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Jim and Lisa’s Story: “Alzheimer’s Disease Can’t Have My Life While I’m Living It”

Jim and Lisa’s Story: “Alzheimer’s Disease Can’t Have My Life While I’m Living It”
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December 8, 2020
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In 2016, Alzheimer’s Association National Early-Stage Advisor Jim Butler was diagnosed with mild cognitive impairment (MCI) at age 68. Later, his diagnosis was changed to Alzheimer’s disease. 

“I’m a guy, so I dismissed issues I was having back in 2015 as nothing more than normal aging,” Jim says, which included a failed visit to his cell phone provider, where he was so confused in the loud, crowded store that he left without fixing his phone. But as these episodes continued to occur, Jim worried that there was something more serious going on. “My dad had Alzheimer’s, so sadly the disease was not a stranger to me.”

Turning Point

Jim quickly realized that he had to be proactive. He enrolled in a clinical trial at the Mesulam Center for Cognitive Neurology and Alzheimer’s Disease at Northwestern Medicine. He also joined a support group through the Illinois Chapter of the Alzheimer’s Association – an experience which empowered him to share his story publicly. “I got to know people who are also dealing with the daily challenges of living with Alzheimer’s disease, and I got to share my story openly, free of judgment.”

But it was two years ago that marked the major watershed moment, the day Jim spoke at his local Walk to End Alzheimer's. Since that fateful day, Jim’s priorities have shifted. “I enjoy the life that is in front of me: my wife, our friends and family, our dogs, our adventures. “I’m no longer afraid to say ‘I have Alzheimer’s disease, can you please explain that to me one more time?’” 

But Jim’s wife Lisa didn’t get to that place as quickly. “Jim is my best friend, my memory bank, my love of 40 years. For months after his diagnosis, I took a lot of showers, where I could cry without him knowing.” After Jim joined his support group, Lisa found her own outlet: therapy. Now she too has a safe place to talk through her fears. “My mother always told me that someday I would have to learn patience, and that is something I’ve worked hard on, for myself and for Jim. Answering the same question multiple times a day can be challenging, but it becomes part of the norm. 

I won’t sugar-coat it: it’s hard to hear a diagnosis. It is hard to process. It is hard to live with. But if you don’t share this journey with your loved one, you will miss out on so many moments that make you both stronger as individuals, as a couple, as a family.”

Jim relies on Lisa, the love of his life, and acknowledges what this process has been like for her. “Lisa has been a saint! I was a handful even prior to my diagnosis," he says, laughing. “I can’t imagine someone more supportive. As crummy as this disease is, it has brought us together in new, wonderful ways.”

Living Life with No Regrets

People with Alzheimer’s can continue to live productive and fulfilling lives, and Jim is evidence of this: his mission is to not let Alzheimer’s take more of his life than it needs to. “Alzheimer’s disease can’t have my life while I’m living it. I’m staying positive and experiencing life as much as possible.”

This isn’t as easy to do as a couple if both people aren’t on board, which Lisa knows firsthand. “If Jim hadn't taken the early initiative to get involved and not look at the darkness of the disease, it wouldn’t have allowed me to realize my own strength. Today, if Jim is having a rough day, I no longer let myself feel sad. I address what's going on and try to help him. We’ve both come to a place of acceptance.”

Jim’s role as part of the 2019-2020 Alzheimer’s Association Early-Stage Advisory Group — which helps bring the voice of individuals living with dementia to the national forefront — has been a blessing for the couple. “Everyone in the group is proactive and wants to live the fullest lives they can,” Lisa says. And Jim has connected with people that share many of the goals he has for his daily life. “We all want the best part of every day to be intimate, positive, connected, rewarding,” he says. “Being involved with my upbeat peers and their optimistic care partners has exposed Lisa and I to new ways of thinking. We are all people singing the same song, and although we may not be ‘winning’ on a medical basis, we are winning because none of us will let this damned disease take our lives from us while we are still living.”

In addition to his involvement with the Early-Stage Advisory Group, Jim still joins calls with the MCI support group he was first connected with. “As a person with a few years of ‘experience’ with Alzheimer’s and MCI under my belt, I can help shed a little light and bring hope to people who are newly diagnosed. It’s an important priority of mine to make a contribution.”

Speaking Out

Lisa is a colleague at CVS Health, and her priority has been to learn everything she can about Alzheimer’s. “Working for a healthcare company filled with a lot of smart people, I’m fortunate to have access to resources I need and to be my best me for Jim.” The advice she gives others is simple: “Get help early,” Lisa says. “Don't be ashamed. If you had cancer, you would tell people. There is nothing shameful about an Alzheimer’s or dementia diagnosis.”

In addition to being thankful to her colleagues at CVS, Lisa is grateful to be engaged with the Alzheimer’s Association. “Their care and support has been a virtual savior for us, and participating in clinical trials has opened my eyes. I now view Jim’s diagnosis as an opportunity to educate the public about what it’s like to be living with early-onset Alzheimer’s. This disease may have changed our lives, but we are choosing to be positive in the face of what’s to come.”
“No one lives a charmed life from birth to death,” Jim adds. “I am grateful to be where I am with people I love, living it to the fullest and sharing my story with my wife.”

CVS has made a three-year, $10 million minimum commitment including customer fundraising, caregiver support and a Walk to End Alzheimer’s National Presenting sponsorship. The November 2019 and 2020 in-store fundraiser exceeded expectations, which is a testament to the profound impact Alzheimer’s disease has on families.

Related articles:
Earlier Diagnosis
CVS Partnership

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