Why I Walk… Jennifer’s Story

By:  Jennifer Steck

Our family unknowingly began this journey about five years ago.  It started with memory loss –  repeating the same questions, forgetting how to use the microwave, and getting lost when driving to a friend’s house for book club – somewhere she’d been dozens of times before.  Over time, the losses became more profound – the inability to count money when it was time to pay for a haircut, her choice to stop driving altogether due to the fear of getting lost or hitting the wrong pedal, her inability to write even her own name, and her continued difficulties expressing herself with the right words.  By the late summer of 2016, it had become a challenge just to make it through each day as she battled a cycle of insomnia and terrifying nightmares, thoughts that we were trying to hurt her, and often didn’t recognize us at all.  We were faced with the terrifying realization that we were losing her – quickly.  In October of 2016, at 63 years old, Mom was placed in a nursing home, requiring 24-hour care for a rare type of frontotemporal dementia.

My husband, Shad, my two boys, Tyler and Easton, and several of my coworkers joined me in the Walk to End Alzheimer’s in September of 2016.  It was the first Walk for all of them – and only my second. Ironically, I participated in my first Walk alongside my mom many years ago in honor of her father, my Papa Ralph.

At the Walk, I felt overwhelmed listening to Chris Postin and others share their stories of caring for someone with Alzheimer’s disease.  I couldn’t fight back the tears as I watched so many others lift their yellow and orange and purple flowers in silent acknowledgment of their own personal battles.  For the first time since we began our journey, I didn’t feel quite so lost or alone.  Caring for someone with Alzheimer’s, or any dementia, can be very isolating– both by the nature of the experience and often self-imposed.  As with almost any situation, it’s difficult for anyone to truly understand what you’re going through if they haven’t been through it themselves.  And, it has been incredibly important to us that we protect Mom’s dignity and legacy.

Mom’s legacy isn’t her illness.  Hers is a legacy of love for family – as a devoted wife of 45 years, a mother to two children, a grandmother to four perfect grandchildren, and as a daughter and sister.  It’s a legacy of service to others – to her community as a volunteer for numerous organizations, to her church, and 18 years as a children’s librarian at the Galesburg Public Library.  It’s a legacy of friendship and putting the needs and interests of others ahead of her own.

While she will not be defined by her dementia, her illness and the experiences it has brought are certainly helping to shape our family.  We can’t control what’s happening, but we can control our response. We work hard to find the small blessings of each day – some days it’s harder than others.  But, we’re holding dear the little joys like a smile, a kiss, a funny face, feeding Mom one of her favorite foods, her strong grip on my hand or arm when she’s trying to tell me she’s not ready for me to leave, or just sitting quietly and watching her rest peacefully.  As virtually all language has been taken from her, a clear “I love you” or “Thank you” means so much.

There’s no cure yet that will save my mom.  But I’m hopeful that I live to see the day when the first survivor beats Alzheimer’s disease – and other similar dementias.  We have the opportunity to support the efforts of the Alzheimer’s Association and other causes by raising money for research and support services.  We can help further much-needed research by making arrangements for brain donation – as our family has already done through the Mayo Clinic, with the assistance of the Brain Support Network.  In the meantime, and maybe more important than all of this, we can share our stories and help support each other.  On Walk Day, we’re reminded that we don’t have to fight this battle alone.

Pawsitively Walking for Alzheimer’s

While some teams will be lacing up their walking shoes for the Walk to End Alzheimer’s in Macomb, one team will be grabbing their leashes. Western Illinois University’s mascot Colonel Rock (also known as Rocky) the English bulldog will be participating in the Walk to End Alzheimer’s in Macomb along with the University’s next mascot, Ray, who will eventually become Colonel Rock IV. This isn’t the first time Rocky has participated in the event.

Joseph Roselieb, Rocky and Ray’s handler, did bring Rocky to the Walk in 2016 and decided this year was the perfect year to introduce Ray to the Walk. “Earlier this year, we were once again asked to participate and with Ray joining the family this past May, it just seemed appropriate and a fun event for not only me, but the dogs as well.”

Once the duo announced they had registered as a Walk team on their “Colonel Rock” Facebook page, the fan base of more than 3,200 followers began to donate.

“I was overwhelmed by the number of donations that came forward so quickly as we announced our participation,” said Roselieb. “It was an incredible outpour from friends, family, and colleagues and a very cool feeling when you get to move your goal two times in one week. This type of support makes me feel proud to be in such a caring community.”

Within four days the team raised more than $700 to help #ENDALZ. “It means a lot to me to be able to raise money and have my two best buds Rocky and Ray (Colonel Rock III & IV) participate in the Walk, said Roselieb.

“We are extremely grateful to all of them for their continued support and hope that the Macomb area joins Rocky as he leads our Macomb Walk to End Alzheimer’s on Saturday, September 22, 2018 at Veterans Park in Macomb,” said Cheri Robertson, Manager of Special Events for the Alzheimer’s Association Illinois Chapter.

“I have to give a shout out to Cheri Robertson who is the Special Events Manager for the Macomb Walk.”  said Roselieb. “Cheri contacted me a couple of times over the last several months and really convinced me of the success a team led by Rocky and Ray would have, not only from a fundraising standpoint, but from the excitement we would bring to the event as well.”

Overall, Roselieb, Rocky and Ray are glad to help raise awareness for the cause, “For a disease that affects so many people, I want others to see that WIU supports them as well as the cause.  This is a great event to raise awareness and bring people together and we are very humbled to be able to participate as representatives from Western Illinois.”

If you are interested in registering for the Walk to End Alzheimer’s in Macomb, or any of the other 24 Walks across Illinois, visit alz.org/walk to find a walk in your area and join us for a tail waggin’ good time!

Donate to Team page of WIU’S COLONEL ROCK III & IV MASCOTS:  https://bit.ly/2CJXESp

Why I Walk… Barbara’s Story.

By: Barbara Christ

My father passed away on April 6, 2018 after a 15 year battle with Alzheimer’s disease.  I watched him go from an intelligent, out-going man who loved to walk five miles a day to someone who was unable to move independently or speak coherently.

Although my dad passed away in April, I lost the ability to share life with him many years before.  Although I felt it while he was alive, it is only now since he’s passed that I’m angry at this disease for taking the years that I could travel with my dad to Fenway Park to see the Red Sox, or to go to the ocean with him, or to take him to see this beautiful country that he loved so much.  Alzheimer’s robbed him and me of his retirement years.  Not having him at my son’s wedding or my children’s college graduations (even though he was still alive) really hurt. Not being able to have him participate in other life events really hurt. There are a lot of people that have life events where a loved one can’t be there because they have passed before the event.  Alzheimer’s is a disease that robs people of those life events even before they pass.

My dad was one of 10 children. I have lost two aunts, two uncles and my dad to this disease.  Another aunt and uncle died of something else but both had started showing signs of Alzheimer’s before they passed.  That is seven children out of 10.  I’m guessing that the Perkins family has not seen the end of this disease.  I have 31 first cousins as well as two siblings, two nieces, two nephews and two children who will NOT go unaffected by Alzheimer’s during their lifetime.  The Walk to End Alzheimer’s is important to me because Alzheimer’s is not recognized as the killer that it is. The fact that there is not ONE SINGLE SURVIVOR is heartbreaking.

This will be my 5th year walking in the Naperville Walk to End Alzheimer’s, but my walk experience started in Lancaster, PA in 2013.  That will always be my favorite Walk because it is the first and only walk where I was able to participate in with my dad.  Although he didn’t really understand why we were there or what our purpose for walking was, he was more than happy to walk – because he loved to walk!  He has always been on my walk team, Mission ISpossible, as an honorary walker and he always got his Champion medal for raising $500.  I always looked forward to visiting with him after the Walk and giving him his medal.  He will ALWAYS be my champion.

The word Alzheimer’s needs to invoke the same emotional reaction that cancer does, and I don’t think it does yet.  When someone tells you that they have cancer, your first thought is that they could die. But then there is the hope that with the right treatment and care,  they could survive.  When someone tells you that their loved one has Alzheimer’s, I think that the first thought is, “oh, I’m sorry” but not that they WILL die from this disease and that at the moment, there is NO HOPE to be a survivor.  Today, right now, a diagnosis is a death sentence.  The person diagnosed will die from complications of this disease.  Whether it be your body not being able to fend off other diseases or because your brain stops telling your body to even function properly.  I think that people that have not experienced Alzheimer’s first hand know that eventually your loved one will lose their ability to recognize you or do things for themselves,  but they do not understand that it is a slow, painful process for both the person with Alzheimer’s and the family watching.  Those are the questions that I get asked the most.”How do you die from Alzheimer’s?” And the people that I answer seem shocked when I tell them.  They need to understand that it is the 6th leading cause of death in the US and the only disease in the top 10 that does NOT have a prevention, treatment or cure AND that if a breakthrough is NOT found, Alzheimer’s will continue to increase exponentially until the cost of care bankrupts our healthcare system.

If you haven’t experienced Alzheimer’s firsthand yet,  it probably won’t be long before you do.  I walked in a Breast Cancer walk in 2008 before my Grandmother and Mother were diagnosed with breast cancer, and can tell you that it was a moving experience even before it became a reality in my life.  The Walk to End Alzheimer’s is 100 times more moving because you know that almost everyone there has been affected by Alzheimer’s.  It’s pretty evident during the flowers ceremony.  I am always overwhelmed at the number of blue flowers that are lifted into the air.  I will have an emotional meltdown the day that a white flower is finally lifted, signifying that Alzheimer’s now has a survivor!  That is why I walk…to help us get to that white flower!

To register for the Walk to End Alzheimer’s or sign up as a volunteer, visit alz.org/Illinois.

Illinois Chapter Advocate Receives Prestigious Award

Our own Illinois Advocate and Ambassador to Congressman Quigley, Dani Jachino, received the Advocate of the Year Award at the Annual Alzheimer’s Association Forum in Washington D.C. Dani was selected from among hundreds of thousands of advocates nationwide, as she exemplifies the extraordinary attributes of a leader in the advocacy arena. Over the last six years, she has worked diligently with Congressman Quigley to inform his of our vital requests for increased research funding, along with various other legislative requests aimed at improving the lives of those living with a dementia and their caregivers. Her passion and determination have yielded great success, as Rep. Quigley is now a leader in the fight to #EndAlz. The Congressman thanked Dani for all of her hard work and for her friendship as they have been invaluable assets to him as a representative in Congress. Congratulations and thank you Dani Jachino!

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