More Than

Soon after Dale was diagnosed, we began considering a move to a continuing care community. While I knew the wisdom of this, I remember discussing my feelings of hesitancy with a friend. I said, “I don’t want to move to a place where people only know Dale as ‘that man with Alzheimer’s disease.’” My friend replied, “But if you move soon, they will get to know Dale as he is now.”

That is what happened. The progression of his disease moved slowly in those first years, and the people in our new community came to know Dale when he could fully engage in conversations and share his own story. Many grew to love him and still do, no matter the changes.

There are times when I still feel that longing for others to know Dale as more than a man with Alzheimer’s disease. Any new medical situation is where I sense it most acutely. There are usually only a few seconds to say the most basic things to the staff as we walk into the examining room: “His language comprehension is mostly gone. You will have to show him what you need him to do.”

However, I want to say: “This is Dale Sessions. He has been my beloved husband for 35 years. He is more than his disease. He has a story.

Dale is a man of courage and compassion. As a minister, he was not afraid to ‘rock the boat’ when advocating for issues of social justice. He was a chaplain who cared for people with the disease he has now…a pastor who walked beside many in times of illness and death…a skilled counselor with people suffering from mental illness and addiction.

When Dale asked how you and your family were, it wasn’t perfunctory; he really wanted to know. He was genuine and had little patience for pretense. As a friend put it, Dale could tell ‘chicken s*** from chicken salad.’

Dale loved to tease and laugh. He still does, although you may not be able to understand his jokes. Music fed his soul and continues to. He cared and loved deeply. He still does.”

Of course, outpatient medical offices are not set up to hear people’s stories. They are equipped to treat whatever the presenting problem is, and I am thankful for the expertise of those professionals. I am also thankful for care providers who treat Dale as a man who is far more than his disease.

As I write this on the eve of his 81st birthday, I am filled with memories of Dale’s story and deep gratitude for all that he was and is. May he know tomorrow—and each day—that we are happy he was born. May he know each day he is dearly loved.

That Which Abides

One morning several years ago, I noticed Dale’s wedding ring and another ring on the bedside table. Assuming he had just forgotten to put them on, I took them to him. He stretched out his hands, showing me that he had two other rings on them. I held up his wedding ring and pointed to his left hand. Nothing registered. I showed him my ring and how the two matched. Still no comprehension.

This precious gold ring—the one I had placed on Dale’s finger during our wedding ceremony—had, to him, become just another ring.

Clearly, the disease was on the move, cutting a wide swath through Dale’s brain, destroying long-held memories and separating meaning from things. Spoken words were becoming just sounds. Beloved possessions, simply objects. With no access to key parts of our story, the ring’s significance as a symbol of our union was gone.

During this same period, it seemed that I, too, was beginning to disappear from his awareness. He stopped saying my name, and no longer recognized it when others said it.

Who am I to him? I wondered. Who are we to one another if he no longer understands the concept of “spouse”? What is a marriage when I alone hold our story, remember our wedding, understand the symbolism of our rings?

Although who I am to Dale is not always clear to me, this is clear: Love—the reality we celebrated 35 years ago with an exchange of rings—still IS, no matter what Dale calls me or what he remembers from day to day. It does not live in the symbols that once had meaning to both of us. Love is embodied in our actions. Every day.

We continue to encircle one another with it, despite the destruction caused by this terrible disease. Love is expressed not only in my caregiving tasks but in Dale’s own actions and responses.

It is different these days. Sometimes disease-related confusion creates barriers. And sometimes my patience wears thin. But love still IS, and it is expressed in both new and old ways: A clasp of the hand. Patience when either one of us has to wait. Willingness, on his part and mine. Shared laughter. A look of recognition. A smile.

Concepts fade away. Symbols lose meaning. Love is what is real. Love is what abides.

“When you put these rings on each other’s fingers, they become symbols of your pledge to one another…that you will encircle one another with your love, your care, and your protection, that whatever happens, you can depend on one another…Your ability to give yourselves to one another is not perfect now, but you will learn to give yourselves more and more, until the gift is like the ring, continuous and whole.”
                                                                                      From our wedding ceremony, June 2, 1985

Finding Our Way

Ten years ago today, I sat alone at the Emory Alzheimer’s Disease Research Center, waiting for Dale to emerge from the room where he had been taken for cognitive testing. My heart dropped when I saw him walk toward me. He looked shaken. Defeated. I had never seen him that way. He composed himself a little as he sat down beside me, saying, “I never did well on tests like that.”

We had wanted to know.

And soon we did know: Dale had the same disease that had taken the lives of his father and brother.

Learning the diagnosis early enabled us to enter a clinical trial and motivated us to move to a retirement community.

But the news also shook me to the core. I felt as if we had suddenly been dislodged from familiar land and were floating out to sea. No oars. No compass. Adrift.

Similar feelings would wash over me with each change. What do I do? What’s next?? I wanted to know, to be able to see ahead, to understand. I read everything I could find that might enable us to chart our course.

What I learned was helpful. With every new sign of the disease, it became easier for me to imagine broken connections in the brain and respond with compassion. But there was a frantic nature to my quest…as if learning could somehow stem the tide of the disease…as if knowing would be our salvation.

In these early days, a friend said calmly, “We’ll be in the boat with you.” Those reassuring words were followed by regular calls and visits. Other friends and our family members reached out with similar words and actions.

It is this kind of knowing that has sustained us. Heart knowing. An awareness of need followed by a loving response.

There is no way to count the many acts of kindness we have received these last ten years. So many people have reached out with caring hearts, saying, “we are with you” through notes, calls, visits, shared memories, tears, and laughter. I picture them as lights on our path…buoys on rough seas…outstretched hands as we run this marathon.

Heart knowing uplifts. Provides hope. Helps me know that while there is a disease ravaging Dale’s brain, he is still here. Assures us that we are not traveling alone.

This is the kind of knowing that fills our hearts with gratitude, sustains us on our way, and is the compass for the journey.

“Love never ends.
But as for prophecies, they will come to an end;
as for tongues, they will cease;
as for knowledge, it will come to an end…
And now, faith, hope, and love abide, these three; and the greatest of these is love.”
I Corinthians 13: 8, 13

Inscription

One morning two years ago, I found Dale staring at a plaque he had received in appreciation for his work as a mental health chaplain. He had already lost access to much of his long-term memory and was losing his ability to read. I had no idea what meaning the inscription might still have for him.

He finally said, “That says ‘Dale Sessions.’ It’s supposed to be me. But I’m not. I’m supposed to be me, but I’m not.”

It was common to hear statements like this from him during that time. Once when baffled by something I said, he replied, “Well, I know you are a human being, but I am not a human being. I’m just nothing.” Heartbreaking to hear, even when his laughter followed.

Like encroaching darkness, the disease was moving across Dale’s brain, reducing his abilities to remember, speak, understand language, and think clearly. He could feel the losses.

During the months he was making statements about being “nothing,” though, he was living otherwise: helping serve communion at the memory care unit; proclaiming “Hallelujah!” throughout the day; lifting spirits in the community dining room with each entrance.

And now, after many more changes, Dale still IS: happily greeting neighbors and enthusiastically waving at cars that pass. It is Dale who laughs with surprise when I come back into the room and says, “I know you!” or “Thank you!” or “I love you!” He is still connected to others and to life. Changed and changing. But still Dale.

There is continuity amid the changes of this disease: a precious thread of identity that persists despite change and loss. Like the sky’s colors that change as the earth rotates away from the sun—and yet are still “sunset” and still beautiful—Dale still IS—and is himself—amid the changes of his disease.

And as he forgets more and more, we remember him. We hold the versions of himself that he may forget, and love the one who is beside us.

As our caregiver often says, “He is still in there. And he matters.”

Yes. And that’s what matters.

But Zion said, “The Lord has forsaken me,
my Lord has forgotten me.”
Can a woman forget her nursing child,
or show no compassion for the child of her womb?
Even these may forget,
yet I will not forget you.
See, I have inscribed you on the palms of my hands;
your walls are continually before me.
Isaiah 49:14-16

Rivers in the Desert

When we first began living with Alzheimer’s, I looked ahead to a future of loss upon loss: relentless destruction of memories and abilities for Dale; mounting grief and exhaustion for me.

The disease has certainly lived up to its reputation. It has created gaping caverns where thoughts once effortlessly flowed. It has made everyday tasks—dressing, bathing, toileting—baffling puzzles that cannot be completed without help. Grief for these losses is a constant undercurrent and restful sleep is a welcomed gift.

And yet, amid the terrible destruction, amid the unraveling of relationship and shared story, there has been a forming.

A new thing.

Like new skin—imperceptibly created as the old sheds—a new way of being “us” has formed.

This new thing has not appeared merely in spite of, but rather because of what has been lost. Like a seedling springing up from decaying wood, it is nourished by loss.

In the past, our thoughts, ideas, and memories ruled our interactions. They fueled our conversations, created our history, propelled our plans and activities.

But the disease has removed that capacity in us. Cognition is no longer the dominant force in who we are together. Its decline makes space for new ways of being, for the flow of life in the present.

In the present, we simply ARE. We are learning to BE and to love in new ways.

There is a special tenderness as I become the hands for Dale, tending to all that he once did for himself. Laughter and delight erupt spontaneously with things that have become surprises: seeing a neighbor, tasting an ice cream cone, hearing Chuck Berry’s “Maybellene.” Gratitude and awe expand each time we walk outside and the blue sky is completely amazing once again.

I have not stopped missing all that we were together. And there are times when confusion intensifies and builds a barrier between us. But I am learning to give thanks for what is…for the new ways we love.


I am about to do a new thing;
now it springs forth, do you not perceive it?
I will make a way in the wilderness
and rivers in the desert.
Isaiah 43:19

Dance Lessons

Despite how he looks in the photograph, Dale was never comfortable dancing like this. He used to laugh and say that the ballroom dance classes his mother sent him to as a boy never “took.” Still, he was a good sport when it came to my love of dance. And in our dance of life, Dale has been a sure-footed and grace-full partner.

Our “dance” as a couple was not always smooth, especially in the beginning. We occasionally stepped on each other’s toes, broke connection, heard the beat differently. But over the years of our marriage, certain patterns and rhythms emerged: the pace of conversations, the meaning of a certain look or touch, the balance of time together and time apart, the holding of our joys and pain.

As we danced through life together, these small intricate movements became our muscle memory, our own unique choreography, the composition “us.”

We barely noticed when Alzheimer’s disease entered the dance floor. It stood off to the side, an irritating distraction causing us to cling more closely together. But over time it grew loud and bold. Like a drunken party-goer, it rudely broke in and disrupted our dance, requiring us to learn new steps on the fly. It altered the patterns and rhythms that were familiar and dear to us. Its unpredictable behavior now forces near-constant improvisation.

Today there is another threat lurking outside the dance hall, a virus that has the potential to further disrupt, and even end, our dance together.

While I take my cues from Dale’s movements, it is up to me to guide us safely across the dance floor. How do I remain sure-footed when these intruders are intent on doing all they can to cause me to lose my balance? How do I move forward with grace when pulled down toward fear and despair?

There are certain practices that help. Even if I could do them consistently, there would be days I’d be caught off balance anyway. That is the nature of the intruder we live with. Here are some lessons I am learning:

  • Remember to breathe. As one of my dance teachers used to say when we would concentrate so hard that we’d forget: “Breathing is good!” Yes! A deep breath provides needed oxygen and helps me focus and relax into the next move.
  • Warm-ups are essential. Every ballet class begins with time at the barre, where basic steps are practiced and strengthened. I can’t dance with Dale, especially now, without practicing basic self-care (self-love): eating well, sleeping as well as I can, making time for solitude and prayer, exercising, and taking breaks.
  • Be gentle with myself. Improvisation is hard and new steps can be scary. Mistakes are to be expected. It is best—for Dale and for me—if I can forgive myself and keep dancing.
  • Be present in the moment. I can lose my footing by focusing behind with regret or ahead with dread. Also, the present is where Dale IS, and a touch or look can bring us shared joy.
  • It’s no solo act. Leaning into the ensemble that surrounds us—friends, family, support groups, professional caregivers— helps keep me steady and balanced.
  • Look up and smile. Laughing, singing, and (literally) dancing together have always been a part of our life, and they continue to lift our hearts.
  • Focus on what I can control. I can’t control the actions of these two diseases. I CAN focus on my own steps—protecting us as well as I can from the virus and adapting to the changes that Alzheimer’s brings.

Our dance together has been altered significantly by Alzheimer’s over the past 10 years. Much has been lost and the sadness at times can be overwhelming. However, the love that brought us together 35 years ago remains. Our basic connection endures. Love abides and abounds! Thanks be to God!

Clearings

Years ago, a member of my support group remarked: “There’s only one direction this disease goes.”

It was a little jarring to hear, but he was right. Those diagnosed with Alzheimer’s live with a terminal disease that has no cure.

While the direction of the disease is predictable, its movements along the way are something else entirely. Like shifting fog, there is a rising and descending, places of clearing followed by a return of thick haze. We have no warning of its movements, no way of knowing when a cloud will cover what was once easily seen.

It was October 2017 and we had returned home after an appointment with the eye doctor. Dale walked into the living room and said, “There’s something wrong with me.” I said, “I know. You have two diseases: Alzheimer’s disease and glaucoma.” I briefly explained each one. I realized by his emotional tone that it was the Alzheimer’s disease that was suddenly “news” to him. He said somberly, “I never thought it would do it.” I said, “I know. None of us did.”

For seven years, Dale had been in full awareness of his condition. At some imperceptible point, a cloud had descended on that knowledge and he was experiencing the news as if for the first time.

We sat together for a long time, mostly in silence, my arm around Dale, and our dog Lucky Day on our laps. I reminded him how brave he was to participate in the clinical trial. I told him how he helps people in our community every day with his warmth, humor, and compassion. He said several times, “Well, it is what it is.” I affirmed this with statements about living each day well, doing the best we can. Finally, he said, “Well, I’ve had a good life.” I agreed. Then he said, “I’ve helped people.” I affirmed that, too, and told him he was still helping people.

As my heart was breaking for him, it also felt like the chasm created by the disease was bridged. It was as if Dale had suddenly stepped out of the fog into a clearing and I could see him. We stayed in this place together for more than four hours.

Then as silently as it appeared, the clearing was gone.

I could see it in Dale’s face as we walked around the pond in our community later that afternoon. The weight of sadness brought by the news had been lifted. And a new clearing appeared, the kind that arises from the heart, disease or no disease. Dale began talking about the close calls we have had but that God has saved us. “Thank God,” he said, and then, “God is best!”

Amen, Dale. Amen.

Accompanied

(As the news of the pandemic and its effects grew more dire, I became hesitant about sharing anything but the most positive parts of our journey with Alzheimer’s. In no way do I want to add to the distress felt by so many. However, I know there are many others still walking this same path with us. And there are now countless others suffering in new and shocking ways. I decided to share the following short piece, “Accompanied,” which is drawn from a 2015 journal entry. I post it today—on Good Friday amid a pandemic—with my fervent hope and prayer that all who walk in darkness sense in whatever ways are most meaningful to them that they are not alone.)

Images of darkness surround me.
I see gaping holes…
deep craters…
where  
light-filled neurons once carried
memories…abilities…capacities.
Now darkened. Destroyed.
Eaten away by disease.
Gone.

Crying, weeping…
I am standing in these places
where life once was…
where light had been…
now
new tombs…
barren and dark.

Suddenly the Holy One is beside me,
doubled over with grief, weeping with me.
I am not alone.

Where can I go from your spirit?
    Or where can I flee from your presence?
If I ascend to heaven, you are there;
    if I make my bed in Sheol, you are there.
If I take the wings of the morning
    and settle at the farthest limits of the sea,
10 even there your hand shall lead me,
    and your right hand shall hold me fast.
11 If I say, “Surely the darkness shall cover me,
    and the light around me become night,”
12 even the darkness is not dark to you;
    the night is as bright as the day,
    for darkness is as light to you.

                                Psalm 139: 7 – 12, NRSV

What Do You Know by Heart?

It was October 2016 and we were sitting at the kitchen table, eating our morning cereal. I was looking at news articles on my phone and mentioning headlines to Dale.

Suddenly Dale was tearful. When I asked what was wrong, he said, “I’m so sad for the bishop.”

“The bishop” was Dale’s name for our friend, Kenneth Carder. We had not been talking about him, but suddenly Dale was crying for him.

For months we had been visiting Kenneth’s wife Linda at Bethany, the memory care unit in our retirement community. With each visit, I would have to remind Dale why we were going. I had no idea that he could retain any understanding of the Carders’ situation.

Decades earlier, Dale preached a sermon with the title, “What Do You Know by Heart?” At the beginning of the sermon, Dale explained that his question was not about rote memorization, but about the things that we know by heart, that are “etched upon the walls of our inner being, stitched upon the fabric of our souls.” He then shared stories in which Grace was experienced and the person was touched deeply—and changed by—Love.

That sermon title and meaning remained with me over the years. Following the breakfast table conversation, I wrote in my journal: “He may not remember many things, but he knows the important things by heart.” I noted also that he had cried at a neighbor’s funeral the previous week and had cried when he learned about another neighbor’s illness. He would not have been able to recite any details about these people, but he was able to know deeply and share in the sadness of each situation.

Despite greater confusion and far fewer words now, Dale embodies important things by heart. He greets each person he sees with warmth and genuineness: “You’re good!” or simply, “You ARE!” One of the last times we were in our community dining room Dale told a new server, “I love you!” The light in her face revealed the power of his heartfelt statement.

I will close with words from his sermon: “…Grace spills forth…not because we earn it. We can’t. Not because we merit it. We can’t. But only because at the heart of all life beats a heart of Love. I know this by heart because it changed my life.”

Yes indeed, Dale. Thanks be to God.

Words

“Well, that was a big mess,” Dale whispered in my ear as he sat down beside me in the pew.

It was January 2015 and Dale was serving as lector in the chapel of our retirement community. He had just read the scriptures for the day and struggled with words more than he ever had before. The parts he read well were beautiful. But alongside those words, I could hear evidence of the ones the disease had begun to steal.

Words. They were Dale’s medium.

An enthusiastic speaker, an energetic conversationalist, a voracious reader, a quick-witted tease—words were how Dale engaged in the world.

They were his tools as pastor and chaplain: words of comfort at bedsides, eloquent prayers in worship, words of instruction and challenge in teaching and preaching.

Words filled our life together. Dale would wake up talking, sharing his thoughts about what he had been reading, or a new sermon topic, or his concerns about current issues. He filled notepads with words as ideas flowed. He filled his mind with words read in newspapers, magazines, and books.

When the disease took hold, sentences began getting twisted. Reading and spelling became laborious. Comprehension started to fade. Speech grew sparse.

Like the slow defoliation of a great tree, Dale’s words began falling away.

It’s been the most shocking to me of all the losses so far, and the most challenging. As instructions became impossible for Dale to understand, I’ve had to depend on his willingness to follow as I guide us through each day.

Now few words remain. And those that do are as precious to me as the first words of a baby to a mother. Cherished. “Thank you.” “I love you.” “You’re good!” “You ARE!” “I know you!” “That’s stupid!” (Well, some cherished more than others.)

Dale and I are finding our way on new ground, without the familiar canopy of words. In its place, there is light…space…where other expressions grow: an outstretched hand, a smile, a soft pat on the back, shared laughter, a song, presence.

And in that space, love abides, words or no words.