The Importance of Finding Community and Sharing Your Story

The day after my 62-year-old mom was diagnosed with Alzheimer’s disease, I called my best friend to tell her the news. My friend’s response was that her grandmother had Alzheimer’s before she died. My first thought was, “Oh okay, but that’s not the same as your mom having it. She is never going to understand what I’m going through.”

Would anyone understand what I was going through?

After that, I didn’t tell anyone about my mom’s Alzheimer's diagnosis for years. I didn’t know anyone my age, which was 25 at the time, who had dealt with a parent having Alzheimer’s disease. I felt like there was no point in telling anyone because they would never be able to understand what it was like. They just wouldn’t “get it.”

I also didn’t want to bring people down by telling them this sad story about my mom losing all her memories and cognitive functions. I didn’t want to burden anyone with my sad story. So, I just didn’t talk about it.

Sharing my story via social media

At some point, I decided to join a fundraiser for the Alzheimer’s Association and I realized that using social media would be the best way to meet my fundraising goal.

I shared my story for the first time in a post on my personal Facebook page, nearly three years after my mom was diagnosed. I was surprised by the amount of support I received and how much better it made me feel. This encouraged me to continue sharing my story on social media, as well as join online support groups and reach out to others I met online.

Sharing my story and connecting with others who were going through the same thing saved me. Prior to that, I had felt completely alone. I didn’t know anyone anywhere in the world who was going through what I was going through.

Well, no one except for my sister, but I think it’s important to note that no matter how close you are to your siblings, everyone handles this disease differently and it’s beneficial to have support outside of your immediate family. Through sharing my story, I connected with people all over the world who knew exactly what I was going through.

Sharing YOUR story

If none of us ever shared our stories, then we would all be sitting alone in our houses thinking we were the only ones going through it.

We would never know how many people out there would be shooting up their hands and shouting “me too” at the top of their lungs. We would never find a sense of community to help support and guide us through this journey.

The greatest resource I found during my mom’s ten-year battle with Alzheimer’s was other caregivers. Find them. Connect with them. Support them and allow them to support you. They will become your lifeline and more importantly, your friends. You may never know someone in your real life who “gets it,” but if you have an online community of people who have been there, that is a goldmine.

Finding your support group

So, where do you even start to look for these people and build your Alzheimer’s community?

I suggest support groups online and on social media, the comments section on your favorite Alzheimer’s blogs or social media pages, and platforms such as this one that allow you to share your story and connect with other caregivers.

There’s a whole world of people out there waiting to support you on this journey. You were never meant to do this alone and now you don’t have to.