Lonesome Highway: Helplessly Hoping
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Lonesome Highway: The On Ramp April 20, 2025
Lonesome Highway: Hurry Up and Wait April 27, 2025
When we had two consecutive years of testing to compare in June of 2022, Ann had lost ground.
The ambiguous label MCI/ALZ had tipped away from simple age-related dementia and unmistakably toward the Alzheimers form. This one terrible fact set the course we must follow in what remained of our lives.
We would be walking every day into a fog of emerging necessity without guideposts.
An 8-page report of the tests came in the mail a month later. The summary explained that she showed profound losses of working memory and executive function.
The irreversibility of this form of dementia meant that those normal brain interactions increasingly fail until independence was no longer possible.
This would call for entirely other arrangements than the "aging in place" option some of our Floyd friends would attempt with their own more or less normally-aging but increasingly unreliable brains and bones.
And so, in June of 2022, with the cognitive crisis in plain view before us, I set about to learn all I could about care-partnering. I would take charge and structure life in our home and in our small town with the help of friends, so that Ann could continue to maintain some level of independence without putting herself or others at risk; or me in the rubber room.
(NOT) WORKING MEMORY
I now look back and see how little I knew then.
That ignorance briefly gave me false hopes. I thought somehow I could keep my finger in the dike and the flood might not rush in and carry us away.
My first false hope was that Ann could still build "cognitive reserve" through brain-stimulating activities like word finding puzzles and other eye-hand-brain exercises.
But we were too late in the game. She could not sustain focus and attention long enough to complete even the simplest crossword or color between the lines. Moving on then.
I would structure our schedule and make simple tasks into routines and create clear and simple patterns she could follow to stay on track and live an adapted but more or less normal life.
Not so much. Working memory is the temporary scratchpad of the brain, like a sticky note that holds the instructions for doing the next thing.
In the years before she agreed to testing, I noted these vanishing working-memory sticky-notes disappeared a time or two a week; by 2022, multiple times a day.
And for the past year, chunks of in-the-moment bits that would live in the working memory space never leave a trace. The eraser comes right behind the chalk.
EXECUTIVE (DYS)FUNCTION
This is a higher-order processing ability of the intact brain that involves movement patterns and pattern recognition and behavioral response. It takes working memory (if there is anything there) and creates actions that make sense in the context of intentions to get things done. Making the bed. Baking cookies. Grocery shopping.
When this connection is broken between these two brain modules, law and order break down. Planning is impossible. Tasks are not completed. Things are misplaced or lost every day and are more often dropped and broken or spilled. Conversations make no sense and humor is lost.
One of the greatest sacrifices because of this failed brain function was the end of Ann's driving alone; then the end of driving completely. Ann had a "soft accident" in town in August of 2023. No bodies or vehicles were dented or disabled. But it scared her enough that she has not driven since.
Herein lies the rotating vortex of open-ended loss of independence for the afflicted and increased dependence on the constantly on-call care partner.
Quality of life is erodes for both as the slippery slope continues at an increased pitch, never knowing the distance from the precipice.
AND NOW: ASSIMILATION
By November of 2023, we were looking at continuing care retirement communities. Such a place would provide initially for Independent Living and include Assisted Living/Memory Care on site.
Some of you followed that travelogue from there to here, but few then knew the backstory.
Even people in our group of friends and neighbors most did not know, and were puzzled over our imperative so suddenly to leave a place into which we had been so thoroughly and happily grafted for so long. Why not "age in place"? they asked.
But we pulled ourselves up by the roots because we had to go somewhere that offered both housing and healthcare for our age-related needs. Now we are thankful to have been in “full life plan” housing at Lenoir Woods in Columbia Missouri for eight months.
Difficult choices remain and fall to me—to make the best possible quality of life for me and for Ann, under the circumstances--even if our separate and different lives will be lived together here, apart.
When Working Memory Fails
Repeat questions because they forget they just asked.
Struggle to follow conversations.
Have difficulty remembering short lists or instructions.
Make errors in simple calculations.
Find it hard to plan and organize tasks.
Become easily overwhelmed by new information.
When Executive Function Fails
Impaired Planning and Organization: Individuals struggle to plan and organize even simple tasks. Multi-step activities like preparing a meal, managing finances, or following a sequence of instructions become increasingly difficult or impossible to initiate and complete.
Reduced Working Memory Capacity: While working memory is a core component of executive function, its decline in Alzheimer's further exacerbates problems with planning and organization. They have difficulty holding information in mind to execute steps in a task.
Loss of Cognitive Flexibility: Adapting to changes or shifting between tasks becomes very challenging. They may get stuck on a particular way of doing something and struggle to adjust if a problem arises or a different approach is needed.
Difficulty with Inhibition: The ability to control impulses and inappropriate behaviors weakens. This can manifest as saying or doing things without thinking, difficulty waiting their turn, or struggling to resist distractions.
Problems with Abstract Thinking and Problem Solving: Understanding abstract concepts and solving novel problems becomes impaired. They may struggle with reasoning, making judgments, and understanding cause and effect.
Decreased Time Management: Organizing and managing time effectively deteriorates. They may lose track of appointments, have difficulty estimating how long tasks will take, and struggle to adhere to schedules.
Impaired Initiation and Monitoring: Starting tasks (initiation) becomes harder, and they also struggle to monitor their progress and identify errors during an activity. They may leave tasks incomplete or be unaware of mistakes they've made.
Thank you for your writing, Fred, and your friendship. I so appreciate the story you are sharing of yours and Ann's experiences through this and I am grateful that you are where you are now.
Fred, you have prepared well for the events that are now affecting your life. While the tragedy unfolds, you should enjoy your outdoors and the emerging spring.