From Pain to Piano: A Song for Caregivers

 

“I hope that this song- or anthem- is one that will draw out conversation with family members to speak about what may be going on in a family. This four-minute musical piece will wash over the tired, weary caregiver who might be in need of extra encouragement on their way to work,” said Julie Sparks, a Lombard resident who wrote the song titled,“Anymore”, as an anthem for caregivers.

Caregiving has always come naturally for Julie.

“I am a full-time caregiver for my mom and also helped take care of my dad and my aunt until they both passed away. I have absorbed all the emotions surrounding important medical decisions, the frustration of people that just don’t get the importance of normalcy in an otherwise unpredictable world of person living with Alzheimer’s, the avoidance or denial of a loved one not ready to accept the real facts of what is going on during the diagnosis phase, the pain that is shared the first time a loved one can’t recall who their adult child is, or when someone is having a challenging day and you have tried everything you can think of to soothe a troubled resident who can’t articulate the fear, the longing, or what they need.”  

When it came time to write the song, Julie drew inspiration from her own experiences. Not only was she a caregiver to family members but has also worked on advocating for seniors for about 10 years. Julie checks in with residents every Monday and works to comfort them.

“The amount of people that are strangers to them in a place that is now their home, but not their home yet- is so hard for them,” Julie said. “Every person has a story, talents, fears, and hopefully loved ones that want to see their loved one thrive and get settled in. This transition is impossible if they are not surrounded by people with a heart and passion for the senior community.”

When asked how the idea of the song came about, Julie claims that it “evolved from the first line as a day in the life of a caregiver, and the cry that sometimes goes unheard of understood by many…that just because someone can’t communicate verbally or physically move as they did in their 40’s or 50’s, and cognitively keep up in card game or conversation. This doesn’t void out who they were or more importantly to where they once belonged.”  

Though this may seem like only a song to some, Julie hopes caregivers find comfort in her lyrics.

“This song is important because the world needs hope and more songs that inspire people to not give up. They need to bring hope and healing and package that in a song that educates as well- is needed for such a time as this.”

Julie took her pain to a piano as a way to give hope to caregivers everywhere.

“I’m so happy that I was able to poetically paint a picture of a day in the life of a caregiver and the cared for.  I think it when a song can uplift and help families talk about the important topic of the cognitive health of our parents. The circle of life is revealed in a tender way. My mom is all I have left. I dedicate this song to her and hope that I am able to look back on her ending years and know I gave my all to be her advocate, as she was for me when I was growing up.”

Julie wants other caregivers to remember one very important thing: “never underestimate the power of touch, talk, and simple gestures of communication to someone living with Alzheimer’s.”

To hear Julie Sparks’ song “Anymore” visit http://bit.ly/2qzmVWC.

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