Why I Walk…Mary’s Story

Mary Fus is a fixture of the Chicago Walk to End Alzheimer’s. She is a repeat Elite Grand Champion—a distinction that comes with raising over $2,500 for Alzheimer’s care, support, and research—and Chair of the Mission Committee. She is the proud captain of team Pou-Pou. As of Thursday, October 14, the team has raised over $35,000 in 2021 alone. 

Mary and her mother.

“As a caregiver for my mother with Alzheimer’s disease, it takes more patience than you can imagine; but it is also an honor to give back to her and care for her when she needs it the most,” says Mary. Every dollar raised through Walk to End Alzheimer’s funds research and support services for families around Illinois. Mary’s family is one such recipient.

“This will be my 9th year walking in honor of my mom,” she says. “What drives me to continue on this journey is experiencing first-hand as a caregiver, how this disease continues to take away my mom, leaving a shell of who she once was. Our roles are reversed now, I take care of her like she took care of me as a child. I still hold on to those memories and was blessed to have a great role model in her.” 

Team Pou-Pou in 2013.

After years of witnessing her mother’s decline, Mary felt compelled to step up and do something to fight against the disease. 

“Nine years ago in 2013, I hastily formed my team and it’s called Pou-Pou and that’s in honor of my mother…known as Pou-Pou Yung to her grandkids and many others.”

Mary with her mother and sisters at the 2021 Walk.

“Our team consists of family and friends who walk not only for her but for the many other relatives and friends that are currently suffering from Alzheimer’s disease and other forms of dementia, as well as in memory of all of our loved ones that have already lost the fight to this thief of a disease.”

Mary and her family attended the in-person Walk to End Alzheimer’s on Saturday, October 9 at Soldier Field in Chicago, Illinois. For Mary, participating is her “way of doing something to honor my mother…and to help put an end to this progressive disease, so that others don’t have to experience the loss of a loved one while they are still living.”

Mary and her mother.

The Alzheimer’s Association is incredibly lucky to have a champion like Mary in our midst, and all the other supporters who strengthen the fight to end Alzheimer’s. Beyond chairing the Mission Committee and being one of our top fundraisers, Mary has volunteered in the Alzheimer’s Association office, advocated policy makers in Springfield, been featured in the Reason to Hope program video and launched the “Light the City Purple” initiative, getting major downtown buildings to light up purple to #ENDALZ. Mary was also instrumental in bringing together a partnership between the Alzheimer’s Association and the Chinese American Service League.

A selection of Champions Club incentives.

Mary recently joined us on Facebook Live to share a few easy ways to reach the Champion Club. She continues to motivate her team Pou-Pou to raise funds for the Alzheimer’s Association. All Illinois Walk to End Alzheimer’s participants will be eligible for incentives for all donations raised through Wednesday, December 1. Find the full list of incredible incentives here

Team Pou-Pou at Soldier Field in 2019 (13 Champions shown here!)

Learn more about Mary’s team here, and check your fundraising status at alz.org.

Learning Vulnerability for the Sake of Your Loved One Living with Alzheimer’s

There are good days and bad days for Danielle Spaar. She is a caregiver to her parents, including her father who is living with Alzheimer’s disease. A former Marine, her father “was the one everyone could depend on,” said Danielle. “He was the calm parent to talk to about your problems.” 

Danielle and her father had a difficult day recently when they returned home from a family vacation. Their routine was out of sorts, and emotions were high on both sides. However, the challenging day grew into a useful exercise in vulnerability for Danielle. 

“As a very independent person myself, I can’t imagine how he is feeling.  Being so out of control of the things happening to him…I’m still glad I let him see ‘behind the curtain of strength,’  just for a moment,” shared Danielle.

Danielle grapples with being open about her struggles as a sandwich caregiver—caring for a parent and child at the same time—and describes how vulnerable she feels as both a mother and a daughter. Danielle describes the first time that her daughter saw her cry, and how this experience caused her to reflect on what it means to be a parent and to show your emotions.

Danielle reflects on the man her father was before his illness—a “ripped” young man who enjoyed exercise and entered the Marines in the middle of culinary school. Now, she notes that her father finds comfort in the simple things. He enjoys listening to music from the 60s and watching old movies with his family. Danielle and her father enjoy a routine of morning walks with Danielle’s labradoodle, Tony, as they engage in “familiar” conversations. 

Danielle recalls times when her emotions got the best of her and she lashed out towards her father in frustration. She has an important reminder for other caregivers: “Don’t bottle all [of] that hurt inside.” 

Through the Alzheimer’s Association, Danielle benefited from the Care Consultation program and Early Stage Support Group. She sees parallels between the struggles that she experiences as a caregiver for her father and managing the behaviors of her teenage children. 

For now, Danielle plans to continue making memories with her father—“ones he will not remember, but I will,” said Danielle. Her story highlights the complexity of staying compassionate with a loved one living with dementia, and the fatigue that can accompany being a caregiver. Feelings of uncertainty, frustration, and sadness are common, and it is important to seek emotional support as needed. 

The balance of caregiving for a parent while parenting children is complex. Resources and support are available. Find a support group to connect with individuals who know what you’re going through here. Other resources are available at alz.org/illinois/helping_you.

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

Honoring Michele Rust, Memory Rock Chicago Committee Member Who “Made Magic”

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.

Sheila , Rose, and Michele.

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 and Sheila.

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. 

Michele and Rose.

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

Running for Jerry, Running for a Cure

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.

Four adults stand with their arms around one another, smiling and holding beverages in front of a pool.
Dave, Anna, Tim, and Corinne in Tim’s backyard in California. 

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. 

Why I Walk…Katie’s Story

“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.