Why I still care: An advocate’s story

Editor’s note: You can join Karen and hundreds of advocates across Washington State and Northern Idaho. Register today for Advocacy Day 2017.

By Karen Johnson Marez

karen-famWhen I volunteered for and walked at the South Sound Walk to End Alzheimer’s this year, I wore a special hat adorned with a photo of my mother. I wanted her to be with me in a way others could see. It was important others knew this was the woman whom I had helped care for after much of her life was spent caring for me. I needed people to know the reason why I still care even with her gone. I had worn so many hats over the last eight years as I supported both parents on my mother’s journey with Alzheimer’s and my dad’s successful cancer battle. On the eve of the 2016 walk, I figured why not wear an actual hat to clearly demonstrate why I am who I am today: an Alzheimer’s advocate, someone who wants to share her story and make a difference in the fight against this disease.

For most of my mother’s journey with Alzheimer’s I was a single mom and middle school English teacher; two rewarding yet demanding roles. Since I had learned I could effectively “switch hats” between the two and even balance both at once, I knew I possessed the ability to don the cap of care partner for my aging folks as well. Now with my mom gone, having stepped away from teaching and having my youngest in college, I wear the hat of an advocate more than any other hat. kjm_edit

Some people can handle tackling this role earlier in the journey. I do suppose I began my work as an advocate when I began sharing pictures and posts on social media in hopes of communicating how one can still find joy in this journey with Alzheimer’s. Now, I share much more—articles on dementia research, caregiving advice, support for caregivers, and I follow others on social media who do the same. I believe that many who paid attention to my earlier posts trust that I still share information worthy of their time. And that belief reminds me to continue doing my part rather than moving on from this disease.

Besides donning my advocacy hat as a Walk to End ALZ Alzheimer’s captain the last two years, I have also paid more attention to the legislative process that affects Alzheimer’s and related dementia. I plan to write more letters, posts, and tweets to those whose attention we need in this battle in the New Year. I believe I’m still learning exactly how my Alzheimer’s advocacy is going to unfold. I believe my own life journey continues to be altered by my mother’s journey. And I believe there are so many more people like me who do make a difference and even more who may just be realizing that they, too, can use their voice.

karen-and-momSomeone suggested a while back that I should just move on and live my life. I explained I am living my life. Once Alzheimer’s touches your world, you are forever changed. That is likely true of any incurable disease, but with Alzheimer’s you  lose your person in the end but you also lose them in pieces along the way. Though I learned to find joy in the journey, I wouldn’t wish it on anyone.  Just moving on feels too much like giving up and that thought unsettles me. 

By donning my Alzheimer’s Advocacy cap  I can be a knowledgeable voice  to end the surrounding stigma of this disease and garner support for legislative funding and research. I will gladly continue this journey with Alzheimer’s in that manner, honoring my mom’s memory along the way and hopefully helping fewer daughters become daughters of dementia.

Follow Karen’s blog here.

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