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What I Wish I'd Known....

By Jodi Koehn-Pike, Caregiver Action Network

My mom was diagnosed with Alzheimer’s in 2010 and died in 2012. She was only 69. My mom was my first up-close experience with someone with the disease. When CAN partnered with Embodied Labs, I was both intrigued and nervous about the Alzheimer’s Module. I was curious to see what it had been like for my mom to live with Alzheimer’s—but a bit scared as well.

So, I binge-watched all the videos in the Beatriz Lab. I had some of my thoughts about Alzheimer’s confirmed and learned that a big part of what I had thought was completely wrong. Let’s start with what I had right. In the video on different physical signs around the house that your loved one may have a problem, they pointed out the pile of unopened mail and clutter as a sign. When I was growing up, our house wasn’t spotless, but it wasn’t exceptionally cluttered. A few years before her diagnosis, my sister and I noticed that the house was more chaotic. There were several empty shampoo bottles in the shower. Groceries sat on the kitchen table instead of being put in the pantry. Mom would fold the laundry but leave it on the bed. There was just a lot of stuff everywhere. I initially thought she now lived by herself and got a bit lax. After the diagnosis, my view changed. I realized she probably left things out so she wouldn’t forget where she put them. As for the empty boxes and containers, I think she could no longer decide what was garbage and what she needed to keep—so she kept nearly everything.

Another of the videos showed Beatriz and her family in the kitchen at Easter. Her family commented that Beatriz was focused on cutting potatoes and complained that dinner wasn’t ready yet, so they’d have to wait to eat. They were asking each other, “What’s wrong with mom?”—with Beatriz in the room so she could hear them—and commented that “mom always made the (whatever).” That made me think of one Christmas. Every year, our tradition was to have lasagna for dinner on Christmas Eve. A few months after her diagnosis, my mom was struggling with it. She had probably made lasagna 100 times but now couldn’t remember how. So, we made dinner together that Christmas, which became our new Christmas tradition.

In the last video, Beatriz is in an advanced stage of the disease. It’s Christmas time, and the whole family is in the living room. They’re showing her photographs and trying to get her to remember certain events. Beatriz is unresponsive until her grandson puts on music that she likes and starts dancing. That makes her come alive. This was true for my mom. Whenever she was agitated or in obvious distress, playing music that she liked was sometimes the only thing that would help her to calm down.

There was one big thing that I had wrong. Before watching these videos, I thought that when someone had Alzheimer’s, it was harder on their family and friends. Grandpa no longer knows who his grandkids are, or an aunt thinks her son is her boyfriend from high school. Someone might ask the same questions over and over. After watching the video, I learned that I was wrong. A person with Alzheimer’s knows what’s going on and realizes something is wrong. In the video, Beatriz couldn’t communicate with her family—what she said came out garbled, and what she heard them say was also mixed up. You could listen to her inner monologue about being confused and frustrated. She heard family members talking about her—as if she wasn’t there. She thought she must have done something wrong—but didn’t know what—and her family was upset with her. 

I certainly don’t want another loved one of mine to get Alzheimer’s or another dementia. But after watching these amazing videos, I have a new perspective and feel that I would be a better and more supportive caregiver for them.

Caregiver Action Network, through its partnership with Embodied Labs—and thanks to an award from CalGrows Innovation Fund—is recruiting family caregivers who have a loved one with Alzheimer’s to participate in this free training. If you have a loved one with Alzheimer’s, and would like to experience the world through their eyes, go to: https://app.embodiedlabs.com/login/can/ for a self-guided training.