Each month, we’re featuring an advocate who engages with policymakers to ensure priorities that improve the lives of people impacted by Alzheimer’s and all other dementia remain top-of-mind in Congress.

Married to a member of the United States Coast Guard, Michelle has faced the challenges experienced by many military families across the country, moving their family every few years to a new home. When Michelle’s dad was diagnosed with early onset Alzheimer’s in his late fifties, she worked with her mom, often across state borders, to navigate the complicated health care system and advocate for her dad throughout his disease progression, all while caring for her young children. 

“Every time I’d go visit mom and dad in the summer with the kids, I felt like we were seeing the same signs we saw in my grandma,” said Michelle. “But he was still working. He was young. He had zero health issues. It took us a very long time to get him diagnosed.”

Michelle would see her dad take her young son for a drive to get a slushy and not use a car seat. “He put him in the front seat of the car,” said Michelle. “He just had really poor judgment. That’s how his symptoms started.”

Still, there were good times and strong memories too, she reflects. “That was always mom and I’s motto — we’re gonna have a good time. We’re Hispanic. We’re from Louisiana. We know how to have a good time. So we’re going to have a good time until we can’t anymore.”

Like so many others impacted by dementia, receiving a diagnosis was a challenge. Michelle and her mom shared their concerns with each other and then with his doctor. 

“First they put him on antidepressants and said ‘he’s just depressed.’ Then [after he retired following some issues at work], they were like, ‘you’re just not used to having him home all the time,’” said Michelle. “And then finally it started affecting his speech, he couldn’t find the words…he used the same words a lot. He was good at holding an interesting conversation, but about the same things. He was a mortgage banker, so it was all about money, the stocks and the economy. When he was in the doctor’s office and he started one of those random conversations, finally the doctor looked at my mom with tears in his eyes, and said, ‘I’m so sorry.’ He gave her a neurology referral.”

Even after he received an early-onset Alzheimer’s diagnosis at the age of 59, Michelle and her mom had a difficult time finding the right care facility for her dad. After moving him several times, they finally found the right one. “From the director to the people who were vacuuming, they all treated everyone there with such dignity and respect,” said Michelle. It was through someone working at this facility that Michelle and her family first got involved with the Alzheimer’s Association. 

“They had a Walk [to End Alzheimer’s] team, and so we joined. It was on the beach of Galveston, and it was beautiful,” said Michelle. “Fifteen days from the day of that Walk, my father passed away.” 

The following summer, Michelle and her family moved again, this time to the Washington, D.C. area. But Michelle stayed in touch with the Alzheimer’s Association in the Houston Galveston region.

 

“We came here and instantly found out that we moved five minutes away from the [local Alzheimer’s Association] office. So once I got settled in the house, mom and I just drove over there and said, ‘Hey, we moved to the area and we love to volunteer.’”

 

From answering the phone at the Alzheimer’s Association National Capital Area Chapter office to participating in health fairs and community outreach, Michelle fully jumped into the fight to end Alzheimer’s and all other dementia. But when someone asked her to become an advocate, Michelle was hesitant. 

“I’m just a girl from Louisiana, I know zero about politics,” said Michelle. “It’s not my comfort zone. I said I don't want to have anything to do with it.”

She came around to it though in 2017, when she was asked by the Alzheimer’s Association to join a group attending the Rally for Medical Research at the U.S. Capitol. Michelle finally agreed to see what advocacy involves, and she enjoyed the experience so much that she decided to become an AIM advocate and attend the AIM Advocacy Forum annually. “I went [once] and I was hooked,” said Michelle. “So that was my first [Hill Day] event in 2017, and by that December, I was Rep. Connolly's (D-VA) Ambassador.”

 

“Rep. Connolly met with us in our first meeting and talked with us for over an hour,” said Michelle. “His staff is so nice… to this day I still meet with the same person.”

Over the years, Michelle has developed a close relationship with Rep. Connolly and his staff. She emails them with Alzheimer’s updates, and they promptly respond and sometimes even email her to share information about upcoming events. “I just never even knew that was possible. I’m proud that I’ve developed that relationship with them.” 

When it comes to policies advancing, Michelle has become very passionate about seeing legislation pass and become law. The BOLD Infrastructure for Alzheimer’s Reauthorization Act is currently a priority for Michelle. 

“[BOLD] is the one thing since I’ve been advocating that I’ve seen all the way through,” said Michelle. “We advocated for it. We actually got to see it pass. And now we’re at reauthorization. So it better get reauthorized… because it’s the one thing that I’ve gotten to see from the start.”

“Some advocates have been advocating for 20 something years, and I always think it’s mind blowing. I'll probably be one of them,” said Michelle. “But I’ve finally gotten to see all the steps of the process. And it just takes time, so you have to keep on chugging along every year.”

Addressing Alzheimer’s and other dementia as a public health issue is important to Michelle, who has seen how difficult it is for many to even talk about the disease. “What I learned from doing all the tables at health fairs is: nobody wants to stop at the Alzheimer’s table,” said Michelle. “I learned that real quick. so I have to make it pretty and put flowers and candy and food… People are scared to talk about it. So we’ve got to get out to somehow do a better job of making it less scary and talking about it… I think if people don’t feel like it’s just the end, but like there’s something that we can maybe do earlier on, then maybe people would be more willing to talk about it.”

Advocacy has also provided Michelle with new motivation to bring to the fight to end Alzheimer’s and other dementia — through her fellow advocates. “[It’s been inspiring] meeting all the other advocates and seeing people who are living with Alzheimer’s fighting. When mom and I were going through it, I couldn’t even think about going up on the Hill and advocating. We were just trying to get through the day advocating specifically for my dad,” said Michelle. “When I see all these other people doing this while they have disease, while they’re actually caregiving. This is the least I can do now… The least I can do is go out there and advocate for other families that are like us and couldn’t.”

 

“I see the difference we are making. I like the health fairs, and I feel like it’s important for us to be reaching people in the community. But being up at the federal level is like a whole different ball game. That’s the big picture,” said Michelle. “I’ve realized it's really important to get these big bills passed. People really think, ‘oh, it doesn’t make a difference,’ but it does. It makes a huge difference.”

Michelle’s efforts are being recognized. In September, Michelle was honored by the Women in Government Relations (WGR) with the Excellence in Advocacy by a Volunteer Leader Award. AIM is incredibly proud of advocates like Michelle for their dedication to advancing policies that will improve the lives of those impacted by Alzheimer’s and other dementia. 

 

 

Learn more about how you can make a difference by becoming an advocate like Michelle.