The Tragicomedy of Errors

How Sarah Is

Of all the existential questions I’ve pondered in my sixty-one-and-a-half-year journey through life, this is the most difficult I’ve yet addressed: How’s Sarah? The query comes once or twice a week.

How’s Sarah? I am never sure how to answer because “She has dementia” sounds so stark, though honest. Even people who know that yet ask, How’s Sarah? Maybe they harbor a hope that, like the flu or cancer, one can recover from dementia. No honest answer offers any such hope. More likely, these friends are marking Sarah’s “progress,” which I answer in such manner as, “Well, this past weekend she couldn’t remember how to plug in the iPad, so that’s like another…” I never fill in that blank.

Another what? Another skill swept into the murky netherworld of her brain. Another piece of long-learned knowledge lost. Another step toward the day when she’ll need constant watch. Another degree in the ebbing of our lives to when our marriage vanishes in her mind and she becomes my wife only as a physical and legal entity. I don’t fill in that blank because I’d like to keep my head in the sand a little longer, if you don’t mind.

Some people, I grant, are not certain of the final diagnosis or may still believe that the diagnosis was wrong because, without 30 years’ daily experience for comparison, they think she behaves normally, if a bit ditzy. I ran into some neighbors at the supermarket the other day whom, with our mutually busy schedules, I hadn’t seen in a while. Surprise followed by joyful greeting and then, “How’s Sarah?!” I tried to maintain the mood of the moment. “She’s doing OK, her spirits are really high,” I said, beaming with the great news I could share: “The Johns Hopkins Memory Clinic appointment went well, and she got her PET scan scheduled for Friday!” The appointment did give us some clarity we’d been seeking, and a test scheduled within two weeks is the speed of light for Johns Hopkins, a fist-bumping moment for us when I nailed it down. The memory clinic, however, is not where patients find out whether or not they have dementia but what kind of dementia and whether its progress can be slowed, the purpose of the PT scan. My gleeful news froze my neighbors’ faces before their smiles dissipated. “Let us know if you need anything,” the husband said, genuinely worried. I assured him I would, and now in solemn moods, they headed into the produce section while I continued to the bakery. (The good news was not only relative but premature: On the eve of the PT scan it was canceled because our military insurance wouldn’t cover it; we are appealing that decision.)

A related form of the How’s Sarah? quandary is addressing the topic with new acquaintances. Meeting new people, I inevitably talk about my incredible wife. Even on those rare occasions when I’m with a newly acquainted woman who shows some carnal interest in me, I blab on and on about my great married life: I can’t help myself. My current job as editor of the National Commission on Military Aviation Safety includes traveling across the country visiting military installations. If I get in conversations with anybody, the fact that my wife is a retired Air Force maintenance officer comes up in less than five sentences. This happened on my visit to Fort Rucker, Alabama, last week, when my new acquaintance asked, “Is she still working?” I could have just left it at “no,” but I’m still new at all this and braked the conversation with the three-word truth. I’m also encountering people who worked with or for Sarah during her military and post-military careers, including an Air Force chief master sergeant who told me Sarah was his first commander. “How is she?” he asked.

The most difficult situation for the How’s Sarah? question is on the phone in my home office while Sarah sits at her desk just a few feet away. Hearing the query, she turns to see how I answer. She knows I’m pathologically honest and will perhaps hear the truth that either she thinks I may be hiding (I’m not) or that she has forgotten. “She’s doing OK,” I say, and let me here define OK as meaning the dementia-driven disintegration of her memory and cognitive capabilities is noticeable but still manageable. Depending on how much the person knows about Sarah, I’ll explain that she definitely has early onset of dementia, but that her disposition is great, and she is handling her situation well. I’ll look over at Sarah as I say this and receive affirmation in her smile. Early onset is a relative term, too. While we’re just months into the confirmed diagnosis, the actual onset was probably four years ago or maybe longer. The seizures that began in March 2018 and forced us to look into her cognitive faltering is a totally separate condition (and under control with medication).

Let's face it, though, the question How’s Sarah? is often a mask for what people really want to know: How’s Eric? The answer to that is an unequivocal "not well," though I try hard to equivocate.

If you have been following along this medical saga since the March 23 entry in my Shakespeare Canon Project journal or read my commentaries of the past year, you will see that I’ve broached this new reality with a dispassionate journalist’s attitude and a bravado built upon my personal and professional experience interacting with people who had Alzheimers (including Sarah’s mother) or brain injuries (including my father). You might also notice that my last update to Shakespeareances.com was November 24, 2019, almost three months ago and my longest absence from this site. In the months prior to my last posting, my work on the website was hampered by my overcrowded schedule working the travel-intense Commission job and freelance gigs I took on to shore up our stressed coffers. All that was on top of dealing with Sarah’s medical condition, not just the many tests, doctor appointments, and administrative matter, but also navigating this house-of-mirrors existence. About the time I posted my review/interview of DruidShakespeare’s Richard III in November, my workload had whittled away the “dis” of my dispassion and my bravado was stumbling on the uneven path I was walking. Then, the tide of truth washed away the sand in which I had buried my head.

Sarah holds the tiger ornament for the History tree, one of our grove of Shakespeare-themed Christmas trees in our library. That the grove comprises four trees proved problematic for her this past Christmas. Photo by Eric Minton.

First came Thanksgiving, cooking meals (Shakespearecurean recipes, of course) and putting up our Christmas decorations, including our grove of Shakespeare trees with ornaments representing plots, characters, and themes in the plays. With my work and travels, I had not spent more than a weekend at home with Sarah; now, over the course of four days, I felt like I was living The Comedy of Errors. I had become Antipholus and Sarah was something of a Dromio. Whatever I expected or told her to do, she’d do something completely different. We laugh at the confusion that the two Antopholi and Dromios endure in that play, but when you are Antopholus or Dromio, it is bewilderingly not funny. In the kitchen, Sarah could not remember where utensils were stored, and I couldn't find things she had put away in the wrong place. She forgot how to do tasks that were second nature, and she had trouble tracking recipes. Referring to the recipes, she would tell me "they say" to do this or that; since these are my recipes, I am they, and she wasn't remembering that.

Then came decorating. She was seeing some items as if for the first time. Our Shakespeare grove comprises four trees—Comedy, History, Tragedy, and a generic Bard tree—each with its own ornament box. We always decorate only one tree at a time. This time, when Sarah unwrapped an ornament she’d ask which tree it should go on. THE SAME ONE YOU HAVE BEEN DOING, I wanted to say, but I’d calmly reply, “The Comedy tree in the corner.” She’d say “Right,” and go on her way unfazed. How could I be impatient when it was obvious her mental slate was constantly being swept clean like an Etch A Sketch? But my concern was rising.

I should already have read the report of last July’s Johns Hopkins psychiatric test. Because of bureaucratic protocol, we didn't actually receive the report until the week before Thanksgiving. Sarah's primary neurologist summarized the findings for us in a gentle manner before handing us the report, but in his choice of words, I detected clues that her case was serious. Still, I didn’t actually read the report until after Thanksgiving and discovered that her dementia was far more advanced than I realized. The report also had this self-admission: diagnosis was difficult because her intelligence obscured the amount of deterioration that had been taking place. What seemed normal behavior for most people, including her neurologists, her husband knew was something to be concerned about. Tthe doctor's surprise was evident in the report. For my part, both my jaw and heart sank as I read the results from each test.

Christmas season was settling in, and realizing how much her condition might deteriorate in the next year, I set out to make Christmas as normal (i.e., special) as possible. In addition to putting out all our Christmas decorations, I baked more than a dozen batches of cookies (trying to get her help, but she couldn’t handle the mental pressure), spent evenings driving her around for her Christmas shopping, and managed her gift-giving plans because she had trouble keeping track. That I was still surprised on Christmas morning was a victory, but I was worn down and inextricably behind on my job and assignments. Plus, shelving my emotions had debilitated my own mental acuity, and the stupid choices I had been making through the autumn were now coming back to haunt me.

New Year’s Day dawned in the glow of a romantic getaway. Those high hopes crashed into a harsh reality when Sarah misplaced one of her three purses (why she was carrying three purses, I could never figure out). By dusk, after fruitlessly searching for the lost purse—it might be in the black hole that her closet has become—and totally ignorant of what was in that particular purse (Sarah couldn't remember), my tired, bewildered soul was on the verge of a psychic breakdown. With the car keys already in my hand, I had to talk myself out of jumping in the car and just keep goin’ like a river that don’t know where it’s flowin’. God, you hope the Abbess shows up and sets all the errors aright. I waited out the night, and when I woke up on January 2, 2020, I set to methodically piecing back together my life with blinders removed. Assignment by assignment, task by task, priority followed by priority, I got my professional life back in order. Grabbing the reins of harsh reality, I steered us down the legal path toward future security for her and readiness for me. Two of Sarah’s neurologists recommended she begin exercising and socializing more. She's begun taking walks when the weather is good, but socializing is difficult with me working and her not working (and most of our friends and all our family are not local). I’ve made a point of getting her out and about as much as I can, our neighbors had her over to their place for dinner while I was on the road last week, and this past Friday I renewed our season ticket plan for the Washington Nationals, a friendship-forming environment. We can’t really afford the cost—maybe our health insurance might cover it—but I’ve seen how much social interaction does help her mental state. We also got back to Shakespeareancing as part of Sarah’s socializing.

This commentary is being written over the course of the Valentine’s Weekend for a couple of key reasons. One is that I’m finally ready and as able as I can be (with more Commission travels and deadlines looming) to get Shakespeareances.com back on track. I’ve got three play reviews to write and post, two of those utilizing the new review/interview format I started with DruidShakespeare’s Richard III. Those products take exponentially more time to complete than my standard reviews, but they provide more depth to Shakespeareances.com’s mission. I’ve also set aside time today to resume updating Bard on the Boards. In fact, Shakespeareances.com is my devoted focus on this second day of the three-day holiday weekend. Tomorrow, we start taking down our Christmas decorations—yep; it might be April before the last tree goes down.

Yesterday’s devoted focus was—well, first let’s go back to Christmas Days 2019 and 2011. I’ve written about this before, but I want to establish the context for this weekend. Heading into 2012, the year of our 20th wedding anniversary, I used the 12 Days of Christmas to present Sarah a year of celebrating our primary “passions” month by month: on each of those 12 Days of Christmas over the 2011 holidays through New Year's Day 2012, I gave her a gift of clothing representing a month in which we would focus on activities tied to one of our shared passions. January led off with “Home,” and then came February with “Romance” (the month of Valentine’s Day, though we never celebrated that holiday because our jobs so often kept us apart on February 14). The remaining passions, in order, were Cinema (the Academy Awards used to be held in March), Shakespeare (for his birthday month), Eric (for my birthday month), Music, Baseball (All-Star timeframe), Travel, Food, Wine, Sarah (her birthday month of November), and Christmas. We repeated this formula for a couple of years, then decided to devote full years to a "priority passion." We randomly select the designated passion from a deck of cards on Christmas morning, serving as a Santa Claus gift for us. The first was Baseball, then Eric, then Shakespeare, and last year was Food. These Christmas morning selections have taken on a mystical value in that annually they prove to be the most suitable selections possible. The year of Eric came after the year of my father’s death and managing Sarah’s recovery from her heart disease and thyroid cancer, so it was good to focus on myself for a year. Shakespeare was the draw for the year I had already decided to pursue the Shakespeare Canon Project. Food fit in with our determination for 2019 to resume our Shakespearecurean enterprise. It's as if one of us had arranged to have the right card as the next in line, but I haven’t done that, and Sarah doesn’t even know where I keep the cards.

If I were cheating, I would have moved the "Sarah" card to the top for this year. Instead, the card Sarah drew and held up for me to read was “Romance.” The fates have proven to be more astute than my hope for the "Sarah" card, because instead of focusing on her, we’re focusing on our love for each other, in all its dimensions. With each passion, we each write down a “grand wish,” as far-fetched or extravagant as we want (like, say for the year of the Shakespeare passion, seeing every Shakespeare play at a different theater in one calendar year). Sarah’s wish for "Romance" is to spend the “perfect day” together. As she put it in writing: The perfect day would start by being well rested, sitting down to a good meal, and then continue exploring an adjacent area. Places to explore could be the Smithsonian museums, the Observatory or… At the end of the day we would go to dinner, followed by going home to relax and enjoy ourselves (ellipses in original). We’re aiming to do one per month, and the first was New Year’s Day. Oh, well! to that one.

I was ready to try again. I flew home from a Commission trip on Friday, fetched Sarah and the suitcase she had packed (she had forgotten what I had set out for her to pack, but I quickly tapped down my frustration as I saw her own frustration grip her constitution), and we headed for a hotel in downtown Alexandria. We celebrated Valentine’s Day (a first for us) with a special dinner, and yesterday had a “perfect day” swimming in the hotel pool, walking the streets of Old Town, and dining deliciously. We are now about to check out of the hotel and head home for a day of Shakespeareances.com. But first, let me ask Sarah a question: How’s Sarah?

“Sarah’s good.”

Eric Minton
February 16, 2020

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