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.
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 —
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)
I entered Linda’s room shortly after she had been bathed. She was wide awake! When our eyes met, a faint smile appeared. I leaned over and kissed her on the forehead. I remarked as I combed her hair, “You look pretty in that pink gown!”
Then, I spoke the words I say several times every day: “I love you!” Seldom does she respond, or seem to know what I’m saying, or even who I am. But not this time!
She looked intently into my eyes. A broad smile appeared. Then she clearly spoke these simple, surprising words: “You’re wonderful!”
Such poignant moments of connection are inexplicable and rare for someone in the advanced stage of dementia.
The question often haunts me: Does she know that she is loved, that I love her? So seldom does my presence make an observable difference.
Feelings of powerlessness in the face of her restlessness and agitation are the norm. Sadness and grief are always lurk in the shadows.
But unexpectedly, inexplicably comes a moment of connection, an assurance that love endures, that persistent expressions of devotion matter.
I don’t know what neuroscientists would call it. I call it GRACE!
Linda awoke from her night’s sleep with me standing over her, gently stroking her hair. She gazed at me with a confused look and asked, “Who are you?”
Being forgotten is a painfully common experience of those whose spouse or parent has dementia.
It hurts to never hear your name called by one with whom your life has been lovingly intertwined for decades.
“I’m Kenneth, your husband,” I responded as I leaned over to kiss Linda on the forehead. “I love you!”
Suddenly, the confused look gave way to a twinkle in the eyes and a gleeful smile. There was a recognition deeper and far more important than my name. It was the recognition, “I am loved!”
I often hear family members, pastors, and friends say they don’t visit those with dementia because “they don’t know me any longer.” Increased isolation results and persons with dementia get cut off from the very thing they most need–the assurance of love.
Whether Linda knows and speaks my name is far less important to me than she know that she is loved.
In her fleeting smile and momentary sparkle in the eyes, I knew that I, too, am loved. And, we both are enfolded in a Love that transcends words or the sound of our names.
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.
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!
The loss of memory is one of the most dreaded symptoms of Alzheimer’s and other forms of dementia. My wife, Linda, has lost the memories of our almost 58 years of marriage. It’s a tragic loss!
Recently, I was privileged to spend time at Jubilation, a gathering of older adults in my home conference, Holston. The theme for the event was “More Than Our Memories,” as we dealt with the challenges and opportunities of dementia.
I was reminded of how much of our identities and memories are held in community. Some people present shared memories of Linda and me that neither she nor I recall.
People lose their memories only if the community no longer remembers! We are stewards of one another’s memories!
As John Swinton reminds us, “The tragedy is not that people with dementia forget; the tragedy is that they are forgotten!”
This week I sent the final draft of manuscript, Ministry with the Forgotten: Dementia through a Spiritual Lens, to Abingdon for the their review and editing. The book is the outgrowth of the journey Linda and I have been on for more than ten years.
Dementia is seen in our society almost exclusively through a medical lens where the focus is on symptoms, lost capacities, and grief. Such a narrow lens contributes to the current fear, stigmatizing, and marginalizing of people with dementia.
The book seeks to broaden the lens by locating dementia within God’s Story of creation, liberation, restoration, incarnation, and salvation. We are all more than our limitations, capacities, and losses. We are beloved children of God, created in the divine image, redeemed by God’s grace, and incorporated into a new community.
I am honored that the Foreword is written by Warren Kinghorn, a psychiatrist and theologian, who teaches in both the Medical School and Divinity School at Duke. His short Foreword is worth more than the book itself!
The book should be available by August. The royalties from its sale will go to support ministries with people with Alzheimer’s and other forms of dementia and those who care for them.
Birthdays are occasions to declare that people are stories rather than symptoms; and sharing love is the abiding theme of our stories. In the sharing of love, our stories intersect with God’s Story.
Thank you, Linda, for your remarkable story of love! Being part of that story is the greatest joy of my life.
as Linda moves deeper into her dementia
Shifting Margins 