Our Bereavement Library provides an assortment of information and is available to those interested in learning more about grief and loss. There are lending libraries in the Ithaca office (located in the lower level in the bereavement area) and the Cortland office (located in the large conference room) where books are available for self-checkout. Each location has a wide variety of articles about grief that you may take home. Some of the subjects covered include information on specific loss issues such as men and grief, how to support grieving children and teens, and dealing with the loss of a sibling. Lists of suggested readings and internet resources are also available.
Our large bookshelf at the Ithaca office is filled with picture books for children to help explain death, dying and grief in meaningful and age-appropriate ways.
Meet, Xihang Wang, one of our amazing patient care volunteers. He has volunteered in the Residence since fall 2020. He has been a regular at the dinner shift for most of the time and this semester, is doing a lunch shift. Xihang shares this about his volunteering experience:
I wanted to sincerely thank you for all your help starting way back in fall of 2020. You taught me an incredible amount when I first trained to become a volunteer, and I significantly appreciate all the support you have provided me in the years ever since. Volunteering at Hospicare has changed my perspective on the purpose of medicine – I originally believed that medicine was solely about treating disease. Now, I understand that medicine is instead most fundamentally defined by the sense of kindness and compassion directed towards patients.
It was a humbling experience to see all the dedication displayed by the Hospicare staff and fellow volunteers as they cared for patients in the residence, and I hope to emphasize this sense of humanity in all that I do in the future. Looking back, I am extremely grateful to have had the privilege of volunteering at Hospicare. Thank you again for all that you, and Hospicare, do.
This year marks our 40th Anniversary, and we continue to honor the past and work together for a sustainable future. Thank you to all those who attended the 40th Anniversary Donor Luncheon at Hotel Ithaca. It was truly a wonderful celebration. Please enjoy a few photos, by Casey Martin, from the event.
At the luncheon, Nina Miller, former Executive Director of Hospicare said “So here we are, 40 years later, honoring all that has brought us to this point. I am profoundly grateful for all that this organization has meant in my life, providing me with the most wonderful professional experience I could have dreamed of, with friendships that have lasted for almost half my lifetime, with the knowledge that our work was important and humane and compassionate, and of course for the personal experience my family had at the most difficult moment in our lives”.
There will be more occasions to get together and celebrate coming up, with the 20th Women Swimmin’ in August and a community-wide celebration of Hospicare’s 40th in the fall. Thanks again to the entire Hospicare community for your continued enthusiasm and support, which continues to be critical to our ability to offer high-quality services to all who need them!
As Nina says “Look how far we’ve come. No one has to face the end of life alone.”
Our 20th Annual Women Swimmin’ is on Saturday, August 12, 2023!
Wow, the 20th Women Swimmin’ for Hospicare swim!
Once again, we have lots of different ways to participate. Swim the lake, be a safety or escort paddler, volunteer, donate, or Go the Distance! YOU choose which is the best fit for you!
Lake Swimmer – The amazing 300+ women who swim from Bolton Point on the east shore of Cayuga Lake 1.2 miles to the Ithaca Yacht Club on the west shore, on Saturday, August 12th!
Go the Distance – Set an activity or service goal in support of Hospicare. Between May 9 and August 12, anyone can participate by doing any activity in support of Hospicare. Whether you are walkin’, swimmin’ laps, knittin’, bikin’, pickin’ up trash for your fundraising activity, we are grateful for your support!
Support Paddler – Experienced paddlers in canoes, kayaks, and stand-up paddleboards (SUPs) assist our swimmers by guiding, escorting, and cheering them on as they swim across the lake!
Volunteer – Help out our participants and attendees before, during, or after the event.
Our Mission Statement
Go the Distance and Women Swimmin’ for Hospicare is a fundraising event that supports the expert, compassionate care which Hospicare & Palliative Care Services brings to patients and their loved ones at any stage of a life-limiting illness and/or following a death. This event raises funds and provides information and education about the agency and its mission in a manner that is inclusive, fun, and consistent with Hospicare’s ideal of respect for all people.
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.
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.
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.
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.
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.
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.
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.
My wife, Mary Ellen Carollo, was a resident in Hospicare from September 2014 until her death in May 2015. Our family is convinced that the wonderful care she received there is what kept her alive for those nine months.
Mary Ellen was diagnosed with an inoperable, terminal brain tumor in Fall 2013 when she was only 58 years old. While she was being treated that first year, she was able to live at home. But by the following year she was starting to decline and needed more round-the-clock care than our family could provide.
We called Hospicare and were able to place her in one of the residential facility rooms for what everyone thought would be her final few days – but, thanks to the 24-hour attention the staff was able to provide for her, she rallied.
Then, around the 2014 holidays, she started fading again… yet once more improved in the short term. By Spring 2015 she began what turned out to be a final decline from which she could not recover, and one night she died peacefully in her sleep with one of her sisters, one of her brothers, our son and me by her side.
During all that time in Hospicare, it became a second home for our entire family – her mother, her eight siblings and their spouses and children, my two siblings, and our son – along with numerous friends from throughout her life, co-workers from her long and illustrious career with IBM, colleagues from her various volunteer activities, and anyone who knew and, of course, loved her.
We got to know and become friends with Hospicare’s medical and care-giving staff and the administrative team, as well as with Mary Ellen’s “neighbors” in the residence and their families, too. We relaxed in the lounge, had drinks and snacks in the kitchen, played games in the living room, soothed our spirits with music (our son played piano, one of her brothers played banjo), held Mary Ellen’s retirement party from IBM, and celebrated Thanksgiving and Christmas of 2014. Some of us even had “sleep overs” in her room a number of times.
I lived in Ithaca at the time and went to see her at Hospicare almost every day. With Mary Ellen in Hospicare, I was able to go home for a break every night, and go to work most days, confident that she was getting excellent medical care and personal attention from the staff, as well as social interaction with that day’s visitors. That respite was critical for me, and as certain as I am that being in Hospicare kept her alive, I’m equally sure that it kept me from cracking up myself.
Naturally, we all became heartfelt and, if I may say so myself, generous supporters of Hospicare. Our family contributed in a number of ways, such as helping the staff out in the kitchen or with wheelchairs for Mary Ellen and her fellow residents, donating for one of the paving stones in the walkway around the grounds, and even making a substantial financial gift for the renovation of the kitchen – now known as “Mary Ellen’s Corner” in her memory.
One of her brothers and his wife, who live in Ithaca, are regular participants in Hospicare’s annual “Women Swimmin’ ” fundraising initiative, and that brother still helps out from time to time with landscaping work on Hospicare’s grounds.
After Mary Ellen died, we held a memorial service for her on the property, on what would have been her 60th birthday in August 2015. Hospicare was very generous in letting us use the facilities free of charge, and the staff helped us a great deal in making arrangements and setting things up. It was a wonderful and touching farewell in a setting that had come to mean so much for all of us.
That summer and fall, I attended Hospicare’s grief counseling program for bereaved spouses. Even though I had known I was not alone in losing the love of my life, commiserating with other survivors, under the guidance of Hospicare’s sympathetic and understanding grief counselor, was invaluable in helping me and the others cope with what for all of us was the biggest tragedy in our lives.
But that was not the end of our connection. We still show our continued support through annual donations, and I have included Hospicare in my own estate planning.
Having Mary Ellen at Hospicare helped make it bearable – or, to put it better, as bearable as possible – for us to confront the unbearable thought of her inevitable passing. For her and for us, facing death before her time was utterly heartbreaking. But doing it with the support of the caring people and the compassionate atmosphere we found at Hospicare helped make it an experience that, in spite of its sadness, we all treasure.
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!
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!
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.
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
Want to Make a Difference? Become a Hospice Volunteer!
Volunteers are an essential part of the hospice team; both in assisting our patients and families and in assisting our staff. Hospicare & Palliative Care Services is looking for:
• Volunteers to help assist our staff in the Ithaca office answering phones and greeting visitors • Volunteers to assist patients with advanced illness and supporting their families, especially in Cortland County • Volunteers to assist our patients in our Residence on King Road in Ithaca
The next volunteer training will be a hybrid of self-paced on-line training modules as well as meeting on Zoom with other attendees to discuss and learn more about hospice. The Zoom meetings are scheduled for 4 evenings; which trainees need to plan on attending all sessions. The dates are: 2/21/23, 2/28/23, 3/7/23, 3/14/23.
Each session is from 5:00pm – 8:00pm.Volunteers are thoroughly trained in the goals and philosophy of hospice and the compassionate care we offer our patients. Volunteers help provide our patients and families with respite, companionship, light housekeeping, assistance with errands and reading aloud, as well as provide support in our 6-bed Residence on King Road in Ithaca. We provide services in both Tompkins and Cortland Counties.
Once your application is received the Manager of Volunteer Services, Wendy Yettru, will contact you to set up an interview. If you have any further questions, please contact Wendy Yettru at 607-272-0212.