More Than Memory Loss

Alzheimer's is a thousand little heartbreaks

I spent this week in Tucson with my family on vacation, so today’s update is late and brief!

I continued revising my sample chapters on the flight down to Arizona and whenever I had time in the mornings before my daughter woke up. I also stayed up past midnight one evening making a list of publications to pitch and their guidelines for doing so. Some publications want a brief pitch, while others want to review submissions on spec, which means they want to read a completed article or essay up front. I’ve taken the lack of response to my first pitch as a “no” and instead started writing the essay on the flight home so I can submit it on spec elsewhere.

Our trip was lovely—full of sunshine, warmth, and family adventures at the Arizona-Sonora Desert Museum, Sabino Canyon, and the Loews Ventana Canyon Resort, where we enjoyed the beautiful pool thanks to day passes we purchased through Resort Pass. Our Airbnb had a pool, but it wasn’t heated and my daughter really wanted to swim. The resort was a dream! I feel very lucky we had such a fun time.

Real life came knocking

On our last morning in Tucson, I received a report from my mom’s doctor visit this week. (A geriatric physician stops by her memory care facility once a month to examine several patients.) The report said my mom is still quite stable in the end stage of Alzheimer’s, though any significant decline will trigger hospice (again).

It also noted her current stage on the FAST scale—the functional assessment staging tool for dementia—and it said 7E: “Can no longer smile.”

I always knew this was coming, but it absolutely broke my heart. My mom’s ability to smile was the last way she was able to communicate with us. Even just a hint of smile from her made my heart soar. Knowing I may never see it again is just devastating.

In 2023, when my mom began hospice care and it seemed like she would die within weeks, it felt like a relief to have an end to her suffering in sight. Then she was discharged from hospice, and I wrote, “All of those most agonizing steps of dying from Alzheimer’s loom before us.” Here we are, entering a new level of this nightmare.

The most common question I get about my mom is whether or not she knows who I am. I don’t think she’s recognized me for a few years now. But that’s not the part that hurts the most; this shit is. I don’t care if she recognizes me as long I know she’s able to experience some joy, however brief or miniscule. I’ll have to work very hard to believe she’s still doing okay in her failing body if she has no way to express herself.

I haven’t seen my mom since January 25—the longest I’ve gone since the pandemic—due to my daughter’s dance schedule, my terrible cold, and travel. Missing her has made me feel extra raw these past 24 hours. I look forward to seeing her tomorrow, but I’m also a little scared about how she’ll look after a month of not seeing her.

The good news is this morning, after I thought, “I wish I had more photos of Mom smiling,” I looked at my camera roll and realized I have so many.

I can draw from these little pockets of joy and connection when I don’t know if I have the strength to see this journey through to the end. I have to hold onto the good memories for us both.