Emerging from a Hard Season of Dementia, Pandemic, and Death

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

Uncounted Victims of COVID-19

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.

 

 

 

 

 

Moving from Grief’s Tears to Love’s Smiles

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.

Collage

 

 

 

 

 

 

 

 

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.

 

Lessons from Seminary Class on Dementia

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).

 

Walk to End Alzheimer’s

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!

 

“Glimpses”

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)

31 Lessons Learned from Persons Living with Dementia and Care Partners

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 Wooded Path

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…

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A Surprising Word of Grace

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!

Knowing She’s Loved Is More Important Than Her Knowing My Name

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.Clasping hands 2

 

 

 

 

He Hasn’t Stopped Ministering!

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.

IMG_20190520_121050797 (3)

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!