Use it or lose it

At some time I learned to tie a necktie. I recall going to a photograph’s studio, ahead of my senior year of high school. As my family knew, I rarely smiled on command. And back in eighth grade, the girls who hanged out with me found me “too serious.” By the time I was ready to enter my final year of high school, my studio portrait showed me as a brooding eighteen-year-old. All of my life,

I have been intense.

Why did I bring this up? Because if you have early-onset Alzheimer’s, it’s worth doing anything to slow down the disease’s progress. Just a few days ago, I had seemed to have lost my ability to knot my tie. In retrospect, I probably overreacted. There were other times that it took me very long to make the knot. But this episode is the one that spooked me. When I said “spooked,” what I really meant, was this was the longest time I went between not dealing with my neckties.

And, culturally, the necktie has been on the wan. Back in 1984, when I was in my first full-time reporting job, I was expected to wear a tie even in sweltering humidity. I recall one of the local officials in the town being surprised that my editor expected me to wear a tie in such oppressive conditions. But the question is how often should I tie my? Every three days or four days? That would seem reasonable. But there are other realms in my life  in which I want to maintain. Just a couple of days ago, I was struggling to insert my lap and shoulder strap and lock me in. This, of course, is the way that toddlers are handled by their parents. And I need go back to the 2018 Ride to End Alzheimer’s, when I realized that that I was struggling to pin my ID number. I had to ask my riding partner, Matthew Abbate, to fulfill that this task. This is an example of the failure of my small-motor skills.

And in the years ahead,  I will be busy cataloging  my symptoms, until the lights start being turned out, one by one, until I approach that dark realm, my facilities steadying waning. My projection is that I will live for many years, on account of my good physical state. Most likely, “aphasia,” the loss of speech, or the inability to understand speech, will be my final destination, preceding death.

Learning to speak

When Joanne Koenig Coste published her book, Learning to Speak Alzheimer’s, in 2003, most doctors still regarded the condition of a natural progression of aging. The foreword of the book, written by Dr. Robert N. Butler, made clear that Alzheimer’s had its own pathology.

 “Up to that time “senility” stood for all forms of dementia, from standard late-onset form, and the panoply of similar dementias, including frontotemporal dementia and Lewy b0dies disorder.

Koenig Coste learned the burdens of Alzheimer’s first hand when her husband became afflicted with the disease. Support groups were rare. As early as 1971, Koenig Coste’s husband was showing obvious  signs of dementia. Of course, few people were calling the disease by Alzheimer’s disease. One durable euphuism was “hardening of the arteries,” making the disorder sound like a circulatory problem. Koenig Coste herself at the time, described her husband’s as innocuous. But two years later, a major stroke incapacitated Koenig Coste, throwing the family’s finances into chaos, “replacing Brooks Brothers suits with sweatshirts, which soon were stained with food.”

The burden was too much for her. The family was a large one, and there were children spaced out in regular intervals, four in all. “My husband kept opening the door to go outside—as if to escape from what from what was happening to him….I realized I had to act—proactively, positively and, immediately.…before my husband and son got lost.” At that point, Koenig Coste, drew up a plan. Features included securing the house, for both the young children in the home, as well Koenig Coste’s husband. Another set was termed of rules was titled “Know That Communication Remains Possible.” Another commonsense approach was termed, “Focus only on Remaining skills.” Koenig Coste noted, “Help the patient compensate for any lost abilities without bringing them to his or her attention. Another significant tenet was, “Live in the  Patients’ world—a variant of “the customer is always right.” And during this era, she was raising four children, ranging from four to sixteen.

In an early chapter of Koenig Coste’s book, she dramatized a confrontation between a young nurse and a patient, Mary. The nurse, Claire, called for help. “For the rest of the morning, the staff restrained Mary with an antipsychotic drug.” These days, most nursing homes use the technique of “reality orientation.” The rationale was quite transparent. Sadly, “the primary effect of forcing Mary to ‘face the truth’ of the death of her mother’s decades ago, led to an escalation to in her negative behavior. And just to be clear, let me define “habilitation”—an approach to caring for a person with some form of dementia. “Dignity intact, free from medical or chemical restraint, Mary sat back with her coffee and awaited for her friend’s arrival. Thoughts of her mother faded.

Under a header, “Focusing on What Remains,” Koenig Coste commented, “Family members often reported to the doctor or nurse what is called ‘excess disability.” What does this mean? In the parlance of Alzheimer’s, this problem, according to Coste. Most relevant for me is Chapter 5, which is titled “Seeing the World from the Patient’s Perspective.” After all, her husband died from the disease without much resistance at all. But what separates my experience Koenig Coste’s husband is a vastly different experience. One, exceedingly swift, like quicksilver; the other plodding. In chapter 3, the focus was on developing a care plan. One item included, “Is the person with Alzheimer’s doing well? Having regular sexual intercourse, if desired?” Under “ Social,” Does the person seem well-balanced?” Is the person’s emotional and spiritual needs being met,” in or out of a church or other house of worship? As Koenig Coste puts it, “Spiritual needs may range from attending religious services to feeding the birds: whatever spiritual sustenance maintained her before the disease began.”

A key word for this book is habilitation, defined as an approach to caring  for a person with dementia in a progressive way. But keep in mind that this book was published in 2003, more than fifteen years ago. So, some things may be somewhat dated. But what the author did, back then, is remarkable. By documenting patients’ behavior carefully in a thorough fashion, the author collected clues that would illuminate the next generation of caregivers and care partners—the  world of Alzheimer’s that my cohorts and I are living in today.