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.
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