Alzheimer’s taught us that
love and kindness can be communicated and understood without words. My mom,
Helen, found a new purpose in life: making those around her in the memory care
home happy every day. Every time someone sees her, she is happy, smiling,
singing or giving hugs. People seek her out when they are having a bad
day. A hug from my mom still makes others feel better. Yes, there is
a purpose in a life with Alzheimer’s. My mom is still making a difference in
people’s lives despite this ugly disease.
My mom is the mother of four accomplished children who love her deeply, 11 grandchildren who call her “Nanny,” and four great-grandchildren. She married George, the love of her life in 1952. She loved books and took the lead in successfully running a fundraising campaign when her town needed a new library. She was full of energy, and her bright smile was, and still is, wonderful to be around. When she was 78 years old and in the prime of her retirement, she was diagnosed with Alzheimer’s. We were fortunate to find an incredible life care facility and got my mom moved in early enough in her diagnosis to make it a comfortable transition. She immediately made new friends and captured the hearts of her caregivers.
Early on, facing the disease was challenging. She was concerned and anxious about her failing mental capabilities. There was little we could do to boost her confidence other than assuring her that she was in a kind, gentle, and understanding environment. Today, my mom doesn’t have the ability to communicate with us. She doesn’t remember her husband or her life in a wonderful small-town community that loved her. She doesn’t know her kids by name, and she is unable to read and continue to learn. As we stayed by her side and felt incredibly helpless, we started to notice the difference she made to those around her and how her happy attitude remained solid. And we started to learn compelling things about life and love.
We learned it is the simple things that matter. I find great solace in holding my mother’s hand, having her fall asleep in my arms, walking with her, listening to her intermittent words, and being thrilled when they occasionally make sense. She has few material things around her that matter. It is the love and care of others that makes the difference. Yes, I miss my mom who I could communicate with and share life’s adventures, and yes, Alzheimer’s disease is truly dreadful. Yet we have found it comforting to know that in the middle of all of it, our mom remains happy and able to bring joy to others. And our lives are better because of what we have learned in the process.
It has been almost five years since I lost my beloved wife of 56 wonderful years to Alzheimer’s. I not only walk in her memory, but for the 5.8 million people who are living with this disease. I walk to raise funds and awareness. I walk so that future generations won’t know the pain of watching the person they love most in the world succumb to this devastating disease. A disease for which there currently is no prevention, no treatment and no cure. A disease that claims more lives annually than breast cancer and prostate cancer combined.
Eileen’s time with us was cut short thus, robbing her of a chance to see how our family has flourished as the last of our grandchildren have graduated from college, married and added other precious great-grandchildren to her legacy.
I will be walking in the Springfield Walk to End Alzheimer’s, which will be at the Southwind Park on Saturday, September 21, 2019. My involvement does not stop with merely raising money or walking. I have been a Team Captain for the past five years, I have served on the Team Retention Committee and as Walk Committee Chair. I was Walk Co-chair, in a supporting role, for the 2018 Walk and currently serve as the Co-chair for the 2019 Walk in a lead role.
I’m committed to raising awareness and funds for Alzheimer’s research, care and support. I need your support. Please make a donation, in Eileen’s memory, to help the Alzheimer’s Association advance research into methods of treatment, prevention and, ultimately, a cure. For the millions already affected by the disease, the Association offers care, education, support and resources in communities nationwide. Every donation helps, no matter how small. Together we can make a difference.
This disease affects far too many lives. One out of every three American seniors dies with Alzheimer’s or some form of dementia. I need your help so that we can continue to fund research to end this disease and provide support for the 230,000 Alzheimer’s patients in Illinois and their 588,000 caregivers.
Back in 2011 my mom, Rose, was diagnosed with Alzheimer’s. She suffered what they called mini-strokes that attributed to the disease, and she had to retire from a job she loved after 16 years. Alzheimer’s – at first – slowly took things from my mom; confidence, driving, painting, writing and more. The one thing she never let the disease take was her smile and her loving personality. My wonderful father took care of her for over four years until we had to put her into assisted care.
She soon would lose her ability to walk, talk and eat. Even though she didn’t communicate at the last stages of the disease, she still had that sparkle in her eye. We knew she was still in there and would continue to smile and want to be held. In August of 2018, this devastating disease took my mom from us and our world changed. I walk for her, I walk for everyone who lives with this disease, I walk for the care providers and I walk to educate others. The Walk to End Alzheimer’s is a way to show support for anyone impacted by Alzheimer’s and raise funding for additional advancements in finding a cure.
Even if you haven’t been impacted by this disease, I encourage you to walk. Everyone should become educated because knowing how to talk with someone with Alzheimer’s is important and makes that person feel loved. My team, “Rosie’s Riveters” will be walking in memory of my mom this year. Together, we will continue to share her story and educate others about Alzheimer’s.
When my Dad died of Alzheimer’s Disease the day before Valentine’s Day in 2001, we didn’t have a name for the disease that took away his identity. We knew that he stopped reading and doing crossword puzzles, started falling downstairs, started ordering “stuff” from the Publishers Clearinghouse mailings he used to throw away in disgust. He almost started a fire using the microwave, became belligerent instead of easy-going, was sure he saw and spoke with his parents and couldn’t be convinced otherwise with logic, had several fender benders before we took away his car keys and lost his ability to walk and to take care of himself. That is the SHORT list of changes that had occurred over a span of about ten years. We knew something was very wrong, but we didn’t know what. Once when he was randomly looking thru the many books in his house, I asked him what he was doing. He told me that he was looking for his mind. I was lucky and am grateful that he still knew who I was when he died.
When my Mom developed dementia ten years later, I was armed with lots of information courtesy of The Alzheimer’s Association. She was the one who didn’t know who I was two weeks before she died in 2013. She was worried about “her baby”, and she wasn’t talking about me. Thanks to my new information, I knew to go along with her reality instead of trying to change her mind. I reassured her that she had gotten an excellent babysitter and her baby was happily napping. On the way home in the car, I cried for the Mom whom I had lost. She never knew me again.
Dad with Alzheimer’s; Mom with dementia. Obviously I have a lot of skin in this game. It is devastating to watch a loved one disappear while they are still alive. My Dad was a research chemist with a masters degree. At the end he couldn’t even feed himself. My Mom was an R.N. who couldn’t find her way from her room to the dining room she had been going to three times a day for five years. I have seen my possible future and it is not pretty.
I learned about the Alzheimer’s Association the year that Dad died, and I have participated in the Macomb Walk to End Alzheimer’s every year since then. The 2019 Walk will be my 19th Walk. Each year I set a higher fundraising goal as I approach the age when my Dad was when he first started showing symptoms.
Alzheimer’s and other dementia diseases impact us all. It could be a friend, a parent, a sibling. It could be you. Join me in raising money to find a cure and to learn more about this devastating disease. Together, we can do this.
Tammy Joseph has had three loved ones, her grandmother, father, and father-in-law, pass away from Alzheimer’s disease. In addition, her mother is currently living with dementia and Parkinson’s. “All three of my loved ones eventually forgot who we were,” Tammy said. “Unless your family has had this happen to a loved one, it’s very difficult to understand what it’s like to have someone stop speaking to you and look through you with a blank stare because they can’t remember who you are.”
Tammy’s father was a farmer who raised horses and pigs, which was an integral part of his identity, but during his time with Alzheimer’s, he eventually couldn’t remember enough to talk about it with anyone. He would also go out and buy things for the farm even though he no longer lived there. “One day, he wrote a huge check to enter pigs into the county fair, but he didn’t have hogs to show,” Tammy said. “I tried to get him to give me the check so I could pretend to mail it, and he refused to give it to me. He actually pushed me out of the way so he could mail it. My Dad would have never treated me this way before Alzheimer’s.”
After that incident, they had to have a family meeting and take away his credit card. “Dad got so upset and started yelling at us that he worked his entire life for his money, and we had no right to take it away,” Tammy said. The family also had to take his license and truck away because it was no longer safe for him to drive. “My parents lived in a small town, so when my Dad was driving down the wrong side of the road, the police brought him home and told us that he shouldn’t be driving,” she said. “He said it was his truck and no one was going to keep him from driving it. We had to sell it so it would be out of his view.”
Tammy has vivid memories of these conversations, which are still painful for her to talk about today. “Eventually, because of his temper, we had to make the decision to medicate him so he wouldn’t hurt Mom or any of us if we didn’t do what he wanted,” she said. “What many people don’t understand is how difficult it is when you have to make decisions about ways to keep your loved one safe.”
Another difficult part for Tammy and her family was seeing her father lose his outgoing personality. He stopped talking about the farm. He stopped emailing his friends. And eventually, after having to go on medication for his temper, he barely even talked to Tammy’s mother. “Mom became very lonely because Dad was always a ‘talker,’” Tammy said.
After seeing so many of her loved ones battle Alzheimer’s, Tammy knows that it isn’t a quick disease. “In most cases, your loved one will live many years after being diagnosed, and they will need a lot of care,” she said. “This is really affecting our health care system, so in that way, this disease is affecting everyone that pays taxes.” In addition, she said that “it’s rare that I find someone who hasn’t had someone in their immediate family or a friend diagnosed with Alzheimer’s or dementia.”
Tammy’s mother is currently living with dementia, but the medication is helping for now. “I pray that she continues to know who we are,” Tammy said. “I walk in the Jacksonville Walk in hopes of raising money to fund research so that one day, my children won’t be sitting here writing their story of why they Walk to End Alzheimer’s.”
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.
