FRED FIRST: Lonesome Highway: First Steps

Sunday 6 Apr 2025 2:18 a.m.

What I want to write about here over the coming months will be harder than anything else I have written publicly. But the story to be told now has been the elephant in the room for years.

I am no stranger to exposure of life details offered to readers, both strangers and traveling companions looking over my shoulder since 2002. But this topic is the gnarly-est knot and a slippery-est slope. While it has been brooding over and hiding in the dark behind the conversation here for the past five years, I have not called it by name. But now, I need to shine the light into those shadows.

It is impossible to say with certainty where this backstory begins–to find that beginning edge of the unrolling narrative of a life and lives in an uncertain transition that tests our limits. But I knew at a gut level in 2018 that these inevitable changes would be coming. Understanding those givens made necessary the exodus from Goose Creek in 2020, and then lead to our eventual transplant across the country to continuum-of-care retirement in Missouri in August 2024.

Regular readers know that story. But there was always more.

CHANGE IS GONNA COME

When we first met with our realtor in early 2019, it was Ann’s memory issues (which she did not then acknowledge) in part that created urgency to find a more accessible place to live, closer to town, nearer to help from friends and neighbors.

And those friends and supporters often came for a porch visit on Rock Hill, four paved-road miles from Floyd until Covid closed the doors and left me mostly alone with the issues that would not disappear if we pretended they were only imagined. Those years, for all of us, were stressful. Dealing with loss of working memory added enormously to stresses of life under the vaulted ceiling on Rock Hill.

I wish didn’t but I need to write this chapter (having been granted Ann’s understanding and permission) but I do: For the good it might do me to face the overwhelm of my own thoughts and emotions; and for the possible benefit it might provide for so many age peers who already live with the threat or presence of dementia in their lives. It is devastating and without a cure; but knowledge is power of a sort, and any light is better than none.

WITHOUT CHART OR COMPASS

I hope the telling of this backstory and all I have learned and will continue to learn about Alzheimers and caregiving–will in some small way help someone else to navigate the uncharted future of their own or a loved one’s life journey.

Ample technical resources and personal narratives in dementia and caregiving exist (and I will share some of those I find useful) but my account has not been among them. If I can make myself send off this first in a series this morning, maybe the posts that follow will find the right recipients at the right time to make a small difference.

I don’t have more than a vague plan laid out for how to share this. Plans these days–well. Those don’t hold together any more, so I’m learning to not spend too many minutes laying out details and to trust the fragments will come together over time.

I hope to establish and stick with a title for these memory-related posts, with subtitles for the particular topic. Meanwhile I will continue posts from other parts of our lives in Columbia, Missouri as well, if I find the space to do so. But don’t be surprised if I go dark for weeks.

Point of view will be both objective and subjective because both facts and personal experience live together uneasily within the confines of a constant caregiver’s day, month, year.

GOTTA WALK THAT LONESOME VALLEY

I’ve learned a lot in the past five years of living with the hourly complications of memory loss. Daily there are lessons on patience, coping, mental health, marriage and the meaning of life that can only happen while watching a loved one go on living while ghosting away, day at a time.

I’ve become familiar with ambiguous loss.

I resist inking in expectations, but it could happen that whatever changes lie ahead will offer me more freedom and Fred Time than the past few years have provided– to engage, in this retirement community; to become involved in Columbia and Boone County; and with camera, notepad, hand lens and binoculars to explore in the local wilds. On the other hand, the details and demands of inevitable decline could smother any such hopes with a pillow.

Someone advised me early on that a writer should write every day; write from the heart; and write what they know. And persist no matter what, without hope and without despair. I try to walk that knife edge, and the writing may help my internal gyrocompass to go on spinning and keep me from falling.

Some of you know a bit of this chapter. It’s not a topic that comes easily into everyday conversation. But since daily writing began in 2002 I have not been given to holding back, and I have not been punished for my openness. Quite the contrary. And some of you are evidence of that relationship across continents and decades. Thank you.

And life goes on…