When Mom is No Longer on the Other End of the Phone

I almost called my mom today. But then I remembered that I can’t. She died 9 years ago. She died on the inside years before that, as Alzheimer’s Disease slowly robbed her of the person that she once was over a long 13-year journey.

I wanted to show her some of the sketches I just completed. She took up artwork in her 50s, and as it turned out, so did I. I knew I wanted to start painting and drawing at some point. As awkwardly bulky as it was, after she passed, I moved her easel from Kansas City to my house in the Chicago area, which now has a basement section turned art studio that would make my mother proud.

I had the privilege to go to Washington, DC in June to advocate with the Alzheimer’s Association Illinois Chapter. Our group included 50 other Illinois advocates. There were 1,200 advocates in all from across the US. Having us all in one large hotel ballroom was incredibly empowering, knowing that we were all there because we have a personal connection to Alzheimer’s and are aligned with the Alzheimer’s Association’s vision of a world without Alzheimer’s.

My Alzheimer’s story is a bit unique in that I also blame my father’s death, 5 ½ years before my mom’s, on Alzheimer’s. As my mom’s caregiver for about 8 years, the day-to-day toll caught up with him. Like other caregivers, he prioritized my mom’s needs over his. We lost him in 2010, representing the heavy impact Alzheimer’s has on families, family dynamics and making family decisions about your loved one’s care.

While in DC, a subgroup of Illinois advocates and I had the opportunity to meet directly with my congressman, Bill Foster, and I got to share my story with him. I appreciate how receptive and supportive he is in our meetings.

In my 11 years of advocating, I’ve seen the shift of Congress from being hesitant to invest in research towards a cure for Alzheimer’s, to now they know it’s needed. All of the prior years’ funding has enabled us to see the progress we have today. We now have FDA-approved drugs that will slow the progression of the disease, if started early enough in the disease cycle! We have come so far. But we are not there yet.

Alzheimer’s or another dementia can affect anyone. Thankfully, Congress knows this fight isn’t red or blue - it’s purple. Our bipartisan leaders have played an important role in accelerating the way our nation addresses this disease, but we can’t stop our progress now. That is why I am asking my Representative Bill Foster to support a $113.485 million increase in research funding at the National Institutes of Health (NIH) for FY 2026.

The time is now to not only invest in progress but also invest in hope.