If you don’t know where you’re going, how will you know when you get there?
We had no idea where this day would place the new pin on our existential map. But she clearly did not want to be there that June afternoon in 2021.
We were told to expect the bundled tests to last more than 3 hours. That her neuralogist had ordered this grueling challenge of her memory was to her a condemnation of her personhood and put the bull’s eye on me as the enemy. “Why do I have to take these tests and you don’t?”
As we approached the day, we had repeated identical “discussions” about WHY this testing was necessary but she mostly wasn’t remembering the answer. And when she did, she wasn’t buying it. Her honor and character were being attacked.
This messenger and conveyor of inconvenient truths has been shot at the gate so very many times in the years since.
WHO SHE HAD BEEN
She rehearsed a rosary of former pharmacological memories and status among her peers, of being able to problem solve and help the medical staff and patients in four area hospitals over the years. That was real, once.
Now, things were falling through the cracks.
Familiar tasks like baking cookies took far more time and gave her little pleasure and a lot of angst.
The recipe called for sugar but she used salt.
She was not sure afterward who she had lunch with or what was discussed.
She started the book of the month I had ordered for her and met with her book club but had me print a one page summary before the meetings.
Every other day, something went missing. Glasses. Car keys. Purse. No one must know.
She had always been an extremely private person. Now she was aggressively so. The draw bridge came up and moat filled with alligators.
My mother, who spent a weekend or two a month at our place over the course of this decline was the only “outsider” to observe these changes over time. And so mom joined the enemies list.
That extra tension between the females in my life had done nothing to help suss out the cause or cure of increasingly apparent lapses.
TRAJECTORY OF TEST AND RETEST
The original doctor’s office mini-test in January 2021 lead to the neurologist’s order for a big battery of tests in June 2021.
That first testing would establish a baseline.
The results: deficits of working memory and executive function. Mild Cognitive Impairment SLASH Alzheimers. The jury’s verdict was vague, the conclusion inconclusive. But it was a starting place–testing better done years earlier but here we were finally with a reference point. A pin on the map.
The second testing in June 2022 would show us any pattern of change. I held some hope that this might be nothing to worry too much about. But NO.
The second time through the same test battery showed significant declines and the diagnosis was once again MCI/ALZ. Mild cognitive impairment AND/OR Alzheimers? This was confusing and I needed clarity in the worst way.
Before we left Roanoke for Floyd after the second test, I requested a meeting with the neuropsychologist. What did this mean? Where would this lead? What would happen next?
1) the decline was significant.
2) we would likely need memory care in three years, the medical best guess; and
3) we were on our own. Sorry, this office only tests. And there is the door.
Ann told me before we got to the car for home in June of 2022 that the doctor was a quack and the tests were silly and she had not really treated them seriously and just rushed through to get it over and go home. Even so, she thought she had done really well on the tests. What was all the fuss about?
NEXT STEPS: YOU’RE ON YOUR OWN
Sorry this office only does testing.
I was gobsmacked. I held nothing back in venting my disappointment with this glaring discontinuum of care.
The neuropsych doctor understood my frustration and agreed this was a gap in the system. But she could offer no more than to suggest I contact the Alzheimers Association.
With this more certain diagnosis now of progressive and untreatable cognitive decline rerouting our future, the road ahead held challenges we had not imagined and could not navigate around to reach the second half of our 70s.
It was certain that we could not expect to find health and housing for these needs in Floyd County, where we had been a part of the community for so long, and where I always thought we would live out our lives.
The diagnosis of Alzheimers falls on TWO humans…
Unlike most medical pronouncements for the future health of an individual, Alzheimers casts a long shadow over both the individual facing cognitive decline and the caregiving partner who embarks on a demanding and emotionally taxing journey alongside them.
– Fred First is an author, naturalist, photographer watching Nature under siege since the first Earth Day. Cautiously hopeful. Writing to think it through. Thanks for joining me. Subscribe to My Substack HERE