Living in Amy’s world as the daughter and caregiver of a parent living with Alzheimer’s

At first, my Mom started showing signs of confusion and forgetfulness; my dad wrote it off as old age and told the family we were picking on her. In time, it became more apparent that something was wrong; my Mom had Alzheimer’s. Daily routines were forgotten, showers were dreaded, and the concept of time was lost. 

My Mom could no longer remember how to prepare food, would put away groceries in random locations, and couldn’t tell us about her day. Eventually, she started walking away from home, constantly searching for “home,” even though we never believed she would be the type to wander off. We moved my Mom to Mill Creek Alzheimer’s facility. Many people were surprised – as we hid her Alzheimer’s diagnosis for the last few years. 

My Mom broke her hip, and then her personality changed. She slapped and bit the nurses; she didn’t know where she was and why people were helping her in the bathroom. She continued looking for “home,” wanting to go, forgetting she couldn’t walk. Three tips the Alzheimer’s Association shared about talking to your healthcare professionals about Memory and Cognitive concerns are finding the right doctor, being prepared, and getting educated.

According to the Alzheimer’s Association, 2023 Facts and Figures report discussing cognitive concerns with your healthcare provider can be challenging. Having these conversations with a doctor can help facilitate early detection and diagnosis, offering individuals and families important benefits, not only treatments but emotional and social benefits, access to clinical trials, and more time to plan the future. It is also important to note that some forms of cognitive decline are treatable.

My Mom, Joyce Erickson, passed away from Alzheimer’s in April 2019, days after my 38th birthday. I could no longer help, visit, feed, or sit with her. Someone suggested I join the Alzheimer’s Committee to fill my time, and I was happy to help. This will be my 4th year as Event Chair for Springfield’s Walk. 

Over the years, I’ve always tried to maintain Elite Grand Champion status by fundraising at least $2,500 for team ERICKSON. I’ve posted on Facebook, written letters, hosted dine-to-donate events, sold coupon books and produce from my garden, and even “Flocked my Friends” – placing a flock of pink plastic flamingos in their yards in exchange for a donation. Why? Because there are no survivors. There is no cure because “I don’t want my son to sit with me at an Alzheimer’s facility someday.” Alzheimer’s is more than forgetting a name or a place; it’s scared, angry, frustrated, and helpless. It is a long goodbye.

For the first time in nearly two decades, there are treatments for individuals with early stages of the disease that can slow down the progression and give them more time with their families and loved ones. You can help! We can help! Join us at the Walk to End Alzheimer’s and show your support. A few ways you can support is by donating money so the Alzheimer’s Association, organizing free seminars, running a toll-free hotline, continuing research, advocating for government grants, and pushing life-saving bills through Congress. Donate so you are part of the cure. Help end the disease that kills more than breast and prostate cancer combined. Please, because memories matter. 

Alzheimer’s Association Advocate, Abby, Shares Her Grandparent’s Story During Volunteer Week (April 16 – 22)

Grandparents are a crucial part of a young person’s life. Unfortunately for me, at the age of 22 and a year away from getting married, I lost all four of my grandparents, two of whom passed due to Alzheimer’s Disease. Along with this, my Dad, at the age of 70, has been recently diagnosed with MCI (Mild Cognitive Impairment) and a form of Lewy Body’s Disease. What has most impacted me in this fight is watching someone you’ve known your whole life, forget the core memories that you made together. 

My name is Abby Walker and I want to share my grandparents with you. In November 2017, the Monday before Thanksgiving, my Grandpa Gillespey passed away after a several year long fight with Alzheimer’s with my Grandma being his primary caretaker while both in their 80s living on their own. Some of my favorite memories with my Grandpa include spending the night at his house, calling him on the phone when I was just three years old, and having conversations with him about his time spent in the military back in the 1940s as a U.S. Merchant Marine. As his disease progressed, I frequently had to remind him of who I was and you could always find him in his recliner in the sunroom whenever my family would go visit. On the weekend before Thanksgiving of 2017, my mom sent me a text while I was at the movies stating that we were leaving as soon as possible because my Grandpa was in the hospital and would not survive much longer. A couple of days later, I sat in the room with just my Grandma and watched him take his last breath. As a high schooler, watching someone die in front of you and not being able to do anything about it really affected me and that’s when I began a deep dive in to advocating with the Alzheimer’s Association.

Five months later, my Grandma Walker passed away from Alzheimer’s. This occurred on Mother’s Day and one week before my high school graduation. The pain of her passing hit me in my core as I had always dreamed of having her at my high school graduation. I watched how hard it was for my Dad to be her medical power of attorney while maintaining a full-time job and having a family at home. Some of my favorite memories with her include riding in the basket of her bike and swimming at the pool in her trailer park in Fort Myers, Florida, having her do my hair whenever she came to visit, eating Thanksgiving and Valentine’s Day meals at her nursing home, and my favorite by far, teaching me how to people watch by sitting at the front of Walmart while Mom and Dad were shopping. 

In 2017 I participated in my first Walk to End Alzheimer’s. Now in 2023, I am going on my second year of being on the planning committee for my local walk. Throughout the years I have advocated through fundraising for the Walk and the Longest Day and attended Advocacy Day at the Illinois State Capitol. Last month I had the honor and privilege of attending the Alzheimer’s Impact Movement Advocacy Forum in Washington D.C. Along with these activities, I am the 2022 American Royal Beauties National Excellence Miss and speaking about the Alzheimer’s Association is my platform and I have had the opportunity to speak about it on national stages and in the interview room. 

I am most passionate about bringing awareness of this disease to the 18-25 year old population because it is something that affects young people or most likely will in the future. I also advocate so there can be a future where grandparents and parents are there longer and to see their grandchildren and children accomplish major life achievements. If you or a loved one are suffering from Alzheimer’s Disease or are a caretaker for someone who is, please reach out for support. We are in this fight together. No one fights alone. We are all praying for the day when there is a white flower in the garden representing the first survivor of Alzheimer’s. As a Political Science graduate student who is focusing on Public Policy and Public Administration, I hope that I can continue to speak for those who no longer have a voice. 

As the size of the U.S. population age 65 and older continues to grow, so too will the number and proportion of Americans with Alzheimer’s or other dementias; therefore, more volunteers are needed to help us achieve our vision. Thank you to all our volunteers throughout Illinois. We honor you and all you do to help us with our vision of a world without Alzheimer’s and dementia.

Families Facing Alzheimer’s Find Reason to Hope at Annual Event 

Alzheimer’s Association Reason to Hope Chair, Barry Masek, has been committed to the mission of the Alzheimer’s Association since attending the 2022 luncheon and the passing of family members from Alzheimer’s. “I’m excited to Chair the 2023 Reason to Hope luncheon. I first learned of the critical mission of the Alzheimer’s Association and how they are working to provide resources, education, and hope to families affected by Alzheimer’s and dementia…in just one hour. Knowing that the disease impacts 1 out 3 Seniors and diagnoses are now earlier.  They most likely will know someone who has the disease/dementia.  If not a family member, a friend, a friend of a friend, or someone they know at work, a client, customer, or prospect.  If they don’t know someone today, they most likely will know someone with the disease sooner than later.” Barry is one of many Alzheimer’s Association volunteers dedicating their time and talents to providing hope for all those impacted by Alzheimer’s and dementia. 

Barry shares, “It is terrible to watch a loved one (or someone you know) not know who their children or grandchildren are, not know who they are, no longer can communicate/talk anymore, don’t remember how to chew and swallow food……  It is a slow, terrible death, I wouldn’t want anyone to go through. I have embraced the mission, and will continue to participate in the mission by raising awareness and funds to help achieve the goal of a world without Alzheimer’s!” 

On Thursday, April 27 at 12 p.m., Barry Masek will join hundreds of passionate supporters in changing the path of Alzheimer’s disease at Reason to Hope. “Reason to Hope” a powerful, one-hour luncheon honoring those living with Alzheimer’s disease and their caregivers. This year’s event, held at the Union League Club of Chicago, is emceed by Ray Cortopassi (WGN-TV Evening News Anchor) and includes a program featuring testimonies from individuals facing Alzheimer’s, as well as updates on the vital work and research of the Alzheimer’s Association.

The Alzheimer’s Association is the leading voluntary health organization providing Alzheimer’s care, support, and education completely free of charge in communities across the nation. As the largest nonprofit funder of dementia research, the Alzheimer’s Association is committed to advancing cutting-edge research around the globe. The research on Alzheimer’s and dementia is staggering. The Alzheimer’s Association 2023 Alzheimer’s Disease Facts and Figures reveals that more than 6 million Americans are living with Alzheimer’s. By 2050, this number is projected to rise to nearly 13 million.

VIDEO: 2023 Alzheimer’s Disease Facts and Figures – 

How You Can Help

Families facing Alzheimer’s need us now more than ever. COVID-19 contributed to a 17% increase in Alzheimer’s and dementia deaths. When you make a gift to Reason to Hope, you are making a difference for the 230,000 people living with Alzheimer’s in Illinois and their 383,000 caregivers. 


Reason to Hope Sponsors are at the forefront of the fight to end Alzheimer’s. The Alzheimer’s Association is proud to recognize the following Gold Sponsors for making this event possible: Chicago Blackhawks Foundation, George Joseph, and Griffith Foods. Additional support is provided by Silver Sponsors: Amsive, Bank of America Ingredion, Chicago Private Wealth Group, The Clare, Daspin Aument LLP, Dykema, Flying Food Group, Grant Thornton, Innis Law Group, Pfingsten, PNC, Radford Green, Carol Prins & John Hart, Bakertilly, Levenfeld Pearlstein, LLC, Monarch Landing, and The Clare. Bronze Sponsors: Chicago Bulls – CIBC Bank – Susan G. Gallagher – Christopher and Jill Genzler – Gozdecki, Del Giudice, Americus, Farkas & Brocato LLP – Hamra Enterprises – Hearing Health Center – Mindsight – Peck Ritchey, LLC – Strategic Partnership Alliance, LTD – Sunrise Senior Living – Vista National Insurance Group, A Division of Brown and Brown of Illinois, Inc 

A brighter future is coming within reach thanks to passionate volunteers like Barry, and the impactful work of the Alzheimer’s Association.

Tammy’s Heartbreaking Journey: Sharing Her Mom’s Story with Alzheimer’s During Alzheimer’s Volunteer Week -(April 16 – April 22)

I thought I’d seen it all, but nothing prepared me for the day in February 2018 when my mom, Joan, was diagnosed with Alzheimer’s disease. It all happened on the way to a craft show when she started repeating herself, and suddenly I knew something was wrong. My dad had noticed some worrying things like her needing help remembering things and writing checks. That’s when we realized it was time to get her checked out by a doctor.

I looked at the Alzheimer’s website for information and gave my mom some cognitive skill tests at home. It was worse than I had hoped: She could no longer count money back or tell me the time. We decided to go to a neurologist, and that was when it all became official: She had Alzheimer’s disease.

The neurologist confirmed no cure was available, and that’s when it hit me in the face. I felt like my heart had dropped into my stomach. To see the look on my father’s face was the second hit.

I knew this was going to be a long and difficult journey for our family. We had a good year with my mom while she was on the medication, but it started to take a toll on my father; he was tired, run-down, and not eating well. I had my mom at home during the day to care for her, but I was working from home at this time due to COVID and wanted to give my dad a rest.

We took comfort in the fact that we were not alone on this journey. I could always rely on the Alzheimer’s website for many questions and webinars to help my mom. They often had answers for us when we felt like no one else did.

One night, I was with my mom and dad playing cards with my brother. I showered my mom, washed her hair, dressed her, and got ready to tuck her into bed.

While dressing her, she asked me, “Can you get my daughter if she is still here? I want to say good night.” At that moment, my heart broke. Here was this amazing woman, yet she could not remember that I was her daughter. I walked the short distance to the kitchen, returned to the bedroom, and said with a witty yet compassionate tone, “Hi, Mom; I hear you wanted to say good night.” She looked at me lovingly and said, “Good night. I love you.” Tears filled my eyes as I responded, “I love you too, Mom.”

She then asked me if the lady caring for her and the cleaning lady were still there because she wanted to speak with them. I said yes, and at that moment, for a few minutes, we were the same three people – daughter, cleaning lady, and caregiver.

It is horrible when they look at you, and you know they have no idea who you are. Ever since then, I have been telling everyone the same two things: First, “time is the most precious gift in life!” and second, we lose our loved ones twice.

My mother passed away in May 2021, and my father passed away due to lung cancer shortly before that. I was determined to make the most of the time left with them and to help others, so I got involved with the Alzheimer’s Association to raise awareness and funds for research.

According to the Alzheimer’s Association, 2022 Facts and Figures report, conversations with family members and health care providers outreach and educational messages may empower individuals to seek help when they become concerned about cognitive issues. 

Community-based, participatory educational campaigns are another way to reach people who may not believe their problems are serious enough to warrant a medical visit. A dialogue between individuals with cognitive concerns, their families, and their physicians is a crucial first step on a journey toward understanding the magnitude of the issue.

The report also shows the need for care, support, and research for the 6.7 million Americans with Alzheimer’s. Behind these numbers are friends, family, and loved ones, which is the reason why I fight. My hope is that no other daughter or son ever has to face such grief, sorrow, and despair again. I vow to never forget my parents, their love and dedication, and the hope I have for a brighter future.

The Alzheimer’s Association offers free local support throughout the state, including support groups, education, and the Association’s 24/7 Helpline 1-800-272-3900. This support can be a lifeline to caregivers. The Alzheimer’s Association website and the phone number were my lifelines during my difficult time. If you are dealing with Alzheimer’s disease in your family, I urge you to take advantage of these invaluable resources.

Caring for a loved one with Alzheimer’s is a long, arduous journey. I hope my story helps give you the strength and courage to make the best of this time, no matter how hard it might be. Together, with the help of the Alzheimer’s Association, we can make a difference in this fight.

To our volunteers: You strengthen, empower & inspire our communities. 💜 Your stories of love and hope remind others they are not alone and move the fight to #ENDALZ forward. During #NationalVolunteerWeek and always, we thank you for being the heart of the Alzheimer’s Association.