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.
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