An Enjoyable Interview
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.
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!
One of my previous blogs consisted of reflections on entering my eighties. The dominating theme was that time is running out for me. Capacities and experiences are diminishing rather than expanding. More family members and close friends are dying than are being born. I am more focused on endings than beginnings.
Then on March 20, my granddaughter, Katelyn Nash Aiken, gave birth to Vera Faye! Suddenly, life expanded rather than contracted. Coincidently, she was born on the first day of Spring as the earth was bursting with new life and beauty.
One look into Vera Faye’s beautiful, innocent eyes, and my heart leapt with joy. Here was pure, spontaneous love connecting across generations. It was a holy moment!
Her sparkling eyes and spirited smile brought instant joy. I felt the sanctity of pure love and the hope of new beginnings.
Such is the rhythm of creation. Such is the cycle of life. Birth and old age are part of the same tapestry of life. Being born and dying are built into the structure of everything, human and nonhuman.
There is continuity between beginnings and endings, birth and death. In one sense, nothing ever totally dies. All life is interrelated and in a constant process of changing. Biologically, we are all a collection of recycled atoms!
But we are more than clusters of cells and atoms. We are interconnected stories and part of a God’s Story of creation, liberation, restoration, incarnation, and transformation.
At the heart of life’s story is love, which is the power that creates us, connects us with one another and the creation, and ever seeks to unite us and enable us to flourish as God’s beloved children.
Sixty years ago tomorrow, June 30, Linda and I entered the covenant of marriage. I’m sorry that she did not live to know her great granddaughter. I can only imagine her ecstatic joy given the chance to hold this new member of our family. I will still celebrate our life together which now lives on in Vera Faye.
Vera not only carries Linda’s genes; she bears her middle name, Faye!
With Vera Faye’s instinctive grasp of my finger, I feel connected to one whose hand I can hold no longer but whose love continues to give life and hope.
Since reaching my 80th birthday in November, I have been keenly aware that I am running out of time. According to the Social Security actuaries, my life expectancy is now in single digits, roughly eight more years. That’s a sobering realization.
For most of my life, my orientation has been toward the future, anticipating and preparing for new beginnings. Beginning school, entering marriage, starting a family, graduating from school, launching a vocation, moving to a new congregation and community, retiring from one position and beginning another one, having grandchildren and even a great grandchild. The future has seemed limitless.
Now, I am living with more endings than beginnings. I have more memories than dreams, more recollections than anticipations. I’m losing more long-time friends and family members faster than gaining new ones.
Diminishment is my reality. Diminished energy, diminished engagements, diminished responsibilities, diminished influence, diminished number of living siblings, diminished circle of friends, diminished mobility.
Although my health is currently strong and my cognitive capacities are intact, frailty is likely just around the corner. I dread that phase for me and my family. I prefer to skip feebleness, but physical and mental frailty is the norm in our later years.
This sounds so depressing! Admittedly, I am grieving a multitude of losses and learning to live with accumulating endings and fewer beginnings.
Laments have become integral to my prayer life. Psalm 71 surfaces regularly: “Do not cast me off in the time of my old age; do not forsake me when my strength is spent.”
Laments, however, clear the way for possible new beginnings. They are means of letting go, probing deeper, and re-ordering priorities. Lament makes possible a re-orientation toward the present and future.
During a seminar on pastoral care and dementia, a friend asked, “Ken, you cared for Linda during the years of her frailty and death. What did you learn in that process that is helpful as you face your own frail years?”
My immediate response was that I know I will be supported in my infirmity by people who love me. As Linda was surrounded by love and support as her capacities diminished, I will be upheld by that same love. I may not be able to reciprocate, but I know from experience that love expands as we live in solidarity with the vulnerable and powerless. After all, love endures because love is participation in the very life of God.
As I have continued to ponder my friend’s question, other lessons have emerged.
Loving Linda in her frailty has taught me to value the present moment and fill it with as much joy and love as possible. In reality, the present moment is all any of us have for certain. As with most things, time increases in value as it decreases in quantity. In a sense, each moment is a new opportunity, even a new beginning!
Linda also helped me to learn that it’s the simple, even unnoticed actions that have the most meaning. A gesture of recognition, fleeting smile, twinkle in the eyes, gentle squeeze of the hand, simple act of kindness toward those nearby have immeasurable effects. Though the circle of relationships may grow smaller, the depth of the love can grow deeper. As Mother Teresa affirmed: “Not all of us can do great things. But we can do small things with great love.”
Finally, I am learning that being really is more important than doing! That is a hard reality to accept in a society that values productivity above almost all else. Human worth often is measured by capacities to produce, to DO! I’m living proof that the ability to DO inevitably diminishes with the advancement of age. But BEING a beloved child of God has no expiration date.
Although death has taken Linda’s presence from me, she remains part of my BEING, reminding me that when death comes to me, I will still be part of those with whom I have shared love.
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.
http://www.carlenmaddux.com/blog/emerging-from-a-hard-season-of-dementia-pandemic-and-death?fbclid=IwAR1h-XAXHba5a_oDEju5sxPG-oPL7mgsa34sYEUrcsCilZZHIGnY6jGgapI
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:
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.
Photo by Norma Sessions
I’ve known it intellectually, but now I’m living the reality.
Grieving means living with paradoxes, struggling with conflicting emotions and desires!Â
I’m less than a month away from Linda’s death. The grief is raw, the sense of loss intense. Here are some of my lived paradoxes:
A friend reminded me, “You can’t go around grief. You have to go through it!” I can’t remove the paradoxes. I just have to live them.
God, grant me the patience necessary for living with and through grief’s paradoxes!
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 —Â
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
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.(Written by Sheri Carder Hood)
Shifting Margins 