Going the Distance in Memory of Friends and My Mother

by Sarah Gowin

It wasn’t until I sat down to write this piece that I realized how difficult the last couple of years have been. Five people I loved died. I couldn’t have made it through without the help of Hospicare.

In the summer of 2021, two of my friends were dying. Karin Montin was from Montreal. Our families have summer homes in Sandy Cove, Nova Scotia, and we met on the Bay of Fundy beach when I was nine. In 2019, she was diagnosed with the first of two forms of breast cancer.  Because of the pandemic, I couldn’t cross the border to visit her. She died on August 9, 2021. I have fifty years of letters from her which I haven’t been able to bear to start to read.

Zoe Cookson-Montin, Jim Cookson, Karin Montin, and Erik C-M in Montreal.

Another friend was also my neighbor. We walked together every other day for years. She was diagnosed with stage four pancreatic cancer in March 2021. She was a recent widow and had just started adjusting to living alone. My husband Paul and I really miss her and her partner. My friend and walking partner died on August 7, 2021.

When I realized that my friends were going to die at about the same time, I felt overwhelmed. I contacted Laura Ward, manager of psychosocial services and a bereavement counselor at Hospicare. I was eligible for grief counseling, free of charge. The counseling helped me get my feet back on the ground. Laura helped me with my grief, and also helped me learn how to support others who were grieving.  

That Autumn, my first cousin Elizabeth Bancroft was diagnosed with lung cancer. Elizabeth, her sister Mary-McLean, my brother Robin, and I inherited the Nova Scotia property that our grandparents bought in the 1920s. The four of us managed one Zoom conversation to talk about our childhood memories. Elizabeth died July 3, 2022. Mary-McLean is the surviving member of her family of four.

Mary-McLean Bancroft Jones and Elizabeth Bancroft.

Also that Autumn, our daughter-in-law’s father Jim Carlson started to decline. He had been in a memory care assisted living facility for about a year because of vascular dementia. He died on September 27, 2022.  Paul and I were very sad to lose our co-grandparent, but most difficult was feeling for Jim’s wife Harriet, daughter Erica, son-in-law Josh, and our two grandchildren.  

Paul Stearns, Harriet Carlson, Jim Carlson, and Sarah Gowin at the Hot Chocolate Run for Safe Passage.

During my months of working with Laura Ward, she often asked me about my mother DG, who was in her nineties, and had lived at Bridges Cornell Heights for almost seven years. Her dementia was worsening, so there were always small losses as I adjusted to her decline. In late December 2022, when DG was 93, her physician Dr. Lucia Jander referred DG to Hospicare.  We were unbelievably fortunate that Dr. Jander is also the medical director of Hospicare, so the transition was seamless.  DG already trusted Dr. Jander, so even when she didn’t remember what hospice was, I could tell her that Dr. Jander sent a nurse or an aide, or a new medication, and DG would accept it. Thankfully, DG had already signed a MOLST, so her wishes for end-of-life treatment were already documented.  

DG had first-rate care from Hospicare until she died on April 1, 2023. The Hospicare team was also there to support me. I had no idea the breadth of the hospice services until the nurse, Fran, did the initial intake with DG and me. Within the next couple of days, I was contacted by at least six people from our hospice team. Valentina scheduled the aide, Meg, who came to DG’s house at Bridges three mornings a week for an hour to get her up and clean — often a Herculean task.  Wendy scheduled the volunteer, Monica, who visited DG regularly, and also got to know the other residents, and spent time with all of them sparking lively conversations.  The spiritual counselor, Edie, had wonderful talks with DG about the glass Celtic crosses hanging in her windows, and about her beliefs. This was a great comfort to me. I was able to communicate directly with the social worker, Edna, who made several suggestions that relieved DG’s anxiety and pain.  In the final weeks, the nurse Jessica played a key role.

Derry Bancroft, DG Bancroft-Gowin, and Emma Strowig in Sandy Cove, Nova Scotia.

I was so glad that DG had months of hospice care, because she grew comfortable with the people who were helping her. We were also extremely fortunate that everyone at Bridges knew DG so well, and they made it possible for her to stay in her own room, which is what she always wanted. She talked about loving her big beautiful windows until the day she died.  

When my mother was referred to Hospicare, I went back to talk with Laura Ward as pre-bereavement. Because she already knew a lot about DG, I didn’t have to start at the beginning, but Laura already knew about the complexities.  

I had some strengths in caring for my mother. I could be her advocate, communicate with family and friends, help her clarify her memories, and interpret for her when her speech became hard to understand.  I could hold her hand and look into her eyes.  Stacy at Bridges taught me how to adjust her hospital bed.  But I was very uncomfortable doing any further personal care, and the people at Bridges and Hospicare took care of that.

I made regular donations to Hospicare, because I had a sense of the number of staff hours that were devoted to DG’s care.  As part of the 2023 Women Swimmin’ fundraiser, I will do Go the Distance, and knit items which I’ll donate to not-for-profit fundraisers. When enough time has passed, I plan to do the Hospicare training to become a volunteer. I’m so grateful that Hospicare has been here for 40 years, and I am counting on it being around for the next 40.

Chapter excerpt from “Getting Personal” from my memoir, Fanning the Flames: The Making of (a) Firebrand

by Nancy K. Bereano

Hospicare and Palliative Care of Tompkins County tries to meet the medical, emotional, and spiritual needs of its patients and their families, embracing the fullness of life as its clients move toward the inevitability of their deaths. The facility is located in a beautiful country setting a half mile off one of the county’s main roads, a handsome structure expanded several times since it was built in 1995, the first free-standing hospice residence in New York State. The six private patient rooms look out on volunteer-tended gardens and walkways, a pond with reappearing seasonal waterfowl, and stone-paved meditation paths. There is administrative office space and an airy public front room spacious enough to easily hold a grand piano, a large table for impromptu meetings and holiday celebrations, comfortable couches, and a small library with books available to residents, staff, and visitors alike.

Nancy K. Bereano, founding editor and publisher of Firebrand Books, shares her experiences as a Hospicare Volunteer in her chapter excerpt from “Getting Personal” from my memoir, Fanning the Flames: The Making of (a) Firebrand.

I was nervous when I applied and was accepted as a Hospicare volunteer. I didn’t know the details of what I would be asked to do, what would be expected of me. As it turned out, the training sessions (two full weekends and several lectures) were more of a way for new volunteers to learn about the institution, the regulations (city, state, and federal) within which we would be working, the organization’s culture, time expectations, and an opportunity to engage various members of the staff.

Volunteers sign up for four-six hours of work per week from an extensive list of possible assignments. Cooking for one or all of those in the residence, one-on-one visits with patients, providing relief for caretakers, running errands, and, much to my surprise, at the time I volunteered there was a recently instituted oral history project—recording the stories of Hospicare clients for their families. This seemed made for me. I had loved getting to know details about my authors’ lives as we worked together on their manuscripts. It often added layers of meaning to their words. Since none of what I was now signing on to do was for publication, only for the memories and comfort of the dying person’s family, it required, more than anything, someone who was a good listener and an insightful questioner. I thought that my work at Firebrand made me well-suited for this. Little did I know that I would meet, work with, befriend, and several times be welcomed into the families of some remarkable people. Almost all of the Hospicare clients were surprised at their families’ desire to have a personal history undertaken since, almost to a person, they thought there was nothing particularly special to tell. My takeaway was quite different: While it was true that no one was famous, each of them was unique, and as they approached the end of their life, it was often difficult to get them to reflect on what they had done, what had been important to them. But there were times when my emotional involvement was strikingly similar to what I had experienced working with an author.  

 I spent time with some two dozen people over the course of my three-plus years of personal history volunteering. Most of that took place in their homes, which added an additional level of getting to know them. No marathon editing sessions as with authors. Usually only a half hour at a time of working together, conserving their limited strength. Each meeting with a new person was like receiving a manuscript in the mail: I wasn’t quite sure what I would find when I opened the package/knocked on the door.

I remember the stay-at-home housewife who wistfully conjured up dancing to the music of one of the visiting big bands in Kansas City when she was still a teenager; and the farmer who talked about meeting Eleanor Roosevelt at a union organizing event in New York City when he hadn’t yet “settled down”; and the young man in his thirties who had banked his sperm when first diagnosed with cancer and was hoping he’d live long enough to make a photo album for the child his wife would carry after he died. (I cried as I walked to my car when each of the too few sessions with him ended.)

These were different kinds of deadlines from the production and editing ones I had lived with and worked my life around at Firebrand. There was nothing I could do to slow down disease, to rework schedules to accommodate changed medical conditions. These were not situations where my skill and determination could alter what I had decided were the drop-dead dates that would allow scheduling to proceed apace. (While I had often used the “drop-dead date” phrase in a book production timeline, it catches me up short as I write this.)

People died. Sometimes that was extremely sad. Occasionally it was emotionally devastating, and I had to take a step back from the work for a while. But there was something about knowing from the beginning what the ending was going to be that made it a different kind of experience. I was traveling a path with the person, if only in a minor way, and in my being there I was part of both their life and their death. The stories I heard and the relationships that grew as I asked questions and recorded our exchanges while they were living their lives, while they were dying, made my life richer.

The things I experienced and learned were moving and difficult: How very few people were able to or interested in talking about their life. Maybe because being a Hospicare client meant that they knew their life was ending and it was more than they could handle. But often it seemed as if they couldn’t acknowledge that their life had really mattered. When I asked what the things were that they had done that were important to them, that they wanted their loved ones to remember about them, I was usually told: “I didn’t do anything special. I really don’t have anything particularly interesting to tell.”

How different from my authors who believed that their stories, their truths, needed to be told, who were fairly brimming over with the desire to be listened to, to be seen and heard.

Nancy K. Bereano, is the founding editor and publisher of Firebrand Books, the groundbreaking and award-winning lesbian and feminist press (1985-2000) with 105 titles on its list, including work by Dorothy Allison, Alison Bechdel, Leslie Feinberg, Jewelle Gomez, and Audre Lorde. With a long grassroots activist history, both within and outside the LGBTQ community, Nancy is NYC born and raised but has lived in Ithaca for the past 54 of her 80 years. Although she has mentored many writers as editor and publisher, Fanning the Flames: The Making of (a) Firebrand, a personal/political memoir, is her first book-length manuscript. The building on the Commons in which Firebrand’s office was located was recently granted historic preservation status.

Hospicare Turns 40!

2023 marks Hospicare’s 40th Anniversary! All year long we will be honoring 40 years of care while working to ensure the future.

We have an important announcement for our community!

40 years ago, a group of concerned citizens, seeing a need in our community, formed Hospicare as a 501(c)(3) nonprofit organization.

Ever since that day, our community has helped keep it going, making it possible for Hospicare to provide tender hospice nursing and counseling care, palliative support, and bereavement services to thousands of people in this region.

Today there are challenges–powerful system and economic forces–like exploding healthcare staffing costs, for-profit hospice providers that make huge profits by providing less care, inflation, and the pandemic’s disruption of the healthcare system.

Today there are also wonderful opportunities for friends and supporters of Hospicare to ensure a strong future of care for all who need it.

In this, our 40th year, we ask for your participation to help us tell our inspiring story and help us strengthen Hospicare:

  • Share your story – Are you a volunteer, grateful family member, or staff member with a story to tell? We would love to hear from you. Fill out this form or call Sara Worden at 607-272-0212.
  • Follow us on social media and like or share our posts!
  • Become a volunteer – Next training begins in February!
  • Donate – As the area’s only nonprofit hospice, we rely on the generosity of donors like you. Donate today or contact Emily Hopkins about including Hospicare in your Planned Giving.
  • Swim – 2023 marks Women Swimmin’ for Hospicare’s 20th swim!! 300+ amazing, brave, strong, resilient, badass women will swim across the lake to raise money for patient and family care. Will you be among them, or will you sponsor a swim?
  • Attend an event – Stay tuned for ways to honor this milestone!

Read about our history on our blog!

40 Years of Compassion at Hospicare

By Jane Baker Segelken, MA, MSW 

With the 40th anniversary of the founding of Hospicare coming up in 2023, I thought this might be the perfect time to offer a little history of the organization, with a focus on its residence. 

Recognizing an unmet need

In the early 1970s, soon after Elizabeth Kubler-Ross’ best-selling book On Death and Dying was published in 1969, there rose up a national conversation about the advantages of home care for the dying over treatment in institutional settings. In Tompkins County, the county’s Health Planning Committee convened a group of concerned citizens and others involved in the health care community to discuss local programs for the terminally ill. The group discovered there were no services in the area that focused on the issues of the dying. In response to that vacuum, Nina Miller and Anne Costello co-founded Hospicare in 1981 to meet the needs of terminally ill patients in their homes. Then, in June 1983, Hospicare was officially incorporated as a not-for-profit organization. 

Initially, the Hospicare’s board hired just one nurse to provide information and support services to terminally ill patients and their loved ones. As the program grew, more staff and services were added. In 2002 the agency changed its name to Hospicare and Palliative Care Services of Tompkins County, Inc. Today the organization’s 40 employees and nearly 100 volunteers serve patients and families in both Tompkins and Cortland Counties. 

A first in the state 

 In the early 1990s, the idea of a residence was born. The intent was to make available three new services: respite assistance for home caregivers who find the strain of caring for a dying person momentarily too great; transitional care for terminal patients who are being moved from hospital to home care; and a home for those who are dying but cannot be cared for in their own homes. 

There was a roadblock, however, to opening one:  New York State law, at the time, didn’t allow for residential hospice facilities. And so, Hospicare staff and volunteers lobbied Albany legislators to change the law. They succeeded in getting legislation passed that allowed “the provision of hospice care in a hospice residence … to provide hospice care to between three and eight patients at one time who otherwise do not have a suitable home or caregiver in order to receive hospice case in their own home.” 

Opened to patients in 1995, Hospicare’s Nina K. Miller Hospice Residence (named after the agency’s founder and first director) was the first certified freestanding residential facility in New York State. It sits on more than 11 acres on South Hill in Ithaca and offers six private rooms with views of the extensive gardens, pond, and countryside, meals, activities, and staff on site 24 hours a day.  

Services at the residential facility 

A recent snapshot of care in the facility: One patient, a mentally alert widower, enjoys taking slow walks in the residence with his walker and a volunteer at his side. He tells stories about his life—his struggles and his accomplishments. His grown children visit nearly every day to sit with him and talk for a bit. In quiet moments, he gazes out at the chipmunks and birds that populate his balcony. Another patient, with advanced dementia, was frightened at first when she was brought to live at the residence, but now she is often relaxed and cheerful, enjoying the warmth of the aides and nurses and volunteers, enjoying having lotion rubbed into her feet, enjoying the soup lunches and the comfortable bed. Another patient, who has a painful condition that seriously limits her mobility, is grateful for the constant care, the pain medication, and the careful attention that is paid to her various food allergies and aversions. Every patient is visited regularly by the spiritual care coordinator, Edie Reagan, and by Hospicare’s medical director, Dr. Lucia Jander, as well as by social workers. 

The hospice way of thinking is to provide pain management, symptom control, and emotional and spiritual counseling in a warm, supportive environment via a care team, both for patients living in the Hospicare residence and for patients living in nursing homes or their own homes. Care for patients’ families and other loved ones is also a big part of hospice. Advice, help with planning, medical education, and bereavement support are all mainstays of Hospicare’s work. 

Financial considerations 

The residential unit is a private-pay facility that is separate from any other institution in the region. While private insurance, managed care providers, Medicare, and Medicaid will pay for the medical services provided, residents pay for the room, board, and custodial care, which is currently set at $350 per day. But there is a generous sliding-scale, and Hospicare never turns away patients for inability to pay. In fact, Hospicare provides so much charitable care and fee reductions that it relies heavily on gifts from the community to make up the difference each year. It is generous donations from individuals and foundations that make it possible for Hospicare to offer bereavement services to the community and hospice care for all who need it, regardless of finances.  

Jane Baker Segelken, MA, MSW, is part of the Social Work team at Hospicare & Palliative Care Services. 607-272-0212; hospicare.org