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 

Dogs Bring Love and Comfort to Hospicare

By Emily Hopkins

Hospicare volunteers bring love and furry kisses to patients’ bedsides.  Left to right are: Eve and Finn, Avery, Janet with her dog Eve, and Ruby.

“Animals aren’t judgmental, they don’t care what you look like, what you sound like, who you are. They reduce anxiety and heart rate, and they ease depression,” explains Hospicare volunteer Janet Gray, who directs Cornell University Veterinary College’s Cornell Companion Program. The program, which marks its 25thyear in 2023, makes regular visits to 14 care facilities and group residences in the Ithaca area, including Hospicare. Janet visits Hospicare with her Golden Retriever Eve. 

“During the pandemic,” Janet says, “Hospicare was one of the only places besides Longview, to allow our visits. “The dogs even went on Zoom meetings with residents of Longview. 

Each of the 14 facilities regularly visited by Cornell Companion animals and handlers has a team lead. Hospicare’s team lead is Marg Pough, owner of four adorable Border Terriers whom she brings to Hospicare: DJ, Devlin, Pipit, and Avery. Janet marvels at how in tune with humans many companion animals can be. “Many of them seem to know which people want a snuggle, which just want a quick pat.” 

Anne Robbins, a retired school nurse and Montessori school administrator, regularly visits Hospicare with her mild-mannered Goldendoodle, Ruby. Hospicare can expect at least one visit a week from a companion animal and his or her human. 

Cornell Companion’s program currently boasts 40 volunteer humans and 40+companion animals, including an owl named Luna and a llama named Breakfast. Each animal must pass a rigorous test of their ability to stay calm, not react to canes and wheelchairs and walkers, and to let people—including children and the elderly—pet them awkwardly or heavily.  

Before she had Eve, Janet used to bring Ace, also a Golden Retriever (she’s owned Golden Retrievers for the past 40 years).  

“There was a wonderful lady who lit up every time Ace and I visited,” Janet remembers. 

“She had a box of dog treats on her nightstand. Ace would put his paws on her bed so she could pet him. She delighted in talking about her dogs from childhood and how she missed them while she stoked Ace’s head and ears. Ace closed his eyes while she talked and petted him. At the end of our visit, Ace gladly received a dog treat from her. We visited her for many months at Hospicare until one day when we arrived, we found her room empty. We later found out that she had improved and was moved to another facility.” 

“Cornell Companion dogs have been visiting our residence for many years now, where so many patients as well as staff have benefited from the comfort they bring ” says Wendy Yettru, Hospicare’s Manager of Volunteer Servies. “One of my favorite memories was of one our patients who was blind and bedbound and the dog that was visiting was placed in the bed gently next to him. This patient was non-verbal, but the smile that came across his face as he embraced the dog was incredible!” 

Why I Work in Hospice (Part 5) – Sarah Nickerson, Communications Coordinator

A Special Blog Series Written by Hospicare & Palliative Care Services Staff

This November, we started a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Because we had such a positive response to the series, we are continuing it past November and into 2022. Each post features a different member of our staff as they share why they love the work they do. In part five of this series, we feature Sarah Nickerson, Hospicare Communications Coordinator.

Sarah Nickerson, Hospicare Communications Coordinator

“Hi, my name is Sarah Nickerson, and I am Hospicare’s new communications coordinator. I spent the summer helping Hospicare’s development team with Women Swimmin’ as the seasonal events assistant, and was hired into my current role by Sara Worden, director of development and community relations, in November. I am so excited to take on this role and help share the amazing work our team does and stories of the people we serve!

My relationship with Hospicare began many years ago. In my early twenties, I accompanied my mother, who was a Hospicare volunteer, to a bereavement group for children held at the residence on Kind Road. A few years later, I proudly waited on shore while she swam across Cayuga Lake as a participant in Women Swimmin’ for Hospicare. In the summer of 2018, my mother was diagnosed with a terminal brain tumor and given less than a year to live. We were fortunate enough to be able to move her into Hospicare’s residence for the final months of her life. Having my mother in care at the residence allowed us to be with her as loved ones and not caretakers, which we were ill equipped to be. Hospicare became a home away from home in those last two months before my mother’s death: a safe space filled with love, where I could be nurtured by community.

The amazing care that was given to my mother and to our entire family by Hospicare’s staff stays with me and is why I am so honored to be part of this team today. I look forward to continuing to help Hospicare provide our community with compassionate end-of-life care and grief support.”

I took this photo of my father holding my mother’s hand while she was in care in the residence at King Road just a few weeks before her death on Valentine’s Day of 2019.

***If you have a hospice or Hospicare story you want to share, please email Sarah Nickerson at snickerson@hospicare.org for more information or send a letter to:

Hospicare & Palliative Care Services

Attn: Sarah Nickerson

172 East King Rd

Ithaca, NY 14850

Swimmin’ for My Mom

By Casey Carr

We brought my 95-year-old mother home to live with us at the start of the COVID-19 pandemic so we could safely give her the loving care that she deserved. Although the first nine months were filled with lovely meals together, fun family card games, holiday celebrations and bonding time with my two sons; my mother’s health began to rapidly decline after she suffered a fall. This decline necessitated a hospital bed, Hoyer lift, and an enormous amount of emotional, medical, and physical caregiving. Due to COVID-19, placing my mother in a nursing home was out of the question. 

Casey Carr (left); Casey’s mom – Helene Carr (middle); Casey’s sister – Jayne Weeks (right) 

Hospicare to the rescue! I cannot begin to tell you how Hospicare made it possible for me to care for my mom at home and stay in balance at the same time. The emotional and informational support from the Hospicare social worker was phenomenal. She really cared about me, my mom and my family and made this difficult transition do-able. She helped me find and use every resource Tompkins County has to offer. 

Weekly visits from Hospicare’s nursing staff taught us how to care for and love someone while they are leaving us. They helped with everything from stress management techniques and medical intervention to changes in nourishment, toileting and mobility. They answered every concern and question no matter how odd or uncomfortable. Most of all, the nurse who visited weekly and more during the last few weeks of my mother’s life helped us understand what we could expect and how to respond in a medically knowledgeable and loving way. Please support Hospicare so they can provide this immeasurable resource to others.  

The home health aide that Hospicare provided gave me much needed respite to take care of other things in my own life that kept calling to me. The spiritual advisor checked in every week to ensure my mom and I had someone to process the changes happening during this challenging time.  

And they did all of this for no charge to us at all! And so, I swim for Hospicare to give back so Hospicare might be able to help others enjoy and care for their loved ones at home during the last weeks or months they are with us. Please help me by donating what you can to Hospicare and Palliative Care Services. 

Alzheimer’s Doesn’t Mean that a Good Life is Over…a Letter from a Son to his Mother

Sometimes, we might not have the words right in the moment, but through contemplation and the creative practice of writing, the depth of understanding comes. Here a son reflects on the gifts his mother gave him in a letter he wrote to her after her death. Writing a letter to a loved one (even if you never send it) can be a healing act.

Thank you Steve Demakos for sharing your reflections on being a caregiver for your mother. It is an inspiration to us all to cherish the times we have with loved ones.

Dear Mom,

Thank you from the bottom of my heart for the gift you have given to me for the last five years- making my home your home with warmth, laughter, smiles, and lots of hugs.  You may not know this, but in this time you taught me the truest meaning of love.  It’s as if you have given me two lives.  The first, of course, many years ago in a New York City hospital.  The second life beginning the day I started helping you with your Alzheimer’s and continuing for the five years you lived with me at Valley View Road here in Ithaca. This is where you showed me that giving is more powerful than taking and can actually heal a fractured relationship. You and I became best friends and in our five years together you offered to me the fierce love of a mother and the genuine loyalty of a best friend. You and I together- remember I would always tell you we were a team- showed the world that having Alzheimer’s doesn’t mean that a good life is over. Together you and I started new family traditions. Your favorite: every Sunday morning a homemade cinnamon bun with your coffee. My favorite: the deal that we made that whenever you would give me a smile, I would give you a hug, which turned into countless hugs.  

On Thanksgiving morning, when you decided it was time for you to move on, I was overcome with a sense of loss that no words could ever describe. I have come to realize that that may have been your greatest gift to me.  As time goes on, I realize that you and your love haven’t gone anywhere.  You and your love reside deep inside me, exactly where they were that day in the New York City hospital when you helped me come into the world.    

Mom, I will close for now with one more of our traditions:  as I would say to you every night before you would fall asleep, “thank you for being my mom”.  And you would say to me, “it’s my pleasure”.  

Love,

Your son

Faces of Cortland

By Barry Miller

Team Member Profile: John Hughes, RN

Job Title: Primary RN/Case Manager

Residence: Cortland

Family: Wife Liz, two children (a son who lives locally and a daughter in Norway) and three grandchildren, with one on the way.

New Beginnings on the Horizon: “A current goal is to find a place with more land and barns and get back to having horses again.”

John Hughes knows a thing or two about new beginnings. “I’m kind of all about that,” says John. “I have always thought of life as an adventure and that the only limit is our own courage and imagination.”

Take, for instance, John’s 40-plus years of professional work, in which he has been a commercial truck driver, a blacksmith, an opera singer (“Please don’t ever ask me to sing—it’s long gone!” says John), a marketing/development manager for large hospital systems, a nursing home administrator, a manager for 55 skilled-nursing and assisted-living facilities, an owner/operator of a national firm providing clinical and operational consulting services to over 300 health care organizations in 30 states, and an owner/operator of a senior services campus—among other pursuits. “It sounds like I had a lot of trouble keeping a job, doesn’t it?” he jokes.

Speaking of new beginnings, what advice might John give a prospective Hospicare healthcare worker?

“It depends on what kind of work environment they may be looking for,” John says. “For someone who values autonomy and who is fulfilled by building a true relationship with patients and families over a long term, hospice is great. The reward is helping patients and their families through the final journey. Of course, we have accountability, but each day we are pretty much able to design our day, meaning where we go, who we see, and so forth.”

Regarding the unique aspects of hospice patient care, John reflects, “Our patients are as ‘real’ as they come. I have had more real heart-to-heart conversations with patients in the hospice setting than anywhere else. So, if a nurse is looking for this type of setting, Hospicare is a great opportunity.”

Outside of work, John is a board member of Cortland’s Family Health Network, a group of five federally qualified health centers in Cortland and Cayuga counties. John also enjoys gardening and farming their half-acre plot with his wife, Liz, a Cortland native. But perhaps his biggest passion is raising and farming with Belgian draft horses, which he did while living in Ohio. “Let’s call that a retirement goal,” says John.

In Gratitude…

This time of year we traditionally gather with friends and family. That may look a little different this year, but we can still cultivate gratitude in our hearts. 

November is also National Hospice and Palliative Care Month, a time to pay special recognition to the work done every day by these skilled individuals, whose dedication to Hospicare’s mission has withstood even a global pandemic.

The story of Norma Helsper (as told in the video below) highlights the continuous service our interdisciplinary team has provided to all those that need our care in our community. 

We also wish to honor those advocates, volunteers, referral partners, and donors whose support sustains the good work of Hospicare. We thank YOU for all the many ways you support Hospicare!

End-of-Life During a Pandemic; Norma Helsper Made the Best of it.

By Jennifer Gabriel

From the moment Norma Helsper moved into the Hospicare residence, staff knew they were greeting someone special. Phones rang off the hook with dozens of friends asking about visitor restrictions, and whether it would be okay to drop off flowers or her favorite custard. “Norma’s got spunk and you’re going to love having her there,” one caller told me. 

So maybe I shouldn’t have been surprised when I walked into her room for the first time.

Norma is perched in her recliner, carefully studying her absentee ballot for the New York primary election.  

“You’re voting!” I say. 

“Of course I’m voting!” she exclaims. “Of COURSE! This is an important year. Too important to miss.” 

Norma folds her ballot and places it on her table, as I settle onto the edge of her bed. Norma’s mom is sitting across from us, answering a cell phone that never stops ringing.  Because of Hospicare’s COVID-19 restrictions allowing only one visitor in the room at a time, Norma’s sister sits outside, waiting for her turn. 

“It’s awful,” Norma says when I asked about her experience in facing end-of-life in a pandemic. “This makes it so hard for me to see my friends, though I’m grateful that one can be here at a time. I know that’s not true in so many other places.” 

Thirty-three years ago, Norma moved from her childhood hometown outside Chicago to the Finger Lakes. She had accepted her dream job in the Spanish department at SUNY-Cortland, where she quickly became close with her colleagues. The tight-knit group of friends are many of Norma’s callers and visitors these days, and they show up in ways both big and small.  Luscious bouquets of flowers fill every surface in Norma’s room, and greeting cards cover her bulletin board. 

As we chat, Norma points to a wilted flower arrangement on a table behind me, and kindly asks if I can remove it.  No sooner is it gone and she is back on the phone. “Good news!” she tells a friend. “There’s room for more flowers! Bring some anytime!” 

Norma and her husband first settled in Cortland, and eventually moved to Ithaca, where they bought a home in Fall Creek. “Oh wow — the Halloweens in Fall Creek!” she chuckles, referring to the hundreds and hundreds of families that flock to the neighborhood every year for candy and community. “That night is something, isn’t it?” 

Norma is easy to talk to and quick to crack a smile, so I understand why people gravitate towards her.  One of those people – a friend named Mary — is the reason Norma came to know about Hospicare. 

“Mary was a wonderful, wonderful friend,” Norma explains. “One day, she called me up and said, ‘Norma, there’s no easy way to say this: I have lung cancer’.” 

Eventually, Mary moved into the Hospicare residence. 

“I remember it was room 3 because that one has the larger deck,” Norma recalls. “And one day we had a little soiree there with a whole bunch of friends. We really had the nicest afternoon. It was such a nice moment, and a truly great memory of Hospicare.” 

In the years that followed, Norma continued to support Hospicare, raising money for the agency as a swimmer for Women Swimmin’ for Hospicare.  

Surgery and treatments kept Norma’s ovarian cancer at bay for several years, but this spring, it became obvious that Hospicare is where she needs to be.  “The people that take care of us are amazing,” she says. “The rooms are comfy. The birds are beautiful. The grounds are beautiful.” 

Norma’s days are filled with friends calling her phone, trips through the Hospicare’s gardens, and visits with her good friends from SUNY-Cortland and her church, the First Unitarian Society of Ithaca.

Twice now, three of her talented friends have come by to play music for Norma to enjoy – since they aren’t able to be in the residence together, they pull up a picnic table and sing to her from below her porch window. 

That’s also where the minister from the Unitarian Church planted 16 colorful flamingos in the grass, to give Norma a laugh. 

Norma remains upbeat, but this hasn’t been an easy road.  Norma’s husband needs round-the-clock care and lives in a nursing home. The couple has not been able to get together, not even virtually, since he doesn’t know how to work the technology. “It’s very hard,” Norma tells me. “It’s what we both had to do and it was the right decision. I know that. But it’s still hard.” 

Norma’s only daughter lives in a group home some 45 miles away. Restrictions there mean no residents are allowed to leave – the staff made a special exception for Norma, so she was able to see her once so far. But of course, that’s not enough. 

And then there’s her 92-year old mother, Betty, who traveled from the Chicago area to be with her daughter for a week. She hopes to return soon, but traveling is difficult at her age, and she isn’t sure when she’ll be able to make the trip. 

I ask if I can take a photo of them together. “Of course,” Norma says with a smile. Betty is a little more reluctant, quietly admitting that she hadn’t taken a single photo of Norma since she moved to Hospicare.  

Betty pulls out her phone and swipes to find a picture from last fall, when Norma’s cheeks were full and her body stronger.  “Isn’t she beautiful?  Just so beautiful.” 

Norma encourages her mom to take the photo with her, and Betty moves carefully to Norma’s side.   

“This isn’t what is supposed to happen,” Betty says to Norma, once the photo has been taken and she’s settling back into her chair. “I’m supposed to go before you.”  

Her voice quivers. “This really isn’t what is supposed to happen. It’s just not.”  

“I know, sweetheart,” Norma replies softly.  

They lock eyes. 

 “I know.” 

Putting memories into words … a life of poetry

There are many stereotypes about Hospice that we see dispelled every day by patients in our service. Sometimes the sound of laughter and song float through our residence as patients connect with family, staff, and volunteers. And there are often signs of creativity, such as the handmade paper flowers Martha decorated the hallway of the residence with. Russell Bourne, or Rusty as he is known, is one of those patients on our services who seems to defy our expectations of what final stage of life looks like. While on Hospice, Rusty published a book of his poems.

Earlier this Spring, Rusty shared poems at Lifelong from his recently published book Between Sky and Water; Poems of Maine, the Finger Lakes, and Changing Weather. His poems elicit a rich felt experience of our relationships with the ever-changing landscape and how it can touch our hearts.

Rusty signs our copy of his book – “For my friends at Hospicare.”

The event beautifully illustrated the community collaboration between Kendal, Lifelong, and Hospicare, and drew a lively audience as Rusty said “cried when they were supposed to cry and laughed when they were supposed to laugh”.  Rusty’s poems were well received and he elicited many chuckles from the audience when he opened his Q&A by asking “Are there any other questions? Like where is Maine?”.

Russell Bourne began his career as a writer on LIFE Magazine in 1950. Career interrupted by the Korean War, he operated as a Special Agent in the US Army’s Counter Intelligence Corps in Berlin until 1953. He then returned to Time, Inc, and served as Henry Luce’s assistant. Thereafter, he ran several book publishing departments, from Time-Life Books and American Heritage to the National Geographic and the Smithsonian. In the 1980s, he began creating books on his own and published about a dozen works, mostly on American History and Transportation, while also writing poetry. His poems have been published in reviews and journals across the country. He is a Fellow of the Massachusetts Historical Society. For many years his habit has been to spend summers in Maine and winters in the Finger Lakes.

Many of Rusty’s poems document “the excitement that I find in nature”. This connection to changing weather and the patterns of life and death in nature, prepare the reader for taking on more challenging topics of the heart like love and loss. In addition to facing his own mortality, he has also had two wives that received hospice. These many touches with death, and navigating his own grief are themes throughout the book.

From his poem, At Finger Tips…

Stretch out to seek her soft hand across midnight bed’s

cotton sheets

(though she is no longer there) and find answering fingers

cool and squeezing back on yours and know

love may come at black

night again.


Rusty surround by some of his favorite artwork at his residence at Kendal.

At the end of the discussion Rusty advocates for everyone writing their personal memory “For our lived experiences are what make us, and no one will write them down if you don’t”. Russell’s book was published by Cayuga Lake Books and is available locally at Buffalo Street books or online.

Thank you to Rusty and his family for their support in writing this article.