Month: September 2021

Michele Rust was a generous donor and Memory Rock Chicago committee member who passed away from Alzheimer’s disease on August 2, 2021. Her niece, Robin Eggert Elm, spoke with the Alzheimer’s Association about Michele’s commitment to fighting the disease, and why the cause was so important to their family.

How has Alzheimer’s disease impacted your life?
Michele’s mother and my grandmother, Rose Gold, had dementia. She was born April 4, 1912, on the West Side of Chicago. She married my grandfather, Ralph “Mickey” Gold. In addition to being life partners, they were also business partners. Mickey’s Monograms was the largest monogramming and embroidery factory in Chicago at that time. They made emblems for schools across the country and embroidered the Harlem Globetrotters uniforms. Her daughters, Sheila (my mom) and Michele were “her girls.”  She was diagnosed with dementia in the mid-1990’s and passed away on December 29, 2001. Michele and my mom were her caregivers. When I chaired the Minnesota/Dakotas’ 1998 Alzheimer Gala, my grandmother was an honoree. 

Michele became involved with the Alzheimer’s Association Illinois Chapter in 2018 after seeing her mother’s journey with the disease. She was thrilled to get involved. Her passion was “making magic.” She went through significant personal challenges when she was in her 20’s and never forgot the people who believed in her and helped her. She committed her life to helping others; it fed her soul. 

She would often speak to me about her service on the Memory Rock Chicago planning committee. Since I had been on both the Wisconsin and Minnesota/Dakotas’ Board of Directors, we were able to swap stories about our roles. 

Michele first got involved with Memory Rock when two friends of hers, who were also involved in Memory Rock, took her out to dinner. They spoke highly of Michele and asked her to get involved. 

I first became aware of Michele’s memory loss in November 2017. It was a difficult year as my mother, Sheila, and father, Dave, died months apart. Michele had an outstanding primary care doctor who advocated for her and kept me apprised of her situation. Unfortunately, like many older adults, COVID-19 and quarantine isolation escalated her dementia. 

How has Alzheimer’s disease impacted your life?
I believe Michele would share how difficult it was for her to watch her mother, who had always been fiercely independent, gradually lose her cognition and be forced to move away from home and away from friends. 

Michele would also mention the hidden gifts of the experience, such as getting closer to her sister while they shared the caregiving responsibilities for their mother; seeing her mother positively engaged at her memory care facility; being able to have purposeful visits (such as doing ceramics together); and finding humor (such as when my grandmother had a crush on a young, male dining server). 

Michele was a fiercely independent woman who ran her own business, chaired major fundraising events, and created her own non-profit. She was in her early 70’s when she struggled with her memory. Having her independence for so long made her resistant to discussing memory loss with her doctors.

As her Trustee, she made me promise I would do all I could to honor her top two priorities:
1. Stay with her dog; and 2. Remain in her condo. She had an outstanding care manager who worked with me and tried so many things to keep her at home. At a certain point, unfortunately it just wasn’t feasible. 

She was eventually moved to a memory care facility where she thrived. She was out of her room all day and engaged with the staff and residents. The Executive Director knew Michele’s story and gave her a “job.” 

She had dignity, was recognized, valued, loved, stimulated, challenged, and safe. 

How has Alzheimer’s disease impacted your life?
As Michele cared for my grandmother, education was key. It was helpful for both Michele and my mom to accept my grandmother’s reality vs. arguing with her about things she said.  I also believe in the importance of caregiver education, having witnessed Michele in her memory care facility. 

Michele was grateful that she had financial resources, and recognized the significant number of people who didn’t and how this limited their care options. The same applies to having a family member who loved her; I have a background in geriatrics, and she knew I would fiercely advocate for her.

Why should others raise funds and awareness for Alzheimer’s disease?

• Education – That it’s not an “elderly” disease. It impacts all generations. 
• Caregiver support – It really is a 36-hour day. Even with my professional experience, I would often spend 3+ hours a day on Michele’s needs. 
• Engagement – Too many older adults are isolated and don’t feel they have a purpose. This takes a toll on their mental health. COVID-19 exponentially increased these stresses and challenges.

What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand?

After chairing Alzheimer’s fundraisers for years, I became involved with a non-profit for terminally ill children. Each cause requires a different approach to get people invested. People need to remember that an individual living with Alzheimer’s is someone’s mom, dad, aunt, uncle, or friend. The disease affects everyone.  Likewise, we need to recognize the selflessness of health and long-term care facility staff. We all need them, so we should value them and ensure they receive the training and resources they need to provide the best type of care possible. 

Michele Rust’s Trust is leading the charge against Alzheimer’s disease and all other dementia by sponsoring Memory Rock Chicago at the Title Sponsor level. Join them in honoring Michele’s legacy by making a donation at MemoryRock21.givesmart.com. 

Tim Kanold ran the Chicago Marathon on a dare from his best friend Jerry Cummins. Thirty years later, Tim returns to the Windy City to run the Bank of America Chicago Marathon in Jerry’s memory.

Jerry was diagnosed with Alzheimer’s disease in 2010. On a long walk with Tim in Mission Bay, CA, Jerry shared concerns about memory loss. Tim said, “Our usual lively interaction and banter with one another quickly dissipated once Jerry announced to me, in a matter-of-fact tone, ‘I am having trouble remembering things.’ We walked until dark that day.

“It was the beginning of a six-year Alzheimer’s journey with Jerry that began slowly as he gradually drifted from knowing who I was, and ended with emotionless moments together, that left me in desperate tears, hoping he could somehow feel and know my deep love for him.”

Their friendship spanned decades, with countless moments of laughter, friendship, and travel. “No matter where we would travel,” said Tim, “we would find a place to walk and talk and to have our deepest conversations. We shared that rare friendship of understood joy and pain, all of the best and the worst that comes from the challenge of living your best life on as many days as possible—every single season.”

Early in 2021, Tim decided to honor one of the most significant friendships of his life by running 26.2 miles. “It is a long run for me and my body at this stage of my life. The training is hard, and has had its ebbs and flows, but I love that this run can support research that just may help the future Jerry’s of this world.”

Tim gathered friends and family to join him. “Our youngest daughter Anna leads our ‘Run 4 Jerry’ team, along with two wonderful Lodi friends, Dave Phillips and Corinne Howe. And I am so grateful for our merry band of runners.” 

ALZ Stars athletes commit to raising funds for Alzheimer’s care, support, and research. They receive entry to the Bank of America Chicago Marathon, coaching, branded gear, and more. Tim asked friends, neighbors, and professional connections to support his fundraising effort. “It has been both humbling and rewarding. Most of them have donated because of their love for my colleague…Jerry Cummins. Some of them donated out of respect for me, and some out of respect for the ALZ disease and their own experience of suffering with a family member.”

Tim pushed through health setbacks in his summer training schedule and is counting down the days until Chicago. “As to my training, it honestly has had so many challenges unlike anything I have experienced before…But this 2021 year has been filled with challenges as I stretch my body out for the full marathon.”

Tim hits the startline in Chicago on Sunday, October 10, in honor of his closest friend. “I know too, that my story with Jerry is not unique,” says Tim. Tim, Anna, Dave, and Corinne will cover over a hundred miles collectively, with every stride moving us closer towards a world without Alzheimer’s and all other dementia.

Donate to team “Run 4 Jerry” or learn more about ALZ Stars. Registration for the 2022 Bank of America Chicago Marathon is expected to open mid-October 2021. Email tjcollings @ alz.org to reserve your spot on the 2022 ALZ Stars team. 

“I have lost my uncle, my grandfather and my mother-in-law to the disease,” says Katie Thomson. “At some point, Alzheimers will touch everyone in some way or another. We all have a stake in eradicating it.”

Katie participated in the Fox Valley Walk to End Alzheimer’s on Saturday, September 18 to move us closer towards a future without Alzheimer’s disease. She has participated in the event for 5 years. Katie currently sits on the Team Retention committee for the Fox Valley Walk to bring more volunteers into the fight to end the disease. 

The Alzheimer’s Association is moving forward with plans to host all Walk events in person with the health and safety of participants, volunteers and staff remaining the top priorities. We are implementing safety protocols at all events including physical distancing, contactless registration and hand sanitizing stations. A Walk From Home option is also available, including  a virtual reality experience, for those who prefer to walk in their own neighborhoods. 

Katie wants to remind anyone who hasn’t experienced Alzheimer’s or dementia firsthand that “the toll it takes on the patient, caregivers, and  loved ones is devastating in ways hard to conceptualize.”

Yet for Katie, Walk represents a future where no family has to face the disease. 

“It’s the journey toward the end of this disease…We need all the help we can get!”

Join Katie for Walk to End Alzheimer’s by registering at alz.org/walk, or download the Walk Mobile App to start planning your Walk From Home experience.

Running 26.2 miles to end Alzheimer’s is one thing. Now multiply that by four.

Siblings Chase, Cody, Hallie, and Jacob are running the Bank of America Chicago Marathon next month on team ALZ Stars to raise awareness and funds for a cure. The four Wombacher siblings are totalling 104.8 miles—not including the many miles spent training and completing previous marathons.

Every stride is meaningful for the family. They are running in honor of their Grandma Toot, who is currently living with Alzheimer’s disease, and their Great Aunt Donna, who passed from the disease in 2018.

The Wombacher siblings shared, “We are going the distance with the Alzheimer’s Association ALZ Stars®, a program to advance the care, support and research efforts of the Association. We are running not just for our Grandma Toot and Aunt Donna, but for all those who have been affected by this terrible disease both directly and indirectly.” 

Their Grandma Toot has been living with Alzheimer’s disease for some time. Cody shared about his grandma, “When Grandma Toot was diagnosed with Alzheimers, it hit hard. She was always so strong and independent. Growing up across the street, she was always the first to see me when I arrived home from Chicago and the last to say goodbye before heading back.

“Grandma Toot is a fighter and a competitor,” he shared. She taught the four siblings and their cousins how to be good competitors, starting at the golf course she owned. 

”We are lucky enough to still have Grandma Toot with us today but sadly Alzheimers has taken away so much of what we know and love about her…Though she is not the same person she used to be, getting to see those small glimmers of her personality, feistiness and humor come out is truly the greatest feeling in the world!”

In addition to their grandma’s journey with Alzheimer’s, the Wombachers lost their Great Aunt Donna to the disease in 2018. She was like another grandma to the siblings. Having no children of their own, they spoiled the four kids generously. 

The Wombacher team, nicknamed Wombie Runners, includes novice and experienced marathoners alike. This is Hallie and Jacobs’ first Marathon, Chase’s third, and Cody’s twelfth marathon! Chase and Cody live in Chicago; Jacob and Hallie live in Iowa City, IA. When they’re not training, they spend time with their families. Some of their favorite post-run treats include chocolate milk, cold beer and Tootie Burgers—a family staple of legendary proportions. 

“Running has always been a part of our family,” shared Cody. “And what better way to honor and help bring awareness to this disease than to run a marathon together.”

Learn more about team ALZ Stars and donate to Wombie Runners here.

Christie Boody is participating in the Chicago Walk to End Alzheimer’s on Saturday, October 9 in honor of her father, who she lost to Alzheimer’s disease. This will be her sixth time walking in his honor. 

Christie shares, “Every year we do it it’s so inspiring to see everyone come together to end this terrible disease. I always find hope that we will find a cure and we are getting closer each Walk!”

Held in 24 locations around Illinois, the Alzheimer’s Association Walk to End Alzheimer’s is the world’s largest fundraiser for Alzheimer’s care, support and research. This inspiring event calls on participants of all ages and abilities to join the fight against the disease. 

Illinois has 230,000 residents living with Alzheimer’s disease and 381,000 caregivers. “This is a terrible disease and you don’t know if you will be put in a position of someone having it close to you,” says Christie. 

Christie wants those that haven’t experienced the disease first-hand to know that “it’s one of the hardest things to watch a loved one forget who you are and all the memories you made with them. To have to remind them who you are is an unexplainable feeling that just breaks your heart.” 

Christie is joining other Walk participants across the state this fall to raise critical funds and awareness for families and individuals. Every dollar they raise funds 24/7 care and support services and advances research toward methods of prevention, treatment and ultimately a cure.

Register for your local in-person Walk to End Alzheimer’s at alzheimers-illinois.org/walk. We will continue to closely monitor CDC, state and local guidelines to ensure Walk events adhere to recommendations and are safe for attendees. If you prefer to Walk From Home, you can still engage in many Walk-day experiences through our mobile app.

“It means a lot to be able to give back,” says Trista Waters. This is her first year participating in the Peoria Metro Walk to End Alzheimer’s on Saturday, October 2. Trista’s mother was diagnosed with Lewy Body Dementia two and a half years ago. 

“They told her at that time she had been living with dementia for four years already. My mother is 68 and lives in Alaska, and I may never be able to have a conversation with her again over the phone. I know one thing I can do is try and help fight this disease…I feel in life we can’t control everything that happens but we can control how we deal with it.”

Trista is determined to raise funds and awareness for Alzheimer’s disease. “We have to fight this,” she says. “More and more people are losing their lives to this disease and we need all the funding we can get to help families get the resources they need.

“It’s heartbreaking watching your loved ones deteriorate. Dementia takes everything from you, they don’t know who and where they are and they forget their loved ones. You pretty much are just constantly mourning the loss of your loved one that is still here.”

Trista has felt helpless living so far away from her mother. Yet participating in the Walk to End Alzheimer’s gives her purpose. 

“This is the only thing I know I can do. I just know with me raising as much money as I can, I will help end Alzheimer’s and other dementia…we need a cure!”

Walk with Trista towards a future without this disease at one of our in-person Walk to End Alzheimer’s events, or Walk From Home with the new and improved Walk Mobile App.

For Christine Read, the Walk to End Alzheimer’s gives “hope that one day no one else I love and care about will have to struggle with this awful disease.” This is Christine’s sixth year participating in the Lake County Walk to End Alzheimer’s. Christine walks on Saturday, October 2 in honor of her grandmother, who lived with Alzheimer’s disease.

“I lost my favorite person on this earth to it. Mourning the loss of someone while they are still living and breathing in front of you…It’s the most heartbreaking way to see someone live day in and day out.”

Christine reminds everyone that there is no cure for the disease and no way to prevent the inevitable after diagnosis. “The most important people in your life could one day look at you like you are a complete stranger and not want to be around you, trust you, etc. It can also be frustrating at times if you are a caretaker. No amount of love, care, or compassion will make them remember anything you want them to.”

Christine offers two tips for connecting with your loved one as they face the disease. If your loved one has a first language different from your own, Chrstine suggests learning it. “Eventually, they resort to that language and then it will become extremely difficult to communicate with them.” Secondly, Christine stresses the value of music to lift your loved one’s mood. “Music that they love will always trigger a happy place,” she shared. “They will even remember the lyrics. It’s heartwarming and gut wrenching at the same time. You’ll want to know why they can remember the words to a song, but not remember who you are to them.”

Having experienced the difficulty of losing her grandmother to Alzheimer’s disease, Christine encourages everyone to join her in pursuit of a cure. She says, “even $1 every month or year will go a long way.”

Join Christine at Walk to End Alzheimer’s this fall. Register at alzheimers-illinois.org/walk to raise valuable funds and awareness for Alzheimer’s care, support, and research.