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

Shedding Light on the “Ripple Effect” of Alzheimer’s

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

Early Stage Advisory Group Member Embraces Adventure

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

Celebrating Life this Longest Day

By: Jodi Arndt

Growing up, our pantry was always stocked with Lucky Charms, Cheetos, and Matt’s Chocolate Chip Cookies, that my friends, siblings and I would dive into while discussing the day with my mom, Rosie. The kitchen table was a game of musical chairs depending on which Arndt kid had friends coming over as Rosie would usher her six kids and their friends in and out, being the fiercest Memory-Maker we knew.

Our house on 1202 was a hub for neighborhood kids, our school friends, and Mom’s annual Arndt Holiday Open House. She spent months planning the annual holiday party, preparing for a packed house and sending out the invites. We would pitch in to get the house ready for the festivities – whether it was helping our Dad, Joe, vacuum up minuscule crumbs five minutes before the guests arrived or helping Mom pass around hot dog roll ups. We enjoyed inviting the people we love into our home to celebrate, to be together, to have some drinks, and to make memories. Mom was truly the maker of memories.

It’s ironic that Alzheimer’s has erased all the memories she so purposefully and diligently worked to cultivate and create for us all. As the plaque tangles invaded and reached further into her brain, our Dad became the chief “memory-maker” with help from all of us. Things change. With Alzheimer’s, roles change. But the need to feel love, to celebrate life, and be amongst friends and family was what we all needed.

Alzheimer’s does not only steal memories from those affected, but can also isolate and stress the caregiver too. The Arndt kids have lost not only our beloved Rosie to this disease, but our father, became one of the thousands of caregivers to die suddenly and unexpectedly just last year–likely due to the stress that comes with caregiving.

For the Longest Day this year, we kids are going to honor both our parents during Rosie Posies’ Longest Happy Hour. For the event, we want to invite all of those that we love to celebrate life and honor all those affected by Alzheimer’s. From selling Dad’s golf balls at a lemonade stand, to a photo booth and face painting-we are channeling our inner Rosie and are excited to make memories with everyone who attends.

As Rosie would say, “Everything in moderation, kids, one water for every beer!” We know, Mom. We know.

We hope you will celebrate The Longest Day with us.

East Coast Artist Legacy Lives on

“She was truly a captivating artist,” Peoria resident, Mark Nickerson said, as he highlighted his mother’s artistic passion and flare. “Her colors, textures and style completely enthralled viewers into her work.”

The New York native’s mother, Juliet Holland, was a thriving world-renowned artist, whose creations and career spanned over 40 years.

“Her work has been showcased throughout museums, galleries, corporate offices and private collections around the world,” Nickerson said. “She also made an impact in the Japanese art market, traveling there annually over a 12 year period.”

Holland grew up on the east coast and spent most of her time between her loft in Manhattan on Broadway and Bleecker and a small beach cottage in Westport, Connecticut.
These locations fueled her creativity – her artwork was informed by the idyllic parallel of the ocean eroding the beach and the grittiness of the city.

“She was very connected to the changing landscapes around her,” Nickerson said. “She created her mixed media work from clay, wood, paint, sand, pastels, inks and other found objects.”
Amidst her blossoming career and trips with her family, something began to change.

“Around 2011 or 2012, my sister and I started to notice mom would forget things we just decided or discussed,” Nickerson said. “It took a while, but we started to notice this developing pattern.”
Holland, who was in her mid-70s at the time, pursued her doctor to receive a formal diagnosis. The time was difficult for the family, Nickerson stated. His mother was in denial about her forgetfulness and her diagnosis of early-onset Alzheimer’s disease.

“My perception changed with one particular event,” Nickerson said. “I was living in Peoria and she was in New York, I spoke to her weekly and while, we were talking she would ask for my address and phone number. That was fair – between our landlines and mobile phones in New York and Illinois, it could be confusing. However, I noticed this would happen with nearly every phone call.”

As Nickerson and his sister Avery, were grappling with the changes in their mother’s behavior and adjustments in their lifestyles, Holland fell and broke her hip, which required surgery to pin her hip.

“The anesthesia had dire effects on her,” Nickerson said. “She was hallucinating and incoherent for weeks. Over time, she did regain much of herself, but was never the same. Her reaction to the anesthesia caused tremors in her hand, and her diagnosis developed into Lewy body dementia with Parkinson’s.”

During this time, Cortland Jessup, Holland’s spouse, became her primary caregiver, managing every aspect of the pair’s lives as Nickerson’s mother’s health began to steadily decline.

“Cortland got in contact with the Alzheimer’s Association in New York,” Nickerson said. “They were great. Steve Klein, who worked for the Association, came to my mother’s apartment a couple of times a week and brought her all around the city.”

“Cortland managed my mom’s care as best she could for five years,” Nickerson said. “However, she was also living with this sense of loss and unfairness. The disease was robbing them of the time they had together.”

The struggle became very difficult for Nickerson, Avery and Jessup. In November 2017, Jessup unexpectedly passed of a sudden brain hemorrhage.
With the help from his sister and their families, Nickerson helped his mother grieve her loss, and moved Holland closer to him in Peoria.

Holland moved into Heartis Village Peoria, where she became a minor celebrity within the facility.

“The quality of care at Heartis was impeccable,” Nickerson said. “They were kind and gracious – my mom became a favorite there.”

Holland was given the opportunity to showcase some of her work in the memory care wing of Heartis.

Though she could no longer discuss her work with attendees at the reception – Holland was beside herself with joy. It meant everything to her, even though she no longer had the ability to explain her process, Nickerson continued.

“One of the guests was the Executive Director of the Contemporary Art Center, William Butler,” Nickerson said. “He liked mom’s work and he offered us the chance to exhibit her work at the center.”

On November 25, 2017, Holland passed after a long battle –leaving her artistic legacy behind.

“After my mom passed, I touched base with Butler to see if there was still an opportunity to put a show of my mom’s work together,” Nickerson said.

As a result, Holland’s work was on display at the Contemporary Art Center of Peoria from March 2 through April 13, 2018. A portion of the proceeds from the sale of Holland’s work were donated to the Alzheimer’s Association to further advance the care, support and research for all of those affected by a dementia diagnosis.

“This will not be the last time we will be showing her work,” Nickerson said. “We are in discussions to have another show at an upstate community college.”

Nickerson and his sister still plan to keep their mother’s spirit and legacy alive, by marketing Holland’s work across the country.

“She was truly a unique artist,” Nickerson said. “Her work, in my opinion, is thought-provoking and beautiful; I hope other people will see that too.”
For more information please visit: juliethollandart.com