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.