Meet Ron Hoffman of Compassionate Care ALS

The BostonVoyager, May 15, 2018

Today we’d like to introduce you to Ron Hoffman.

Ron, can you briefly walk us through your story – how you started and how you got to where you are today.
Starting in the early 1990s, I began working part-time for Gordon Heald, who owned Wickertree Catering Company. In the spring of 1997, it became apparent something was amiss with him. The staff became worried, primarily because his speech seemed to be getting slurred and he was uneven on his feet. I approached his wife, Betsy, with our concerns, and she told me he had been diagnosed with ALS. I let her know that if there was anything I could do, please ask. A short time later, she asked if I would become his driver. He had been getting speeding tickets and the police officers thought he had been drinking. I said yes and Gordon said yes. Hence began my foray into the world of Lou Gehrig’s disease.

As Gordon’s needs become more demanding, Betsy asked if I’d like to become Gordon’s full-time caregiver. I accepted the offer, even though I had no professional experience in that role. I walked with both Gordon and Betsy along his ALS journey. A month before his passing, I approached Gordon and Betsy about forming the Gordon Heald ALS Fund. From this beginning, Compassionate Care ALS was born.

I felt there was something missing in the care picture for people with ALS. There was a quality of showing up, open and clear, and just being there for people that was missing. I wanted to take it away from the clinical and the mechanical. I wanted to make it human, and kind. I wanted to help people discover the gift that might be hidden in the tragedy.

Most of all, I wanted to invite a deep connection, heart to heart, soul to soul, that would allow the man or woman with ALS to deeply engage with what was going on. I wanted that same deep connection to be available to the caregiver, family members and friends. We all have to face mortality at some point. ALS can become a gateway to that awareness, and a profound opportunity to be real about life and death, and how we want to live into both.

Great, so let’s dig a little deeper into the story – has it been an easy path overall and if not, what were the challenges you’ve had to overcome?
It hasn’t always been smooth, but then, new approaches usually aren’t. When you try to offer something with real heart and soul, some people appreciate the invitation, others do not. Many times, in my early years, when I offered a deep connection, an intimate dialogue if you will, it was rejected. I’ve been pushed away. That can be painful, but I’ve learned to make the invitation and not be attached to the outcome. Those who accept the invitation, I work with closely. Those that don’t, I give them what I can, and allow my staff to step in.

One of the truly difficult challenges has been the response of the health care profession to our model. Many of the doctors, nurses and care providers don’t understand what we are doing, what is different about it and why that is important. I have tried to explain so many times why there needs to be more compassion in the caring professions. Often I am met with blank stares. What do you mean, more compassion? We’re taking care of others, isn’t that enough?

My answer is, well, maybe, it depends on how you are providing the care. Are you showing up with an open heart and a clear mind? Have you done your own inner work and grown comfortable with your mortality? Have you learned the art of listening without having to have the answers? Can you sit in the fire with another person who is in pain and bear witness without having to fix it?

If the answers are yes, then bravo, that’s some quality care you are providing. If not, then there is work to be done. Late last year I received a wonderful blessing, a real acknowledgment of our relational model, when we were invited to be a partner in Massachusetts General Hospital’s ALS House Call Program. This initiative, funded by the EGL Charitable Foundation, brings members of my staff, and doctors and nurses into the homes of ALS families. It’s like the old days when the doctor made house calls carrying his little black bag. I’m so gratified to be working directly with doctors, nurse practitioners and nurses in the home, doing what we’ve done for 20 years. To me, this is a model of how health care can and should evolve in the coming years.

Finally, one of the biggest challenges I face every day, is raising the funds to continue doing what we do. In addition to showing up in homes to help families grapple with the difficult questions, and help them navigate the complexities of living with ALS, we also provide a myriad of durable equipment often not covered by insurance. These are expensive and we provide them, usually at no charge. We also have a staff of eight to take care of. Fundraising is a constant challenge. So many worthy causes are competing for limited dollars. Luckily, our model is uniquely different, and has such a positive impact on the families we serve, they are often generous with their support of our work.

Compassionate Care ALS – what should we know? What do you guys do best? What sets you apart from the competition?
We provide holistic care for those living with ALS, their families, friends and communities. We provide a high degree of technical expertise with a sophisticated model of emotional support. We take the time to sit with our ALS friends and families, listen deeply to their concerns, and help them navigate the complex twists and turns of the journey. ALS is often a rapidly progressing disease that brings new challenges on a weekly basis. This can be overwhelming for people. Hopefully, we bring a calm, competent, caring presence into the situation. Ours is a relational model that puts the individual, and his or her experience, first. We make every effort to be humble, to hold questions without having to provide fast or easy answers. We hold the space for what wants and needs to emerge.

I would say what we’re known for is the degree of closeness we can share with our families. Many of the 1,800-plus families we have served have told us how much our involvement helped them. Really, really helped them, in a deep and personal and lasting way. Many of our families have said they don’t think they would have made it through without us. That’s very rewarding to hear.

After 20 years of being in the world of ALS, one of the things I’m most proud of is the ALS House Call Program with Mass General Hospital. This is an important collaboration that validates our relational model of personal care. The other big accomplishment I’m very pleased with is the building of our new education and retreat center on Cape Cod. To the best of my knowledge, this will be the first of its kind in America—a sanctuary, if you will, for those in the ALS community, be it patients, caregivers or healthcare providers. The construction of this facility is being led by Ralph Cataldo of Cataldo Builders, along with our architect, Denise Bonoli, with the support of local contractors, craftsmen and vendors, who are showing up to help the cause. It’s a wonderful expression of volunteerism and support from our community.

I’m also grateful that we have been gifted with a second office in downtown Boston on 21 Milk Street, by our friends at Columbia Care. This gives us a visible, central location where we can conduct meetings with our families, colleagues and partners in the city. Another major accomplishment of a few years ago was the completion of my memoir, Sacred Bullet, which has been very well received. It has helped hundreds of families understand the ALS journey and our model of tending to and caring for individuals navigating the complexities of living with ALS, and other serious illnesses. I will be releasing a second edition of the book in the near future.

Finally, I am proud of the many beautiful relationships that have unfolded. There’s nothing more profound or sacred than being invited to join an individual and family walking this difficult road. I am honored when invited to tend to and sit at a client’s bedside at the end of life. It is indeed one of the most profound experiences I have been blessed to be a part of.

What were you like growing up?
I think I was a pretty good kid, but I was also withdrawn, largely because of the violence in our home. My father was a dangerous man who hurt my mother and eventually shot both her and me. So…you know, that clouds a person’s childhood. You can read about all of that in my memoir, Sacred Bullet. Despite all of that, I loved sports. I was really into baseball, and had a bit of a golden glove. I also loved basketball. Time in nature was and is important to me as well. Those would be my main interests.

Contact Info:

Website: www.ccals.org
Phone: 508-524-2433 direct 508-444-6775 office
Other: www.WBUR.org/hereandnow/2017/10/12/advocate-ron-hoffman-als