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.