A Parallel Universe: Alongside Dementia/1

By Susan Lyons for The Little Old Lady Stays Put (or doesn’t) blog

Dementia, a terrifying term, is a condition which more and more of us are experiencing first hand as life expectancies increase. Susan Lyons is a longtime journalist whose life has been rocked by this scourge as her much loved husband’s developing cognitive decline permanently altered her daily routine, as well as her broader perspective. This column will afford her a venue to share her insights into caring for him — as well as for herself — during this difficult period of their lives.

Susan Lyons’s work has appeared in The New York Times and other northeastern newspapers. She was an award-winning senior reporter for The East Hampton (N.Y.) Star for 10 years before she and her husband moved to Charleston, S.C., where she continues to write and edit on a freelance basis as her personal life allows. LOL

The morning was mild on the Saturday after Thanksgiving and the sunshine beckoned me outdoors to refill the little vase on our dining room table where four-day-old blooms had tired. The vase was a gift years ago from a dear friend, and I think of her whenever I use it. It is the perfect size for the delicate purple lantana and periwinkle plumbago that still color my yard this time of year.  Having my pick of flowers in late autumn is one of the joys of living in the garden-infatuated city of Charleston, S.C., and part of what inspired me to move here with a new husband after more than 60 years as a northerner.

Richard and I met when he was somewhat farther along life’s path than I, but the 15 years between us seemed less important than the commonality we found as journalists eager to explore the world – and conquer the weekend crosswords. We each loved French food, American music, original thought, the stuff of nature and, in time, one another.

Today, the years between us matter more.

Today, Richard won’t notice that I have refilled the little vase, even though he will be at the dining room table most of the day reading and rereading a collection of newspapers. He still notices if I don’t, though, sensing something missing if flowers are gone from the table, or the mantle. Is that just a man-thing, I wonder, or another sign of the invisible, unpredictable, unwelcome condition that has grabbed hold of his mind, and our lives, for some five years now.

Every day I ask myself 100 questions like that: Is his reaction to this or that a guy-thing, a Richard-personality thing, a “normal” aging thing – or is it the dementia marching on?  The answer is pretty clear when packaged cookies turn up in the freezer. It’s clear when, in the space of five minutes, he asks three or four times, “Is it cold out today?”

Actual memory loss is only one effect of vascular dementia – medical-speak for the mini-strokes that clog his brain’s blood vessels. Undeniably, it is the fog of dementia when, out of the blue, the atmosphere bristles with tension over the smallest decision – when to leave for a movie, which herbs to add to a salad.  It is also the culprit that makes the television remote control too complicated, the automated phone message from a doctor’s office too confusing, the checkbook impossible to manage, and sometimes, the passage of time unfathomable.

And it is unremitting. This is a man, who for half a century filed stories on the most complicated political and scientific subjects for international wire services and national newspapers; today he cannot remember who is running for president.

Yet (at this stage of life, isn’t there always a “yet?”) there is still much to share. Last week we delighted, together, at three terrific movies at a local French film festival. A few evenings later, our public television station aired a Motown Sound look-back, and we rocked, together, in our living room. As he does frequently, Richard recalled an interview he had done as a young reporter for the Memphis (TN) Commercial Appeal with a “genuinely nice young man” named Elvis Presley, and, claiming bragging rights, spoke as though it had happened the day before yesterday.

On Thanksgiving, because it is increasingly difficult for him to manage visitors or socialize in a group, we agreed on a seafood dinner at a cheery local eatery and thoroughly enjoyed a hearty Bouillabaisse, chatting intermittently with the couple at the next table. A stress-free Turkey Day.

Stress. That is what this is often about, big time. Stress, above all except the sadness. For dementia in all its forms, most often as Alzheimer’s, carries an acute poignancy for those who care, and caregive, playing out, day after day, as something now known as the long goodbye.

This is just the first in the series of articles by Susan Lyons for The Little Old Lady Stays Put (or doesn’t) blog. You could read the rest and more wonderful posts by visiting Jacqueline Herships’ The Little Old Lady Stays Put (or doesn’t) blog Susan can be reached personally at amagansue@gmail.com

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