Losing Casablanca
The year a comb-over demagogue ascended to the US presidency, the year Hurricane Maria decimated Puerto Rico and the demagogue threw paper towels at the suffering masses, the year bees invaded the walls of our 1930s shingled cottage and wouldn’t go away, and a bee expert told us we would have to caulk around every one of the hundreds of shingles to cure the infestation—in that same year of the seemingly impossible, a neurologist at UCI Mind diagnosed my 66-year-old husband with a degenerative brain disease called Primary Progressive Aphasia.
This diagnosis did not come unforeseen. For over a year, Andy paused during his spoken sentences, struggling for a word, almost always a noun in the position of object. “I need to get a new one of those, you know, what you put on the end of a hose to direct the water?” Nozzle. Or “I think we should put a different plant in there, maybe a, um, white flower, smells tropical.” Gardenia. Sometimes he would halt midsentence to put both hands over his forehead, as if trying to encourage or warm up his brain. On many occasions he settled for an inexact facsimile of the word, like bottle for jar or flat place where you store stuff for shelf.
We were both in our mid-sixties, and we and nearly all our friends of the same age had moments where words hid themselves from us. The name of the country western singer who was also a Rhodes scholar. The little Mexican restaurant with great pozole verde. The substance in our tissues that can be good and bad and is supposedly a predictor of heart disease. Most of us, even Andy much of the time, could come up with the first letter or two of these nouns, but not the rest of the spelling. It took me an hour to arrive at the word cholesterol. I kept thinking carbohydrate. This sort of occurrence comes with advanced years, along with venturing into a room of your house with a singular purpose, like seeking a hairbrush, then forgetting what you intended to do until you’ve left the room in frustration. Or forgetting where you put your wallet or car keys or cell phone.
It took us an entire year and then some to concede his was more than an age-typical lapse in language fluency. He cradled his head more frequently, even in social situations like parties and dinners. Friends and relatives begin to notice and ask about his health. On the recommendation of my brother and brother-in-law, Andy visited a clinic where he was evaluated for sleep apnea, and began to use a CPAP mask each night. We both noticed improvements. He did not grasp for words as often, and if he did, he found a suitable replacement with barely a missed beat. Walkway for sidewalk. Cutter for knife. My brother’s daughter for my niece. These substitutions were not perfect, we both knew, but they were an improvement over the abrupt, obvious breaks in conversation, palms to his forehead, and we held to the hope that apnea had caused his problem.
For a few months, we floated along in our deluded bliss.
Then, during a holiday visit, my brother and sister-in-law observed that Andy’s word-finding ability had worsened. They hadn’t seen him for six months or longer. They are trained in fields related to Andy’s difficulty: Cathy is a linguist who specializes in language and literacy education, and Matt a speech pathologist. They did not live with my husband every day, and weren’t accustomed to his spoken glitches as I was. Also, a friend and teaching colleague of mine made the same observation. She and her husband had a close friend recently diagnosed with early onset frontotemporal dementia. He’d found help at UCI Mind. My friend recommended we seek a consultation.
The adult daughter of an addict mother, I understood denial. It was like pressing your foot on the passenger-side floor and believing you’d help the driver stop the car. There is something sweetly optimistic about denial, but it’s still wrong. Andy is my third husband. When I met him I was 49, and had finally figured out that the best relationships are between two people who want the best for each other. Though I had wanted the best for my previous husbands, they were threatened by my ambitions, thus their feelings for me weren’t mutual, and I was angry and thwarted. As soon as I met Andy, I realized what it meant to be a partner and to trust. He was funny and smart and sincere, and he could also call me out on my most egregious bullshit. He once told me not to be such a teacher when I was speaking to him. That stung, because one of my myriad flaws is that I can easily turn into a bossy, finger-wagging lecturer. I come by it honestly; I spent thirty years as an English instructor.
Almost a decade into our relationship we bought a cottage a block from the sand on the Balboa Peninsula, and three years after that we married, certain we wanted the rest of our lives spent with each other.
Yes, as we celebrated, in our denial, how many okay words he found to stand in for the words he couldn’t remember, it was sweet. And also wrong. I recognized how wrong it was as we walked along the beach, and Andy said, “Look, they moved that house thing away from the water and put it by the parking lot.” The “house thing” he referred to was a lifeguard tower.
“What ‘house thing’?” I said, and hoped he’d come up with the accurate noun phrase. He’s lived at the beach over half his life, the guard towers fixtures in his environment.
He looked at me for a bereft moment then said, “I know what it is. I can’t find it.” He, a word puzzle and parlor game enthusiast, asked me to give him clues.
Right there on the boardwalk, I acted it out in charades. “First word, first syllable. Sounds like,” then I pointed to myself and my wedding ring.
“Marriage?” he said. I pointed more insistently at myself and my ring; eventually he guessed wife, then life, then lifeguard came to him. But he couldn’t retrieve what the actual structure was called.
“Sounds like,” and I gave the Black Power salute. He latched onto the word power, then went through the alphabet: bower, cower, dower, etc. but completely skipped over tower. He said finally, “Lifeguard station. That’s the best I can do.”
“That’s correct. Just another way of saying ‘lifeguard tower.’” But his face showed no satisfaction in landing on a merely acceptable turn of phrase. He looked pained. And I was equally stabbed by how he had, essentially, asked me to be his teacher.
UCI Mind is a bright, modern facility on the Irvine campus. The receptionists and assisting medical professionals are congenial; the doctors are researchers. They are experts in their fields, data- rather than patient-centered. Dr. J, Andy’s neurologist, is both an MD and a PhD. His PhD is in Primary Progressive Aphasia. We were matched to him, I believe, after I wrote an email to UCI Mind describing Andy’s symptoms. He was exactly the expert for us to be with, but now we had to learn to work with an expert, which is not as easy as you might assume.
The small examination room was arranged so that Andy and I sat in stationary chairs at walls on opposite sides, with Dr. J on a rolling chair in the corner scooting out and between us. Educated in Tehran and Cambridge UK, he spoke with a precise English accent. He was slight, of average height, graceful in his movements. After greeting us and inquiring how long we’d noticed symptoms, he administered a brief oral exam to Andy. First he asked Andy to subtract 3 from 100, 3 from 97, 3 from 94 and so on, which Andy was able to do without pause or error, faster than I could. The doc recited a list of words—face, church, velvet, car, red—then called on Andy to repeat 2 or 3 of them sporadically throughout the test; Andy only remembered one. Dr. J said, “If Jack was kissed by Jill, who did the kissing?” Andy had no problem with the passive voice construction of that item. Another question, “If I say Bill will be upset if Susan goes to Paris without him, who is planning a vacation?” did not stump Andy, who then was asked to draw the face of a clock showing 10 past 2 o’clock. He did that quickly and accurately, too.
My first cause for alarm happened when Dr. J showed black and white line drawings of a rhinoceros and a camel, and asked Andy to name the animals.
Andy could not.
When the test concluded, the doctor said, “It appears you have Primary Progressive Aphasia. It’s degenerative, and there is no cure. You probably have five years before you’ll need care.” He excused himself to go get some paperwork for further testing, and closed the door behind him.
We stared across the room at each other. Andy broke into sobs. I walked over to rub his back, wondering why the room was set up in a way that separated couples.
The doctor returned with orders for an MRI, a PET scan, and blood work. He shared Andy’s vitals with him, and Andy, trying to be chipper, said, “Wow, my heart speed has improved. It’s usually much faster.”
Dr. J looked at me. “You see, he said ‘heart speed’ instead of ‘heart rate.’”
I nodded, and felt like a traitor.
Andy felt dismissed, and said so on the drive home. “He spoke to you more than me, as if I’m already gone. I’m just a case to him, not a person.”
I caught his point. Dr. J had made more eye contact with me and directed more statements and questions my way, except during the test. But Andy had previously visited at least a couple of erstwhile neurologists who examined him for strokes or mini-strokes and threw up their hands, claiming he seemed fine. This doctor was an authority, who knew that amyloid plaque deposits—the same type that cause Alzheimer’s disease—cause Primary Progressive Aphasia, the logopenic variant, which Andy has, only they reside in the language center of the brain. Stroke victims can recover from the aphasia they suffer. PPA patients cannot.
“Wouldn’t you rather be with a doctor who knows this stuff intimately, than someone who doesn’t?”
“Not if he treats me like a statistic,” Andy said.
Thereafter he contacted his cousin who is a pulmonologist with some sway at UC San Francisco. The cousin procured a little-known phone number that would put Andy in touch with the UCSF Center for Memory and Aging. As far as I could tell, it was a sister program to UCI Mind, and they shared research developments, but Andy believed UCSF would be better than the center we could drive to in twenty minutes. It’s a seven-hour drive on a good traffic day from Newport Beach to San Francisco. We haggled over these considerations. I asked him how much time he wanted to spend traveling to and from these appointments, and how different one UC research center would be from another. This line of questioning angered him. “I want to make the best choices I can. This is my life. Wouldn’t you want to see what’s available?”
I could not contest those words. I’d want to investigate the possibilities, for sure. I told him, though, it would be his responsibility to follow through on his quest to be accepted into the UCSF fold. I would find an elder law firm to help us draw up a family trust with medical and financial directives. Dr. J strongly suggested we do so. He understood Andy’s desire to look into other programs, but added UCI Mind’s position was that extensive travel for medical opinions and attention “is not good for our patients, in the long run.”
The hard-to-get number the cousin gave Andy connected him to a recording with detailed instructions of steps he needed to take—including gathering medical files and information—in order to be considered for the UCSF Center’s program. In the twenty-plus years I’ve known him, long before his diagnosis, Andy has not been stellar at methodically completing work. He needs the pressure of imminent deadline. We’re almost five years into this journey, have signed on with UCI Mind to participate in their research (with the understanding it’s voluntary and he can drop out at any time), and I have no idea where Andy is in the application process to UCSF. It irritates him when I ask, so I don’t.
Now, however, when we meet with Dr. J and/or other expert researchers at UCI, we arrange the chairs in the room to make sure we sit beside each other. This simple act of feng shui has made a difference; we are addressed, by and large, as a team rather than as separate well and unwell individuals.
Two days after Andy’s initial diagnosis, bees infiltrated the wall outside our stairwell, crowding in through gaps around exterior shingles. We heard their insistent hum as we went up and down the stairs. Some of them found a way inside our home via an opening under the kitchen sink, which we quickly stuffed with newspaper. They stung our dog Gus only once before we blocked them, and we remained unscathed.
Getting rid of the infestation was fraught with miscalculation. We called a bee removal service of local repute, and the bees came back in force ten days after their removal. The job was guaranteed for a month, so we called them to request what was promised us. The bees returned two weeks after the second removal, and the service said they’d have to charge us for the next. We balked and called The Bee Guy who had better Yelp reviews. When he examined the evidence, he showed us pollen deposits that indicated the bees had been present long enough to make combs inside the walls. He drilled a dozen holes through the plaster of our interior stairwell, but could not locate the comb paddles. He assured us they’d be gone for months, but would be back once they smelled the honey.
They returned after six months. The Bee Guy eradicated them, but said they’d keep coming back until the paddles were removed, or every shingle gap caulked.
Next time, he said, he’d bring his heat detector to determine the precise location of the honeycombs.
When The Bee Guy left, I joked, half-heartedly, about the plaque and the plague being visited upon us. Andy smiled but did not laugh.
I write. I’m a word person. Andy is a word person, too, and has been the first reader of my books and his brother’s books. For one of our early dates, Andy invited me to a party at his house where we played word games with his friends: Password, Fictionary, Catch Phrase, and finishing the fifth lines of limericks. We’d met online and fallen for each other, sight unseen, corresponding over a month or so, absolutely enthralled by the way the other wrote. If someone told me then that this man would within twenty years be afflicted by language impairment, I would have said they were out of their fucking mind.
But he has been afflicted. It is the reality we wake to every morning, and surprisingly enough, I’m getting used to it. I haven’t yet completely accepted the diagnosis, but I am learning how to work with it. When I don’t understand what Andy is saying, which happens with greater frequency, I ask questions that will clarify like a slightly modified game of Password. I try to remain patient rather than anxious, convinced each slip is evidence of a radical downhill slide. If he can’t come up with a word, and asks that I not tell him, I give him clues, usually with rhymes. But what helps me most, surprisingly, is that I am developing a sincere appreciation of the mistakes he makes when scrabbling for what he needs to say. I mean this without condescension. His new fractured word plays are often hilarious or poetic.
~One summer, after a cold wind moved into our neighborhood, he searched for a pair of pants to change into. He said, “I’m looking for a pair of long-sleeved shorts.”
~He pronounced the national park that graces our state Oh-sem-i-tee. It sounded more like the anthem and prayer the glorious park deserves rather than the correct Yosemite.
~A friend of his phoned him accidentally. “Hello, hello, Rainer?” Andy said a few times before hanging up. Then he turned to me and said, “Rainer just butt-fucked me.” I raised my eyebrow at him, and he said, “I knew that didn’t sound right.” Of course, he meant butt-dialed.
~On our way to an outdoor concert, he drove backstreets to avoid traffic. When I commended his smooth re-routing, he said, “I really know my way around this neighborhood. I don’t mean to sound like a show-it-all.” That expression worked just as well if not better than the intended know-it-all.
~When he was clearly sulking, I asked him what was wrong. He said, “I’m in a dark moon.” Definitely more effective than dark mood.
~I came downstairs to find him eating lunch. He offered me a bite of the Hatch chile chicken sausage, which was superb. “I just cooked it in the Microsoft,” he said, meaning microwave.
~He called an elite gated community in our town Big Onion instead of Big Canyon.
~Recounting a particularly thick patch of fog that made him have to pull the car over, he couldn’t remember the word fog, and stopped in frustration. I asked him to describe it. He said, “When the sky goes all the way to the ground.”
Andy’s disease, at this stage, affords appreciation and laughter. It won’t always be so, but for now I’ll savor that it can be.
A couple years back, Andy and I and another couple participated in the March for Our Lives in Santa Ana. Karen is a close friend of mine; we’ve known each other a quarter of a century and seen each other through births, deaths, triumphs, tragedies and betrayals. We were furious with the demagogue’s administration and its refusal to care for the most vulnerable, all the while championing the NRA. Scott and Andy know each other, though not well, and made small talk to learn more. Scott discovered Andy and I belonged to a film salon, and continued that line of inquiry, asking Andy what his favorite movie was.
I glanced over at my husband, who carried an OMG NRA WTF? sign. He hadn’t slept well the night before from worry over his 92-year-old mother and combative stepfather. Lack of sleep and stress are bad for anyone’s brain, and Andy was quiet that day. He resorts to listening and simple replies when he has word trouble. And right then I could read from his face that he wasn’t going to grab from the storage bin of his language center the name of his favorite film.
“Casa…,” he said, and looked at me. The expression he wore was anguished. Something he loved had been taken from him, or, at least, the word for it had. I widened my eyes in encouragement. “Casa…,” he said, followed by another massive pause.
Scott was kind and said, “Oh, Casablanca, yeah. I used to like it. Might be too tame for me now.” Karen chimed in with her appreciation of the film classic. Andy was crestfallen, and though I put my arm around him, the gesture gave no comfort.
So, it’s not all poetry and hilarity when your brain loses words like so many safety pins. You believe you know their precise location until you really need one.
We still dread the fourth visitation of the bees. We know the expert to call and will remind The Bee Guy to bring his heat detector so we can get at the source. But we at some point heard through our ceiling vents the gnawing of unidentifiable rodents—rats, mice, squirrels or perhaps the marsupial opossums, or a combined effort of all—and crossed our fingers that they devoured the comb paddles. The demagogue continued to surpass my expectations of awfulness until he was deposed and beyond. I wonder why we aren’t outside his Florida manor objecting daily to the fallout of his chaotic treachery. But we have a Congress as well as judges, courts, and a Justice Department, and expect they will unravel the web of deception and double-dealing. Andy is in a research program that, thus far, offers no strategy to resist the plaque waging a hostile takeover of his brain. Right now, the attacker can only be studied.
I’m left thinking about baby books, of all things, the opposite of decline and demise, those puffy catalogs of pastel satin, ribbon and hope our mothers dutifully kept for us in the 1950s. They glued snippets of our infant hair to the pages, recorded the dates of our first tooth and first smile. There were black and white snapshots of us taking first steps, or eating our first solid food, and lines on which our mothers wrote down our first complete sentences, our first words. The baby books are lost, or crumbled with age, or packed away in dusty boxes stored in garages, but the making of them was an act of affection no matter what became of the books themselves.
I’m charged with bearing witness to my husband’s loss of words, down to perhaps the last one. I can’t help but wonder, with curiosity born of love, what that word might be.
Solemnity (an update)
Last summer, we had our annual evaluation appointment at UCI Mind. I mean to use we: the two-day appointment not only involves voluminous cognitive tests and physical scans for Andy, but requires my input regarding his areas of stasis, loss or gain. It may seem illogical to mention gains with regard to degenerative brain disease, but often patients do develop new pastimes or interests. In the seven years since his diagnosis, Andy has become quite handy around the house, repairing long ceiling cracks, affixing loose moldings, even replacing a damaged toilet. He once said, without meaning to insult anyone except himself, “I had to get stupid before I learned how to do stuff.”
Mostly, though, what I report isn’t pleasant news. In July of 2023, I sensed that my interviewer, a nurse practitioner I’ll call Elizabeth, was far more tuned in to my answers than any former questioners had been. There was nothing wrong with those interviewers; Elizabeth simply approached her task with more solemnity. She listened closely and took notes on a tablet as I spoke of his loss of important names, including that of his late and beloved dog, Orejas. His loss of weight, despite eating three square meals a day with cheese and ice cream in between. His problems with managing appointments to the degree that I asked doctors’ offices to send me the reminders. His inability to do simple banking, making it necessary to merge our accounts, which had previously been separate, so that I could now keep track. My horror at discovering he, who was once a tech wizard, no longer remembered how to access emails, insisting they were the same as text messages.
Elizabeth looked up from the tablet keyboard at me. “Is Andy aware of how his difficulties are affecting you?”
“Oh, absolutely,” I said, without pause.
“And how do you know that?”
“Because he often says to me, ‘Tracy, I’m so sorry I’m putting you through this.’” My voice caught and I began to cry.
Then Elizabeth began to tear up. “Here I am trying to update the record, and I’m crying along with you.”
She asked me if I’d sought out support groups through the Alzheimer’s of Orange County organization. I said I’d considered it, yet a sticking point with me was that his case wasn’t straightforward Alzheimer’s but a rare presentation of it with progressive aphasia in the mix.
“I think I know a group that’d suit you.” She wrote the group leader’s phone number on her card, and a few weeks later I logged onto the group Zoom session.
I would have been skeptical about a support group on Zoom had I not revisited therapy on that platform during the pandemic after I found myself cursing at God for what was happening to Andy. At the age of 71, I claim a few crumbs of wisdom, one of them being that bad things happen to good people every single day because we’re imperfect and mortal. The God I’d prefer to believe in has bigger issues to monitor than a woman lucky enough to live into her eighth decade carrying on about her declining spouse. Zoom therapy helped me stop blaming a deity and focus on how to bolster myself and assist my husband here on earth. Plus, Zoom was easier to get to and cheaper than office therapy visits.
Zoom works even better for a group of folks caring for loved ones debilitated by combinations of neurodegenerative disease: Lewy body dementia, frontotemporal dementia, Alzheimer’s, primary progressive aphasia, Parkinson’s. Many members of the support group cannot physically leave their home for fear of what might happen in their absence. Many can’t afford the exorbitant costs of in-home assistance or memory care facilities. All are worn down by what’s wearing me down: witnessing someone I know and love lose the essence of who he is in continual increments.
You’d think we’d all be so traumatized we wouldn’t have the energy left to support each other, yet exactly the opposite is true.
There is great comfort sitting in a room (in this case virtual) full of care partners who suffer the same bit-by-bit disappearance of a loved one. We listen when others confess to impatience, anger, hopelessness, loneliness, exhaustion. We nod our heads in recognition. We suggest resources and temporary fixes. We affirm that we are doing all that’s humanly possible to keep our declining loved ones safe and comfortable. We encourage each other to seek respite for ourselves in walks, hobbies, visits with friends and family, staycations, or brief vacations so that we don’t lose ourselves as we are losing our loved ones. We are grateful to the participants whose loved ones have already died, but who nonetheless remain in the group because it helps them to help us.
A few meetings in, I discovered Elizabeth’s face on the Zoom screen, a member because of her spouse’s combined neurodegenerative diseases. This accounted for her solemnity as she documented my spouse’s decline. It was empathy, balm for human need and suffering, the bond shared by the care partners who appear in digital thumbnails on my laptop every first and third Tuesday of a month.
We basically stare into the abyss together, but we lock arms to keep each other from falling in.
Tracy Robert is a native of Southern California and has taught writing for four decades. She won the Pirate’s Alley Faulkner Prize for Fiction (novella), was a finalist for the Flannery O’Connor Award for Short Fiction, and has published in various periodicals and anthologies. Her book of linked novellas, Flashcards and The Curse of Ambrosia, released in October 2015, was winner of the Many Voices Project Prize at New Rivers Press.
“Losing Casablanca” is reprinted with permission from Angora Panties: The Afterthoughts of Loss, published by Choeofpleirn Press in 2024.