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.
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!
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.”
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.
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
(though she is no longer there) and find answering fingers
cool and squeezing back on yours and know
love may come at black
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.
When I was at Boston Conservatory of Music majoring in dance, a group of us visited a hospice and performed for the people living there. More than three decades of performing later and it is still one of my most memorable experiences.
The performance – a Christmas show – started. Lacking a proper stage we danced in a big room with our audience in wheel chairs surrounding us. Every way I turned there was a new face watching me. Knowing that our audience was terminally ill made me cautious about how to approach them. They looked so delicate, propped up in their wheelchairs, with their heads covered in scarves to keep the cold from their heads. I wondered if I needed to alter my presentation in some way to make them more comfortable. I was terrified, but I kept dancing and smiling and pretending that my audience was perfectly healthy. As my nerves calmed down I began to see the looks of sheer joy on their faces. I don’t know how to describe it without sounding trite. Maybe it’s just one of those things that you have to experience to understand. I was only 20 years old and I couldn’t imagine what it might be like to be dying. I definitely didn’t think it included smiling or expressions of joy. It was my first experience of understanding of the power of dance to communicate. I had spent an awful lot of time working at becoming a dancer and a lot of that time is solitary. It’s self-driven because let’s face it – no one else cares if you can point your feet or jump high or how many pirouettes you can do except you! And all that work was now giving something to someone else. And much to my surprise, it was giving something to me, too! I took a giant step forward feeling the responsibility and power flowing through me. It was different from my parents or my teachers applauding me. I now had power to make contact and to bring joy.
Years later when I wasn’t getting much work because of hitting middle age – and that is bad news for a dancer (especially a female dancer) – I decided to seek out that experience again. I took a job as an artist in residence at Calvary Hospice in New York City. I went there wanting to relive that strong connection to an audience that gave me so much power. I honestly didn’t take the job for altruistic reasons, as much as I would like to pretend I did. I was looking for something. I knew that I was needed there. It was that simple.
Dancing is not at the top of the activities list in a hospice, but I discovered that every single person I came into contact with had a relationship to dancing. I led a large group in dancing, I danced with patients in their rooms, I talked about dance with a dying dancer, I talked to a man who met his wife dancing to Artie Shaw before Artie Shaw became famous! I remember one patient especially— Mr. Lettman. He wasn’t actually ready to be in the hospice yet but he had no where else to go and he was seriously ill with prostate cancer. He had been a New York cab driver since immigrating there from the Bahamas. Knowing he could no longer walk, I began our time together by suggesting that he could move as much as he wanted to right there in his bed. It made sense to him and he really missed moving. I put on a CD of the song “Wade in the Water” and prepared to lead him in some movement. Well….Mr. Lettman showed me! He closed his eyes and he started by putting his palms together in a prayer. As he expanded his movements I realized I was witnessing a movement prayer. One of the nurses entered during his dance and she stopped and watched with me. She looked surprised but the joy in his body was contagious and she began to smile and nod to me. We both knew it was a very precious and special moment to behold. The music ended and Mr. Lettman opened his eyes and smiled at me and said, “Thank you.” I thanked him back. I believe that was some of the most authentic dance I have ever had the privilege to see. I was included in his prayer.
My play, Dégagé (disengage), was born of my journal record of experiences like the one I had with Mr. Lettman. I grew to care very deeply about many of the people at Calvary. And I learned to care the moment I met them because very often they were not there when I returned. They were on a bridge and had already started their journey.
The residents of Calvary allowed me in to the most private of moments in life – their death. And when I sat with them or moved with them people often told me all about themselves. I suspect if we had met under other circumstances that they might not have been so open, but when it’s your time, you want to be remembered.
It was an honor to be here with them. Dégagé (disengage) seeks to honor every single one of them.
I worked with a patient who was in his late 30’s and had been diagnosed with an aggressive form of colon cancer. At the time of his referral to hospice, we had been told that his pain was not well-controlled. On my arrival at his home, the patient was lying on the sofa. I explained the 0-10 scale for rating pain and asked him to give me a number; through gritted teeth, he said, “Nine.” And it was clear what our first priority had to be…
We quickly got his pain down to “6,” at which point he was able to engage in conversation and looked much more relaxed. Over the next several days we visited him twice a day and worked with his MD to adjust the doses of four different drugs, as he actually had multiple kinds of pain – a narcotic, a neuropathic med (for nerve pain), a steroid, and an NSAID (e.g. ibuprofen) for bone pain.
One day I walked in and, as usual, found him lying on the sofa. I said, “OK, you know the drill – what’s the number today?” He gave me a big smile and, making a circle with his thumb and index finger, said “Zero.”
Yes, that patient died, and that was sad. But before he died he got up from that sofa and took his children to visit Marineland and took them fishing and went to visit his parents once more. He really lived until he died. Excellent pain management gave him back what was left of his life.
Pauline Cameron, RN, CHPN was a Hospicare staff member for many years until her retirement in 2014.
As Medical Director of Hospicare & Palliative Care Services, I spent a considerable amount of time addressing issues related to pain and its treatment. Some people have deeply-held beliefs about pain medication which have little or no basis in reality, but which interfere with their willingness to take the drugs that will provide needed relief.
Myth: One person can judge another person’s pain by observation.
Truth: What people say about their pain is the best way to know how much and what kind of pain they have. Some people with severe acute pain and many people with chronic (constant) pain may not show any signs of pain.
Myth: The use of strong medications for pain can lead to addiction.
Truth: Addiction begins as a psychological phenomenon. It is extremely rare for a person to become addicted to narcotics if the medication is being used to treat pain, and the person was not addicted before.
Myth: People taking narcotic medications can’t function well.
Truth: Moderate to severe pain itself often interferes with psychological and physical function. People getting adequate relief of pain through use of narcotic medication commonly think more clearly and function better physically than they did before taking the medication. Side effects of narcotics commonly do include sedation, nausea, and constipation. However, with chronic use, sedation and nausea almost always resolve, leaving only constipation as a side effect which does require ongoing treatment.
Myth: People taking narcotics become dependent and can never stop.
Truth: If the source of the pain is eliminated, a person can safely taper off. On the other hand, with chronic use, it is true that a person’s physical system can become dependent upon narcotics, meaning that abrupt withdrawal of medication can lead to an uncomfortable withdrawal syndrome. This is very different from psychological addiction, and withdrawal syndrome can easily be avoided by tapering off the medication instead of stopping it abruptly.
Myth: Morphine and other narcotics are useful only for treating pain.
Truth: Narcotics are quite effective in treating shortness of breath. As more and more people with chronic lung disease and chronic congestive heart failure reach a terminal phase of their illness, morphine and other narcotics provide welcome relief from episodic shortness of breath, without worsening the underlying condition.
Myth: Morphine is only used when you are dying, and brings death sooner.
Truth: Morphine (and other narcotic or opioid pain relievers, including codeine, oxycodone, hydrocodone, hydromorphone, fentanyl, and methadone) can be used to treat moderate to severe pain from any cause, when less potent pain relievers such as aspirin, ibuprofen, naproxen, and acetaminophen are not adequate. Morphine is often given to relieve pain in patients who are near death, and in such cases it is just as likely to lengthen life (by allowing the patient to relax and live comfortably) as it is to shorten life (by decreasing alertness and thus decreasing intake of fluids). Generally at that very last stage of life, getting comfortable and staying comfortable to the end become the main goals of the patient, and narcotic medications are very useful in helping the patient meet those goals.
If you have questions about pain and symptom management, talk to your physician or call Hospicare & Palliative Services at 607-272-0212.
Dr. Eric Lessinger was the medical director at Hospicare for 12 years until his retirement in 2014.