Dementia and Other Terrible Dragons We Can’t Slay

What caused Dad’s death?

I don’t think I will ever know for sure.

Nonetheless, it’s a question that randomly nudges me during my hospice’s Interdisciplinary Group (IDG) as we discuss our patient’s recent deaths.

I know when my father died: the sixth day of February, in 2012. I know where he died: at the care facility where he spent his final two years. Or the where of his death could be identified as a particular town within Sacramento’s metropolitan area. I once knew his street address and room number. I still know the zip code of where he died, since it was the same one he’d had when living at his suburban home of forty-plus years.

How did he die? His death certificate had a heart-related cause of death. How could Dad’s death not involve his heart? At ninety-plus, the hard-working muscle in the middle of his chest must have been exhausted after all those decades. But on dreary days in long meetings, I wonder if dementia murdered him. Yep, I wrote murder. How foolish and melodramatic! But with dementia’s reputation for cruelty and relentlessness, didn’t it destroy Dad’s life as if wielding a thousand, or hundred thousand, paper cuts? At first dementia’s intent and weapons were overlooked, but each cruel, insubstantial slice lead to his demise.

Dad had an ample supply of stubborn in his DNA. He avoided doctors like black cats or sidewalk cracks. Only one neurologist examined him. That brief, awkward visit occurred well after dementia (along with a cranky knee, hearing loss, prostate problems, and a legion of other lesser ills) had its hooks into him. With little enthusiasm, the physician prescribed additional medication and appeared relieved when we departed.

Which dementia stalked him? Not Alzheimer’s. Enough is known about that form of dementia to eliminate it as the prime “murder suspect.” In 2012, the year Dad died, Alzheimer’s ranked as the 6th leading cause of death in the United States.

I’ve read about dementia, during and after Dad’s dying. That solitary neurologist that we spent a handful of minutes with mentioned Lewy Body dementia (LBD). However, he did so without conviction. What about vascular dementia? Given some of my father’s symptoms I liked (though didn’t really like) the grim details of that disease. Of the identified dementias, it’s the second most common after Alzheimer’s and frequently “attacks” the elderly. While meeting with hospice colleagues at work, I learned about Pick’s Disease. Occasionally, one of our hospice patients has that specific dementia diagnosis. Could it be Pick’s that killed Dad? With my ignorant, lay perspective, I’ve studied LBD and vascular and Pick’s and more—all of them act suspicious, but the lack of evidence means they are like “persons of interest” rather than any of them being formally charged for the “crime.”

As with quite a few families—under hospice care or not—I will never know the exact cause of a beloved’s death.

Some struggle with this, longing to have exact words, a precise enemy. I can’t help but think of the romanticized ancient maps, where on the fearsome, unexplored regions of the world—according more to silly films than serious history—a warning was writ, “Here be dragons.” Just beyond our sight and knowledge, evil lurked. We want to finger a specific enemy. The murderer. The killer. The terrible dragon we couldn’t slay.

There are those who get upset if they don’t like the death certificate’s conclusion. Some causes of death could be deemed embarrassing. Would future generations exploring past family history be ashamed or offended by a death certificate’s declaration? Possibly.

Or we can be so convinced that (for example) the bad recreational drugs a loved one consumed in their youth, or the lack of caring for themselves in their “golden years,” or other excuses rooted in family conflicts, were the real causes of their inevitable last breath. A doctor may list a fancy reason on the certificate, but we know the “truth.” (And sometimes, we secretly wonder, didn’t they get what they deserved? Oh, how despicable we humans can be . . .)

I suspect certain families, given the choice, would prefer the ambiguous “natural causes” or “old age” as the cause of death for an elderly beloved. They were old. They died. Keep it simple.

Others never debate or doubt a death certificate’s veracity because the cause is clear. Our information about certain cancers is grimly precise or there’s also the obvious stumbling over a steep cliff or being one of the 35,092 accidental vehicular fatalities in 2015.

Many grievers will never know all the facts and details. But, for me, yesterday’s cause of death is never as important as today’s course of life.

Though dragons will always loom out there, what can I do now to honor the dead and support the living?

That’s a question I can answer.

(Hospice vigorously protects a patient’s privacy. I’ll take care with how I share my experiences. Any names used are fictitious. Events are combined and/or summarized.)

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