Losing My Mom, Looking for Myself

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Every day I’m searching for a way to feel close to my mom again. I still haven’t accepted that she’s gone, and that I’ll never experience another moment with her again. Fuck.

My mom was diagnosed with early onset Alzheimer's a couple years ago, in the summer between my sophomore and junior years in college, I think. At the time, I didn’t really understand the scope of the disease and I wasn’t prepared for how fast it was going to progress. I have a lot of memories of college and my life in New York, but I can’t remember the moment when I learned that my mom had been diagnosed with Alzheimer's. It came at a time when I was just starting to find my bearings in the city. I didn’t want to go back home to take care of my mom; I wanted to keep hustling in New York. So I did.

It took several months for my grief to catch up with me. I was asked to free write during a workshop and decided to write about my mom for the first time. Putting my feelings into words somehow made everything feel real. The facilitator unexpectedly called on me to share. I was hesitant, but gave it a try. I started reading off my paper and burst into tears. I felt so embarrassed. Everyone in the room must have been very confused. I hadn’t shared anything about my mom previously, in fact, I barely even talked about her with my close friends. To this day, I haven’t been able to talk about my mom in public without ending up in tears.

There’s a lot I still don’t know about my mom and her battle with Alzheimer's. But I remember how sharp she used to be — when I was younger, she would wake up every morning at 5:30, pack my lunch, watch the news and wake me up in time to get ready for school. Every evening she cooked dinner and cleaned the dishes. Every Sunday she cleaned the house. Her whole life had been dedicated to serving her family, but she rarely accepted help from others. Alzheimer’s changed that. For the first time, she was truly vulnerable. She had to rely on others to walk, eat, use the bathroom and clothe herself. I started to see a beautiful softening take place in her. It was the first time I had seen my parents kiss and hold hands; it was the first time she told me, “I love you.”

It’s nearly impossible to fathom the experience of someone with Alzheimer’s, but it was even more of a challenge to read my mom. She always kept such a strong face to keep people from worrying about her. She hated feeling like she was a burden to others so she greeted everyone with a joyful smile, and always assured us that she was fine. I know that was her way of protecting me, and that it was one of the only ways she felt like she could still be a mom to me, but I wish she hadn’t been so afraid to ask for what she really needed.

In early April, it was clear that her days were limited. Getting on the plane to return home was one of the hardest things I’ve had to do. It felt like I was walking into hell. There is no hope with Alzheimer’s disease. Researchers haven’t found a cure and no one has ever survived it. When taking care of someone in hospice, you receive a small booklet entitled, Gone From My Sight, which guides readers through the process of death. I read the pamphlet dozens of times, scanning each sentence to make sure I didn’t miss a single detail. I tried to pinpoint exactly where my mom was in the process to prepare myself for her final moments. In her last days, my mom was unresponsive, but knowing that hearing is the last sense to deteriorate, I continued to talk to her. I stayed up until 5am to watch her through the night, but one evening I accidentally drifted off around 1:30am. After a few hours of sleep, I awoke suddenly at 3:45 am. I sat up, and saw immediately that she had passed away. I had once read that people have some control over the moment they leave, and even though I wanted to be with her until the end, I feel like she waited for me to fall asleep. Protecting me, one last time, by slipping away silently, as I lay sleeping on the couch beside her.

I really hope that the fog of Alzheimer's made my mom unaware of her fear and pain, or at least clouded it. But there’s no way she wasn’t terrified. The thought of that makes my eyes swell up, but I hold back my tears because I don’t want to explore the depths of that sadness and guilt quite yet.

Returning to New York--to work, to my apartment, my friends--has been hard. Nothing feels the same. Having lost my mom is forcing me to grow up faster while also bringing out the child in me again. I’m feeling how hard it is to just…grow up. I wish I had heard the clock ticking sooner. I have a small framed photo of my mom in my room. Every time I look at it, I just shake my head in disbelief. I still can’t believe that I’ll never see her again.

Nasrin Jafari