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

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

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.

The Gulf

“Moorings cast off, he is sailing away without me…”
 ~ my journal, May 2014

At the time I wrote those words, Dale’s new memories were veering farther away from any semblance of our shared past. Friendships with celebrities and exciting trips all over the world were becoming a part of our story.

More than this, though. Aspects of the man I had known for more than 30 years were changing:

  • Dale, the person who found joy in lively discussions about news and ideas, was having difficulty analyzing issues and events.
  • Dale, the one who added energy and laughter to any room he entered, was becoming quieter as following conversations became more challenging.
  • And Dale, the man whose sensitivity and understanding I treasured, could no longer easily see things from another perspective.

As these changes unfolded, a gulf developed between us where our familiar interactions had been. I found that I could no longer “think out loud” with him or talk in depth about things that were troubling me. Anything hypothetical was increasingly puzzling to him. Conversations about plans and decisions became too confusing. Even discussing the news was difficult because it was contaminated with his false memories. It felt like the tide of his disease was taking us away from one another.

More than this, though. It felt like Dale-himself was disappearing.

It was during this period that my brother David remarked: “The person you miss the most is sitting right beside you.” I can think of no better description for how it felt then…and how it feels now as the losses mount. It’s one of the many paradoxes of this journey: presence and absence, side by side.

This is what I keep learning: each disease-related loss creates a different version of Dale. No “shell” of himself, but fully present in both familiar and new ways. Different, not gone. Parts of him are no longer accessible. I miss those things. I grieve those losses. But he is still here.

Dale IS sitting right beside me. The gulf is bridged each time I meet him in the present moment. He has not sailed away. He has not disappeared.

He is still here.

Departure

“See? I remember that house! We were just here!”

We were on our way to spend time with friends at the beach and hadn’t been on this road in years. Dale sat in the passenger seat, pointing to houses, stores, even parked cars, repeatedly telling me that we had just seen each one.

Nothing like this had happened before in our short journey with Alzheimer’s disease. I had never even heard of such a thing, and it seemed especially strange this early in the process.

Over time these episodes became common and eventually were the norm. Almost everything new—people, places, things—became familiar to Dale and were woven into an ever-changing version of his past and ours.

As unsettling as they were to me, these recollections were clearly helpful for Dale. He would express great delight at having “just remembered” something, even telling his neurologist at Emory that his long-term memory was much better than mine. The new memories brought him happiness and a sense of fulfillment.

I learned to nod and respond positively to Dale’s memories. However, I was slow to join him in his happiness. It felt like our intertwined lives were being torn apart and taken in different directions.

In my mind’s eye, I could see the disease separating not only once-connected cells in the brain, but also much that had knit us together as a couple over the years. Our shared history—created together over decades of living and working together—was unraveling, disappearing.  

That which was a gift for Dale was a thief to me. 

How to reconcile these? Perhaps there is no way. They stand side by side in contrasting tones like so much on this journey: gratitude alongside grief, presence next to absence, moments of joy within the sorrow of decline. And I stand inside each paradox, mourning the losses…railing at the thief when I need to…and celebrating with gratitude the gifts where I can.

Early Signs

To most people, Dale seemed just the same: talkative, smart, friendly, warm, funny.

The first signs of the disease were subtle.

I remember being at a reception for a clergy friend of ours. Dale’s diagnosis was very new, and only those closest to us knew. A long-time friend greeted him and asked, “How are you, Dale?” He replied, “Well, I’ve got Alzheimer’s disease.” Knowing that Dale had always enjoyed teasing, the person laughed a little and said, “No you don’t. You’re joking.” Dale continued, “No, it’s true. I was just diagnosed at Emory. I’ve got Alzheimer’s disease.” The person was shocked.

That response became common as Dale shared the news with others. Even after we had moved into a retirement community and Dale had undergone brain surgery as part of a clinical trial, many seemed doubtful that someone with Alzheimer’s disease could acknowledge it and look as good as he did. “He seems fine to me!” is something I heard more than once.

I struggled with my response to these comments because to me, each disease-related change was jarring and heartbreaking, no matter how small. Dale-with-the-excellent-memory, the one who could always win at Trivial Pursuits: had already lost understanding of our finances; was having difficulty organizing his sermons; was forgetting whole conversations; was getting lost in his hometown.

For me, the early unfolding of the disease was…

… like listening to an orchestra play a favorite piece while musicians begin putting their instruments down one by one…

or

…like noticing the first blush of red on a leaf as summer draws to a close…

I longed for the melodies I no longer could hear, for the full sound of the whole orchestra. I dreaded the winter cold that was coming our way. The loneliness and grief of the journey had begun.

During this time, I came across a quote by Julian of Norwich:

“If there be anywhere on earth a lover of God who is always kept safe,
I know nothing of it,
for it was not shown to me.
But this was shown: that in falling and rising again
we are always kept in that same precious love.”

Surely, we have fallen and risen over the years of this journey. And just as surely, that same precious love, manifested and expressed in countless ways, has kept us both. The grieving is ongoing. So is the gratitude for the love that keeps us.