Richard Apple: Family History with Alzheimer’s

Story by Richard Apple.

My family history with Alzheimer’s seems to extend back centuries. I once read a diary written by John Borland, my ancestor who came to this country from Scotland in 1843 with his wife and ten children. Just before departing to this country, he went to visit his mother. John had written a description after his visit, emphasizing that she did not know him. Those words say it all. Alzheimer’s wasn’t known as a distinct disease until the 1900s, but it may well have caused her inexplicable confusion.

I have witnessed Alzheimer’s produce devastating effects firsthand. Both of my grandmothers, two uncles, and my mother faced the disease. The history is very long, which comes with a mix of emotions. The long history of Alzheimer’s in my family is a legacy of joy and love mingled with pain and grief. Happy and painful feelings. My family history puts me at risk for Alzheimer’s, but it has also given me resolve to help break the chain of suffering caused by the disease. The history gives me the drive to help cure this disease.

I enrolled in my first trial at Great Lakes Clinical Trials in Chicago immediately after I retired four years ago. This is my attempt to make a difference in the search for a cure. The experience was extremely positive, and I have enrolled in three more studies since I went for the first time. I have also encouraged many people to become citizen scientists like me, and it would be an incredible thing to see people join me. Even if a study you participate in does not immediately yield a cure or effective treatment, every clinical finding adds a piece to this puzzle that needs to be solved.

My family experience with Alzheimer’s has been intense but unfortunately not unique. Supporting my Uncle Ralph opened my eyes to the realization of how ill-equipped our healthcare system is to care for people with dementia and the lack of resources to support their caregivers.  Alzheimer’s isn’t just a family tragedy because I see it as a growing public health and economic catastrophe. According to the Alzheimer’s Association, over six million Americans have the disease currently. As the population ages, this number will more than double by 2050, potentially overwhelming the health and social service systems. There needs to be a solution to make a change.

If you have a family history of dementia or concerns about your memory, you should consider volunteering for clinical research.  It can give you a sense of purpose, and you may learn about your health. There is information located online to help you connect with a local research center.

When I think about my mother, I obviously remember the struggle of caring for her in her final years, but I also cherish memories of the vibrant life she led. Into her late 70s, she walked five miles every single day, brimming with confidence and strength.  Even with her disease, she was able to experience joy, and it was my mission to help bring her those opportunities.  I learned a lot from that time.  I am now trying to identify the things that bring me joy and communicate them to my family.  Providing them with a plan to guide my care and support will ease their journey and maximize my opportunities for joy if I develop Alzheimer’s.  A friend of mine who lost his wife to Alzheimer’s suggested that I pay careful attention to the potential early signs of the disease. Tracking these potential signs gives me a sense of control, but it also can spark my fear as I see subtle changes in my driving, attention span, and daily living.  For example, I will frequently start to put things into the pantry that belong in the fridge.  At this point, I can catch myself, but I worry that a day may come where I start leaving them in the pantry.  Here is a list of what brings me joy: faith, community, friendships, intense trail running, biking, trying to eat well, caring for my health through regular check-ups, taking my cholesterol and blood pressure medications, enjoying time with my young grandchildren, and having dates with my wife. Exercising my brain and body with activities that give me joy will help maximize my health so that I can be as resilient as possible to delay and possibly prevent the onset of symptoms.

We need to break the chain of suffering caused by Alzheimer’s.  I can’t bring back my mother, but I can do my part to find a cure by joining a clinical trial and creating a plan to help guide my family in maximizing my ability to experience joy.

Learn more about Alzheimer’s and dementia trials looking for volunteers at alz.org/TrialMatch.

Natalie’s Grandfather: Steve Mizerik

Story by Natalie Mietus.

Merriam Webster Dictionary defines memory as “the power of reproducing or recalling what has been learned and retained from activity or experience.” When first reading this definition, one word stood out to me in particular: power. Although it may seem expendable at times, the ability to remember one’s life experiences, feelings, and thoughts is a privilege. Our way of remembering our lives is just that: ours. No two people in this world can recall the same moment in their lives the same way, offering us each an opportunity to make our lives our own original stories. The complication with stories, however, is that others must share them to stay alive. We can each make unique marks on this world, but without our voices to speak out, we are left with the perceptions of others to carry on our legacies. My grandfather lost his battle with Alzheimer’s in 2014. Writing this message today, I hope to carry on the legacy of my grandfather, Steve Mizerik, and to support the families and individuals who have been affected by Alzheimer’s in their lives.

Growing up, the days my grandparents would come to visit town were my favorite times of the year. Weeks in advance, I marked my Disney-themed calendar with a bright pink marker and counted down until I could see them face-to-face. As I got older, I began to notice a change in my grandfather. It seemed as though with every visit, my grandfather was acting less and less like himself. He no longer knew all the words to our favorite Frank Sinatra songs on his record player, his favorite war stories and knock-knock jokes was reiterated more so than usual, and he consistently lost items in his home. In addition to this, I found my grandfather asking more and more questions but soon after forgetting their answers. My biggest tipoff that something was wrong was the day that my grandfather officially forgot my name.

At that moment, my life felt like a movie. The way I saw it, the only reasonable explanation could be that it wasn’t really my grandfather before me but instead a paid actor who wasn’t good at his job. This was my first true encounter with Alzheimer’s and the pain that accompanied it from a loved one’s view. Although I was physically seeing my grandfather, he wasn’t the same man I grew up with. He could still make me laugh and loved his grandchildren unconditionally, but the world seemed completely foreign to him–something he often described as dark and lonely. It pains me to think about all the thoughts that must have crossed his mind when nothing around him could contribute the same familiarity and comfort that it used to.

The best decision I ever made was looking at the situation as a chance for a new beginning–and an opportunity to get to know my grandfather in a way that I never had prior. Each time we saw each other, he could introduce himself to me all over again, and I did the same. From there, we could review the basics–our favorite colors, our favorite foods, or even just the things that made us smile, like sunny days and knock-knock jokes. I got to bring joy to his face when I played him his favorite music from his record player, even though he no longer remembered the words, and continuously heard him say, “Wow, this is a great song. I should listen to this more often”. Times like these made me love visiting my grandfather even more than I did as a kid–something I didn’t think could be a possibility. He got to experience life like it was the first time, which can be even more valuable sometimes than always knowing what to expect.

I hope that by sharing my grandfather’s story, anyone reading this will be inspired to look at Alzheimer’s from a new perspective. It is a painful, scary, and lonely illness, but there is a bright side to it – should we accept the challenge of finding it. This part of my life was something I certainly struggled with for much of my life, and I want to be a beacon of support for anyone else who may need it. As Merriam Webster Dictionary put it, having memories is indeed power. However, not all superheroes wear capes. Memories or not, my grandfather is my superhero. As I write this today, I consider Alzheimer’s to be his superpower.

Peggy’s Story: The Story of Her Mother

Story by Peggy Liker.

I’ll never forget the day in the fall of 1987 when I received a call from a sister who lived near our mom. I had already been working as an RN for 14 years, so my blood ran cold as she told me of some very uncharacteristic behavior our mother was displaying.

The woman who loved to shop would no longer go to the mall (she became very agitated and anxious). She sent checks to her grandchildren, signing them with newly poor penmanship. She loved to drive fast, having competed in drag racing when we were very young but was getting lost going to familiar places. She put things away that later she could not find. My sisters brought her up to where I was, so the cardiologist I worked for could evaluate her. He confirmed with simple tests what we feared; we then saw a neurologist, all in the name of “getting her a good check-up.” After ruling everything else out, he diagnosed her with advanced Alzheimer’s Disease at age 54. We didn’t tell her.

We told her she just had normal forgetfulness. We knew that the worse she got, the less aware she would be. She was SO relieved that it wasn’t “that Alzheimer’s or something.” (Aricept was still on trial). We (her children) helped her realize her dream of going to Hawaii, then to Graceland due to her love of Elvis. She also got to go on a cruise before her symptoms worsened. It was just a few years before she had to go to a nursing home for her safety and care.

She, being otherwise healthy, lived for 15 years until she was 69. But we had lost her already when she forgot who we were, so we lost her twice. She was robbed of meeting most of her grandchildren, and we were robbed of her love, presence, and her memories. Watching her deteriorate mentally and physically was so very painful for us. No one should have to experience that. Working to end Alzheimer’s is a labor of love for myself and our sibling walk team, Jean’s Genes. As my sister put it when she was told purple must be her favorite color, she said, “purple chose me.” We work in the hope of eliminating this disease forever.

Kevin’s Story: Ed Daley

Ed Daley in the local newspaper.

Kevin Daley was not a runner. In fact, he hated running. But his perspective on the sport changed in 2007 when his father, Edward Daley, was diagnosed with Alzheimer’s disease. Ed loved running and carried on with the activity despite his diagnosis; he was an avid runner since the early ’80s and was slow to give it up. However, he soon become confused during his runs, which led Kevin to lace up his own running shoes. Kevin started to participate in small races with his father to help guide him. Kevin knew from that point that running provided a beautiful connection with his father.

Kevin joined Team End ALZ at the Alzheimer’s Association Boston Chapter in 2011. He ran the Boston Marathon for his father and those who have experienced Alzheimer’s disease. He ended up running six marathons including Chicago, Boston, and New York. This year, Kevin joined our Chapter’s ALZ Stars team and will run the Bank of America Chicago Marathon. This will be his seventh marathon, which is very special to him: his father ran seven marathons. Kevin is looking forward to doing his seventh marathon in honor of his dad. 

Kevin with his father Ed after completing Boston.

Kevin and his father were always very close. As the youngest in the family, Kevin spent a lot of time with his father. They had similar professions, looked alike, and had many other similarities. Kevin’s father Ed would run every morning in any weather condition. Running was important to Ed, and it is now important to Kevin. 

Kevin’s father passed away in 2012. Now, running helps Kevin feel connected to his father; he feels that connection whenever he crosses the finish line. Kevin will be running with team ALZ Stars in Chicago in October 2021 to honor his father. Kevin is enthusiastic about running with the Alzheimer’s Association, and helping in any other way he can to help families and individuals impacted by Alzheimer’s disease. He raises awareness and funds to support dementia research with the hope that one day fewer families will face this disease.

Donate to Kevin’s ALZ Stars fundraising page and help him make a difference. To learn more about ALZ Stars and join the team, click HERE.

Reason to Hope Co-Chair: Jennifer Keeney

Jennifer & her father, 2005.

As we enter spring in the Midwest, I love the smell of baseball in the air, the laughter of kids running around the neighborhood, and the anticipation of warm, sunny days ahead after an unpredictable round of (in my case, Chicago) weather. It also gets me thinking about the time of year when I was growing up. I would look forward to the summer road trips with my family — with my mother and father serving as tour guides. My parents were lovers of history, so we didn’t typically hit the beach. We would head east to Gettysburg and Williamsburg (and much along the way) and then head west, weaving through various points of interest on our way to see my brother in the wide-open spaces of Wyoming. During other times of the year, we would fly to California to see my sister and her family, where we would partake in the epic picnics and family talent shows involving her 11 children. Epic is an understatement. These are moments I will treasure forever — especially now that I have lost my father, and I now watch my sister navigate the terrible path of Alzheimer’s disease. I think about that every day, and it is my Reason to Hope that my children will not grow into their adult lives without seeing a cure for this disease.

David — a proud veteran of WWII and Korean War.

My father, David, had a passion for things such as seeing trees grow and blossom in our yard, as well as digging deep into our family history. His love to learn and share has fueled my desire to help end the disease that robbed him of enjoying these things later in life. A man so incredibly vibrant was not the same man I said goodbye to in 2014. He was never bitter, even in the early stages when he knew what was happening. He always, without fail, knew his family would make the right decisions for him and loved us with his whole heart. Shortly after his death, I attended a business event for human resources and met a member of the Illinois Chapter of the Alzheimer’s Association — it was an emotional event for me as it became so clear that I had no idea what resources were available for us. My family was focused on my dad and making decisions with what I realize now was very little information. In fact, at the time of his death in 2014, there was still a hesitation among many doctors to officially call what was happening dementia, let alone Alzheimer’s. It was at that event that I made the decision that I would get involved to do my best to spread the word to others facing this disease. I also wanted to help those around them that are trying to navigate so much that comes with it. I have been involved with the Illinois Chapter ever since through various boards and committees, the annual Walk, the Longest Day, and of course, Reason to Hope.

My first Reason to Hope was in 2015 in Chicago. I will admit I was skeptical about how a one-hour luncheon would pack the punch of other types of events that I had attended. I was so impressed. More than that, I was inspired. My guests felt the same (many who are still attending six years later). In each Reason to Hope that followed, I have experienced stories from so many points of view. I have learned about the science and legislative advancements that people like me can influence. I have made new friends, met many caregivers, and have watched individuals diagnosed with the disease take the stage to talk about their lives before and after. I continue to stay involved for all of them and everyone who has this disease. I have learned over the years the list of those not connected to Alzheimer’s is becoming something rare. When I have invited people over the years, I quickly learn of their stories, and we all have much to learn from each other.

Jennifer’s sister, Trish.

I’m excited to be co-chairing for the first time year. 2020 has created a lot of reflection for many, and I’m not the exception. Katie Lane approached me about being a co-chair, and I had shared with her that I had written a commitment to myself in 2021 to get even more focused in my efforts with finding a cure to end Alzheimer’s. Serendipity. I carry my father’s memory with me everywhere, and I draw my inspiration from my sister, Trish, who has been living with the disease for several years. We are so far away from each other, but she has one of her daughters, Audrey, living with and caring for her. I receive weekly texts and pictures reminding me that while some of her memories are lost, her beauty and love for life are stronger than ever. She is another Reason to Hope.

Jennifer during Walk 2020.

This year’s event will be virtual, which in many ways opens up the doors to even more people to hear the message. The event is not limited to the four walls of a banquet room. I would encourage you to consider taking one hour on April 29, 2021, to attend. Learn more and register here. You will experience learning, connection, and inspiration. The program will involve updates on the progress being made in the fight against Alzheimer’s, and it will provide a chance to meet with other guests to share stories and build connections. Whether you have experienced the effects of this disease first-hand or not, I have no doubt you will gain insights into how you can make a difference in the future. I hope to see you there.

By: Jennifer Keeney

Join us for Reason to Hope on April 29 at 12pm CT. Register at ReasontoHopeIL.givesmart.com.
If you are unable to attend, please consider making a donation to support the mission of the Alzheimer’s Association.