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.”
Looking towards the next decade at Hospicare & Palliative Care Services.
New Year’s is a time to reflect on the year that’s passed as well as set intentions for the one that lies ahead. This year seems particularly meaningful to me as we embark on a new strategic plan that will guide Hospicare into this next decade and beyond. Hospicare is honored to serve our neighbors throughout Cortland and Tompkins counties by providing palliative care, hospice and grief support to all who need us. While I am grateful to lead this incredible organization as Executive Director, Hospicare belongs to every one of us – our patients, families, volunteers, donors, supporters, and of course, our phenomenal staff.
Together, we are Hospicare. And together, we are going to make sure that every single person who can benefit from our care knows where to turn.
In 2020, we will embark on major initiatives to grow our palliative care program, which improves quality-of-life on a physical, emotional and spiritual level and is available to anyone facing serious illness. A major part of this initiative will be helping our community better comprehend palliative care, a term that still confuses many people. We’re hiring a nurse practitioner to lead our clinical efforts alongside the nurses, social workers, and other staff who are at the core of our care team. Simultaneously, a major gift from a grateful patient (read about the Tapan Mitra story) will allow us to jumpstart a multi-faceted educational campaign, spanning online, print, radio and in-person initiatives. As a valued part of the Hospicare family, you also are an important advocate! We want to ensure that you know and can describe palliative care to your friends and family, so we’ll be working on communication tools to help with that as well.
Another key priority for 2020 is to build awareness of hospice and how it can support families for months – not just weeks or days — before a death. Our hearts break every time we hear someone say, “I wish we had contacted Hospicare sooner.” Our goal is to help patients feel empowered to talk to their doctors about hospice, and to reach out directly to us at any time with questions. These are just two of Hospicare’s initiatives, and I’m looking forward to working with you to make them reality.
This community is a special place to call home, and it’s the people who make it so. Thank you for all the ways in which you support Hospicare’s work, and my best wishes to you and yours for a bright start to 2020! Kim De Rosa
Our lives are largely guided by our values, and as an organization, Hospicare is no exception. One of our core values is excellence, which we define, in part, as a commitment to continuous improvement in everything we do. We expect and remain open to change, recognizing that it is inevitable and necessary for all growth. It’s this value that encourages us to take time to assess and reflect on how we’re doing, and it drives us to improve access to and the quality of our services over time.
Whenever we have the chance, we dive deep into data, which can help provide valuable insights, especially when we can compare other similar organizations to our own.
Recently, metrics were shared with us that showed we are growing in a very important area. A newly released Hospice Analytics report of 2016 Medicare data showed that community members who need our hospice services are more successful in finding and accessing them. The measure, which is referred to as “hospice utilization,” is measured by the percentage of Medicare deaths in each county that occurred on hospice services.
The data told an interesting story, and one that we are proud to share with you. Across our service area, in both Tompkins and Cortland counties, hospice utilization increased between 2015 and 2016. Tompkins county hospice utilization increased by 3.7% and Cortland county experienced a growth of 3.6%.
While we’re proud of these statistics, and the community relations and outreach work that no doubt contributed to it, we’re more happy that this growth means that more patients and loved ones gained access to our services.
Bottom line: we’re reaching more families in both of the counties we serve.
At the same time, we will not rest on our laurels. Excelling in the context of hospice utilization in New York State is a great start, but we can always improve. We wouldn’t be embodying our value of excellence without looking to identify where we still have work to do.
One way we could be doing better is by getting involved with patients earlier, which would help introduce families to our services sooner and would increase the quality of life of patients in their final months. Like most New York hospices, our average length of stay is low compared to the national average. And this is where we need your help!
Help us get the word out so our services to reach the people who need them most. Talk to your friends and family about hospice services and the options they have when facing a life-limiting illness. Read more about why it helps to understand palliative care options before you’re sick. Connect with a staff person at Hospicare directly to discuss a patient – family members, friends, neighbors, and even casual acquaintances can make a referral. Additionally, we welcome the opportunity to speak to your group, large or small, about hospice or palliative care services in Tompkins and Cortland county. Email our outreach and communications manager at communcations@hospicare.org or give us a call at 607-272-0212.
When we heard the news of Bill’s condition it felt like my world was coming to a complete end…Life had no meaning…I kept asking, “Why?” We had so many plans for the future and now to be told this.
Hospice was brought up and explained to me how Bill could be at home with his family and not be in a hospital. We were also told that there would be someone to help us, just a phone call away whenever we needed it, even if our family needed it. Our Hospice nurse came often to check on Bill’s condition and would show us what had to be done and how to make him comfortable. She explained how to handle certain situations that might arise as it became closer to the end.
Hospice encouraged me to talk to him about what he wanted me to do with our farm and the people I should contact. This was something I needed to know.
Our nurse came at a moments notice if I needed her. She would arrive when tears were streaming down our faces and would have us smiling and talking about the good times all of us shared and memories we would never forget. She was our “Special Angel” and someone I trusted and who would listen when we really needed to talk.
Even when Bill was in a coma she told us to talk to him and tell stories that were important to us. Our nurse said he could hear us and I truly believe he did.
I never thought twice about calling in the middle of the night if there was a turn for the worse and if I was scared that I might do something wrong.
One of the hardest things I ever did in my life, that our Hospice nurse was very emphatic about telling me, was to let him know that I was going to be okay. Only hours after I did that, Bill died that night.
At that point I called Hospice and they came and took care of everything.
I wish everyone in our community would think about having Hospice if they have a love one in the final stages of life. The nurses and volunteers are there for you. To be at home with your family and things around you that you love is so important.
Shortly after the funeral Hospice contacted me to see how I was doing and suggested a volunteer would be in touch me that I could talk to. I did go out to dinner with her and after that she kept in touch with me.
I am so thankful for the doctor that put me in touch with Hospice at the time when our family needed it the most. As a board member of the Hospice Foundation of Cortland County, and as a family member of someone on service, I realize how important Hospice is and what wonderful things are being done.
Gail VanPatten served on the Board of the Hopsice Foundation of Cortland County. She wants everyone to know about the help and comfort that is available to them through Hospicare. She is pictured here, on the far right, with current members of the Hospice Foundation of Cortland County.
It’s not easy to know how to relate to someone who is dying. Do we express our own sadness at the situation? Do we pretend nothing is wrong? Is it appropriate to tell jokes and act silly like we used to do with our loved one? Should we visit more often to show our support or visit less often so as not to tire them out? And what about our own fear and discomfort? Do we give in to those feelings and keep our distance?
These are questions everyone struggles with. I recently saw a helpful article by the American Hospice Foundation that offered suggestions about how to support someone at the end of life. Their list was based on what the dying themselves had requested.
Here are the requests of dying people that struck me especially strongly:
Be honest with me. I can tell when your feelings or actions are insincere.
Laugh with me; cry with me. Allow me to express intense emotions.
Don’t feel sorry for me. Your understanding helps preserve my dignity and pride.
Touch me. I want to be accepted despite the way I may look. Inside, I’m still the same person you always knew.
Let me talk about my illness if I want to. Talking helps me work through my feelings.
Let me be silent if I want to. Sometimes I don’t have much energy and I just may want your silent companionship. Your presence alone can be comforting.
Space your visits and calls. Consistent support is very helpful.
Offer to help me with simple chores. Routine jobs are often difficult to accomplish.
Continue to be my friend. Don’t let my illness overshadow all the good times we’ve shared together. I know this is hard for you too.
I noticed in all these requests that the emphasis is on companionship and understanding. In my own experience with the dying I have seen that it is very important to them to have loved ones to interact with. When you’re supporting a dying loved one, you don’t have to have deep conversations to show your love. Those kinds of conversations are great if they happen, but if they don’t, it’s OK, too. The dying just want to be included in the everyday world of the living and not isolated.
When my own mother was dying, my siblings and I spent much time with her. We would take turns sitting by her bedside, and we would talk amongst ourselves about everyday things. She would listen and join in occasionally. Sometimes she would doze and then wake up to our conversation again. There was an inclusiveness to my mother’s last days, a continuing of the life we had always shared with her. It is a memory I cherish.
Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the September 2, 2017, issue of the Cortland Standard.
Linda Haylor Mikula, former Hospicare Board member and current Women Swimmin’ committee member, sees the deep connections between Hospicare and our community as something very special. “At every Women Swimmin’ meeting, a Hospicare staff member reads a letter sent by a patient or a patient’s family member,” she says. “Those letters hit my heart. I realize every time how much this organization does for those who are dying and for their families who are dealing with that.”
photo by Jon Reis
Linda’s appreciation for Hospicare’s work in the community has led her to contribute to our mission in many irreplaceable ways. If you’ve ever noticed Hospicare’s distinctive postcard annual report, or found yourself attracted to the professional design of the Hospicare print newsletter or proudly worn one of the many Women Swimmin’ tee-shirts, you’ve been touched by some of Linda’s volunteer work. She has been using her professional design skills to support our work for nearly 10 years. Linda has also been the chair of the Hospicare events committee for many years, and this year she is the co-chair of the Women Swimmin’ committee. Her first involvement with Hospicare began in 2008 when she revamped the print newsletter’s design and helped with Hospicare’s brand development. “It’s hard to say ‘no’ to Hospicare,” Linda says.
Both Linda’s father-in-law and sister-in-law were cared for by Hospicare until their deaths. Her father-in-law’s experience in particular had a profound effect on her. “My husband’s father was in the Hospicare Residence,” she recalls. “That was when I really learned what Hospicare is. When my husband saw his father hooked up to machines in a hospital, he couldn’t let his dad go, but when his dad moved into the Residence, that changed how my husband felt. His father was finally comfortable. When you see a loved one on hospice services, whether in their own home or the Residence, there’s just something about the comfort that helps. I think it makes it easier to say goodbye. It was a magical moment to see my husband accept and let his father go.”
Although Linda recently left the Hospicare Board of Directors after serving the maximum of two three-year terms, she doesn’t plan to curtail her involvement with us. “I joke that when I retire from Cornell, they better have a desk ready for me at Hospicare,” she says. “The staff at Hospicare are a special group of people. I feel like I’m part of their family and part of a big community, and that’s a wonderful thing. It’s nice to know that you’re giving back.”
Home is where my heart is. When I’m home, I’m comfortable. I get satisfaction out of sitting in my favorite chair, looking out the window at my backyard, even eating off the plates my wife picked out. I imagine if I were dealing with a terminal illness, little things like that would matter even more. Recent polls show that approximately 80 percent of Americans want to die at home, and I imagine their reasons are similar to mine.
But the statistics show that most Americans don’t actually die at home. In fact, only 20 percent have the privilege of taking their last breath in the comfort and familiarity of their home. There’s a big difference between what we want and what actually happens.
As a doctor, I saw patients and families wrestle with this dilemma. Often the patient ended up in the hospital, sometimes multiple times in the course of the illness, and the family and medical staff did all they could to keep the patient alive even past the point where curative treatments were an option. That frequently meant longer hospital stays and more extreme measures that made it difficult or impossible for the patient to return to their own home.
It doesn’t have to be this way. If you want to die at home, begin telling your loved ones about this desire as early as possible—even before you have a life-threatening medical condition. The more you talk about your wishes, the more your loved ones will understand the importance you place on it. And there’s something else you can do—something that can have the greatest influence on whether you die at home or not. If you or your loved one should have a life-threatening illness, consider calling in hospice as soon as you are able. (Remember, Medicare and most insurance policies will pay for hospice once a physician has determined the patient has six months or less to live.) In Tompkins and Cortland Counties that means calling Hospicare.
Like all hospices, Hospicare uses a team approach. Along with a doctor whose specialty is end-of-life care, they provide specially trained nurses, home health aides, spiritual care experts, bereavement counselors and other healthcare experts. All of these highly trained professionals are focused on keeping the patient comfortable and helping their family members cope with this highly stressful situation. They not only know how to care for people in their own homes, they are dedicated to helping patients die there if that’s what the patient wants.
They are also experts at pain and symptom control. I’ve seen patients’ comfort improve considerably once they’re receiving hospice services. I’ve also seen their family members breathe sighs of relief as hospice team members ease the burden of care. Looking back on my patients who died at home, I can’t remember any situation where that decision turned out to be the wrong one.
Hospicare has a motto I always find uplifting: “It’s about how you live.” Dying at home surrounded by the people and things we love is one way to celebrate life all the way until the very end.
Pat Hayes, MD, is a retired physician from Cortland County. He serves on the board of directors for the Hospice Foundation of Cortland County and was the board president in 2015. He currently writes a monthly column with Jackie Swift on hospice for the Cortland Standard. This article first appeared in the February 4, 2017, issue of the Cortland Standard.
“Facing the end of life takes courage, perhaps especially for the family members of patients,” says Pamela Goddard, Hospicare volunteer. “Facing that approaching loss is a difficult thing. But, we don’t have to face it alone. This is the real gift of hospice services—support for both patients and their family members at every step of the way. And, with support, we can find comfort and even beauty in coming to terms with end-of-life and the process of grief.”
Pamela helps offer that support and comfort to others by her involvement with Hospicare. She sings with Hospicare’s monthly Women Singin’ group and with Schola Cantorum, a smaller group that sings at the bedsides of patients. She also takes part in vigils, sitting beside dying patients who do not have friends or family who can be with them in their final hours. On June 10, she will co-facilitate “Gathering the Pieces” with Elaine Mansfield, a workshop for grievers that focuses on ritual, simple mindfulness meditation techniques and shared experience. Pamela will be focused mainly on leading the meditation portion of the workshop, building on her experience as the co-facilitator of a community mindfulness meditation group that meets once a month at the Nina K. Miller Hospicare Center in Ithaca.
All of these activities express her gratitude for Hospicare, she says. “I’m grateful for the comfort and relief that Hospicare brings to friends and their families. I’m grateful for the home Hospicare has provided our meditation group. I’m grateful for the many ways that Hospicare serves our community, and for the many ways the community serves Hospicare. This mutual, vital interconnection is a really beautiful thing.”
Pamela has had friends who have been cared for by Hospicare, and her mother-in-law also received hospice services in New York City, so she has experienced first hand the value of hospice for those who are terminally ill. “I’m a strong believer in the value of respectful palliative care at the end of life,” she says. “I’ve seen how people dear to me have been able to transition with dignity, each in their own way. The ability to make personal choices about how to die, to have some control over this crucial time of life—for the individual and also for family—and to have caring, professional support is such a gift.”
Volunteering with Hospicare has been deeply moving and also fun, Pamela says. “It may seem odd to use the word ‘fun,’ when talking about working with the dying and their families” she admits, “but there’s often humor and lightness in what we do.” Music especially plays a powerful part in her volunteer experience. “It is a heart expanding honor to bring peace, beauty, and even moments of joy, at the end through the power of music,” she says.
Gail VanPatten served on the Board of the Hopsice Foundation of Cortland County. She wants everyone to know about the help and comfort that is available to them through Hospicare. She is pictured here, on the far right, with current members of the Hospice Foundation of Cortland County.
