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.

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!

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.