Treading the path of a “long goodbye”
Kenmore native discusses personal struggles with Alzheimer’s Disease
David Gonlag thought memory loss was just part of getting old. He had watched people in his family age — living alongside them as their memories faded. This, he thought, was common for the elderly.
He never expected such issues to affect him at age 55. At first he was forgetting where his keys were, or missed an appointment here or there. Small inconveniences that were justifiably “normal.” But in 2014, he found himself at a gas station, unsure why he was there. He had a feeling that he was supposed to be heading to a doctor’s appointment. Or perhaps he was returning from one. He simply couldn’t recall, and didn’t know what to do next. He phoned his wife, Donna, hoping that she could tell him.
“I was constantly forgetting things,” he said. “I kept telling my doctor, but he kept dismissing it.”
Middle-aged, with a wife and four children, Gonlag wasn’t prepared for Early-Onset Alzheimer’s Disease. Gonlag, of Kenmore, wasn’t nearly as old as his grandmother, or his aunt, who also suffered from memory loss.
More than 6 million Americans and nearly 400,000 New Yorkers are affected by Alzheimer’s disease. According to the Alzheimer’s Association, Alzheimer’s disease is a degenerative brain disease and the most common form of dementia. Dementia is not a specific disease. It's an overall term that describes a group of symptoms. To raise awareness and promote a sense of community, the Alzheimer’s Association, Western New York Chapter hosts an annual “Walk to End Alzheimer’s.”
“We want to let the community know we are here as much as possible,” said Maddie Weitz, events coordinator.
There are many different programs to provide specific help. The most accessible is a free hotline (800-272-3900) that offers confidential support and information. There are online and face-to-face support groups for those affected by Alzheimer’s. These offer a collaborative way to understand the disease and discover resources. The Alzheimer’s Association also promotes a “Community Resource Finder” to offer information about dementia and aging.
“We are a community within a community,” Weitz explained. “We generally get people from all walks of life, and everyone understands each other.”
The Walk to End Alzheimer’s will be held at the scenic Outer Harbor Buffalo on Saturday, September 24. All funds go to care, support and research efforts of the Alzheimer’s Association. For more information, and for registration, click here.
“There is always going to be a need for more awareness,” said Weitz.
This is important for people like Gonlag, his family, and others, who may not recognize the symptoms of early Alzheimer’s. With better understanding and more knowledge, they could seek resources for help sooner.
After being confused at the gas station, Gonlag saw a doctor, who recommended that he visit a neurologist.
Gonlag was in his mid-twenties when he was directly affected by Alzheimer’s. His family and his grandparents lived in the same house until 2006, when he moved to Kenmore. His grandparents, Allen and Elva Jolls, occupied the downstairs flat. Gonlag’s parents, Fred and Elaine, lived upstairs. When Elva’s dementia diagnosis came in 1985, the family addressed her struggles. Dave’s parents were the primary caregivers, but it was a daunting task.
She had good days, but quickly, those became few and far between.
“We used to play solitaire,” he remembered fondly. “I was the only one she remembered. Within a year, she didn’t even recognize her husband.”
Despite being in her late seventies, there were times when she became agitated and needed to be restrained — sometimes by more than one person. Dementia turned her into someone unrecognizable — so different from the woman Gonlag had played cards with.
“She started swearing like a sailor,” Gonlag recalls. “It broke my grandfather’s heart.”
When the physical struggles became too much to handle, Gonlag’s family made the difficult decision to move her to a care facility. Throughout the following year, she deteriorated quickly and passed away from dementia three years after her diagnosis.
Gonlag’s aunt, Kathryn Jolls, Elva’s sister, was also struck with memory loss. Jolls’ Alzheimer’s condition carried paranoia and hallucinations. More than once she called the police, insisting that someone was breaking into her home — a result of her condition. No strangers were on her property. Jolls lived alone at the time, but Gonlag’s family encouraged her to move in with them for her own safety. Finally, in 2007, she did.
A year later, Jolls moved to an independent living facility, and this was a better situation for her.
“It gave her social interaction, and brought her back to reality,” Gonlag explained.
Gonlag was pleased that with care, she was able to live on her own. Jolls’ long-term memory remained intact, although her short-term was a struggle. She recalled events from the past, but needed reminders about present events.
When Jolls started to wander throughout the independent living home — and sometimes outside — she became a liability. For her own protection, she was moved to a memory facility. She would have bad days and then she would “level off,” Gonlag said.
He appreciated the way that the staff took care of his aunt. Jolls passed away in the memory facility in November 2015.
Gonlag’s Alzheimer’s diagnosis occurred shortly before, in 2014. With his experiences, Gonlag sensed he needed help. He was referred to the Alzheimer’s Association by someone from work.
“Contacting them was the best thing I ever did,” he said. “Learning about it made all the difference.”
As he researched more about the disease, he was able to understand and appreciate his aunt’s struggles. He grew confident about how to handle her behavior and interactions. He sympathized with her memory loss.
Gonlag and his wife, Donna, were both involved in support groups at the Alzheimer’s Association. This was one of the most influential aspects for the couple. There are support groups for different types of dementia, and this allows for specific experiences.
“The social workers are phenomenal,” he stated.
Gonlag attends a support group with others who have Alzheimer’s, while Donna attends a separate group for caregivers.
“Being able to be separately supported has helped immensely,” he said.
Looking back on his family’s care of their elders, he appreciates their efforts, considering that before his own diagnosis, he had such limited knowledge of the disease.
“People who were caregivers didn’t understand what they were going through, when they were going through it.”
Gonlag was diagnosed with Amnestic MCI (Amnestic Mild Cognitive Impairment) in spring 2014. Within a year, based on the results of MRI and PET scans, the diagnosis became FTD (Frontotemporal Dementia) with an Alzheimer Variant. He was given between 18 months to five years to live.
“That was eight years ago,” he said with a shrug.
Gonlag described how the disease hasn’t progressed, but doctors are unsure why. Lack of a drastic decline has resulted in a return to the original diagnosis (Amnestic MCI) He appreciates that he has outlived his timeline nearly twice over. These days, he is determined to raise awareness and help others.
“No one wanted to talk about (Alzheimer’s Disease),” Gonlag said. “It was like cancer when I was younger. But I just made up my mind to tell others about it.”
story © 2022 by Jenna Manney
Jenna Manney is a graduate of SUNY Geneseo with a degree in communications. A Hamburg native, her hobbies include sailing and digital marketing.
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