Hospice Residence Hospital Library To Honor Newtown Native
By Nancy K. Crevier
Jeffrey B. White was a man of words. Some of the first words he penned for publication were as an employee of The Newtown Bee, where he worked as a reporter for his hometown paper in 1999 and 2000, following graduation from Boston College. His education continued with graduate work at Boston University in the prestigious Washington Journalism Center, and he subsequently went on to become a noted journalist, reporting on matters from politics and energy to military defense to human rights.
Mr White reported for the Washington bureau of The Wall Street Journal, served as correspondent for the Waterbury Republican-American, and held a position as staff reporter for the Patriot-Ledger in Boston. He worked as a foreign correspondent, moving to Prague in 2005. He wrote for the Christian Science Monitor, served as news editor of the Prague Post, and was published in The Washington Post, the American Lawyer, Legal Week, World Politics Review, and the international edition of Der Spiegel, among others, before he died at age 32, in June 2009.
So it is fitting, said his mother Dolores White, that she and her husband, Jim, have endowed the Jeffrey B. White Memorial Library at the Regional Hospice and Home Care of Western Connecticut in-patient residence in Danbury, scheduled to open in June or July 2014. Jeffrey White’s brother, Greg, is funding materials for the library, and Jeffrey’s longtime best friend and Regional Hospice board of directors vice chairman Paul Sirois will donate to furnish the library. The Whites envision the Jeffrey B. White Memorial Library to be a place of respite, where patients and caregivers can enjoy books, periodicals, papers, and Internet connectivity.
Founded in 1983, Regional Hospice and Home Care of Western Connecticut provides compassionate care for patients in their final days and support for family and caregivers. The agency promotes patient-focused care, education, resources, and advocacy, allowing people to die in a dignified and comfortable manner. Support services include skills for coping with loss and Healing Hearts, a center for grieving children and parents. More than 500 patients in the western Connecticut and neighboring New York towns receive services from Regional Hospice each year.
The Comforts Of Home
The new patient residence, to be located off of I-84 in Danbury, on Milestone Road, will accommodate 12 patients in private suites. Administrative offices, now located on Main Street in Danbury, and the Healing Hearts Center will also be housed in the new facility. In addition to the Jeffrey B. White Memorial Library, an onsite chapel, café, spa, and gardens are planned for the $10 million facility.
“Sometimes it is too difficult to manage end of life care at home,” said Jane Wilson, vice president of philanthropy at Regional Hospice, “but people still want the comforts of home.”
The residence will alleviate what is known as the “burdensome transitions,” the process that commonly occurs in the last three days of life, said Ms Wilson, when patients are transferred from home to hospital, then back to home or a nursing home. It is a psychological, as well as financial, burden for families and patients. While patients can be on hospice care up to six months, the agency anticipates that the average length of stay at the patient residence will be five days. It is expected that approximately 880 patients will be tended to by the professional hospice caregivers, trained to assist in the end of life stages, each year.
Cynthia Roy-Squitieri, president and CEO of Regional Hospice and Home Care of Western Connecticut, emphasized that the residence will take patients of all ages. People often think of hospice as being for the elderly, but many hospice patients are children, or like Jeffrey White, still very young when facing death.
“[This specialty facility] gives us the opportunity to have pediatric rooms and provide a place for children to die in a serene environment,” said Ms Roy-Squitieri. “Hospitals are not an appropriate place for anyone to die. Hospitals are for care and rehabilitation, and they do a good job at that. But care at end of life is specialized,” she said. Patients at the Regional Hospice and Home Care Residence will find a peaceful, quiet environment, with 24/7 nursing intervention available.
Jeffrey White spent from 2006 to 2009 traveling between his home in Europe and the United States for various treatments for the rare choroidal melanoma, diagnosed in 2006, that was killing him. He and his wife, Nicole Zimmermann White, returned to the United States from Berlin in June 2009, barely one week after their wedding, seeking final medical intervention. Doctors in Germany had given him just two weeks to live, said his mother, but he was hoping to find one last chance to survive the eye cancer that had spread to his liver, then his chest cavity, and vertebrae.
He had known by late 2008, she said, that despite the best medical care on both sides of the ocean, he would be fortunate to live another year.
“He had told me that when he got too sick he would come home. He wanted to die at home,” said Ms White, although he never quit fighting for another day of living — or writing. “Jeffrey actually filed his last story, lying in a hospital bed in Germany, with his head immobilized,” she said. “Jeffrey was one of those people who was meant to write. He had the heart of a poet and loved poetry. I think that writers see the world differently from other people,” Ms White said.
Doctors in Philadelphia were not able to give her son any more hope than had the doctors in Germany, so he returned to his parents’ home in Newtown.
“Jeffrey told me he didn’t want any visiting nurses or hospice,” said Ms White, a registered nurse. But she called her son’s friend, Mr Sirois. “I knew I would need help.” Mr Sirois assured her that the family could count on Hospice.
Her son’s decline was swift, she said, over the weekend that he came home. “I called Paul and told him things had gotten really bad. Linda Pinckney, who works at Kevin’s Community Center and is a Hospice nurse, came over. Hospice gave us everything we needed, even though we weren’t even officially admitted to hospice care until Monday morning, the day Jeffrey died. Because I’m a nurse, I could administer the medicines to Jeffrey; he didn’t even have to know Linda was there. But he knew, he knew,” recalled Ms White. “I think Linda was the last person he saw before he died.”
It is not the length of care, but the quality of the care provided by Hospice during desperate times that impressed the Whites. “It is their willingness to go beyond what they have to do. Hospice gives you the ability to facilitate an end to life with dignity and loving care. It’s what everyone should have,” Ms White said.
It was several months after Jeffrey White’s death before she was able to sit down and write to the local Hospice to thank its personnel for their support, a letter that over time has been referred to at various fundraisers for the agency.
“As we approach the first anniversary of the passing of our beloved son, Jeffrey White, on June 29, 2009, I’ve come to realize that there was a reason it took me this long to express our family’s deepest gratitude to your organization and the wonderful members who came to our aid so professionally, selflessly and caringly in our greatest hour of need,” wrote Ms White in a letter to Ms Roy-Squitieri, dated June 8, 2010. “Thanks to the personal attention and guidance of Paul [Sirois], and all those he enlisted to try and get things ready quietly, without alarm or stress to Jeff, we were able to set a plan in motion with the hope that between Friday afternoon and Monday morning things wouldn’t deteriorate too rapidly. However, that was not to be the case,” she continued. It was due to the willingness of Hospice personnel to aid her family on short notice, and to address her son’s issues with the proper medications and procedures that he experienced a peaceful end, she wrote, an effort that was “nothing short of a miracle…”
An Appropriate Gift
The Whites had been aware of the drive to create a patient residence for those in need of hospice care outside the home, Ms White said, through conversations with Mr Sirois. Following their son’s death, they began to inquire as to how they might participate.
“A couple of months ago, Paul told us that they would like to have a library in this new facility. Jeff was never happier than when he was in a bookstore, or had five or six books going at once. He was all about reading and writing. Paul told us, ‘If you are on board to do this, there are three ways to donate. One is for the naming rights to the library. The second was for the room itself. The third would be two smaller donations for the furnishings and materials.’ He said that if we were able to fund the room, Paul and his wife would donate to do the furnishings, because it would be Jeff’s library,” said Ms White.
Two weeks ago, the Whites presented Regional Hospice and Home Care of Western Connecticut with a check sufficient to fund the cost of building the library room. “We are thrilled and honored to commemorate Jeff in this way,” said Ms White.
“It’s a wonderful fit,” agreed Ms Wilson. “We’re delighted by the donation and touched by Dolores and Jim’s sentiment of wanting the library named for Jeff.”
The library will be a memorial to their son in more than name. The Whites are gathering pieces from Jeffrey White’s more poignant writings, said his mother, which will be compiled into a coffee table collection for the library.
“I know exactly what the first piece will be, and what the book will be called,” said Ms White.
A story that turned out to be eerily prophetic ten years after it was written, “Needing Help to Say Goodbye” was written while Jeffrey White was a reporter for The Newtown Bee, in response to the death of his good friend Maria Rodriguez in 1999.
“I remember reading it then and thinking ‘My God! My kid wrote this?’ It was so insightful and touching. It blew me away. Her parents told me it was the greatest gift, to have their daughter eulogized in print like that. It’s funny,” she said, “that we’ve come full circle now [with that story]. ‘Needing Help to Say Goodbye.’ That,” she said, “is what Hospice is.”
The Whites continue to support Regional Hospice and Home Care of Western Connecticut as the agency raises funds for the new inpatient facility. Ms White will offer brief remarks at a November 1 cocktail party at the home of Sandy and Walt Motyka in Newtown. Special guest, former Connecticut governor M. Jodi Rell, currently the campaign chairperson for the Regional Hospice patient residence, will also speak at the informational gathering. Inquiries about the event, one in a series of small gatherings designed to inform people about the residence, can be directed to Ms Wilson at 203-702-7414.
“It’s amazing how many people still don’t know [about this new Hospice facility],” Ms White said, “and we want people to know what a wonderful thing it will be.”
To donate, visit regionalhospicect.org, or mail checks to Regional Hospice and Home Care of Western Connecticut, 405 Main Street, Danbury CT 06810.