Peoria Volunteer Supports Caregivers: “You can’t survive this alone”

Written by Monica Vest Wheeler

When I wrote a book on coping with the emotional and everyday challenges of Alzheimer’s, dementia and memory loss in 2008, I had no idea how much I’d rely on my own words two years later.

In spring 2009, I noticed something peculiar about my father-in-law. A couple of family members agreed, but what was it. Hmm, I wondered if it could be dementia of some kind….

Worry about his behavior escalated a year later. My husband Roger, oldest of five, and I offered to move him from Florida to Peoria at age 83 where we could find assistance, as we were the ones with the most flexibility. We didn’t have a diagnosis yet, but he had slipped considerably in a year.

By this time, I had become involved in assisting Alzheimer’s Association support group meetings as a co-facilitator and engaged with many families. I knew we needed a thorough examination by a doctor familiar with dementia. Families must venture down that terrifying road first, because the longer you wait, the harder it gets….Denial will dig its vicious claws into everyone and disrupt families like nothing they’ve ever seen.

Within two weeks, we got that diagnosis: mid-stage Alzheimer’s. I stopped at the Alzheimer’s Association office in Peoria to fill out paperwork for a Safe Return bracelet. The staff member who I worked with saw my tears and gave me an extra big hug that day, commending me for doing the right thing by protecting my dad-in-law with that bracelet. 

Over time, people would say, “What are you going to do? You wrote THE book.” Yes, I had collected the experiences of families coping with the disease, and it was all raw, real and relevant. As my own caregiving journey commenced, I found that when I took my own advice generously served in my writing, it helped tremendously.

But my heart often got in the way. Love can set up emotional roadblocks that seem impossible to conquer, especially as his abilities seemed to slip daily and his behavior became more erratic as we tried two different assisted living facilities. We attempted medicines and different dosages to even out his moods, but the day his angry fist came within inches of my face, I knew drastic measures had to be put into place immediately. This was a little over two months of moving him to Peoria.

Roger and I searched for Alzheimer’s care facilities, and one of my sisters-in-law was able to visit and help as she was also shocked by the change in her dad. I put him on waiting lists at five units, with no idea when an opening would give us the relief we needed. My husband and I endured the most stressful stretch of our 31-year marriage as we waited and made daily visits to pacify his dad and try to address this obsession he had developed about money and accusing us of stealing from him.

We could not lock him in his room or inside the building, and he would occasionally toss lit cigarette butts into bushes, once leave the microwave running for 40 minutes, and often scare fellow residents with warnings of God’s wrath to be leveled against the evil people of Illinois. Other than that, he was a nice, lovable guy.

Hindsight tells me maybe we should have brought him into our home while waiting for that magic opening. We were so emotionally exhausted by the stress that we honestly didn’t think of that option. The assisted living staff were beyond patient and supportive, understanding our predicament…but all of us knowing we had to place him in a locked facility for his and everyone else’s safety. We no longer had a choice.

The August day I drove him to the Alzheimer’s unit with an opening nearly an hour and a half away from Peoria…one of the hardest moments of my life, tricking him into checking out this nice place with me…moving his stuff in while a staff member kept him occupied…and walking away as he banged on the door to let him out. It still hurts my heart.

But we could and had to sleep that night…for our own health and sanity. I had already told many caregivers, “I don’t want to read on your tombstone what a great caregiver you were.”

Our rollercoaster ride was not over as we had to deal with more medications to calm him, diffuse his anger, survive two stints in a mental health ward…to keep him vital but not doped up. It took a while but he found calm and an outlet by endlessly “walking the rails” down the hallways. That’s where I’d find him when I visited. Sometimes he’d nicely ask me to get him out, but with simple redirection, there were no more outbursts.

He was home now, where the staff came to love him, his smile, gentle nature and trail of candy wrappers. These folks became part of my family, as we united to keep him safe and comfortable…until he passed away peacefully May 12, 2011. I lived at the Alzheimer’s unit at his bedside the last 11 days of his life.

We designated the Alzheimer’s Association for memorial contributions because I could not have survived those difficult early days without the skilled and kind souls I found there…a classroom of life I continue to attend because they recognize that everybody and every body is different. Families share the same emotions of fear and grief, but their experiences are unique.

Here’s the rest of our unique story: We made the difficult decision to donate his brain for Alzheimer’s research in hopes of helping other families avoid our heartache. To our surprise, he had no sign of Alzheimer’s, but vascular dementia, likely brought on by the brain injury he had suffered 30 years earlier after a fall. It all made more sense…and eased our worries about Alzheimer’s in the family.

The most valuable lesson? No matter how strong you think you are emotionally and physically, you can’t survive this alone. Thank goodness I learned that before my own journey began.

Illinois Welcomes New Board Members

The Alzheimer’s Association Illinois Chapter is thrilled to welcome seven new members of our Board of Directors for fiscal year 2023. Our new board members commit their talents, passion, time and connections to strengthen the fight against Alzheimer’s. We thank them for their commitment to our vision of a world without Alzheimer’s and all other dementia, and we look forward to accomplishing incredible things together in the year ahead.

Scott Burnsmier – Operations Manager, University of Illinois
Hillary DeGroff – Associate Principal, Perkins Eastman
Jeremy Kruidenier – Executive Director and General Counsel, Wine and Spirits Distributors of Illinois
Osvaldo Montelongo – CEO, ConnectCareHero
Carol Shaw Burns, Ph.D. – Corporate Director of Resident Service, Vi Living
James Sherwood – SVP and Counsel, McGuireWoods Consulting and LLP
Ajay Sood, MD, Ph.D. – Assistant Professor, Rush University Medical Center


ALZ Star discovers passion for running, mental health

Washington state athlete Zoe Yoshinari has a goal of running all six Abbott World Marathon Majors – that’s over 157 miles! She will be halfway to accomplishing her dream when she crosses the finish line at the 2022 Bank of America Chicago Marathon. Zoe is running with team ALZ Stars, the Alzheimer’s Association’s charity team, on Sunday, October 9. Having watched her grandmother’s journey with dementia, Zoe is making her miles matter for a cause that is close to her heart.

Zoe joined ALZ Stars in honor of her grandmother, who lived with Multi-infarct dementia. “My grandmother, Barbara Walton, was a wonderful woman. Mother of four, grandmother of five, devoted wife,” shares Zoe. Barbara ran a hotel in the 60s and 70s while balancing family responsibilities. It brought “a multitude of stresses,” according to Zoe. She believes her grandmother’s job stress may have impacted her dementia.

“I never quite understood it at such an early age. Until I was living in New York in my late twenties,” confides Zoe. She experienced the stress and hustle of city life for the first time. The need to care for her own mental health was incredibly important, especially after seeing the toll that stress took on her grandmother. Zoe found solace in long distance running. 

Running was my daily therapy. It made sense that my mental health, just like my physical health, needed to be taken care of as well as maintained.” 

Her personal love of running grew into a desire to raise awareness around mental health. She found that caring for her mental health was just as important as her physical health, and she wanted to share the discovery with others.

“Completing my first marathon in New York in 2007 seemed like a natural evolution,” she shares. But it didn’t just “mark a check” on her bucket list. Instead, it “ignited a passion to complete the Abbott World Marathon Majors. Six Races. Six Stars. One Dream.” 

“Now 11 years on, at the age of nearly 43, I have the courage to continue working toward that dream,” says Zoe. Since completing the London Marathon in 2011, she is “happily married, a mother to two wonderful children and proud to have established a woman owned business.

“Fear had stalled my momentum but now I’ve found the courage to follow my heart, stand up for my dream and I’m ready to conquer another marathon.”

Zoe is excited to use her next marathon to raise funds and awareness for a disease that impacted her family. She says that running on team ALZ Stars gives her next race extra purpose and meaning. 

ALZ Stars athletes sign-on to raise funds and awareness for the Alzheimer’s Association and receive a limited entry to the Bank of America Chicago Marathon. The 2022 team has 298 athletes, and they already raised over $200,000! Zoe has surpassed her personal fundraising goal – but she isn’t stopping. 

At the beginning of the summer, Zoe and a group of running buddies held a fundraiser in San Diego with phenomenal results. They ran 4 miles every 4 hours in 24 hours, and raised support for an important cause. 

Zoe continues to prepare for 26.2 miles in Chicago this fall. She is getting closer to accomplishing her goal of completing all six Abbott World Marathon Majors, all the while moving us towards a world without Alzheimer’s and all other dementia.

Donate to Zoe’s fundraising page as she prepares for the Bank of America Chicago Marathon, and learn more about team ALZ Stars here.

Chicago skyline illuminated purple for Alzheimer’s and Brain Awareness Month

Photo courtesy of Sam Karow

The Chicago skyline was illuminated purple to raise awareness for Alzheimer’s and Brain Awareness Month (June) and The Longest Day. From Monday, June 20 to Friday, June 26, buildings were encouraged to light the signature color of the Alzheimer’s Association and display the slogan “ENDALZ.” The initiative was spearheaded by our Illinois Chapter Concern and Awareness committee in partnership with the Building Owners and Manager Association of Chicago (BOMA). Their Illuminate Chicago Lighting Program was created almost ten years ago to build support for charitable causes. We are grateful for their support as we raise funds and awareness to put an end to Alzheimer’s and all other dementia. 

This year’s participating buildings included the Wrigley Building, Prudential Building and Plaza, United Center, Brittanica Building, Soldier Field, Blue Cross Blue Shield, John Hancock, Willis Tower and Elgin’s 2500 Westfield building. All member buildings had the opportunity to participate and show their support for the fight to end Alzheimer’s.

To learn more about The Longest Day, visit alz.org/TLD
To learn more about Alzheimer’s and Brain Awareness Month, visit alz.org/ABAM

Photo courtesy of Sam Karow

Walking, Running, and Advocating for a Cure

Liz Miro isn’t sitting down for Alzheimer’s – she walks, runs and advocates for an end to the disease. Her maternal grandfather is currently living with dementia, and her father was diagnosed with Alzheimer’s disease in 2014. She teams up with the Alzheimer’s Association in multiple capacities to fight for a world without Alzheimer’s and all other dementia.

Liz is a longtime fundraiser with Walk to End Alzheimer’s, participating in the Chicago and North Shore events. She first participated in 2016, two years after her father was diagnosed with Alzheimer’s disease. The 2022 Walk to End Alzheimer’s – Chicago takes place at Soldier Field on Saturday, October 8. Events are hosted in communities across the state from September to October. 

“It’s a great fundraiser, but also a way to bond with people who have similar experiences,” Liz shares.

Liz wears her purple ALZ Stars singlet and poses next to her black dog.

She even gets her four-legged friend involved: for the past six Walks, Liz has brought her dog to Walk alongside her. 

Her involvement doesn’t stop on Walk day. Liz ran the 2019 Bank of America Chicago Marathon on the Alzheimer’s Association charity team, ALZ Stars, and raised close to $2,000. Her fundraising directly supported families facing Alzheimer’s disease and research efforts in Illinois and beyond. 

Liz has also worked with our Public Policy team on various advocacy initiatives. She traveled to Springfield with other volunteer advocates for Illinois Day of Action, where she urged state legislators to support policy priorities that make Illinois a more dementia capable state.

All of these activities are important to Liz because of her personal experience with Alzheimer’s disease. She shares the reality: “There is NO CURE and really, no effective treatment. 

“It’s so heartbreaking because you lose your loved one twice. Grieving someone who is alive is a very unique experience that most people can’t comprehend.”

Join Liz in fighting for care, support, research, and ultimately: a cure for Alzheimer’s and dementia. Register for your local Walk, run 26.2 miles to #ENDALZ on team ALZ Stars, or learn more about our advocacy work.