A Son, A Caregiver, A Marathoner: Juan Padilla Shares His Alzheimer's Story

Juan Padilla Arriaga’s mother, Eva Adriana Arriaga, was diagnosed with Alzheimer's at age 44 and passed away at age 51. She was diagnosed with a rare form of Alzheimer’s known as “autosomal dominant” which is estimated to account for less than 1 percent of Alzheimer’s cases. In 2019, Juan tested positive for the rare PSEN1 gene that runs in his family. Here, he shares how he fights back for his family and his future.

From College to Caregiving

My caregiving journey started in 2015. There was a lot of confusion, fear, unanswered questions and anger around it. 
 
This disease has been on my mom's side for at least three generations. My great-grandpa was put into an asylum, and my grandpa Fernando developed symptoms in his 40s, passing before age 50. My mom and uncle were part of my grandpa’s caregiving team alongside my grandma. 
 
Then it became my turn to become a family caregiver. I started college in 2011 and my mom was diagnosed just before I graduated. My family knew that her anxiety, panic attacks and short-term memory loss were likely a precursor to an early-onset Alzheimer’s diagnosis. She was only 40 years old when her symptoms first began. 
 
A lot of people don't know or don't experience seeing someone in their 40s losing the ability to take care of themselves. My mom forgot how to dress herself. She would shower many times in one day because she forgot she had. She would also become aggressive toward certain people if she was going backwards in her memory. It was a very stressful time; I went from living the best 4 years of my life in college to returning home to take care of my mom because she could not care for herself.

It was not until my mom started having seizures in 2017 that I got the doctors’ attention, and they helped connect us with a top neurologist in Indiana. Finally things started moving forward in the form of social security income, and qualifying for that based on her condition. But my mom was progressing faster than we were able to get all the help. 
 
Stigma is heavier when there is ignorance. Families need to understand the disease and what the future holds. Don't hide an Alzheimer’s diagnosis from the world. Go out there and share what is going on so you can get access to as many resources as soon as possible. Yes, our case is rare, with Alzheimer’s hitting our family members in middle age, but I feel that if we had understood what was happening from the get-go, we would have had access faster. 
 
Families need to stick together and work together to get help. The caregiving experience may have fallen to me and my dad, but you can get outside help; you just have to ask and work to get it. Help is out there. The Alzheimer’s Association and local social workers can help connect you with the resources that are best for you and your family's needs.  
 

Honoring My Family

This disease made me realize life is short. My parents emigrated from Guadalajara, Mexico in the 1990s. My mom was in her early 20s when she decided to come to this country, making a big sacrifice to make sure my brother and I had a better future and more opportunities than she and my father had. That meant the entire world to us. 
 
We lost my mom way too soon. Hopefully, with the research that is being done, we can prevent this from happening in our family again. 
 
We want to pay it forward and ensure that what we learned as a family is shared with our communities to help others realize what is coming, with a focus on reducing risk. Most immigrants come to the United States to work and give their kids a better life, but they have to continue to care for themselves: exercise, socialization and healthy eating are important.
 
In that vein, I ran the 2022 Chicago Marathon with the ALZ Stars fundraising team, and my family was there to cheer me on! The entire experience with the ALZ Stars team was amazing, a 10 out of 10. There were speakers at the Congress Hotel in Chicago where we gathered to keep us motivated, and we had an assigned coach. It was my first marathon, and I felt less nervous because I was part of the fundraising team. It was exciting meeting everyone involved fighting for the same cause.
 
The last 5 miles were the real test, but I felt supported by everyone around me, including my family and friends, who were positioned at different mile markers to keep me going strong with their cheers.
 

The Road to Today

Having help on this difficult journey is so important. Like a marathon, Alzheimer’s is a long, difficult road. I learned to take it one day at a time. I learned that health needed to be a priority as a caregiver — that I had to take care of myself to take care of my loved one. I learned not to contradict or correct my mom. I would come into her world instead of forcing her into my reality. It made things easier for everyone.
 
I spent seven years caring for my mom before she passed last year on Christmas Day. Caring for her is the hardest journey I hope I ever have to experience. I learned that every day is a gift. It taught me to take advantage of every moment and to give back every chance I can.

About: Juan Padilla Arriaga, 29, has an older brother, Diego. In addition to being an ALZ Star, he also participated in the 2022 Walk to End Alzheimer's - Michiana (IN) in Elkhart, Indiana, with his family. He is part of the DIAN-TU study, which is testing treatments and diagnostic approaches in people who have a 50/50 chance of inheriting a gene mutation that causes Alzheimer’s disease by middle age.