The Gift

The loss of daylight hours that November matched my mood.

The news came by phone from the neurologist at Emory: “The result of the spinal tap confirms the other testing we did and tells us what we suspected. It is Alzheimer’s disease that is causing Dale’s symptoms.”

There was strange relief in knowing. We had no other way of explaining the unusual changes. But alongside the relief was a sense of dread: we both knew what was ahead. We had already witnessed the disease take the lives of Dale’s father and brother. The news that we would now watch it ravage Dale’s brain, stealing his memories and abilities, was devastating to me.

Holiday activities took some of our attention, as did selecting a clinical trial to join. It helped to have something to look forward to and feel as if we could make a difference for others. Still, the diagnosis was a new reality and we were struggling to adjust to it.

Seated on the couch in our living room two months after his diagnosis, Dale felt he received a gift, an “epiphany,” as he put it. He told me about it and wrote the following:

“Happiness,
I’ve learned,
is a gift
that only each person can find within
and choose freely
to embrace daily
come what may.
Having found this inside job/gift
I’m embracing it for all it’s meant to be…
for all of us.
It’s God’s free gift, with no strings attached!”

I watched Dale’s attitude shift as he internalized this message. His deeper acceptance of our new reality helped me. If he could live this way with a disease that was to steal so much from him, I could at least lift my gaze and walk with him.

Years later, a friend noted Dale’s happiness and remarked that perhaps a seed was planted when Dale wrote these words. Perhaps. There surely are mysteries to this process. What does remain as the disease cuts its swath through the brain? Intentions, capacities, and memories are lost in such unpredictable and heartbreaking ways. I know that the light I see in Dale now—his big smiles, easy laughter, and warm greetings—could be lost, too, at any moment. So, I am grateful for his happiness now, for whatever reasons it remains. May I learn more and more to embrace the gift for myself, “come what may.”

Postscript: Dale received his “epiphany” in January 2011. Here is a link to a video of Dale reading it in November 2015 during an interview conducted by Bishop Kenneth Carder for a Lutheran Theological Southern Seminary course on dementia: https://youtu.be/Sff-fgZ8Des

About this Blog

I have been keeping a journal since my husband Dale was diagnosed with Alzheimer’s disease in 2010. My writing has helped me express difficult feelings, keep track of experiences, and cope with the innumerable changes that unfold with the disease. Recently I began to wonder whether my journal could be shared in ways that might also help others facing similar challenges.

As I reviewed the pages, I saw that I had used many images to describe what I was witnessing and feeling as Dale’s disease progressed. This was no surprise really, since images often come to me much more easily than words. I decided to try telling our story by pairing visual images—my photos—with reflections—my writing.

It is my hope that by sharing this way, I am carrying forward what Dale began when he accepted his diagnosis fully and openly. Because he had Alzheimer’s in his family, Dale had thought deeply about what he might do if he, too, had the disease. He sought an evaluation early, and when diagnosed, faced the disease head-on. He entered a clinical trial that involved brain surgery, not knowing for four years whether he had received treatment or placebo. Until the disease removed the memory of its presence, he told everyone he knew that he was living with Alzheimer’s. He walked bravely with that knowledge, hoping to reduce the stigma of the disease. He has been my hero all along the way.

Dale is now in middle stage Alzheimer’s. His verbal language is very limited and retention time is down to seconds. He requires guidance throughout the day and assistance with self-care. What he doesn’t need help with, though, is finding joy in the moment. He LOVES greeting and being with people, singing, dancing, and spending time with our dog, Lucky Day. Although he no longer has access to the memory of his diagnosis or understands what Alzheimer’s disease is, he continues to be an example of someone living fully with “what is.”

As Dale said in a video filmed in 2015 for a seminary course on dementia that we were a part of:

“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.”

Me, too, Dale. Me, too.