It was during the holidays of 2013, as Linda Parker and Ricardo Accorsi were sailing to Florida, that they realized something was wrong.
Accorsi was losing mobility in his arms. He was becoming weaker. The couple went to see a doctor and couldn’t fathom what they heard: Accorsi might have amyotrophic lateral sclerosis, often referred to as Lou Gehrig’s disease.
“We didn’t believe it at the time, we thought it had to do with his neck problems that he had before,” Parker said.
But a few months later, Accorsi was diagnosed with the progressive disease that affects nerve cells in the brain and the spinal cord. Over time, it robs the body of its ability to function, leads to paralysis and eventually death. There is no known cure.
“So we didn’t know what to do,” Parker said.
They knew they had to give up the sailboat, but where to go?
Accorsi awoke one morning and uttered a single word: “Hawaii.”
It was then they decided to move to Kauai. Accorsi’s condition, however, worsened. Knowing her fiance needed her at his side, Parker spoke with individuals at hospice and soon found their saving grace.
“They were telling us about Share the Care,” she said. “I didn’t even know Share the Care existed.”
The nonprofit’s mission is to “improve the quality of life for anyone who needs support and to reduce stress, depression, isolation and economic hardship of their caregivers.” The organization is in the U.S. and several countries across the world.
Although Share the Care is a project of the Hospice Organization, its volunteers don’t only work with hospice patients, but expand their care to anyone in need of it.
“It’s a really beautiful service,” said Parker. “I think it’s fabulous. Never having been in this position before, being a primary caregiver for someone, and I’m sure it’s different for different illnesses, but it’s intense. I’ve always heard it can be very draining and very intense, but it’s true.”
Parker met with Deborah Duda, Share the Care coordinator for Kauai.
“We try and organize family, friends relatives, co-workers into a caring team and the purpose of Share the Care is to help alleviate caregiver burn-out,” said Duda. “People tend to forget about themselves.”
After speaking with Duda, Parker and Accorsi were matched with volunteer Kalani Walthers. Walthers has not only been an enormous help to the couple, but has also become a dear friend.
“He’s amazing, he’s helped us with so much more than just the groceries,” Parker said. “One day I had to go to a doctor’s appointment so I couldn’t send someone else to do that for me, and he stayed with Ricardo and, unbeknownst to me, what he did with that time when Kalani was there, was he wrote my parents a note asking for my hand in marriage and Kalani helped him because his arms are so weak.”
Walther also wrote a note to Parker’s parents about the couple’s strength against adversity and has remained dedicated to helping them.
“They are wonderful people,” said Walthers. “They’re madly in love with each other and that’s one of the things that’s fun to be around. Over time, we have become friends because they are such sweet people.”
Walthers is a coordinator for Share the Care and is responsible for finding volunteers for the North Shore area.
“I think it gives people a wonderful opportunity to give back to the community and to help people when they need it most,” said Walthers. “I think it’s important to be able to help other people who need your help.”
One of these volunteers is Mary Ann Nordwall, who joined Share the Care when it began on Kauai about two years ago.
“It’s great, it’s really good, I think I get more out of it then I put in,” Nordwall said. “You develop a lot of friendships because you’re there with them, and because they’ve been through a lot.”
Nordwall’s joy comes from working with people she would never have met had it not been for Share the Care.
Nordwall relieves caregivers in the Lawai region and has helped many elderly individuals. She has also worked with an individual who is a paraplegic and a 93-year-old woman with whom she has become a close friend.
“One patient is 91 years old and her daughter is her caregiver. I sit with her a couple of weeks to give her daughter a break,” Nordwall said. “I just make sure she doesn’t hurt herself when she gets up.”
Nordwall plans to stick with the program.
“I think there’s a lot of people who could use help,” she said. “I think not everyone understands that there’s help out there that’s not going to cost them.”
Parker said more people should know about Share the Care.
“It’s really beautiful that there’s an organization that’s there to support the caregivers,” she said. “Without them, we would have been pretty stuck, but they’re enabling us to do what we want to do the way we wanted to do it.”
Parker and Accorsi have no intention of giving up.
“Even though Ricardo has this disease, and if you talk to Western medicine, they’ll say it’s incurable, but we’re not treating it that way,” Parker said.
“We came here on a healing journey, not for him to get worse and pass, which would be the normal prognosis for someone with his diagnosis. We came here for a reason and we’ve met beautiful, beautiful people so far.”