As Darlene Gonyo lost her memory, her husband gave her chances to remember their love

Nov. 19—Jerry Gonyo has a kind of code.

"One is to TODAAT — take one day at a time — and I have another one, that's PIF, pay it forward," Gonyo said.

Gonyo has taken those words to heart, particularly while he was caring for his late wife, Darlene Gonyo. She was diagnosed with mild cognitive impairment and later Alzheimer's disease, and Gonyo retired to dedicate his days to caring for her. He put together scrapbooks and decorated her rooms at different assisted living facilities where she lived so she would feel comfortable. It sparked a passion for volunteering, advocating for and donating to the IU Health Alzheimer's and Dementia Resource Service, which provides support to professional and family caregivers.

"Fifty-eight years ago today I said 'I do,'" Gonyo said on Tuesday. "We spent 56 years together and had a lot of fun times and then entered into a new journey back in 2002."

That was the year Darlene was diagnosed with mild cognitive impairment.

"You know when they say basically for better or worse?" Gonyo said. "It was better 58 years ago."

At the time of Darlene's MCI diagnosis, the couple lived in Arizona. Darlene received home care before eventually moving into a nursing home, Gonyo said.

When he was caring for Darlene at home, the two took out all of her old photographs and put them in an album spanning Darlene's 79 years of life.

"She has a lot of stories and stuff and later on I used those pictures and music and a lot of other things as far as therapy with her and just to make her comfortable," Gonyo said.

The day before Darlene moved into an assisted living facility in Arizona, he decorated her room so when she came in, it would look familiar to her.

"So I had all her pictures there, her Snoopy, her dolls and so forth were there," Gonyo said.

Darlene was diagnosed with Alzheimer's disease in 2012 and, in 2016, the couple moved to Bloomington because their adult children were concerned not only about their mother, but their father, too. Being in Bloomington brought them closer to family, and here, Darlene stayed at Hearthstone Health Campus.

He took the same approach in decorating her room when she moved there.

"She said, 'Oh, this looks like my room,'" Gonyo said. "That was the focal point and she would get involved and she could remember some of the pictures I had up there or some of the dolls and things like that, so it's kind of like a show and tell type of thing."

Gonyo said he was involved in a lot of support groups, including ones tied to the Alzheimer's Association and local groups in Arizona that gave him some perspective on hands-on caregiving, so once in Bloomington, he got involved with the local Alzheimer's and Dementia Resource Service program at IU Health.

"My wife passed away in 2019, but I continued on to work on behalf of other caregivers and support groups — what I could do support wise and and also financially," Gonyo said.

Dayna Thompson, ADRS leader and Alzheimer's educator with IU Health, said the ADRS program, which is part of the community health department of the hospital, is able to offer all of its services at no charge to the community.

"Under the umbrella of what we do, the core of that is client support, so helping people who are living with dementia and their families to figure out how is it that we understand this disease and live with it meaningfully," Thompson said.

ADRS does private consultations to help families learn about resources and figure out what steps they can take for their situation. ADRS also offers support groups for those with a diagnosis and their caregivers. Thompson said several of the IU Health South Central Region's 11 counties have what they call dementia friendly efforts.

"So we work and collaborate with other people in the community to build systems and spaces that are welcoming and supporting of people living with dementia," Thompson said.

Thompson said Gonyo is on several committees in Bloomington that support those efforts, including the Community Dementia Alliance.

"Ideally, we want people living with dementia to continue to connect in the ways that are meaningful for them and feel supported in doing that, because isolation is so dangerous, it is deadly," Thompson said. "And so we want to make sure that we are supporting them in our community."

Gonyo said getting involved in support groups through ADRS helps people learn about things like music therapy and helps give people a playbook they can work from.

She loved music — jazz in particular — though Gonyo said he converted her over to liking country and western a bit, too.

"We played a lot of music tunes and she would kind of bop around," Gonyo said. "And she had a cornet, or a trumpet, and she had it for many years."

Gonyo said at Hearthstone, a man would come in with a trumpet and let Darlene push the valves, which was something she that perked her up.

"Music was a good therapy for her," Gonyo said about his wife.

"The love between those two was clear even in her last days with how gentle he was with her and how she even would look at him differently than the other people in the room," Thompson said. "I didn't get to meet her until pretty near the end of her life, but there were no questions in my mind how strong that bond was. It was just amazing."

The bulk of the money Gonyo has raised and donated to ADRS is going toward expanding training for health care professionals and students through the home health aide and CNA program throughout the region, Thompson said.

"If I was able to pay it forward in giving help and support to the groups, and also financially, I felt that that was my return on investment, and it kept me active," Gonyo said.

"This program is one that we designed around the currently existing home health aide and CNA curriculum that are available through the state," Thompson said. "We have actually added 20 hours of dementia training to the beginning of the program."

That program started at Hoosier Hills Career Center, Thompson said. There, students in high school can earn CNA certification and Dementia Friendly Caregiver Certification. That program is now at other high school career centers in the state, Thompson said, and classes are also available locally for adult learners and through IU.

A strategic plan is in the works to expand the home health aide and CNA programs to other area counties thanks to Gonyo's funding, she said. Thompson said ADRS can't do what it does without volunteers, and said as much as Gonyo has donated in funding, he has also donated much more in volunteer hours and advocacy.

Diane Buzzell, IU Health Foundation South Central Region Director of Philanthropy, said the community is fortunate to have Gonyo's support and to have the ADRS in Bloomington, since it's an aging community.

"I'm grateful to be a part of Jerry's journey and the impact that he's making," Buzzell said.

Buzzell said Gonyo did "a phenomenal job" making sure Darlene was seen as a daughter, wife and mother, and not just a patient with Alzheimer's. He showed that she had a story, even though she herself may not have been able to share that story with the people coming in to care for her, Buzzell said. When CNAs are able to have that extra dementia and memory care training, they know how to approach patients in that way — as people with lives and stories, even though they can't tell those stories, Buzzell said.

"I think Jerry, and the way he cared for her and the way he was attentive to her, was important and meaningful to the end of her life," Buzzell said.

And that's been noticed. Gonyo said as he's out and about in the community, people stop him and say, "Hey, are you the Alzheimer's guy?" He laughs. He said he likes having the opportunity to connect people with resources.

"Jerry has found himself kind of an accidental mentor to many people in this community that he's met along the way," Thompson said. "And I think they're really lucky that they have found him."

In the spring, a professional caregiver recognition event will be held. Caregivers from the community can be nominated, nominations are reviewed by the Community Dementia Alliance, then some caregivers are chosen to be recognized with award. There will be an award named in honor of Jerry and Darlene, Thompson said.

For more information about ADRS, visit IUhealth.org, click on "in the community," click on South Central Region and find Alzheimer's and Dementia Resource Service. Donations to support IU Health Bloomington ADRS can be made by contacting Buzzell.

Contact Emily Cox at 812-331-4243, ecox@heraldt.com or follow @HT_InSchool on Twitter.

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