In Nancy’s Name

Good Neighbors: John Renyhart

By James Blevins

John Renyhart honors the love of his life by working hard to help others with Alzheimer’s.

John Renyhart met his wife, Nancy, at a Sadie Hawkins dance at the State University of New York at Fredonia in 1961. She wasn’t alone at the time and neither was he, but after the dance, someone told John that Nancy wanted to know more about him.

One thing led to another and they became an item. “I was a sophomore at that point,” remembers John, now 78. “She was just mentoring as a freshman at college. We completed our degrees and we got married in 1965.”

At the time, John worked for nonprofit organizations. Starting in 1964, he worked for the Boy Scouts of America while living with Nancy in the Bronx. They had a son, Charlie, and moved to Syracuse. Five years later, another son, Donald, was born.

The Renyhart family would move from New York to Pennsylvania, then to New Jersey—where John began working from the Boy Scouts of America’s national headquarters outside of Trenton—before settling down in Long Island for 25 years.

After over two decades in the Scouts, John decided to change careers in 1985.

“At some point I knew I couldn’t advance in scouting,” says John. “So I said, ‘Well, let’s try something else.’”

JOHN SHIFTED CAREERS and became executive director of development at Dowling College and director of development at the New York Institute of Technology. He joined United Way as its SVP of marketing and communication in 1987. He was also director of development for the Long Island Museum from 1995 till retiring early in 2004 at the age of 62 after a 40-year career in non-profit management and professional fundraising.

“I was pretty much burnt out by that point,” says John with a laugh. Like a lot of people eyeing retirement, John and Nancy had their eyes on Florida, partly because John’s dad, who had Alzheimer’s, lived there, and John wanted to be closer to help care for him.

They moved to Ocala on Labor Day in 2006.

“We ended up in Ocala Palms Golf and Country Club,” says John. “But that was only one of maybe half a dozen communities that we looked at.” It wasn’t until 2009 that John realized there was something going on with Nancy. Suddenly, her memory wasn’t as sharp as it used to be.

“She would forget things,” says John. “She would forget what you had for breakfast. And then, if we were in the car going someplace, she’d say, ‘John, where are we going?’ I’d tell her and she’d forget and ask again five minutes later. At one point, I’d have to write where we were going on a piece of paper.”

In 2011, she was formally diagnosed with a mild cognitive impairment. By 2013, it had progressed to become Alzheimer’s. There had been no previous history of dementia in Nancy’s side of the family prior to her diagnosis. It seemingly came from nowhere. John would care for Nancy on his own for two years but would enroll her into Blessed Trinity’s eldercare program in 2015.

“It’s a wonderful program,” says John. “It’s still going strong. She was there for about a year. Unfortunately, with Alzheimer’s, as I discovered, one of the things that happens and what happened with her was that she had trouble swallowing. They said, ‘We can’t really have her in our program, because we just don’t have the capacity to deal with that issue.’ From that point on, things really went downhill because that’s where we got hospice involved.”

At this point in Nancy’s decline, she was bedridden. She couldn’t do any of the normal activities of daily living. She couldn’t walk. And she stopped communicating.

“One of the most difficult parts of caring for her, and in terms of interaction, was that she couldn’t communicate—I mean, other than facial expressions from time to time. And that was very hard.”

For five years, John didn’t have any kind of conversation with the girl who stole his attention and his heart at the Sadie Hawkins dance all those years ago. According to John, any form of dementia, be it Alzheimer’s or Parkinson’s, contains a variety of dimensions. Sometimes the behavior is different, but the progression is usually very similar.

“Nancy was never violent and she never used foul language,” explains John. “So that wasn’t her type of dementia, but it was certainly challenging.”

As Nancy’s health continued to decline, John discovered the role of caregiver. He enrolled in a five-week training program, learned about the various stages of Alzheimer’s and other forms of dementia and how to properly react to the many behaviors that manifest themselves in Alzheimer’s patients.

He learned how to take better care of Nancy, and even of himself.

But by mid-June of 2015, Nancy was forgetting how to swallow. By July of that same year, her health was being managed by Hospice of Marion County.

Despite these setbacks, Nancy would fight on for a further five years—five precious years to John—but in April of 2020, Nancy Renyhart, John’s wife of 55 years, passed away.

Naturally, John was devastated at his and his family’s loss—two sons and four grandchildren were left without their mother and grandmother, respectively—but after seeking out grievance therapy, John came to understand what his path going forward needed to be.

“I was able to see how I could give back and help other people that are about to take the same journey that I did,” says John. “Looking in the mirror, I just wanted to be helpful to other people and not forget my wife in the process.”

John Renyhart

Photo by Steve Floethe

John is now a volunteer at Hospice of Marion County and part of its philanthropic advisory board. The very hospice that helped him and his wife in their time of need. “That’s why I do so much for hospice,” says John, “because they helped us.” He also started hosting a caregiver’s support group.

“When we realized that more than half the people were coming from Ocala Palms to the support group,” says John, “I said, ‘Why don’t we do this back in our community?’”

Aa a part of his efforts to help others experiencing the same turmoil of caring for a loved one suffering from dementia—and to honor his wife’s memory—he started the Nancy Renyhart Endowment for Dementia Education through the Hospice of Marion County.

Using his skills that he earned over a lifetime’s worth of helping raise money for nonprofits, John has helped the endowment raise over $100,000 to date.

“This is what motivates me,” he says. “The big thing that has become an obsession with me is that I pay it all back. It’s all about sensitizing and educating people.”

With money raised through the endowment, John hopes to hire a fulltime dementia educator at the Hospice of Marion County. That will take some time, John admits, but the key word in dealing with anyone suffering with any form of dementia is patience. And John has an abundance of that.

“A lot of people are not very patient as they go through life,” says John. “But when you’re working with someone that has dementia, it requires a lot of patience.”

Nancy would want him to be doing something productive with all the time he has left, says John. She’d want him to find purpose and meaning, and to help others. All of that he accomplishes with the endowment in her name.

“After Nancy passed,” John sighs, “I told myself that I wasn’t going to allow myself to go into a depression. I had to have a purpose to move forward.

“And now I do,” assures John. “Every day is an adventure I’m grateful to have.”