There are few things families dread more than a devastating health diagnosis. When that diagnosis is Alzheimer’s Disease or dementia, the fear and uncertainty is often exacerbated by misconceptions about the disease and feelings of isolation.
“Before I was diagnosed with Alzheimer’s, I thought it was ‘Old-timer’s Disease,’ something that some people in their 80s got as part of the aging process before they died,” said Mike Hughbanks, who was diagnosed with early onset Alzheimer’s in 2015 at age 58 while working as a corporate executive in the finance industry. “The doctor was brutally honest with me. He said there was no pill, and no cure. That was a shock. But I had to do something. I wasn’t going to sit in my living room waiting to die.”
Hughbanks was immediately connected to the Omaha chapter of the Alzheimer’s Association, through which he and his wife, Debra, began attending a support group for newly diagnosed patients and their spouses. “It was a turning point for us. It made all the difference,” he said.
Bill Myers, who helped care for his wife, Mary, for 14 years from her initial diagnosis in 2004 to her death in 2018, agreed. “I quickly learned I was not alone.”
Hughbanks and Myers are among more than 34,000 Nebraskans with Alzheimer’s or a related dementia, and their families, that the Alzheimer’s Association serves. Elizabeth Chentland, director of communications for the Nebraska Chapter of the Alzheimer’s Association, said that the early-stage support groups and educational programming offered throughout the Omaha Metro are often a family’s first introduction to the organization and are invaluable for helping them navigate the journey.
The Alzheimer’s Association provides resources for people at every stage of progression of Alzheimer’s and other forms of dementia. “Our resources go to a lot of platforms,” Chentland said. “But where it relates to public service, our top five areas are our helpline; our online resources and free family and caregiver chat boards online; our free educational programming; our support groups and our safety services, including a medical alert system that first responders can use to access medical information and contact caregivers.”
Chentland said that the helpline can connect a caller to master’s-level social worker but also addresses basic questions. It is available 24/7 and national, but linked to the local chapter so that someone in Omaha can follow up the next day, if necessary. “We are here for anyone that calls. With Alzheimer’s there are thousands of questions, but we want people to know that the answers are just a phone call away,” Chentland said. “It’s an all-around great place to start a conversation.”
The Alzheimer’s Association is always seeking ways to support more families, including expanding their support group reach, particularly in underserved communities, and partnering with worksite wellness programs to better provide employer support to caregivers.
Alzheimer’s patients and their families are often the best ambassadors for others in their situation. “Even after my wife passed away, I’ve continued to work closely with the Alzheimer’s Association because I think I have something to offer,” said Myers, who has served on the planning committee for the annual Walk to End Alzheimer’s.
Hughbanks has traveled throughout Nebraska with the association, speaking to groups in Omaha as well as rural communities about the resources available to them. He has made numerous local television appearances and maintains a blog to share the triumphs and challenges that he and his wife encounter.
One of his proudest achievements is working with Art to Remember. This innovative partnership between the Alzheimer’s Association and Joslyn Art Museum was inspired by the MoMA Alzheimer’s Project and helps patients in middle- and-late-stage dementia engage with art from Joslyn’s world-class collection. “Art speaks to people. People in middle-and-late-stage Alzheimer’s, who may be having a hard time engaging with much else that’s going on around them, will see a piece of art and immediately get tears in their eyes.”
Recently, Hughbanks was also diagnosed with Lewy body dementia after he started experiencing tremors, and his doctor ordered a PET Scan. While, once again, he acknowledged that this new diagnosis is not good news, he is grateful that he was able to get it, because many insurance companies would not have covered the scan.
“Our call-to-action is twofold,” said Chentland. “Our goal is to serve more families, both from the services we provide and from a public policy standpoint. We work to help physicians get more time with their patients and ensure that they are doing the appropriate testing because different types of dementia call for different types of medication and treatment. We work diligently to increase public funding and pass Medicare codes and caregiver tax credits to help provide a better reality for people with dementia and their families.”
As Myers, who was able to care for his wife for 10 years at home, and four years in a facility, said, “Three things got me through this journey: my faith, my family, and the Alzheimer’s Association. They’re a vital tool and a great resource for a little bit—actually, a lot—of everything.”
This article was printed in the March/April 2020 edition of Omaha Magazine. To receive the magazine, click here to subscribe.