Month: August 2021

Shannon Elder began participating in the Decatur Walk to End Alzheimer’s two years ago. Her father was diagnosed with Alzheimer’s disease in 2016. Since his passing in 2019, Shannon began to reflect upon what her experience with her father and his illness was like.

Shannon was her father’s primary caregiver throughout his illness. Overall, Shannon felt that she did not know enough about dementia and did not feel that she had access to enough education or resources about the topic.

That is, until she found her way to the Alzheimer’s Association.

Shannon took advantage of Alzheimer’s Association Support Groups for adult caregivers of parents living with dementia, as well as various educational programs about caregiving and Knowing the 10 Warning Signs of the disease.

“[Caregiving] seems like something you can do on your own, or that you won’t need much support or help, but I was wrong,” Shannon shared.  She added that throughout her experience with her father, she was most struck by the toll that caregiving took on her own health, family and relationships.

Shannon got involved with several legislative efforts around caregiving and dementia in an effort to raise awareness. She has been writing e-mails to her local senators, sharing her story and informing them of the impact that dementia has had on her and her family. She believes that these personal stories shed light on how dementia impacts more than just the person with the illness–how it has a “ripple effect,” as she puts it. “This is a disease that it not hard just on the person it affects, it impacts everybody,” Shannon says.

For this reason, Shannon wants her senators to lobby for increased research efforts into dementia and finding a cure. She also believes there needs to be more access to dementia education and dementia care so that other families are able to understand what caregiving is and how to make the best decision for their families.

After Shannon’s father passed, two other family members were diagnosed with Alzheimer’s disease. She acted as caregivers for them, as well. Her Walk to End Alzheimer’s team is the “Alzheimer’s Warriors,” named to honor the members of her family who have been lost to this disease.

“They were the warriors,” Shannon added. “This walk is for them.”

Register for your local Walk to End Alzheimer’s at alzheimers-illinois.org/walk.

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

“Stay strong, you are not alone, and we will continue to fight for those who forget how to,” said Airen DeCarli. Airen is participating in the Lake County Walk to End Alzheimer’s on Saturday, October 2 in honor of her mother. For Airen, the Alzheimer’s Association signature fundraising event gives the opportunity to “walk closer to having a white flower, a survivor of this terrible disease. To get funding to run the tests we need so people no longer suffer and lose their memories. They worked so hard to make them.”

Airen’s mother was diagnosed with Stage 3 Dementia four years ago. “Due to the past year with the COVID-19 pandemic and her facility on lockdown for 13 and a half months, she has progressed to stage 6,” shared Airen. “There was minimal interaction during this time not only with her loved ones but also with facility members. Zoom calls depending on the day were usually confusing for her…Window visits were easier once allowed but my mom didn’t understand that she could see me and hear me through the headset, but couldn’t touch me because of the glass between us.

“It didn’t stop us though. In the cold months, I would wear layers and bring blankets and gloves and a hat while I showed her books with animal pictures. In July of 2020, I received a call saying my mom had tested positive for COVID-19, she wasn’t eating or drinking and they were taking her to the hospital. There were no Zoom calls at the hospital, only phone calls, to which mom didn’t understand anymore. She was scared and didn’t trust anyone.

“My mom pushed through…Even through the tough times, we made it work.”

Airen is grateful to now have easier access to her mother. “Visitations are in person now minus a few lockdowns every now and then for COVID-19 cases that arise. We go for walks around the pond at the facility complex, blow bubbles with bubble guns and she eats snacks that I know she loves. Sometimes a clarity moment pops through and she starts singing parts of a song that’s playing on my phone.”

Airen’s advice to other caregivers is to “be patient and know it’s okay that some days are better than others.” She wants those who haven’t faced Alzheimer’s or dementia to understand that “the caregivers are struggling just as badly as the ones with the disease. It doesn’t just affect the person with it, it affects all their loved ones, too.”

“We take one day at a time; some are better than others. Sometimes I cry after I leave her, sometimes I’m happy—it all depends on how the visits are. Each day is a roller coaster.”

Airen remains hopeful for a future without Alzheimer’s and dementia. “I will be strong and I will fight for her, for my family, and for all others going through it. I’m hoping together we can get that white flower.”

Join Airen in seeking an end to Alzheiemer’s and all other dementia by participating in your local Walk to End Alzheimer’s event. Register at alzheimers-illinois.org/walk.

Melody Mulvaney is participating in the Mattoon/Charleston Walk to End Alzheimer’s on Saturday, September 25 in honor of her mother. When asked what the event means to her, she replied: “It means potentially putting an end to Alzheimer’s by raising funds for a cure. It’s also a great feeling coming together with so many people that are like family. Everyone has a different story but are all there for the same reason.” She has been involved with Walk for eight years.

Melody encourages others to join her in raising funds and awareness for Alzheimer’s disease. She shared, “It truly is a horrible disease for the person living with it & for their family. They say Alzheimer’s is the long goodbye & I totally agree. You lose a little more of the person every day over time. As an Alzheimer’s daughter it is truly one of the hardest things that I’ve dealt with in my life. It robbed my mom of the things she enjoyed most in life! As a daughter/caregiver I felt completely helpless because I knew there was nothing I could do to make her better. I know that’s how [other] family members…feel as well.”

Melody’s mother lived with Alzheimer’s for about 10 years. Sadly, she passed away from the disease in June 2019. “I know in the beginning,” Melody said, “My mom was forgetting things but she still knew she was forgetting & it was very embarrassing for her. She thought everyone thought she was stupid. All we could do was try to reassure her that no one thought that. Do not argue with someone with dementia, it only makes them feel worse…Always remember, that’s the disease causing this, not your friend or loved one…They are still your friend or your loved one no matter what! We kept Mom at home as long as we could, but eventually, as hard as it was, we had to put her in a nursing home. She was on a regular Alzheimer’s floor & received very good care there.

“We were there with our Mom every step of the way. We never let her fight this battle alone….Her fight was our fight too!”

Melody and her two sisters visited their mother in her nursing home on a regular basis. They always went for holidays & their mother’s birthday. Melody was able to find support as a caregiver from her family and online community.

“Life with Alzheimer’s/dementia is a roller coaster ride, full of ups, downs, sideways & upside downs. If you are a caregiver, please get a support system. This disease is hard on the person that has it but also very hard for the family & the caregiver! Talk to someone,  have a backup so you can take a day away. I joined some Alzheimer’s support groups on Facebook & it helped a lot. As a plus I’ve made a lot of great friends (family really) through these pages. You just have to take it one day at a time & pray for the best!”

Join Melody in raising awareness and funds at Walk to End Alzheimer’s this fall. Find your Walk at alzheimers-illinois.org/walk.

On Monday, August 16, two of our policy victories were signed into law by Governor JB Pritzker! Special thanks to the partnership with our very own Lt. Governor Juliana Stratton and bill sponsors for making these successes possible.

Thanks to leaders State Senator Ram Villivalam and Representative Kathleen Willis, Senate Bill 677 was signed into law as the first bill in the nation to ensure doctors and other healthcare provides serving adults receive ongoing dementia training.

Thanks to sponsors Senator Melinda Bush and State Representative Natalie Manley, House Bill 848 was signed into law to extend the scratch-off lottery ticket to continue raising funds for Alzheimer’s care, support, education and awareness in Illinois. Together, we are making Illinois a dementia capable state!

Learn more about Alzheimer’s Advocacy in Illinois.

So far, Brian Gaughan has faced countless challenges, both in his professional life and his personal life. He worked as a police officer for 10 years and then as a firefighter/paramedic for 23 years. He is a father of 8 and a grandfather of 13 (with #14 on the way!). His latest obstacle presented itself in July of 2020 when he was diagnosed with early onset Alzheimer’s disease at the age of 61.

He noted that this diagnosis “wasn’t really a shock at all,” as he had been experiencing significant memory problems and forgetfulness. “It’s not like, ‘Where are my keys?’ It’s like, ‘How do I get to work today?’” Rather than dwell on his early onset diagnosis, Brian said that his diagnosis pushed him and his wife, Judy, to “do things that [they] would be putting off” and to start crossing things off of Brian’s bucket list. First thing on the list? A road trip across the Pacific northwest in an RV. Brian noted that his Alzheimer’s diagnosis caused him and Judy to rearrange their priorities and that Brian wanted to prioritize enjoying his life and having fun. In fact, his advice for anyone who has been recently diagnosed with Alzheimer’s disease is to “sit down and figure out what you want to do [in life] and go do it right away.”

Through the Alzheimer’s Association, Brian has found a supportive network and a newfound voice of advocacy and change. His devotion to the mission of the Alzheimer’s Association is evident in his immense involvement within the organization. Soon after his initial diagnosis, he regularly attended a regional Young Onset Support Group in which he connected with other people who were dealing with their own diagnoses. Recently, Brian was selected as a member of the Alzheimer’s Association national Early Stage Advisory Group, a role in which he will act as a spokesperson for other people with early onset Alzheimer’s, and participate in various speaking engagements. Previously, Brian provided testimony to an Illinois House of Representatives committee regarding mandated training for physicians. He hopes to do more lobbying in the future for increased education and research pertaining to dementia.

There is no doubt that Brian will continue demonstrating immense courage when faced with challenges throughout his dementia journey – just like he has done when faced with adversity throughout his storied career as a first responder. What’s next for Brian? Well, he and Judy are still figuring out where their next RV destination will be, but one thing is for certain – he needs to make it back to Chicago by the end of August to meet grandchild #14! 

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer