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Dying young from dementia: family shares story to spare others the same ordeal

BALLSTON LAKE, N.Y. -- You might remember a restaurant owner News 10 visited back in the fall, when an anonymous donor kept her business from foreclosure. Her financial problems stemmed from years of medical bills for her husband, and a disease that eluded the family for almost a decade.

The Saratoga County wife is opening up about her ordeal to give some hope to others who might think they're alone in their suffering. She wants people to know what she never thought was possible, to spare them some of the questions that tortured her family for years.

The Good Times Restaurant was a lifelong labor of love for Desiree Kelleigh and her husband, Hugh, who was meticulous with his original stenciling throughout the dining room.

"He was a drop dead gorgeous man, 6 foot 1, no signs of any illness whatsoever," says Desiree.

In his mid-30's, Hugh's behavior changed.

Desiree explains, "He would have these loud outbreaks of yelling and screaming throughout the dining room at the restaurant. He would say horrific, ugly things that he would have no memory of."

For years, the couple and their two children blamed stress from running the business.

The breaking point came four years ago.

"He got angry and he came at me with a knife," says Desiree, "enough to scare my daughter to call 9-1-1."

Police gave Hugh a choice: jail or the hospital. An MRI revealed multiple sclerosis and frontotemporal dementia, a severe neurological disease. Hugh was just 42 years old.

His doctor, a top neurologist at Albany Medical Center, has about 40 other dementia patients in their 40's or 50's.

Dr. Earl Zimmerman explains, "Frontal lobe involvement, with a judgment problem as a presentation, is often missed. The person seems a little different, little odd...they often have a history, well they lost their job, they don't quite know why, they got divorced, they don't quite know why."

Dr. Zimmerman says younger patients in particular often downplay the warning signs, since Hugh's form of dementia and other diseases like Alzheimer's mostly affect the elderly.

"Our society just isn't tuned into this," says Zimmerman. "I think it's just amazing!"

Desiree was forced to put Hugh into a nursing home, and medical bills brought her business to the brink of foreclosure. Through it all, she's found some peace.

She says, "There was a relief that day, of knowing that there was a reason for why the love of my life, this most amazing, caring, loving man, was acting so carelessly."

Dr. Zimmerman says there are promising drugs on the horizon, but nothing that can offer a cure.

Desiree keeps up the Good Times, not knowing how much time her husband has left.

When asked how she moves forward, Desiree says, "It's the love of my children and their strength, and their desire to be amazing young people, and to make a difference."

The Kelleigh's daughter is already trying to make a difference by studying to become a brain surgeon.