A Way in the Wilderness

The first year of widowhood is filled with “firsts.”

Some are predictable: holidays, birthdays, trips. Others are less so. I walk naively into a setting, a day, an event, and the full force of loss is mine again. Suddenly I am beneath a crashing wave, tossed about in the disorientation that accompanies acute grief. Every cell in my body cries out to breathe the air of life that was once ours.

I remind myself there is no way out but through. Being in the turbulence and then righting myself—again and again—is how I make my way.

The way feels familiar. During the disease, grieving accompanied each loss. But none was coupled with the aching absence of presence this final one is.

Still, perhaps there are lessons.

Alzheimer’s destructive path called for continuous adaptation. As Dale’s confusion increased, the world of thoughts and ideas receded and created space for the flow of life in the present. Of necessity, we learned new ways of being. In this sense, we were nourished by loss, like a seedling growing from a “nurse log.” Out of death came life—a new way of being “us”—again and again.

We did not do this alone. Countless expressions of Love—seen and unseen—nourished…watered…sustained us.

Surely that same Love holds me now. And I am beginning to trust that even from the depths of grief, something new can be born.

Signs of this abound…and invite hope. Seeds give way to tiny plants as they awaken from dormancy. Buds burst open on branches that appear lifeless. Wings break forth from dry, motionless cocoons.

May my mourning tears provide that which is needed for new growth. May these dark places, like warm soil around a seed, provide nourishment for my life.

“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

Transitions

The movement of Alzheimer’s disease is uneven. Sometimes abilities are lost and then return, only to be lost again. It can be difficult to know when something is finally gone. Until it finally is.

This is my reality now.

As parents mark precious “firsts” in their children—first smile, first words, first steps—I have now marked “lasts” for my beloved Dale: last steps (October 25), last smile (November 3), last breath (November 9, 11:36pm). He was at home when he made his final transition. He was peaceful.

There was a shift to some other space and time during those last days of Dale’s life. I functioned as if in a bubble that cushioned me from the shock of what was to come…following instructions from the hospice nurse…facilitating calls and visits from loved ones. I talked to Dale, telling him how much I loved him and what a brave man he was. I recited the 23rd Psalm and the Lord’s Prayer. I sat beside his bed and sang hymns.

And he sang to me. One last time.

When the disease removed Dale’s vocabulary, he replaced it with his own words. They were almost always happy and upbeat, often rhymed, and were strung together in sing-song-y ways.

One last time I heard them. It was also the last time he looked at me and smiled. His voice was a whisper, but that night he sang to me: those sweet rhyming words. Happy and peaceful.

Dale’s last transition on his journey with Alzheimer’s disease mirrored his first. He had faced the enormity of his diagnosis with acceptance, writing soon afterward of his “trust in God’s Grace and God’s guidance.” He walked the journey this way, too: with acceptance and trust.

His way is a model as I make my own transition and adjust to life without his physical presence.

Like his disease, the movement of grief is uneven. Sometimes I inch forward, creating a new pattern for myself, only to be triggered—by a memory, a song, an item of his clothing—into the intense pain of loss. During those times, I miss him, every version of him—Dale before his disease and Dale during the journey. I miss his broad smile, his warm hugs, his loud voice, his big, hearty laugh.

Sometimes in the silence, I remember his reality checks and hear again what he said about his condition:

“Okay, this is it. I don’t like it. I didn’t want it. But I’ve got it. And I’m going to do the best I can with it.”

And again, I say, “Me, too, Dale. Me, too.”

https://www.whitakerfuneralhome.com/obituaries/Dale-Robert–Sessions?obId=23049978#/obituaryInfo

Love Song

Dale and I discovered early on that music had a central place in each of our lives. Over the years of our marriage, music filled our days and brought us joy—at home, at concerts, on the road. We traveled many a mile singing along to songs on the car radio and playing our version of “name that tune.”     

Music only grew in importance when we began living with Alzheimer’s. In mid-stage disease, music lifted Dale’s spirits like nothing else, and he would often break into his “freestyle” dance. During the last few years of our daily walks, we would sing together. “You Are My Sunshine” was a favorite.

While it’s difficult to know when the last time is for anything in this disease, it appears that our singing together has come to an end.

I still sing to Dale. But I miss his voice. I miss his exuberant rendition of certain songs. I miss the sound of our voices together.

And I miss that “sound” in other aspects of life. Although I’ve had years to become accustomed to doing many things alone, I still feel an uneasy silence where his voice used to be. I think, “Dale would know this.” “Dale would remember that story.” I yearn for his humor and laughter, his reality-checks, his loving reassurance. I long to hear his part of the duet we once sang together as a couple.

In my grieving, it is comforting to remember that from the beginning of our marriage till now, others have been singing with us. A sanctuary filled with friends and family witnessed our union. Loved ones have been there for and with us—our “back-up singers” who made our song more beautiful. That is still true.

It also helps to affirm that the melody we sang as a couple sounds on. I hear it in the daily walk of this journey. And as some music does, it has made its way into my very being. I am more than I was because of our relationship, because of who we were and are together. I carry our song within me.

As decisions in this stage of his illness become more difficult, may I sing our song with courage, listening for Dale’s part so we are in tune. May Love always remain its theme.

Does He Still Know You?

I’m asked this question more often now. I don’t always know what to say.

Last week, the receptionist at the dentist’s office asked.

I replied, “Sometimes.”

Sometimes there’s a clear look of recognition in his eyes. I’ve known it for decades. It’s Dale looking at Norma, or at least, at someone he loves.

Other times there is no recognition that I can discern. During those times, it seems that I could be anyone as I feed him, help him in the bathroom, put him to bed.

Several years ago, he stopped saying my name. Last year, he told our caregiver that I was his “mommy.” Each shift was disorienting, but his looks of recognition reassured me that I was still someone he knew.

Now these, too, are fading. It feels as though I am leaving his sight, his awareness.

The disease has been separating us for years, removing recent experiences, shared history, common language. Whenever I feel unseen by him, the reality of this separation hits especially hard.

More and more, Dale is on a different path and entering a world that I am not a part of.

It is the most painful part of the journey to this point.

Does he know me? I’m not sure. Sometimes.

I hold on to hope that he knows me in ways I may not be able to discern.

Even more, I hold on to hope that he feels known by me.

Each evening when I help him get back in bed, I pull up his covers and say, “I love you, Dale.”

Last night he replied, “I know it.” I told him I was glad.

Even though Dale may not know me in the ways he used to or in ways that I can see, may he know this: that he is loved.

May he always know he is loved.

Moments

When reflecting on Dale’s recent changes, I’ve thought, “Our moments keep getting shorter.”

For most of Dale’s disease, we shared the present. Despite the losses of memory and language, we could be together in the moment. But this is waning now, too. Times of recognition and meaningful exchanges are brief and less frequent.

Our moments keep getting shorter.

Photo: Norma Sessions

When they occur, it is like being surprised by beauty…like looking up and seeing a glorious cloud formation, or a rainbow, or a spectacular sunset. In these moments I am suddenly stopped in my tracks. Fully present. In awe.

Such a moment happened earlier this month, on the evening of our 36th wedding anniversary.

Dale tires easily and goes to bed early. However, he doesn’t always rest easily. Confusion increases. I often see him pointing up toward the corners of the room, saying things I don’t understand. Sometimes my presence seems to disturb rather than comfort him.

When I went in the bedroom that evening, I found him awake and making eye contact with me. I knelt beside the bed so we could be face to face. His eyes were clear and focused. He smiled and said, “You’re pretty!” I thanked him and told him I loved him. He returned the “I love you” but soon his attention was elsewhere. I held his hand and he looked at me again, saying, “You’re pretty!” and then “I love you” in response to my saying it. For some minutes we were together like this. Together in our moments. Connected in love. A precious anniversary gift.

“Sometimes you picture me, I’m walking too far ahead
You’re calling to me, I can’t hear what you’ve said
Then you say, ‘Go slow’, I fall behind
The second hand unwinds.

If you’re lost, you can look and you will find me
Time after time.
If you fall, I will catch you, I will be waiting
Time after time.”

From Cyndi Lauper’s “Time After Time,” the song we selected as “ours” and danced to during our wedding reception, June 2, 1985

Faithful Companion

Weeks before I was aware of the magnitude of Dale’s most recent changes, our dog Lucky Day seemed to sense it.

I began finding him not in his usual sleeping spots, but instead, curled up on the bed at Dale’s feet.

I didn’t expect him there. The bed is high. Lucky Day is a little dog—a chihuahua mix with an arthritic back. I wasn’t sure he could still jump that far. I also knew that Dale would not have encouraged him to come up because the disease has disrupted Dale’s awareness of who Lucky Day is. But increasingly, Lucky Day would choose, again and again, to be at Dale’s feet. It was a surprise to me.

Adoption day: October 1, 2016

Perhaps it shouldn’t have been. Lucky Day and Dale have had a special bond from the beginning. In 2016, when we said good-bye to our 17-year-old dog Jim-Bo, Dale told me that he hoped for another dog. So, we began working with a local rescue organization to find one. When the organization suggested a few to consider, I showed Dale their pictures. Dale said, “Well, they are all nice. But I like him.” (pointing to a picture of Lucky Day)

At the adoption event, Lucky Day and another recommended dog were side by side and looked very much alike—same coloring, about the same size. I showed both to Dale and again he pointed to Lucky Day. This time he said, “I want him.” As soon as Dale squatted down to pet him, Lucky Day jumped in his lap. Home with us he came.

Lucky Day has since spent many happy hours taking walks with us, sitting in Dale’s lap, or snuggled up between us. Over the years, he has adapted to Dale’s changes. He no longer hears Dale call his name or lovingly say (as Dale once did frequently) “You’re wonderful! You’re the best! I love you!” It is rare now that Lucky Day feels caresses or any other expressions of affection from Dale.

And yet, Lucky Day has not given up on his buddy. Even when Dale ignores or resists him, Lucky Day responds with unwavering loyalty. He jumps up to sit beside Dale on the couch and spends hours curled up beside Dale while Dale sleeps.  

April 2021

Lucky Day is teaching me about faithful presence, true devotion, and unconditional love. Dale may have forgotten who Lucky Day is, but Lucky Day has not forgotten Dale.

“But ask the animals, and they will teach you;
the birds of the air, and they will tell you;
ask the plants of the earth,

and they will teach you;
and the fish of the sea will declare to you.
Who among all these does not
know that the hand of the Lord has done this?
In his hand is the life of every living thing
and the breath of every human being.”
Job 12: 8 – 12

Still

The disease keeps moving, whether I am aware or not. Whether I accept it or not. That is its nature.

Its gradual movement creates an illusion of stillness: like the subtle changes in daylight that go unnoticed until suddenly (it seems) it is dusk…or like fog rolling across a lake until the water is covered and the shoreline invisible.

Photo: Norma Sessions

So it is with Dale’s latest changes.

Suddenly (it seems) he is sleeping more hours than he is awake; content to sit because standing and walking are challenges; leaving food items on his plate that he once ate with pleasure.

This transition feels shocking to me, despite the length of our journey and all the signs along the way. As I look back, I can see dusk approaching…the fog rolling in. I can see the gradual movement to where we are now.

But still, my whole being responds: How can this be? How can it be that our daily walks together have ended? How can it be that Dale is no longer my dinner-and-a-movie partner each evening? How can this be?

As I inch towards acceptance, I look up to see that there are guides along our way: hospice CNAs who bathe Dale with skill and compassion; chaplains who sit with us, pray with us; caregivers who bring smiles, experience, and helping hands; fellow travelers who know this place well and listen with deep understanding; friends and family who express love in myriad ways, lifting our hearts and assuring us that we are not alone.

And still, Dale is here…in his smiles and laughter, in moments of recognition and connection, even amid periods of intense confusion and long hours of needed rest. Still. Here.

“Still is still moving to me
And it’s hard to explain how I feel
It won’t go in words but I know that it’s real
I can be moving or I can be still
But still is still moving me
Still is still moving to me.”

From Dale’s favorite Willie Nelson song: “Still Is Still Moving To Me”

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.

Photo: Norma Sessions

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

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.)

Photo: Norma Sessions

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

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.

Photo: Norma Sessions

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.