2011 AFA Teens for Alzheimer’s Awareness College Scholarship
“’Fearless’ and ‘passionate’ best describe those born in the year of the Dragon,” said my aunt, reading off the paper placemat. They missed “stubborn” and “hot-tempered,” she added wryly, winking at me. Then in lilting Cantonese, she translated the English description of the Chinese zodiac for my grandmother, my Amah, who chuckled and gave us her mischievous, toothy grin. “Sun Yat Fai Lok,” I sang to Amah. Happy birthday! I was only six and I thought I saw delicate swirls of incense smoke rising from her nostrils; I thought I saw Amah’s jade scales shine smoothly in the night. The blossom-patterned cheongsam she wore glittered in the dim light, scintillating like a real dragon’s treasure. I looked and was just old enough to feel proud of my dragon-grandmother, radiant in her fiery, fierce beauty.
Twelve years later, I vividly relived that delicious feeling of childlike awe as I watched familiar sights blur by on the fifteen-minute drive to my Amah’s house. Despite the demands of classes, varsity swimming, or volunteering, I had always loved visiting my grandma on the weekends and keeping her company in the house that I grew up in. However, this particular car ride stands out in my memory as different, heavier and guiltier like the drizzling September day. That car ride was my tipping point of realization, the day I could finally say to myself that my Amah had Alzheimer’s disease.
For months up until then, my Amah had been changing, as if her headstrong and determined dragon-spirit had been chained and caged by demons of age and depression, sapping her of her vitality and of her mind. Each weekend visit was quieter than the one before; each time I hugged her goodbye for the week, her grip was a little less tight, her gaze a little less sharp. The whole of my family was in a state of graceful and translucent denial about my Amah’s condition. My aunt, a nurse, repeatedly proclaimed that Amah’s doctor had said she was “perfectly fine, perfectly normal.” Her younger sister, my other aunt, chalked up the memory problems to a lack of black sesame and scallops in the diet. My father continued to take her grocery shopping every week at the Asian market, though he kept his grip on her arm even tighter than usual and he watched more closely as she evaluated oranges without the competitive vigor she had before. My young cousins were still too young to notice that something was amiss when she left the kitchen tap running or screen doors open in the summer, and even I continued with my daily routine, juggling school and family and friends, trying not to notice the uneasy feeling that crept over me every Saturday, trying to channel hope and positivity into a glowing gloom of denial inside of me. Though I hated to admit it to myself, I dreaded the visits to Amah more and more, because I was watching the dragon in her die.
The changes in Amah were profound. Before, even after she turned seventy-five, she would walk to the local cabana club for a swim every day, regular as clockwork, even in the rain and even in the winter. Before, she would practically hog the kitchen, effortlessly producing course after course of perfectly steamed buns, perfectly crisp vegetables, perfectly white rice, perfectly saucy noodles. Before, she would point to herself in a souvenir photo framed on the wall, from Splash Mountain at Disneyland, and wait for her audience to recognize her and gasp so that she could laugh at their surprised expressions. Even now, when she doesn’t remember where the photo was taken, we all smile at the picture: in it, she’s seventy years old, seated in the second row in front of my pale, nauseous looking mother, and behind a pair of men with ponytails. My Amah’s face is rosy, her mouth open in a delighted shriek, her hands raised up in the air just as high as the two hippies in front of her. She was, as the entire family knew her to be, this snapshot caught her, strong and hardy and brave.
Throughout this time, I have had the most difficulty coping with the feelings of disappointment and denial. When I see my Amah now, frail and hollow-spirited, her hair streaked with snow, her jade scales chipped and her breathing shallow, I am not sure—no, I am certain—that I do not know her. She is not the mighty dragon, on the outside or on the inside. She is not my Amah; she is not the one who would carry me with one arm, who would climb up ladders to pick me green apples from the tree, the one who would brew me chrysanthemum tea and dry me fruit pieces in her fruit dryer and could stir fry anything to perfection. She is not the Amah who hiked at Pinnacles National Monument without a complaint, who enjoys the Indiana Jones ride at Disneyland, who immigrated to America as a single, no-English mother with seven children. She is no longer overwhelmingly hardy and strong, fierce and mischievous and adventurous all at once. I cannot admit that I know her, because if I knew her, then I would be admitting to myself that there is a new Amah now, and that she is mine, and I shall never have the old one back. The multifaceted guilt of feeling this disappointment, of thinking this terrible, piercing thought, will never really leave me.
But, as my family and I gradually approach her condition more directly, as we quietly take measures to never leave her alone, and take turns dressing her and feeding her, the guilt of denial and disappointment is not overwhelming. Rather, these feelings are shelved away in the back and their sharpness fades as we all focus on making Amah’s life more comfortable and on making her happy. As a family, we can all support each other as we come together to care for one person whom we all love. As I write this essay I am also confronting my own guilt, which lessens as this description of my Amah brings my happy memories of her back to life. Though I know I won’t be seeing Amah as bright and energetic as I am used to seeing her, telling this story has helped me to start to smile again when I think about her. I have learned that I am proud of who my grandmother is, and I love her regardless of her condition. Though it’s painful for me to see her grow feeble, I realize that she would want me to channel resilience and optimism at this tough point in my life. She would want me to be strong, for myself and for my family. As difficult as it is to see a loved one lose herself, writing about this experience has helped me come to terms, to face the problem head on, and to address the problem head on, and to address it the way my Amah would—with grace, with strength, and with a smile on my face.
Now, she sits quietly, placidly, heroically in her rocking chair. She watches countless Chinese dramas, with the television volume cranked up to maximum, as she sips tea and repeatedly looks for but forgets to ask about her dentures. I look and love the gentle soul that rocks back and forth, the rhythm of the rocking like a slow flap of gliding, resting wings. Though she no longer matches the souvenir snapshot from the Splash Mountain ride at Disneyland, though she cannot dress herself in her beautiful Chinese silks anymore, though her glances are as scarce as pearls and her words like diamonds—I am content to know that she has touched me with her dragon spirit, and that I will carry her memory through my writing and my stories. Despite my sadness at my Amah’s fading away, I know she would want me to be as strong as she is, and that she is proud of me already for surprising myself and for being stronger than I thought I was.
Erin Rolland, Highland, IN
I have two folded letters in a plastic bag on my lap as my friend follows my directions to the place I have feared to visit for over two years. My parents think I’m getting something to eat, but I have a bigger hole to fill besides my anxious stomach. We enter through steel black gates, and I start searching.
“A heart-shape, medium gray, it’s almost impossible to miss,” my sister had told me. After parking the car, we get out and weave around until we reach the heart of imported Indian granite. My granddaddy really outdid himself. I knelt down to read the name and dates. I can just make out “Hannah June Knight” before tears cloud my eyes. I run my hands over the smooth rock of my mammaw’s gravestone, and the realization finally washes over me after two years of hopeful denial. Her beautiful blue casket with the doves flying towards the heavens may be buried below me, but she is gone.
My friend rubs my shoulder as I settle myself. We sit down cross-legged right in front of the stone. Without hesitation, I begin to pour out stories of my mammaw, starting with the months leading up to her passing. These come to me easily, beginning with the day she went into the hospital from having a stroke. I tell him about the transition from hospital to nursing home. In the nursing home, my mom and I would go on Wednesdays to play bingo. Mammaw had never played bingo before, but I won her a porcelain horse figure that she was so proud to display in her room. I remember my younger cousins coming to see her and not understanding why she didn’t recognize us, or why she was so irate with my granddaddy and our parents. I remember my granddaddy going to her from the time the home opened until after it closed. I remember hoping, wishing, and praying she would get better, but none of it was enough.
I tell my friend about when she moved back to her house for Hospice. She was always upset, always seeming broken. I remembered that when I came into her room, her face would light up, and she would smile that smile I had almost forgotten. I would sit by her bed and tell her about my life, and she would stare blankly and occasionally smile. My brother could always get her to smile, but that was nothing new to me since he had always been able to do that.
I then painfully recalled the night she died. My whole family was at her house, except me. My dad called to ask if I wanted to be there; I said no. My brother came to get me; I refused to go. An hour later, the phone rang. My dad said she had passed. He told me about how she struggled to hang on until my granddaddy told her, “It’s time to go home, Mama,” and that is when she left us.
The tears fog my vision once more as I retell the days of her wake and funeral. Those days were still vivid in my mind: the countless faces apologizing for our loss, the dozens of used tissues, the seemingly gallons of tears shed. Watching my strong, southern granddaddy cry was almost more than I could bear. I realized that I had lost my mammaw, but he had lost his best friend who had been by his side everyday for over fifty years. He had shown devotion, caring, and loving for her like I had never seen, not in movies, books, or my life. Now he had to wake up every morning without her. I knew that even though she had been hard to handle and take care of for the last couple years, my granddaddy would have gone through it a hundred times over just to have her back again. My heart hurt for him, and I cried more.
After recalling her last days, I began to unearth happier memories. My friend listened as I told story after story. I remembered how much she loved ice cream, especially when Granddaddy made it homemade. I remembered how she would sing loudly in church, and kiss the pastor on the cheek after the service. I remembered how she helped me with my paper route, the canvas bag slung over her oversized Mickey Mouse sweater. I remembered when I would tell her funny stories, she would say, “Well bless your little heart!” I remembered her laugh, rich and pure and genuine. I remembered how she would call my granddaddy fat and stick her tongue out at him. I remembered that whenever anyone talked about her, it was always about how kind and pretty she was, and how lucky I was to have her as my mammaw. I remembered all these quirks, stories and more until both my friend and I are laughing and wiping tears from the corners of our eyes. “She sounded like a wonderful mammaw,” he said. “She was the best mammaw in the entire world,” I replied.
Before we left the cemetery, I needed to do one more task. I told my friend to wait in the car. I knelt by her stone and dug a small hole hidden by an assortment of flowers. I placed both folded letters in the hole and then covered it back up, making sure it was unnoticeable. I whisper, “I love you, Mammaw,” brush off my hands, and head to the car. My hair flutters in the cool breeze, as if she was whispering back to me, “I love you, too.”
The first letter was a copy of a poem I had written about her in the previous school year. The second was a letter of apology. I apologized for not being patient enough with her. I apologized for not spending more time with her when she was healthy. I apologized for all the times I was rude to her. The biggest apology was for not coming to visit her until over two years after she had passed. I apologized for making up excuses to my granddaddy for why I couldn’t go to the cemetery. I apologized for my selfishness. I asked for her forgiveness. I told her that I would always love her. I told her I hoped that we would see each other again someday, and finally, I said good-bye.
I can remember this day and countless others with her, but I wonder how many days my mammaw remembered before Alzheimer’s disease took over her mind. Alzheimer’s made her into an unrecognizable person that I have not been able to forget, but underneath everything, I can still recall the beautiful person she once was, the person that will always be remembered in the many lives she touched here on earth.
Yes, it is cruel and unfair that she had to die the way she did because Alzheimer’s not only affects the recipient, but also affects the recipient’s loved ones as well. Yes, it is sad that my younger cousins will never have the happy memories that she could have given them of her. Yes, it is hard to cope with her loss when she was such a huge part of my life. But what would be most unfortunate is if our family could not remember her as she once was: a best friend, a wonderful wife, an amazing mother, a kind mammaw, just because of a disease.
Alzheimer’s may have taken her memory, but it has not taken our memories of her. We are all survivors of Alzheimer’s disease, and we must remember Hannah June Knight for our cause to fight the never-ending battle against it. As long as we are united in remembering her spirit, the disease will never win. It has taken me over two years to accept that she is gone, but now I can look back on her memory with a smile.
Nicolle Lynn Ostrander,
"The Thief and the Gift"
As I gazed upon her, she looked frail and weak. Her eyes were barely open, and her body was covered with thick blankets. I was scared for her, scared of what would happen, scared of life without her. This was the day before my grandmother died. I remember the pain that my family and I went through, and the sense of loss. I believe that Alzheimer’s disease is like an embezzler, sneaking around taking a little at a time until there is nothing left and you are bankrupt. It steals the essence of a person away, away from themselves and their family.
As a child, I remember visiting my grandmother’s on the weekends. She would make us a huge dinner, usually a pot roast with peeled carrots and real mashed potatoes and gravy. Dinner was usually topped off with a homemade chocolate pie with whipped cream. She was an awesome cook. Her recipes were mostly all in her memory. On occasion, she would pull out a recipe she had saved. She typically never made the recipe exactly as it was written; she always had to make it better with her own use of herbs and spices. She was really unique that way; it was always a dab of this and a sprinkle of that. For example, her cup of coffee wasn’t simply a cup of coffee. She would put in one spoon of creamer and then a half of a spoon and then one spoon of sugar, then a smaller spoon of it and then a spoon with some just on the tip. This process was the same every time she made herself a cup of coffee. I was so fascinated with this process that when I was five I asked to have a cup too. I watched her every move, making sure my cup was exactly like hers. It was the best cup of coffee, well, the only cup of coffee up to that point that I had ever had. This was before my grandmother was diagnosed with Alzheimer’s.
Robbery number one: stolen conversations. I can recall one of the first indications that my grandmother didn’t seem quite herself was while over dinner, she told us about a close friend who had visited her that week. She talked about what they said and how their family was doing. A little while later she asked, “Did I tell you that Barb came to visit?” She continued to tell us the same story again. I thought it was odd that she didn’t remember already telling us about it. I didn’t think much more about it until our next visit when the same thing happened. I asked my mom about it, and my mom said that my grandmother just got confused sometimes. I thought there was more to it by the way my mom chose her words, but didn’t probe any further as I could tell that it bothered my mom. We were being robbed, and we didn’t even know it yet.
Robbery number two: grandma’s home cooked meals. As my grandmother’s symptoms grew steadily worse, dinners at her house had also changed. We always had dinners on Sundays at 1:00 p.m. She took much pride in having a warm, hearty meal ready for us upon our arrival. I remember the first Sunday we showed up, and there was no meal at all. She didn’t realize it was Sunday and that we would be coming. My mom looked worried, but said that everything was fine, and that she would just throw something together and cook for my grandmother for a change. I don’t remember having dinner at my grandmother’s after that.
Robbery number three: peace was taken and fear left in its place. I also remember times when my grandma would call my mom sounding so upset. She would think that things had happened to her or her house. My mother would say, “Those things aren’t real Mom; that didn’t happen.” Most often her stories seemed quite unreal. She thought one time that her house had flooded, and then it did really flood because she had left the water running in the bathroom sink.
When it became apparent that my grandmother could no longer cook, Meals-On-Wheels was called into service. My mom also began bringing her to our house for dinner every week. My grandmother always seemed so happy at these visits. My dad would pick on my grandma, and she would pick right back. It was always so funny. At the end of each meal, my grandmother would say to my dad, “You can cook for me anytime!” This always made us smile.
Robbery number four: independence. In 2006, my mom, along with her brothers and sisters, decided it was time to place my grandmother in a nursing home. The decision was made when my grandmother came down with a kidney infection, which made her extremely ill. Two of my aunts each took a week off of work to care for her. They discovered through caring for her that she had bruises all over her body where she had been falling. They knew that the day had come where she could no longer care for herself. A nursing home was chosen that was closest to all of us but still 25 miles away. Even though it would be a hundred miles in total, we still had our dinners together every week no matter the weather.
Robbery number five: a mother. On the journeys back to the nursing home after dinner, my sister and I would often accompany our mother. We would talk to Grandma from the back seat on the ride there and then walk her to her room. Mom would take her to the bathroom and help her undress and put her in her pajamas because she could no longer do so herself. My mom would help her into bed and tuck the blankets all around her just like she did for us. She would kiss her on each cheek and tell her, “Nighty night, don’t let the bed bugs bite.” Grandma would laugh and say that she wouldn’t. My mom would say the same things to us too. This is when I realized that my grandmother had become like a child again. She was cared for, dressed, fed, helped to the bathroom, and then tucked in just like my mom still did for my little sister. I asked my mom if that was what happened when you get older, that the elderly turn into being like a little kid again. My mom said that sometimes it can happen that way and then she cried. She later told me it was at the point that she realized that she really no longer had a mother, the person you would confide in and tell one’s hopes and fears, the person a child would go to that would put their arms around them and make everything all better. She had lost that kind of mother. Alzheimer’s had robbed her of this.
Robbery number six: the big score. After living at the nursing home for nearly two years, my grandmother’s condition worsened. It was April 11, 2007, and my mother took me to see her. She had lost a lot of weight. Her complexion was waxy and pale. She looked so frail as she sat in her recliner with blankets piled on top of her. I remember that she was sleeping as I entered her room. I approached her chair, and as I leaned down to kiss her, her eyes fluttered open and she gazed about. In an act of mercy, the thief gave me a gift. Her eyes focused on me, and she quietly whispered, “Nicolle,” and she smiled. It warms my heart to this day that my grandmother, Lorraine Holmquist, knew who I was in her last hours on Earth in spite of her condition.
Other gifts. The thief, Alzheimer’s disease, took a lot away from me and my family, but it also gave us gifts. I learned the importance of family and togetherness; that today is the time to make time. Sometimes things rob us, but sometimes we rob ourselves by not making the time to be together, to drive out of our way to see a family member, to share a meal with loved ones, to hug someone, kiss them on the cheek and tell them how much we love them. I watched my mom make the time to be with her mother, and I also watched my grandmother’s passing bring my mom closer together with her brothers and sisters because of the incredibly hard decisions that they had to make. I cherish the time I spend with my family and know that the best gift we can give each other is ourselves, our time, our presence.