Jackie & Me

I always loved running errands with my mom. I think it was because I really just loved being around her and having one-on-one time. I have this early memory of us in our Honda Odyssey on a bright Summer day when I was about seven. The exact details are a little fuzzy but we are getting back into the car after she had dropped something off at the bank in our town. I don’t remember what prompted her to say this but she looked at me, one leg in the car and the other on the pavement balancing her purse on her knee as she dug through looking for something. She said, “One day you’re going to be a teenager and running errands with mom will not sound as fun anymore” and smiled at me in the rearview mirror as I laughed and promised her that would never be true.

As moms tend to be, she was right. Well, partially right. High school rolled around and my priorities shifted to my friends and schoolwork. Our errand runs changed to late night Bachelor and Married At First Sight binges. One thing remained the same- my mom was still my best friend through and through. It wasn’t until my junior year of high school where there felt like there was a shift between us. My incredibly gentle, kind, and patient mom had begun to have mood swings and somewhat erratic emotional responses to otherwise regular occurences. Initially, we rationalized this as intense menopause symptoms and she began scheduling appointments with her primary care doctor. We’d soon realize that these appointments treated only the symptoms, often bandaged up with an increase in her Lexapro prescription. After all, my mom had been on Lexapro practically my whole life (although I never knew this until I was much older). She had experienced post-partem depression after the births of my sister and I and Lexapro helped her to feel better. As my mom’s Lexapro prescription kept increasing, so did our concerns. What began as mood swings here and there had snowballed into matted hair, wrong turns on the route home, and piles of clutter building up around our typically tidy house.

My dad eventually went to one of my mom’s appointments to help advocate for more answers. The Lexapro wasn’t solving anything and the dosage being prescribed was *borderline* malpractice (more on this later). After my parents laid everything on the table, my mom’s general care doctor finally seemed to recognize that this was more than just a bad bout of menopause. This appointment began what would be a long, frustrating, and confusing process of referrals to neurologists. 

Somewhere in the midst of this, we took a family trip to Punta Cana for New Year’s. I was now a homesick freshman at Indiana University and was thrilled to be home for the holidays. I drove back the second my last final exam was submitted, anxious to get home and spend time with my family. I pulled into our driveway sometime in the afternoon, expecting to burst through the front door and give my mom a big hug. Except when I walked in and threw my bags down, the house was quiet and in disarray. Our usually tidy home was a mess. I look in the kitchen and the faucet is running with today’s newspaper in the sink, now a sad soggy mess not dissimilar from how I was feeling at that moment. The tears came immediately and I sank to the floor, pulling my knees to my chest. In some ways, I wonder if I knew then. Maybe not exactly of what was to come, but I knew our lives were about to change. The holidays came and went and we pressed pause on my mom’s appointments to enjoy our *rare* family vacation. We had the best time just being together. There are these moments that just stick out clear as day in my brain from the past six years and this was one of them. It was one of our last dinners before heading home and I was sitting across the table from my mom, my dad seated next to her. I watch her lift her fork to take a bite of her meal except she’s holding the fork backwards with the tines in her palm. My dad gently took the fork from her and repositioned it in her hand as my siblings and I watched carefully so as not to make her feel uncomfortable or embarrassed. She was flustered with my dad softly saying, “It’s alright. We are going to figure this out when we get home”.

My mom was diagnosed with Early Onset Alzheimer’s in September 2020. She was 56 years old. We don’t have a family history, I didn’t know anyone with the disease, and I definitely didn’t know what Alzheimer’s even was. Wasn’t Alzheimer’s an old person’s disease? How could my beautiful, loving, busy, compassionate, 56 year old mom have Alzheimer’s? I was in my childhood bedroom when I heard my parents get back from the appointment with the 3rd neurologist. I heard the garage door slam followed by my mom’s sobs in our kitchen. And I knew. I didn’t need anybody to tell me. I don’t remember much of the months that followed. I don’t even remember anyone actually telling me that it was, in fact, Alzheimer’s. I cried in my new room in my sorority house a lot and spiraled during late night phone calls to my friends from home. The internet was my worst enemy, eventually not even being able to Google “Early Onset Alzheimer’s” without breaking down. I went home every other weekend, the guilt of being away gnawing at me whenever I was back at school. I jumped into a long-term relationship. My life felt completely different but more so, so was hers.

I’m comfortable to admit now that college was most certainly not my best years. I spent a majority of my time bouncing between the guilt, loneliness, and feeling like I wasn’t relating to my friends. I was far from the best version of myself and my brain felt like it was constantly in fight or flight mode. It was not that I didn’t have support, but there was nothing anybody could say or do that would change reality. My reality was that I wanted to hit fast forward to graduate and spend more time with my mom. Eventually that time came and I moved home, found a dream job, and helped my dad take care of my mom. For the first couple of months, my dad and I were both working full time while also being caregivers for my mom who now required full time care. This year will always be the most precious to me- I got to take care of my mom after she had spent her whole adult life taking care of me. 

Eventually we got support through the form of our amazing caregivers. We were lucky enough to be able to keep my mom at home and were blessed with the gift of the most amazing, capable, compassionate caregivers. This was a huge, terrifying step for all of us, and required a lot of adjusting for my mom. At the core, our #1 priority was protecting my mom’s dignity. We didn’t do a perfect job by any means, but we were fierce. We did as much as we could with her while we could, oftentimes saying that “every day is going to be the best day we have”. When you’re up close, the day to day changes become less and less significant- they start to blur together. I explain this to people using stairs- my mom’s symptom manifested as a series of sudden drops followed by plateaus and sometimes even steps forward versus a smooth decline. My brain conditioned itself to receive and package up these feelings in a sort of assembly line- her symptoms would get worse, we would handle it, and then things would level out and remain steady for a while. Realistically, I knew that Alzheimer’s is a terminal disease, but my brain never let me go there. 

That’s why when her neurologist recommended palliative care in October 2024, I lost it. I was in shock. I felt like my world was crumbling apart and sometimes it felt like my chest physically hurt. This will sound dramatic and it was, but I truly believed I would need to be hospitalized and sedated when this time came. I had only experienced hospice through the lens of losing my grandparents in which case their hospice care was just days/weeks long. We didn’t know what we didn’t know- this was all new to all of us. And eventually we fell back into our old routine, my mom would get a little more sick, but we always handled it and things steadied out. Palliative care really just gave us the extra support we needed to make sure my mom was getting the highest level of care possible. In reality though, she was getting weaker and weaker. When she began pocketing, and on rare occasions, choking on food, we made the decision to begin full hospice treatment on January 2nd, 2026. My brain still struggles going back to that time. When her hospice bed was delivered, the equipment tech wasn’t even halfway through the door with it when I felt the panic rising in my chest and tears falling. There were a million thoughts and feelings all at once but for some reason, I focused on this bed. And why did it have to be such an ugly shade of brown?

After fighting to stay with us for almost six years, my mom passed away on January 17th, 2026. To be completely honest, I write this two months later and the last two weeks of her life are still too hard for me to write about. Maybe I’ll feel different some day. I am finding that writing these posts is already helping me to organize my thoughts throughout the grieving process (emphasis on the *process*). My goal in starting this blog is to share my experiences as a young person navigating having a parent with Early Onset Alzheimer’s and hoping it is relatable to some. When my mom was first diagnosed and I could feel myself spiraling over the unknown, I scoured every corner of the internet to find content from others in our position that I could seek comfort in. What I quickly realized is that there are thousands of resources out there about Alzheimer’s and other dementia related diseases, but very few on Early Onset and even fewer that were presented through a relatable lens. If I can help provide some small form of momentary comfort to someone else in my position, then it feels like my grief has a purpose.