Us Against Alzheimer's

by Marita Golden

  In one way, the finding of John’s remains brought some closure for the students, as I am sure it did for his loved ones. But all of us must deal with the longing to sing and dance with him again, to build upon the relationships that had developed, to hear his wise, yet jumbled words, to wade into the blue pools of his eyes. Such a longing wells up alongside the pain of Alzheimer’s, in our pain about the cruelty of this disease.

  Alzheimer’s is a thief; only death, itself, is its equal. But even Alzheimer’s can’t steal the essence of personhood or the beauty of relationships. Those live on through the power of love. In some essential sense, personhood is relational, and dependent upon those loving interactions that touch the core of who we are. And they develop in the broad and level space of presence: the ground turned holy by the vulnerability and authenticity of persons who choose to enter the reality of another without trying to control it, and without losing the integrity of their own personhood. That’s what John’s students did, and I am so proud of them.

  I believe personhood is eternally remembered in the mind of God. We can be of the same mind.

  Bringing Art to Life completes each semester with a celebratory dinner in which the students stand up and say what the experience has meant to them, honoring and validating their partners living with dementia. Though not physically present at this event, John was very much with us through the reverence and gratitude expressed as the students shared his story, and the transformation it had wrought in their lives.

  In the end, they brought the wanderer back home through a friendship that reached far deeper than fractured phrases and fading memories, stretching clear across the divide of generations and disabilities, to a place where we all are one. I wonder if they know they brought themselves back home, as well?

  There was another presence in the room at the celebration that night. If I am the only one who felt it, that makes it no less real. And Dad’s eyes were beaming as big and blue as those of his new friend, John.

  EIGHTY-THREE YEARS OF IMMORTALITY

  NIHAL SATYADEV

  It was not often that the corridors of a state-run hospital in Hyderabad, India, became crowded because of a singular patient, but this case was peculiar. Nurses and paramedical staff flocked beside the young patient who was writhing in pain, in an attempt to offer solutions. They were all left stumped. A young man, who had spent time in some marshlands near his village, was driven nearly a hundred miles to the city and brought to this hospital. A leech had lodged itself in his left nostril and was gorging at will. There was great concern of the leech inching toward the brain and potentially causing lasting damage. As the assigned doctors were discussing various options, Dr. Siromani Ananthula was passing by and inquired about the commotion. It took her only a few minutes to devise and implement a solution. Moments later, she was next to the patient with a candle in one hand and a bowl of water in the other. Strategically placing the two items above and below the nose respectively, she lured the leech toward the water and easily extracted it with forceps. Ultimately, this case would prove to be by no means her most difficult but rather one of the several instances over the course of her medical career where she was able to showcase her breadth of knowledge and ability to think quickly in volatile situations.

  Siromani Dharmavaram (she would later change her name after marriage) is my grandmother and today, at the age of eighty-three, she has Alzheimer’s disease. She was born in 1935, twelve years before India gained its independence, in the town of Gooty in the Kurnool District of Andhra Pradesh. Her father was not only a respected senior official in the state education department but also earned the nickname “Panther Naidu” for his reputation of protecting nearby villages from big game—tigers and panthers that would often pick off small farm animals. It was later discovered his kill count well exceeded one hundred fifty. Her mother, as was common back then, bore the responsibility of raising the children. Her dedication to this effort would eventually manifest an inexplicable bond between her and her oldest daughter, Siromani.

  As soon as Dr. Dharmavaram finished her medical education, she moved back home to Kurnool. For six months, she worked eighteen-hour days as a house surgeon. Immediately after, she was able to start her own general medicine private practice, having gained the trust of her community through her exceptional bedside manner and medical skills. Within a year after that, she was appointed as the medical officer of the Kurnool District and then to the state medical service. Even today, nearly fifty years later, the people of Kurnool still remember her services to their family members.

  Soon after, with the blessings of her parents, she married a young police officer, Venkat Rao Ananthula, a rising star in the police force. Like Siromani, Mr. Ananthula also came from a lower-middle class family. He, too, developed an impeccable work ethic during his youth, maintaining a job as a railway clerk during the day while putting himself through college during the night. It was amid his first year of college that he took and passed the Andhra Pradesh State Civil Service Exam and was selected among thousands for one of three openings as the deputy superintendent of police.

  During the early years of marriage, Dr. Ananthula would move often as her husband’s postings ranged from fighting Chinese forces in the northernmost parts of the country to protecting one of the most sacred temples in Southern India. It was only a few years later that they were able to settle in the city of Hyderabad.

  In June of 1969, Hyderabad was rocked with violent riots. Hundreds of thousands of people took to the streets and several police officers wound up in the emergency rooms of various hospitals. As one doctor was about to treat one of these trauma-stricken young officers with a dose of penicillin, Dr. Ananthula rushed in to stop the doctor, ordering him to first administer a test dose to rule out allergic reaction. Through this swift action, she saved the life of the hyperallergic young officer, who happened to be none other than her husband.

  Mr. Venkat Rao would spend the next decades rising to the highest ranks of the state’s police force, and Dr. Ananthula, too, would go on to blossom in her career. She studied and acquired further degrees that allowed her to specialize in Ophthalmology and quickly rose to the Head of Ophthalmic Surgery at one of the largest hospitals in one of the biggest cities in the country.

  While my grandmother, or Ammamma (umm-umm-ah) as I call her, had an illustrious career, her true character was reflected in the role she played within the family. At a young age, she realized the difficulties her mom was enduring to raise her and her five siblings. Ammamma was committed to doing everything possible to help her mother. Over her first fifteen years as a medical professional, a majority of her earnings would go towards funding her siblings’ education and marriages. She, personally, found more satisfaction in seeing the family succeed than in her own success. At the time, during her early career, this was by no means a small economic sacrifice. Dr. Ananthula neither allowed herself to get her own vehicle nor ever spent money on developing any hobbies. Raising her siblings as a second mother, she would ensure that they all became either doctors, dentists, or teachers. It was only because of her tremendous efforts that her siblings all went on to be financially stable. For nearly two decades, Dr. Ananthula would balance being a full-time doctor, a mentor and provider for her siblings, and a mother to my own mom and her younger brother—three roles that required massive investments of time and love.

  Ammamma played a big role in my upbringing as I would often spend summers with her during my earliest years of formative development. Growing up, I neither knew the stature Ammamma had in the community nor the depth of knowledge she possessed in the medical field. All I was acquainted with was the unending efforts she took to ensure I was well cared for. She would read to me every night, implement master strategies to feed the picky eater I was, and share her love for classical music through impromptu karaoke nights—anyone who can bear my screeches and convince me they are song is already a hero.

  Many in my family considered her to be a wonder woman, but Fa
ther Time would ultimately prove them wrong. In 2011, after already having had a few years of cognitive decline, my grandmother was officially diagnosed with Alzheimer’s, and her role at this point in the family began to change rapidly and precipitously. However, her lifelong compassion to her family and her community is not one that is forgotten. This love continues to live on through my grandfather, who tirelessly provides her with comfort and care through the progression of the disease, and by the inspiration she has been for me to live out her example through my own life. When I visit my family in India, I see a woman who is a beacon of integrity and compassion.

  A few years ago, I began volunteering with the Alzheimer’s Association to advance policy efforts and lobby members of Congress. My role required that I analyze census data to create demographic fact sheets for each congressional district in Southern California. As I scrutinized the projections, I recognized that the cost of care for those with Alzheimer’s was on a trajectory to bankrupt the US healthcare system within a couple decades. This was clearly a concern for my generation. As an undergraduate, I was shocked to learn that there was no national organization working to inspire students in fighting for this cause.

  This was the impetus to found my nonprofit, The Youth Movement Against Alzheimer’s. My mission was to rally students to source solutions by addressing this as the public health crisis of our generation—to create and grow a nonprofit that I feel reflects the creativity and compassion of my grandma. In a few years, we grew to actively engaging over five hundred students, each with their own connection to the disease. We support caregivers like Hannah, a high school senior in Alabama who cares for her single mom who has early-onset Alzheimer’s. For young people like Hannah with no other access to community support, the Youth Movement Against Alzheimer’s serves as an extended family.

  One of the nonprofit’s most critical successes was the creation of a low-cost respite care model. With 40 percent of family caregivers for persons with dementia suffering from depression, a breakthrough respite care is among the most needed support for family caregivers. The pairing of trained student volunteers and persons with dementia for just six hours a week yielded significant reductions in self-reported stress for family caregivers. As the program scales to other campuses, we have the opportunity to inspire more students to enter the fields of aging and save the healthcare system billions by delaying entry into assisted living facilities and nursing homes. By serving as one of the volunteers myself, I was able to get a deeper appreciation for the elderly. I was paired with seventy-four-year-old Richard, and we would find ourselves lost in conversation as he regaled with tales of his career in academia. Weeks later, his wife told me, “Nihal, you are the reason Richard has a purpose again—he’s happy.” Ammamma would be proud.

  As our nonprofit continues to reach more students and shape policy efforts to address the growing national and international aging and care crisis, I remind myself of the life my grandmother has lived thus far. Ultimately, it is her values of compassion to family and community that we need to foster as a country in order to solve some of our most difficult healthcare challenges. Ammamma, you are evergreen in our memories. Your legacy will continue to live on through me and the millions we hope to inspire.

  TYING ALAN’S SHOES

  WREN WRIGHT

  I’m waiting for Alan to get dressed. It’s the first day of autumn, and we’re taking a day trip to the mountains. He finally appears, calmly proclaims he can’t tie his shoes, would I do it for him? He’s had difficulty dressing himself. This morning he was able to pull on his socks and pants, button his shirt, and pull a sweater vest over his head.

  Alan and I have been married for three years. I’m fifty-seven, he’s sixty-five. He was diagnosed with dementia nine months after we recited our wedding vows. It’s the second marriage for both of us, but the bond between us is fierce. With wet eyes, envious friends have told us this kind of love is rare, that we live in a dreamy fairy tale. We think it’s enchanting and perfect.

  This dementia, the thief, takes its time fracturing our union. No one and nothing but this wretched disorder pulls us asunder.

  Today we’ll drive to our favorite mountain town, and we’ll promenade along the Riverwalk, for this is the extent of Alan’s dwindling capabilities. No more off-trail or dirt path hiking. We stick to boardwalks and paved pedestrian routes. We’ll walk upriver holding hands the entire time, like always, staggering toward the future. We’ll take in the crisp, dry air and watch the wind rustle through the pine and aspen trees.

  We’ll visit the stationery store where we’ll buy journals that have fancy leather covers and pages edged in gilt. We’ll carry them close to our hearts while we amble downriver to our favorite coffee shop. Then we’ll sit at a black wrought iron bistro table on the outdoor patio, listen to the moving water, watch passersby as we sip chai and munch hazelnut biscotti. We’ll transfer the pain of losing each other onto the lined acid-free pages of our new books, trusting the journals and the rushing river to assimilate our words and emotions into our souls, somehow making sense of it.

  At dinnertime, we’ll saunter upriver to our favorite Italian restaurant where we’ll have a glass of Chianti and a bowl of bow-tie pasta with pesto sauce. Then at dusk, we’ll follow the river to a wooden bench under a stand of aspen trees, the perfect vantage point to watch the deer coming down from the forested hills for an evening snack, unfazed by our presence on the other side of the water.

  Then finally we’ll drive home, snaking down the mountains and foothills, on the lookout for feeding elk and perhaps a herd of mountain goats. We’ll smell the heady wood smoke rising from nearby chimneys and hold hands that much tighter, present in each other.

  At home, we’ll speak softly of how lucky we are to have found each other. Then we’ll fall asleep in each other’s arms, dreaming the same dream of floating downriver, wishing it could always be this sweet for us, wishing the thief had knocked on someone else’s door.

  Alan wakes me from my thoughts, plants a warm kiss on my cheek, adding a dash of playfulness he sometimes mixes into our private moments. He plunks himself down on a dining room chair, his arms resting on its arms. He points to his unlaced, polished brown Rockports, bringing me back into the present.

  I descend to the floor, touch his leg to steady myself, bend over his feet, lift the ends of the laces on his left shoe and cross them to begin the tie. It’s an ordinary, simple action.

  Or so I think.

  I become dizzy and nearly lose consciousness as I slip into a different knowing. In an instant, a brilliant flash of white light penetrates my skin and slides into every cell of my body. It takes over subtly, moving my hands and fingers. It’s not me tying my sweetheart’s shoelaces—it’s this mysterious force, full of light, love, generosity. I’m merely its catalyst. I imagine I’ll swell to accommodate it, but I don’t. Rather, it seeks release through my actions.

  What an honor to tie Alan’s shoes!

  As I form each bow and finish each tie, I sense the absolute purity in this ordinary act. Alan’s shoelaces are the medium and I am the conductor.

  This force, which I can describe only as love and its infinite nature, streams through me again and again, and I am in bliss. This is where the sacred resides—in performing an unpretentious task mindfully. And again a wave of reverence passes. A privilege to tie Alan’s shoes!

  I move to his right foot, the love within me expanding. This is the love that moves the universe. It’s the love at the heart of our being, and that love is simply all there is. When our fears and worries and emotions are stripped away, it’s love and only love that remains. When Alan cannot tie his shoes, it’s love that asks me to do it for him, and it’s love that complies.

  Although my revelation began meekly with an uninspiring task, this love is the force that encourages us to live fully in the mundane. It’s the force that loves and animates Alan and me and each one of us. It’s the force that loves shoelaces and the rhythm that marks our days
.

  I finish tying my husband’s shoes, rise from my place at his feet, and suddenly I understand that the day I will not tie Alan’s shoes is the day he will not need them. It’s the day he’ll leave his shoes behind, the day he’ll leave this world. I wipe a tear from my eye, grateful that I am the one to tie Alan’s shoes.

  I rise from the floor. We gather our things and load into the car, back out of the garage, and drive toward the mountains. Today we have a river to cross.

  SEALED AND DELIVERED

  WREN WRIGHT

  It’s midafternoon and the soft, full northern sunlight creeps into my husband’s hospice room. He lies motionless in what’s been his bed the past fourteen months. His hands are folded across his chest, the way he often slept the entire time we were together. I always wished he wouldn’t sleep in that position. I couldn’t bear what it foreshadowed.

  He breathes in short, quick bursts, like a majestic being giving birth to the universe, powerful and joyful in its progress and pain. Alan has not been responsive for nearly twenty-four hours now. Dementia has finally won. His nurse says he’s in the active dying process, that the end will arrive long before the morning comes.

  I sit with him for the last time. I hug him and speak softly to him, although I don’t know where I find my voice, and I don’t know if he knows I’m here. Surely, he must. I kiss his hand, his cheek, his mouth, and whisper my love to him, offering it as a guide, a line I hope he’ll carry into the next world.

  I dab water into his mouth like the hospice nurse showed me. I read to him. When I lose my voice and run out of words, I silently ask for guidance and am moved to be still, to be quiet, to maintain a calm presence. I hold his hand and remember our life together. I run my hand up his arm and feel the electricity between us—the energy that’s always been there, the essence of us as one being. I’m empty, my mind uninhabited.