Why I Walk… Jeff’s Story

By: Jeff Dorsey 

It was the summer of 1983 when my world was upended with a phone call from my mother in Kansas City saying that my father was diagnosed with Alzheimer’s. It was my first encounter with the disease. Having your father’s memory fade away and living four hours in made for a difficult period in my life.

His physical status affected my mother’s well-being as well. My mother never drove a car and was completely dependent on my father. In the early stages, he would forget how to drive back home from the grocery store, a trip he made weekly for years. One day he drove the wrong way on a one-way street, and he had to discontinue driving. For several weeks after that, I would drive to Kansas City to take them to the store and help out wherever I could.  I even offered to quit my job and move back home to assist, but my Mother would have no part of it.

After 18 months of being his caregiver, my mother made the brave and bold decision to put him in a nursing home nearby.  She would call a cab to visit him daily. This went on until he died in 1985. It was only two years after he was diagnosed and less than 6 months since he’d moved out of the house, but it seemed like 20 years. The constant concern for his well-being took a toll on my mother, brother and I – as well as our families.

Now, some 33 years later, one of my best friends and a former co-worker is dealing with Alzheimer’s. Having joined the Alzheimer’s Association Board in Quincy years ago and after going through what I did with my father, I could see the same symptoms in my friend. I suggested that he see a doctor, but he fought the idea. His quality of work began suffering from his forgetfulness and his frustration was increasing each and every day.

I discussed the issue with him and his wife again and he finally saw a doctor who diagnosed him with Alzheimer’s disease. His wife, like my Mom, was dealing with his safety concerns at home and I took on the caregiver role for him at work. Eventually, he could no longer continue working as his memory was fading.

It is a burden to live with Alzheimer’s disease, but the real burden falls in the lap of the caregiver.  The constant concern for the loved one’s well-being can have negative effects on the caregiver’s health.  They need more help than anyone realizes – unless you have been there yourself.

This is why I walk to End Alzheimer’s. This is why we need everyone to help where they can to end this dreaded disease. This is why we need to assist those with the disease as well as their caregivers.  I will be at The Walk to End Alzheimer’s on September 15 at Clat Adams Park in Quincy, IL.  Will you be there?  My friend and I really hope so!

Why I Walk… Pam’s Story

By: Pam Hembrough

I am an Alzheimer’s orphan. My mother died from Alzheimer’s disease when I was 47. Seven years later, in 2017, my father also passed from the disease. Taking care of my parents was a privilege – but also a ginormous responsibility.  Alzheimer’s is ugly and living with Alzheimer’s is hard, but I learned to celebrate the mini victories and cherish the simple, special moments.  I am forever changed since watching my parents’ lives fade. Their journey with Alzheimer’s taught me many things – being their constant advocate and consoler was probably the hardest.  I grew personally too.  Taking care of other’s basic needs tends to humble you and you become very sensitive to the needs of others who are struggling with health and aging issues.  I’m now acutely aware of the experiences “new” Alzheimer’s families are encountering. Life with Alzheimer’s has inspired me to become actively involved in the Alzheimer’s Association – hoping to ease the journey others are facing.  Being an advocate and caregiver for my parents forced me to “put on my big girl pants.”  Facing the constant challenges with courage and ensuring their dignity and care was priority #1.

The Walk to End Alzheimer’s is my opportunity to participate in an event that will honor my parents’ memory and also help to raise public awareness of the disease (and generate some funds!).  Further research for the disease is paramount to finding a cure.  Educational events are vital to helping families face Alzheimer’s and to deal with the impact it has on our society.  I will be walking again this year on September 8, 2018 in Jacksonville, IL.

Alzheimer’s doesn’t discriminate – everyone is or will be touched by the disease in some way.  Reports indicate that someone in the U.S. develops Alzheimer’s every 65 seconds. That is unimaginable.

It is important for others to know that every minute of every day, life with Alzheimer’s changes.  It is an all-consuming illness. There isn’t one aspect of life that isn’t affected by the disease, whether it is social, financial, legal, safety, daily care, medical, family, holidays or nutrition.  The best we can do is prepare for situations to change – sometimes instantly.  Excuse our moments of frustration; greet us with a smile and warm welcome. And remember, we still exist – life is just different now.

Why we need to end Alzheimer’s disease

What is the first thing you think of when you hear Alzheimer’s disease? Is it the scene from The Notebook where Allie suddenly remembers Noah is her husband, but minutes later is startled and confused when he calls her darling? Is it your beloved Grandmother forgetting your name at the last family party? Is it a family member, who has completely lost sense of who they are?

While some of these are accurate depictions of the disease, many people fail to understand what Alzheimer’s actually is. For diagnosed individuals, it is so much more than a little memory loss. It is a fatal type of dementia, and the most common type, that robs families of their loved ones. Symptoms of the disease get worse over time, becoming severe enough to interfere with thinking, eating, taking care of oneself and eventually living. If you have watched a loved one grapple with the severe outcomes of Alzheimer’s disease, you know the emotional pain and grief it can inflict on families.

The bleak reality is unless a cure is found, it is going to have a disastrous impact on all of us in some way. Currently, Alzheimer’s disease is the 6th leading cause of death in the United States. Nearly one in every three seniors who die each year has Alzheimer’s or another related dementia. Without any way to prevent, cure or even slow down the progression, the number of people in the United States living with Alzheimer’s disease, could nearly triple from 5.5 million in 2017 to 16 million by 2050. These are not just statistics, these are people; our parents, siblings, friends, neighbors, and co-workers, who eventually lose their lives to this undignified disease.

Alzheimer’s disease not only takes a hold of the person diagnosed, but it also takes a massive toll on the families, caregivers, and friends of those with dementia, who are at the center of this devastating crisis. In Illinois alone, there are 588,000 people providing over 670 million hours of unpaid care to someone with Alzheimer’s disease. The cost of this care is valued at more than $8 billion. Dementia caregivers tend to provide more extensive care for longer durations than those who serve older adults in other conditions. The effects of being a family caregiver, are generally negative, with high rates of social isolation, psychological difficulty, and financial hardships – leaving caregivers vulnerable to further emotional and physical grief.

Having a place for all those affected by Alzheimer’s disease to turn for information, care and support can drastically improve the quality of life for all involved. At the Alzheimer’s Association, we are constantly working to end Alzheimer’s disease, so families no longer have to bare the burden of losing a loved one. Until that day comes, we strive to provide support and resources to those affected to make their journey a little easier.

As we move further into 2018, we encourage communities across Illinois to help eliminate this devastating disease. It’s a disease that could affect you, but if we rally together, we can achieve a world without Alzheimer’s in the future.

To learn more about Alzheimer’s disease, or to get involved with the Alzheimer’s Association Illinois Chapter, visit alz.org/illinois, call 309-681-1100 or visit the Peoria office at 614 W. Glen Avenue.  

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