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.