Celebrating Love Connections Across Generations

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.

Reflections on Turning 80!

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.

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.

 

Living with Grief’s Paradoxes

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! 

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:

  • relief that she’s at peace and regret that she is gone;
  • desire to engage others and preference for being alone;
  • wanting to remember and trying to forget;
  • confidence that I loved her well and guilt that I fell short;
  • quietness as solace and silence as a void;
  • aloneness as solitude and aloneness as loneliness;
  • clinging to God’s presence while feeling God’s absence.

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!

 

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!