Solstice Champion hosts golf fundraiser to honor wife

Written by Carmen Molinaro

Alzheimer’s disease has affected me in the most life-altering way possible. Alzheimers took away my best friend and life partner of over 35 years: my wife, Susan. I had to watch as it took simple physical coordination away from a once world-class marathon runner. It took my future retirement plans and threw them out the window. The disease took my children’s mother and best friend; it took away a friend to many people; and it took a wonderful human from this earth. 

The saddest thing to deal with was watching the disease progress without being able to do anything about it. It felt like we lost her twice. Susan first became a different person than we all knew, and then physically passed. The single and only positive way Alzheimers has affected my life is that I now have a much greater appreciation of life, my family and my friends. I have always said “I love you” to people, but I find myself saying it more often. Don’t wait. Say it to those that mean so much to you.

We found tremendous support from Susan Frick and the Without Warning support group. Those get-togethers were so good for both my wife and myself. As a caregiver it was comforting to know I wasn’t alone with my questions, confusion, exhaustion and concern about the care we were all trying to give our loved ones. The bonding that took place between caregivers was swift, strong and comforting. We found others in similar situations that could offer advice and would understand our pain, our fears, and our frustration. 

An example of the bonds we created took place around Christmas. I was in my kitchen in Glen Ellyn having some melancholy moments about dealing with the holiday and trying to make sure my family stayed upbeat as it would mark one year since my wife’s passing. I got a buzz that someone was at the door, so I went down to the entry and there was a gentleman, Tom, from the Without Warning support group. He was there with a box of cookies and a hug just to let me know someone was thinking about me. I didn’t get a chance to tell him, but that one simple act carried me through the holiday with a smile in my heart. Don’t try to deal with Alzheimers alone. Get in a support group, go to therapy and lean on family and friends.

I started a fundraiser with The Longest Day in honor of Susan. I organized a golf outing–which seemed like a logical thing for me as I was retired from the golf business. My original goal was to have about 100 players and try to raise about $10,000. As things got into motion I quickly realized I had many more friends and supporters in my life! First, I got a big boost from the golf club where I work part-time in the summer, Boulder Ridge Country Club. Thanks to previous owners, the Plote Family, and the current owners, The Heritage Golf Group, they afforded me a generous discount on the complete package of golf, lunch and dinner. The fantastic staff at Boulder Ridge gave me so much help and support. I cannot imagine the event running as smoothly as it did without them at my side. Many of my fellow golf professionals donated gift certificates for rounds of golf that we auctioned off. 

Many friends from our past and present showed up to participate, sponsor, donate or help with registration and setup at the event. My fellow Rotarians from Buffalo Grove played and donated to the fundraiser. One super generous Rotarians case donated all the signs, banners and bag tags for the day’s events. Former employees of mine came from all over. Some who had worked for me during their high school and college days flew in for the event, some who worked with me up until my retirement showed support. The members of Boulder Ridge Country Club were and continue to be such great friends–not just during the event, but in the years preceding the event when they offered their friendship, support and love. Needles to say I had my family and three of my best friends urging me on and holding me up when I would wobble a bit. When it was all said and done my event had 186 golfers and nearly 200 for dinner. The final amount raised was over $32,000. This year’s event takes place on Monday, August 22, 2022 and my goal is to top that amount.

One of my all time favorite movies is Shawshank Redemption. One of my favorites lines is, “You got to get busy living or get busy dying.” In dealing with the loss of Susan, the idea of “get busy dying” would have been to sit and feel sorry for myself, my family and Susan–to sit in my misery without doing anything. That did not seem like an option for me nor one that would make Susan or my sons proud of. I chose to “get busy living” by helping raise awareness about Alzheimer’s disease and raising funds for Alzheimer’s research so that hopefully the next generation doesn’t have to deal with this horrible disease. As the population continues to live longer, Alzheimer’s unchecked will start affecting more and more of us. If we put people on the moon and bring them back, we can do this: we can end Alzheimer’s in our lifetime. More awareness means more funds raised, and more funds raised means hope for the future.

The thing I would like people to understand about Alzheimer’s disease is that it can happen to anyone. My wife Susan had no family history of Alzheimer’s. She exercised every day, she ate healthy, stayed mentally active and could have been the poster child for someone least likely to be afflicted, especially at the age of 54. It can happen to anyone and that is why it is so important to raise awareness. If it does happen to someone in your care, please do not face it alone. Join a support group, reach out to family and friends and know that you are not all by yourself. Sometimes people are a little hesitant to reach out to you first because they don’t know what to say or do. If you reach out to people first you will be amazed how much just having someone to talk to can help. I was always fortunate to have friends I could count on, but the depth and sincerity of those friendships amazed me and certainly carried me though those most difficult days.

Caregiver finds community, lends support through women’s group

“I believe that hope and action are contagious,” shares Illinois Women Conquer ALZ (IWCA) member Patricia McClure Chessier. Patricia served as Programs Co-Chair on the IWCA Steering Committee and now participates in events such as Walk to End Alzheimer’s and Power of Purple. She wrote two books providing caregivers with resources and tools for better communication. Patricia stays involved with the Alzheimer’s Association by educating and fundraising in honor of her mother.

“My mother was the ‘rock’ of our family,” shares Patricia. Her mother lived with Alzheimer’s and eventually passed away due to complications from the disease. “It had a great impact on our family…I was the caregiver for my mother, along with my husband Eric who helped, prior to her needing a higher level of care when the disease progressed.”

Patricia’s mother attended an Adult Daycare Program while Patricia built her professional career. “I was able to take my mother to the daycare during the day while my husband and I went to work. The program was great because it gave her a routine, she remained active and was able to socially engage.

“I joined IWCA because I wanted to be a part of a group of women who had similar experiences.” She also likes the fact that the women within the group are a great support and resource to each other.

“During the time I was my mother’s caregiver, IWCA didn’t exist,” says Patricia. “However, I am confident in saying the activities IWCA provides are priceless. The IWCA Programs committee brings in speakers and panels who are very knowledgeable about Alzheimer’s, caregiving and how to handle legal matters.

Patricia was the special guest at one such IWCA event. She discussed her memoir Losing a Hero to Alzheimer’s: the Story of Pearl at an intimate author event. In her book, she covers her own experience as a caregiver for her mother and common warning signs of the disease. Patricia wrote a second book, A Caregiver’s Guide for Alzheimer’s and Dementia, where she gives readers nine key principles on how to be effective caregivers by avoiding power struggles, living in the moment and looking at behaviors as a form of communication. A major theme in both of Patricia’s books is that “there is life after the diagnosis.”

“I also enjoy the social activities [with IWCA] because sometimes you need to do ‘fun’ things to give yourself a mental break when you’re a caregiver,” says Patricia. “The women in IWCA know how to have clean fun and the social event benefits the fight against Alzheimer’s.”

Patricia hopes to continue sharing her story to give others hope. Through IWCA, she plans to meet new people and participate in activities that will be fun and educational. She encourages people to get involved, to bring their networks to an Alzheimer’s Association event or sponsor IWCA’s signature fundraiser Power of Purple this June.

Sign up for Illinois Women Conquer ALZ to join Patricia in the fight against Alzheimer’s disease. Nominations are also open for the 2022 Family Caregiver Award, which will be given at Power of Purple on June 12, 2022.

Why I Walk…Margie’s Story

Margie OQuinn has been involved with the Chicago Walk to End Alzheimer’s for eight years. Both of her parents have lived with dementia, and she lost several friends to the disease. She participates in her local Walk event year after year in pursuit of a cure.

“My Mom is in her 12th year battling Alzheimer’s,” shares Margie. “My Dad had a form of dementia as well. It’s not easy to watch this disease slowly take away functions of the brain that allowed your loved one to live independently.”

According to Margie, supporting Walk to End Alzheimer’s “allows me to walk with others who believe as I do.” She notes that dementia affects many people, and that raising funds and awareness for Alzheimer’s disease enables research—to find a cure and slow disease progression.

“This disease affects us all in some way,” says Margie. Through fundraising initiatives like Walk to End Alzheimer’s, the Alzheimer’s Association is able to provide a 24/7 Helpline (800.272.2900) and offer continuous support to all who are affected by this disease.

Margie shares that it is an honor to care for both of her parents through their journeys with dementia. “You have to have patience in caring for your loved one,” she says. “They won’t be the person you knew, but they are still inside…Give them your love and time.”

Margie believes everyone can play a part in the fight against Alzheimer’s disease. She hopes to deepen her involvement with the Alzheimer’s Association, and has a message for anyone considering joining the fight to end the disease: “Get involved, we all need you.”  

Find your local Walk to End Alzheimer’s to join Margie in the fight to #ENDALZ.

Contributor: Amanda Wisinger, Alzheimer’s Association Volunteer

Why I Walk…Laura’s Story

A lot has changed for Laura’s mother since her Alzheimer’s disease diagnosis, but one thing that hasn’t changed is her love of singing. In fact, both her mother and grandmother used music as a way to connect to their family during their struggles with Alzheimer’s disease. “Both of them loved singing, so that is one thing I did with my grandmother that I still do with my mom,” says Laura. “She even sings harmony sometimes.”

Since Laura’s family has been greatly impacted by this disease, Laura has participated in the Walk to End Alzheimer’s for the past three years. She walks to demonstrate how meaningful it is to care for her mother. “I have been blown away with how generous my friends have been to support us,” Laura shared. She was surprised by how many of her friends also have family members who are impacted by dementia.  

People living with Alzheimer’s and dementia experience a variety of symptoms, and the degree to which a person’s life is affected can be severe. Such is the case with Laura’s mother. Laura saw her mom’s ability to care for herself gradually decline to the point that it felt like a burden on her dad, who had been her mom’s best friend for 70 years. It was very hard at first when they had to change their living arrangements so that Laura’s mom could receive the skilled nursing care she needed. But as her mom’s needs continue to increase, Laura saw it is a blessing that both her parents were happy in their new environments. “Dad read Mom poetry and sang to her over an Alexa device during the pandemic and now he visits every evening.” Laura realizes the day may come when her mother is no longer able to speak, but she is hopeful that she will continue singing even beyond that day.

Laura points out that 1 in 3 people have cognitive issues as they age, so many people and their loved ones will be affected by Alzheimer’s or dementia. “If it’s not you personally, it will be a family member,” says Laura. “If it’s not a family member, it will be a neighbor, a congregation member, or a friend.”

She believes that if communities can understand the frequent impact Alzheimer’s disease has on people’s lives, they can provide better support and compassion for those with the disease and their families. “The work that the Alzheimer’s Association does is critical for finding pharmaceutical solutions that will forestall cognitive decline as well as reducing the stigma associated with Alzheimer’s.” Her participation in Walk to End Alzheimer’s is one way to help realize that goal.

In addition to the Walk to End Alzheimer’s, Laura has participated in the Reason to Hope luncheon which benefits the work of the Alzheimer’s Association.  The annual one-hour event gives attendees a chance to learn about the work the Alzheimer’s Association does, including the support it provides to families like Laura’s. It also highlights some of the latest advances in research related to Alzheimer’s disease. 

To find out more about the Reason to Hope Luncheon, please click here.

To participate in the Walk to End Alzheimer’s and get more details about creating or joining a team please click here.

Contributor: Ellen Grover, Alzheimer’s Association Volunteer

Advocating for dementia resources for all Illinoisans

Ryne and his mother holding hands.

“This picture is very important to me and captures a very special moment,” confides Volunteer Advocate Ryne Hunt. Up until now, the only person who had seen it was his wife. The photo features Ryne and his mother grasping hands. His mother lived with dementia for seven years. The picture was taken the first day Ryne visited her care facility after roughly five months of separation due to visitation restrictions. That was one of the final days when Ryne was able to hold his mother’s hand: she passed away mere days after the snapshot was taken.

Ryne joined the Alzheimer’s Association Illinois Chapter policy efforts as a Volunteer Advocate two years ago. Ryne’s mother was diagnosed with dementia at age 59 and her journey with the disease lasted seven years. “At such a young age, mom was still very much physically strong,” he shares. “Alongside my dad and brother, we all three did what we could for her and tried to navigate the challenges the disease brought.

“More than anything, I want people to know that Alzheimer’s doesn’t just affect the one with the disease but the entire family. The best way I can describe it is it’s like you have to deal with losing your loved one repeatedly. They may be ok or better one day and the next day or even hour they have no idea who you are or where they are.”

Ryne, his brother and their mother.

Ryne, his brother and his father shared the caregiving responsibilities. Watching his mother’s symptoms progress took an emotional toll on all of them. “We knew through it all mom was not the mom or the wife we all knew our entire lives,” says Ryne. “We all played our part and, in the end, when mom left us, I think we all looked back and at each other with a different take on Alzheimer’s/dementia.

“Fighting through the emotions of it all and knowing ultimately what the result [of my mother’s condition] would be was so hard. It’s a cruel disease, but it has given me a drive to fight and to help not only find a cure, but build awareness and help family caregivers.” 

Since becoming a Volunteer Advocate, Ryne has lobbied his local leaders to support legislation to make Illinois a more dementia capable state. “Funding for research is so important,” shares Ryne. “It’s the key to fighting the battle. Physician training is something that’s been improved upon, but I think more is always better.”

Ryne volunteers so that dementia capable policies benefit all Illinoisians, not just those with access to large health systems. He emphasizes that “people and caregivers in smaller communities where big hospital access may be limited need to know they can discuss Alzheimer’s with their family physicians and find the help, resources, and direction they need.”

Ryne and his mother.

Last year, Public Policy staff, state legislators and volunteer advocates helped pass Senate Bill 677—which ensures ongoing dementia training for healthcare providers. It is the strongest dementia-specific education mandate enacted for healthcare providers in the country. In 2022, they are expanding their advocacy to guarantee dementia training for other professionals who serve those living with a dementia, including paramedics.

Ryne is participating in this month’s Illinois Week of Action (February 22-24) to honor his mother, his community in Harrisburg and all families facing dementia. He will join together virtually with volunteers across the state for the Opening Ceremony at 6pm on Tuesday, February 22. The event will be held via Zoom, where advocates, staff and legislators will share why they fight to end Alzheimer’s.

“No one wants to think about or ever have to experience Alzheimer’s. The disease is devastating to a family…Caregiver support is also very crucial and will better help the family and patient through the fight.” The Alzheimer’s Association offers support groups, Care Consultations and a 24/7 Helpline (800.272.3900) for families and individuals impacted by the disease.

In the end though, we all must come together to fight. It’s a common ground we can all agree on.” 

Join Ryne for Illinois Week of Action, February 22-24. Share your story and compel our state leaders to prioritize the fight to end Alzheimer’s—all from the comfort of home. Learn more and register at endalzillinois.org.