Local family creates bucket list for terminally ill dad

FRANKLINVILLE, N.Y. (WIVB)- 54-year-old John DeBeau has a busy year ahead of him.

The father of ten learned he has Lewy Body Dementia in August.

“I just put it up to old age, you know I’m getting older, and then it got to the point where I’d wake up sometimes and not even know where I was in my own house,” John told News 4.

He and his wife Lori don’t want to waste a second of the time they have left.

“We could sit here and wait, some day we’re gonna do these things. We don’t have someday no more,” Lori said.

The DeBeaus are starting their someday now. They’ve created a bucket list of things they’ve always wanted to do together; from visiting the Statue of Liberty to seeing family across the country.

“We spent our lives raising ten children. And this was supposed to be our time,” Lori said.

The retirement she always envisioned for her and John isn’t in the cards anymore.

It all started a few years ago, when John was acting different on family trip.

“He was repeating stories, over and over again within the same day. So we had picked up on that. And by the time we got back here we had noticed there was big holes in his memory. He kept forgetting things, forgetting where he was putting things.”

“In the beginning it was devastating,” John told News 4.

“I made jokes about it sometimes but you know, just to keep from crying really.”

His doctors said his time feeling like himself, is limited. Lori and John are determined to make the most of it.

“I traveled the country. But I never got to see much of it. You know I was working 12 hours a day, seven days a week,” John said.

Before the DeBeaus were able to make pace with John’s diagnosis, they spent a couple years desperately searching for answers.

“John was frustrated. He was getting angry because he knew he was losing his mind. By this time he had trouble tying his shoes, he can’t read anymore, he can’t write anymore. And they’re just telling him he’s depressed,” said Lori.

It took the DeBeaus more than two years to get an accurate diagnosis; once they got it, Lori quit her job to spend as much time with her husband as she can.

They see John’s Diagnosis less as a problem, and more as a reason to live life to the fullest.

“We’ll probably have a year to two max that he’s going to be independently functioning. That he’ll remember us, that he’ll be able to walk, things like that,” Lori said.

She’s is calling this year “The Year of John.” For the DeBeaus, it’s a year to make memories, love another, and to not miss a thing.

Click here to support the DeBeaus’ Go Fund Me Page

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