Updated: Aug 17
Where Everyone is Family - the Zambarano Experience
by Don Drake, Connelly Law Offices, Ltd.
To call the last couple of years at Zambarano Hospital in Burrillville, Rhode Island tumultuous would be an understatement. Administration changes, allegations of financial improprieties, ignoring needed repairs, and threats to close the unit entirely were just a few of the issues making headlines in Rhode Island media.
This chaos created a blanket of uncertainty that covered the campus, leaving patients and their families wondering about the fate of their loved ones and staff having concerns about their own future and how they would continue to provide for their families. Added to this mix was the pandemic, which affected everyone involved, and the normal operations of the hospital due to state health department regulations.
"Through all the political turmoil that centered around Zambarano Hospital and the emergence of COVID, one thing remained constant -- a caring staff that came to work every day with a smile and the welfare of each and every resident at that hospital being their number one concern," said certified elder law Attorney RJ Connelly III. "As newspaper stories spread doom and gloom about the fate of the hospital and with the virus wreaking havoc across the country, the staff there stayed optimistic, and by doing so, gave families and their loved ones the hope and strength to carry on. During my conversations with those at Zambarano during this time, I was often reminded of this quote by Helen Keller, 'No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit.' They never wavered when it came to the mission they were tasked to complete."
"No pessimist ever discovered the secret of the stars, or sailed to an uncharted land, or opened a new doorway for the human spirit." ---Helen Keller
Thankfully, things are beginning to return to normality again, thanks to those at the hospital. "This past Sunday, after two and a half years, Family Day returned to Zambarano," said Attorney Connelly. "Staff were once again able to celebrate the residents and their families and provide support to those who look towards them during their darkest hours for answers and hope. And make no mistake, it could not have been a more beautiful day, both in weather and in spirit."
Before we discuss this event further, let's take a brief look at the history of this grand institution.
A Quick History of Zambarano
In the late 1800s, TB was running rampant in the United States and the world (Note: Tuberculosis (TB) is caused by a bacterium called Mycobacterium tuberculosis, which not only attacks the lungs but other body parts as well). By 1900, health records indicated that the death rate for white Americans was somewhere around two hundred per 100,000, and among black Americans, it was double that number, four hundred per 100,000. It was clear that something needed to be done and that something was the sanitorium movement.
Sanatoriums began to appear throughout Europe in the mid-19th century, and in 1885, the first sanatorium in the United States opened in Saranac Lake, New York by an American Doctor, Edward Trudeau, who was afflicted with the disease. As the sanatorium movement took root, ‘fresh-air” hospitals opened throughout the country, including Colorado, Massachusetts, Maryland, North Carolina, and Rhode Island where medical officials, following the science of the time, accepted that fresh air treatment was ethical and supported by research, and built their own sanatorium on 250 acres of land located next to Wallum Lake which became Zambarano Hospital.
By the 1970s, a new era had begun in this country with the closing of large hospitals and institutions and returning individuals to the community, either through independent living, group homes, or smaller apartment settings with supportive services. This became known as the deinstitutionalization movement. Although the movement drastically reduced the population at Zambarano, it did manage to survive. Where does Zambarano stand today? For that answer, we turned to the retired medical director of the facility, Dr. Normand L. Decelles, some months ago.
In a letter he wrote to state officials, Dr. Decelles cited the importance of keeping the hospital open, pointing out how it met the needs of those who are not able to obtain care at other medical facilities.
“Zambarano’s census has declined to 85 individuals, average age upper 40s, with permanently life-altering medical and physical conditions such as traumatic brain injuries from gunshot wounds or accidents, spinal cord injury, neurodegenerative diseases such as end-stage multiple sclerosis and Huntington’s chorea, anorexic brain injury due to opioid overdoes, quadriplegia, dementia with aggressive or self-injurious behaviors, patients requiring inserted devices long-term (tracheostomy, nephrostomy, supra-pubic tubes, central and peripheral venous catheters, etc.) and more. Zambarano is also a referral/provider of advanced wound care for patients with debilitating pressure ulcers acquired in other facilities.”
And, wrote Dr. Decelles in summation, “most patients do not have the physical or cognitive capacity to self-preserve or self-advocate.” Understanding this is to understand why Zambarano is needed in Rhode Island.
Family Day is Back
Why is family day so important? According to one staff member who was elated to see it return, it may be one of the most notable events that the hospital sponsors. "A brain or spinal cord injury is like throwing a stone into Lake Wallum," she explained. "The ripple that expands represents how this affects partners, family members, friends, and the community itself. There will be forever changes in these relationships, some of which may become stronger, and others that might never recover, which is why being there to offer support is so very important."
"In some cases, family members can experience more distress than the person who was injured or acquired the brain injury, and this massive disruption in a relatively stable lifestyle can have a profound impact for years, perhaps even a lifetime," she continued. "It's essential to have events like this to reaffirm that family involvement in the process of recovery is paramount and that they too are a part of this process. Recovery is a marathon, and each stage will bring with it hope and joy as well as challenges and heartbreaks."
For many parents of loved ones in care, the staff becomes extensions of their family. In a blog we did last year, Shirley Pacheco, whose son is a patient at Zambarano, agrees that staff will always be a part of her life. “My son has been a resident there for 26 years after suffering a traumatic brain injury due to an automobile accident. The care that he receives at Zam is exceptional. I know of no other facility that offers its residents the care given there. It is like one big family, where everyone is treated with respect and love. I don't think my son would have survived if it weren't for the care and attention he has received from the dedicated personnel at Zam.”
"I don't think my son would have survived if it weren't for the care and attention he has received from the dedicated personnel at Zam." ---Shirley Pacheco
Another family member, who wanted to remain anonymous, told of their daughter being sent to Zambarano about a decade ago, also following an automobile accident. "When we got the call from the hospital about my daughter being in an accident and having a severe head injury, I went numb," she said. "When we arrived at the emergency room, [my daughter] was hooked up to tubes and wires. We talked to her but there was no answer, but we knew she was in there someplace. At least that was our hope." After being transferred to Zambarano her anxiety began to skyrocket.
"This next step in her rehab process was even scarier for me. There were so many unknowns. The first night after the transfer, I couldn't sleep when I went home, and this continued for days. One night, I sat in her bedroom, looked at all her things on the shelf, and just broke down crying. When I went to visit her, fearful of what was next, the nurse on duty came to me and said, '[your daughter] is in the best care here. We try to touch the soul of each person here so that they will come back to us.' I knew then that my child was in the right place and a sense of relief came over me. We also knew it would be a long and difficult road but hearing those words from someone who didn't even know our daughter at the time gave us the hope we needed to keep going."
As this family found out, recovering from a brain injury has difficulties which can be frustrating. "The patience that we needed as a family was draining, but the staff at Zambarano offered us their support every step of the way. Today, she's walking and talking, able to eat on her own, but there are lingering challenges and there always will be. She is a different person today than the girl who was in the accident years ago. But she is with us and every new milestone she hits is special. What the staff at Zambarano did for her and for us as a family is hard to adequately and appropriately put into words."
Working The Miracle
The staff at Zambarano ticks like a fine-tuned clock, with each moving part working in unison with the goal of reaching the highest level of effectiveness. Before a resident arrives, staff begin the process of putting together a treatment plan. Medical professionals assess health needs. Physical therapists begin to plan range of motion exercises designed to stave off lung and circulatory problems. Occupational therapists help with swallowing and as rehab progresses focus on fine motor skills and cognitive rehabilitation work. Speech therapists start working with the residents as soon as they begin waking up. Recreational therapists develop, direct, and coordinate recreation-based treatment programs to help maintain the physical, mental, and emotional well-being of the residents. Those who provide direct care learn everything they can about the new resident and how best to meet their needs. And each person involved with the resident and the family stresses the importance of getting to know as much as possible about the individual's life prior to the injury.
"I want to know the person who I am meeting for the first time," one recreational therapist told me. "I want to know what they were like before this happened, what their interests were, how they liked to dress and wear their hair. What they did for fun and how they communicated with others. I also want to know the family, and the dynamics present within the unit. All this helps me gauge stress levels for all concerned and makes me more effective as a provider and support for the resident and the family."
But what about those who will not be able to return home, who may end up being either partially or totally dependent and need lifelong care? "Thankfully, there are only a few residents who fit into this category," a staff member told me. "In this field, we continue to make progress in improving outcomes, but there is still so much to learn, and that knowledge changes all the time. In these cases, we try to be as supportive as we can, no one wants to be told that their loved one will never walk or speak again. What's the point of stripping family members of hope, especially when it's early in the case when no one knows what the outcome will be? We can't see the future, no one can, so until we have a better idea of where things are going, faith needs to remain alive. We need Zambarano Hospital for these special cases, they deserve to be cared for with the same zest and vigor as those who will be able to leave someday."
In 2016, Amy was living independently in an apartment complex in North Providence, Rhode Island. Diagnosed with a seizure disorder at an early age because of encephalitis, she was on anti-seizure medications for life. Unfortunately, Amy had a habit of skipping doses resulting in seizure episodes which she recovered from with no lasting effects. However, on one occasion, things were different. Amy had a seizure, fell to the floor striking her head, and stopped breathing. She was found by her daughter who called 911 for help. Paramedics were able to get her breathing started but she had gone for a significant period without oxygen, resulting in an acquired brain injury.
She was transported to Fatima Hospital for treatment where she remained in a coma for weeks. One of the parts of her brain affected was the one with the regulated temperature. Throughout her ordeal in the emergency room and later in intensive care, her body temperature had to be regulated through special devices that cooled her as her temperature rose to dangerous levels and warmed her when her body became too cool to keep her organs functioning. She was an extremely sick woman.
Several weeks later, Amy was stable enough to be transferred from Fatima to the Eleanor Slater Hospital in Cranston where staff worked to keep her comfortable while waiting for her to emerge from her coma. Eventually, she began to wake up but was unable to move, talk, or eat on her own and needed assistance to breathe from a ventilator. Then the team at Slater took over, after months of medical support, the ventilator and eating tubes were removed and she began the arduous task of rehabilitation. She was then transferred to the Zambarano Hospital unit.
Today, years after the incident that robbed her of her independent lifestyle, she has regained much of her ability to speak, albeit slower, and is learning to walk again with the assistance of walkers and other devices. There is still a long road ahead for Amy with many unknowns, but with the support of the staff at Zambarano, she continues to move forward.
She has progressed so much that she voiced her support for the staff and the care she receives in a video (see below) prior to a hearing at the Rhode Island State House. What you see below in the video is what can happen when you have a dedicated and caring staff who supports residents and their families. She has now become an advocate for the importance of keeping Zambarano Hospital available for those with needs like hers.
"So many times, we take for granted the role that staff play with the rehabilitation of brain-injured patients and their families," said Attorney Connelly. "In my experience, the work that I have witnessed at Zambarano has had a significantly positive impact on each and every person receiving services there. For family members who have a loved one in their care, this is an unplanned journey for them, a terrain they must navigate, one filled with experiences they never imagined they would face. But the staff provides them with the support and training necessary to adapt to these changes as well as preparing them for the stress and challenges that will lie ahead. They are incredibly special people."
Thank you everyone at Zambarano Hospital for all you do!