A Champion for Women Facing Alzheimer’s: Michelle’s Story

What started as a social call blossomed into a passion for Michelle Carlson. Her friend, Mary Wasik, invited her to an educational event with the Alzheimer’s Association at her law firm. There, Michelle met other women impacted by Alzheimer’s disease and dementia. She found a meaningful community, helpful resources and hope for a future without the disease. She is now an Illinois Chapter Board Member, Chair of Illinois Women Conquer ALZ (IWCA) and more committed than ever to the fight against Alzheimer’s. 

Michelle’s mother, Miriam Hall

Michelle’s mother has been living with dementia for ten years. “Before that, she was extremely bright,” Michelle shares. “She had a chemistry/math degree and was a chemist prior to having four children…She has always been such an amazing and fun mom.”  

Today, Michelle’s brother and sister-in-law live with her mother and handle the day-to-day caregiving in Texas while Michelle stays connected through phone calls and long visits. “I know it has been a long road for my brother, sister-in-law and their family,” says Michelle. “They have been amazing…I am convinced that [their caregiving] is why she is still alive.”

Michelle’s mother has always prioritized family. “I wish I could have had more time with her as she was, but I’m glad that I have time with her today,” shares Michelle. “I take care of her 2-3 weeks a year and really do appreciate that time…In the beginning of her disease, she would forget things…She still repeats herself a lot and we mostly assure her that she is okay, or we go along with her unique thoughts.

“We need to treat all those diagnosed with respect; their condition is not their fault. There are times when my mom says things that are quite funny and often catch us off guard. It’s important to share the laughter together too!

Michelle is assisted and comforted by what she has learned through the Alzheimer’s Association. The website alz.org has a wealth of resources and education, and the 24/7 Helpline is available anytime, free of charge at 800.272.3900. “There are many things I have learned over time from my involvement in the Association, such as education on the disease, the science, the research trends,” says Michelle. “We have had speakers on all the issues from medical, legal, types of care, and the importance of exercise and nutrition. I have met doctors that treat the disease and listened to how they approach patients.

“This disease has a major impact on women, and especially Black and Hispanic women. Almost two-thirds of Americans living with Alzheimer’s are women and they are also more frequently the caregivers. If you have a job, it takes a bigger toll on the family’s source of income. It is stressful to care for a loved one with the disease. For those who don’t have a loved one living with the disease, it is very common to know someone who does.  We hope that one day there will be better treatments and a way to delay the onset of the worst aspects of the disease. Ultimately, we want to find a cure.”  

Michelle (left) with guest at Reason to Hope Oak Brook 2019.

After her initial encounter with IWCA, Michelle continued to deepen her involvement with the Alzheimer’s Association. She attended IWCA’s signature Power of Purple garden party event, which led to her joining the group’s Steering Committee. She has hosted a table at Reason to Hope, participated in the Walk to End Alzheimer’s and joined the Illinois Chapter Board of Directors. “I would like to try to make a difference in as many ways as I can,” shares Michelle. 

The greatest part of her work, though, is connecting with people who know what she’s going through. “I love the learning, the stories, the sharing and the amazing group of women and staff that I have met…Learning that you are not alone in dealing with the disease is cathartic.

“We need to slow the pace of the disease and ultimately find a cure. When you get involved, it gives you a chance to make a difference. Working together gives us an opportunity to make a bigger difference.

“I can’t be with my mom every day. This is my way of trying to have a positive impact. I hope to continue to build awareness, refer those who need assistance to the Alzheimer’s Association, listen and share more about how the association and our members can help others dealing with the disease.”  

Join Michelle and a passionate community of women advocating, educating and fundraising on behalf of Illinois families facing Alzheimer’s. Sign up for IWCA, and mark your calendars for their signature event Power of Purple on Sunday, June 12.

State Representative fights dementia stigma in Latino community

“Latino families do not call it what it is,” says State Representative Barbara Hernandez of the 83rd District. She says that many minority communities accept Alzheimer’s disease and dementia as a normal part of aging. “I would get mad,” shares Representative Hernandez. “I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s.” She has watched her grandmother in Mexico struggle with the disease and witnessed its impact on her family. The experience inspired Rep. Hernandez to advocate for a more dementia capable Illinois.

Rep. Hernandez is the daughter of first generation immigrants from Mexico and a lifelong resident of Aurora, Illinois. Her parents were undocumented for 21 years, which prevented them from being able to travel home. Rep. Hernandez connected with her extended family through letters, phone calls, pictures and social media during that time. She was able to meet her grandmother in-person in 2014 when her parents became residents. The signs of her grandmother’s dementia were already visible. She had trouble finding the right words and forming sentences.  

“Whenever we would talk I would say, ‘Hey, I think my grandmother has early signs of dementia, maybe she should go to the doctor.’ I was always told, ‘Oh no, she’s just forgetting a few things; she’s old.’” Her extended family attributed her grandmother’s forgetfulness to her age. Rep. Hernandez didn’t consider it her place to argue.

The experience weighed heavily on Rep. Hernandez after returning to Illinois. While she wasn’t face-to-face with her grandmother’s condition, it still had a tremendous impact on her. “I get to stay away from that and go back home to Aurora and leave everything behind,” she shared. “But it’s something I always have in my mind.”

Rep. Hernandez and her father returned to Mexico in November 2021. They were anxious to see her grandmother again: she had struggled with isolation and depression as a result of the COVID-19 pandemic. “When I went to my maternal grandma’s house, that was the hardest thing I’ve ever dealt with,” Rep. Hernandez said with emotion. “She thought I was her daughter.” 

“It was very upsetting to see, because of course back in 2014 I remember my grandma who could talk to me and knew who I was. And now, she thought I was a baby or her daughter.” Rep. Hernandez could recall the laughter and trips they shared, but her grandmother could no longer remember her. “You’re erased from their life. You’re still there, you can still hold their hand. However, in their mind you never existed,” she says. “You’re left alone thinking, how can this happen?”

Rep. Hernandez was appointed as the State Representative for the 83rd district in 2019, but her service to immigrant families started in college. She created a virtual resource board for her community where she gathered job opportunities–a program that is still in use today. Rep. Hernandez meets many constituents who have been impacted by Alzheimer’s and dementia through her work as a public servant. From what she sees, the disease is becoming normalized; families simply accept the symptoms as a part of normal aging. 

“I would say, ‘Call it what it is. It’s dementia. It’s Alzheimer’s…Why are we just normalizing it? How about we figure out how to fund science to prevent this from happening. How about we try to educate our doctors, our caretakers, our family members on this issue?” 

“That’s why I focus on legislation now,” Rep. Hernandez says. She is “very proud” to have supported legislation such as Senate Bill 677, which was signed into law in 2021 as the first bill in the nation to ensure ongoing dementia training for healthcare providers. To date, this is the strongest dementia-specific education mandate enacted for healthcare providers in the country.

“When I saw that bill, it was a no-brainer for me,” shares Rep. Hernandez. At that time, her grandmother’s condition was worsening. “That bill landed in my life at the perfect moment, where I was like, ‘Okay, I can’t do anything back in Mexico, but I can support this bill. And I can get educated more on this subject. And that’s what I’ve been trying to do.’

Rep. Hernandez is equally excited about the work she is doing in 2022 with the Alzheimer’s Association. “We’re carrying a bill this year that I’m hoping that we can get through. Because it’s very important that everybody gets trained, everybody is aware of the signs of dementia.” She is referring to the Community Care Program staff training bill, introduced earlier this month.

Many of our most vulnerable residents with Alzheimer’s or another dementia receive home and community-based services through the Community Care Program (CCP) at the Department on Aging. Senate Bill 3707 / House Bill 4620 will ensure that education on Alzheimer’s and dementia, safety risks, and effective communication are incorporated into the annual training for these providers. This minimum standard of education will allow consistent and safe delivery of important home and community-based services to people living with Alzheimer’s and dementia.

“Hopefully we can do a lot more in Illinois, and hopefully the country will catch up as well,” says Rep. Hernandez. 

Join Rep. Hernandez in advocating for a more dementia capable Illinois by registering for our Illinois Week of Action (February 22-24). Gather virtually with advocates from across the state by taking quick, easy actions from home. With a click of a button, you can help better the lives of Illinoisans affected by dementia. Learn more & register at endalzillinois.org.

Athlete runs final marathon to honor his mother

Many people dream of running a marathon. Steve Barbus had loftier goals. He began long-distance running at age forty and has covered over a thousand miles between racing and training. Steve ran his 30th marathon in October 2021 with team ALZ Stars in honor of his mother, mother-in-law, and two aunts. He resolved to make every step count in the fight against Alzheimer’s disease.

Steve discovered a love of running in high school. He ran his first marathon in Chicago in 1991. “The crowd carries you in Chicago,” says Steve. He recalls the excitement of that first race running along Lake Shore Drive and Lake Michigan. Since that day, Steve has run a marathon almost every year. The Cadillac, Michigan resident returned to the Windy City thirty years later for one final race.

Steve at the 2021 Bank of America Chicago Marathon

“I promised myself—as decades went by—I’ll see if I can do them in my 60s, and then 70s,” Steve says of running marathons. He decided to “put some purpose” behind his passion, so he found the marathon’s Charity Program and supported the causes close to his heart. He first ran to raise money for leukemia research, from which his father passed away. Later, he joined the Alzheimer’s Association ALZ Stars. 

When his mother developed Alzheimer’s, it was challenging for Steve and his family to see her dementia symptoms. Steve would visit his mother on weekends and observe changes in her memory and behavior. “She was always such a reasonable person,” shares Steve. He was baffled by the confusion she started to show. Steve tried correcting her until one day his sister broke the news to him: “This is a different person now,” she told him. Their mother was no longer the steadfast figure they remembered growing up. That was the difficult moment Steve had to face the reality of his mother’s condition. 

Eventually, it was too dangerous for Steve’s mother to live on her own. The siblings called a “family sit-down” to discuss moving her somewhere she would be safer and more comfortable. Steve had watched other families struggle with caring for a loved one living with Alzheimer’s. He was thankful for how his own family unified and responded. They eventually moved their mother closer and into a care facility, where she passed away from complications due to the disease.

Steve joined the Alzheimer’s Association’s ALZ Stars to prevent other families from facing the same difficulties. Steve and hundreds of other athletes raised funds and awareness for dementia care, support and research. Advancing research is key for Steve and his family. His wife, Sue, is a physician; they both understand the need for prevention, diagnosis and a cure. 

Steve and his wife, Sue

Running for a charity gives Steve an “incentive to get out there” and motivates him as he trains for every race. Training for a marathon can feel like a “pretty selfish act” according to Steve. He is incredibly thankful to his family for supporting him through his decades of running. He mentions how runners often think to themselves, “Why did I sign up for this?” when they’re reaching the hardest point of the race. Steve shared, “That’s another thing about running for charity: you know why you’re out there.” 

Steve remains involved with ALZ Stars and the running community as a member of the Event Experience Planning Committee. “I’m weaning myself off in a way, because it becomes a lifestyle,” says Steve. He loved the careful attention team ALZ Stars showed their athletes last year, and he hopes to make this year even better. Their homebase at Congress Hote—mere steps away from the start and finish line—had “everything we could possibly want before and after the race,” says Steve. Steve even spoke with first-time marathoners and shared advice he gained from his decades of experience. For Steve, ALZ Stars felt like “a real team.” 

This year, Steve will shape the race weekend experience for future athletes and encourage them as they join the fight against Alzheimer’s and dementia. He’ll guarantee they have an unforgettable race weekend, and who knows? Perhaps Steve will dust off his shoes and tackle marathon number 31.  

To learn more about the 2022 Bank of America Chicago Marathon ALZ Stars team or Planning Committee, contact Tracy Collings at tjcollings@alz.org or 847.915.6025. 

For families struggling to communicate about their loved one’s signs of dementia, attend the virtual Dementia Conversations: Driving, Doctor Visits, Legal & Financial Planning on Wednesday, February 16, or Effective Communication Strategies and Author Valene Campbell online on Wednesday, February 23. 

A Cure for His Past, Present and Future

“I’m no scientist or doctor, but I can take my passion in music and use it to hopefully make a positive impact,” shares Chicago musician Bryan Adamick. With his band the Struggs, Bryan is fighting Alzheimer’s disease by raising awareness and funds on the road.

Alzheimer’s has always been a factor in Bryan’s life. “My maternal grandfather suffered from Alzheimers in the late 80’s and early 90’s when I was in grade school,” says Bryan. “We lost my wife’s paternal grandmother to Alzheimer’s in 2013.” About 10 years ago, Bryan’s mother was diagnosed with early onset Alzheimer’s disease. She is now in an assisted living facility as she faces the advanced stages of the disease.

“Alzheimer’s disease takes smart, talented, proud people and turns them into a shell of themselves,” confides Bryan. “While all illness is difficult, Alzheimer’s really puts another level of mental and emotional strain on loved ones, because it feels as though the person you knew and loved for so many years is already lost, and yet, more than ever, they need a great deal of love, care, and extra attention.

Bryan and his family have found help through the Alzheimer’s Association. Both Bryan and his father regularly attend an Association-led support group. Support groups educate and inform participants about dementia and help attendees develop methods and skills to solve problems.

“When my grandfather was suffering from Alzheimer’s…my parents told me that by the time they were older, there would probably be a cure for Alzheimers,” shares Bryan. “Fast forward 30 years and there still is no cure.”

For Bryan, Alzheimer’s disease factors in his past, his present and possibly his future. 

“I’m now married with my own children (7 and 5 years old)…I recognize that there is still no fix in place, and with both my wife and my family prone to this disease, it dawned on me a few years ago that it’s about time I start taking action and doing my part.

Bryan joined the fight to end Alzheimer’s through his musical talents. He is a founding member of Chicago-based band the Struggs. Bryan is a prolific songwriter for the group. He also provides vocals, bass and acoustic guitar at live shows and on their records. 

The Struggs took their music around the region last year through a Summer Tour of Midwest Garages. Many venues were closed due to the pandemic, so they played their blend of rock and alternative country in open garages. Bryan shared his connection to Alzheimer’s disease at every stop and collected donations. With more than 6 million Americans living with Alzheimer’s disease, the band met many individuals who had similar stories. Many fans were inspired to give.

In October, the Struggs lent their energetic sound to the Chicago Walk to End Alzheimer’s. Their music was an up-beat backdrop to the day’s activities. Bryan even got his whole family involved. 

“My favorite part of the Walk this year was seeing my kids starting to understand a little more of what Grandma is going through,” Bryan says. “They learned about the Promise Flowers and what the colors represented and held them up in honor of their Grandma and Great Grandma.”

Are you interested in using a talent or existing hobby to fight the darkness of Alzheimer’s disease? Start a fundraiser with The Longest Day

The Struggs’ newest record Common Sense & Accidents comes out Friday, January 7. It will be available digitally on Spotify, Apple Music, Amazon and most major platforms.

From www.thestruggsmusic.com: Based in Chicago, the Struggs formed from numerous different bands and musical influences to create their own brand of rock/pop/alt country weaving catchy choruses and harmonies with soaring guitar riffs and solos. Established in 2015, they have played a variety of clubs and festivals, most recently raising money for the Alzheimer’s Association on a Summer Tour of Midwest Garages while clubs were closed. In 2022, the band will release its 3rd LP entitled Common Sense & Accidents.