Rebecca, the hospice chaplain, floats into the room carrying the spirits of all who have walked this path before. She embraces me, passing along their understanding and strength. Rebecca is no ordinary chaplain. She’s an ordained minister who also does spiritual. Alan and I claim holds on no religion, but we do spiritual.
I sit on my husband’s right side, Rebecca slips in on the left. She opens a vial of oil. Anointing rose oil, she tells me. She takes Alan’s pale left hand in hers, pats it softly. She dips her index finger into the oil and gently traces on his palm, dabbing first in the center of it, then spreading the oil in a circular motion, slowly spiraling to the exterior of his upturned hand. When she’s done, she reaches out for mine. I offer my left, and again she dips her finger into the oil. She traces the same spiral on my palm. I’m nearly breathless but present and open to what’s about to happen in this impromptu ceremony.
“The spiral,” Rebecca begins, “is an ancient symbol found in almost all cultures throughout the world. The spiral is visible throughout nature. We live in a spiral galaxy. Behold the helix shape of our DNA spirals, the spiral shape of the hurricane, the tornado, the nautilus shell.
“Our lives mirror the form of a spiral. Life is a cycle of birth, growth, death, rebirth. However, we don’t experience life as a circle, we experience it as a spiral. We learn, grow, evolve, always returning to the same place, but with more experience and knowledge than before. This spiral journey makes our world larger. Our perception has changed and we can face the same sort of situations we did before, this time with a fresh perspective. This opens new pathways, new ways of seeing and being. The entire process is thus put into motion again and again, life spiraling perpetually from inward to outward.”
My soul knows this, even if I don’t, and I want to hear more. I long for tales of the spiritual journey and how my sweet husband and I will live on together, forever.
Rebecca puts my left hand in Alan’s left hand. She holds them together, pressing our spiraled palms each into the other, mingling the anointing oil, melding the essence of the rose oil from his hand into mine, from mine into his. He’s still unconscious and unresponsive but alive and aware, I’m convinced, at a level just out of reach yet present enough.
“As the spiral symbolizes both cosmic and earthly forces, so the spirals I’ve drawn on your palms represent your lives together on the spiritual plane as well as here on the physical. Know that both of you, Alan and Wren, are bonded together throughout time, just as strongly as you are attached here on Earth. Nothing and no one can separate you. This cosmic connection between the two of you is invisible, yet its strength is more powerful than any earthly betrothal. Its underlying strength is love, and love is indestructible. Love is the foundation of all things and is the only thing.”
I’m fully present, hanging on every word Rebecca speaks. Alan’s hand and mine are still joined together, and I can’t tell whose hand is whose. His breathing pauses as a regal smile overtakes him.
From deep within me yet right in front of me, I hear Rebecca. “Alan and Wren, the universe recognizes you to be husband and wife for all eternity, never beginning and never ending, together forever.”
I gasp and let out a muffled cry at what’s taken me these last minutes to realize. This ceremony on Alan’s deathbed, more precious now than our wedding ceremony, unites us for all time, through the ages, not just on earth.
I’m in a sort of trance, hearing only a whirring sound in my head, watching my husband, seeing only him. I don’t notice when Rebecca slips out of the room. I sit awhile, holding Alan’s hand, pressing our spiraled palms together, wanting to hold him forever, to walk with him side by side, to fly away with him.
Outside it’s grown darker, quieter, calmer. I’m still at Alan’s side when the sun sets gracefully, exquisitely, with his last exhale. He is free, he has let go. And I know that I must do the same.
ALZHEIMER’S IN THE FAMILY
ANN MARSHALL YOUNG
I remember as a child watching my paternal grandmother wordlessly cutting pictures out of magazines and saving them as precious valuables. Now, knowing she had the same Alzheimer’s that later took my father, I am touched by her actions and see in them an appreciation of beauty, whatever the form, and a desire to save it from loss, just as so much else was slipping away from her.
I saw another side of Alzheimer’s when my mother was ill with a recurrence of breast cancer. I realized at some point that Daddy couldn’t really take care of her because he had some symptoms of dementia. Mama had hinted at problems in the preceding years, but it was only with her illness that I saw more clearly what was happening. Daddy was obviously not handling things well, either in his judgment or his emotional reactions. He was a retired physician, so should have been able to help with her care, but would argue that she did not need medical care and refuse to take her to her oncologist, as if this was a threat to his own self-esteem and medical knowledge.
As a result of all this, I spent much of the last several months of Mama’s life with them, enabled to do so by being permitted in my job to work in the city where they lived. In spite of Daddy’s issues, including hiding Mama’s medicine and arguing with her doctors and nurses (some of whom could deal with his behavior better than others), I did my best to manage things and take care of her. He became angry with me for just being there, even hitting me once. Daddy had not been a great father to me, and we had had our clashes over the years, but this was far worse. I felt sympathy for him at times but also despair at how difficult he made things for Mama during her last months. She, who like so many spouses of those with Alzheimer’s, ended up dying before him.
I tried to give Mama what I could, in spite of it all. It was heartbreaking to watch her waste away. As a beloved mother, grandmother, teacher, and community contributor, she had given, and meant, so much to so many. Then, when she died, I felt as if I’d lost a part of myself, and Daddy’s continuing erratic behavior made that sorrow nearly unbearable. He would switch between fury, need, and denial.
I began going back and forth between home and checking on Daddy when I could. After a time, I discovered he had been sending blank checks through the mail to pay bills, and saw that he was losing the ability to write legibly. Then, his hometown banker called me with more concerns, about his coming in with “a woman” and taking out large amounts of cash. Since he didn’t have unlimited funds, it was suggested I begin handling bills and money for him, as had been earlier directed by my mother and finalized in legal documents. Daddy also often got lost driving and had several accidents, until I finally had to “borrow” his car and “lose” his keys.
Then, at long last, I was able to get him to move to a facility where he would be more protected, when he discovered a woman he liked was living there. This was followed some time later by authorities there telling me he needed a higher level of care, which led to his finally agreeing to come to a place in the city where my sister, a nurse, and I lived.
Having him where we were made things easier, especially with my sister helping. Ironically, as he became more compromised by the Alzheimer’s, he also became calmer emotionally, at least with us. I did, however, sometimes have to address complaints about his behavior with others. His improvement with me was nice, even as I realized that he no longer knew who I was. He would sometimes treat me with ultimate courtesy, but on the other hand, at least once he made a physical “pass” at me—not having any idea, of course, that I was his daughter. Fortunately, I had been warned of this possibility by a psychologist I knew.
My sister and I learned a lot by attending support groups for families of Alzheimer’s patients, where we could compare notes and share suggestions on how to deal with the difficulties and pain of it all. I had previously learned much, from a different perspective, of how Alzheimer’s can affect families, when, as an administrative law judge, I had heard cases involving whether patients met certain state medical criteria for Medicaid to pay for their nursing home care. I had seen grown chi
ldren of Alzheimer’s patients break down crying when they shared their experiences of how the disease affected their parents, loved ones, and themselves, in so many ways.
I learned how parents with Alzheimer’s will sometimes pit one adult child against another, charging that the main caregiver treats them poorly or unfairly, resulting in families harshly splitting up over the care of that parent. This knowledge helped me when Daddy railed against me trying to “take over” things that he wanted to do, leading my siblings to express feelings toward me ranging from doubt to hostility. Fortunately, over time, all of them came to see what was actually happening, but it was a tough time. I knew other families that never came together again, not understanding what I had been lucky enough to learn.
There were some occasions that helped our general outlook on things. Once, at a reunion of old neighbors where all our remaining family had gathered, Daddy spied an old friend from across a picnic table, who looked very much like our red-haired Mama. “Here’s that sweet woman,” he cried. “I’ve been looking everywhere for you!” We all beamed at this sign of his continuing love of our mama, despite all.
As time passed, Daddy lost more and more of himself, and soon he was hardly talking any sense at all. We gave him stuffed animals as gifts at this point, as he became more and more childlike. Daddy, who had been such a smart man, now reduced to this. To avert the sadness, we, his children and grandchildren, would play with him as with a child, laughing with him and some of the other patients as they engaged in their unique play.
Then he had a fall—often a precursor to the last decline. This led to his hospitalization, where my sister and I fed him until he was well enough to return to the nursing home. By this time, he was no longer talking at all. He also began to lose the ability to swallow, but the nurses would bring ice cream, which would just slide down his throat. He seemed to enjoy this, so I would sit with him and feed him ice cream.
The last time I did this, a few days before he died, at one point he seemed to look directly at me, as if there was some awareness of who I was. This may have been my imagination, but he seemed somehow to know it was me. And there appeared to be tears in his eyes. It was as if he wanted to tell me something.
Was this possible? Some months earlier, I had seen him flip from hallucinating and talking nonsense to being sharp as a tack for a quick moment, to address an overheard comment about himself. And I had heard him, within just the previous month or so, haltingly trying to count numbers, as if working against Alzheimer’s by exercising his brain through somehow-remembered knowledge from his earlier medical career. And doing so with the pride of a child reciting his ABC’s. Little bits and pieces of lucidity and humor in the midst of everything.
So I wondered whether it was possible he really was somehow trying to communicate with me. I don’t actually know what was going on in what was left of his mind, but I hold on to that image of him looking at me and like to believe there was some consciousness there on his part, some desire to impart a message to me. And the message some part of me felt—or at least hoped was true—that last visit with him, was that he was asking my forgiveness for not having been a good father to me and telling me that he loved me.
I think of this from time to time, especially in those moments when I look into my own future and fear the day this disease may begin to take bits and pieces of me. And dearly hope some lovely lucid pieces remain.
STRANGER THAN FICTION
INTRODUCTION
A fictional meditation on Alzheimer’s and other dementias is a coat of many colors: tender, strong, curious, familiar, heartbreaking. And always a reflection of who we the readers are and who we could become. Fiction with dementia as part of the thematic tapestry is always about more than dementia. The stories are “about” the main character as somebody’s somebody—mother, father, son, daughter, husband, friend. The funhouse mirror of fiction, both truly true and built on “make believe” through the winding road of the story, gives us back and unto ourselves as we inarguably are—indifferent and loyal, cowardly, misguided, terrified, and stubborn in the face of a disease that evokes a unique and chilling kind of terror.
Poetry springs from the soul. Fiction is rooted in the depths of our dreams and fears. Fiction walks the thin line between truth and emotion, fact and what if. It walks that line and crosses it again and again. Fiction is an open wound, a crooked smile, an unflinching gaze. Fiction reminds us that there is much we cannot escape, illness, affliction, pain, life itself, and the reality of redemption. How can there possibly be the right words, enough words, accurate words to describe and “recreate” the dementia-mind? Because there are right words, enough words, accurate words to describe and “recreate” all human horrors and human fears. Writers are blessed and cursed with a relentless insatiable will to know . . . everything and that will pick the lock on every mystery. An Alzheimer’s story will always affirm that in the end there is no forgetting, there is only what we ache to remember and what we wish could forget. There is no forgetting, there is what we will take with us and what we will leave behind.
SUNRISE, SUNSET
EDWIDGE DANTICAT
1
It comes on again on her grandson’s christening day. A lost moment, a blank spot, one that Carole does not know how to measure. She is there one second, then she is not. She knows exactly where she is, then she does not. Her older church friends tell similar stories about their surgeries, how they count backward from ten with an oxygen mask over their faces, then wake up before reaching one, only to find that hours, and sometimes even days, have gone by. She feels as though she were experiencing the same thing.
Her son-in-law, James, a dreadlocked high-school math teacher, is holding her grandson, Jude, who has inherited her daughter’s globe-shaped head, penny-colored skin, and long fingers, which he wraps around Carole’s chin whenever she holds him. Jude is a lively giggler. His whole body shakes when he laughs. Carole often stares at him for hours, hoping that his chubby face will bring back memories of her own children at that age, memories that are quickly slipping away.
Her daughter, Jeanne, is still about sixty pounds overweight on Jude’s christening day, seven months after his birth. Jeanne is so miserable about this—and who knows what else—that she spends most days in her bedroom, hiding. Since her daughter is stuck in a state of mental fragility, Carole welcomes the opportunity to join Jude’s other grandmother, Grace, in watching their grandson as often as she’s asked. Carole likes to entertain Jude with whatever children’s songs and peekaboo games she can still remember, including one she calls Solèy Leve, Solèy Kouche—Sunrise, Sunset—which she used to play with her children. She drapes a black sheet over her grandson’s playpen and pronounces it “sunset,” then takes the sheet off and calls it “sunrise.” Her grandson does not seem to mind when she gets confused and reverses the order. He doesn’t know the difference anyway.
Sometimes Carole forgets who Grace is and mistakes her for the nanny. She does, however, remember that Grace disapproved of her son’s marrying Jeanne, whom she believed was beneath him. That censure now seems justified by Jeanne’s failures as a mother.
Jeanne, Carole thinks, has never known real tragedy. Growing up in a country ruled by a merciless dictator, Carole watched her neighbors being dragged out of their houses by the dictator’s denim- uniformed henchmen. One of her aunts was beaten almost to death for throwing herself in front of her husband as he was being arrested. Carole’s father left the country for Cuba when she was twelve and never returned. Her mother’s only means of survival was cleaning the houses of people who were barely able to pay her.
Carole’s best friend lived next door, in another tin-roofed room, rented separately from the same landlord. During the night, while her mother slept, Carole often heard her friend being screamed at by her own mother, who seemed to hate her for being a burden. Carole tried so hard to protect her U.S.-born children from these stories that they are now incapable of overcoming any kind of sadness. Not
so much her son, Paul, who is a minister, but Jeanne, whom she named after her childhood friend. Her daughter’s psyche is so feeble that anything can rattle her. Doesn’t she realize that the life she is living is an accident of fortune? Doesn’t she know that she is an exception in this world, where it is normal to be unhappy, to be hungry, to work nonstop and earn next to nothing, and to suffer the whims of everything from tyrants to hurricanes and earthquakes?
The morning of her grandson’s christening, Carole is wearing a long-sleeved white lace dress that she can’t recall putting on. She has combed her hair back in a tight bun that now hurts a little. Earlier in the week, she watched from the terrace of her daughter’s third-floor apartment as Jeanne dipped her feet in the condo’s kidney-shaped communal pool. She’d walked out onto the terrace to look at the water, the unusual cobalt-blue color it becomes in late afternoon and the slow ripple of its surface, even when untouched by a breeze or bodies.
“I won’t christen him!” Jeanne was shouting on the phone. “That’s her thing, not ours.”
“We’re up soon,” James says, snapping Carole out of her reverie. He is using the tone of voice with which he speaks to Jude. It’s clear that this is not the first time he’s told her this. Her daughter is looking neither at her nor at the congregation full of Carole’s friends. She’s not even looking at Jude, who has been dressed, most likely by James, in a plain white romper. Jeanne stares at the floor, as others take turns holding Jude and keeping him quiet in the church: first Grace, then Carole’s husband, Victor, then James’s younger sister, Zoe, who is the godmother, then James’s best friend, Marcos, the godfather.
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