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.”
The first time I visited Hospicare was during a clinical rotation during my last semester of nursing school. As soon as I walked into the Residence, I knew how special it was and that one day I would work there.Three long years later, after going home to help my parents,then working on the fourth floor at Cayuga Medical Center, I am now a nurse in the Hospicare Residence.
I feel proud to say I work at Hospicare. I haven’t tired of hearing how moved people are by what we do, by the kind of care we give. I believe we are doing profound work in our little six-bed Residence that is really a chapel in disguise.
One night I held a patient’s hand as he died because his wife and daughters were not there. The gratitude they felt that he did not die alone, that someone sat by his side as he left this world, made me weep. I was the one who got the gift. Sitting with him was a privilege.
Sometimes when I am tired or my back hurts, I forget the bigger picture of what we do within the Residence walls. I forget that we have created a place where people come to live as they walk toward the end of their lives. I forget, in those moments, that every day I come to work and tend to my patients is an honor that is almost indescribable to anyone who doesn’t work here.
How can I explain what it means to wash a patient who has died, how the tenderness of it can bring tears to my eyes? How can I describe how holy and sacred this work is? We are there to care for those who are loved and adored and can no longer be at home. They are placed in our hands with trust and the hope that we will do what we do day after day after day. At the end of my shift, I tiredly walk to my car knowing we have all worked hard to make our patients comfortable and to provide a place for them to gently lay their heads,and that we will do it all again tomorrow.
Lisa Schwartz, RN, was a nurse in the Hospicare Residence when she wrote this essay about the rewards of her work with patients and their families.
I started volunteering at the Nina K. Miller Hospicare Residence in April 2012.I have learned something special from each individual I have encountered.I have been moved by the look in patients’ eyes when I have held their hands and they are unable to speak. I have sat next to others who were unconscious, or who could no longer speak and were unable to open their eyes. I have put my hand on top of their hand and have felt their heartbeat slow down or their hand twitch slightly as they manage to just barely move a muscle. Just bringing a patient a meal or a beverage is rewarding because they smile or say thank you, and I know they feel loved.
The work I and other volunteers do helps the Hospicare staff as well. Volunteers help make staff members’ jobs easier so they can concentrate on the professional care they are qualified to give, while we can focus on the volunteer work we’re able to do.
Every minute I have volunteered with Hospicare I have learned more about myself and I’ve learned about the patients I have been with.Some patients have told me about their experiences living though World War II or Vietnam. Many have shared cherished memories of all kinds with me.
It is truly an honor to work with Hospicare and to be involved in a patient’s life during their last days.