Caring for You: He’s devoted to the Cape’s ALS patients
By Tracy Hampton
Ron Hoffman is the founder and executive director of Compassionate Care ALS, a nonprofit organization that helps patients and families affected by amyotrophic lateral sclerosis (ALS, also known as Lou Gehrig’s Disease), a progressive neurodegenerative disease that involves nerve cells in the brain and the spinal cord. He lives in Falmouth
Q. Why did you decide to start your organization?
A. When I was a caregiver for Gordon T. Heald, who was diagnosed with ALS in 1997, it became clear to us that there was a lack of support for people with ALS. A month before he passed, I proposed to Gordon and his wife, Betsy, that we create a fund to help provide that support. Seed money came from an announcement in Gordon’s obituary. For five years, I oversaw the Gordon T. Heald ALS Fund, and then I founded Compassionate Care ALS in 2003 so that we could expand services to patients and their families.
Q. What kinds of support do you offer?
A. We help families purchase equipment such as home ramps, shower chairs and other expensive items that often aren’t covered by insurance. We also own and loan families a wheelchair-accessible van. We help families navigate the complexities of the Medicare/Medicaid and insurance systems. We offer a lot of personal and emotional support as well. I like to say that we bring “counsel,” not “advice,” when we assist patients and families in coping with the challenges of living with ALS. There’s nothing more important than helping people live with dignity and quality of life.
Q. What are some of the struggles that patients with ALS face?
A. With ALS and other catastrophic illnesses, it’s often about finding the capacity to live life differently and have the ability to drop into the reality that you’re faced with: one’s ultimate death. ALS is a terminal illness that can manifest in different ways. One woman I’ve worked with has lived over 20 years, while a 27-year-old I know is progressing rapidly. It’s not the same progression for everyone. I try to frame the choices and possibilities that people have and to be respectful as we help navigate that terrain. Nothing should be pushed or projected onto anyone, ever.
Q. What challenges do you face in trying to satisfy the needs of patients and their families, which may conflict?
A. It’s tricky. I have to ask myself, “How do I honor the mother, father, son, daughter, spouse, or friend who is caring for a patient?” Their needs are equally as important as the patient’s. It takes a lot of deep listening and leaving my own baggage at the door. Not everyone wants the same thing, and it’s important to recognize and respect that.
Q. What do you enjoy most about your work?
A. I’ve been able to work with thousands of really amazing people. I’m continually touched by the extraordinary resiliency that people have in facing circumstances beyond what many people can understand. I tell my staff to never, ever say, “I know how you feel,” because we don’t know.
Editor’s Note: Caring for You is a monthly feature that highlights the work of Cape Codders who deliver health care without fanfare.