Former Inn Becoming A Retreat For Patients With ALS

By ANDREA CARTER, June 22, 2017

Patricia W. Oakley said her husband, Douglas H. Oakley, had a dream before he died from amyotrophic lateral sclerosis four years ago: to have a retreat where families living with the disease could go for respite.

His wish and that of Compassionate Care ALS founder and director Ronald G. Hoffman is coming true in West Falmouth, thanks to a community effort.

“The dream is going to come true,” Ms. Oakley said. “It’s unbelievable. I know how much Doug wanted it.”

Construction of the Compassionate Care ALS Education and Retreat Center in West Falmouth, formerly Beach Rose Inn, began in November and Mr. Hoffman said the target finish date is by the end the year.

Mr. Oakley, who was a CCALS board member, and Mr. Hoffman talked about creating a place where ALS patients and their families and caregivers could go on vacation and have a reprieve at no cost to them.

“He shared the idea of what I wanted to do here with the retreat,” Mr. Hoffman said. “He was all in.”

Ralph W. Cataldo, owner of Cataldo Custom Builders in East Falmouth, is managing the construction and the budget. He and Mr. Oakley played hockey together and Mr. Cataldo remodeled Mr. Oakley’s home in Falmouth after his ALS diagnosis, helping to build access to a pond on the property.

Most of the work and supplies for the CCALS project are being donated by nearby businesses, Mr. Cataldo said. The Barnstable Sheriff’s Department has also provided a work force.

Three companies donated time to start the project with excavation services in November—Francisco Tavares Inc., Kevin Smoller Excavation and George Botelho Excavating—after Mike’s Tree Company in Sandwich cleared the area. Close to 23 companies have stepped up to the cause, Mr. Cataldo said.

“All these guys stepped up to help us,” Mr. Cataldo said. “They are all local Cape Cod companies that I have had relationships with my business.”

Mr. Cataldo is relying on community support because he is trying to do the approximately $2 million project for less than $1 million. This leaves enough funds to start up and maintain the facility with the remaining raised funds.

“We’re trying to get as much volunteer work and for people to work on this community project,” Mr. Cataldo said.

Currently he is looking for licensed contractors to donate time, such as plumbers, roofers and electricians.

Ms. Oakley said that ALS can strike the relatively young. Having a place where families can go on vacation and make lasting memories is significant.

Mr. Hoffman said that he and Mr. Oakley first approached the board with the idea in 2008.

“At the time [the board] was not ready for it,” Mr. Hoffman said. “Okay, we put it back on the shelf.”

The idea gained momentum again after Mr. Hoffman saw that the Beach Rose Inn, around the corner from CCALS’s main office where he had housed guests, was on the market.

He also received a visit from Ms. Oakley, who said that Mr. Oakley had designated $50,000 to the project if future finances allowed before he died.

“Their $50,000 was the catalyst to start the whole thing,” Mr. Hoffman said.

Mr. Hoffman then started fundraising, he said, in a non-institutional way. He sent out a letter describing the center and quickly raised $600,000. His team then put together a capital plan package and the organization has raised $2.7 million of the $3.5 million needed for the project.

“Families don’t have time to wait,” Mr. Hoffman said about starting the construction sooner than later.

The plan calls for renovating two buildings of the previous inn built in 1863 and rebuilding a cottage, which was torn down. Floors and walls are being torn out in the existing buildings. A carriage house is being taken apart and reconstructed. The main building is being gutted to reconfigure the space to make it accessible to wheelchairs and to update the building.

The project manager at the site is George Pimental; the architect is Denise Bonoli; the interior designer is Darlene Salatto-Rose; and the landscaper is Chris Lambton.

“This is a one-of-a-kind facility,” Mr. Cataldo said.

Mr. Hoffman said, to his knowledge, it is the first of its kind.

“It’s very much a sanctuary,” Mr. Hoffman said, “as well as a place for families to visit me here.”

The idea of a retreat follows the mission of the organization, which Mr. Hoffman founded in 1999 after being a caregiver for his first client, Gordon T. Heald, who had ALS.

For more than 20 years Mr. Hoffman has been a support to families nationwide and abroad. ALS is progressive neurodegenerative disease in which the muscles slowly weaken, leading to paralysis. The disease takes its toll on family and caregivers as well.

CCALS’s help to families navigating the disease includes explaining insurance coverage and lending equipment that patients need as their illness develops but that may not be covered by insurance, such as home ramps, bath and shower chairs, voice amplifiers and speech augmentation equipment. More than 600 families are currently in the CCALS network.

The organization also offers end-of-life support with a spiritual side, although it is not a hospice. Mr. Hoffman describes his role as walking side-by-side with families as they maneuver the disease’s path.

“Our work is about truly showing up for the individual, with physical, emotional and spiritual resources,” Mr. Hoffman said.

The organization’s services do what traditional medicine, constrained by insurance companies and billing, cannot do, he said, although he has built relationships with doctors and researchers in the field.

“The value of what we have brought to families has filtered into the powers that be,” Mr. Hoffman said.

The center will also have an educational component, offering a space that doctors and researchers can rent for conferences. Mr. Hoffman said some of the leading ALS doctors are in Massachusetts, affiliated with Boston hospitals.

In total, the site will have 13 bedrooms and space for 30 to 40 people for a conference. Landscaped gardens, a patio and a memorial wall will contribute a quiet and reflective quality to the site, Mr. Hoffman said.

“He is not around to see it. He was the catalyst,” Ms. Oakley said of her husband, “but I believe he is around for it.”

Contractors interested in helping with the project can contact Mr. Cataldo at his business at 508-548-1133.