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 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 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.
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.
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.
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.
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.
Ever since I was little, I have always been very interested in science. As I grew up, that interest in science transformed into a passion for the brain. One day, I watched a documentary about Alzheimer’s Disease, and I was fascinated. I began searching the web, reading literature articles, and watching videos about the disease. After learning about the devastation this disease is capable of, I wanted to help in any way I could. I decided to join a research lab at my school, which investigates the immunological component of Alzheimer’s Disease. I also began volunteering at a local dementia care center. As time progressed, these experiences validated my passion for finding a cure and ultimately inspired me to pursue medical school to become a neurologist where I will be able to research the disease and help treat those affected by it.
Due to the COVID-19 pandemic, I could not work in the research lab or volunteer at the dementia care center. So, I started looking for different ways to make a difference. I had heard about the Alzheimer’s Association and the Walk to End Alzheimer’s, which led me to do research. I contacted Gina Henrickson, the manager of The Longest Day (one of the Association’s largest fundraising events), and the rest is history. I was graciously welcomed into the Association and decided to join the volunteer recruitment committee.
After I got to know the other committee members, I realized most of them had someone in their family who has been affected by the disease. Although I have never experienced Alzheimer’s disease within my own family, I still felt a personal connection with their stories. It is truly inspiring to be surrounded by others that share my passion for helping those affected with dementia.
Now I call on you! If you are passionate about the disease and want to make a difference, this is the opportunity you have been waiting for! Feel free to contact me if you are interested in learning more about the resources the Association offers, opportunities for volunteerism, info about The Longest Day fundraiser, or anything else!
To honor Elsie, who battled Alzheimer’s, her daughter Lisa Stover started Presto Real Estate. Alongside Elsie, Lisa navigated the process of transitioning a loved one, and experienced first hand the challenges that often arise in the relocation process. Lisa created a system to help families through this challenging journey, now and in the future.
My story is like so many others, yet so uniquely mine. Like all diseases, you fight it at first, rejecting the diagnosis and believing it will be different for you and your family. Unlike many families, we did not wait too long before finding our mom a safer place to live. The worries of coffee pots and irons staying left on were enough incentive for us to convince her that a move was a good idea. Of course, there was resistance and accusations that we were forcing her to do something against her will. It was true .. we were. Luckily for us, her first stop to supportive living brought joy, activities, and folks to socialize with that were just like her. As we set up her new apartment with familiar pictures and items from home, she acted like a high school graduate going off to college and getting her place for the first time. We felt blessed and relieved that we didn’t have to worry anymore. This lasted 2+ years, and the disease remained status quo.
Overnight, something changed. The staff and doctors were not surprised. They all told us, “this is how the disease goes.” It is unpredictable but follows a relatively predictable pattern. Here we were, in a new place. After a hospital stay and a tumultuous few days in rehab/observation, we knew she was not going back to her apartment. I slept in a chair by her bed because I was the only one she would trust. My brother stepped in for my shower and sleep breaks, but this was not a long-term plan. With no money left to afford a more aesthetically pleasing environment and a private room, skilled nursing was going to be her new home. Again, once she stabilized and we set up her half of the room, she was okay – not great. Being completely ambulatory at this point, she was in a secure unit which meant locked in, and she knew it.
As the daughter of a strong-willed woman, nothing can stir more guilt than locking your mom up. There were days she would yell at me and days she did not want to see me at all. I would do her laundry every week; I would convince myself that this would preserve the color and keep her clothes looking their best. It was guilt, and I know now that it was okay. We all have to cope in our way with this thing.
Elsie lived there for over six years. She received loving care from nurses and CNA’s who will forever be my angels! They did things that I couldn’t. They understood the world she lived in, and they helped me come and go with confidence that she was in good hands. It was far from perfect, and I wasn’t always pleased with the management. Life is just like that… I am not always pleased about many things. I learned so much through the years of Alzheimer’s. I learned how to accept and how to be more patient with others and myself. I learned how to be grateful for small things and that there are angels among us.
On August 28, 2020, Elsie went home to be with Jesus. We lost her during the pandemic (not to COVID-19), but most certainly because of it. I believe her will left her as she could not see or hear her caregivers any longer. FaceTime was not a good replacement for our visits, and she never really connected with us again. We were again blessed that when she went on Hospice because there were no cases in her wing. We were able to be with her. The morning she left was peaceful and one of the most sacred days of my life. She held me on the day I came into this world, and I was privileged to hold her on the day she left.