Early Onset Alzheimer's: A Daughter's POV
Originally published on the Huffington Post Blog, I share my experience with the horror that is Early Onset Alzheimer's.
It was February 2003. I was an innocent fifth-grader without any real cares in the world. Because really, what problems or worries do elementary school students have? My life consisted of Avril Lavigne, Eminem, Neopets and looking forward to graduation and beginning middle school. Fast forward about a month and my whole life had been turned upside down. My dad, Ed, was suddenly in the hospital, rapidly declining from lung cancer which had spread to his brain, spine and various other body parts. The irony of it all was that my dad was a health nut obsessed with exercise, taking vitamins and insisting I take them as well. Because he also developed skin cancer years before I was born, he would slather sunscreen on me in the summer, including on my eyelids. As tears formed and I felt my eyes burn, he would say, "Your eyelids are the thinnest skin of anywhere on your body".
I'll never forget that Sunday on March 9th when I came home from Hebrew School and found members of my dad's family who lived far away in our den, crying. From that moment on, I knew my life would never be the same. I was numb. I knew this ending was inevitable, that my father had been on the brink of death for weeks, and so logic seemed to overpower the pain brewing inside of me. Everyone always tells me how much my father adored me, as if because he departed this world earlier than he was supposed to, people fear I never felt his love. They don't know that, in one way or another, my father gave me the strength I needed to cope with the newest tragedy that would slowly make its way into my life and rob my mother of her spirit.
In 2008, I was a sophomore at Millburn High School in northern New Jersey. Again, life was smooth-sailing. My mother, Liz, and I had coped with the death of my dad, and life was as normal as it could be considering the circumstances. Our relationship, typical to teenage girls and their mothers, was not exactly pleasant. Yes, we got along but I didn't feel any real closeness; if my mom knew I described our relationship in that way, she would be heartbroken. But I was the one who didn't crave the closeness. I was 15 and more focused on my social life than developing a relationship with my mother. I think my father's death changed the way she approached parenthood. She wanted more than anything for me to feel happiness and freedom. She thought that by letting me live my life the way I wanted to, I would be a regular girl. And I definitely felt regular and I definitely felt happy.
I will never forget when my mom began to ask for my help with simple tasks that year. She suddenly always required assistance logging in to her e-mail account. I became increasingly annoyed with her every time she needed me and I was definitely not afraid to show it. "Why don't you know how to do this?!" I would yell. When she went to Trader Joe's, she would ask if I wanted anything and when she would come back empty handed, there was always an excuse. That pissed me off too. It seemed as if lately everything she was doing pushed me farther away because I would let it get under my skin. She also told me she quit her job selling health insurance because she was under a lot of stress. Later, I found out that she had actually been fired.
Being wrapped up in my own life and assuming nothing bad would ever happen to me again, I dismissed these strange, but all too increasingly familiar quirks. To be honest, I used to tell my friends the "hilarious" things my mom would do. One time she fell asleep on the couch and the phone rang. She woke up and reached for the remote thinking it was the telephone and said "Hello?" It's not so funny now.
About a year later, my family and others started becoming increasingly troubled with my mom's state-of-mind. My next-door neighbor who was also my mom's friend came to me with her concerns. She told me that my mom had come to her asking simple questions such as "How do I start the car?" and "How do I charge my phone?" Our neighbor would tell her to plug the charger into an outlet and my mom would leave only to return a few hours later with the same question. Concerned and scared, she confided in me that she thought my mom had Alzheimer's. At that time, I don't even know if I could really comprehend what that word entailed. I had heard this theory before from my mom's brother who is a doctor. He assuaged my fears by telling me it was a possibility but we shouldn't expect the worst because my mom was young and healthy. Plus, there were no previous family members who had suffered from the disease and it is incredibly uncommon.
Stress, depression, menopause and thyroid issues were all blamed for my mom's problem. The lack of information the doctors could provide us with was incredibly frustrating; there was no clear answer as to what was going on and nothing was getting better. My mom also knew she was unwell and would confide in a friend or a family member that something was off with her memory. Neurologists from all over, including the prestigious Columbia University Medical Center, provided us with vague answers. Finally, in September 2010, it was concluded that my mom was suffering from early onset Alzheimer's. This disease affects people below age 65 and only accounts for five percent of all Alzheimer's cases.
At this point, life felt like a dream. I would tell myself there was no way that my own mother was going to die sooner than expected. When did this happen? How did it happen? Why her? Why me? The questions never ended. Sometimes I would cry until I couldn't breathe; other times I was numb again, not believing that this was true. Because, really, how could it be? I already lost one parent and now, at age 18, it was happening again? Would neither of my parents attend my wedding nor cradle their future grandchild in their arms?
Nobody could believe that this gentle, soft-spoken woman could be cursed with such a terrible diagnosis, especially Grammy (my mom's mother), Bernice. She was 83 at the time of the diagnosis and would confide in me that she would do anything to trade places with her sweet daughter. My mom, still able to recognize what was going on, insisted that we don't tell anyone as she was embarrassed of her condition, but even so, everyone noticed changes in her. As a result, slowly but surely, many of my mom's friends stopped calling. Although I was angry with them, I also couldn't blame them; she eventually couldn't hold a conversation because what she would say made absolutely no sense. She would speak to her boyfriend on the phone, think it was another man "she had just met" and neither he nor I could convince her otherwise. Of course these people eventually faded away because it became impossible to hold a relationship. But still, I thought, shouldn't they at least try? Wouldn't they feel guilty disappearing from her life without as much as a goodbye? I was very angry with many people that had been in her life and had not even bothered to visit.
Things were progressing extremely fast. My mom would tell me and other close family members that she wanted to kill herself. At the time, I was scared to be alone in the house with her because she would get so frustrated and angry about what was happening that I didn't know what she would do to herself. For example, numerous times my mom had asked me what my name was, where I lived, and other basic questions that nobody should have to hear from his or her own parent. She would ask me questions like: "Who is your mother?" It was as if we had never met before. I would answer her, pleading, "You're my mom!" but she would just nod her head and ask me again. As her condition continuously declined, I realized that the confusion was just the beginning; it was extremely frightening and strange to see my mom speaking to her reflection in the mirror, also known as her "friend." The first time she did this, my mouth hung open in disbelief that she could not even recognize herself anymore. I was scared. Nonetheless, I should have been happy my mom was still finding ways to enjoy herself. Her and her reflection would laugh together, and have conversations for long periods of time. That's the thing with Alzheimer's: some symptoms don't appear in everyone, so I had never read about mirror-talking on the Internet -- especially the part when, eventually, the person would get angry or scared of the reflection because she wouldn't leave. Although this was frightening to witness, this behavior decreased and worse behaviors began to surface.
Out of nowhere my mom stopped talking completely. Then came the extremely terrifying and upsetting realization that I would never hear her speak again. Sometimes I would sit at the edge of her bed while she stared up at the ceiling and I would talk to her, cry, and beg for her to look at me. Not only would she not talk, but she began to violently scream in the shower when she was getting bathed. Waking up to this in the morning was absolute torture. In order to avoid these scary wake-up calls, I slept more and more at my boyfriend's house and spent less time at home. Guilt was something I had felt quite often growing up with a single mother, but especially since her diagnosis the feeling began to consume me. As much as I wanted to spend time with her before the situation became more fatal, it was agonizing to be in her presence; I loved her but I also felt angry and irritated and confused about why this was happening to the only parent I had left.
One early summer morning around 7:45 AM, while my mom was being bathed, there was a violent banging at the front door. As I rubbed my eyes while making my way downstairs still half-asleep, I opened the door to five policemen who started questioning me as to what was going on inside. I peered past them and saw two women standing on the sidewalk watching the show. I knew they had called because it had sounded as if my mom was hurt but I fumed inside at their nosiness; it almost felt as if I had to protect my mom although they called out of concern. I especially didn't want people to think violence was taking place in our house because my mom would rarely yell when she was herself. When one officer asked me to explain the situation, I broke down in tears. After they asked their questions and left the sad state that had become my home, I continued to cry; I cried about what our lives had come to be. I told myself that I had missed my chance to be close to my mother when I could. My heart was breaking more and more every day, it seemed.
A year went by with still barely any word out of my mom's mouth and I figured that this was the beginning of the end. How could it not be, I would ask myself? She couldn't even use the bathroom properly, let alone at all, and had basically been reduced to an infant By now, I had completely accepted the circumstances and was, once again, living life as normally as I could. Or had I just become numb to the pain? I'm not sure if I truly made a decision about how I would choose to feel or if I was just totally accepting of the situation and free from agony. Either way, I decided the only method of coping was to truly enjoy and take part in whatever opportunities came my way. I landed a dream-come-true internship with my favorite company, The Row, and I overcame my fear of flying to travel with classmates to London; my mom wouldn't have wanted it any other way. In high school, when I would feel guilty leaving her alone in our house to go hang out with my friends, she would laugh and push me out the door as if me feeling that way was absurd.
I think my parents would be happy to see how much they have inspired choices that I make. Although my dad is not physically here to see it, and my mom is not mentally present to understand it, they both deeply inspire me even in the smallest ways every day. Much to his liking, I take care of my skin and sunscreen my face every day. And yes, sometimes even on my eyelids. And in order to keep my mind clear and fully present, I avoid drugs and alcohol; why would I choose to mess with my head when I've witnessed my mom's brain fail her? Despite every ounce of sadness I have felt over the past eleven years since my father's passing, and especially recently with my mom's progression, I am thankful for the fact that I have found happiness and health along the way.
Although I continuously contemplate as to why these adversities have been struck upon my family, I can never come up with a truly acceptable answer that brings me peace. Both of my parents were fantastic people; it is no wonder God wants them both up there in heaven. But if this were true, then why do all of these terrible situations continue to affect me? What is the meaning behind all of this? And is there truly a meaning or am I attempting to justify terrible luck? Maybe if I had never faced these hardships, I would not be able to truly value those who have remained a constant strength in my life. I could spend my entire life questioning why these circumstances have befallen upon us but as my mom always used to say to me when things got tough, "it is what it is".
Through all of the anguish, I have one of the sunniest dispositions on life and more so than most people including the ones who have not experienced loss. Not only did I develop in to this strong-minded individual because of the cards I have been dealt but because my parents simply did a fantastic job raising me. I wish I could thank both of them. I will, without a doubt, tell my mom how I feel even if she can't respond how I hope she could. Maybe I will sit her down, pour my heart out, and hope for the best because, at this point, that's all I can do. I miss her and my dad more than I can explain and would trade anything in the world to have had more time to get to know them---not just as my parents but as individuals with stories, and a history.
I thought I would conclude my story by continuing to discuss the horror that is Early Onset Alzheimer's and how I was mentally preparing to eventually say goodbye to my beautiful mother. To my extremely pleasant surprise, though, this may not be the end just yet. Luckily for my family and me, my mom's quality of life has greatly improved in recent months. Before, I could only imagine what was going through her head in any given moment as she was practically mute. Now, after being taken off medication which the doctors believed was the culprit of her less-than-pleasant personality, my mom's old self shines through every day. Although she cannot usually form real sentences, the words "cool", and "nice" are regularly coming out of her mouth; on better days, she tells everyone and anyone, "You know what? I love you." or "You look so beautiful." She laughs and laughs at nothing at all and it is the innocence of her behavior that makes me love her even more. It is delightful to, once again, feel her love radiate when I walk in to a room; my mom's eyes light up, a toothy smile graces her face, and her arms open up for a hug that I've waited a long time for. As we hold each other, she strokes my hair in a way only a mother could and when we separate, she lovingly places her hands on my face. Including on my eyes and nose -- anywhere but my cheeks! Although I mourn the loss of her every day while she is still right in front of me, one thing keeps me holding on: she may not be able to express herself through the right words or call me by my name, I believe that she knows, deep down, that I will forever be her Melissa.
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