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The Hospice Foundation of Cortland County exists to provide comfort to people with life limiting illnesses, encouraging and supporting them and their families to live and experience each day fully.

In 2014, The Hospice Foundation of Cortland County and Hospicare & Palliative Care Services joined forces, and the partnership supports and promotes hospice services throughout Cortland County.

Dr. Pat Hayes has come to the end of his 6-year term as a board member for The Hospice Foundation of Cortland County. During his tenure, Pat was a member of the Buildings and Grounds committee, and also served as president for a year-long term.

“Pat has been a wonderful addition to our board with his medical background and compassion for endorsing Hospice in Cortland County,” said board president Barb Closson. “He is always willing to help out, and quick to say ‘I can take care of that’!”

The Hospice Foundation of Cortland County board is also welcoming back Gail Van Patten – a “super” volunteer who has already served two previous 6-year terms.

“Gail’s commitment to hospice is very clear,” said Barb Closson. “She is very grateful that she was able to utilize hospice services when she needed it for her family and recognizes the need for services in Cortland County.”

For more information about the Hospice Foundation of Cortland County, please visit https://www.hospicare.org/cortland-foundation/

Pictured are 2019 Hospice Foundation of Cortland County Members: Back row: Michael Kilmer, Gail Van Patten (Vice President), Bill Hopkins, Dianne Higgins (Treasurer), Kathy Boyland, Seated: Suzanne Riley, Barb Closson (President), Bev Ryan and Nancy Fuller.

These past few months have been some of our family’s most difficult. But in many ways, they have also been some of our best. As we head into the holidays — a hard time for many of us as we cope with memories of loved ones — I want to share my story with you, my Hospicare family.

My mom — known as Ruthie to all who loved her — lived a long, good life. An amazing, supportive mother to my brother and me, mom enjoyed spoiling her grandkids and great-grandkids.

Playing bridge, bowling, and a series of Boston terriers (all named Muggsy) kept her smiling and laughing. She was so committed to Syracuse University sports that she refused to consider giving up her season tickets until she was in her mid-90s. To support her beloved Orangemen, she never left a game before the final buzzer, no matter how painfully lopsided the score.

Mom enjoyed scotch and martinis. In fact, an extra-dry martini, straight up with a twist, was one of the last pleasures she enjoyed at Hospicare, thanks to the rapid and kind assistance of the staff of Northside Wine & Spirits in Ithaca. 

Last spring, at 98 years old, mom’s health began to decline. She and our family made the decision together to move her to Hospicare for her final days. In the residence, she could still be close to us while being cared for in a quiet, calm, supportive environment. The decision made a huge difference in her quality of life and in the quality of time our family had with her. Instead of worrying about logistics and details, we were able to focus on her and on us and on building happy final memories.

As a board member and the chair of our Development & Community Relations committee, I’m often in a position to talk about why I give to Hospicare. Over the years, I have gotten to see so many amazing examples of philanthropy in action —

but of course, seeing your gifts put to work for my mom and our family brought it home in a striking and vivid way.

When you make a gift to Hospicare, you support patients and their families in many ways. You supply medications and medical equipment to make patients comfortable, and you soothe their souls with music and companionship. You provide meals, personal care and help with household tasks to ease the stress on caregivers. And you offer counseling and spiritual support to patients and bereavement services to their families as they transition to a new chapter in their lives.

Your gifts matter, and I hope you will join me in making a donation to Hospicare before the end of the year. Together, we ensure that every member of our community can live out their final days with peace and dignity, and that their families are emotionally supported through the journey.

I expect my grief will continue long into the new year, but my sadness is tempered by the wonderful laughs and sweet moments my family and I shared with mom in her final few months, thanks to Hospicare… and to you. Thank you!

(Make your end of year gift here, by sending a check to Hospicare, 172 East King Road, Ithaca, NY 14850, or by calling 607-272-0212.)

Hospicare Executive Director Dale Johnson announced recently that he will retire March 15, 2019.

Dale has been with Hospicare for nine years after initially accepting an interim position as executive director and we are so grateful for his work. “I did not intend to stay but found myself enjoying the agency, the people, and this community more than I expected,” Johnson said. “So I threw my hat in the ring and was hired as executive director shortly thereafter. It has been an incredible experience for me and a pleasure to work with such good people, the volunteers and dedicated professionals on the clinical and support staff.”

Board President Loren Gardner said a search for a new executive director is underway. “I will miss working with Dale and am grateful for his service over the last several years,” Gardner said. “I am pleased that we will have the benefit of his unique expertise until March. He has done a lot for our community through his work at Hospicare.”

Hospicare and Palliative Care Services provides services in Cortland and Tompkins counties to more than 500 patients and their family members annually.

During Dale’s tenure, he has overseen a complex and shifting state and federal regulatory environment. He has managed substantial agency growth with the 2014 merger of the Cortland County hospice program. In 2018 the Palliative Approach to Health (PATH) program was introduced, significantly expanding access to palliative care services.

Dale’s reputation for advancing the work of hospice and palliative care extends well beyond Cortland and Tompkins counties. He is a founding board member of the Foundation for Hospices in Sub-Saharan Africa that has formed more than 75 partnerships between US and African hospices.

He recently was awarded the 2018 Carol Selinske Founders Award by the Hospice and Palliative Care Association of New York State (HPCANYS) for “outstanding efforts on behalf of hospice and the needs of the terminally ill in New York State.” He has served as HPCANYS chair, vice-chair, board member, and member of several committees. Since 2012, he has been co-chair of the Federal Legislative/Regulatory Committee. Trained as an attorney and as a member of the NYS bar, Dale has provided a legal perspective on pending legislation and is serving on a task force that will propose changes to the state’s regulatory process that leads to adding health care services and facilities.

There’s an expression we say in Upstate NY: “If you don’t like the weather, just wait 5 minutes.”

The morning of August 11 certainly tested that adage! Changing and uncertain weather conditions brought extra challenges for the 15^th annual Women Swimmin’ for Hospicare. Rain and wind can’t alter the amazing sense of community that happens at Women Swimmin’, though! Whether they swam or not, boated, volunteered, or just cheered from shore, everyone present was there because they support Hospicare’s mission to provide personalized care that allows patients to live their lives as fully and peacefully as possible, regardless of cost.

Women Swimmin’ is a community swim—not a race—to raise money for Hospicare. We’re always amazed and honored by the way our community comes together to help make Women Swimmin’ happen. The safety of our swimmers and boaters is always paramount in planning and executing Women Swimmin’ for Hospicare. We’re fortunate to have a community of experienced and dedicated supporters and volunteers who help refine our safety procedures each year. Huge thanks to all of them, from the volunteers and staff from the Cayuga Lake Watershed Network, Community Science Institute and Discover Cayuga Lake who were on alert for harmful algal blooms (HABs), to the Coast Guard Auxiliary and NY State Park police who were on alert for other risks in the water; from the lifeguards, boaters and volunteers who watched out for our swimmers, to emergency personnel from Bangs Ambulance who watched over everyone. This year, especially, we’re grateful for the knowledge and alerts we receive from experts at Cornell Meteorology.

We delayed the start of the swim to see what the weather would do, and thankfully thunderstorms passed us by. The first wave of swimmers excitedly boarded buses that took them to the entry point on the east shore and the swim commenced! Sadly, by mid-morning the weather had changed once again causing the conditions on the lake to deteriorate and forcing the cancellation of the last wave of the swim.

Altogether this year, 389 women registered to fundraise and swim for Hospicare. Some of those women are wives, daughters, sisters, granddaughters or other family members of people who received hospice services. Some of them are friends who joined together to swim and fundraise in memory of a special friend or loved one. Some of our swimmers have personally benefitted from the support our bereavement services team provides anyone in our community who is grieving a loss. Of those 389 women: 32 swam laps across NY and around the country (including 2 who were also boaters!); 288 showed up ready to swim across Cayuga Lake; many had to cancel for health or personal reasons before the lake swim. Some of the swimmers who weren’t able to swim across Cayuga Lake for Women Swimmin’ swam laps in local pools as they thought about loved ones in whose memory they had fundraised. Other swimmers opted to swim in Cayuga Lake or other bodies of water on their own.

Everyone at Hospicare is extremely grateful for the time, commitment and energy all of our swimmers, boaters and volunteers put forth to make Women Swimmin’ for Hospicare possible. Thank you to the friends and family who donated in support of a swimmer, and also to the corporate sponsors and underwriters who covered the expenses associated with the event. We truly could not support our community in all the ways we do without your amazing support.

Thank you!

In August, Hospicare welcomed two new individuals to the Development & Community Relations team. Jennnifer Gabriel is the new Director of Development & Community Relations, and Barry Miller is the Database Coordinator and Development Coordinator.

A native of the Ithaca area, Jen brings 20 years of fundraising and communications experience to Hospicare. She graduated magna cum laude with a B.S. in news & editorial journalism from Boston University, and began her professional career as a press assistant and speechwriter for Boston’s Mayor Thomas M. Menino. Jen has also held leadership-level positions at several organizations, including the National Sports Center for the Disabled (Winter Park, CO), the Boulder Shelter for the Homeless (Boulder, CO), and Children’s Hospital and Research Center Foundation (Oakland, CA). For the past nine years, she worked in Ithaca College’s advancement office, specializing in leadership, major and planned giving.

Jen’s connections to Hospicare began in 2010, the first year she volunteered as a kayaker for Women Swimmin’. In her spare time, she and husband Scott work on the 1836 Methodist-Episcopal church they call home and enjoy spending as much time outdoors as possible.

Barry comes to Hospicare with many years of computer-related experience, including database design and management, proprietary software implementation, web development, and content management. He is also a writer and editor, having served as production editor with the Ecological Society of America, data manager and reporting specialist with the Alaska Cooperative Extension Service, and editorial assistant with the University of Alaska Fairbanks Geophysical Institute. In his spare time, Barry enjoys preforming with various local blues and alternative rock groups.

Jen and Barry join Johanna Zussman-Dobbins, who continues to serve as the Communications & Outreach Manager. Together with an Events Coordinator to be hired later this year and the support of many staff and volunteers, the Development & Community Relations team is poised to increase awareness and philanthropic support of critical programs that provide hospice and palliative care services, as well as grief and support services, to all members of our community.

Each year, on an evening in early June, the grounds of the Nina K. Miller Hospicare Center on Ithaca’s South Hill glow with light. Visitors stroll our garden paths, which are lined with 300 luminarias, many dedicated to someone who has died. As the evening concludes a lighted canoe glides across our pond while a trumpeter plays “Taps,” and all who are in attendance pause to remember someone they love. This is Hospicare’s spring community memorial event: Illuminations.

This year’s Illuminations event will be held on Thursday, June 7. A reception and luminaria lighting begin at 7:30 p.m. A special program of remembrance starts at 8:00 p.m. Illuminations is held rain or shine. In case of inclement weather, the program moves indoors to the Hospicare Great Room. The event is open to the public. There is no cost to attend, although luminarias can be personalized for a suggested donation of $25. (Donations are greatly appreciated, but not required.)

If you are grieving the loss of a loved one, whether the death was recent or many years ago, and regardless of whether your loved one died on hospice services, we invite you to join us. Come experience the peace and beauty of the Hospicare gardens. Light a luminaria in memory or in honor of a loved one. Most importantly, share in the sense of community with others who are also grieving a loss.

If you would like to join us or make a contribution to have a luminaria lit in memory of someone you love, please RSVP online.

My last blog ended with questions about steps to take after my mother-in-law Virginia became a Hospicare patient. Even though I’m a Hospicare volunteer, I didn’t know we would receive so much practical and emotional support.

Should my elderly family member stay in her own apartment?

When I told our Hospicare social worker how much money remained in Virginia’s accounts, she advised me to consider a move.

“You need to deal with this,” she said. “If a patient is already on Medicaid rather than private pay, nursing home placement is more difficult. You may not get to choose the place you want.”

I was grateful to know, but unhappy about the tasks ahead. I didn’t want to gather and organize five years of financial records for Medicaid application. I didn’t want to clean out Virginia’s apartment and deal with her possessions.  I didn’t want to upset Virginia by moving her out of her apartment where she had 24-hour private care.

While dealing with Virginia’s day-to-day needs, I’d avoided making definite plans for her future. I hadn’t imagined she would outlive her funds, but she turned 102 in January. We couldn’t continue on the same path because we couldn’t pay for it. Virginia would need Medicaid support by early summer. I learned that having money to pay for private care for even a few months gave us better choices, so I knew it was time to move.

Making a Move

I talked with our Hospicare social worker on Tuesday, talked to the nursing home social worker on the phone on Wednesday, had application forms sent by email and filled out by Friday when I visited the nursing home. The nursing home social worker said a rehab patient would leave on Monday, so they had a bed available for a private pay patient. She had no idea when they’d be able to accept another patient since the facility is small.

I decided it would lessen the pain to give the health aides severance pay and move quickly.  With my head spinning, I said yes to the inevitable.

Hospicare Support during and after the Move

The first issue was how to move Virginia physically. Our hospice social worker told me Hospicare would arrange a wheelchair transport with Bang’s Ambulance Services. On Monday morning, the ambulance driver arrived. With me carrying clothing and personal items and a good friend with us for support, Virginia and I entered her new world.

A Hospicare nurse continued weekly visits at the nursing home. Virginia received visits from the same volunteer who brought her therapy dog along. I hired Virginia’s main health aide from her old residence to visit, and I visited often. With daily support, Virginia made the transition fairly easily. Maybe short-term memory loss helped.

Getting Help with Medicaid Applications and More

After moving Virginia, I hired her previous health aide to empty and clean her apartment. I also got help from my son and a few of his friends. One step at a time and a few weeks later, we handed in the keys and left Virginia’s old life behind.

At the same time, I changed Virginia’s mailing address, cancelled her phone and cable service, and transferred her investments to one easy to access account. The nursing home suggested a Medicaid adviser who works with their patients. After an email conversation in early March, I gathered the needed information. In a few weeks with Hospicare helping me over the bumps, I had most of the needed information and knew the rest was on the way.

Should I Talk with Virginia about her Son’s Death?

Although Virginia first refused to talk to the Hospicare spiritual advisor, I convinced her to give it a chance. This wonderful counselor asked Virginia if she would talk to a priest. Virginia said yes. After ten years of being angry that her God didn’t save her son from cancer, Virginia began making peace with her spiritual roots.

The Hospicare physician advised our family to speak to Virginia openly about her son’s death since the dying often wait for someone they love so they can say goodbye. With a little prompting and some tears, Virginia began talking about her only child’s death. Her grief surfaced without the anger she’d expressed in the past. Even at 102, a new perspective came in about mortality. After asking about her son and others who had died, she said, “We live and then we die.” She repeated this phrase many times.

“It’s such shame,” she said. “I loved him with all my heart.” After that first breakthrough, Virginia continued to ask, “Where’s Vic?” We repeated the conversation as she made peace with the most crushing loss of her life.

In six weeks, we’d made necessary moves with the minimum of upset for Virginia. I’d worked hard, but those steps had to happen sooner or later. Virginia was in a kind and safe residence where it’s easy for me to visit. With Hospicare advisors, we had constant support through this transition. Not just support for Virginia, but support for me.

Virginia continues her slow decline with some weight loss and more sleeping. As you might imagine, I’m sleeping better, too.

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(This article follows information about the PATH or Palliative Approach to Health found in “Why It Helps to Understand Palliative Care Options before We’re Sick.)

I wasn’t surprised my mother-in-law Virginia wasn’t eligible to be a hospice patient despite her age (101), blindness, and frequent falls. She had no life-limiting diagnosis and no weight loss. She still enjoyed pancakes and pasta. Even though she wasn’t accepted as a patient, the Hospicare nurse who did the evaluation had a reassuring conversation with Virginia’s main health aide and me about managing Virginia’s symptoms.

We also registered Virginia in PATH (Palliative Approach to Health). The nurse who evaluated her promised to assist when needed. Now I had someone to call when we needed help.

A few months later, Virginia experienced shortness of breath. Her (privately hired) health aide called Virginia’s doctor who recommended the ER. After eight hours of exhausting tests, they found amazing health for a woman of 101. Strong regular heart, lungs with a little extra fluid, memory loss but alert, nothing life-threatening.

The cause of the breathing problem? Probably anxiety.

Our PATH nurse came for a second Palliative Care consultation after that day in the hospital. She recommended that Virginia try a medicine that the doctor had already prescribed before taking Virginia to the ER. She also recommended we ask the doctor for a community Visiting Nurse so we had more help monitoring Virginia’s health.

Because of these PATH recommendations, the doctor ordered a weekly visiting nurse. Because of our discussions with the Palliative Care team, everyone involved had shared goals: No hospitals. No unnecessary medical tests. Make Virginia comfortable and happy. Cook pasta.

After the visiting community nurse joined our team, things were quiet for a few months, but in time Virginia had a new breathing problem. The palliative care nurse returned to re-evaluate and because of shortness of breath and other cardiac symptoms, Virginia became a hospice patient.

Because the nurse already knew Virginia and her health information, the transition to hospice was seamless. Within days, we had a social worker, spiritual care coordinator, hospice aides as needed, a weekly visit from the hospice nurse, and a volunteer who brought Italian pastry and spoke Italian, Virginia’s childhood language.

With all this loving support, Virginia’s lungs cleared. It’s true. Becoming a hospice patient prolongs life. I knew Virginia would remain on service for three months before the next evaluation. During those months, I grappled with the long-term issues of Virginia’s life, things that felt too difficult to face on my own. Information and support poured in.

Could we eliminate some of the medication that had accumulated over the years? Was it helping her or making her sicker? Conferring with Virginia’s doctor, the hospice nurse lowered her prescription drug load. Her breathing improved.

Was it good to keep her in her apartment or should I move her while she still had a little money left for private pay at a nursing home of our choice? When should I apply for Medicaid?

Should I try to re-connect Virginia with her religious roots because I hoped it would comfort her and help her accept her son’s death? After his death ten years ago, she had refused to see a priest because she was angry that her faith hadn’t protected her from loss.

Should I talk to Virginia more about her son’s death to make sure she wasn’t waiting for him to say goodbye? Or should we avoid discussing this because it upset her?

How about me? I was exhausted with caregiving. Hospicare considered my needs along with Virginia’s. They watched out for me, too.

We had decisions to make. We were depleting Virginia’s savings to pay for 24-hour health aides. We needed a long-term plan. With the support of a terrific social worker and nurse, information flowed in. My sons and I discussed what to do now that Virginia seemed to be getting stronger even though she would always need 24-hour care. We needed to protect her and also protect me. Hospice held our hand every step of the way.

In a later article, I’ll let you know what changes we made and how our situation unfolded.

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