The Bank of America Chicago Marathon is not just about ONE story – it’s thousands of stories. Read Melisa Holman’s ALZ Stars marathon runner spotlight below!
Where do you live? Asheville, North Carolina
Is this your first marathon? This will be my second marathon.
What do you do when you are NOT training for a marathon? I work for The Nature Conservancy as a Donor Communications Specialist. I work to inspire donors to give to The Nature Conservancy and to help them understand how their support is helping to bring about a future where nature and people thrive.
Why are you running the Bank of America Chicago Marathon for the Alzheimer’s Association ALZ Stars team? In May 2017, I lost my dad to dementia. He struggled for years to maintain his dignity and demeanor–his very self–through this disease. I struggled to understand how I could support him.
After he died, I felt the intense void of losing him, the insidious sense that I could have done more to help him, and the tangible weight of life’s impermanence. And I felt fear at what my future might hold.
I became determined to go the extra mile to prevent a similar fate. I have accepted the reality that there is no guarantee that my brain will stay healthy through old age, but I am also buoyed by research that suggests a healthy lifestyle can help. According to the Harvard Medical School, “The most convincing evidence is that physical exercise helps prevent the development of Alzheimer’s.”
It was then that I decided to run the Chicago marathon to raise money for the Alzheimer’s Association. I needed a monumental challenge to honor Dad’s life–and to demonstrate my desire to help myself and others avoid dementia.
So, this October I will run 26.2 miles through the streets of Chicago, near where my dad (Douglas Holman) grew up. I will run to remember my incredibly supportive, kind father who went the distance for those he loved and to recognize his strength living through this terrible disease. I will run to honor my brother, Andy, who was Dad’s caretaker for more than five years and went above and beyond to keep him happy and safe. I will run to honor my personal commitment to live a healthy, full life with the time I have left.
What’s on your playlist? Is there a “go-to” song that gets you moving? I am continually adding to my running playlist—it’s already 24 hours long! But I’m also starting a 4-hour Chicago playlist with super-catchy, up-tempo songs that also have a motivating message. I think currently the song that gets me going best is “Go” by The Chemical Brothers. A close second (and obviously quite relevant) is “Marathon Runner” by Yellow Ostrich.
For Destiny, her father’s diagnosis of Alzheimer’s wasn’t a shock. Both of her grandparents and her uncle had passed away from Alzheimer’s. “My brother and I grew up knowing it was always a good chance that my father was next in line, and therefore, it’s been on our radar since I can remember,” Destiny said. “Over the years, my brother and I would fly in, check in on him and look for any signs of dementia. Roughly 10 years ago, we started to notice small signs, and thus our process began.”
In her late 20s, Destiny found herself as her father’s Power of Attorney. “As you can imagine, I grew up quickly given the responsibility and the conversations we were having,” she said. While her father was still self-aware, they worked together to update his will, organize his financial accounts, and develop a care plan. “Throughout the next few years, I served as his advocate with finding the right doctor, getting a diagnosis, observing his behaviors, making sure he was eating the right foods, cleaning the house, filling his refrigerator with food, making sure bills were paid, and checking in frequently,” she said.
However, with Destiny in Illinois and her brother in New Jersey, it was hard to keep an eye on their father in Arizona. After a few years, Destiny and her brother had growing concerns. “Little by little I noticed the house was a mess, there was moldy food in the fridge, his bathing was lacking, he walked in circles at night, and he wouldn’t know where he was,” she said. “Within 72 hours my brother and I packed up my dad’s belongings, put his house up for sale and had him on a plane to his next stage of his life.”
“We laughed, we cried and had a lot of breakdowns during that short trip, but together we got through it and got Dad to an assisted living facility where he could not be hurt or hurt someone else,” Destiny said. “As Power of Attorney, I was asked to sign him over to the facility, essentially waiving his rights, which was the hardest thing I have ever done.” At 36 years old, Destiny had made the most difficult decision of her life, but it was the safest option for her father. “That was the day he fully lost his independence and when my grieving really kicked in,” Destiny said. “I knew this would be his forever home. I had always pictured it differently, and I know he always saw himself in Arizona, retired, and living his fullest life.”
At such a young age, Destiny didn’t have any friends who understood what she was going through. To help cope, she started a blog called Conversations with my Father. “My blog first started out by capturing memories of my father’s childhood and upbringing so that I could document them before his mind was completely gone,” Destiny said. “As I continued writing, it turned into more of an outlet for me in dealing with his disease.” As an English major, Destiny found writing to be therapeutic. “Instead of holding onto the pain, it provides a release for me to get it out on paper and to share it with others,” she said. “It is part of my grieving process that gives me permission to feel sad or angry in what the disease is doing to my father and my family.”
Destiny has found numerous other ways to help herself through this journey. She learned to ask her family and friends for support, knowing she wouldn’t be able to go through this alone. “If I needed alone time to process, I made time for myself to do that,” she said. “If I needed to be around friends or family to stay occupied, I asked for that. The hardest thing was being able to ask for what I needed when I needed it, which was not natural for me.” Destiny also created one rule for herself to balance her father’s needs with her own. “When my father calls me from the facility, no matter where I am or what I am doing, I take that call,” she said. “I know one day I will stop getting those calls, and it’s important to me and for my emotional state to take them. I also know for his wellbeing, hearing my voice even for 5 minutes makes him forget his disease. That makes me smile.” Destiny also talks with her brother and the nurses regularly, and she visits as often as she can. “It’s hard being in a different state, and I get down on myself for that,” she said. “But I know I can provide him support on the phone and through my quarterly visits in other ways.”
In addition, Destiny is naturally organized and logical, which has helped her, her brother, and her father prepare for what’s ahead. “From having copies of his will and understanding his financial situation to checking out assisted living centers and figuring out how Medicare/Medicaid worked, it allowed me to plan, which gave me comfort that I had a direction as things started to shift from bad to worse with my father’s disease,” she said. Destiny also learned everything she could about the disease. “During my planning stages, the reading materials that the Alzheimer’s Association provided by calling the hotline was great. It armed me with information about the disease, and I used numerous checklists to start project planning my dad’s move.”
One of the resources that Destiny has found most helpful are support groups, although she was scared to go at first. “I was afraid I would not fit in and that I would end up sitting in the pain for the hour that I was in there,” she said. “For a while I had all intentions to go to a local support group but always ended up deciding to do something else at the last minute. I would even order the Uber and then cancel.” After a particularly bad week with her father, she decided to take a chance and go. “In an odd way, I felt more normal in there than I did in the outside world,” she said. “People could relate to what I was going through, and I didn’t feel alone anymore. I felt perfectly comfortable and understood in a room full of strangers.” Destiny found a great network of support, and they are able to learn from each other’s experiences. “It’s been a blessing,” she said.
Although Destiny has found many helpful coping mechanisms, that doesn’t mean the journey isn’t difficult. “The hardest thing for me is watching my father disappear as the man I once knew,” she said. “The sad part about this disease that is very different from others is that although your loved one is still alive, they are not fully there. My father was one of the smartest and most independent men in my life who has now transitioned into someone who can’t shave himself, who can’t bathe himself, who can’t remember his grandchildren or what state he is in.”
As Destiny continues through her journey, she wants to share the resources that have helped her with others going through similar experiences. On the home page of her blog, she wrote that in addition to being an outlet for her, “I also am hoping to encourage others to have conversations with their loved ones and to enjoy the time they have with them while they are present.” She also attends events hosted by the Alzheimer’s Association to further be involved with the cause. “Since placing my dad in an assisted living facility, I attend the local Alzheimer’s Association gala and Walk to End Alzheimer’s to give back and connect with others whose families are affected by this disease,” said Destiny. “This organization has created a community for me.”
For others in similar situations with their loved ones, Destiny has some advice to offer. She says that the disease is not always diagnosed and is often managed poorly. “You must be your loved one’s advocate at all stages of this disease and throughout their care,” she said. “Trust your gut. Make sure you get them to the right doctors that understand Alzheimer’s, ask questions to understand medication choices, understand your loved ones financial and legal obligations and rights, and personally inspect and review assisted living facilities. Never stop asking, questioning and checking in throughout the process.”
Destiny also encourages others to find the same support that has helped her so much. “Whether that’s family, friends, local support groups, a therapist, whatever works best for you, make sure you know who those people are,” she said. “They will be pivotal to your self-care both emotionally and mentally. As a caregiver we are used to taking care of others, but if you are not taking care of yourself, you are also doing a disservice to the loved one you are caring for.”
“Mom’s diagnosis of Alzheimer’s was not a surprise because her mother had it, but it was scary because we knew what the progression and end result would be,” said Mary Stallings. Mary’s mother lived for 12 years with Alzheimer’s with plenty of challenges along the way including a cancer diagnosis, pneumonia, hospice care, as well as the memory loss that is the defining symptom of Alzheimer’s. Through all of this, Mary was able to maintain a very positive mindset and find joy during every visit with her mother. “It was sad, but Mom didn’t sign up for this rodeo,” she said. “It was what she was dealt, and we would all cope with it together.”
In the beginning, Mary’s parents were living in Arizona. “I think Dad knew [her memory was lapsing], but he didn’t want to admit that something was wrong,” she said. They decided it was best to move her parents to Chicago to be near Mary and her siblings. Her parents moved into an assisted living facility, and her mother was very independent at first. “We would visit Mom and play games with her, take her out and have dinner, and enjoy our time together,” Mary said. “She loved the entertainment that would come in [to the facility] and the dances they would have. Mom was always one to enjoy a good party and dancing.”
Her mother’s ability to live independently soon started to decline, as was expected. “She was falling, she had left her electric stove on, and simple games that we played with her became a challenge,” Mary said. The assisted living community didn’t offer Medicaid subsidized beds, so they moved her to a memory care facility. The new facility had three neighborhoods, A, B, and C. She started in the C neighborhood, but eventually moved to B and then A. “She would be tested on her memory ability and we would hope that she would have all the ‘right’ answers so they wouldn’t mark her as digressing, but that was wishful thinking,” said Mary.
Her mother’s memory continued to change, but Mary always adapted. “At one point, she said that she didn’t want us to visit because we would ask her questions, and she didn’t have the words to answer them,” said Mary. “I realized I had to change my way of speaking. Instead of ‘How are you today Mom?’ I would say ‘I heard you are having a great day.’ It is a hard thing to retrain yourself to not ask questions, but things had to be on Mom’s terms. We wanted positive visits, not frustrating ones.”
“As we were preparing to take her out one night, she asked me if I was her relative—that hit me hard,” Mary said. “I knew at that point, she would not remember my name, and I had to make another adjustment. As sad as it was, I knew it was the disease and not Mom.” Mary and her family adjusted their visits accordingly. Instead of having regular conversation, they sang, recited nursery rhymes, went through old photos, and said prayers together. They were simple activities that she would be familiar with. “She still loved when the entertainers would come in,” Mary said. “She definitely loved her music.”
Although Mary was adapting to her mother’s needs, the visits were still frustrating as she watched the Alzheimer’s progress. “When I took a step back and looked at the frustrations, I realized they were more on my end, and I knew I could change my line of thinking and presenting my thoughts, and Mom couldn’t,” she said. “A positive mental attitude had to be first and foremost.” To make this change, Mary changed her perspective on her visits with her mother. “I decided instead of being frustrated, I was going to begin living in her world because she was no longer living in mine,” she said. “If we talked about family parties, and she wanted to make cookies for it, instead of telling her she couldn’t, I would ask what kind she was making knowing full well it wasn’t going to happen. There is not a need to be right nor argue.”
Still, there were difficult days as the nurses and aids told Mary all of the abilities her mother was losing. “It was like getting a negative school report on your kids at conference time,” she said. “You want to scream and tell them they are wrong, that she is fine, but in the back of your mind, you know it is true.” At one point, her mother was in the hospital, and the nurses kept asking her where her pain was and how she was feeling. “She was becoming non-verbal at that point,” said Mary. “It was frustrating telling them that she could not describe what hurt because she couldn’t speak. One by one, they would come in and ask her the same question.”
After Mary’s mother fell ill with pneumonia, she was unable to walk. “It was a very hard reality but we chose to make the best of it,” said Mary. “We asked that Mom be brought out for the entertainers even though she wouldn’t participate much. Having the music surround her was soothing for her and us.” Mary and her family found support within the other families around them. They would share memories and have meals together. “We would enjoy the time we had, and we made the best of our visits,” she said. “Every day was a gift. There are things you never realized you would do if not for the Alzheimer’s—holding Mom’s hand and praying, feeding her, stroking her face in comfort, combing her hair, wiping her face, singing to her—simple things that meant the most at that time.”
Her mother’s journey ended on Christmas Eve 2017. “How appropriate she passed away on Christmas Eve as that was her favorite holiday, and she was strong in her faith,” Mary said. “Jesus got the best birthday gift that year. The gift of Mom.” Her mother retained her upbeat personality throughout her journey. “She brought joy and happiness despite the Alzheimer’s,” Mary said. “Mom’s journey strengthened our faith, taught us patience and understanding, and taught us the true meaning of unconditional love.”
Although her mother’s journey has ended, Alzheimer’s is still a big part of Mary’s life. She volunteers as a community educator to teach people more about Alzheimer’s and share her mother’s story. Mary said, “I volunteer to help educate people on the disease, so they better understand it and are not afraid of it, and so they know that the person they love is still there but in a different way.” Education is what helped Mary through her mother’s journey, and she wants to share that with others. “I went to various Alzheimer’s presentations and conferences to educate myself,” she said. “Getting educated on the disease and talking with people who had the disease really helped.” In addition, Mary participates in the Walk to End Alzheimer’s every year. “The Alzheimer’s Association helped educate me and let me know I have a place and people to turn to when I need them,” she said. “I walk for Mom, Grandma and all others affected with Alzheimer’s in the hopes of raising enough funding to find a cure. I cry every time I walk, knowing I am not alone on this journey.”
Mary took many important lessons from her mother’s journey that she hopes will help others who have a loved one living with Alzheimer’s:
“Don’t get angry with the person affected—it is the disease talking not them.”
“Don’t abandon the one you love because you don’t like seeing them like they are. They did not chose Alzheimer’s, it chose them, and they still have the same heart, soul, and unconditional love.”
“Find support in others, and the biggest thing is remember you are not alone.”
“Do not talk ‘around’ your loved one, include them in conversations. Talk with them, not about them or at them.”
“Understand that their behavior and forgetfulness is the disease, not the person.”
“Take care of you, too. Don’t feel guilty for taking time out for you.”
“Don’t be afraid to talk about the disease. It is real, and the more you talk about it, the better you will feel.”
Mary’s last piece of advice is, “Sing, sing, and sing some more. Music is powerful and can bring much joy.” Mary’s visits with her mother were always filled with music. It was a simple way to stay connected and bring happiness to them both. “Despite the negative news, we didn’t stop our visits or the music,” Mary said. “It only made us stronger in wanting to make Mom’s days the best that they could be.”
Last month, Maureen Murphy hosted a Longest Day event in Fairbury, Illinois called “Purple Lemonade.” She said, “The color purple for Alzheimer’s awareness made me think I could color our lemonade purple to make more of a statement.” One of her coworkers proposed a bake sale to go with the lemonade, and another coworker suggested selling t-shirts. They combined their three ideas into one event and began preparing for The Longest Day.
Purple Lemonade raised just over $2,000 with donations from well over 100 people. Of the money they raised, $1880 went directly to the Alzheimer’s Association, and the remainder, which was raised from the t-shirt sales, will be donated for the Walk to End Alzheimer’s in September. “I was hoping we would have a big impact in making more people aware of Alzheimer’s and dementia—and we did!” said Maureen. “With a handful of girls helping at the event and many behind the scenes supporting us, we had an awesome day.”
Not only does Maureen host dementia fundraisers in her spare time, but she also works as a licensed practical nurse at a dementia care facility. “My motivation in dedicating so much of my life to this cause is that I am hoping someday there will be a cure for this devastating disease,” Maureen said. “I have witnessed so many family and friends that have suffered from some form of dementia. Without people like me willing to contribute love, caring, time, and money, there would be no hope for a cure.”
Maureen has worked at Fairview Haven, a skilled nursing facility, for five years. Last August, they opened Serenity Villa specifically for residents living with dementia, which is where Maureen works now as an LPN. “My favorite part of the job is interacting with my residents, learning about them and from them,” she said. “I love to hear their stories, meet their families, and learn about their histories. We are a small, family orientated facility with a family style dining arrangement. Every day when I come to work I love to smell what is being cooked for breakfast, lunch, and supper, and help our residents to eat and engage in conversation.”
Maureen believes that education is critical when caring for people with Alzheimer’s or other dementias. “The more I learn about this disease, the more I am able to help my residents, their families, myself, and other caregivers to be able to manage all aspects of this disease while caring for those afflicted with it,” she said. “The Alzheimer’s Association has played a big role in my involvement with Alzheimer’s disease through the education I have received through the care training resources and other education programs. I am learning more each day about care and support, communication, behaviors, and dealing with caregiver stress in caring for those affected by Alzheimer’s and dementia. The more I learn, the more I can and want to make a difference.”
Adam Baiers’s father and role model passed away on November 11, 2018. “I vividly recall the day I learned of my father’s diagnosis,” Adam said. “ It was May of 2008, and I was sitting on the couch when I received a call from my mother. As I hung up the phone, questions began to circulate. What does this mean? How much time do we have? There was a lot of uncertainty, but I ultimately knew things would never be the same again for our family.” In the beginning, the most difficult part was not knowing how long it would take for things to get worse.
Adam looked up to his father from an early age. His father was a successful businessman and eventually became president of a manufacturing company in Grand Rapids, Michigan. Sometimes he even let Adam sit in on his meetings. “I was probably fifteen years old and remember flying with him to Minneapolis for a lunch meeting,” Adam reminisced. “I got to see him in action. He was the best at what he did. He could talk to anyone and make them feel comfortable. And he could negotiate a business deal like no other.” Seeing his father lose this identity as the disease progressed was what Adam struggled with most.
Although Adam and his brothers would frequently travel to Grand Rapids to see their father, their mother was his primary caregiver. “Our mom was our hero,” Adam said. “The role of caregiver is a full-time job, and my mother took on that title without hesitation. She made it possible for my father to stay at home long after he should have been able to.” When his father eventually had to be moved to a memory care facility, Adam said, “She dedicated herself to him and made sure he received the dignity and respect he deserved up until the end.”
“My parents had a loving marriage and were role models in so many ways,” said Adam. “It was definitely hard to see my mother losing her husband over the years. However, as the disease progressed and he became more confused, there was a calm about him when my mother was around.” Adam’s father lived with Alzheimer’s for more than 10 years. “Like many coping with a family member with Alzheimer’s, the journey was full of unknowns,” Adam said.
From his father’s journey, Adam gained a new outlook on life: “I always had the reminder of time; what if we don’t have tomorrow, next week, next month, or next year? Over the years of living with my Dad’s diagnosis, it has made me realize how important each day is.” This realization led him down a path he never imagined.
“Six years ago, I couldn’t run a mile. I physically couldn’t do it,” said Adam. “I wouldn’t say that my father’s diagnosis with Alzheimer’s was the reason I decided to get into shape. What I would say is that his progression made me realize how important each day is.” Since then, Adam has competed in dozens of triathlons including two full-distance races (2.4 mile swim, 112 mile bike, 26.2 mile run), one of which was the Ironman Wisconsin. Recently, he completed the Grand Rapids Triathlon for which he proudly wore his father’s initials, “RAB,” on his arm. “He was able to come to the events I competed in early on, and I know he would be proud to know I’ve kept it up,” he said.
“Each journey is different, and I’m sure the experience my family had is different from what others will go through,” Adam said. “In the end, I was fortunate to have a family where everyone did what they could to support one another. It’s a journey no one should have to take on alone. While he wasn’t the person I knew during those last years, I had someone to see, someone to talk to, and I still had my father. For me, I find great peace in that nothing was left unsaid. Nothing was left undone.”
“My father’s favorite phrase was ‘Onward and Upward,’” said Adam. “He’d always tell us this when we were going through a difficult or challenging time in life. I don’t think anything could be more fitting in dealing with a loved one with Alzheimer’s.”