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}