see
Of a future reality that will come to be.
A lost word, a confused look,
An expression I mistook.
Glimpses, mere glimpses I see
Of the mom who still knows and loves me.
Embarrassed by her lapse and my forgotten name,
I brush it aside because I love her all the same.
Glimpses, mere glimpses I see
Of the mom she used to be.
A smile, a giggle, a twinkling of the eye
Remind me of a taken-for-granted time now gone by.
Glimpses, mere glimpses I see
Of my mom slipping away from me.
I try and try to connect once again
To little avail, though; this is how it’s been.
Glimpses, mere glimpses I see
Of where my mom will one day be.
In the arms of the God who loves her so much,
In the arms of the God she did always trust.
Glimpses, mere glimpses I see
Of my mom happy, as she is meant to be
Cradled in love and joy and peace
After all these years, she is finally free.
Glimpses, mere glimpses I see
Of a world without my mom physically
Close in my heart she will always be
Until that very day God cradles me.
I strong affirmly and testify to the lessons identified by Dr. Daniel Potts. Dr. Potts is a neurologist and a strong advocate on behalf of persons with living with dementia and their care partners. I am honored that he wrote a strong endorsement of Ministry with the Forgotten: Dementia through a Spiritual Lens.
The following are lessons that I have learned as a neurologist and care partner, both from my father, and from others who are living with dementia and their care partners. These were first compiled for a webinar for the Dementia Alliance International. I am thankful for opportunities to be in relationships with those who are living with dementia.
1. Care partners are curators of another person’s museum of life.
2. The innate value and dignity of human beings cannot be stolen by any condition or circumstance. To care with compassion, we must first believe that all people retain an incontrovertible identity.
3. The beauty, vitality and relational energies inside the very one living with dementia can provide the inspiration for the care partner’s journey.
4. We should love and honor persons in their current state, rather than holding them accountable to be what our egos need them to be. 5…