Ron Hoffman, 67, spent most of his life haunted by something from his childhood. When he was growing up in Richmond, VA, his father was an alcoholic and was abusive to his mother. One night, when Hoffman was 10, his father snapped and pointed a gun at his mother. Hoffman dove in front of her, and a bullet pierced his side and lodged at the base of his spine.
Hoffman calls it a “sacred bullet,” because being shot led to a moment he considers life-changing. When he was lying on a gurney at the door to the hospital, an orderly met him and put a hand on his shoulder. “I just felt the warmth and love of his hand,” Hoffman recalls. “And he just looked at me and said, ‘Ronnie, I’m here.’ It was a moment that I’ve never forgotten all my life. Someone was actually there for me,” he said.
Decades later, in the mid-1990s, Hoffman took a catering job on Cape Cod for a businessman named Gordon Heald. In the summer of 1997, Heald developed amyotrophic lateral sclerosis (ALS or Lou Gehrig’s Disease), a degenerative neurological condition that causes muscles to waste away and can leave a person unable to move, talk, and eat, and eventually unable to breathe. In most people, the brain stays sharp. Heald asked Hoffman to become his caregiver, and Hoffman turned out to be a compassionate caregiver and a friend to Heald. Heald died of ALS the next year and had donations in his memory sent to Hoffman for what ultimately became Compassionate Care ALS (CCALS).
How CCALS Helps People with ALS
Hoffman’s organization, CCALS, was launched in 2003 with just $35,000 in donations. Now it has a budget of more than $2.2 million. Hoffman has made it his mission to help others navigate the complexities of living and dying with ALS, including getting the overwhelming amount of equipment they’ll need.
For nearly 25 years, Hoffman has run a unique full-service operation, offering everything from wheelchairs and ramps to conversations about death to a shoulder to cry on. He loans out wheelchair-accessible vans, ramps, stair lifts and more, which are all among the items stored in his warehouse that is packed with equipment for ALS families. The items he offers are rarely covered by insurance. CCALS bought them with donations and grants. Those who can afford to pay the thousands of dollars it costs for a ramp system or stair lift to be installed at their home do pay; if they didn’t, Hoffman says, his organization would go broke. Aside from that, he doesn’t ask for a penny or even a signature. Paperwork is not his style.
Besides offering items to help patients and caregivers, Hoffman listens to family members vent. He guides them through the health insurance maze. Once he flew with a father who had ALS from New Jersey to his daughter’s college graduation in Illinois. “All I do is show up – such a basic thing, really,” he said. “It’s just being there.”
Originally, CCALS was based in a two-room cottage in Falmouth, with a staff of seven. Now he’s putting the finishing touches on a breathtaking $3.5 million retreat in a restored historic inn in West Falmouth, a seaside town on Cape Cod. It was five years in the making. It’s accessible for those with ALS but – with its koi pond, yoga room, beautiful gardens, proximity to the ocean and a bike path, and spaces for meditation and contemplation – a primary function is to allow ALS caregivers to rest and recharge. Many are “battered and bruised” by their caregiver roles, he said.
How Do People with ALS Get Help from Hoffman?
People with ALS hear about Hoffman through word of mouth or a doctor, such as Merit Cudkowicz, chief of neurology at Massachusetts General Hospital. “We refer probably 70-80% of our patients to him because he provides unique care in the home and he’s also been emotionally supporting our patients,” Cudkowicz says.
Since 2017, Ron’s organization has partnered with Massachusetts General Hospital’s ALS House Call Program. This initiative brings members of his staff, and doctors and nurses into the homes of ALS families. Ron’s organization has helped more than 1,800 people! He is gratified to be working directly with doctors, nurse practitioners, and nurses in the home, doing what he’s done for years. To him, this is a model of how health care can and should evolve in the coming years.
As mentioned, Ron also takes care of the caregivers. Faith Regan lost her husband, John, to ALS in 2014. She went through what many caregivers endure when someone they love becomes immobilized as a result of the disease. She was exhausted and felt like a failure. According to Regan, “(a)t some points you feel like, ‘I can’t take it anymore. And I’m a horrible person.’ But Ron Hoffman comes in and he says, ‘No. That’s the way ALS is. That’s what it does to families. And you’re doing the best you can. And we’re going to get through this together.'”
Asked if there’s a point at which he wonders how long he can continue taking on more “friends,” Hoffman responds: “Well, this is the path that I’ve chosen, consciously or unconsciously. It’s just what I do.” To learn more about Ron Hoffman and CCALs, visit their website here.
Things You Should Know if a Loved One Has ALS
Do you have a loved one with ALS? An ALS diagnosis can be devastating for both the patient and their family. If a loved one has recently been diagnosed with ALS, they’ll need your support now more than ever. Remember to be understanding and patient. These are some things to consider if someone close to you has been diagnosed with ALS:
- It’s not an immediate death sentence: While many ALS patients die within three to five years, others live for 10 or 15 years or more years after diagnosis. The late Stephen Hawking, for instance, was alive at the age of 75 after being diagnosed as a college student (he had ALS for 55 years before he passed away). As with any illness, focus on making memories and cherishing the time you have with your loved ones!
- Your loved one will need assistance: The amount of assistance your loved one will need will continue to grow as the disease progresses, but as the disease progresses, allow your loved one to keep as much of their independence as possible, for as long as possible. Similar to anyone with an illness, ask if they need help rather than assuming they can’t do things.
- They may experience uncontrolled bouts of laughter or crying: This is a phenomenon of ALS called pseudobulbar affect which is possibly caused by an interruption of brain signals in the upper neurons. It’s not connected to mood, so they are not laughing or crying because they are happy or sad. Pseudobulbar affect can be treated with medication.
- They are not affected mentally: ALS very rarely affects a person’s intellect. Over time they’ll lose the ability to speak but their cognitive functions remain untouched.
- They’re not deaf: There’s no need to shout. A person with ALS’s hearing will be as good as it was before they started experiencing symptoms of the disease. Although communication will pose problems, they will be able to process what you’re saying without you talking extra slowly or loudly.
- They’re still the same person: ALS may have changed their bodies and how they function, but it hasn’t changed their personalities. They’ll enjoy doing the same things, laughing at the same jokes, and even liking and disliking the same foods. They are the same person they always were.
Planning for a Loved One with a Degenerative Disease
If you have a loved one who suffers from ALS or another degenerative disease, it’s important to plan in advance. Persons with degenerative diseases, such as ALS, and their families face special legal and financial needs. At the Farr Law Firm, we are dedicated to easing the financial and emotional burden on those suffering from degenerative diseases and their loved ones. As Life Care Planning and Medicaid Planning Attorneys in Fairfax, Fredericksburg, Rockville, and DC, we help protect a family’s hard-earned assets while maintaining your loved one’s comfort, dignity, and quality of life by ensuring eligibility for critical government benefits such as Medicaid and Veterans Aid and Attendance. If your family is facing a diagnosis of ALS or any other degenerative disease, please call us as soon as possible to make an appointment for an initial consultation:
About Evan H Farr, CELA, CAP
