Hospicare wishes Jayne Demakos much joy and happiness as she embarks on a new adventure – and her dream job as a full time music-thanatologist! Jayne will be providing her beautiful harp music to patients and families at St Peter’s Hospital in Olympia, Washington. So many Hospicare families have benefited from Jayne’s music and compassion for many years, and she will be sorely missed by our community. Best wishes to you, Jayne!
From all of us at Hospicare, we are grateful for each one of you and couldn’t carry out our mission without you on the Team! Thank you from the bottom of our hearts!
My best friend of 30 years – the woman who knew more about me than just about any other human – died in 2017, just a few days after Thanksgiving. She had brain cancer, so her death wasn’t a surprise, but I still wasn’t prepared for the pain. At times, the grief felt so heavy on my chest that I wondered if I might suffocate.
After the funeral, I shuffled through the busy holiday season, pretending I was okay. Close friends saw through the fake smile, and they checked in frequently. Their compassion and understanding are the only things that got me through all those parties and all that cheer.
The new year began, and people largely stopped asking me how I was doing, as though flipping the calendar to 2018 was a way to leave my grief in 2017. That’s ridiculous, of course, but I still felt alone.
As so many of you know, overcoming grief and moving forward is a lot of work. I could write a memoir about the time between those dark nights and August 27, when I started as Hospicare’s new Director of Development & Community Relations.
New years are often a natural time for reflection. There is no shortage of material as I survey these past 12 months, which includes my first four months at Hospicare.
For starters, I don’t feel alone anymore. That’s because of you.
Through your actions, your advocacy and your generosity, you show compassion for people in our community with life-limiting illnesses, and their families and friends.
You volunteer to serve and comfort patients and give loved ones a chance to run errands without worry. You make meals. You hold hands. You bring your therapy dogs to visit our residents, and never forget to stop by the office area for some cuddles.
You support each individual through the grieving process. While the calendar pages may continue to flip, you understand that grief is different for each person, and it can never be completely left behind.
You show up, even on holidays, to serve patients with a smile. You brave snow-packed roads to ensure that no family is without the support they need in a difficult time. You rise before the break of dawn to swim or boat across Cayuga Lake in the name of Hospicare.
You make contributions that ensure Hospicare can offer the very best of care. You gift us items from our wish list so that we are never without soft tissues, hot tea, or suet for the birds in the back yard. You ensure that no one is turned away at our residence because of a lack of funds.
You are Hospicare. You make our mission possible.
I joined Hospicare because I felt I had a desire to help raise awareness and funds for an organization that does so much for our community – work I got to see firsthand last fall as my friend’s life came to its end. I feel deeply honored and humbled to be here, and to work with and lead a department of talented and committed professionals.
The Development and Community Relations team has lofty ambitions for 2019. Lack of awareness of hospice and palliative care means too many people in our community aren’t accessing services that support and comfort. In the coming year, you’ll be seeing more communications, as well as an increased presence for Hospicare in Tompkins and Cortland counties.
In concert with those efforts will be the work we do to diversify our philanthropic portfolio. Women Swimmin’ is an event that most nonprofits can only dream about, and it will be a part of the fabric of our fundraising energies for years to come. At the same time, we’ll look to grow other areas, including seeking foundation grants and corporate sponsorships. We also want to launch a program to recognize those individuals who have named Hospicare in their wills.
Of the many things my best friend taught me, one of the most valuable lessons was how to live an authentic life. There’s no question in my mind that as I work at Hospicare, I am honoring her, our friendship, and the community that helped shape us both.
I look forward to sharing more about our work in the months to come, and I urge you to reach out to me with your ideas and connections. I can be contacted at firstname.lastname@example.org or 607-272-0212.
And finally, for those of you who are grieving a loss, no matter how recent, we are here for you. These post-holiday winter months can be difficult, and we invite you to reach out to us whenever you need support. You are not alone.
Thank you again for your commitment to compassionate end of life care, and for welcoming me so warmly into the Hospicare family. I wish you and yours a happy and peaceful start to the new year.
No one swims alone. I can’t even begin to count how many times I’ve said or typed that phrase in the seven years I’ve worked at Hospicare and been involved with Women Swimmin’ for Hospicare. It’s an important part of our Women Swimmin’ event—that no swimmer should be alone as she crosses Cayuga Lake. She should always be with an escort boat and ideally with other swimmers. Many swimmers and boaters say their favorite part of Women Swimmin’ is the community of the event and seeing so many other swimmers and boaters around them in the lake. It can be intimidating to be in the middle of a big, deep lake, but our swimmers are not alone out there.
The women who are swimming laps as part of Women Swimmin’ Laps for Hospicare are also not swimmin’ alone. They’re in pools with a certified lifeguard watching to make sure they’re safe. Some laps swimmers are part of a Women Swimmin’ team, who are fundraising together. Even if each swimmer is swimming her laps solo, she joins in the sisterhood of Women Swimmin’ for Hospicare. She is swimmin’–just as 1400 other women have swum over the years—to raise funds that support quality, end-of-life care for our community. While she swims her laps, she carries with her the memory of friends and family who have been served by Hospicare.
I’ve come to learn, and our Women Swimmin’ participants know or have learned, that “no one swims alone” is not just a Women Swimmin’ protocol but also a mantra for hospice care. Our staff and volunteers work together, as a team, to care for and support our patients and their families. Hospice is unique in that the focus of care is not only the patient’s physical needs, but also their spiritual and emotional needs, and those of their loved ones.
Our interdisciplinary team of staff and volunteers work together to anticipate and meet the various needs of our patients and their families. Some of those needs are medical (medications, medical equipment, personal care); other needs are logistical, emotional or spiritual. Whatever the need, there is someone on the Hospicare team who will make sure that need is met.
The journey of illness, death and grief is a difficult one. Your support of Women Swimmin’ for Hospicare means that our patients and their loved ones won’t have to make the journey alone. Hospicare will be there, with skilled staff and trained volunteers to provide the support, guidance and care that’s needed.
Because no one swims alone.
Melissa Travis Dunham was previously our manager of community relations at Hospicare. She was the event coordinator and helped organize Women Swimmin’ for four years.
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.”
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.”
“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.
by Dr. Pat Hayes
Those of you who know me may have heard me talk about how important volunteers are to hospice. They provide crucial help to patients and their families, especially to family members who are in need of respite. Hospicare & Palliative Care Services, our hospice provider, offers patients and their families the chance to have trained volunteers visit them wherever they live, to offer companionship and a helping hand. Most often this means the visit happens in the patient’s own home, but it can also be in a nursing home or other care facility.
Recently I spoke with Pris Coulter about her experiences as a hospice volunteer in Cortland County. Pris has been a volunteer for ten years; she first started when Caring Community Hospice of Cortland was the county’s hospice provider, and she has continued volunteering with Hospicare. “I’ve visited patients in nursing homes and in their own homes and just chatted with them,” she says. “I’ve sat with patients who could not speak, and I’ve played cards with others.” Sometimes Pris’s visits to a patient coincide with their caregiver’s need to take a break. “I sat with a patient once while her husband went to the funeral home to make arrangements,” she says. “Then there was the patient who was able to be alone, but his wife needed me to take her to the grocery store because she couldn’t drive.”
In the last year, Pris has added a new dimension to her volunteering—helping with bereavement services. Once a month she goes to the Hospicare office in Ithaca to help with mailings to the families of deceased patients, and she reaches out to patient family members through quarterly phone calls for the first year after a death. “I check in with folks to see how they’re doing and to remind them of the bereavement services that are available, like one-on-one grief counseling with Hospicare counselors, or monthly bereavement meetings,” she says.
Pris is used to the surprised reactions when people find out she is a hospice volunteer. “The first thing out of their mouth is, “how can you do that?’” she says. “I explain that it’s truly rewarding to deal with folks who really have a need for your help. It’s an extremely good feeling to know you are wanted and you have a part in helping them through this difficult time. I’m providing something for them they can’t get anywhere else. That’s why I can do it.”
Pris is also quick to point out the benefits of utilizing Hospicare’s services as soon as a person is eligible for them. According to Medicare guidelines that is when a doctor has determined the patient has six months or less to live. The sooner a patient chooses hospice, the more they and their family members will be able to make use of all the services provided. “Hospicare makes things much more comfortable for the patient and family,” Pris says. “If you’re religious, they offer spiritual care services. If you need help with stress or emotional issues, they have counselors for that. They can provide help with logistical care problems. They have so much to tap into.”
Pris is aware that many people are afraid to be around the dying, but she says it’s not an issue for her. “I don’t know what people are afraid of,” she says. “Death is a part of life. It’s inevitable.”
If you’re interested in learning more about volunteering with Hospicare, call 607-272-0212 or visit the volunteer page of our website.
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 March 11, 2017, issue of the Cortland Standard.
by Pauline Cameron, RN, CHPN
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.
We live in a death-denying culture making it difficult to talk about death, to know how to be, and what to say, in the presence of the dying. My mother’s hospice team in Maryland were my first teachers not only about dying, but as it happens, about living too.
I found all of my interactions with the team quite remarkable and unlike anything I encountered with medical and nursing home staff during that period of her life. Only later did I realize I was responding to the quality of their presence—being grounded in the moment, open to whatever happened and completely authentic in their responses.
That quality of presence is the thread I followed from my mother’s death, to volunteering with Hospicare in direct patient care and sitting vigil, and more recently, to completing the Contemplative End-of-Life Care (CEOLC) Certificate Program for health care professionals and hospice volunteers.
The program integrates the spiritual dimension of dying and death with the practical aspects of hospice and palliative care. The instructional methods included individual study, online interaction with other students and instructors, an 8-day residential retreat, a daily contemplative practice, self-reflection and journaling.
We built skills for communicating about dying and death; helping patients find new meaning; facilitating the process of resolving unfinished business; and supporting the bereaved. We explored different cultural attitudes, religious beliefs and practices about dying and death. We examined our own attitudes about death and explored ways to prevent burnout.
At the heart of the program is the cultivation of compassionate presence—referring to how we are when providing care—being in the present moment fully attentive, receptive and responsive to patients and their families.
“Extending our compassionate presence to a fellow human being is a simple act. There is nothing special about it. It requires a willingness to be aware, open and loving. This is not always easy. We are required to drop our habitual ways of doing things and any agendas we may have… We may think that we can do “compassionate presence” by assuming the right outer appearance, … The truth is, we cannot do “compassionate presence”, we can only be compassionate presence.”
—Kirsten DeLeo, CEOLC Instructor
The course took me on an incredible personal journey and provided a very useful set of skills to integrate into my work as a hospice volunteer. It also reminded me of the importance and value of being fully present in the moment, the need to be comfortable with silence, and the power of truly listening not only when we attend the dying, but at all moments and in all situations.
Angela Mennitto is a Hospicare patient-care volunteer. This article about her experience previously appeared in our e-newsletter.
by Lisa Schwartz, RN
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.