TOMS RIVER - Gerri Eichele leaned over and planted a gentle kiss on her younger brother’s forehead as he lay in his hospital bed.

He didn’t respond.

“This is the hardest thing I’ve ever had to go through,” she said. “I know death is something we all have to go through, and I realize it’s coming faster for him.”

Gerri rubbed a hand over her face. She’d been sitting beside Billy Eichele in Community Medical Center almost continuously for the past week, sometimes sleeping upright in a chair.

“He trusts me and he loves me unconditionally,” she said. “I don’t want to feel like I let him down.”

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At 50, Billy was nearing the end of a remarkable life. In his younger days — before the inclusion boom — having Down syndrome might have meant limited exposure to the everyday world. Not for Billy. He earned a blackbelt in karate, broke swimming records in the Special Olympics and held down jobs at fast-food restaurants.

“Kind, funny, generous and a go-getter,” said Kathy Herenchak, a longtime family friend who lives in Jackson. “He felt he could do anything. He didn’t have that fear everybody has: ‘What if I fail. What if I can’t do this?’”

When Billy was born, the life expectancy for someone with Down syndrome was in the mid-20s. Now it’s close to 60. His diagnosis is dementia, with complications. He’s lived with Gerri Eichele much of his life, although she rejects the label of caretaker.

“He’s given me way more than I could ever give him,” she said.

That’s why the decision Gerri faced was so agonizing: Whether to remove the ventilator that kept Billy alive, but in a non-responsive state.

It’s a brutal crossroads, but a common one.

Preparing for the worst

Billy Eichele’s decline began about three years ago and took a sharp downturn in August, when his blood pressure plummeted and he became unresponsive. Eventually things reached the point where Gerri had to decide about the ventilator. For several days, she just couldn’t bring herself to choose.

“I’ve let him go a dozen times in the past couple of weeks and second-guessed myself,” she said.

That’s not unusual. Not at all.

“Our society in general doesn’t like to talk about death,” said Colleen Beach, a professor of social work at Monmouth University who specializes in end-of-life care. “People don’t think about what to do until you’re actually faced with these situations.”

That's because many people “just don't know how to bring it up," she said.

One way, Beach said, is to use something happening in the news or with an acquaintance as a conversation-starter. Anything “so that it seems less threatening and not when either of you are under emotional stress,” she said.

Beach recommends downloading “5 Wishes,” a document crafted by the nonprofit Aging With Dignity. It’s basically a living will with a personalized touch — not bogged down with legalese.

“It’s very in-depth, so you feel more comfortable that you’re doing what your loved one would want,” she said.

For those who never get that far, Beach said, it’s important that they “don’t beat themselves up over it, because many people haven’t.” Then it’s time to find someone who can offer guidance, whether it’s a social worker, nurse, hospice worker, hospital chaplain or a familiar member of the clergy.

After a few such consultations, Gerri Eichele decided to take Billy off the ventilator.

“Because if he can’t breathe on his own, it’s God’s will that he passes away,” Gerri said.

A final goodbye

In the run-up to her decision, Gerri sat with Billy and said her goodbyes.

“I spent two days with him talking and singing and watching his favorite shows and showing him all the love I could give him,” she said. “And they took him off the ventilator and he breathed.”

Erin Scivoletti, a cousin who lives in Beachwood, relieved Gerri one day last week, just so she could go home and get changed.

“She’ll go three days without showering because she doesn’t want to leave his side,” Scivoletti said.

What kind of legacy does a well-lived life leave? Scivoletti works for Easterseals, a national nonprofit that helps people with disabilities.

“Billy inspired me,” she said. “I saw how he was, and that’s what made me commit to this career.”

Last year, as they shopped together in Toms River, Gerri and Billy were stopped by a man who recognized them.

“We have a son who has Down syndrome,” the man said, as recounted by Gerri. “It was always our hope that he could accomplish half of what Billy’s done.”

She welled up, telling that story. It means the world to her, but it didn't make this crossroads any easier.

“I know the end is near,” Gerri said.

The sun’s late-day rays started to beam through the window of Billy's hospital room. Gerri planned to spend the night, again.

She wasn’t going to let him down. She remained by his side until late Sunday, when he breathed his last.

Carino’s Corner appears Mondays in the Asbury Park Press. Contact Jerry at jcarino@gannettnj.com