N.J. couple shares their life with dementia at LGBTEI forum

N.J. couple shares their life with dementia at LGBTEI forum

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Tim Kaufman returned from a business trip to Denver in early 2010. He tried to tell his boss at an Internet hosting company in Delaware about the trip. But he couldn’t.

“Suddenly, I couldn’t get my words out,” said Kaufman, 58. “I was starting to mumble. I couldn’t remember the words.”

He called his doctor in Philadelphia, who told him to come to the office right away. Kaufman had experienced a stroke and had several smaller ones over the next two years. Sometimes he would lose vision in one eye and started having trouble making decisions and plans. He used to dismiss the issues as stress-related.

It wasn’t until spring 2012 that Kaufman received a full diagnosis: frontotemporal dementia, called FTD.

“I had to go to so many doctors’ visits,” he said. “It was hard to get a diagnosis. Because of my age, nobody wanted to admit it could be dementia.”

Throughout, Kaufman’s partner of nearly 20 years, Ron Bongart, advocated for him. Bongart pushed doctors to consider every option and started going to therapy with Kaufman. He said it helped both of them to discuss if he could become Kaufman’s caretaker.

“You really have to search your soul if you’re going to be someone’s caretaker,” said Bongart, 62. “It really is the hardest thing I’ve ever done.

“Our life has changed. It’s going to continue to change,” he added. “I really feel as though Tim always will be my soul mate. I love him dearly.”

The couple lives in a 55-and-older community in Southampton, N.J.

Kaufman and Bongart spoke with PGN before sharing their story this month with dozens gathered at the United Way of Greater Philadelphia and Southern New Jersey for “Aging Mind 102: Dealing with Dementia,” hosted by the LGBT Elder Initiative.

Since receiving his diagnosis, Kaufman has participated in speaking engagements and peer-to-peer phone calls facilitated through the nonprofit Alzheimer’s Association. But he and Bongart thought it was important to address the issue from the perspective of a gay couple.

“There really was no group that dealt with the fact that it’s different for a gay couple or a gay person,” Bongart said. “We don’t have kids or big support systems usually.”

Bongart said both of his parents and Kaufman’s father have died.

“The gay community is really missing out,” he said. “We’re aging just like everybody else. We need to try to connect with other people that may be experiencing some of this and aren’t finding any support.”

Kaufman and Bongart met at a bar around Christmastime 19 years ago. Both said they were immediately drawn to the other. But each man had just come out of a long relationship. They took things slowly, describing the process as a true courtship. Bongart said they became best friends first and had a relationship second.

They bonded over a love of remodeling homes. First, the pair renovated Kaufman’s place in South Philadelphia. Later, they moved to a condo in Marlton, N.J., and spent three or four years fixing it up before selling it for a house in Cherry Hill. 

Looking for a more supportive living environment in the wake of Kaufman’s diagnosis, the couple moved to Southampton.

Neither works outside the home. Kaufman receives disability benefits while Bongart has taken on the full-time occupation of caring for Kaufman. The men also consulted an attorney to put anything they owned into Bongart’s name.

Bongart said he is “basically in the driver’s seat”; Kaufman said he trusts Bongart implicitly. Bongart added he wants to balance caring for Kaufman without making him feel incapable or unintelligent.

Kaufman emphasized that the system of care he has developed with Bongart works for them, but the experience is different for everyone. Even people with the same FTD diagnosis as him experience the symptoms differently, Kaufman said.

Kaufman and Bongart wake up early each morning. Bongart decides on breakfast and what project around the house they will start. Bongart monitors Kaufman and intercedes when necessary.

“Something that’ll take Ron 15 minutes to do will take me two hours,” Kaufman said. “I could be spinning my wheels for days. I don’t have a semblance of time.”

“The trouble with this diagnosis is it’s not just me,” he added. “It impacts everyone around me: my partner, my friends.”

Bongart said Kaufman sometimes responds to situations in an extreme way; he might use Clorox to clean the floor after spilling a little of his drink. Kaufman said Bongart steps in to help him about 20-25 times a day, and noted he nicknamed his partner “Superman.”

At dinnertime, Bongart decides on the meal and watches while Kaufman cooks. They have a couple close friends in their community, with whom they spend time occasionally. But, most of the time, their world has narrowed to include just the two of them.

“We may not have a relationship like we did before,” Bongart said. “But the journey is ongoing.” 

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