On Longevity

Y'all - it's time for the annual Alzheimer's walk again, and it has taken me ages to plant my tush at the computer and bang out a post, send emails, and kick off our coordination effort for this year's walk.

While I always derive energy from seeing so many amazing folks come alongside us -- by walking, donating, and sending messages of love and encouragement - it is also so exhausting. We feel nearly maxed out as it is, and then - attempting to sit down and carve out some thoughts about Alzheimer's caregiving means cracking open a part of myself, being vulnerable, and talking through heavyboots feelings in a public setting.

But here I am, nonetheless. I realize I could send out walk emails and updates without blog posts, and videos. But in part, I feel compelled to ensure that as I ask for your support, that I also share about why it matters, and about what this disease is doing to our family.

This year, I want to think through: longevity, language, and attempting to be a holder of memories.

First off - longevity. So much of why I struggled to sit down and process is because of the longevity of this disease, and the fatigue that comes alongside it. It is so much more empowering to care about causes that can be "won" -- and to fight fights that are shorter and hold more hopeful outcomes.

But the current reality of Alzheimer's doesn't afford either of these options. We are still here, fighting small, daily fights for Mom to find words - to convey what she needs - to find meaning.

I've had two, contrasting observations over the past year:

1. My Mom's friend are fiercely loyal and committed. Even as Mom now struggles to communicate, and has lost components that make social outings easier (table etiquette, ability to choose options on a restaurant menu, etc), her friends still call, still come. They still show up, still reply to email or text-requests for support, and have been committed to helping in whatever way they can. One dedicated friend has even suggested thoughts/plans for building out picture or communication cards, so she can keep communicated Mom after her language is gone. Observing the commitment of so many amazing women has been moving and has bolstered our immediate family time and again.
2. We're all a bit lost with how to grieve what Mom is losing (and how we are losing certain aspects of our relationship with her), while still trying to fight for her presence and her personality as best we can. We keep trying to take her to things she likes -- out hiking, for a meal at Chick-fila, to watch a UK basketball or Redskins football game on TV. But as she gradually struggles to follow sports games, or has begun forgetting the activity within a few minutes of doing it - this becomes so much more challenging. I know I feel the emptiness and hopelessness on a daily basis, and am constantly confounded by meaningful ways to grieve while also loving and celebrating my strong, resilient Mom - who stands in front of me each day.

More than anything, Mom seems to crave time and presence, which is something we are all struggling to give amid our busy days. I am trying to slow down, and have found some well of patience in the past one-to-two months that had been lacking earlier in the year. 

The other day, in one such moment, Mom was trying to tell me she needed something. So often at the outset now, she'll struggle to find a single word, and will give up in defeat. 

"You can do it! I'm not in a rush, we'll find it..." I said, coaxing her on. 

She motioned, pretending to wipe her arms, and pointing to a direction I sensed indicated downstairs.

"You need soap?" I asked.

"YES!" she exclaimed. She jumped as she spoke, and her eyes danced as they always do when she is excited, or  claims a simple win. 

She clasped her hands together, quietly exclaiming, "I did it!" She stood there, beaming -- reveling in the moment.

She was so proud of herself; and in that moment, my heart swelled and I felt tears well up. These are the small victories we encounter amid the longevity. I am grateful for them, as they sustain us down a long and challenging road.

Thank you for walking alongside us on this journey. If you're able, we'd love for you to walk with us again this year - details below and link here.

Lexington Walk to End Alzheimer's

Saturday, August 26

Registration, 9:30; Walk begins at 10