I wonder what it feels like to die.
The thought runs through my head as I stare at my mother. She hasn't eaten in days and will be dead before morning.
Is dying peaceful? Does she have regrets? Does she even know I'm here?
"I'm here, Mom. You probably have no concept right now, but I'm here. It's okay for you to leave. I'll be okay. I'll take care of Dad. Even though you can't say it, I know you love me. I love you too."
She hasn't moved in hours. Slowly, she turns her head in the direction of my voice and lets out a moan. I take her frail hand in mine.
"I love you too, Mom. I'll be okay. You need to let go now."
She ever so slightly squeezes my hand, so slightly I may have imagined it. I kiss her hand and her forehead. I stay with her a while longer, then go into the living room and lie down on the recliner. I haven't slept in at least two days. Within an hour of my goodbye, she's gone.
As I stood there looking at her lifeless body, I felt my body loosen, the burden of the past several years finally lifted from my shoulders. I thought Alzheimer's would no longer have a hold on me.
I was wrong. It's been 20 years since my mother died of early onset, or younger onset, Alzheimer's disease. She was 53. I was 17. Losing her — and realizing that I, too, could develop the disease — has haunted me ever since.
My mother was always forgetful. For as long as I can remember, it was a running joke in our family. "Welp, Mom forgot again. Being forgetful is hilarious. La, la, la." Her reminder notes so littered our house that if anyone found one, we had a designated place in the kitchen where we'd put them. It was an enormous pile.
Alzheimer's disease isn't common for people in their 40s. While someone develops it every 67 seconds, those patients are typically over 65 years old. You can imagine the shock when we discovered that my mother, at just 49, was battling this disease. I was 13.
"Isn't Alzheimer's what old people get?" I asked the neurologist while fighting back tears. We were sitting in a clinic in Eau Claire, Wisconsin. My mother had been going to neurology appointments for a while, but I had no idea how serious things were. This was the first appointment my father had brought me to. He'd even pulled me out of school for the day: I assumed they were going to tell me my mother had brain cancer.
As the doctor shifted his gaze from my father to me, I could see the pity in his eyes. In that one look I knew my life would never be the same. He explained that it was not common for this to happen to people my mother's age.
Okay, so how did this happen? I thought. Do you "catch" Alzheimer's? Is there a cure?
My father had flashed a look at me. I sat there, confused and scared and silent. I just wanted to know what the diagnosis meant. I'd known people who had cancer, and there were treatments for that.
The doctor wasn't saying anything about treatment.
When we got home after the appointment, I did the only thing one could do in the early 1990s: I looked up "Alzheimer's disease" in the Encyclopedia Britannica.
The encyclopedia had just two paragraphs about the disease.
"Discovered by Alois Alzheimer," blah, blah, blah. ... "From the onset of the disease, you can expect the person to live between 7 and 20 years."
That's it? So she's gonna die for sure? Why isn't there more about this? I thought.
I looked up "onset" in the dictionary but still didn't quite understand what it meant.
Okay, I thought, I'm 13 now. If she lives seven years, I'll have her until I'm at least 20. I'll be in college, and everything will be fine.
At that moment, my mother walked into the room.
"How was school today? Are you doing homework?" she asked with a smile on her face. I hadn't gone to school that day because of her appointment.
I told her I was reading about Alzheimer's disease.
"Oh, that's what that nice doctor says I have, right?" she asked. "What is it?"
My heart dropped. I explained as simply as I could — the way the doctor had done earlier that day — that it's the reason she'd been so forgetful over the years. It's why she always wrote notes to herself. She laughed.
"Mom, how do you feel about this?" I asked.
She stared at me blankly. I noticed the familiar spark in her eye had disappeared. "Are you sad? What does it feel like?"
She started to cry. "I don't understand..."
I hugged her to calm her down and told her it was okay. "We don't have to talk about it anymore," I said, and turned on Cinderella. She always liked Cinderella.
I was 15 the first time my mother didn't recognize me.
It was the fall of my sophomore year of high school, and I was home for dinner on a rare practice-free night. Since the school year began, I hadn't seen much of my mother. Typically, she was in bed before I arrived home after events. In the morning I was always running late and hadn't seen her more than a second for a kiss goodbye.
While we ate on this particular night, I noticed my mother holding her spoon upside-down and attempting to scoop. I looked at my father.
"She's been doing that for about two weeks now," he said, as he continued eating. "Just let her figure it out."
As I watched, she became increasingly frustrated.
"Hey, Mom, remember, you hold a spoon this way," I said, putting the spoon right side up in her hand. She immediately turned it back the wrong way.
"Do you want me to feed you, Mom?" I asked. She nodded.
It had been a while since I heard a whole sentence from her. While feeding her, she suddenly stopped, looked me in the eye, and asked, "Where is your mother?"
My head went light. My father laughed. I mean, what else can you do in that situation? The only thing I could think to say was, "You're right here, Mom."
"Oh," she replied and looked down.
Once we finished with dinner, I hugged my father, then my mother. She shoved me away with her elbow.
That became the new normal for her, not liking to be touched, at least by me. After this incident, her decline was swift and merciless.
Up in my room, I burst into tears. She's not going to get better. How can she get better when she doesn't even know me?
That's when I realized that I could have her fate. I got scared. That fear became my obsession. It plagued me so much that I had constant stomach cramps for much of the next two years. Doctors couldn't find anything wrong with me. I learned to live with the pain. A few years later I would learn the cramps were caused by anxiety.
The only way I could think to remedy myself was with vitamins. My parents were big on supplements, so I started doing research in one of many books they had on vitamins, herbs, and alternative medicine. Nothing ever helped my stomach, but I was determined to protect my brain.
I began filling my diet with antioxidants, stopped drinking soda, and refused to eat fast food. I stocked up on gingko biloba, B-complex, and vitamin E through a mail-order catalog, and ate spinach, broccoli, lentils, blueberries, and fish to boost my brainpower.
I also absorbed myself in school. I got into the habit of requesting extra homework from my teachers, not because I wanted the extra credit but to keep my mind busy. My grades, and what I put into my body, were all I could control. Being in control of something kept me from withering into helplessness. I needed control of something since the rest of my life was a horror show.
Absorbing myself in schoolwork and activities caused me to withdraw more and more from my home life. I took any opportunity to be away from home. I was on the varsity cheerleading squads for football and basketball, and added the dance team to my résumé my sophomore year; I sang alto in the show choir and was a part of the school musical every year in some capacity.
When I wasn't doing extracurriculars, I was with my boyfriend or best friend. With all of this distraction, I maintained an A average, but something had to give.
At 16, during the climax of my mother's downfall, I became hooked on caffeine pills.
The more I withdrew from my mother, the more outgoing and happy I forced myself to be outwardly, and the more I relied on pills to keep me going. I didn't care about any of my activities. They were merely a distraction. It got to the point that if I wasn't smiling or peppy at school, people would ask if something was wrong. I'd immediately flash a smile, say something sarcastic while calling them "loser," take another pill, and go on about my day, being sure not to slip up again.
While my mother continued her decline, my father continued to believe that God would save her.
The deacons from our church became regulars at our house, anointing my mother with oils and praying over her. It reminded me of something you'd see in The Exorcist. I didn't join them, save one time when I stood in the hallway outside. I refused to go in the room.
It was about two months before my mother died. She cried or screamed throughout the ordeal. I can only imagine what was going through her mind seeing several men surrounding her bed. In all likelihood, she saw the faces of now strangers she'd known for years, and it freaked her out. My father tried to calm her.
"We're just praying for you to be healed, Dolly," my father said. "It's okay. No one's going to hurt you."
Even from a distance, I couldn't watch it any longer. I wanted to stop them. I wanted to protect my mother. Instead, I did what I always did. I ran. In the dark of night, I ran down to the river behind our house and screamed. I began to cry.
What if it's not working because of me? I thought. Maybe if I believed, it would work. What if it's all my fault?
I fell to the ground and began to shake. "Please. Please save her. Don't punish her because I lack faith. Please bring her back to us."
My mother died two weeks before the junior prom. My friend Jill and I had just bought dresses. We were so excited. Mine was green, like my mother's eyes.
I was in my room staring at the dress when my father appeared. He never ventured upstairs.
"Hi, Dolly," he said as he opened the door. He looked at my dress. "You're going to be so pretty in that dress. Ma would have loved to see you in it."
She wouldn't have known the difference.
"Yeah, I don't think I want to go to prom," I said. How could I ever do anything normal again?
"But you've been so excited about it," he said. "You need to go. You need to be with your friends and have a little fun. You need it."
I went, and it was magical. For the first time in a long time, it felt like I would be okay.
I'm 19 and sitting in my therapist's office. I can't afford actual therapy, so I'm in the counseling center at St. Thomas, the private university I attend in St. Paul, Minnesota. My "therapist" is a PhD candidate named Kevin. I can't complain. It's free.
After a couple of months of sessions, Kevin starts pressing me about my fears.
"Okay, you mentioned a while back that you're afraid you'll have your mother's fate. Do you want to talk about the Alzheimer's fears?" he asks.
Reluctantly, I tell him I've been doing some reading about it and I'm convinced I'll have to accomplish everything I want to in life by 40 because, from my reading, that's when early onset Alzheimer's strikes.
"They even have a test you take to see if you have the gene," I said. "I don't have health insurance, but I guess it's not covered by insurance anyway, and I'm broke, so I'll probably never know until it happens."
Kevin asks if I want to know. I shrug. I hadn't thought about it. I was more amazed that the technology existed to test for something like that.
"I don't know. I mean, if I know, then I know and I can prepare," I say, thinking out loud. "But then I'll really have Alzheimer's on the brain, and I don't know that I want to live my life that way, but I guess I am already, so..."
It has been 20 years since my mother died. I still don't know if I'll develop Alzheimer's. I never worked up the courage to be tested. Regardless, I don't want to know. In all likelihood, my mother's form of Alzheimer's wasn't genetic. As far as I know, no one else in my extended family had the disease. In the 1990s the research was scarce, and assuming it was hereditary was common. It doesn't keep me from worrying. I will always think about Alzheimer's. It's a part of my legacy now.
As I edge closer to 40, that magic age I was convinced as a teenager would be my "do or die" age, the early onset worry peeks through more often than I'd like. If I forget something at the grocery store, I sometimes wonder, "Is this it? Has it come for me?" I overthink those moments. Sometimes I overthink to the point of paranoia, resulting in an anxiety attack that takes me a couple of days to recover from.
Due to my fears, it was never my intent to be married or have a family. While I did take the plunge into marriage, we won't have children. I won't put a child through what I went through. I've made a pact with my husband that if I'm ever diagnosed, he'll put me in a home and move on with life, and/or help me overdose on sleeping pills to put me out of my misery. While we shook on this pact, I doubt he'll follow through. I know I wouldn't if it were him.
If I do follow in my mother's footsteps, I will accept my fate with reluctant but open arms, and I will fight for as long as I can until the spark goes from my eyes.
Mar Andras is writer in Philadelphia. She is currently working on her first memoir. Follow her on Twitter @mar_andras.
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