My mother was diagnosed with early-onset Alzheimer’s at age 63. She just turned 80 on July 28, 2019 and is now in the late stage of the disease. She has lived with my family for about 14 years and for the last three years she’s needed around the clock care. My husband, God bless his soul, is able to stay home and take care of my mother while I work. I could not ask for someone better to help her through each day. We plan our day around my mom not the time with my mom around our day.
The Walk to End Alzheimer’s is important to me because my mom, her sister, her brother and her mother were all diagnosed with Alzheimer’s. I am walking for them, for my sisters, for my children, my grandchildren and for me. I do not want my kids to have to go through what we’ve been going through with my mother. We need to find a cure. This disease is heartbreaking. When your mother does not know you and know how much you love her, it is awful.
I am walking in the Peoria Metro Walk to End Alzheimer’s on October 12th and I even have family members flying in from other states to walk with us. Everyone probably knows someone with Alzheimer’s or someone that knows someone with Alzheimer’s. It amazes me just mentioning the word how it will bring up conversations between total strangers that are going a similar situation. If you do not know someone who has the disease, you will sometime in your lifetime.
You have good days and bad days —PLEASE enjoy every good day, because they get farther and farther apart.
In 2010, Kerri Leo’s mother was diagnosed with Alzheimer’s disease at age 63. The family quickly abandoned them, and Kerri was left to single-handedly care for her mother. “Overnight it seemed I had to manage her finances, do all the cooking, drive her everywhere, manage her medications, and arrange care for her,” she said. From the beginning, Kerri had to make many sacrifices for her mother’s care. “All of my vacation time had to be used to take my mom to the doctors,” she said. “I gave up running marathons because training for them took me away from my mom too much. I had to quit graduate school because I couldn’t spend enough time on school work and work full-time and take care of my mom. My life really started to revolve around my mom.”
Meanwhile, Kerri’s sisters were unsupportive and uninvolved. “Both of my sisters wanted to put my mom in a nursing home as soon as she was diagnosed, but I knew that was the worst thing for my mom, so I refused to do it,” Kerri said. “My sister Kris said that there was nothing wrong with my mom, and she was just acting out for attention. She refused to accept my mom’s diagnosis and refused to have anything to do with our family when my mom was diagnosed. My sister Kim still visited for a while, but hasn’t made an attempt to see or talk to my mom since Christmas 2013.” Kerri’s relationship with her sisters is now nonexistent. Her mother’s brothers have also withdrawn themselves. A couple of them visit on occasion, but two of them cut Kerri and her mother out of their lives completely. “Alzheimer’s is a very isolating disease, which is hard on both the patient and caregiver,” Kerri said.
Luckily, Kerri found a great support system in her friends. “My friends have been amazing,” she said. “Most of them are incredibly supportive and always there for me, but it’s hard that I often have to cancel plans because something happens with my mom, or I couldn’t go out when we couldn’t get a caregiver. It’s a lot like being a single parent, only it’s not as well understood.”
In 2014, her mother’s disease starting to progress more rapidly, and consequently, the financial burden increased. “I was being called home from work on a weekly basis because of some emergency with my mom,” Kerri said. “My boss told me I needed to ‘do something, like put her in a home.’” She decided to quit her job so she could take care of her mother full time. “I didn’t work for a year, which of course did affect me financially,” Kerri said. “When I did return to working full-time, I purposefully took a job that was a step down from my previous position because I needed to make sure I could be available more for my mom.”
That same year, Kerri made the difficult decision to move her mother into an assisted living facility. “It was no longer safe for my mom to live at home,” she said. “I had to baby proof the house. I couldn’t take a shower without her wandering away. She had to be watched at all times.” Even though this was the right choice for her mother, it was still extremely hard on Kerri. “It was the hardest decision I’ve ever had to make,” she said. “I felt like a failure and I constantly wondered if I was doing what was best for my mom, or just being selfish. I felt like I was letting her down.” To get through such a difficult time, Kerri relied on the support of her friends. “They took turns ‘babysitting’ me,” she said. “Every night I had someone different to go out with, so I wouldn’t be left home alone feeling guilty. I couldn’t have survived that time without them.”
At this point in her mother’s journey, the financial burden is overwhelming. “My mom has spent her entire savings on her care,” Kerri said. “We had in-home caregivers for four years before it got too dangerous for her to continue to live at home. She’s now in a nursing home that costs about $98,000 a year just for her care. Since her diagnosis, we’ve spent over $700,000 just on her care, which doesn’t include doctor visits, medication, or hospice.”
Throughout her mother’s journey, Kerri has found support through the Alzheimer’s Association. She worked for the Association early in her career, and she feels that it helped her to be more prepared. “As soon as my mom was diagnosed, I went on the Alzheimer’s Association website and read through what steps we needed to take to make sure she had the proper legal paperwork in order,” Kerri said. “I routinely would check back on the website and look at the seven stages of Alzheimer’s disease, trying to determine where my mom was.” In addition, she found the 24/7 hotline to be helpful. “When I needed advice on how to handle certain behaviors, or needed to know how to tell when my mom needed to be in a secure facility, I called the 24/7 hotline,” she said. “I was so grateful to have that resource available. It makes a difference just to know it’s there.”
Kerri wants other caregivers to know that although Alzheimer’s is incredibly isolating and misunderstood, they are never alone. “Most people don’t know that the patient will experience behavioral changes in addition to memory lapses, which are harder to manage,” she said. “No matter what, I think it’s important for caregivers to know there are resources available to help them. They don’t have to do everything alone.”
The Bank of America Chicago Marathon is not just about ONE story – it’s thousands of stories. Read Stephen Farr’s ALZ Stars marathon runner spotlight below!
Where do you live? Right now, I live in Berrien Springs, Michigan. I am a Masters student at Andrews University studying for a Masters of Divinity with an Emphasis in Youth and Young Adult Ministry.
Is this your first marathon? This is not my first Marathon. This will be my fifth Marathon. I ran my first Marathon in Portland in 2016. I had been in a car accident only nine months before the race. My doctor told me that I would never run again. I had just completed my first ever half-marathon only three months before the accident and had already signed up to run Portland. I decided to get a second opinion. I went through physical therapy, chiropractic, massage and I ran that Marathon in three hours and 20 minutes. I ran the race wearing a shirt with my motto on it. I am the Running Man and I am running for Jesus.
What do you do when you are not training for a marathon? I am a Pastor. When I am not running marathons, I spend my time encouraging others to chase their dreams. I believe that helping others achieve their dreams is the most rewarding thing a person can ever do. I am most happy when I get to be part of helping people become the best version of themselves they have ever been.
Why are you running the Bank of America Chicago Marathon for the Alzheimer’s Association ALZ Stars team? I signed up to run for ALZ Stars with one goal in mind: I wanted to raise money to fight the disease that took my Grandfather Jack Farr’s life. I wanted to raise enough money so that I could get a chance to run this race for him and tell his story. I am not just The Running Man who is running for Jesus but in Chicago, I am also the Running Man who is “Running to Remember.” We don’t know how precious our memories are until we have to witness a loved one forget all of theirs. This October 13th, I am running the Bank of America Chicago Marathon in order to celebrate and remember a man who believed in me even when no one else did. He took me in off the streets 14 years ago when I was homeless. I am now a college graduate and going back to get my Masters Degree, all because Jack Farr took a chance on me. Thank you, grandpa. I am running this race for you.
What’s on your playlist? Is there a “go-to” song that gets you moving? I love running while listening to Lauren Daigle sing. Nothing gets my heart beating like her singing does.
Do you have great fundraising tips you can share? For me, the thing that makes my fundraiser go is taking time every single day to share my passion for ending Alzheimer’s with every person who will listen. Share your heart, your story and your passion. Passion is contagious. If you believe that you can make a difference then you will! You will inspire people to join you in the battle. I may not be able to End Alzheimer’s all on my own but I believe that together we can.
What’s your pre-race meal or snack? I love to eat a cliff bar and about a half of a banana before a race. And when the race is over, I like to eat everything in sight.
I work with a not-for-profit organization that provides research funding to advance treatments for diseases such as Alzheimer’s at three Chicago area universities. Funding discoveries to prevent and treat Alzheimer’s is important to me because I saw the negative effects the disease had on my husband’s uncle and law partner, Ross Tyrrell, and, in turn, on Ross’ dedicated wife and daughters.
Last Spring, IWCA invited me to attend one of their events. I stopped in to learn about the organization and was astounded at the warm welcome I received and about how the meeting was so well done! The event was held in a beautiful room and kicked off with a networking reception, including delicious hors d’oeuvres and wine, during which I met one amazing woman after another. Many had personal stories about how Alzheimer’s had affected their lives and how IWCA provided them with a way to connect to others who shared a similar story while raising awareness and taking action through fundraising events, education and advocacy initiatives.
Aimee Nolan, Chair, IWCA, reached out to welcome me to attend another event. I was flattered to be invited and was delighted to join a meeting focused on caregivers. The educational content combined with the fellowship of women members provided a wonderful combination. I was hooked. I wanted to become an official part of this wonderful organization.
When my family asked me what they could give me to celebrate Mother’s Day, I asked for the gift of an IWCA membership. I feel like that gift is one that continues to give. Through the IWCA membership, I am blessed to have met many remarkable women and proud to be associated with IWCA’s mission.