Friday, 9 March 2018

Learning to "Play Along" in the Role of Dementia-Challenged Caregiving

The old man's most evident trait, perhaps that which best defined him, was his talent for comedy and storytelling. He had an exceptional, even extravagant at times, sense of humor and comic timing. Like an ambush, swift and unexpected, his humor could often cause a spontaneous eruption of laughter. At other times, his words could sting painfully like darts or biting insects, leaving scars or open wounds.

In the early 1990's the old man was diagnosed with two forms of cancer, a condition further complicated by rampant dementia. A younger son, his wife and sister, assumed the father's health and emotional care. The hospice episode lasted a lengthy 19 months, prompting re-certification not once but twice.

He -- the dying and cancer-afflicted old gentleman -- was called Joe by family and friends. He was a university educated lawyer who spent most of his career as a Special Agent of the Federal Bureau of Investigation, achieving a degree of fame and many service awards and commendations over the course of his 25-plus-year career in the Bureau. Whether he was proud of it or not he never said, but a certificate of commendation from J. Edgar Hoover hung on a wall of his basement bar, and remained there until Joe and his wife traded their large, two-story family home for a more manageable condominium, living spaces confined to a single floor.

As an FBI agent, Joe served in Washington, DC and Chicago, before eventually being assigned to the Milwaukee office. There, during the final years of his FBI career, due in large measure to his entertaining personality and his ability to hold an audience, he became chief teacher and trainer of police and sheriff's departments throughout Wisconsin and the Midwest, through which his students gained investigative dexterity in the FBI method.

As Joe reached his mid-80s, disease and dementia became his defining characteristics. In his decline, dementia stole his short-term memory, and behavioral episodes -- some of them highly amusing if challenging and exasperating -- began to paint the final landscape of the inexorable father-son journey to the end of the old man's life.

As one of the principal caregivers, the son became identified by his father's wild imagination -- variously cast as a fellow FBI agent, a long-dead brother, an accomplice to an implausible gun battle -- all born of the father's knotted ramblings. He would call his son at three or four in the morning in his role as intrepid FBI agent. The dialogue would go something like this:

Father -- "What's your assignment today? Robbery? Murder? Surveillance? Commie infiltrators? Who's your partner? What squad are you assigned to?"

Son -- "Yeah.. surveillance at the Country Grounds. Possible commie infiltration. Don't worry, we'll be vigilant. Agent Bodkin's my partner. Squad MI-25... "

If the son hung up on the old man, or told him he was delusional or dreaming or he should go back to bed, Joe would simply call back five minutes later, again and again, and so the son learned to "play along," to accept the assigned role.

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