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.

 

 

 

 

 

God Redeems the Silent and Dark Places

As a pastor, I largely overlooked Holy Saturday as an essential part of the divine drama of Holy Week. It was a welcomed day of rest after the intensity of Palm Sunday, Maundy Thursday, and Good Friday.

Not this year! This year the silence and darkness between Friday’s crucifixion and Sunday’s resurrection speaks poignantly to where I am.

Within the last six months I’ve lost my wife of 58 years and an older brother, plus a beloved bishop friend, and two colleague/mentors. Treasured voices have been silenced and the places they occupied have become a dark void.

Added to the void is the isolation of a global pandemic. The wait for release from imposed aloneness is more than three days! We don’t know when it will end. When it does end, life will be different; but the shape of that difference remains unknown.

So, I identify more closely with the disciples on that first Holy Saturday. They were locked behind closed doors. Grieving! Afraid! Lonely! Confused! Apprehensive! Waiting!

Death creates silent and dark places for all of us. All losses are accompanied by silence and darkness.

Life itself is filled with unanswered questions, unfulfilled dreams, unwelcomed loneliness.

It is into all those silent and dark places that Christ enters on Holy Saturday. The ancient creed affirms that Jesus “descended to the dead” and “the gospel was proclaimed even to the dead” (1 Peter 4:6).

In the death of Jesus, God has claimed even the silent and dark places as realms of divine love and promise.

On that first Holy Saturday, the disciples were together in their silence and darkness.

We, too, are together emotionally even though physically separated. It is in our togetherness that God comes in our silent and dark places.

The author of 1 Peter offered this word of encouragement as we wait in silence and darkness: “Above all, maintain constant love for one another.”

Love speaks in the silence and shines light in the darkness!

 

 

 

 

 

Grieving in Isolation

The COVID-19 pandemic compounds and complicates the grief process. It’s as though the whole world is in mourning.

Many are dying alone in hospitals and healthcare facilities cutoff from families.  Funeral services and comforting embraces are limited.

There is a solitude inherit in grief itself. Others may empathetically bear some of sorrow’s weight; but the deepest pain is privately borne.

Yet, we need the comfort that comes from physically connecting with one another — warm embraces, a clasp of the hand, a smile on the lips, or tears in the eyes.

Friday will mark six months since Linda’s death. The intensity of the sadness has subsided and the waves of sorrow wash over me less often. Adjusting to life without her presence remains a daily challenge.

The “social distancing” and isolation are having an impact on my own grieving.  I grieve for and with those who are infected with the COVID-19 virus and their families. The sheer number of casualties is breathtaking.  But they are more than numbers; they are mothers, fathers, spouses, children, friends, colleagues, family.

I feel a certain kinship with them, a solidarity that is deepened by my own loss. There is a strange comfort in such solidarity, a sense of connection with others who grieve. I understand more fully the Beatitude, “Blessed are those who mourn, for they shall be comforted.”

The isolation is forcing me to revisit and work through painful memories. Prior to the onset of the pandemic, my busyness had enabled me to avoid fully coming to grips with some guilt, regrets, and other negative components of grieving.

Now I can’t escape them. The long hours of solitude and silence bring buried thoughts and  emotions to the surface. I’m naming them as they arise, reflecting prayerfully, and sharing them in telephone conversations and messages with family and close friends.

Although I am alone most of the time, I’m not really isolated in my grieving. I remain connected in multiple bonds of love and friendship. And, I’ve committed to reaching out to others who are grieving. With the pandemic, “others” includes almost everyone.

A hymn we sing often at Bethany, the memory care facility where I serve as volunteer chaplain, is “Blest be the Tie That Binds.” We always include this verse:

We share each other’s woes,

our mutual burdens bear;

and often for each other flows,

the sympathizing tear.

Let us find ways of sharing our grief even in this time of isolation. In so doing, we may come to know “the peace that passes understanding.”

 

 

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.

 

Hope for the Past

As dawn breaks on this first day of 2020 and a new decade, we rightly seek glimmers of hope for the future. I wonder, however, if it is past for which we need hope.

A friend sent me a poem this week by David Ray. It is a tribute to the famed poet Robert Frost:

Do you have hope for the future?
someone asked Robert Frost, toward the end.
Yes, and even for the past, he replied,
that it will turn out to have been all right
for what it was, something we can accept,
mistakes made by the selves we had to be,
not able to be, perhaps, what we wished,
or what looking back half the time it seems
we could so easily have been, or ought…
The future, yes, and even for the past,
that it will become something we can bear.
And I too, and my children, so I hope,
will recall as not too heavy the tug
of those albatrosses I sadly placed
upon their tender necks. Hope for the past,
yes, old Frost, your words provide that courage,
and it brings strange peace that itself passes
into past, easier to bear because
you said it, rather casually, as snow
went on falling in Vermont years ago.

Yes,  I need hope for the past!

  •  mistakes of the past are redeemed.
  •  guilt from the past is forgiven
  • grief of the past is comforted
  •  memories of the past are claimed without pain
  • broken relationships from the past are reconciled
  • prejudices of the past are purged
  • hatreds of the past are eradicated
  • lessons from the past are learned

Since the One who creates, redeems, and sustains is LOVE, there is hope for the past and future. Living that hope is the challenge of today!

 

Grieving at Christmas

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Grief dominates Christmas for me this year! Sparkling decorations, joyous music, holiday parties, and upbeat festivities just don’t fit where I am.

I was a teenager the last Christmas I celebrated without Linda. That was six decades ago!   Even though she was not cognitively aware of the last five Christmases, she was still present.

I could see her! Hear her voice! Hold her hand! Kiss her forehead! Comb her hair! Feed her! Brush her teeth! Sit silently beside her and listen to her breathe.

Now she’s gone! Memories remain, but they are accompanied by sadness for what is no more.

Part of me is missing, too.  Adjusting to who I am without her means reorienting my identity, redefining my vocation,  re-ordering everyday living.

But there is a mysterious goodness in grieving at Christmastime. It’s hard to explain.

The pensiveness I feel seems to be stripping away the superficiality of the season and confronting me anew with the profundity of the Christmas story:

The infinite God, the source of all life, who brings this magnificent and ever-expanding universe into being, entered human flesh with all its frailty, vulnerability, death, and grieving. Thereby,  God has claimed all matter, including human life and death, as bearers of divine presence and love.

The ultimate meaning of our existence is to be extensions of the incarnation, birthing and nurturing God’s presence and love amid our living, grieving, and dying.

Grief is love weeping, evidence of love shared. The longing for presence, yearning for recovered memories and lived expressions are signs that love still lives and grows. Gratitude that love remains amid death and loss gives perspective to the grieving.

But Linda is no longer present for me to tangibly share love. That still hurts deeply!

Christmas speaks to that hurt, too! It doesn’t take it away, but it offers a means of redeeming the absence and hurt: I can enter the loss, grief, and longing of others!

There is comfort in solidarity with those who suffer. Some are in our families. Others are neighbors. They need a gentle embrace, a whisper of comfort, perhaps a gesture of forgiveness, a word of encouragement.

There is also comfort in extending hospitality and advocating on behalf of the vulnerable and wounded who also bear God’s image, presence, and love.

Christmas is about God coming in a helpless baby, born of a young peasant, unmarried and pregnant teenager, made homeless by a cruel governmental decree.

The Christmas stories in the New Testament proclaim God’s radical hospitality and prophetic advocacy on behalf of the powerless, despised, and vulnerable people of the world.

Grief has energy, passion! I pray that the energy and passion of my grieving will be channeled into friendship with and acts of mercy and justice on behalf of those with whom Jesus so closely identified that we meet him in them.

That’s what God wants! And, I think that is how Linda would want me to grieve her absence!

Christmas, after all, is about God entering our grief, redeeming our sorrows, and inviting us to join Emmanuel in “the least of these.”

 

 

 

“Thanksgiving While Grieving”

Thanksgiving is different this year.  It’s the first Thanksgiving in sixty years that Linda and I haven’t been together. Her absence is keenly felt. Grief remains raw.

Admittedly, gratitude isn’t the prevailing emotion. Lament prevails over praise. Tears surface more readily than laughter.  Sorrow’s night time still awaits morning’s joy.

Then, I read the Apostle Paul’s exhortation to the Thessalonians, “Rejoice always, pray without ceasing, give thanks in all circumstances; for this is the will of God in Christ Jesus for you” (1 Thess. 5:18).

My first response is “Paul, you’ve got to be kidding! This sounds like a pious positive-thinking platitude propagated by a prosperity preacher.”

I realize, however, that the admonition comes from one who knew far more hardship, suffering,  grief, and struggle than anything I have experienced. He chronicles some of his challenges:

. . . countless floggings, and often near death. Five times I have received. . .forty lashes minus one. Three times I was beaten with rods. Once I received stoning. Three times I was shipwrecked; for a night and a day I was adrift at sea; on frequent journeys, in danger from bandits, danger from my own people, . . ., danger in the city, danger in the wilderness, danger at sea, danger from false brothers and sisters; in toil and hardship, through many sleepless nights, hungry and thirsty, often without food, cold and naked” (2 Corinthians 11:23-27).

So I can’t easily dismiss his admonition that I “rejoice always” and  “give thanks in all circumstances.”  He knows some things I need to remember and practice amid my sadness and struggles.

For one thing, the present circumstance is not the whole story. Loss and grief can feel all-consuming, the tragic end of the story.

But the Apostle Paul knew that our stories are emeshed is a much larger narrative. We are all part a Love Story that encompasses all creation. The Eternal Power that brings creation into existence is ever working to renew, reconcile, heal,  and bring to completion all things.

Therefore, we can rejoice and give thanks that within the worst of circumstances, God is present, working to comfort, heal, reconcile, renew, and bring wholeness. In this Love Story, the most painful and debilitating experiences are woven into the fabric of a new future we call Resurrection!

As participants in this eternal Love Story, we are never alone. We are connected to one another and to all of God’s creation. Paul states it boldly, “Nothing in all creation, in life or in death, is able to separate us from the love of God in Christ Jesus our Lord” (Romans 8:19).

On this first Thanksgiving Day without the physical presence of Linda, I rejoice and give thanks for

  •  love shared for six decades and which continues to bind us together
  •  family and friends who lend their loving support
  •  joyful memories of tender and carefree times
  •  suffering relieved and wholeness gained
  •  hope that “joy will come in the morning”
  •  love that endures
  •  lament amid loss, comfort amid sorrow
  •  being part of God’s ongoing Love Story!

Thank you, Paul, for helping me rejoice and give thanks on this first Thanksgiving Day without Linda’s physical presence.

Hands crossed in prayer

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

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!

 

“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)