A Mind Derailed - Kelsey Bartman
“Based on the results of your latest tests and after reviewing your latest PET scan, I can conclusively determine that you have Alzheimer’s, Ms. Caddel. I am sorry to be the one to tell you this, but your beta amyloid levels are higher than…”
As the doctor delivers my fateful diagnosis, I grip my daughter’s hand; I feel her callused palms grip my own back in a tight embrace, reminiscent of her father’s. Today is one of the first days I am grateful he is no longer here. I know if I were able to look him in the eyes and see the fear he was trying to masquerade, it would break me. My fearless husband, William, who faced every obstacle valiantly would be terrified of my diagnosis and the pain its progression would leave behind. I guess that is one positive that –
“Mom. Mom!” Rose’s voice breaks through my wandering thoughts. I have the unsettling feeling this is not the first time she has tried to get my attention. I take a quick peek at Rose’s frustrated face as she fights for my attention, yet again. Her wavy brown hair catches the sunlight as she mutters, “the doctor has been asking you questions. Are you even paying attention?”
“I’m sorry. I wasn’t trying to be rude. What were you saying?” I ask meekly. The look the doctor gives me is full of pity for my situation, and I would do anything to change the sorrow in his eyes.
“Please don’t apologize Ms. Caddel. This is a hard diagnosis to hear, and it takes a while to come to terms with. We have already talked about your recent forgetfulness and short attention span. I was just asking if you have noticed any sleep or personality changes recently?”
How does one notice a change in sleep or personality that is significant? How do I know that my fitful sleep was not due to a stressful day or a late cup of coffee instead of my brain chemistry completely altering? “I’m sorry doctor, I am not sure how to respond. I’ve slept less
in the last couple of years than I did when I was in my thirties, but more than when Rose was a child. My mom was able to function on less sleep as she aged. Is that not just a natural progression of aging? I honestly thought my forgetfulness was just part of getting old as well. Where do I draw the line between aging and my brain’s declination?” Dr. Maxim’s low, gravelly voice whispers through the sterile examination room as he answers my questions and explains how my new normal would look and continue to progress as time goes on.
Before I know it, Rose has led me out into the bright July sun, and I take a deep breath to allow the dry air to burn the antiseptic scent from my nose. I cannot remember the last half of the appointment with Dr. Maxim, so I hope Rose took mental notes of all the important details the neurologist gave. All I could focus on was my daughter’s face as the doctor explained how my mind would continue to deteriorate. I don’t want to wake up one morning and not recognize the cute brown-haired girl with William’s green eyes when she walks into the kitchen for coffee. She is the living, breathing collection of mine and William’s best traits, and if I cannot recognize my own daughter, would I be able to recognize my husband if he were still here? And what about adorable Adeline? Will there be a day I don’t recognize my giggling six-year-old granddaughter as she runs into my arms for a hug?
“Mom we need to talk about this. I don’t think you can stay at the house by yourself anymore. I am worried something will happen, and I couldn’t live with myself if it did. I don’t want you to be alone or living with people who don’t know you. You should move in with Jacob and me. Besides, what grandma doesn’t want to move in with their first grandchild?”
In this moment, my heart cannot hold anymore love for my daughter, but I also cannot completely derail her life and her family’s plans. It is not possible for me to leave the last place William and I lived together. “You need to talk to Jacob, your husband, before you offer to let
me move into the house. I also never planned on leaving the house I shared with your father. It was our home.”
…
I rest my cheek against the cool, dark windowpane of Rose’s house and watch the snowflakes drift past all the twinkly Christmas lights Jacob and Adeline wrapped around the trees in the front yard. My hands rhythmically stroke the blanket that is tightly wrapped around my lap, and the sounds of my extended family’s laughter meanders through the room.
“Mom, do you remember when I was twelve, and Dad managed to knock over the Christmas tree while pretending to be Santa? He never managed to pull off graceful, did he?” I can hear the smile in Rose’s voice before I even glance her way. In the last four months since I moved in with her and her family, she has managed to bring William up daily. I think it must be a way for her to test me and my memory.
I force laughter into my voice as I answer Rose’s question. “Of course I remember! He was so upset with himself because he thought he had destroyed the mysterious magic of Christmas for you…” I lose my train of thought as I glance toward Rose to relive the memory of William’s chaotic Christmas Eve, and my daughter becomes lost among the sea of unknown faces scattered throughout the couches and armchairs. I know I know them, but their faces and names refuse to surface in my mind. I am lost grasping at straws that I can never quite grab, but I also don’t want to alert Rose that something is wrong. My inability to recognize the people around me is becoming frequent, but I have managed to hide it from Rose so far. Dr. Maxim promised that if I took my donepezil every day that my symptoms should not be progressing this quickly. I have been making sure to take it every day, but I don’t think Rose trusts me. If she knows how frequently I am unable to distinguish my surroundings, she will take even more
responsibility for my care. She has already moved me into her home; I do not need her to start harping on me to take my medication constantly. I am her mother for heaven’s sake, not the other way around.
“Mom. Hey, Mom! Are you okay? Are you feeling okay?” Rose’s concern shakes me out of my reverie, and I realize I need to hide my confusion better moving forward. I cannot let her know what is going on inside my head.
“Yeah, Rose. I’m fine. Just tired. It’s been a long day – a good day. Just long.” I look around at all the strangers and give them a reassuring smile because I know I am supposed to. I know I am supposed to be able to call them all by name and have spent significant time with a majority of them. I can tell Rose is about to question me further when I hear a loud girlie giggle coming from the kitchen. The blonde braids wrapped in green and red ribbons come swinging through the door and head directly for me.
“Grandma! Grandma! Look at how big this Santa cookie is!” I stare at the blonde girl’s face for a second too long before I recognize her as Adeline, my granddaughter. My heartbeat rapidly elevates at the realization that I was not able to recognize Adeline immediately; never before have I struggled identifying the family that I live with.
“Oh wow, sweetie! That cookie is almost as large as your head! Are you sure you can eat the whole thing? Maybe Grandma should help you by taking a bite!” Can Rose hear my voice shake? Does anxiety hover through the timbre of my voice like the final notes of “Silent Night” reverberating across the living room? If I am unable to recognize my own granddaughter’s features, will Rose force me to move out of her house and into a private care facility? If I can’t recognize Adeline, Rose will not trust me to stay in her home, but I refuse to move into a nursing home. I will not do that. I won’t. I just need to do better. Work harder. I need to make sure I take my donepezil every day, and I won’t forget Adeline again. I won’t. I can’t.
…
The warm August sunlight casts a shadow across the yard as I rock back and forth repeatedly in my rocking chair on the front porch. The combination of the rasping wicker chair, the crisp chirp of the crickets in the flower garden, and scent of baking grass are lulling me into a drowsy state of contentment. A blue Volkswagen whispers down the road and slows to turn into the driveway. A young man who has my husband’s beautiful green eyes steps out of the car and waves to me as he slams the car door shut. William is home.
“Hey Sandy! How are you this afternoon? How are you feeling?” William’s kind voice floats up the porch steps and embraces me. That loving husband of mine never fails to ask me how my day has been, no matter how long a shift he has just finished.
“I am doing marvelously, hon. What could go wrong on a day as lovely as today. Just look at the blue sky – a little sunlight can cure all maladies. Sit here with me for a minute and enjoy the warm weather,” I ask before he can step foot inside. The front step creaks slightly as William ascends the stairs and settles his weight in the chair beside mine.
“I am glad you are doing so well today, Sandy. You know, we have all been worried about -” William’s thought is interrupted as the front door screeches open.
“Jacob, you’re home! Adeline needs help with her homework. Who knew I was incapable of completing first grade math?” A pretty brunette woman slowly steps out of the front door with an exasperated sigh and rests her hands on the man’s shoulders.
“Yes of course sweetheart. I’ll go look in on her now.” William places a swift kiss against the woman’s cheek and slips his way past the screen door and into the house. The woman replaces William in the chair next to me, and she gives me a slow, conspiratorial smile.
“I am perfectly capable of doing Adeline’s math, for the record, but when I heard Jacob settling out here on the porch with you, I figured you would prefer my company to his.” I give the woman a small grin in response. I am not entirely sure why she thinks I would prefer her company to my husband’s, but something about her presence draws me in.
“Well, I am glad for the company you bring. And, of course, it is always good to know that someone is capable of completing first grade math.” The woman laughs under her breath and her green eyes roll towards the porch’s roof.
“Jacob appreciates the opportunity to spend time with Adeline and help her with her schoolwork. He always would have made a good teacher. He has the patience for it.” I am not sure who this Jacob is, but he seems to have a good heart and a strong head upon his shoulders. I hope he comes to visit me on the porch next. I think I would like to get to know him.
The petite woman stretches her arms towards the sky, and I hear her spine pop like a sparkler on the Fourth of July. The sound of her light, wispy voice brings a smile to my face, though I am unsure why. She continues to chatter on about her day and other mundane events, but instead of listening, I examine the woman in depth and nod along occasionally. Her shoulder length brown hair falls around her shoulders in slight waves; it curls at the ends like mine used to when I first met William. I recall spending hours trying to get the ends to flip in the opposite direction while I was getting ready for our first date. Her bright green eyes light up as she talks. I feel like I can tell her every emotion just by a quick glance at her face. She tells her stories with her entire being, with no shame or fear of judgement. She appears to be completely at peace with herself, and I know a strong, fearless woman must have raised her. I can only hope that if I am lucky enough to have a daughter one day, she turns out to be half as strong as the woman sitting beside me. I know that with William by my side, we have a good chance of raising a daughter like the young brunette rocking in the wicker chair.
“You have such a lovely ring on your finger, dear. Is that a rose? Does it symbolize something important? Rose is such a pretty name. Since I was a little girl, I have always said I would name my firstborn daughter Rose.”
As the doctor delivers my fateful diagnosis, I grip my daughter’s hand; I feel her callused palms grip my own back in a tight embrace, reminiscent of her father’s. Today is one of the first days I am grateful he is no longer here. I know if I were able to look him in the eyes and see the fear he was trying to masquerade, it would break me. My fearless husband, William, who faced every obstacle valiantly would be terrified of my diagnosis and the pain its progression would leave behind. I guess that is one positive that –
“Mom. Mom!” Rose’s voice breaks through my wandering thoughts. I have the unsettling feeling this is not the first time she has tried to get my attention. I take a quick peek at Rose’s frustrated face as she fights for my attention, yet again. Her wavy brown hair catches the sunlight as she mutters, “the doctor has been asking you questions. Are you even paying attention?”
“I’m sorry. I wasn’t trying to be rude. What were you saying?” I ask meekly. The look the doctor gives me is full of pity for my situation, and I would do anything to change the sorrow in his eyes.
“Please don’t apologize Ms. Caddel. This is a hard diagnosis to hear, and it takes a while to come to terms with. We have already talked about your recent forgetfulness and short attention span. I was just asking if you have noticed any sleep or personality changes recently?”
How does one notice a change in sleep or personality that is significant? How do I know that my fitful sleep was not due to a stressful day or a late cup of coffee instead of my brain chemistry completely altering? “I’m sorry doctor, I am not sure how to respond. I’ve slept less
in the last couple of years than I did when I was in my thirties, but more than when Rose was a child. My mom was able to function on less sleep as she aged. Is that not just a natural progression of aging? I honestly thought my forgetfulness was just part of getting old as well. Where do I draw the line between aging and my brain’s declination?” Dr. Maxim’s low, gravelly voice whispers through the sterile examination room as he answers my questions and explains how my new normal would look and continue to progress as time goes on.
Before I know it, Rose has led me out into the bright July sun, and I take a deep breath to allow the dry air to burn the antiseptic scent from my nose. I cannot remember the last half of the appointment with Dr. Maxim, so I hope Rose took mental notes of all the important details the neurologist gave. All I could focus on was my daughter’s face as the doctor explained how my mind would continue to deteriorate. I don’t want to wake up one morning and not recognize the cute brown-haired girl with William’s green eyes when she walks into the kitchen for coffee. She is the living, breathing collection of mine and William’s best traits, and if I cannot recognize my own daughter, would I be able to recognize my husband if he were still here? And what about adorable Adeline? Will there be a day I don’t recognize my giggling six-year-old granddaughter as she runs into my arms for a hug?
“Mom we need to talk about this. I don’t think you can stay at the house by yourself anymore. I am worried something will happen, and I couldn’t live with myself if it did. I don’t want you to be alone or living with people who don’t know you. You should move in with Jacob and me. Besides, what grandma doesn’t want to move in with their first grandchild?”
In this moment, my heart cannot hold anymore love for my daughter, but I also cannot completely derail her life and her family’s plans. It is not possible for me to leave the last place William and I lived together. “You need to talk to Jacob, your husband, before you offer to let
me move into the house. I also never planned on leaving the house I shared with your father. It was our home.”
…
I rest my cheek against the cool, dark windowpane of Rose’s house and watch the snowflakes drift past all the twinkly Christmas lights Jacob and Adeline wrapped around the trees in the front yard. My hands rhythmically stroke the blanket that is tightly wrapped around my lap, and the sounds of my extended family’s laughter meanders through the room.
“Mom, do you remember when I was twelve, and Dad managed to knock over the Christmas tree while pretending to be Santa? He never managed to pull off graceful, did he?” I can hear the smile in Rose’s voice before I even glance her way. In the last four months since I moved in with her and her family, she has managed to bring William up daily. I think it must be a way for her to test me and my memory.
I force laughter into my voice as I answer Rose’s question. “Of course I remember! He was so upset with himself because he thought he had destroyed the mysterious magic of Christmas for you…” I lose my train of thought as I glance toward Rose to relive the memory of William’s chaotic Christmas Eve, and my daughter becomes lost among the sea of unknown faces scattered throughout the couches and armchairs. I know I know them, but their faces and names refuse to surface in my mind. I am lost grasping at straws that I can never quite grab, but I also don’t want to alert Rose that something is wrong. My inability to recognize the people around me is becoming frequent, but I have managed to hide it from Rose so far. Dr. Maxim promised that if I took my donepezil every day that my symptoms should not be progressing this quickly. I have been making sure to take it every day, but I don’t think Rose trusts me. If she knows how frequently I am unable to distinguish my surroundings, she will take even more
responsibility for my care. She has already moved me into her home; I do not need her to start harping on me to take my medication constantly. I am her mother for heaven’s sake, not the other way around.
“Mom. Hey, Mom! Are you okay? Are you feeling okay?” Rose’s concern shakes me out of my reverie, and I realize I need to hide my confusion better moving forward. I cannot let her know what is going on inside my head.
“Yeah, Rose. I’m fine. Just tired. It’s been a long day – a good day. Just long.” I look around at all the strangers and give them a reassuring smile because I know I am supposed to. I know I am supposed to be able to call them all by name and have spent significant time with a majority of them. I can tell Rose is about to question me further when I hear a loud girlie giggle coming from the kitchen. The blonde braids wrapped in green and red ribbons come swinging through the door and head directly for me.
“Grandma! Grandma! Look at how big this Santa cookie is!” I stare at the blonde girl’s face for a second too long before I recognize her as Adeline, my granddaughter. My heartbeat rapidly elevates at the realization that I was not able to recognize Adeline immediately; never before have I struggled identifying the family that I live with.
“Oh wow, sweetie! That cookie is almost as large as your head! Are you sure you can eat the whole thing? Maybe Grandma should help you by taking a bite!” Can Rose hear my voice shake? Does anxiety hover through the timbre of my voice like the final notes of “Silent Night” reverberating across the living room? If I am unable to recognize my own granddaughter’s features, will Rose force me to move out of her house and into a private care facility? If I can’t recognize Adeline, Rose will not trust me to stay in her home, but I refuse to move into a nursing home. I will not do that. I won’t. I just need to do better. Work harder. I need to make sure I take my donepezil every day, and I won’t forget Adeline again. I won’t. I can’t.
…
The warm August sunlight casts a shadow across the yard as I rock back and forth repeatedly in my rocking chair on the front porch. The combination of the rasping wicker chair, the crisp chirp of the crickets in the flower garden, and scent of baking grass are lulling me into a drowsy state of contentment. A blue Volkswagen whispers down the road and slows to turn into the driveway. A young man who has my husband’s beautiful green eyes steps out of the car and waves to me as he slams the car door shut. William is home.
“Hey Sandy! How are you this afternoon? How are you feeling?” William’s kind voice floats up the porch steps and embraces me. That loving husband of mine never fails to ask me how my day has been, no matter how long a shift he has just finished.
“I am doing marvelously, hon. What could go wrong on a day as lovely as today. Just look at the blue sky – a little sunlight can cure all maladies. Sit here with me for a minute and enjoy the warm weather,” I ask before he can step foot inside. The front step creaks slightly as William ascends the stairs and settles his weight in the chair beside mine.
“I am glad you are doing so well today, Sandy. You know, we have all been worried about -” William’s thought is interrupted as the front door screeches open.
“Jacob, you’re home! Adeline needs help with her homework. Who knew I was incapable of completing first grade math?” A pretty brunette woman slowly steps out of the front door with an exasperated sigh and rests her hands on the man’s shoulders.
“Yes of course sweetheart. I’ll go look in on her now.” William places a swift kiss against the woman’s cheek and slips his way past the screen door and into the house. The woman replaces William in the chair next to me, and she gives me a slow, conspiratorial smile.
“I am perfectly capable of doing Adeline’s math, for the record, but when I heard Jacob settling out here on the porch with you, I figured you would prefer my company to his.” I give the woman a small grin in response. I am not entirely sure why she thinks I would prefer her company to my husband’s, but something about her presence draws me in.
“Well, I am glad for the company you bring. And, of course, it is always good to know that someone is capable of completing first grade math.” The woman laughs under her breath and her green eyes roll towards the porch’s roof.
“Jacob appreciates the opportunity to spend time with Adeline and help her with her schoolwork. He always would have made a good teacher. He has the patience for it.” I am not sure who this Jacob is, but he seems to have a good heart and a strong head upon his shoulders. I hope he comes to visit me on the porch next. I think I would like to get to know him.
The petite woman stretches her arms towards the sky, and I hear her spine pop like a sparkler on the Fourth of July. The sound of her light, wispy voice brings a smile to my face, though I am unsure why. She continues to chatter on about her day and other mundane events, but instead of listening, I examine the woman in depth and nod along occasionally. Her shoulder length brown hair falls around her shoulders in slight waves; it curls at the ends like mine used to when I first met William. I recall spending hours trying to get the ends to flip in the opposite direction while I was getting ready for our first date. Her bright green eyes light up as she talks. I feel like I can tell her every emotion just by a quick glance at her face. She tells her stories with her entire being, with no shame or fear of judgement. She appears to be completely at peace with herself, and I know a strong, fearless woman must have raised her. I can only hope that if I am lucky enough to have a daughter one day, she turns out to be half as strong as the woman sitting beside me. I know that with William by my side, we have a good chance of raising a daughter like the young brunette rocking in the wicker chair.
“You have such a lovely ring on your finger, dear. Is that a rose? Does it symbolize something important? Rose is such a pretty name. Since I was a little girl, I have always said I would name my firstborn daughter Rose.”