Games for Brains: The Longest Day

Gray Matters Games satisfies two passions for owner Joe Barron: inventing games that support brain health, and fighting to end Alzheimer’s disease.

Joe saw the toll that Alzheimer’s and dementia took in his own family. Both of his grandmothers faced the disease; one grandmother lived with her diagnosis for 12 years. Joe’s family had to make difficult decisions as his grandmothers progressed through the disease. His mom, being one of five children, found it challenging to find agreement with siblings on matters of their mother’s independence, such as her ability to drive.

Joe Barron at Walk to End Alzheimer’s 2017.

Despite the hardships that come while watching a loved one face Alzheimer’s, Joe and his family soaked up the moments they had together singing, dancing, and playing games. At one stage, Joe’s grandmother didn’t remember anyone’s name—but she remembered all the words to songs from her childhood. So, Joe and his family learned the words to a number of songs from the 1940s and 1950s and sang along with her. 

Joe Barron at Junior Board’s annual Paint the Night Purple event in 2018

JJoe’s game company Gray Matters Games “promotes community, encourages fun and gives back to Alzheimer’s research.” Games can be a great activity to do with loved ones facing Alzheimer’s or dementia. Playing games helps build new memories and cherish the little moments together. Studies show that keeping your mind active and engaged may delay cognitive decline. Gray Matters Games creates games the whole family can enjoy, along with more challenging strategy games for serious gamers. 

For those who haven’t faced Alzhiemer’s or dementia firsthand, Joe says not to be afraid of reaching out and asking for help. Joe first got involved with the Alzheimer’s Association Illinois Chapter through the Junior Board. He learned about the many free, timely resources available while serving on the board. Since the disease affects over 6 million Americans, Joe says anyone you stop on the street will know someone who has been impacted by the disease. Thankfully, more and more families and businesses are joining the fight for a cure by raising awareness and funds.

Fair Game in Downers Grove, IL,

The Longest Day is all about doing what you love. Joe turned his passion for gaming into a fundraiser to end Alzheimer’s disease in honor of his grandmothers, and for families everywhere. He’s helping us get closer to a cure, one move at a time. 

Learn how to turn your favorite hobby into a fundraiser or get your business involved with The Longest Day at alz.org/tld
Gray Matters Games
Fair Game

The Poetry of Caregiving

By: Caroline Johnson 

It was a chilly winter day. I turned to write a homework assignment on the whiteboard for my English students. As I wrote the date, January 26, I froze: It was the one-year anniversary of my mother’s death. I thought about her funeral and how the soil was too frozen at the time to cover the casket. I wondered if it had thawed now. I wondered where she was.

As the family caregiver for both of my parents, I witnessed firsthand the traumatic effects of memory loss. My father’s dementia was the byproduct of a rare neurological disorder; my mother had full-blown Alzheimer’s. As a way to grieve their loss, I wrote poems over a 15-year period. These poems were published this past May in a book dedicated to caregiving, entitled The Caregiver (Holy Cow! Press), which contains poems about Alzheimer’s, Parkinson’s, hospice, and many other concerns I encountered on this roller coaster journey of care. The poems became a sort of calling for me, and I am including some excerpts from them in this article.

A mother of five, my mother was a very creative, resourceful and extroverted person who made friends wherever she went. Even with her Alzheimer’s, she remained gracious, despite the cruel nature of the disease. She would “wander into each guest’s memory, making friends with strangers, whistling a tune each day” (“Borders”). Despite Rheumatoid Arthritis and a shunt surgery, she remained strong.

It was a gradual progression. She could never remember the lines in a play she was acting in. This morphed into more forgetting, then delusions, then wandering. Her home became foreign to her, and we had to put a lock on the door:

“I’m going home,’ you say confidently, in a cloud of delusion, as you step over yesterday’s daffodils, and walk away from the moon.”  (“Wandering”)

It was about that time when she began thinking there was another Caroline, one that was perhaps both evil yet also generous. I describe this in my humorous poem, “Donut Holes”:

“Do you know someone has given me a whole closet of clothes? Caroline, did you do that? … Or was that the other Caroline?”

Towards the end, my mother needed to be spoon fed. I describe this spiritual act in the poem, “A Mother’s Love”:

            “The nurse sits her up in bed.

              She winks one eye open and I feed her

              A spoonful of stuffing and gravy.

              With brown eyes she smiles, and the smile

              Lasts me the whole day—more than 77 years,

              More than one week in a hospital bed,

              More than a generation,

              More than the love a mother can show.”

My mother was a hospice volunteer in her younger days. Both my mother and father were on hospice at the end, and we welcomed the support, though it is always difficult when you witness someone dying: “Seeing Mother as Raggedy Ann / in hospice clothes / shakes me up, rattles my bones” (“Conjuring”). I was holding her hand when she passed. Like so many mothers, she wanted to make sure everybody else was satisfied before she could let go.

During the last year of my mother’s life, my husband and I participated in a Walk to End Alzheimer’s. We also organized our own private bike-a-thon, “Ride for Gladys.” She passed away shortly afterward.

I don’t remember when I wrote the poem, “Alzheimer’s Dream,” but I’m sure it was during the middle of her illness when she was struggling with delusions and trying to stay sane. In the poem, I write about how she has become a stranger to me; nonetheless, I, like so many daughters of mothers with memory loss, craved her company:

            “Let’s sit down here and talk.

              Let’s look at the weather.

              Let’s do everything to be together.

              Let’s try not to remember,

              Have a drink to forget

              That we ever once met a lifetime ago

              When I called you mother

              And needed you so.”

I still miss her, but she instilled in me a love of creativity, art, music and people. I will always treasure her special gifts, and these came through even when she faced the most devastating challenges.

Caroline Johnson has two poetry chapbooks, Where the Street Ends and My Mother’s Artwork, and more than 100 poems in print.  Nominated for the Pushcart Prize and Best of the Net, she won 1st place in the Chicago Tribune’s Printers Row 2012 Poetry Contest. She leads poetry workshops for veterans and others in the Chicago area. One of her favorite activities in the past was watching James Bond movies with her father. Visit her at www.caroline-johnson.com.

Black History Month Spotlight: Dr. Solomon Fuller

Solomon Carter Fuller, M.D., was among the first known black psychiatrists and a pioneer among Alzheimer’s Champions. The grandson of a slave, Dr. Fuller worked alongside Dr. Alois Alzheimer, who discovered the traits of the disease in 1901. Dr. Fuller is responsible for countless contributions to the field as a researcher and educator. The Solomon Carter Fuller Mental Health Center in Boston is named in his honor.

To find our special programs featuring Dr. Fuller’s legacy go to alz.org/CRF

Barrington resident shines light, honors father on winter solstice

“The waters are deep and wide and murky,” shares Barrington resident Justine Gregoire on the challenges of caregiving. Her father was diagnosed with Alzheimer’s disease in 2018 and passed away this spring. Justine faced unique challenges as an Alzheimer’s caregiver. She found valuable support through the Alzheimer’s Association, and today she fights for a cure by fundraising with The Longest Day.

Justine became a caregiver to her father in 2020, two years after his initial diagnosis. She began caregiving fulltime during a global pandemic. “My father and mother moved in with us during the pandemic so we could help care for my dad with my mom,” Justine shares. “It was one of the hardest times in my life.”

After progressing through the disease, Justine’s father passed away on Mother’s Day in 2022. She remained committed to raising awareness for Alzheimer’s disease even after her caregiving responsibilities ended. The Longest Day, a signature event from the Alzheimer’s Association, let her get involved on her own terms.

Named after the day with the most light — the summer solstice — The Longest Day asks participants to use their creativity and passion to join the fight for a cure. Justine and her husband Joel chose to host a golf outing on the summer solstice in 2022. However, her fundraising began months before on the darkest day of the year.

On December 21, 2021, the winter solstice, Justine shared an unfiltered look at a night in the life of a dementia caregiver on her social media pages. “People have no idea how hard the nights are. I thought telling that story on the longest night of the year was appropriate,” Justine shares. “I have never shared anything so personal on social media before.”

Her candor was met with an outpouring of support. Justine expected to raise $500 when she posted her story to LinkedIn and Facebook. She raised over $4,000 in the span of a few days.

“It was amazing,” says Justine. Between her winter solstice fundraiser and her summer golf outing, she raised $12,000 for Alzheimer’s care, support and research. She hopes that her honest story motivates others to join the fight for a cure.

“If you know or love anyone who is or will be 65, then the chance of them getting Alzheimer’s is [high],” Justine says. She’s referring to the fact that 1 in 3 seniors dies with Alzheimer’s or another dementia. “Those are high odds and there are zero effective treatments.

“[The disease is] not just simply forgetting something you said or did or a person’s name,” she shares. “Someone with Alzheimer’s forgets everything about who they are: what they liked to eat, how to sign their name, how to fix things.” As the disease progresses, intensive, around-the-clock care is usually required for a person living with the disease. Late-stage challenges include trouble walking, showering and breathing. “It is devastating to watch, especially knowing there is no hope, no respite,” Justine confides. The burden of caregiving can be emotional, physical, and financial.

“It is not peaceful,” Justine says of the disease. “I don’t want one more person to watch their loved one die like that. And it hurts me to know it’s still happening every day.” 

There is no guidebook for caregiving; but the Alzheimer’s Association provides resources for every step in the journey. Justine found the free, 24/7 Helpline (800.272.3900) particularly useful in choosing the appropriate care options for her dad and tackling the financial challenges of caregiving. “I used the helpline and received the best information and help I received from anyone during the course of the disease,” she says.

Every call to the 24/7 Helpline reaches a master’s-level clinician offering confidential support to people living with dementia, caregivers, families and the public. “You need to speak to someone who knows what they are talking about,” assures Justine.

Individuals looking to fight the darkness of Alzheimer’s disease are invited to register for The Longest Day. While some participants choose to do their fundraiser around the summer solstice, winter is an ideal time to start fundraising. Consider hosting a hot chocolate stand to raise funds for the Alzheimer’s Association; host a sledding competition with a donation entry fee; or share holiday pies in exchange for a donation to your fundraising page.

Register for The Longest Day and raise $200 by December 21, the winter solstice, to earn a free thermos. Get started now: https://alz.org/tld

Athlete honors father, family by running marathon to fight Alzheimer’s

Alzheimer’s runs deep in Alyssa Johanson’s family: her great-aunt and grandmother both passed away from the disease, and her father was diagnosed with early-onset Alzheimer’s nearly four years ago. An athlete her whole life, Alyssa joined the 2022 Bank of America Chicago Marathon ALZ Stars team to raise awareness and funds for a cure. 

Alyssa began long-distance running after college. “I remember watching a friend run a marathon back in 2019 and was so moved by her run that I woke up the next day and signed up for my first marathon,” she says.  

For her second marathon, Alyssa wanted to make her miles matter beyond the personal achievement. She discovered the Alzheimer’s Association charity team, ALZ Stars. 

“Raising money for a cause so close to one’s heart helps to lessen the burden and grind of marathon training,” shares Alyssa. “I signed up to run with the official 2020 ALZ Stars team and unfortunately due to COVID, we couldn’t run in-person in Chicago.” However, the pandemic didn’t stop Alyssa from making a tremendous impact.

“I still chose to run it on my own at home in California after raising over $6,000 for the Alzheimer’s Association,” says Alyssa. Her entire family – including her father – celebrated with her at the finish line.

Currently our highest ALZ Star fundraiser with over $12,900 raised for Alzheimer’s care, support and research, Alyssa is traveling to Chicago to conquer the Bank of America Chicago Marathon. She joins hundreds of ALZ Star athletes who have been impacted by Alzheimer’s and dementia. 

“It’s hard to put into words the amount of gratitude I have towards every individual who has helped me along the way — those who have donated to my fundraisers, trained with me, sent me a motivational text message. Doing something outside of your comfort zone with the support of an entire army of supporters is one of the most rewarding feelings that life has to offer.”

Alyssa’s fundraising has had a huge impact for individuals and caregivers facing Alzheimer’s – a responsibility she is well-acquainted with. “I moved home in August of 2020 to help my mom with caregiving duties, which lasted for about a year and half,” Alyssa shared. Her father’s disease eventually progressed, causing them to place him in a long-term memory care home this past March. 

Grieving a loved one with advancing Alzheimer’s disease doesn’t happen in a straight line. Some days I wake up hopeful, energized by the reminder that life can be so fragile so we must all make the most of it while we’re here, and other days I wake up deeply depressed, missing my father, knowing that while he is still alive, he is no longer the man that he used to be, stuck inside of a body and brain that are failing him.” 

Alyssa’s father won’t be in Grant Park to celebrate Alyssa when she crosses the finish line, but he will be on her mind as she runs. “My dad won’t be there this time around, but I’ll have him, my grandma, and my great aunt in my thoughts along every mile of the race as my motivation!”

Learn more about ALZ Stars and join the 2023 Bank of America Chicago Marathon team at act.alz.org/ALZStars2023

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.