Community Matters

The case for leaning in, when you feel like stepping out

After mom had passed away from Alzheimer’s, the last thing on my mind was getting involved in the cause. It felt like our family had emerged from a tornado that had upended our lives when my dad had died, then kept us in a chaotic whirl, scrambling to figure out the next right thing for mom. At the very least, I needed a break.

The thought of joining anything Alzheimer’s related felt similar to when my kids got through Driver’s Ed. It was so excrutiatingly inefficient that some parents in the mix contemplated starting their own, competing Driver’s Ed service, while others vowed to lead the charge to make it more humane. But then we each got through it and thought…nah. Not my problem anymore. At least not for now. 

Also, my inner toddler was just plain MAD. This disease had taken my mom away from me and I didn’t want anything to do with it. Everything about it felt like such a bummer—a devastating disease over which you have no agency, for which you may be genetically predisposed, and that has no known cure. Yeah, sign me right up to be an ambassador for that!

SUPPORT? WHAT SUPPORT?

Truthfully, I also didn’t understand how community could help others, or how it could have helped me. When my mom was first diagnosed with Alzheimer’s I felt totally isolated. This is no dis to my close friends who love me and loved Nina. They did what they could to make my life as good as it could be, but even if they had tried to help me navigate Alzheimer’s I was reluctant to share that burden around. I preferred to use time with friends as an escape. My spouse was already getting the worst of my tired, sad, grumpy, last-minute emergency traveling self, and I tried not to pile more on him.

I was very fortunate to have siblings, though we offered limited perspective to each other as we leaned together like a teepee, keeping our heads down and getting through each day. We muddled along, figuring things out the hard way, then figuring them out again a few months later when invariably everything changed. Even if we had wanted to talk about it more—and we usually didn’t—we wouldn’t have known what “support” we needed for the countless imperfect decisions that had to be made.

When the neurologist diagnosed my mom, he gave us a paper with some support resources offered by the Alzheimer’s Association. One was a hotline for information. Just the name of it felt daunting. Hotline. Those were for crises or suicide. I imagined connecting with a stranger on the other end and feeling even more alienated when I could not pinpoint an urgent need. I did call once, but, as expected, felt stupid because I didn’t know how to articulate what I was feeling or what I should ask. I saw it as a one and done kind of thing rather than as a resource that I could revisit as my needs and questions evolved.

DIVING BACK IN, WITH A PUSH

About a year after Nina passed away, Kathy Harvard, the chair of our community’s annual Walk to End Alzheimer’s reached out and gently convinced me to get involved with the event. Her husband had suffered from early onset Alzheimer’s and she’d become a warrior for the cause (Kathy is my sensei and we’ll come back to her story and her work plenty in this space.) I was less than psyched, but she convinced me that this would be more than an obligatory donation to a lost cause. She even offered up three tiers of hope that would keep growing through the work of the Alzheimer’s Association: early diagnosis, improved treatment and preventative measures. (All have indeed made massive gains in the past four years, which we’ll also discuss in detail right here.)

Somewhat reluctantly, I climbed on board after hearing her bottom-line pitch: Why not help raise money to fight the disease? Why not use your own hard-earned experience to help make someone else’s a little less hard, or at least less lonely? Selfishly, I figured the more money I could help raise for research, the less likely I would have the same experience as my mom. It was the second part of the deal, however, that held an unexpected reward.

One way I contributed was by writing stories about what connected people to the cause. Every time I interviewed someone about their experience, I watched them go from reluctance to ease to relief, just during the course of one conversation. Talking about the Alzheimer’s journey, even well after going through it, was helping recast their experience. Going back helped them remember touching, meaningful and even funny moments with their loved ones, and pull those memories out of that black hole of sadness. 

As I heard these stories—each unique and yet with so many similarities to my own—I was also recasting my own experience, revisiting things I’d missed along the way, or that had been scattered and lost in the tornado.

LOOKING BACK, LIGHTENING UP, MOVING AHEAD

Part of the preparations for the October walk is setting up information tables at various events to entice people to join the walk or the cause. Often, people pause by the table with a deer-in-the-headlights look. It reminds me of how I felt before I could talk about any aspect of the Alzheimer’s journey with the ease of normal conversation. Their expressions soften as they let out a stray snippet: my mother passed away three years ago; my grandmother had it; my dad is just showing signs; my parents won’t accept help; I was the caregiver of choice for three years; my sister and I do the walk every year to remember our mom.

Sometimes the statement expands into the story. “The pandemic was so hard,” said one woman, tearing up when she recalled her experience with her mom, four years later. I push that 24/7 Helpline (not hotline btw: 800-272-3900), and the brochures with all the free support services offered. But I also just let them talk, and see how that feels. I hope it helps them move past the weighty mounds of anger, sadness, shame and guilt—all those fun emotions affixed to the things they did/did not do, or felt/did not feel in the heart of the storm. I hope it leads them to a place where they can uncover and unpack some good memories.

Even if I had known about the cause and the walk when I was in the thick of the struggle, I may not have had the bandwidth to sign on; but, I sure could have used the community. “Support” doesn’t come from a brochure, but it does come from a network that turns this particular brand of isolation into a bond. I never expected anything Alzheimer’s related would make me feel uplifted with camaraderie and hope. But it did, and I do.

Now, that’s my pitch for leaning into the Alzheimer’s community and trying to build on it. That’s what this place is about. There’s no grand plan other than making a space to talk about difficult stuff, learn a little, laugh a little, and feel a little better about everything, including ourselves.

UP NEXT: A LITTLE HUMOR IN THE MIX

Full disclosure: my sad song of loneliness isn’t entirely true, because I did have one consistent source of pure relief during the toughest part of mom’s illness. I took regular walks with my friend Cindy Pierce, whose own mom was also in the late stages of dementia. Cindy can pull comedy out of tragedy like a magician pulls a quarter from an unsuspecting ear, and now she’s doing so on stage with dementia. With that in mind, we’re lightening it up a little next week and looking at how people are bringing humor to the Alzheimer’s conversation. Conveniently, that serves up an opportunity to romp through the topics that will be in the mix here in the coming weeks.

Thanks for reading, and for commenting with any thoughts. I hope to see you back here next week!