An interview with Jordan Kavanaugh, Illinois Chapter Junior Board
My mom and Dad both passed away from Alzheimer’s disease. My mom was diagnosed at the very young age of 64 and progressed rather quickly. She passed away just 4 short years later and in that time it stripped her of everything and made her both a figurative and literal skeleton of who she was. She had to retire early because she could no longer do her job. They got a new computer system at work and she couldn’t learn it and didn’t understand why. Accommodations weren’t made at work because she didn’t want anyone to know she was sick. She had to stop driving because she would get lost. She went from being the social planner of her friends to not wanting to go many places. She was always friendly and outgoing, but as she got worse she developed a fear of sounding stupid and not being able to understand or follow a conversation. She became quieter and just observed rather than participating in social situations.
My Dad, her partner, became her caregiver and took on a much different role than he ever had before. My mom always handled the cooking, bills, shopping, etc. and those routine tasks became overwhelming, confusing, and hard to accomplish. Rather quickly, she stopped recognizing her own home, not liking the same foods or any foods at all some days, couldn’t be alone for more than a few minutes, and then not at all. In a matter of a few years, we watched her slip further and further away… there wasn’t anything we could do except try to make the time she had as peaceful as we could. As hard as it is on the family, it is much scarier not recognizing your home, family, friends, and being confused and disoriented all the time. When I would leave my parent’s house to go home, I would sit in my car and cry and wonder how this awful disease could destroy someone’s brain and whole life so quickly.
The last few weeks were some of the hardest days of my life. She completely stopped eating, walked around like a zombie, and then would collapse because she was tired. Alzheimer’s robbed her of so many things until she had nothing left. Five years later it still brings tears to my eyes. My mom lost her battle with Alzheimer’s on October 14, 2017.
Just a year later in 2018, my Dad started having some difficulties, but the symptoms were different than my mom’s early symptoms so we initially assumed it was grief or anxiety from losing his wife, living alone, and having the life he knew for nearly 40 years flipped upside down. Sadly, that was not the case. We went to a few doctors, ran the usual tests, and were hoping for some answers. Never in a million years did I expect the neurologist to tell us that my Dad too had Alzheimer’s. With my mom, I was confident in what was going on and pushed for the diagnosis so we would finally have answers, but with my Dad, I was blindsided. How could my Dad, my only parent left, have the very same disease I had just lost my mom to? His diagnosis hit hard; I was totally unprepared for it. I couldn’t watch another parent fade away. I couldn’t lose my Dad. This time it was totally different. My Mom had my Dad to care for her, she wasn’t alone. Now my Dad was living alone and my sister and I were the only ones left to care for him. Initially, we managed, going there for meals, calling a few times throughout the day, doing grocery shopping, and taking over the bills, but very quickly, that changed. We needed caretakers to help, adding more and more hours to their schedule to cover the day, and asking friends to help. We got by, but barely. It was a full-time job while still working full-time and managing our own lives. My Dad seemed to go downhill more quickly than my mom in some ways, but he always knew who we were and somehow kept it together for us even when he was having hallucinations and was confused about his surroundings. He knew he was sick; he wasn’t shy about telling anyone about his condition. He knew that he was struggling and that things didn’t make sense. Maybe it was because he watched my mom go through the very same thing or maybe because Alzheimer’s impacts everyone a little differently. My Dad passed away on December 2, 2020, just two short years after he was diagnosed.
Alzheimer’s not only robbed my parents of so many years but also stole precious time with them from my sister and me. Holidays, birthdays, special occasions, and even normal days aren’t the same anymore. Seemingly overnight everything started to change. There was a total role reversal and the people who raised and took care of us now needed us for everything. It was very difficult to see routine tasks and activities become such a struggle for my Mom and Dad, especially at such a young age.
What Alzheimer’s Association programs and services have benefited you and your loved one(s)?
The support groups. My Dad, sister, and I went to quite a few support group meetings when my mom was first diagnosed. We didn’t know what to expect, how to best handle things, and what was coming in the future. We wanted to be as prepared as we could. They gave us so many good tips and helpful advice to help us navigate our “new normal.” One of the most helpful tips was to get my parents’ affairs in order before my mom got to a point where she wasn’t of sound mind to sign documents. While this isn’t a fun task, it made things much easier to deal with in the end and to know we were honoring her wishes.
Why did you join the Junior Board?
I joined the junior board in 2015 in honor of my mom. I wanted to do something to fight against this terrible disease.
My friends were always supportive but having peers who understood first-hand what I was going through was invaluable. Meeting a network of people who were experiencing or who had previously experienced the devastating effects of Alzheimer’s helped me navigate. They offered so much advice and support. The friends I have made on this board will be lifelong friends. The Junior Board is a solid group of young professionals that I am incredibly lucky and thankful to be a part of.
Now that I am no longer caring for parents with Alzheimer’s I am fighting harder than ever before…we have to find a cure. I will continue to fight, advocate, and raise awareness until no one else has to battle or watch a loved one suffer from Alzheimer’s. And hopefully one day we have our first survivor.
Why do you believe others should raise funds and awareness for Alzheimer’s disease?
Just because you aren’t currently impacted by Alzheimer’s doesn’t mean you won’t be someday. I never thought my mom and then my Dad would be. I may even be one day. Of the top 10 causes of death globally, Alzheimer’s is the only one without a cure… yet.
It’s scary to be handed a diagnosis for a disease with little to no treatment available. I believe the cure is out there but in order to get there we have to keep raising awareness, fundraising, and fighting.
What do you want others to understand about Alzheimer’s disease/dementia who may not have experienced it first-hand?
Alzheimer’s is more than just forgetting where your keys are or a person’s name. Alzheimer’s changes everything; your personality, your taste buds, the ability to have a conversation, shower, get dressed and even recognize your own home. It can make you agitated, anxious, scared, or wander away from home.
It is nearly impossible to reason with a person with Alzheimer’s and they can get upset very easily if you try. My mom used to ask to go home (when she was already home). I could have shown her 10 examples to prove to her that she was home, but it didn’t matter, she still wanted to go home. There was nowhere I could take her that would have made her feel at home because everywhere was now unfamiliar. White lies become your best solution. I struggled with that for a long time as I didn’t want to lie to my parents. However, it preserves their peace as well as yours. Trying to prove something that you will never succeed in doing only frustrates you and the person living with Alzheimer’s.
Their short-term memory will go first, but their long-term memory usually stays intact much longer. My parents couldn’t have told you what they had for breakfast or who came to visit the day before but if you asked questions or had a conversation about their childhood or early adulthood, those memories were as clear as could be and for those brief moments things feel normal. I always tried to focus on talking to them about things they would know rather than things they didn’t.
What do you hope to accomplish through the Junior Board in the new year?
I have been on the board for 7 years but for nearly 5 years I was dealing with the disease firsthand and grieving the losses of my parents. Now I have more time to devote to advocacy, fundraising, and volunteering. I hope to take a more active role to help make this our biggest fundraising year yet, inspire others to join and fight Alzheimer’s with me and get us one step closer to finding a cure.
What would you say to someone you were inviting to Paint the Night Purple?
Paint the Night Purple is one of my favorite nights of the year. An amazing group of young professionals and our friends and family get dressed up and come out to support a cause near and dear to my heart. We will have a DJ, The Boy Band Night, food, an open bar, silent auctions, and raffles all benefiting the Alzheimer’s Association. Get dressed up, bring your friends and come out for a fun night you won’t forget!
Paint the Night Purple will happen on Friday, February 3 from 8 – 11 p.m. at Morgan MFG. Tickets are still available at ptnp23.givesmart.com