Claudia Amador is a volunteer support group facilitator for the Alzheimer’s Association Illinois Chapter. A support group is a regularly scheduled in-person or virtual gathering of people with Alzheimer’s disease or another dementia, family, friends or caregivers who interact around issues relating to dementia. Groups can have social, educational and/or support components and are facilitated by individuals who have received training from the Alzheimer’s Association. Find a support group near you here: Illinois Chapter Support Groups.
Claudia Amador’s connection with Alzheimer’s started with her work as a neurologist in her home country of Honduras. One day a colleague approached Claudia about starting a memory clinic in the hospital. She knew starting a memory clinic would be a good opportunity to educate herself and others, and understand memory loss. For four years she ran a memory clinic in Honduras evaluating patients with memory loss, meeting with caregivers, coordinating neurocognitive tests, and running educational seminars for the population. Through this experience, she became very familiar with Alzheimer’s and dementia and grew a passion for sharing her knowledge with others. “For that reason, it’s important to be a part of the Alzheimer’s Association because I share the same vision and mission.”
Claudia’s involvement with the Alzheimer’s Association has spread across different initiatives, allowing her to help serve the mission in many ways. She started off volunteering at the Chicago Walk to End Alzheimer’s for two years, followed by six months as a volunteer working for our 24/7 Helpline. Now Claudia serves as a support group facilitator, guiding those who are struggling to navigate the effects of Alzheimer’s and all other dementia.
Claudia values the relationships she forms with support group participants because she sees the uplifting nature of sharing experiences with others. Claudia notes that her time as a volunteer support group facilitator has shown her how many people do not have enough knowledge of the disease that drives the impetus for action. In her groups, participants have a desire to learn just as much as they do to share. The supportive, bonded nature of the groups creates a cycle of knowledge sharing and encouragement. Facilitators like Claudia are important parts of guiding such strong foundations for successful support groups.
When she’s not volunteering, Claudia enjoys spending time with her mother and son. They enjoy walks outside in the Spring and Summer, as well as good conversation over delicious meals. Her favorite movies are foreign films and comedies that she can enjoy with her family.
The health and safety of our volunteers, staff and all of our constituents are our top priority as we continue to pursue our mission. Given the evolving nature of COVID-19 and based on the guidance from the Illinois Department of Public Health and the CDC, Unforgettable Art originally planned for April 25 will be rescheduled.
Unforgettable Art is an annual event put on by the Alzheimer’s Association Illinois Chapter. A lively evening filled with creativity, artists convert blank canvases into beautiful works of art in front of your eyes. Featuring live music, appetizers and drinks, there is no shortage of entertainment making this evening truly unforgettable. The artists donate their time and talents for this event, ending with a live auction of all artwork. Proceeds benefit research, advocacy and resources for those affected by Alzheimer’s and dementia. To showcase these wonderful and dedicated creators we are featuring two Unforgettable Artist Spotlights, father-daughter duo Randy and Rhya Reed!
Randy and Rhya Reed are a father-daughter artistic duo who will be creating live work for this year’s Unforgettable Art. Randy has been with the event for all seventeen years, making him a veteran of the event. The two have crossed over many mediums in their artistic careers, including painting on wood, canvas, glass, drawing, and even tattoos.
Randy’s inspiration stemmed from watching his father draw when he was young. “Life in art started when I was a kid and would watch my dad draw horses and cars with circles. I picked up a pencil and just started creating, and drawing on everything.” Randy’s imagination was fed by his desire to create something different across mediums, a trait he passed down to his daughter Rhya.
Randy’s artwork continues to vary over the years as he draws inspiration from new and different observations. From paintings in black and white to undersea mammals with mermaids alongside them, Randy’s creative inspiration knows no limits. He has also worked in portraiture, airbrushing, caricatures, murals, and he even painted the background for Jane the Dinosaur at the Burpee Museum of Natural History in Rockford, IL. “I guess my specialty is to keep people guessing.”
Rhya’s artistic career initiated the same way her father’s did- through watching him create. She would observe as he painted or drew, every time creating something new and different. She started drawing small comics, which developed into tattoo design using markers and colored pencils. “When I was about eighteen my dad bought me my first set of brushes and canvases so I could express my creativity in a new way. I couldn’t be more thankful for having that push to continue my art.”
Randy and Rhya’s connection to Unforgettable Art emanates from their beloved Grandmother and Stepmother, Joyce Reed. Joyce was diagnosed with Alzheimer’s several years ago and the family has had to adjust to properly caring for and supporting such a beautiful and loving soul. Art has helped them to honor her- “Art has become a big part of me because it was there during dark times in my life,” says Rhya. Not only does their participation in Unforgettable Art allow them to convey their experience through creation, it also directly supports research, advocacy, and care for those affected by Alzheimer’s.
Jessica Nazario lives in St. Charles, Illinois with her husband Mark and four children- Rian, Alex, Max, and Mason. After moving around the country for Mark’s job, St. Charles finally became home. Jessica was raised in Pullman, Washington by her parents Dr. Beth Waddel and Dr. Bill Condon. Growing up, Jessica and her sister referred to their mother as “Kid Mom” due to her playful nature. She was always coming up with creative entertainment for her girls- from dance parties to Sunday Night Beauty Shop (face masks and nail painting paired with a good movie). Jessica was inspired by watching her mother conquer a PhD while having elementary aged children, and working full time as a psychologist while continuing to live up to the distinguished title of “Kid Mom”.
As a grandparent, Beth maintains the same personality and flare when spending time with her grandchildren. Beth is the master of knowing how to meet the kids where they are – both mentally and physically. As infants, she would cuddle and hold them close. When they grew into toddler age, you could find Beth lying on the ground rolling around alongside them. Once they started getting even older, she created unique clubs for each of the kids to join in on for adventures. The older grandkids titled their club “Sneaky Thieves”, while “Sneaky Ninjas” was suited for the younger ones. The goal of the clubs was to engage in their escapades without the parents knowing. For example, stealing a cake from the kitchen and escaping to the tent out back to eat it in secrecy. Once some of her grandchildren reached their teenage years, Beth downloaded Snapchat. Though it may have been to her chagrin, Beth knew it was one of the best ways to stay in communication with her grandkids.
Jessica and her sister first noted some signs of memory loss in their mother two years ago. Jessica described them as “that was weird” moments. Without much understanding behind the forgetfulness, Jessica and her sister noted the instances as being unusual but had little further explanation of what was going on. As these moments became more frequent, Beth sought medical care and was diagnosed with Mild Cognitive Impairment. Just last month, this diagnosis was advanced to Alzheimer’s disease. Jessica has since taken initiative to access all the resources and support she can get her hands on. From webinars and support programs for her father as a caregiver, to creating a Walk To End Alzheimer’s team.
Jessica’s sons have also taken matters into their own hands. Her youngest boys, Max and Mason, decided to start a fundraiser online to sell bracelets. The bracelets read “Be Strong, Be Brave” and the boys sell them to support their grandmother. “We started the fundraiser because we know people are trying to find a cure for Alzheimer’s, but need money to do it. We wanted to help, because we felt sad about Grams,” says 10-year-old Max. “I came up with the bracelet idea because I’ve seen it used for other causes. We picked purple because it’s the color for Alzheimer’s, and the quote ‘Be Strong. Be Brave.’ just came into my head.”
The boys have already raised a sizable amount of money to support Alzheimer’s care, support and research thanks to the boundless support from friends and family. “I didn’t feel like I was too young to do a fundraiser. I mean, I am only eight, but anyone can do anything,” says Mason.
Jessica, Mark and their children take on this battle with Beth’s wise words in mind. One of Beth’s favorite stories to tell Jessica growing up was about a little boy waking up on Christmas morning to horse manure under the tree in lieu of gifts. The little boy was not discouraged, instead, he began shoveling the manure exclaiming “With all this manure, there must be a pony somewhere!” With that, Jessica and her family try to live life always digging for the pony. Beth also frequently used the words “joy” and “perseverance” in day to day life, and so Jessica’s family takes on this new challenge with joyful perseverance. Getting involved with the Alzheimer’s Association is this family’s way of honoring their loving grandmother and supporting the fight to end Alzheimer’s.
The health and safety of our volunteers, staff and all of our constituents are our top priority as we continue to pursue our mission. Given the evolving nature of COVID-19 and based on the guidance from the Illinois Department of Public Health and the CDC, Unforgettable Art originally planned for April 25 will be rescheduled.
Unforgettable Art is an annual event put on by the Alzheimer’s Association Illinois Chapter. A lively evening filled with creativity, artists convert blank canvases into beautiful works of art in front of your eyes. Featuring live music, appetizers and drinks, there is no shortage of entertainment making this evening truly unforgettable. The artists donate their time and talents for this event, ending with a live auction of all artwork. Proceeds benefit research, advocacy and resources for those affected by Alzheimer’s and dementia. To showcase these wonderful and dedicated creators we are featuring our first NEW Unforgettable Artist Spotlight!
“My name is Devan and I am a self-taught artist who specializes in marker art. My art is inspired by the textures of Van Gogh, the style of Dr. Suess, and the colors of Peter Max. I combine the style of these famous artists to create a unique style of my own. I primarily use Sharpies but also have branched out to using Prisma and Copic markers too. I use the markers in a way that I have yet to see another artist do, I carefully layer and time my creating process to create one of a kind textures. I use these textures to make everything from ethereal nature scenes, beautiful women, and one of a kind cartoons.
“Void Vixen”
I have been a professional artist for 10 years. My love for markers started when I began my career as an artist. I wanted to do something different based on my favorite artist Van Gogh, so I came up with the idea of creating textures with markers. I started taking commissions at 17 years old, wrote and illustrated a children’s book when I was 20 years old (this book is still not seen by the public), and started my first online store at the age of 21. During this time I spent countless hours practicing with the markers, slowly teaching myself new textures. I also taught myself how to draw 150 different animals; everything from different species of cats, dogs, and birds to exotic animals like alligators, giraffes, and sloths.
I decided to participate in Unforgettable Art: An Affair for Alzheimer’s because I wanted to give back to the community. I decided a few years ago when I first started doing art shows to find a way to use my art to give back to the community at least once or twice a year. My family and friends are always looking out for new opportunities for me to showcase my art. One of my parents found this event and while it specifically asked for painters, I applied anyway. I have a few family members that suffer from this disease so it means a lot to me that I was accepted.
“Typical Tuesday”
While my art is my main focus I do find time to enjoy some hobbies. I like to consider myself a hippie, so I enjoy going on nature walks when the weather allows, usually I take my cat Punkin. Punkin is my best friend and has been my rock through my ups and downs of dealing with depression and anxiety. I have also been able to deal with my mental illnesses through my love for live music, I’ve seen over 50 bands/musicians, each time dealing with the crowds gets easier. I also love to hang out with my two best friends, we are always finding something fun to do, even if it’s just some good food and great conversation. I live a pretty simple life for the most part – just enjoying all the little things and making beautiful art.”
We are beyond thrilled to have Devan on board as one of our new artists this year. Find more information and images of Devan’s work below:
The health and safety of our volunteers, staff and all of our constituents are our top priority as we continue to pursue our mission. Given the evolving nature of COVID-19 and based on the guidance from the Illinois Department of Public Health and the CDC, Unforgettable Art originally planned for April 25 will be rescheduled.
Unforgettable Art is an annual event put on by the Alzheimer’s Association Illinois Chapter. A lively evening filled with creativity, artists convert blank canvases into beautiful works of art in front of your eyes. Featuring live music, appetizers and drinks, there is no shortage of entertainment making this evening truly unforgettable. The artists donate their time and talents for this event, ending with a live auction of all artwork. Proceeds benefit research, advocacy and resources for those affected by Alzheimer’s and dementia. To showcase these wonderful and dedicated creators we are featuring another Unforgettable Artist Spotlight – Nadja Schutt.
A lover of color and texture from an early age, Nadja opened her first shop in 2009. Fresh out of art school, NASchuttDesign took shape and Nadja commenced her journey of creative expression. Featuring handcrafted works of art in the form of brooches, pendants, bracelets and other wearable bead sculptures, Nadja began perfecting her craft. After several years of success in the beading trade, Nadja’s art began to diffuse across mediums. She began to paint on silk, a practice she learned from her Oma (grandmother) in Germany as a child. Her silk work featured intricate floral designs, inspired by her love for her grandmothers.
“As time progressed and the matriarchs in my family began to move into the next stages of life, the concept of home and memories began to take form in the current Haus and Window Watcher series. Brilliant colors and playful expressions are intimate takes on past and present memories”. Nadja seeks to capture the everpresent drive for exploration that she believes sticks with us from childhood with imagery of joy, playfulness, and happiness.
Nadja attributes much of her artistic influence to her late grandmother, Bonnie Schutt. A frequenter of her grandmother’s in-home craft room, Nadja discovered her love for colorful creation at a young age. Together they made scrapbooks, decorations, and painted small figurines. As she got older and became an artist, Nadja’s grandmother was her go-to helper when it came to preparing for craft shows.
The artistic assistance diminished when Bonnie began to show signs of dementia. Nadja remained a dedicated crafting partner and still visited for craft room adventures and brought her grandmother along to the craft store for mini field trips. Eventually moved into a memory care facility, Bonnie continued expressing herself through art by participating in all of the group art projects that she could. A creative and passionate soul was lost when Bonnie passed due to complications of dementia in 2017.
Later that same year, Nadja discovered Unforgettable Art and became one of our incredible and dedicated artists. “My Grandma was a very creative person, I couldn’t think of a better way to remember and honor her than by taking part in Unforgettable Art”. You can check out her work and learn more about Nadja’s art here, or visit her on Instagram @naschuttdesign.
The health and safety of our volunteers, staff and all of our constituents are our top priority as we continue to pursue our mission. Given the evolving nature of COVID-19 and based on the guidance from the Illinois Department of Public Health and the CDC, Unforgettable Art originally planned for April 25 will be rescheduled.
Unforgettable Art is an annual event put on by the Alzheimer’s Association Illinois Chapter. A lively evening filled with creativity, artists convert blank canvases into beautiful works of art in front of your eyes. Featuring live music, appetizers and drinks, there is no shortage of entertainment making this evening truly unforgettable. The artists donate their time and talents for this event, ending with a live auction of all artwork. Proceeds benefit research, advocacy and resources for those affected by Alzheimer’s and dementia. To showcase these wonderful and dedicated creators we are featuring another Unforgettable Artist Spotlight – Todd Lorenc.
Already an avid cartoonist, Todd began painting in high school. He attended the American Academy of Art in Chicago, where he received his associate’s degree in commercial art and illustration. As a freelance artist, Todd focuses on music-themed paintings as well as music itself as a form of artistic expression- on his ukulele! Todd uses Instagram to showcase his work and Youtube for all things musical. You can check out his work here.
A veteran Unforgettable Artist since its inception year, Todd has been making live art for the event dating back to 2003, as well as providing ukulele performances to open the night. He originally learned of the event through Hobby Lobby, and after little convincing decided to participate in honor of his late grandmother Emma Paluzzi Lorenc who had Alzheimer’s disease.
To see more of Todd’s work, follow him on Instagram @toddlorencukulelemusic
On February 28th and March 1st, Chicago-based professional vocal ensembles La Caccina and Constellation Men’s Ensemble combine forces to confront themes of memory, loss, and aging. A portion of the proceeds from all tickets sold will go to benefit the Alzheimer’s Association Illinois Chapter for the advancement of care, support and research for those affected by the disease. One of the co-founders of Constellation Men’s Ensemble, Ryan Townsend Strand, shares his connection to the cause.
“I’m originally from Minnetonka, MN and am a graduate of Hopkins High School. I received my Bachelor’s degree in music from California Lutheran University and my Master’s of Music degree from Northwestern University’s Bienen School of Music. I currently live in Edgewater here in Chicago. When I’m not singing, I enjoy running and being outside, experimenting with recipes in the kitchen, playing with my kitten Charlie and listening to Podcasts. My favorite vacation spot is Grand Marais, MN, a beautiful town on Lake Superior that prides itself on art, food and natural beauty. Northern Minnesota is always the place that I feel the most myself.
I’m a founding member of Constellation Men’s ensemble. In 2013, I was asked by co-founders Lennie Cottrell and Derek Boemler to join them for what then was simply getting together Saturday mornings to sing and then share a beer. The organization was incorporated as a non-profit in 2015 and I was appointed as its executive director in 2016. Since then, I’ve founded our NOVA new music series, produced over a dozen concerts, and sung each season with CME. It is a highlight of my musical career.
The inspiration for Alone With Myself comes from my experience with Alzheimer’s disease. Both of my grandparents, Jone & Charles Gedge, or Nana and Papa as I knew them, were huge supporters of me and music even from a young age. Some of my first memories of them include being asked to play piano at their house. They lived on the North Shore of Chicagoland for many years and we would often take family road trips to visit them. When they retired to Naples, Florida our visits were even more iconic with mini-golf, dinner theater, and endless games of cards. Our bond was special. I learned etiquette, respect, passion and family values. By the time my grandfather was diagnosed with dementia, I was in college in California. I began to take up writing postcards when I could, following in my Uncle Skip’s path who wrote his father, my Papa, one postcard per day for years until the day he died.
Visits were far more erratic, with his behavior often landing him in trouble with the assisted living staff. He was always a jokester, but there was an unrecognizable person making jokes at the expense of others rather than inviting people to laugh with him. My Nana began to experience innocent visions, often telling us of a little girl who would appear. Over the summers after my grandfather’s death, I often would make time to be with my Nana, but she was far more fragile, unsure of herself, and much time was spent explaining situations to her to keep her from being confused. So much of their life consisted of gifting me experiences and teaching me things that it felt like a closing of the circle to be the one giving experiences to them and explaining things to them. I’m forever grateful for my relationship with both of them before they passed, but the loss of self was never easy to swallow.
When we came together over a year ago to discuss the second collaboration between La Caccina and Constellation Men’s Ensemble, the energy was palpable (not only thanks to the coffee). I had been part of the world premiere of Rob Maggio’s The Woman Where We Are Living in 2014 with The Crossing in Philadelphia and knew that I wanted to perform the work again in Chicago. After our last collaboration with La Caccina, I knew that our combined forces would be perfect for bringing to life this complex and impassioned work. The concerts promise to be beautiful and hopeful, with powerful music at its core. Losing a loved one to Alzheimer’s or dementia is often an isolating and lonely experience. My hope for these concerts is to see people of all ages coming together in community for an experience to grieve, to pay tribute, to honor, and to process all of the many facets of memory loss. Through our ticket sales, a portion of the proceeds will be donated directly to the Alzheimer’s Association Illinois Chapter, and I would love to see us make an impactful gift thanks to our supporters.”
I married the love of my life, Robert Andrew Jordan, on July 29, 1962. He was twenty and I was seventeen. Fifty-five years later our story of love and happiness, good times and bad, ups and downs, twists and turns, from poverty to prosperity had enough guiding light that it was turned into a published book “From Suspenders to Stethoscope…the Dr. Jordan Story.” This story was released June 30, 2017, the day which was the last day of work for my husband, Robert A. Jordan, M.D., the pediatrician, a graduate from Rush Medical College,the first African American Chief Resident at Rush Presbyterian St. Luke’s Hospital, a well known and respected physician who was known for the quality of patient care he gave to thousands of children during his time in practice. He believed that no matter what one’s socioeconomic orientation may be, or ethnicity or gender or religious affiliation – everyone deserved the best of healthcare. Yet this dedicated clinician had been diagnosed with dementia.
It was in January of 2014 that I finally came out of denial and came to terms with what was going on with my husband. I shared with our five children as well as Bob’smother and sisters my fear of what was later confirmed – he had dementia. I became more observant of the changes in his behavior. He would call me from his office two or three times a day to ask how my day was going and I would share with him I was doing or had done but a few minutes later he would call again, and ask the exact same question. When I would say you just called me and asked me that, he would laugh and say, ‘“Oh I was just kidding.” He was an avid golfer and would golf at least two to three times per week with his buddies or on his off days and special occasions. However, I began to notice his buddies stopped calling to include him in their golf outings. I eventually realized it was probably because he would interrupt the game when he couldn’t find his phone or misplaced his keys, everyone would have to go on the hunt only to find that his keys were in his pocket and/or his phone in the compartment of the golf cart. He stopped being excited about our golfing together. His interest in reading the bible, which he loved to do, diminished.
We were a physician pastor team and our dialogue with one another about our passions was slowly coming to a halt. I would ask him to stop by the store on his way home from the office to get a loaf of bread, or pick salad fixings and would come with everything but. Around late 2015 his staff started calling me to ask if Dr. Jordan had come home for lunch because it was way past his lunch hour and he had not returned. He once called me to say he had gone to pick up lunch for the staff but he was confused and couldn’t find his way back to the office. He seemed scared and panicky, but I was able to direct him home using landmarks and street signs after about 30 minutes.
I was taking care of my 86 year old sister who was a double amputee, and he would ask the same questions about her condition over and over. In early 2016 I finally convinced him to let me make him an appointment to see our Primary Care Physician to be evaluated for possible memory loss- he wasn’t happy with the suggestion and went hesitantly. My husband was so crafty that he convinced our doctor that nothing was wrong with him, but rather he was preoccupied. When the doctor suggested that he could do a memory loss assessment just to rule out what we suspected, Bob refused. I can remember leaving the office in dismay, frustrated not knowing what to do.
I began to watch his behavior even more closely. His routine of getting up at 7 am, showering, getting dressed, making and drinking a cup of coffee, stopping by McDonald’s to get some oatmeal before going to the office began to change. He started sleeping later and later. His impeccable dress was a little off and it would take him forever to complete the dressing task; he was constantly misplacing his wallet or his phone or his keys. Every morning was a search for something that he had misplaced. When I located the item he would fuss and say “who put it there?”. I notice that his demeanor was changing and he would get irritated often. He started to get up earlier to get ready for work, sometimes as early as 6 am when office hours weren’t until 9 a.m, leaving him to pace back and forth until it was time to leave. He stopped calling his mother, I would have to remind him. He forgot that our daughter’s fiance had flown in from California to ask him for our daughter’s hand in marriage. They had a long wonderful conversation and he gave his blessing. When the day came that she called to say they were on their way to get married, he became angry and claimed he’d never met the man. He began to take longer and longer to come home. As things got progressively worse, my children and I started preparing for Dr. Jordan’s retirement. We found a psychiatrist who convinced him to do a memory loss test and diagnosed him with Alzheimer’s. A second opinion confirmed this diagnosis. He was placed on medication, which he initially refused to take. We reduced his hours at his office, my oldest daughter immediately pitched in by becoming the office administrator to help prepare for his retirement. He was resistant to retiring but we finally convinced him it was time to enjoy life outside of medicine, he was now 75 years old and God had given him the ability to practice 10 years beyond retirement age.
July 3, 2017 was the first day of retirement for Dr. Jordan. On that day he got up early,got dressed in his suit and tie, put on his lab jacket, and began searching high and low for his stethoscope and car keys. On that day my duties as a caregiver began. Trying to get him to understand that he no longer had to go to work was a daily struggle. He was concerned with how we were going to survive, eat, and pay bills. This question went on all day practically every day. I eventually had to go write out our income sources and put it in his wallet so that he could visually see the numbers and understand for a short period of time that we were going to be alright. We had to move from our home which was now much to big for me to handle and seemed to be a trigger for his unhappiness. Not being able to drive the car that sat in the garage made him angry, not being able to go to the office to care for the children confused him. I was becoming frustrated, angry and confused. I hadn’t experienced or know anyone suffering from this disease and had no point of reference. I cried daily. My children insisted that I connect with a support group, so I started with the support group at South Suburban Hospital in Hazelcrest, IL, I then reached out to the Alzheimer’s Association of Illinois. After having attended an Alzheimer’s Association forum at Palos Hospital in Palos, Illinois where I shared my story I was asked if I would be interested in volunteering as a caregiver speaker for the Association and I gladly did so. I also- signed up to become a participant in the Emory University Tele-Savvy Caregiver Program which is a training program for caregivers. I needed to know all there was to know about being an informed caregiver, I knew how to be a wife but now I needed to know as a wife how to be a good caregiver for my husband. I’ve learned that I’m more than a caregiver, I am a clinician for my husband.
This journey has touched my heart so deeply that I now have a need and calling to be an advocate, not just for my husband, but for all who are affected by this disease. My husband as well as all who suffer deserve to be cared for with respect, dignity, honor and a deeper kind of love. Even though my plans were to care for him at home till death would separate us, my children and I had to make the dreaded decision in October of 2019 to place Dr. Robert A. Jordan in a long term care facility. He had begun to wander off, once having to be found by the police and brought back home. That was the most frightening day of my life. Then he was becoming aggressive toward me, my daughter and nephew; he was extremely agitated and depressed. In his new community he has become very calm and more social with the other residents. I find solace in sharing what I’m learning and experiencing every day.
One key I have learned is that self-care is most important. If I’m not healthy, I can’t see to it that my husband is cared for properly. During the time I was caring for my husband at home I was anxious, tired, short-fused, crying daily and suffering sleepless nights. I needed to share my feelings with someone who wouldn’t judge or criticize how I was feeling, so my children encouraged me to see a therapist. This was the best decision I could have made because she help me to work through my feelings of fear and frustrations by focusing on self-care. I gave myself permission to enjoy my life through spiritual disciplines, outings with friends, or enjoying free time with recreational activities. I have been blessed with an awesome support team, my daughters, my church family, my Nephew, my God Son together with his daughter and Dr Jordan’s colleagues who visit him often. My two children who live out of state come to surprise their Dad and I as often as they can, but with today’s technology we FaceTime them when we visit.
This support team allows me the flexibility to take trips to see my children and grandchildren who live out of state or to just do a getaway! I’m thankful for my support groups, the friends who have not abandoned us, my children who are the best, my colleagues, Bob’s colleagues, Bob’s agency caregiver, who still visits him, my church family and the support goes on and on. The vows we took 57 years ago have even more meaning to me now, “for better or worse, for richer or poorer, in sickness and in health we’ll be one till death parts us!”
My Dad was a hard-working and career-driven man for the majority of his life. Even though he had a successful career, we would spend every weekend together when I was younger exploring the City of Chicago and trying different ethnic foods and exploring the many diverse neighborhoods. Every weekend was an adventure for us. One of our favorite things to do was eat Chinese take out, and go bowling every New Year’s Eve. I will always remember his patience and kind way of living, and the true joy and laughter he shared when we were just doing the simplest of things together. He was a wonderful father, and we loved each other very much. Through the best and the worst of times, we stuck together finding comfort, joy, and encouragement in each other’s love. I will also always remember his strength and perseverance, and how he held our family together through both trying and joyous times.
Before my father’s diagnosis, I had recently moved out on my own and was living with two girlfriends in the city. I was ready to start my life on my terms, I had just accepted a management position with my company and had also recently met the man who would later become my husband. I was thinking a lot about my professional goals, and personal life goals at the time and working really hard to build a life I could be proud of and call my own. My time and energy were devoted almost entirely to making this happen.
On Easter one year, after I had moved out on my own, I invited my parents over to my apartment to celebrate the holiday. My dad got lost on the way to a place he had driven all his life. I knew then that something was not right, but he was resistant to getting medical attention at that time. Later that same year, my parents needed to move. Before we could get my parents safely into their new apartment, my father drove off and was missing for several days. It was absolutely terrifying for everyone involved, but he was safely found and we were able to slowly start to get them into a better situation. This really marked the start of the hardest period of my life, and the most transformative.
There was a period of transition in our relationship that was very difficult, my dad was so resistant to seeing a doctor in the beginning, it was hard to understand what was actually going on with him. So many things were frustrating and terrifying. After he agreed to go to a neurologist, and I was able to go with him and become involved in his medical care, a lot changed for us because we knew what was actually happening. Our relationship returned in some ways to how it had been- filled with love, and yet it was very different in others because I understood what I needed to do to connect to him. I was able to put my frustrations aside and be there for him. I became in some ways what my father had always been for me, a protector and gentle guiding hand trying to keep him safe and let him know how much he was loved.
Becoming a caregiver was the biggest learning curve for me, as my father was a strong man who was used to doing things his way, and in the beginning, it was hard for him to accept that his diagnosis of Alzheimer’s was real. It was a crash course in caregiving, starting in major crisis mode, and eventually becoming more manageable as I found strength within myself and support through our community.
I think it was because of our special and life long bond that I was able to meet my father with love, even in the most challenging of times. Love motivated me to adjust my thinking and communication with him and to see him for who he always had been to me, and who he was inside. I never lost my loving father, even as his neurocognitive functioning and mobility declined. I saw very clearly who he was through his genuine smile and expression of emotion. I learned to listen and to see him on a deeper level, and I always found him there, truly.
I’m very grateful I found the Alzheimer’s Association when I did. After my dad’s diagnosis, I attended a care navigation meeting by myself, because my father refused to go. It was the first time someone was able to relate to me about my situation. I was 31 at the time, and my peers had no idea what I was going through or how to help. I was able to talk honestly about my situation with someone who understood what I was going through. They offered ideas, resources, and support for caregivers. It opened my eyes to the fact that there are resources available, you have to be willing to look for them, but they are out there. It also reminded me that I needed to take care of myself in order to be able to take care of my dad.
Three months before my father’s death, we moved him into an assisted living facility. He was entering the later stages of the disease at this point. However, his death was actually very unexpected, leaving our whole family shocked. One week before he passed away, I was able to visit and spend some time with him. We talked a lot about the past and the future. He knew I was applying to graduate school and he encouraged me. We told each other how much we loved one another, we didn’t know it would be the last time. I am so grateful that we had that chance, and what a comfort it has been to know that he knew how much he was loved. I have no regrets, because I really did try to do the best I could, and I know my father knew that. In some ways, we feel his passing was a blessing and that he did not have to go farther into the cruel grips of the disease. I think we find peace in that.
Alzheimer’s is a cruel and unforgiving disease that steals from those living with it. I have anger, I have hurt, it took from me someone who meant the world to me, and I miss my father every day.
I wanted to share my story because I think it could help someone else. Meeting someone who understood what I was going through meant more than I can express. As my life goes on, I hope that I can be that person for someone else, maybe many others. I hope to stay involved with the Alzheimer’s Association, and maybe even work with them one day using my skills as an art therapist and licensed counselor. As my father always said, “Life is not a sprint, it’s a marathon”. And I keep him with me as I run it.
A native of Chicago, Illinois, Paul Bernstein built his legacy as an attorney. A graduate of DePaul Law school, Paul met his wife Dolores working in a firm where she was hired as a clerk. Before long, they fell in love and got married, blending their families of Dolores’ four children and Paul’s three, a second marriage for both. The children took to Dolores immediately, as did most people, according to Paul. “Dolores was a natural when it came to everyone she ever met, always taking a wonderful liking to her. I enjoyed making new friends with her even though those friends were much more likely to remember her name and not mine!” Paul was proud of the strength of their marriage, and it stood the test of time as they developed a life together in downtown Chicago. Unexpectedly, Dolores and Paul took in one of their grandchildren when she was around seven years old. Raising and caring for her for upwards of nine years, Paul and Dolores developed their own little family with their granddaughter. Dolores’ passion for dancing, playing piano, and violin was contagious and eventually rubbed off. “Dolores’ love of dancing caught on with our granddaughter, and we went on to live a great life and raise a super grandchild!”
Paul and Dolores’ marriage was full of love and life, improving every day even when it felt as though it couldn’t get any better. They both remained in good health while they raised their granddaughter, allowing them to enjoy all the experiences of life together as she grew up. As avid lovers of travel, they spent any free time they had seeing the world together. “Our life before the diagnosis was great and got greater with every day of our life together. This was a second marriage for both of us and we lived each day to the maximum.”
After 45 beautiful years together, Dolores was diagnosed with a rare form of dementia for which there is no cure. As her disease progressed, Paul terminated 98% of his law practice to become a 24/7 caregiver for his loving wife. A committed and adamant caretaker, Paul sometimes slept on the floor of their apartment in front of the door to prevent Dolores’ wandering out in the middle of the night. There were easy days and more difficult days, but Paul’s love and commitment to the love of his life never wavered in the face of adversity. “I cannot say I enjoyed every part of it, but it never gave me a reason to give up or not show the love of my life, that through the good and the not so good, how much I owed her for our loving lives together- and so whatever it took, I did!”
After two years of 24/7 care taking, Dolores and Paul were given a prognosis of about six months. Though it ended up being seven months, Paul appreciated the honesty and directness of the neurologist regarding the projection. “Honesty is the best policy. Undertaking this kind of responsibility takes honesty, sincerity, and willingness to try.” Paul remained by Dolores’ side until the very end. After 47 years of joy and happiness, Paul said goodbye to his loving wife. Though it was a difficult and sometimes painful end, he has no regrets about how he handled it. Taking time off work to focus on Dolores’ needs, making her comfortable and happy, was a commitment Paul stuck to with steadfastness. “I just cannot think about any life other than asking God that when I go, I end up in the heaven that Dolores is in, and that we live happily ever after… knowing we had a fantastic life together and would enjoy even more further on.” Though dementia is a powerful disease to battle, Paul’s commitment to his wife was unwavering and it is stories like these that solidify the Alzheimer’s Association’s pledge to find a cure.
