Reprinted from The Philadelphia Gay News
November 20, 2015
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.