Josh Kennedy is surrounded by, left to right, Laura Steckino, Mary Lebozzo, Jeffrey Wood and Ernesta Kennedy.
Thirty-four-year old Josh Kennedy is dying. Two years ago the Iraq war veteran and father of three was diagnosed with the degenerative neurological disease ALS, also known as Lou Gehrig's disease.
Unable to walk by January of this year, Kennedy began using a motorized "power chair." By the summer, Josh's condition had deteriorated so much that his wife of nine years, Ernesta, gave up her job to care for him at their New Gloucester home.
Josh is now a virtual prisoner in his body: Ernesta and one or two other people can sometimes understand the barely audible groaning sounds he's able to make. Other than that, Josh's only means of communication is to move his eyes.
"Right now he uses a lot of facial gestures, like closing his eyes is 'Yes.' 'Nos' are pretty obvious," Ernesta says.
"What kind of coffee would you like? A k-cup or the Costa Rican?" she asks him. He responds with groans, which she translates: "Not now."
The Kennedys have a supportive family, and relatives have stepped up to the plate to help care for Josh. "My name is Ally Sampson and I'm Josh's younger sister. I come over here and help get their three little boys ready and off to school, get Josh up and help him get ready for his day."
Ally comes by for a couple of hours four mornings a week. But it's not just family members who are helping out: A caregiver network of 30 people has been established to help the Kennedys.
One of them is Laura Steckino, who manages the Starbucks in nearby Auburn, where Josh and his care attendent are regular customers. She became close to the family and visits their house with a colleague at least once a week to help out.
"We typically babysit on Tuesday nights. And we'll pick up the meal on Tuesdays before we babysit," Steckino says. "A local shop gives them a pizza every Tuesday night."
On days like today when Josh doesn't go to Starbucks, Laura will try and come by the house to visit, bringing with her Josh's favorite brew: "A quad venti white mocha, no whip, sometimes three shots sometimes four. So we'll ask him, 'Do you want three shots today or four shots. Ff his eyes get big we know he needs the four shots."
Josh's illness means he is unable to swallow more than a few sips at a time. Then he has to ingest via feeding tube. The man attaching the tube is a wiry, energetic 53-year old Army veteran, and he's more than just a personal care attendant. He's the reason why the Kennedys have a network of volunteer caregivers to call upon.
"My name is Jeffrey Wood. I am the founder and president of an organization called eHope." EHope was begun five years ago. According to its website, the non-profit's mission is "To form caregiving communities which provide non-medical, physical, social, emotional, and spiritual support, for a loved one who faces a life-threatening illness."
For Wood, the event that led him to create eHope occurred shortly after he and his wife moved into a new neighborhood in Westbrook more than 10 years ago.
"We looked out and we saw a neighbor who was pulling an oxygen canister up the driveway, 40 years old, and we just kind of quite literally reached across the hedge and engaged her, and asked if there was anything that we could do to help and to be good neighbors," Wood says.
His neighboor was suffering from terminal lung cancer. Wood and his wife engaged and mobilized members of the community to offer their help in anyway possible. Without the help provided by that caregiver network, Wood says the neighbor probably would have spent most of the remaining six months of her life in an institution such as a hospice rather than at home.
"Back then I really hadn't established the eHope model--this was just neighbor reaching to neighbor at this point," he says. "And I remember being frustrated as a former military man: 'Where is her squad?'--I remember asking myself that. Everyone has a squad, a group of 12 people that you don't just connect with on Facebook, that you connect with in a real way, day-to-day."
By approaching help groups, he found individuals and families in need. Then he would reach out at the grass roots level and look for volunteers from the neighborhood and from community groups like churches and rotary clubs. In this way, eHope has created close to 70 caring communities across central and southern Maine and into New Hampshire, drawing on some 2,500 volunteers.
Jeffrey Wood: "This is very much, first and foremost, a spiritual calling for me personally. EHope is not a religious organization, but look I'm just a guy with a very simple set of marching orders: I'm to love God with all my heart soul, mind and strength, and to love my neighbor, and hopefully to do so in a compelling way that compels others to simply reach out and love their neighbors as well."
Tom Porter: "There's no call to prayer or anything like that?"
Jeffrey Wood: "There could be but it's nothing that I personally bring to the mix. We're not bringing theology. Mine is a walk of application. The 'e' in eHope stands for eternal, but that's the hope that comes from relationship and community."
Back at the Kennedy's house in New Gloucester, about 10 volunteers come by the house every week, helping out with a range of chores, whether it's doing the vacuuming, the laundry, bringing food or looking after the three boys, ages 6,5, and 3.
Mary Lebozzo connected with the Kennedys through a nearby a church they both attend. She and her husband come on Thursday nights. They bring food, do housework, and most importantly look after the children, enabling Josh and and his wife to have some time alone.
"I think that this whole thing of practicing care and practicing loving one another is actually bringing kind of an explosion of life to all of us, a new quality of life that we've missed because we've gotten so detached from one another as a community," Lebozzo says. "So it's been really profound."
Perhaps the most important thing that eHope brings to the Kennedy household is that it gives Josh's wife Ernesta more time to focus on the task of preparing her three young children for what the year 2012 will bring. "They know that their daddy's dying, we've been very open with them," she says. "They know he's dying of ALS and they need security knowing that people will be here for them, and that I'm still going to be here for them when he's gone."
And when Josh is gone, the network of caregivers that the Kennedys have built up will still be there for Ernesta and the children, to help them through what will be a period of collective grieving.
To hear more from eHope founder Jeffrey Wood, who was recently honored by the Chaplaincy Institute of Maine--or ChIME--for his work in establishing networks of community caregivers, click the appropriate "Listen" button above.