Caring for a loved one facing a serious illness and/or progressive decline can be an arduous task that takes both a physical and emotional toll on the caregiver. While the medical community’s focus is rightly on the patient, we can’t underestimate the needs of family caregivers who help their loved ones with daily activities, as well as medical and nursing tasks, and must deal with the often life-altering effects of the patient’s illness or injury. Whether for a few weeks or many years, caregiving can dramatically alter a family dynamic.
Sentara Martha Jefferson’s new Caregiver Support Program and Center will help caregivers get the support they need, inside the hospital and beyond. Sometimes this type of support can be as simple as encouraging a caregiver to step out of the patient’s hospital room for a few moments to take a break or eat a snack. Other times, support might include helping caregivers find community resources and support groups, or information about advance directives. Often, it’s lending an ear in a compassionate, nonjudgmental way.
With the nation’s changing demographics and aging population, and with families spread out more than ever across the country, caregiving has become a more significant role for family members, according to Margaret “Peggy” Firer Bishop, ANP-BC, ACHPN, the team coordinator and nurse practitioner with the hospital’s Palliative Care Team. “The current culture of caregiver burden is pretty different from what it was, say, 50 years ago,” says Bishop.
Part of the Caring Tradition
A program supporting caregivers in their journey is an expansion of Sentara Martha Jefferson’s Caring Tradition, according to Catherine Hughes, executive director of Support Services. The idea came about via a member of the Martha Jefferson Hospital Foundation Board of Directors who moved to the Charlottesville area from New York, home to the Ken Hamilton Caregivers Center at Northern Westchester Hospital. The New York program was conceived by Marian Hamilton, who spent two years caring for her husband, Ken, after he was diagnosed with lung cancer, while juggling her role as a mother to two teenage daughters.
After hearing about the New York program, Martha Jefferson Foundation board members quickly realized that a similar caregivers program would be a great match for Sentara Martha Jefferson. “It fits so seamlessly into the existing fabric of the hospital,” says Hughes. The Ken Hamilton Center has been such a success that the New York hospital now helps others replicate the program. Sentara Martha Jefferson now hosts the 16th such program in the country.
Getting the Caregiver Program Up and Running
Representatives from the Ken Hamilton Caregivers Center visited Sentara Martha Jefferson in summer 2018 to provide assistance and advice to help get the program off the ground. Following this visit, Hughes and Katy Kreienbaum, program coordinator for the Caregiver Support Program, traveled to the New York hospital for training.
A pilot program on Sentara Martha Jefferson’s Intensive Care Unit (ICU) earlier this year is helping to firm up processes, and soon the program will roll out to other units. The ICU was the perfect place to start, since ICU families already receive a great deal of supportive care in the hospital, according to chaplain Tammy Carter James, RN, MDiv. “ICU patients are often on a ventilator and unable to communicate, so we provide a lot of care to the families,” she notes. “The caregivers program will augment what we’re already doing—especially for the chaplains and case workers. There just aren’t enough of us to meet all the needs.”
Powered by Volunteers
Volunteers are the heart and soul of any caregiving program, and Kreienbaum has spent much of her time identifying and training new volunteers to work on the units. All potential volunteers will be evaluated to ensure that they have the necessary listening, problem-solving and empathic skills for their roles. As well, a thorough onboarding process will help equip volunteers with the skills they need to offer support for caregivers. Kreienbaum hopes eventually to have 30 highly trained volunteers.
The program should also help Sentara Martha Jefferson nurses, who truly desire to support family members but also need to focus on clinical care. “I’m hoping that the patient’s burden is relieved and nurses feel supported, and that we can act as an extra set of eyes, ears and a heart,” says Hughes. “Across the country, I can’t think of a hospital that couldn’t benefit from an extra set of trained, compassionate caregiver partners.”
“We have wonderful, caring, compassionate nurses here,” adds James. “They like to go above and beyond the call of duty, but their time is often limited. Sometimes they really have to focus on the patient’s physical needs, treatment and medication.”
The next step for the program is to create a dedicated space where caregivers can go for support and relaxation. A task force is currently evaluating concepts, designs and locations, and Hughes hopes the new Caregiver Support Center could become a reality by January 2020. For now, program volunteers are able to round on the units and, when needed, direct caregivers to each unit’s quiet room, where they can offer a moment of respite.
With the launch of the program this summer, staff throughout the hospital—including nurses and the concierges at the front desk—will be spreading the word about the program to caregivers who appear to be in need of support. Additionally, the program will offer support to caregivers even after a patient leaves the hospital. According to Kreienbaum, caregivers are welcome to return to the hospital for program-related services, and volunteers eventually will remain in touch with caregivers, primarily through a phone support system. Furthermore, any caregivers in the community can get support through the program, whether or not their loved ones are patients at the hospital.
The new Caregiver Support Program is made possible through the generosity of donors and is funded exclusively by philanthropy—just like the New York program. “We’re following that model,” says Kreienbaum, “and we’re grateful that the Martha Jefferson Hospital Foundation and our generous community are embracing it. I consider us blessed to live in this community of such caring and generous individuals.”
The hospital is the first in the Sentara network to implement a caregiver program, and Hughes hopes it eventually will expand to other hospitals in the Sentara network. In fact, she hopes most hospitals in the country will have similar programs within the next decade.
“I think having this program will let the community know we really care about our patients and their loved ones,” says James. “We’re providing care for the whole family, and we recognize how important that is. I hope the community feels the love, the care and the compassion we are extending by integrating this program at Sentara Martha Jefferson.”