Grief into Grit: Journey of an Alzheimer’s Advocate

By Karen Marez

This year’s Clacey McNary Volunteer of the Year award was presented to Karen Marez. The award  is named in honor of one of our most dedicated and dependable volunteers. Clacey McNary and his wife, Polly, started volunteering at our Chapter when Polly was first diagnosed with Alzheimer’s disease in 1996. Clacey continued to donate his time and talent to our mission until his own passing several years ago, just three weeks short of his 98th birthday.

Karen has been volunteering with our Chapter for many years in honor of her mother Lois, who had Alzheimer’s disease. She is truly a “full mission” volunteer – consistently donating her time and talent across many facets of our organization. Karen has served as a member of the Pierce County Walk to End Alzheimer’s Planning Committee, as a volunteer advocate and Alzheimer’s Congressional Team member for the 8th District, and has helped raise critical community awareness as a spokesperson, sharing her story and reaching thousands of people across our service area to let them know they are not alone. 

There are moments in life that can make you feel small and insignificant — like nothing you could do would change anything. One of those moments for me came the week my mom was moved into hospice care due to complications from a stroke while battling Alzheimer’s disease. Prior to this, we’d been losing her piece by piece, bit by bit, holding onto the love that still existed in a somewhat altered form, learning how to carry the load of anticipatory grief that comes with this long journey. Then when she passed a more complicated and larger wave of grief hit, one that came from feeling both relief that she was no longer suffering but also profound sadness from the very real absence of her presence in our lives. At that time six years ago, I couldn’t foresee that one day I’d find the resolve to turn this experience into something that countered the idea of feeling small and insignificant in this battle against Alzheimer’s disease. 

I must state upfront that grief is a difficult journey and a very individual one at that. Our society struggles with how to approach grievers, with its expectations of them, and sometimes seems to limit how long it will tolerate their sadness. I hope that will change in the future. My grief, at the beginning, consumed me quite often, and, despite what some thought, I truly believe that was okay for me. The love I shared with my mom was huge so it made sense to me that the grief I felt matched that. But my grief also carried an extra element of fear, a fear I know many other daughters and sons of dementia feel. My mom was not the first of our family to have dementia and I worried—like many do—that someday I would be the one in her place, with my kids standing in my shoes. While that fearful thought added weight to my grief, it eventually spurred me to action. 

Karen speaking with Senator Maria Cantwell at the 2019 Alzheimer’s Advocacy Forum in Washington D.C.

Becoming an Alzheimer’s advocate wasn’t something I really planned to do, but after attending my first Walk to End Alzheimer’s event, I decided to check the box that stated I was interested in helping more the next year. That small action in 2015 opened me up to the many ways change can come through advocacy work. I learned that as an advocate I could engage in numerous activities to help bring change to those dealing with Alzheimer’s now. I learned how fulfilling it was to participate in the fight for research funding as we search for better treatment and a cure for this disease. I will admit it isn’t always easy. Sharing my mom’s story—which is always a part of my advocacy—easily tugs on my emotions and can be exhausting; but I’ve also learned that sharing the Alzheimer’s journey with others can bring empowerment. When you know you’ve helped others, it’s almost impossible to feel small and insignificant in the battle against this disease.

As I started to get more involved with the Alzheimer’s Association, opportunities came to share more of my own personal story. I had a few pieces published in the ALZWA blog in 2016 and 2017. I was also given the opportunity to speak at the Reason to Hope event in Tacoma in 2017 and participated in interviews in 2017 and 2020 on Tacoma CityLine as part of the Tacoma Walk to End Alzheimer’s planning committee. Then in 2019 came a major highlight in my advocacy: I was given the chance to speak for the Association in an interview with ROOT Sports during Alzheimer’s Night with the Mariners. I’d never done a live television interview before, and while I was quite nervous, I managed to stay focused, sharing Alzheimer’s facts and helpful information with a larger public audience.

Karen doing an interview with ROOT Sports during Alzhemer’s Association Night at the Seattle Mariners in 2019.

During this time I also began serving on the Alzheimer’s Congressional Team for Washington’s 8th Congressional District, writing letters to the editor and meeting with legislators. With over 5 million Americans living with Alzheimer’s, support from the federal level is crucial; I’m proud to think our WA08 Congressional Team’s efforts helped secure the passage of the Building Our Largest Dementia (BOLD) Infrastructure for Alzheimer’s Act (P.L. 115-406) at the close of 2018. Another advocacy highlight was speaking with Senator Maria Cantwell and Representative Kim Schrier during the national Advocacy Forum in D.C. in 2019. 

Meeting advocates from all over the country at this national forum, seeing them also turning their grief into grit, inspires me to continue my advocacy journey. Unfortunately, the 2020 Advocacy Forum I wanted to attend wasn’t in-person this year due to COVID-19, but I was able to attend our state Advocacy Day in Olympia back in February, and since then, I’ve continued working with the Pierce County Walk to End Alzheimer’s planning committee to bring a successful but modified version of Walk this year. The needs of the Alzheimer’s community have certainly grown even greater during this pandemic, so I’ll continue doing what I can to be the opposite of small and insignificant in this battle against Alzheimer’s. It is my greatest hope that as more of us share our stories, our goal of a world without Alzheimer’s disease will eventually come true.

You can support the promise of care and support for people with Alzheimer’s and other dementias by attending one of our public policy Town Halls this November. Learn more at

One thought on “Grief into Grit: Journey of an Alzheimer’s Advocate

  1. As an advocate, Karen is a sincere inspiration for those families experiencing the signs of Alzheimers inching its way into their own families. She has been selfless in her time, stories, public speaking, fund raising walks, and even stepping up to advocate in both Olympia and Washington DC. She shares her stories; in order, to help those who may be experiencing the same difficult journey she has witnessed within her own family. We owe Karen much gratitude for shining light on a disease that needs research for a possible cure! Thank you,Karen for your commitment for the cure!

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