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April 27, 2021 For More Information Contact: Nancy Rainwater  VP, Communications 847.324.0373 nrainwater@alz.org Pritzker signs legislation requiring more dementia training for APS workers Chicago, IL, April 27, 2021 – Governor Pritzker signed House Bill 158, which includes a vital provision that is an initiative of the Alzheimer’s Association and requires all Adult Protective Services workers and contractors to take 2 hours of dementia training annually. Subjects covered in the training include an overview of dementia, safety risks, communication and understanding behaviors. Adult Protective Services (APS) plays a critical role on the front lines of preventing abuse, neglect, and financial exploitation of adults age 60 or older and adults age 18-59 with disabilities. Many of these adults are impacted by Alzheimer’s and related dementias. It is critical that APS caseworkers receive robust, evidence-based dementia training on a regular basis to ensure they are adequately able to serve and protect this population. “This law ensures APS workers will have the training they need to effectively serve those living with a dementia and we are grateful to the General Assembly and Governor for prioritizing and this initiative” stated Jen Belkov, Vice President of Public Policy for the Alzheimer’s Association Illinois Chapter. About the Alzheimer’s Association Illinois Chapter: The Alzheimer’s Association is the world’s leading voluntary health organization in Alzheimer’s research, care and support. Our mission is to eliminate Alzheimer’s disease through the advancement of research; to provide and enhance care and support for all affected; and to reduce the risk of dementia through the promotion of brain health. Since 1980, the Chapter has provided reliable information and care consultation; created supportive services for families; increased funding for dementia research; and influenced public policy changes. ###

Story by Richard Apple. My family history with Alzheimer’s seems to extend back centuries. I once read a diary written by John Borland, my ancestor who came to this country from Scotland in 1843 with his wife and ten children. Just before departing to this country, he went to visit his mother. John had written a description after his visit, emphasizing that she did not know him. Those words say it all. Alzheimer’s wasn’t known as a distinct disease until the 1900s, but it may well have caused her inexplicable confusion. I have witnessed Alzheimer’s produce devastating effects firsthand. Both of my grandmothers, two uncles, and my mother faced the disease. The history is very long, which comes with a mix of emotions. The long history of Alzheimer’s in my family is a legacy of joy and love mingled with pain and grief. Happy and painful feelings. My family history puts me at risk for Alzheimer’s, but it has also given me resolve to help break the chain of suffering caused by the disease. The history gives me the drive to help cure this disease. I enrolled in my first trial at Great Lakes Clinical Trials in Chicago immediately after I retired four years ago. This is my attempt to make a difference in the search for a cure. The experience was extremely positive, and I have enrolled in three more studies since I went for the first time. I have also encouraged many people to become citizen scientists like me, and it would be an incredible thing to see people join me. Even if a study you participate in does not immediately yield a cure or effective treatment, every clinical finding adds a piece to this puzzle that needs to be solved. My family experience with Alzheimer’s has been intense but unfortunately not unique. Supporting my Uncle Ralph opened my eyes to the realization of how ill-equipped our healthcare system is to care for people with dementia and the lack of resources to support their caregivers. Alzheimer’s isn’t just a family tragedy because I see it as a growing public health and economic catastrophe. According to the Alzheimer’s Association, over six million Americans have the disease currently. As the population ages, this number will more than double by 2050, potentially overwhelming the health and social service systems. There needs to be a solution to make a change. If you have a family history of dementia or concerns about your memory, you should consider volunteering for clinical research. It can give you a sense of purpose, and you may learn about your health. There is information located online to help you connect with a local research center. When I think about my mother, I obviously remember the struggle of caring for her in her final years, but I also cherish memories of the vibrant life she led. Into her late 70s, she walked five miles every single day, brimming with confidence and strength. Even with her disease, she was able to experience joy, and it was my mission to help bring her those opportunities. I learned a lot from that time. I am now trying to identify the things that bring me joy and communicate them to my family. Providing them with a plan to guide my care and support will ease their journey and maximize my opportunities for joy if I develop Alzheimer’s. A friend of mine who lost his wife to Alzheimer’s suggested that I pay careful attention to the potential early signs of the disease. Tracking these potential signs gives me a sense of control, but it also can spark my fear as I see subtle changes in my driving, attention span, and daily living. For example, I will frequently start to put things into the pantry that belong in the fridge. At this point, I can catch myself, but I worry that a day may come where I start leaving them in the pantry. Here is a list of what brings me joy: faith, community, friendships, intense trail running, biking, trying to eat well, caring for my health through regular check-ups, taking my cholesterol and blood pressure medications, enjoying time with my young grandchildren, and having dates with my wife. Exercising my brain and body with activities that give me joy will help maximize my health so that I can be as resilient as possible to delay and possibly prevent the onset of symptoms. We need to break the chain of suffering caused by Alzheimer’s.  I can’t bring back my mother, but I can do my part to find a cure by joining a clinical trial and creating a plan to help guide my family in maximizing my ability to experience joy. Learn more about Alzheimer’s and dementia trials looking for volunteers at alz.org/TrialMatch .

Story by Natalie Mietus . Merriam Webster Dictionary defines memory as “the power of reproducing or recalling what has been learned and retained from activity or experience.” When first reading this definition, one word stood out to me in particular: power . Although it may seem expendable at times, the ability to remember one’s life experiences, feelings, and thoughts is a privilege. Our way of remembering our lives is just that: ours. No two people in this world can recall the same moment in their lives the same way, offering us each an opportunity to make our lives our own original stories. The complication with stories, however, is that others must share them to stay alive. We can each make unique marks on this world, but without our voices to speak out, we are left with the perceptions of others to carry on our legacies. My grandfather lost his battle with Alzheimer’s in 2014. Writing this message today, I hope to carry on the legacy of my grandfather, Steve Mizerik, and to support the families and individuals who have been affected by Alzheimer’s in their lives. Growing up, the days my grandparents would come to visit town were my favorite times of the year. Weeks in advance, I marked my Disney-themed calendar with a bright pink marker and counted down until I could see them face-to-face. As I got older, I began to notice a change in my grandfather. It seemed as though with every visit, my grandfather was acting less and less like himself. He no longer knew all the words to our favorite Frank Sinatra songs on his record player, his favorite war stories and knock-knock jokes was reiterated more so than usual, and he consistently lost items in his home. In addition to this, I found my grandfather asking more and more questions but soon after forgetting their answers. My biggest tipoff that something was wrong was the day that my grandfather officially forgot my name. At that moment, my life felt like a movie. The way I saw it, the only reasonable explanation could be that it wasn’t really my grandfather before me but instead a paid actor who wasn’t good at his job. This was my first true encounter with Alzheimer’s and the pain that accompanied it from a loved one’s view. Although I was physically seeing my grandfather, he wasn’t the same man I grew up with. He could still make me laugh and loved his grandchildren unconditionally, but the world seemed completely foreign to him–something he often described as dark and lonely. It pains me to think about all the thoughts that must have crossed his mind when nothing around him could contribute the same familiarity and comfort that it used to. The best decision I ever made was looking at the situation as a chance for a new beginning–and an opportunity to get to know my grandfather in a way that I never had prior. Each time we saw each other, he could introduce himself to me all over again, and I did the same. From there, we could review the basics–our favorite colors, our favorite foods, or even just the things that made us smile, like sunny days and knock-knock jokes. I got to bring joy to his face when I played him his favorite music from his record player, even though he no longer remembered the words, and continuously heard him say, “Wow, this is a great song. I should listen to this more often”. Times like these made me love visiting my grandfather even more than I did as a kid–something I didn’t think could be a possibility. He got to experience life like it was the first time, which can be even more valuable sometimes than always knowing what to expect. I hope that by sharing my grandfather’s story, anyone reading this will be inspired to look at Alzheimer’s from a new perspective. It is a painful, scary, and lonely illness, but there is a bright side to it – should we accept the challenge of finding it. This part of my life was something I certainly struggled with for much of my life, and I want to be a beacon of support for anyone else who may need it. As Merriam Webster Dictionary put it, having memories is indeed power. However, not all superheroes wear capes. Memories or not, my grandfather is my superhero. As I write this today, I consider Alzheimer’s to be his superpower.

Story by Peggy Liker. I’ll never forget the day in the fall of 1987 when I received a call from a sister who lived near our mom. I had already been working as an RN for 14 years, so my blood ran cold as she told me of some very uncharacteristic behavior our mother was displaying. The woman who loved to shop would no longer go to the mall (she became very agitated and anxious). She sent checks to her grandchildren, signing them with newly poor penmanship. She loved to drive fast, having competed in drag racing when we were very young but was getting lost going to familiar places. She put things away that later she could not find. My sisters brought her up to where I was, so the cardiologist I worked for could evaluate her. He confirmed with simple tests what we feared; we then saw a neurologist, all in the name of “getting her a good check-up.” After ruling everything else out, he diagnosed her with advanced Alzheimer’s Disease at age 54. We didn’t tell her. We told her she just had normal forgetfulness. We knew that the worse she got, the less aware she would be. She was SO relieved that it wasn’t “that Alzheimer’s or something.” (Aricept was still on trial). We (her children) helped her realize her dream of going to Hawaii, then to Graceland due to her love of Elvis. She also got to go on a cruise before her symptoms worsened. It was just a few years before she had to go to a nursing home for her safety and care. She, being otherwise healthy, lived for 15 years until she was 69. But we had lost her already when she forgot who we were, so we lost her twice. She was robbed of meeting most of her grandchildren, and we were robbed of her love, presence, and her memories. Watching her deteriorate mentally and physically was so very painful for us. No one should have to experience that. Working to end Alzheimer’s is a labor of love for myself and our sibling walk team, Jean’s Genes. As my sister put it when she was told purple must be her favorite color, she said, “purple chose me.” We work in the hope of eliminating this disease forever.

Ed Daley in the local newspaper. Kevin Daley was not a runner. In fact, he hated running. But his perspective on the sport changed in 2007 when his father, Edward Daley, was diagnosed with Alzheimer’s disease. Ed loved running and carried on with the activity despite his diagnosis; he was an avid runner since the early ’80s and was slow to give it up. However, he soon become confused during his runs, which led Kevin to lace up his own running shoes. Kevin started to participate in small races with his father to help guide him. Kevin knew from that point that running provided a beautiful connection with his father. Kevin joined Team End ALZ at the Alzheimer’s Association Boston Chapter in 2011. He ran the Boston Marathon for his father and those who have experienced Alzheimer’s disease. He ended up running six marathons including Chicago, Boston, and New York. This year, Kevin joined our Chapter’s ALZ Stars team and will run the Bank of America Chicago Marathon. This will be his seventh marathon, which is very special to him: his father ran seven marathons. Kevin is looking forward to doing his seventh marathon in honor of his dad. Kevin with his father Ed after completing Boston. Kevin and his father were always very close. As the youngest in the family, Kevin spent a lot of time with his father. They had similar professions, looked alike, and had many other similarities. Kevin’s father Ed would run every morning in any weather condition. Running was important to Ed, and it is now important to Kevin. Kevin’s father passed away in 2012. Now, running helps Kevin feel connected to his father; he feels that connection whenever he crosses the finish line. Kevin will be running with team ALZ Stars in Chicago in October 2021 to honor his father. Kevin is enthusiastic about running with the Alzheimer’s Association, and helping in any other way he can to help families and individuals impacted by Alzheimer’s disease. He raises awareness and funds to support dementia research with the hope that one day fewer families will face this disease. Donate to Kevin’s ALZ Stars fundraising page and help him make a difference. To learn more about ALZ Stars and join the team, click HERE.

Ever since I was little, I have always been very interested in science. As I grew up, that interest in science transformed into a passion for the brain. One day, I watched a documentary about Alzheimer’s Disease, and I was fascinated. I began searching the web, reading literature articles, and watching videos about the disease. After learning about the devastation this disease is capable of, I wanted to help in any way I could. I decided to join a research lab at my school, which investigates the immunological component of Alzheimer’s Disease. I also began volunteering at a local dementia care center. As time progressed, these experiences validated my passion for finding a cure and ultimately inspired me to pursue medical school to become a neurologist where I will be able to research the disease and help treat those affected by it. Due to the COVID-19 pandemic, I could not work in the research lab or volunteer at the dementia care center. So, I started looking for different ways to make a difference. I had heard about the Alzheimer’s Association and the Walk to End Alzheimer’s, which led me to do research. I contacted Gina Henrickson, the manager of The Longest Day (one of the Association’s largest fundraising events), and the rest is history. I was graciously welcomed into the Association and decided to join the volunteer recruitment committee. After I got to know the other committee members, I realized most of them had someone in their family who has been affected by the disease. Although I have never experienced Alzheimer’s disease within my own family, I still felt a personal connection with their stories. It is truly inspiring to be surrounded by others that share my passion for helping those affected with dementia. Now I call on you! If you are passionate about the disease and want to make a difference, this is the opportunity you have been waiting for! Feel free to contact me if you are interested in learning more about the resources the Association offers, opportunities for volunteerism, info about The Longest Day fundraiser, or anything else! By: Rachel Frakes

To honor Elsie, who battled Alzheimer’s, her daughter Lisa Stover started Presto Real Estate. Alongside Elsie, Lisa navigated the process of transitioning a loved one, and experienced first hand the challenges that often arise in the relocation process. Lisa created a system to help families through this challenging journey, now and in the future. My story is like so many others, yet so uniquely mine. Like all diseases, you fight it at first, rejecting the diagnosis and believing it will be different for you and your family. Unlike many families, we did not wait too long before finding our mom a safer place to live. The worries of coffee pots and irons staying left on were enough incentive for us to convince her that a move was a good idea. Of course, there was resistance and accusations that we were forcing her to do something against her will. It was true .. we were. Luckily for us, her first stop to supportive living brought joy, activities, and folks to socialize with that were just like her. As we set up her new apartment with familiar pictures and items from home, she acted like a high school graduate going off to college and getting her place for the first time. We felt blessed and relieved that we didn’t have to worry anymore. This lasted 2+ years, and the disease remained status quo. Overnight, something changed. The staff and doctors were not surprised. They all told us, “this is how the disease goes.” It is unpredictable but follows a relatively predictable pattern. Here we were, in a new place. After a hospital stay and a tumultuous few days in rehab/observation, we knew she was not going back to her apartment. I slept in a chair by her bed because I was the only one she would trust. My brother stepped in for my shower and sleep breaks, but this was not a long-term plan. With no money left to afford a more aesthetically pleasing environment and a private room, skilled nursing was going to be her new home. Again, once she stabilized and we set up her half of the room, she was okay – not great. Being completely ambulatory at this point, she was in a secure unit which meant locked in, and she knew it. As the daughter of a strong-willed woman, nothing can stir more guilt than locking your mom up. There were days she would yell at me and days she did not want to see me at all. I would do her laundry every week; I would convince myself that this would preserve the color and keep her clothes looking their best. It was guilt, and I know now that it was okay. We all have to cope in our way with this thing. Elsie lived there for over six years. She received loving care from nurses and CNA’s who will forever be my angels! They did things that I couldn’t. They understood the world she lived in, and they helped me come and go with confidence that she was in good hands. It was far from perfect, and I wasn’t always pleased with the management. Life is just like that… I am not always pleased about many things. I learned so much through the years of Alzheimer’s. I learned how to accept and how to be more patient with others and myself. I learned how to be grateful for small things and that there are angels among us. On August 28, 2020, Elsie went home to be with Jesus. We lost her during the pandemic (not to COVID-19), but most certainly because of it. I believe her will left her as she could not see or hear her caregivers any longer. FaceTime was not a good replacement for our visits, and she never really connected with us again. We were again blessed that when she went on Hospice because there were no cases in her wing. We were able to be with her. The morning she left was peaceful and one of the most sacred days of my life. She held me on the day I came into this world, and I was privileged to hold her on the day she left.

Lee Thornquist is on a mission to honor his grandmother’s legacy and help support the more than five million Americans living with Alzheimer’s disease. Lee – a self-proclaimed ultra runner, adventurer and fundraiser – will be running around the perimeter of Lake Michigan from March 14 through April 18, 2021. The run will be a total of 1,100+ miles in 36 days, and Lee will run an average of 31 miles a day with no days off. His goal is to raise money for the Alzheimer’s Association Illinois Chapter in honor of his grandmother who passed away in September of 2020. Lee’s grandmother, Harriet, was diagnosed with mild cognitive impairment in 2007 when Lee was only thirteen years old. Lee noticed small changes such as full bags of food being thrown away and cleaning things that weren’t dirty. As time passed, Harriet began to forget names, and the loving personality of his grandmother began to change. Harriet passed away in September of 2020 after living with Alzheimer’s for more than 13 years. Lee emphasizes that although his grandmother was living with this devastating disease, she was still able to teach him and his family about unconditional love, courage, and the fragility of life. With more than 10 ultramarathons under his belt, Lee is definitely no stranger to the runner lifestyle. Despite having an abundance of experience with ultrarunning, Lee claims his journey around Lake Michigan is “by far his most ambitious project yet.” His run around Lake Michigan will begin on the lakefront path in Chicago and will continue north into Wisconsin and into the Upper Peninsula of Michigan. His course will then take him across the Mackinac Bridge and south through Michigan, Indiana, and finally back to the original starting point in Chicago. During the run, Lee will be living in an RV with one other person who will act as the RV driver and personal support system along the way. Lee says the RV will “act as a home, kitchen, shower and much more” throughout his journey. Lee’s fundraising goal for his run around Lake Michigan is $25,000, and every donation will benefit the Alzheimer’s Association for the advancement of Alzheimer’s care, support and research. Learn more about Lee and his Running Lake Michigan mission here . You can also follow Lee’s journey on Instagram and YouTube .

Hi my name is Dee Anna Simpson, I am 51 years old, just recently married my best friend, Mike, and one of my biggest supporters. I’m also a mother of 5 and grandmother of 4 and great grandmother of 3…So here is how I got here! When I was around 28 years old, one of my Aunts was diagnosed with Alzheimer’s. Then in April of 2009, my own mother was diagnosed with the same dreaded disease. My mother, my best friend, my go to for strength, lost her battle with it in September of the same year. So for 5 months I watched a once strong vibrant woman, slip away from me with each passing day she would lose more and more of herself to this horrible disease and she was not able to remember those around her. Growing up, my mother was the strength and backbone of our family, she was an amazing mother with a grand sense of humor, but as I watched her slowly change and become angry and frustrated with every day things. Plus, she was battling Parkinson’s as well so it did not make things any easier for her. She became a very fragile woman, and I saw she would try so hard to do things but couldn’t. It never stopped me from helping her to dress herself and bathe herself but 5 months she no longer knew anyone and was bedridden and stopped talking and eating and would not open her eyes. On September 29th, 2009 she gave up and lost her fight, but that is not the end of my story because in June of 2020, I myself was diagnosed with early onset Alzheimer’s. I never thought the strength I gained from her as she slipped away would one day help me to deal with this disease again. All to often do we forget what is truly important in our lives and since dealing with this disease I have realized that the most important thing is family and time and those moments and memories we make with them. So if my short story can some how help just one person, whether it be a caregiver, the one living with it or the people behind the scenes who provides support, education or just a shoulder to cry on then I have done my job by sharing. So now I am doing all I can to stay focused and also to help my family to understand the different stages I will eventually go through, so like my mother I will not give up this fight for myself and so many others until I absolutely have too. I am very passionate about this and will do all I can to educate and participate until I can no longer do it. Thank you all for reading this and I wish you all the best! Hugs and prayers!!! Stay strong!!! I am adding a few pictures. My Mother Judy and my father Ronnie, My new husband Mike and myself, Me with my two children my son and his wife on the right and my daughter and her partner on the left, two of my grandchildren and my smallest granddaughter…These are just some of my inspirations to keep going every day… Thank you!!! – Dee Anna Sapp

The COVID-19 pandemic threatens the health of millions in this country and around the world, but the novel coronavirus presents unique challenges for more than 5 million Americans living with Alzheimer’s and more than 16 million family members and friends serving as their caregivers. Most notably, public health strategies aimed at limiting contact with others is nearly impossible for people living with Alzheimer’s and other dementias, who rely on family caregivers and others to live their daily lives. The Alzheimer’s Association is here to help families take the necessary measures to prepare for and cope with such extraordinary circumstances. Tips for Alzheimer’s and Dementia Caregivers Foster safe hygiene habits. People living with Alzheimer’s and other dementias may forget to wash their hands or follow other precautions to ensure safe hygiene. Caregivers are encouraged to be extra vigilant in helping individuals practice safe hygiene. Monitor sudden or sustained behavior changes. People living with Alzheimer’s and other dementias may not be able to communicate if they are feeling bad or showing early symptoms of illness. Caregivers should monitor family members closely and respond quickly to any signs of distress, discomfort or increased confusion. These signs do not necessarily indicate a serious condition like COVID-19, but it’s important to determine the underlying cause. Prepare for potential changes in care and support. As public health containment strategies for COVID-19 continue, families need to anticipate that less help may be available. It’s important for families to anticipate these changes and make plans for filling gaps in caregiving. Be calm and create a nurturing environment. The current COVID-19 pandemic is creating added anxiety for everyone. Do your best to remain calm, particularly in your interactions with family members living with dementia. These individuals often take their cues from the people around them. Creating a calm environment will help them feel safe and protected. Play gatekeeper with outside caregivers and guests. Carefully monitor who is coming into the home to ensure all who enter are healthy. Be proactive in asking outside caregivers and guests about their current health status and make sure they are not experiencing any early or recent symptoms of illness. Ask residential care facilities about communication policies. To protect the health of residents, many facilities are restricting access to outside visitors. Ask the facility about alternative communication methods during the crisis, including phone calls, video chats or emails. If your family member is unable to engage in calls or video chats, ask the facility how you can connect with staff to get health updates. Tips for Engaging People with Alzheimer’s/Dementia during Quarantine Tips to help caregivers identify activities It is important to help the person living with Alzheimer’s or another dementia remain engaged. Having an open discussion around any concerns and making slight adjustments to activities can make a difference. Consider the following tips: Start by asking yourself these questions. What do they like to do? What are they able to do? And, what are they in the mood for today? Spending time with a loved one with Alzheimer’s and other dementia can remain meaningful and fun — especially if you take your cue from the person. Be prepared to adjust and modify activities. Activities may need to be adjusted or modified to adhere to stay-at-home orders. Play a game — checkers, cards or board games. Work on a jigsaw puzzle. Look at photo albums. Encourage involvement in daily life activities. Activities that help the individual feel like a valued part of the household — like setting the table — can provide a sense of success and accomplishment. Focus on individual enjoyment. A former office worker might enjoy activities that involve organizing, like putting coins in a holder, helping to assemble a mailing or making a to-do list. A former farmer or gardener may take pleasure in working in the yard. Ask for help. Ask family members and friends for help with some non-contact chores, like putting the trash out, getting the mail or mowing the lawn. Consider meal and grocery delivery services. Tips to help caregivers modify or adjust activities If you notice a person’s attention span waning or frustration level increasing, it’s likely time to end or modify the activity. Help get the activity started. Most people with dementia still have the energy and desire to do things but may lack the ability to organize, plan, initiate and successfully complete the task. You may need to show the person how to perform the activity and provide simple, easy-to-follow steps. Concentrate on the process, not the result. Does it matter if the towels are folded properly? Not really. What matters is that you were able to spend time together, and that the person feels as if he or she has done something useful. Be flexible. When the person insists that he or she doesn’t want to do something, it may be because he or she can’t do it or fears doing it. If the person insists on doing it a different way, let it happen, and change it later if necessary. Assist with difficult parts of the task. If you’re cooking, and the person can’t measure the ingredients, finish the measuring and say, “Would you please stir this for me?” Encourage self-expression. Include activities that allow the person a chance for expression. These types of activities could include painting, drawing, music or conversation. Try again later. If something is not working, it may just be the wrong time of day or the activity may be too complicated. Try again later, or adapt the activity. Tips for Supporting Alzheimer’s/Dementia Caregivers Providing help and support to caregivers can be easier than most people think. Even little acts can make a big difference. The Alzheimer’s Association offers these suggestions: Learn. Educate yourself about Alzheimer’s disease – its symptoms, its progression and the common challenges facing caregivers. The more you know, the easier it will be to find ways to help. Build a Team. Organize family and friends who want to help with caregiving. The Alzheimer’s Association offers links to several free, online care calendar resources that families can use to build their care team, share takes and coordinate helpers. Give Caregivers a Break. Make a standing appointment to give the caregiver a break. Spend time with the person with dementia and allow the caregiver a chance to run errands, go to their own doctor’s appointment, participate in a support group or engage in an activity that helps them recharge. Even one hour could make a big difference in providing the caregiver some relief. Check In. Many Alzheimer’s and dementia caregivers report feeling isolated or alone. So start the conversation – a phone call to check in, sending a note, or stopping by for a visit can make a big difference in a caregiver’s day and help them feel supported. Tackle the To-Do List. Ask for a list of errands that need to be run – such as picking up groceries or prescriptions. Offer to do yard work or other household chores. It can be hard for a caregiver to find time to complete these simple tasks that we often take for granted. Be Specific and Be Flexible. Open-ended offers of support (“call me if you need anything” or “let me know if I can help”) may be well-intended, but are often dismissed. Be specific in your offer (“I’m going to the store, what do you need?”). Continue to let the caregiver know that you are there and ready to help. Help for the Holidays. Holiday celebrations are often joyous occasions, but they can be challenging and stressful for families living with Alzheimer’s. Help caregivers around the holidays by offering to help with cooking, cleaning or gift shopping. If a caregiver has traditionally hosted family celebrations, offer your home instead. Join the Fight. Honor a person living with the disease and their caregiver by joining the fight against Alzheimer’s. You can volunteer at your local Alzheimer’s Association chapter, participate in fundraising events such as the Walk to End Alzheimer’s and The Longest Day, advocate for more research funding, or sign up to participate in a clinical study through the Alzheimer’s Association’s Trial Match. For more information, visit alz.org/help-support/caregiving/daily-care/activities. Also visit alz.org or call its 24/7 Helpline at 800.272.3900.

Nov. 29, 2018 – little did I know that morning that this day would forever change my life and my family’s life. Many years before, my grandma – my mom’s mom – was diagnosed with Alzheimer’s Disease in her early 80s. I was a young wife and mother at the time, so I was very busy with our young new lives, but I was also very aware of the care and time my mom spent with her parents. Eventually, my grandma was moved to a nursing home (unfortunately this was before memory care facilities were available), and my grandpa was moved to an assisted-living facility across the street from her. We watched and loved my dear grandma as she became more and more confused. A clear memory I have of her is sitting in her wheelchair as she just giggled while you tried to talk to her. This is also when I noticed my mom becoming very worried and consumed with the idea of herself falling victim to this horrible disease. Nov. 29, 2018 – the day this fear of hers was realized as we (my dad, myself, and my daughter, Betsy – also a nurse) sat in her neurologist’s examination room and heard him tell us that my mom definitely had the beginning of Alzheimer’s. This had been a long and difficult journey to get to this point, and although we were not completely surprised, it was breathtaking to hear the words. Later that week, I would show my mom a picture from that day of my dad and I walking in the parking lot holding onto my granddaughter’s hand, and she just cried and said, “That is the day I got ‘the news’.” This just broke my heart. Looking back, we were able to see some of the beginning signs. I don’t know if we were trying to ignore them or were just too busy to stop and realize, but I now see them: my mom leaving doors and drawers open in her kitchen when we were there for family dinners, my mom writing notes around the house as reminders about words and names, the numerous items around her house that she seemed to be collecting or hoarding (toothbrushes, toilet paper, cleaning supplies, etc.), her becoming a little more anxious about upcoming dates and events, as well as numerous other little signs. Although there were many signs, she also did a very good job at staying the same great wife, mom and grandma she had always been. I cannot imagine how hard she was working to keep things all together. After her initial diagnosis, her life and ours did not change a great deal. We were more aware of some of her difficulties, but overall, life continued to move forward. We also worked hard to try to keep “life” as “normal” as possible for everyone. I remember that Christmas, still spending Christmas day and dinner at my parents’ home with our family there, but that year we took the ingredients out to her house and my daughter and I helped Mom with all of the cooking – something we have only had to assist with in the past. I was NOT at all prepared for the changes that would occur in the next year! I am an only child, and I am fortunate that my husband and I live and work in Litchfield where my parents also live. The pain and stress this horrible disease places on a family is indescribable! One of the first BIG changes came when we made the extremely difficult decision to take my mom’s keys away from her. My mom was a very independent and “busy” woman who loved to be running around and doing things for her family and others. Taking her mode of independence away from her was devastating for all of us! It was also life-changing for myself and my dad. Something I regret as I look back was not reaching out to available resources and help. If you are going through this, please reach out and get the help that is available for you and your loved one! Last year is pretty much a blur as we rode the ups and downs of this disease. I am a teacher, and thankfully my principal and superintendent were very understanding about my circumstance. I missed over 20 days of school last year because my mom and dad needed my assistance. Finally, on March 15, the day everything closed down in Illinois, out of desperation to keep my mom safe and healthy and my dad healthy as well, we made the difficult and heart-breaking decision to move my mom into a local memory care facility. Visiting through her window and watching her confusion and sometimes anger at what is going on is the hardest thing I have ever done in my life. I have never felt as heartbroken and helpless as I do watching the woman I love, cherish and treasure diminish before my eyes without being able to do anything for her. Important lessons I have learned through this experience: We need much more support and education for Alzheimer’s patients and their families. When I retire in 4 ½ years, I will definitely work with our local memory care facility to help support families of Alzheimer’s patients. Cherish every minute you have with your loved ones. I cannot even begin to count the number of times I go to pick up my phone to call my mom about exciting moments, sad moments, or times I need to talk through something, and I can’t do that anymore. People can stand up and state they are cancer survivors – this is NOT possible with Alzheimer’s – there is no cure. We need to be diligent about finding a cure for this awful disease. Love and support those you know who have loved ones suffering from Alzheimer’s – deserting them in this time of need is NOT what they need. Yes, you may not know what to say or do, but trust me they just need you to be there for them. Having said that, I would NOT have survived last year without the love and support of so many who HAVE stayed by our sides – my wonderful husband, two loving children, an understanding and supportive son-in-law, two adorable grandchildren, amazing friends who have been the rocks I needed, and aunts and cousins who have filled in as the sisters I don’t have. There are not enough THANKS or LOVE to send you. Mom, I love you and miss you every day. What this awful disease is doing to you makes me so angry! Thank you for all you have been for me and my family – we love you! -Amy

My Fellow Caregivers, When I was asked to share my story, I readily agreed. Always-anything to support the cause. My mom has been in heaven close to 6 years, I am no longer in the role of active caregiver, so the emotional payout to me, in this already challenging year, would be nominal. Or so I thought. Though I have been writing ‘our story’ (Alzheimer’s. A window inside) for the past several years, I had put it aside-both because it was hard to go ‘back there’, and because I was rebuilding my life after our 10 year journey through Alzheimer’s. But, before starting this story here, I thought, let me read some of what has been shared by others in the past. The very first line from the very first story I picked up, my heart and eyes filled with emotion. I was ‘back there’-not physically, but emotionally. You see, our stories are the same. We really are woven together in this purple tapestry called Alzheimer’s. You don’t know me & I don’t know you, but our stories interlock. I know what you’re going through, because your story is my story. And my story is your story. As Caregivers, our common thread is LOVE, shown & given through sacrifice. Repeat that to yourself please. Say it out loud. We sign on, not knowing for how long, often unprepared for all that lies ahead (even though we think we are prepared), but knowing in our heart it is the right thing to do. It is the only right thing to do. We also know-through Faith-that no step is taken alone. We will be given the strength we need for the journey, start to finish, however long. Philippians 4:13 I can do all things through Christ who strengthens me. This was my life verse, especially through Alzheimer’s, with everything personalized…I can do— (fill in the blank) because He will provide all that I need to do in what has been asked of me. It is not my wish to go into the negatives of the disease. We all know those-we have or we are living it. The Alzheimer’s Association is your most valuable resource to assist with all of the stages. I don’t want to talk the Good, the Bad, the Ugly with regard to Dr.’s, Caregivers, stages and the like. No, I want to give you Hope. Though you may not know it now, you are in the midst of creating some of the most beautiful moments for you and your loved one. Defining moments. Moments that you’ll remember, moments that you’ll cherish, moments that will carry you. You have been positioned to help the one you love finish well, that is your sole focus. This season of life requires that you give it your all. When you think you can’t, you will. Believe me, you will. Alzheimer’s will bring out the best (and the worst) of who you are-all the while showcasing the true beauty and heart behind sacrificial love. God was with us. He walked in front, behind and alongside. He may show up in a moment that is personal only to you, but that moment will come when you need it most. He may show up through friends, or an encouraging word, a support group, or your own strengthened resolve. But He is there. In your next breath. My mother was my best friend. I honestly felt that no one in this world would ever love me more. And when the time came for her to leave, how hard would that be? How could I go on without her and that love? A gift came to me during one of her lucid moments, it came smack dab in the middle of a very hard, trying hospital stay. She looked at me full on, with intention and asked me to promise her that I would enjoy my life. It made me cry then. It makes me cry now. But that is exactly what I am doing. I know I will see her again one day in heaven. I also know that she lives in me and through me. There is nothing I do that does not cycle back to her influence and love. My mother, like all those who are living with Alzheimer’s, was very courageous. They deserve our best. They did not ask for this diagnosis. We, the Caregivers, are courageous too. We are Warriors. But one day, the battle will be won. One day we will have our cure, and all of us, will have played a part in that victory. Fellow Caregivers, stay the course.  THANK YOU for all that you do – hear this loud and clear-what  you do matters. Tuck that away in your heart for as often as you need to hear it. May God bless you and yours on your journey. We, all of us are praying for you and supporting you.  Sincerely, Peggy Martino On behalf of my mother, my best friend, my Boopa… June Martino