Reaching out to Hospice ‘in the beginning’ of terminal illness
Julie Tencate was strong. She was independent, and capable. She loved to garden and to bake, and she loved people. But she loved her family most of all.
Julie first walked into Hospice of Warren County’s office in 2008 or 2009 to seek services for her husband, Ralph, her daughter Jamie Lindemuth said. The day she stepped through the door, said Jamie, Hospice became a part of their family. “She was so devoted to Ralph,” said Jamie. “He was the love of her life, that she found too late in life. They never had enough time, but she did love him, just so much.”
Julie also loved Hospice.
Based on the relationship that Julie developed with Ellen Scalise, a Hospice social worker, and based on the services that she received for her husband, Julie came back in January of 2016 when she herself was diagnosed with Amyotrophic Lateral Sclerosis (ALS).
Also called Lou Gehrig’s Disease, ALS is a condition in which muscles become gradually malnourished and, as a result, atrophy. ALS is a progressive disease, meaning that as it goes on muscles become more and more affected. There is no treatment for ALS, and those living with it will eventually lose control of all of the muscles involved in movement as well as the muscles responsible for autonomic functions such as breathing and swallowing.
“So many people come in too late,” said Vonnie Radecki, Hospice Bereavement Coordinator.
While her job focuses on services for a family after a death has occurred, she said the agency as a whole is best able to provide services when people come to them early in their end of life journey.
It’s about being able to build a rapport with a family, explained Scalise, whose job is to anticipate questions and be a liaison between a family and those services and agencies within the community and, beyond that, be helpful to a family’s unique needs in coping with the death of a loved one.
“It’s a hard time to have to make a decision,” explained Scalise, when a person is at the end stages of a terminal illness.
Jamie herself said that during her family’s involvement with Hospice for her mother’s end of life needs, Hospice was able to prepare them for the death and answer questions they as her mother’s caregivers had never thought to ask.
Dealing with medicare, helping coordinate things like obituaries and insurance claims, and even locating things like lift chairs and bathroom modifications for the family to borrow while they cared for Julie at home are some of the ways that Hospice was able to take the uncertainty and surprise of unanticipated needs out of the experience.
Over the course of a year, said Executive Director Lisa To, Julie and her family experienced a wide variety of the services available at the agency. Julie started for herself with HOWC on palliative care services.
Palliative care is available to patients at any stage of a terminal illness, explained To.
The goal of palliative care is to provide support and practical advice to patients and their families as they navigate The practical considerations of a terminal illness. Palliative care also includes symptom management and allows patients to develop a plan of care, which includes their goals. What a patient wants to have happen as an illness progresses is important to have hashed out and clearly communicated with all members of a their treatment team, To said. Patients in palliative care at Hospice are given support and frameworks to begin forming plans for the progression of their lives, as well as how they want to maintain the quality of whatever quantity of life is left.
Part of the reason that people tend to seek out Hospice services later than they could, Jamie believes, is because there’s a common misunderstanding that Hospice services are only for cancer patients.
People also aren’t aware, said To, that palliative care is available at any stage of a terminal illness.
“Some people are discharged from Hospice and don’t need further services,” explained To.
“Anyone can call anytime,” she said. “We can tell people what services they qualify for, and we can help get the official process rolling,” she said.
If people are unsure of whether or not they need or qualify for hospice services, or even if they’re just curious about what services HOWC offers, the agency encourages them to call or come in.
Throughout the course of her illness, Jamie said her mother lived with them for a while until, “physically,” her mother “was like a newborn.
“We were reaching the point where we had tapped the resources we had to be able to move her safely.”
Julie, “in the driver’s seat” throughout the course of her treatment as Jamie describes it, always said that she didn’t want to go to the Hospice residence until it was the end.
“Does this mean it’s the end,” Scalise said Julie asked when she was making the decision to transition to the residence. “I don’t want it to be the end.”
That acknowledgment, said Scalise, that Julie was reaching the end of her life, was difficult for everyone to make, including the staff.
“She was going to miss seeing her grandchildren, hearing them getting ready in the morning,” explained Jamie. But she also knew when it was time to transition, and the whole family was able to make that change with the support of hospice staff.
Because they’d had plenty of time to get to know one another, said Jamie, the relationship by the time her mother went to the Hospice residence was strong.
“They became our family,” said Jamie. And while the switch into the residence meant acknowledging that they were at the end of the journey, and even though that fact was sad, the residence itself wasn’t. “There’s so much love and so much life there that the staff shared with us and our family,” said Jamie. Jamie’s children visited regularly, she said, and there was always laughter during the visits. “There was never a visit that didn’t end in a hug,” she said.
Knowing that the quantity of her mother’s life was dwindling, she said, they’d taken care to pack as much quality into the year they had with her as possible. “It was only a year,” said Jamie, “but in that year, we lived.”
Jamie and her family took Julie on a cruise during the year leading up to her going to the residence, and even went to the Outer Banks in North Carolina, where they took Julie parasailing.
“We had to move her onto the boat, we got her into the harness,” she said, laughing through tears. “But she did it. She went parasailing.”
Liz Mitchell, also a Hospice social worker, said that part of the reason Hospice and Julie’s family were able to develop such a close partnership and work so well together was that Jamie and her family did such a good job taking care of her mother at home. “You guys did an awesome job,” said Mitchell.
It was easy, she said, to support a family when they were doing so well at the caretaking role.
After her mother went into the residence, Jamie said there would be nights when she’d get home from work and spend well over an hour on the phone with a residence nurse. “It was talking about mom,” she said, but it was also just talking about life. One of the things she realized through those late night conversations, and through the involvement of the staff, was that hospice is not just a nine-to-five job. The social workers, the nurses, said Jamie, “everyone would drop what they were doing and be there if they were needed,” she said. “It was amazing.”
Even her children received support and bereavement services from Hospice after her mother passed, on Feb. 26 of this year.
“It’s hard for the kids to understand what they’re seeing,” said Scalise. Especially when a person is being cared for at home, being so close to the end of life journey leaves kids needing answers and support just as much as the adult caregivers. And, she said, the staff who worked with her mother always found a way to make a connection with her. For a grown woman, she said, being bathed and fed, helped in the bathroom and moved around the house can be difficult. “They made sure that her dignity was always first and foremost,” said Jamie. And her mother, an independent woman who modeled strength and integrity for her daughter above all, appreciated that, said Jamie.
“They saw us at our best and they saw us at our worst,” Jamie said. And they were available and compassionate throughout the process, she added. “They were my support group.” And, while it was difficult for her to return to the HOWC offices to talk about her mother’s hospice experience, she said that she’d do it a million times over. Her goal, she said, is to let other families know that HOWC is a resource that is open to them and worth investigating when a loved one is living with a terminal illness. “Once you receive the support that we received, it’s so easy to say ‘what can I do to help other families.'”
“The beginning (of a terminal illness) is the easy part,” said Jamie. “Reach out for help in the beginning, because it only gets harder. What we were able to do with their help was prepare, and be prepared. It allowed us to grieve at the end, rather than shuffling paperwork.”