Dementia, Word, This

2013 Honorable Mention (Essay)

Grandpa told us flatly that he grew up at the base of Mount Everest. We all laughed, horrified. “Mount Rainier,” my uncle corrected him, after long silence. At my cousin’s wedding reception, we stood in a small circle, hemming my grandfather in as he recounted stories from his childhood, the only stories that seemed accessible to him those days. As long as he was trafficking in the distant past, we could believe that his memory had not gotten that bad, that his brain was not turning mushy like overripe fruit, that he was little more than forgetful about the present. We weren’t even using the word “dementia” yet. My mother chalked up his confusion to his hearing loss, then to fatigue, then to lack of social stimulation—everything but the “d” word. Then he would say things like “Mount Everest” and not understand the need for correction and leave us all nervously running for cover. A distant acquaintance came flitting by our circle and stopped by my mom to comment to her in the high and chirpy way that best suits the lies uttered at weddings: “Your parents look so wonderful! I mean, so wonderful. They are doing so well.” My mom’s jaw tensed, as she gave a strained, agreeing nod and a tight little upturn of her lips. She said later, “I can’t stand that woman.”

*

As a chaplain on a dementia unit at a nursing home, I am used to an unusual daily fare. Pamela pushes her plastic baby in a stroller. Peter wails songs from the Old World, shifting keys between breaths. Ted disrobes every afternoon at three o’clock; we try to catch him when he begins unlacing his shoes. Evelyn tells me she loves me, pulls me close, and kisses me. Dot swipes underwear and picture frames from her neighbors’ rooms and stashes her finds throughout the unit. Ted and Alice hold hands and sit close to each other; Ted was recently found snuggling with Grace in her room. Joe alternately calls me his (dead) wife and “sissy” when he thinks I’m a nun. Donald, a WWII vet, hallucinates about the enemy tunneling into his room. He tells me that members of the glee club shot his son; nothing I say soothes his tidal wave of grief. Anna believes her family left her on a cruise ship. She wheels up and down the hallways, calling for them to pick her up. Doris seethes, convinced her wheelchair-bound husband has left her here so he can have affairs with women in the senior condos across the street.

For intimates, their loved ones’ new, bizarre, and baffling ways of interacting with the world strike them not so much as unusual as distressing. A wife arrives on the unit every afternoon, sits in the same dayroom chair, and places her hand on her husband’s forearm. He’s an Italian immigrant who fought for his new country in WWII. Typically, he is either asleep in his wheelchair or babbling at high volume. His wife almost always appears embarrassed and apologetic. She’ll sometimes tell me—in a far off way as if rehearsing this line to herself at a distance—“he doesn’t seem to be getting better.” This fact disappoints her anew each day. But like the guard at the tomb of the Unknown Soldier, she stays duty-bound beside him for an appointed amount of time: hand on cold skin, eyes to the blank distance, visage sullen but stoic—the ritual, a grave testimony to a rationed hope. I imagine she aches for new eyes to see her beloved as a new, not fallen, creature. For both professional and familial caregivers, the finitude of the mind haunts us, stalking us with its truth. No person, however endowed, stands outside the shadow it casts—no, no one. This day may be the last day as we know it.

*

The usually sharp annual Christmas letters Grandpa typed on the computer, with meticulous glossing about each family member, became like blurry polaroids; we could make them out if we focused hard enough. (Where are the verbs and mention of the in-laws?) Saying nothing of the letters’ crumbling syntax, my mom took offense that her dad had left out my dad in these annual brag rags. (“Doesn’t my thirty-year marriage mean anything to him? Why doesn’t Grandma proofread for him?”) The letters stopped altogether, and I began receiving bargain bin Christmas cards. Four years ago, my grandmother signed the card “Grandma,” and my grandfather signed his first and last name in doctor scratch, as if he were signing a prescription for a patient. Three years ago, the last Christmas before her death, Grandma signed for both of them.

Grandpa scratched down the business’s ten-digit phone number on an envelope, instead of the address. At that stage, numbers came more easily to my grandfather than letters did. The mailman solved the riddle and delivered it. Grandpa called the police one night. When the officer came to the house, Grandpa led him into the bedroom and startled Grandma awake. Grandpa couldn’t explain to either of them what the trouble was, something about Grandma not waking up. The officer marked it down as a “domestic dispute.” My uncle, the only kid who lived in town, started getting phone calls about Grandpa’s driving. My mom questioned if these callers really knew what they were talking about. My gentle prodding about what possible motivation the pharmacist or the mechanic might have for calling my uncle—other than genuine fear of my grandfather being on the road—did not seem to register with my mom. Eventually, she conceded to filling out the DMV paperwork to have him retested, which he would’ve certainly failed. She sat on the letter for months, convinced it would betray her parents and kill her father if she mailed it. The gig would be up. With the finality of words on a page, she would be admitting to herself, her parents, and the state that she knew.

*

As a sleep walker, I often feel that a foreign body controls whole regions of my mind. This entity possesses some of my known traits, traces some of my mind’s shadows. She is not unrecognizable to me but responds to callings alien to my waking self. Under her influence, I’ve pushed my heavy chest of drawers along the bedroom wall because it was blocking our doorway (it wasn’t) and my parents were trying to get in (they live 1,000 miles away). I’ve stripped our bed of its top blanket, because our (nonexistent) guests who were sleeping in the living room needed it. I’ve taken a shower at two in the morning because it was time to go to work. I’ve searched the apartment frantically for my friend’s baby whom I was supposed to be watching. I’ve pulled out the contents of our First Aid kit to help a bleeding stranger in our kitchen. I have slept on the couch more than a few nights when a snake was in my bed.

“Get it! Get it!”

My husband, catapulted from sleep into the cacophony of my nightmare, responds, “Get what?”

Sometimes when I’m typing my fingers don’t land on home row. I type ms,r instead of name. I’ve shifted over a key, punched out non-words, realigned my digits, and deleted it from memory. Sleepwalkers and the demented can’t seem to re-find home row on their cognitive keyboard. They persist in their shifted key, rendering decoders—husbands and adult children—impotent in the face of their ms,r.

“Get it! Get it!”

“What? What is ‘it’?”

There is a large snake in our bed, right under our covers. I don’t know how it got there, but it is right by me. You know that I am terrified of snakes, so I need you to get it out of our bed, so I can go back to sleep. Now, you get it. I never come up with the words and so—“Get IT!”

*

With the confident distance of a tour guide, Grandpa walked me to each of the grandfather clocks that overpopulated the house; a master craftsman, he had built all four. He opened the front of each clock, exposing the innards. He tugged on the chains, shifted up the chimes, explaining, “See, you put this here thing…up. This thing…like this…then you get this.” Three times he repeated—open, tug, shift, close—like this, then this, then this, like this. If I had been sleepwalking, I would have intuited why the clocks, chains, and chimes, why each thing needed this and this. But my non-sleeping self, lost on this curious tour of grandfather clock mechanisms, grew impatient with it.

Grandpa has not said my name for going on a decade. He took to calling Grandma, “this woman here.” The dailiest words escaped him: mom, bread, wife, Danish. My mom held up a grapefruit, and Grandpa insisted it was a pineapple. “Dad, you know this is a grapefruit!” she said, exasperated, flipping it back onto the counter. Bystanders often believe for a time, by the human gift of denial, that the obtuseness of those with dementia stems from willful stubbornness—a characteristic we know, despise, and can try to correct. This is easier to contend with than plaques and tangles and the ethereal extinguishing of neurons.

With a bucket of Kentucky Fried Chicken in tow, my mom and I made the two-hour drive on Christmas Eve to my grandparents’ home. Grandpa prayed over our drumsticks, rolling the words from his head in a pious cadence: Father God…we thank you for thy bounty at this here…today. After lunch, we stood in the kitchen and sang Christmas carols. Grandpa belted the harmonies, which is no small miracle given that he can’t hear. “God rest ye merry gentleman, let nah nah nah nah nah…” No one knew the second verses, and no one cared. We carried the melody in our mumbling.

*

The following fall, Grandma’s sudden death hurled my mother into the reality— unmediated by her mother—of her father’s dementia. She moved in with the new widower and experienced firsthand some of the torment her mother had endured for years: the nightly wandering and frantic flipping on of lights, the unredirectable fixation on finding his car keys, the afternoon agitation. (A few months before Grandma’s death, word got back to my mom that one afternoon her dad had hit her mom. My mom visited them to assess the situation and reported to the rest of the family that everything was fine, except “Mom’s hearing has really gotten bad!”) Like a wrecking ball in the gut, grief for her mother and her father struck my mother with its relentless, breathtaking blows in those first weeks. Grandpa walked past a photo of his wife of sixty-five years and remarked matter-of-factly to my mother, “I haven’t seen that woman in a while.” My mom slid the frame facedown into a drawer. On another day, Grandpa bugged my mom for hours to buy a certain kind of jelly. “Dad, we have several jars of the jelly you like.” She would take him to the pantry and show him. But still he was not satisfied and became more and more insistent. Finally, my mom grabbed her purse and keys, let out a huge sigh, and said, “Fine, Dad, let’s just get in the car. We’ll go to the grocery store.” At the store, they got another jar of the exact same jelly that they had in abundance at the house. My mom was seething, maddened by the grief he was causing her. On the car ride home, she told her dad how frustrated she was with him. He did not have any earthly idea why.

*

It is a truism in helping professions—when it comes to family, the light of one’s professional knowledge and training grows strangely dim, clouded by the complex feelings and negotiations of personal intimacy. A usually competent therapist can’t see his way to providing much help for his own distressed son. As a rule, it is best for a surgeon not to cut open her own mother. At work on the dementia unit, I am rarely instructive or directive toward residents or their families. Instead, I bear witness: watching a resident as even swallowing becomes hazardous; waiting for a daughter—one of these days—to re-learn how to laugh; whispering the only Italian I know to Concetta, smiling and mute, in her reclining wheelchair; hungering, in a room aching of bodies still here, to know what they have not forgotten. I attempt to hold these experiences in a careful but loose embrace. But with my own mother the embrace is a tight, judging circle: Why do that? Couldn’t you try this? Oh, don’t do that. Why not this? Such is to be expected—the fracturing of the professional and personal—and yet I want to be less detached in one and more detached in the other. Perhaps even this wish is plain hubris; who yet has escaped these personal passions?

*

A friend, not without judgment, commented to me how long my mom had been living with her father and how long it was taking her to find a care facility when it was obvious that he needed one: “Didn’t your grandmother die three months ago?” I admitted it was taking many weeks longer than expected, but my friend failed to understand how strong my mother’s denial had been before my grandmother’s death—how it had taken this long for my mom to uncover all that her mom had hidden. What her death unearthed could only be downed in small doses. I suspect that this is why she had to die suddenly. A slow decline would have required too much letting go, too much embarrassment, too much painful witnessing of her daughter’s assumption, day by godforsaken day, of her crosses. By ignoring weeks of inexplicable piercing headaches, drafting a clear living will (no extraordinary means), and refusing medical care as a life-long rule, my grandmother helped herself along to a quick and painless death. A brain hemorrhage was a rare mercy she allowed herself in this life. On the morning of my grandparents’ weekly shopping trip, the driver— a teenage boy whom my mother had hired to shuttle her parents around town—found my grandfather on the lawnmower and my grandmother unresponsive in bed. Later we discovered that she had packed her purse for the shopping trip and tucked it behind a couch cushion the night before; she must’ve learned to hide all that was important to her in those wandering years. When they air vac-ed her to St. Louis, a twenty-something medical resident pushed for surgery, eager to try out his newly acquired skills on an end-of-life patient. My mom had the sense to bring her mom back home, where she died peacefully a few days later, neither waking up nor needing the hospice pain medications. To the end, she was stoic and practical, no thing unnecessary.

*

Sleepwalkers have the privilege of waking up and informing partners of the contents of their half-remembered dreams. My husband need only recount to me my actions or a word or two I said the previous night, and the details of the dream will often flood back into my waking awareness. While just a few hours before, the dream was reality, now I struggle to string together the images and emotions into a coherent narrative. The logic of a dream world is self-contained, which is why it is terrifyingly real for the dreamer and annoying or laughable or mystifying for the awakened bedmate. When I awake in the morning, the feeling of terror is but a faint hangover. Those with dementia do not have the privilege of waking, nor do their loving bystanders have the privilege of getting to the bottom of their internal reality and the behavior it invoked. If dementia is anything like terminal sleepwalking, the inner experiences are felt as real. There is no reasoning one back to the awakened world. It must be entered into by brave partners whose love overrides the fear of losing themselves in the sometimes-nightmarish fragments. Feeling around for a narrative foothold—a word, an image of meaning—be prepared for free fall, a descent into apocalyptic grief over the known world and all it presents as important. Find yourself plopped, wind knocked from you—sitting in silence—on the fractured earth. Liberation in the desolation may come, as two cool pools—eyes brimming with a new life—confront you. If you want to be well, rise up and enter them. Some seek firm land, out of sight of the pools. Some sit by the pools for short spells, dipping their toes in on occasion. A few plunge in, go wholly under, and re-emerge new creatures—their fear transmuted into courage; their logic transmuted into a different kind of wakefulness, where all things are being made new.

In the days after Christmas my mom moved her dad into The Pines, an Alzheimer’s care facility a few miles from my parents’ house. This is the closest my mom and her dad have lived to each other since she moved out of her parents’ house at eighteen. When I go home for visits, I have to remind myself that visiting my grandfather—which had always been an ordeal because of the distance—now entails a short trip across town. Despite some bumps in the road—Grandpa’s resistance to showering, some medication hiccups, and a couple trips to the hospital for non-life-threatening conditions—he seems content, thriving even, in his new home. My mom, convinced a few months back that taking him from his home would be a death sentence, now seems to be breathing again.

For his past two birthdays my mom has hired a local saxophonist to play my grandfather’s favorites—namely, Glenn Miller and Tommy Dorsey—at The Pines. My mom sent me a picture: the saxophonist with her cheeks puffed out blowing on the horn and Grandpa (once a jazz trombonist) beside her, responding to her call with an ecstatic gesture of the hand and a conspiratorial glint in his eyes. He speaks fluently, musician to musician. A few months ago, some of his Rotary buddies who live close by invited him to a sing-a-long. One of the men played the organ and the others sang old hymns and patriotic songs from a booklet. My mom reported that he seemed to have a nice time, although he could not read the lyrics and did not seem to remember his friends. “You know,” she said, “he is just not right.” She often reports to me this phrase word for word—he is just not right—which is usually preceded by a statement about how well he is doing. For a time, her words puzzled me. Of course he is “not right,” he has dementia, a progressive brain disease that he’s had for nearly a decade now. It is hard for my mom, for most of us, to reconcile how anyone can be both happy and diseased. And that “d” word gets stuck in the throat; to name it is to acknowledge that we, too, will be and are tangled up with it. Like so many caregivers I’ve encountered, she believes—in some small corner of her mind—that he will be “right” (or “righter”) one day when she walks in to visit. It is an immense task to see him right, now.

*

It is two and a half years since his move. My sister, her two kids Sam and Leah, and I arrive at The Pines to visit Grandpa. We find him sitting in the dayroom with two women residents next to him. My sister and I pull up chairs and complete the circle. Sam and Leah, who are five and three respectively, run full speed into his lap. “Oh! Oh my!” Grandpa says, happy, overwhelmed, and breathless from two heads barreling into his stomach. The affection of little children possesses an unrestrained, almost attacking quality—love on the offense. A bright blue balloon lies on the dayroom floor. Sam and Leah immediately seize upon it, bat it in the air, squealing delightedly. They hit it toward Grandpa, who hits it back to them—an instant game. They scramble to be the first one to hit it back again. After a few minutes, Grandpa grabs the balloon and hides it behind his back. The kids descend upon him with pleas, “Give it back, Great-Grandpa! Give it to me!” (With Leah’s speech impediment, it comes out as “Gif it back, Gweat-Gwandpa!”) He pulls it from behind his back and bops each kid on the top of the head. They laugh, and Sam reclaims the balloon and makes a solo game of hitting it harder and harder from ever farther distances across the dayroom. Leah retreats shyly into her mother’s arms. Kiki, one of the women in our circle, has lost her words, too. She smiles at Leah, reaches out to pat her arm, and softly rubs her smooth toddler skin. My sister reassures a tentative-looking Leah, “Ms. Kiki likes you.” Kiki, slate eyes aglow, coos at her and speaks inaudible but credible maternal mumblings.

It is little surprise that Grandpa and the kids get along so famously. The reason is not that my grandfather has regressed into a second childhood. A disease may rub out the brain’s access to memories, but no disease can obliterate a lifetime of experiences and relationships. Rather, with the power to control their surroundings stripped from them—or, in the case of children, not yet afforded them—they can connect on a creaturely level, free of the trappings of navigating complex social cues, of projecting a promising self-image, or of deploying the supremacy of ideas as a detour around the indefinite truth of emotions. The usual web of expectation and disappointment disintegrates. For both the demented and the child, the light of this flickering moment floods their awareness, draws their attention wholly. I guess we all must enter and exit life in this way—stripped down, little, miracle defined by the cosmic two-step of presence and absence—and figure out in the time in-between how to regard these passages, all passages, as purifying.

We play one final round of batting the balloon. Now Kiki is intent and Leah breaks from her mother’s arms to help and I hit it, too—the whole circle possessed by one purpose: to keep this shrinking blue oval of air up and up and up; to touch ground is death. The time comes for us to leave, for all games to end. We gather around Grandpa and exchange good-bye hugs and kisses. In garbled speech he expresses clear gratitude. The blue balloon that floated between us—lending a singularity to the visit, a drifting and impermanent beauty—rests back finally on the ground. I emerge from The Pines into the July sun, feeling still and loved, knowing that below words is this.