Dave Gonlag remembers living in the same house during the 1960s with his great-grandmother, who was bedridden with dementia. His great-aunt succumbed to the disease in the 1970s. His grandmother struggled with it a decade later.
“She was the sweetest lady ever,” Gonlag said of his mother’s mom. “I never heard her swear in her life until that happened, and then it was kind of like sailor talk, only worse. She got to where she didn't even know her husband and they were married over 60 years.”
One of his relatives died quickly after she was diagnosed. Others – including his mother’s sister, a school teacher and active retiree – lingered for more than a decade before living at home became impossible.
Those experiences raised anxieties as Gonlag’s memory began to slip a decade ago. They intensified after he was diagnosed in late 2014 with early onset dementia, at age 55. Many would shrink their world in such circumstances. Instead, Gonlag reached out, becoming the first person with his condition to join the board of the Alzheimer’s Association of WNY. Earlier this year, he also became a member of the Alzheimer’s Association National Early-Stage Advisory Group.
“I’ve seen this through all vantage points,” said Gonlag, now 60, of Kenmore. “I feel like I was meant to be where I am right now.”
Gonlag works closely with regional chapter Early Stage Services Director Shelby Edgerly. He has become a peer who can sit down with those newly diagnosed to give them a better sense of the road ahead – which will be different but can hold its share of meaningful rewards.
Meanwhile, he said, “I want to know as much about what's going on with me as possible.”
Before his diagnosis, Gonlag worked as an accountant making a six-figure salary. That became impossible as he started losing track of more and more details – in some cases entire conversations and just-completed staff meetings.
“Cognitively, I'm still able to understand things,” he said, but many of the fine points are quickly forgotten and difficult to reconstruct in his memory.
Gonlag said he was glad he shared his struggles with his bosses, who encouraged him to reach out to the Alzheimer’s Association after his diagnosis. The association, and the University at Buffalo Center of Excellence for Alzheimer's Disease, were able to help him transition to a life after work, bring him in contact with others going through similar experiences, and teach he and his wife, Donna, how to best cope with the mood changes, repetitive questions and other symptoms that can challenge even those with almost boundless patience.
“When you get into support groups, you realize other people are going through this, too,” Gonlag said. “They’ve all got different coping mechanisms, including some that might work for you.”
The chapter allows those with Alzheimer’s and other dementia to find an elder care attorney, better navigate the health care system, and plug into an educational and social program that serves those with early stage dementia and their caregivers.
Gonlag has experienced stability in his health during the last two years. He credits Alexa – his virtual digital assistant – and a smartphone calendar he shares with his wife for part of the relative serenity at home. He also plays online word association and other games to keep challenging his mind.
Dave and Donna Gonlag will celebrate their 40th wedding anniversary next weekend. He bought her a better ring earlier this year. He figured, why wait?
“By the time I'm at the stage that I'm worried about getting to, I'm more than likely not going to realize I'm at that stage,” he said, “so that's not a problem for me. That's a problem for my family. And that's where now it gives me that much more opportunity to take advantage of the time we have.”
Still, he said, he wants his wife, four children and others in his life to understand “that as I change, it's still me.”
For more information, visit alz.org/wny or call 800-272-3900