By Allene Symons
Today A.J. asked, for the umpteenth time, “Why can’t we go to our restaurant?” meaning his favorite place, which happens to be shuttered.
“It’s closed, because of the coronavirus.”
“The what?”
“The pandemic. Coronavirus. Covid-19.” I repeat all three, hoping one will click. “Most of the nation is staying home, you know.”
But that’s a slip-up on my part, because my husband does not know. During the past month, while we’ve been sheltering in place, he has further lost his grip on reality. My husband has dementia. I am his primary caregiver.
And we are far from alone. Alzheimer’s afflicts an estimated 5.8 million Americans as of 2019, meaning that for many in this nation the incurable disease has overtaken a spouse, or a member of their close or extended family.
In our house, every day has become a Groundhog Day scenario of erase, repeat, erase. Inescapable news for the rest of us peels away from his memory. We subscribe to two print newspapers, and he pages through them but does not retain. Headlines do not sink in for this retired math professor and member of Mensa, nor do the top stories on nightly PBS news, though at dinnertime from habit he goes through the motions of watching.
There are several kinds of dementia, and all involve confusion and memory loss. A.J.’s affliction, however, is not the brand-name dementia of the better-known Alzheimer’s but the second largest variant. A.J. has Lewy body dementia, the incurable disease that afflicts 1.3 million Americans. One was actor Robin Williams. Undergoing the dreadful disease characteristics of confusion and paranoia led him to take his own life.
Paranoia permeates our household. My husband asks daily, “Who are you?” and I say, “I am your wife of 23 years,” to which he comes back with, “Not possible!” I bring out our marriage certificate, which he dismissed it as a forgery, “a swindle.”
Another hallmark of LBD is hallucinations. While we stay home, practicing social distancing as a Census-count household of two, we daily host a not-so-fun party of uninvited guests. The house bustles with so-called ‘phantom boarders,’ and to him they are real. No point in trying to dissuade him.
According to A.J., they arrive for meals, steal things, turn drawers inside out, appear outside windows. Sometimes, he says, they threaten him. They are of all ages and genders, former co-workers and girlfriends, people young and old, and some are family members long since dead. Sometimes he calls them out by name.
A.J.’s dementia began to appear around 2016, and as it progressed we gradually shucked activities in a list that sounds like restrictions from Covid-19. He stopped driving (not without a fight), and we gave up air travel. We stopped attending plays and concerts and movies for these became too complicated because of trips to the rest room and chances of wandering off in a crowd. We reduced our restaurant attendance to one place, his favorite, where the servers knew the situation, the place that is now shuttered.
Before March of this year, I didn’t imagine that I was practicing for home-stay confinement, then the coronavirus shackled us further — yet by a small degree. Since then we venture out for an occasional drive-thru lunch or a mid-afternoon Starbucks latte and petite vanilla bean scone.
But one thing hasn’t changed. We still take short walks in our back yard, and I say short, because A.J.’s gait is now affected by his illness. Once upon a time we were scuba divers, birders, hikers. Now, trails and parks closed? We couldn’t manage those anyway, not now.
Yet silver linings can be found almost anywhere, if you dig for them. The bright spot in our home confinement, before and during Covid-19, has been the monarch butterfly garden we’ve maintained in our yard for the past half dozen years.
Lately, the milkweed is festooned with a dozen yellow and black striped caterpillars.
And if you look closely you’ll see the surprise of little green chrysalises, like so many miniature celadon vases, dangling from branches, under window ledges, secured on a wooden trellis, attached by a short silken cord to the handle of a watering can or the edge of a brick. Within a week or so each one will emerge as an iconic orange, black and white monarch butterfly, offsetting the serious downside of our lives like some kind of miracle, a hopeful sign that in the larger scheme of things, life goes on.
Lives are in upheaval across the nation, but there is some comfort in knowing in your particular circumstances you are not alone. Parents know there are countless moms and dads who find them selves suddenly home-schooling. Couples with mandated work-at-home tasks on laptops and desktops know they are vying for focus in the limited space of a residential address, as are many others. I, too, know I am not alone. I am just one of the family caregivers trying to keep a loved one with dementia safe.
These weeks of further restriction with scant relief seems to be hastening my husband’s decline, but losing his grip on reality was inevitable. It might have taken longer, a reprieve for both him and our marriage thanks to a few more nights out at his favorite restaurant. A few more movies, where once seated he’d fall asleep. Still, we were together, a couple, almost like the good old days, before this home confinement hit, before they hit. I mean dementia. I mean Covid-19.
And now, when the phantom boarders start to crowd us, flouting the six-foot rule of social distance, I have begun saying, “Tell them to go. They are breaking the rules. The rules of the pandemic. The virus.”
Keep it simple, I say. Sometimes, briefly, it sinks in.
This is so wonderfully written from the heart. Thank you for putting into words what many others are experiencing and hopefully they will also gain comfort from knowing that they are not alone.