Compassionate Care Ready To Help People with ALS And Their Families
By Brent Runyon
August 7, 2012
Compassionate Care ALS, the West Falmouth-based nonprofit organization that provides support and free medical equipment for people living with amyotrophic lateral sclerosis, commonly called Lou Gehrig’s disease, is expanding.
Since last September, the organization has hired five full-time employees, including an associate director, a social worker, and inventory manager, and two care coordinators.
The expansion is a major step for the organization, which was founded in 1998 by Ronald G. Hoffman with funds from Falmouth businessman and philanthropist Gordon T. Heald, who died of the disease. Mr. Hoffman was Mr. Heald’s caretaker during his illness.
The incurable and fatal neuromuscular disease progresses in different ways in different people. Rather than donating money to research efforts, Mr. Heald and Mr. Hoffman wanted to provide families with assistance to live as comfortably as possible as the disease progressed.
Since that time Mr. Hoffman has visited families, providing them with durable medical equipment such as scooters, wheelchairs, ramps and mechanical lifts, at no charge. Some of the equipment costs thousands of dollars, but the families do not even need to sign paperwork.
Mr. Hoffman visits an average of two families a day, seven days a week. He sees clients in Massachusetts and throughout New England, although some are as far away as Colorado and California, said associate director Evan C. Fairmont of West Falmouth.
In recent months, Massachusetts General Hospital has been referring newly-diagnosed patients to Compassionate Care ALS, resulting in more demand than ever for the services. Now with the addition of social worker Erin MacDonald and the other new staff members, the organization will be able to visit more families and provide help more efficiently, Mr. Fairmont said.
Last year, Compassionate Care ALS made 550 visits to people living with the disease and their families to provide guidance, emotional support and to deliver equipment. The organization also handled more than 1,000 phone consultations, Mr. Fairmont said. This year they are actively providing services to 297 families, 60 of those being new this year, he said.
They operate with a yearly budget of just under $1 million, he said. Most of that comes from individual donors and fundraisers throughout the year and a smaller percentage comes from grants, Mr. Fairmont said. Once of the main fundraisers this year is the New Balance Falmouth Road Race. The organization hopes to raise $300,000 this year with the help of supporters. Last year, there were over 100 runners on 31 teams that ran for the charity.
Another fundraising event is the second annual David’s Old Silver Swim, for David E. Garber of North Falmouth on August 18. Dr. Garber, 61, was a dentist on Jones Road in Falmouth until he was diagnosed with ALS. Registration is $35 and is available online through the Compassionate Care ALS website, www.ccals.org.
Another event, “Wear Blue, Bring Green” will take place next month at the Hotel Marlowe in Cambridge.
Through the expansion, the organization is maintaining the original vision that led to its success. Each family is treated as a unique case, and given as much care and support as they need, Mr. Fairmont said. “Our goal and our intention is to support the people living with ALS with dignity and peace,” Mr. Fairmont said.
“This started out from the belief that ALS is such a devastating diagnosis that the last thing that they need to worry about is the financial burden of buying medical equipment,” Mr. Fairmont said. “This is not something that they should have to worry about when they are dealing with someone who is dying,” he said.
Motorized scooters and wheelchairs are very expensive and it can take a long time to obtain equipment through insurance companies. “Sometimes a scooter might be very beneficial to them right now, but by the time you go through the paperwork and it gets processed, sometimes they wind up not needing it,” Mr. Fairmont said.
Each family’s needs are different, and the goal is to provide them with exactly what they need as quickly as possible.
The organization also has five handicapped-accessible vans that it loans to families. It can make a big difference, Mr. Fairmont said. “For many people, if they don’t have a wheelchair-accessible van it means they are confined to the house,” he said. The vans were used by 27 different families in 2011.
Beyond the free medical equipment, Compassionate Care ALS offers emotional support and resources for people who want spiritual care. The organization also hosts gatherings for caregivers and people living with ALS.
Mr. Fairmont also spends time with families himself. In the new few weeks he plans to take a Cotuit man living with ALS out for a beer and a round of pitch and putt golf, and cook dinner for another man who lives in Boston, so his wife can go out with her friends.
Dealing with people who are dying on such a personal level can be difficult, Mr. Fairmont said. “I would said it’s incredibly intense and there are days when someone I know personally passes away,” he said. “Death is something that is very real and in everybody’s life regardless of who you are. For me, being around it now, I think that it has made me perennially reflective now on my own mortality.”
New staff members received training in dealing with death through mindfulness. The training is an outgrowth of the work of longtime Woods Hole summer resident Jon Kabat-Zinn, who established the Center for Mindfulness at the University of Massachusetts Medical School in 1995. That program was itself an outgrowth of the Stress Reduction Clinic founded by Dr. Kabat-Zinn in 1979, which is one of the oldest and largest academic medical center-based stress reduction programs in the world.
“Really it’s about taking a deep breath and letting all of the stuff go while I’m there with this family and to really be present with them and to listen,” Mr. Fairmont said.
Mr. Fairmont is 24 and grew up in Boulder, Colorado. He met Mr. Hoffman about eight years ago and accepted an offer to come work for him last September. A former ski instructor in Vail, Colorado, Mr. Fairmont said his first winter on Cape Cod was very mild. He did some skiing around New England, and has also taken up kite surfing in his spare time.