Why We Walk Week 1: Why it's hard to talk about Alzheimer's (aka: being honest and vulnerable on the internet is hard)

{our 'teensy bit of dread' faces}

Every year when it comes time to gear up for the Alzheimer’s walk, a teensy bit dread wells up alongside the enthusiasm and energy I derive from speaking out. While I am always uplifted by the fundraising process and the gathering together on walk day, trying to share about the experience broadly on the internet is a challenge. In part, I think it requires that our family open up a part of our lives, forcing us to be vulnerable and candid in a way that makes me uncomfortable.

One of my greatest coping mechanisms has been the discovery of the power of compartmentalization. I focus on the tasks at hand and shunt off the emotional waves and hard days. I often don’t really think about the struggles and darker side of this disease. Friends’ comments will echo in my ears “I don’t know how you do it…” If I were honest in those moments, I would delve into some long and rambley monologue about resilience undergirded by the pragmatic power of compartmentalization. So talking about Alzheimer’s online means de-compartmentalizing and getting knee-deep into the muck of feelings I often try to avoid, and that’s not always fun.

But the other reason why it’s a struggle is because it means talking about a hard thing in a way that is honest but not trite. The challenge is augmented because I want to talk about painful things that are happening to my Mom in a way that is open and honest, but is respectful of who she is. Much of what is happening to Mom is causing her to regress, but I don’t want to treat her like a child. I still want to respect the strong, resilient, brilliant woman that she is – but also to be real about what this disease is doing to her mind and abilities.

I write all of this just to highlight this challenge of the disease – simply finding language to talk about what is happening. It is especially hard this year because Mom has lost a lot of her ability to speak, and my knee-jerk reaction is to keep that off the internet (not just to protect her, but also to protect myself from having to really see what is happening).

But the Alzheimer’s walk is a time for us to speak out into the noise of our daily life about this 

constant struggle, to raise awareness and hopefully ensure that my boys won’t have to worry about whether or not they will have this disease because it is now lying dormant in our family line. And so, in spite of that tiny dread, we are diving in. Thank you for listening as we share weekly about different facets of this disease with the hopes that you will join us to Walk to End Alzheimer’s on Saturday, August27th.

{our 'how we feel when people respond to our conversations about Alz and come out and walk with us' faces}

{hold: my momma}

I was trying to figure out my intro entry for the Alzheimer’s walk and ended up going another direction – but here’s some scratch thoughts that were meaningful that I am tucking away on 

this blog…

…

Not to mention I always try to balance sharing the challenging with the uplifting in our journey, and that can be a hard balance to maintain. I could tell the hard stories – like the potentially infuriating moments of my weekdays at home, when my Mom may walk upstairs or make loud noises while my 18month old is napping (at no fault of her own – she forgot they were napping). Asher will wake up early from his nap, throwing off not only his whole day, but also my entire attitude and mood toward my mother. (Read: Rage, which is unfairly directed at her, but has nowhere else to go.)

Or sometimes Charlie and I will have a night out planned, and it can be derailed because Mom’s feelings get hurt when she feels like she isn’t included. (Again – at no fault of her own, she’s lost some of the ability to distinguish boundaries and the need for a couple to be alone. I can understand her fear of being alone, especially as her ability to hold onto the world around her is slipping away. But that doesn’t diminish my frustration over what seems like her ‘childish attitude’ in the moment.)

But then there are the ups – tonight I was feeling particularly frazzled and drained. I’d wrangled my toddler into bed on my own, in the midst of an (unusually) empty house, amid Morris’ cries and flailing due to a bad bout of gas. All I wanted to do was collapse and read, gather my thoughts, but he kept crying – shrieking. Mom came home from her outing and I trekked downstairs when I was on my last leg – asking her if she could just walk the baby and give me a bit of time to rest. And so she does, she steps in and works what I have dubbed her ‘YaYa magic.’ She walks the baby, blows into his ear, and makes lots of noises Charlie and I find a bit goofy. And while I’m furiously typing away nearby in the bed I also notice she’s whispering, over and over to my boy ‘I love you. I love you.’

Tears flow freely; I am richly blessed. I am so grateful for her hands,

her patience,

her love.

I am constantly mourning experiences we don’t get to have together as Mother-daughter and mother-new mother, but I will hold the memory of her whispering, singing over my boys in these early days. I will remember how her hands gave me rest, and how deeply she loves her grandchildren – it’s embedded as deeply in her as something can be.

"For the LORD your God is living among you. He will take delight in you with gladness. With his love, he will calm all your fears. He will rejoice over you with joyful songs."  Zeph3.17