by Nelly Sandeep
If you asked me about how my life has been the last few years, many people would expect me to say that it’s been phenomenal. I got my master’s degree, had great opportunities at work, got my clinical license, married my boyfriend of 8 years, and adopted the very best dog. What some people don’t know, however, is that throughout all these major accomplishments/life changes, my best friend, my mom, would be facing her hardest years yet. This didn’t stop her from being by my side the entire time, but the definition of “by my side” would change quite a bit.
Growing up, my mom and I were always very close. As the youngest child and also her only daughter, my mom and I had a unique relationship. I remember being teased for how close we were. At times we felt a lot more like sisters than parent/child. As I continued to grow up, she held a bigger and bigger role in my life, eventually leading to being the only person who could comfort me in my darkest moments and the person I would laugh the most with. My mom didn’t always have an easy life and as I grew up, I got to learn more about that. She started to become vulnerable with me too, sharing parts of herself with me that she had not shared with anyone else. During this time, she taught me many things, but one of those things was strength and neither she nor I knew how much I would need this in the coming years.
My mom started showing signs of young-onset Alzheimer’s in 2016 when I was just 20 years old. My boyfriend (now husband) and I noticed it first and if it weren’t for him, I would have thought I was crazy. In fact, I begged my family for over a year to hear my concerns and take her to the doctor. In 2018, my father started noticing things and brought my mom to a neurologist. This was not a great experience for many different reasons; therefore, she did not return for further testing and the results of the testing that was completed were ignored. Over the next year, my father would face scrutiny amongst our entire family for pushing my mom to see more doctors. My mom was telling us all that it was simply “anxiety” and my dad’s behavior was stressing her out or making things worse. For the first time in my life, my mom and I were not on the same page. I didn’t know what to do other than to sit back, stay silent, and try to convince myself that Mom was right, it was just anxiety. My dad, however, did not give up. One thing led to another, my mom saw a new doctor, additional testing was done, (testing that could not be ignored) and my mom received an official diagnosis of young-onset Alzheimer’s in September 2019.
This timeline was odd for me. I had just graduated from my master’s program in May, finally moved in with my boyfriend of 5 years at that time after spending 2 years doing long distance in June, and I had just started my first full-time job as a therapist. I felt like my life was finally starting and I was thrilled. But when I said goodbye to my mom as I left to move from NYC to Maryland while she still lived in our home in New Jersey, she cried, which was odd for her. This cry was especially weird because it was different, she seemed scared. I comforted her but was very confused. My first official night in my new dream apartment with my boyfriend was spent with me crying, missing and longing for my mom. It wasn’t until he encouraged me to call my mom despite me not wanting to wake her. Eventually I did and she was also awake, missing me. We spoke little words to each other, but I think we both knew at that moment that something was not right. I always felt like we connected on a different level, and I think we both realized that things were going to be changing drastically in the near future. Neither of us could admit this to each other and yet we found a way to still get support from one another.
Since my mom’s diagnosis, everything in my life is a little grayer. The biggest moments in my life aren’t quite the same because although my mom is still here, she is suffering in ways I never imagined and is not the same woman who raised me. One of the hardest parts of navigating this diagnosis, however, was not having my mom by my side as we planned my wedding. My wedding was a day my mom always dreamed of. When she helped plan my brother’s wedding, I realized how much this meant to her. I promised her then that she would take an active role in my wedding. My mom and I have very similar tastes and values, so I knew her planning it would be everything I wanted. The way this turned out was very different, however. I tried to involve my mom as much as possible in wedding planning, but it only stressed her out, overwhelmed her, or confused her most of the time. This eventually led to me avoiding her inclusion in the planning and instead just telling her exciting parts, which was only exciting to her half the time.
There is one moment that sticks out to me the most, however. It was just a few months before our wedding, and she was finally trying on the dress she was going to wear. Every time she saw this dress, she forgot we picked it out and fell in love with it all over again. This time was different though. I zipped her up and she turned to the mirror. I watched her entire face change as she said, “Nelly! Oh my god. You’re getting married! And to a wonderful man.” She quickly turned around and hugged me. This hug was different from her recent hugs, which were weaker, sadder, and less warm. This hug was a true hug from my mother. This moment encapsulates what this disease is. My mom has changed quite a bit, but the pre-diagnosis version of her still exists. It just decides when it wants to come out, and it decided to come out here. For a brief 2 minutes, I got to have my true mom back, and I couldn’t be more grateful. That moment gave me the strength I needed to get through what I felt was one of the most important days of my life without my true mom by my side. I knew she was somewhere in there with the giant smile that she showed me when she tried on the dress, despite her showing up to my wedding venue and asking me what we were there for. And that moment was a reminder that this disease has taken a lot away from my mom, myself, my family, and all the lives my mom has touched. This disease has taken a lot away from this entire world, because my mom was special, and this world should have been honored to have her as part of it. But this moment also reminded me that this disease can take away as much as it wants but my mom, my very strong, funny, beautiful mother, will always be there inside, whether I can see it or not.
