How to Talk to Your Proxy About Your Advanced Care Wishes

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

One thing that’s important to remember when thinking about advanced care planning is that it’s not just about end of life. In reality, it’s about how you’re living now. It’s about making sure everyone is ready to make decisions on your behalf when you’re unable to communicate — even temporarily while you’re recovering from an accident, surgery, or debilitating illness.

Several years ago, 83-year-old Ella fell and severely broke her shoulder. In the hospital and loaded up on pain medication, the usually cognitively sharp Ella was unable to think clearly. She couldn’t understand the surgical options being presented to her and couldn’t communicate which surgery she preferred. Fortunately, she had talked to her legally appointed health care proxy about many different things including how important quality of life was to her. That information, including knowing something about Ella’s hobbies and interests, allowed her agent to advocate for an extensive surgery that allowed Ella to resume all her activities, including driving. Had the proxy not been informed and kept up to date on Ella’s wishes as they evolved, the proxy might have allowed the physicians to perform a lesser surgery that would have severely limited the very active Ella’s independence.

There is no question conversations about our advanced care wishes are hard. Making decisions about future scenarios isn’t easy. It’s scary for us to think about our own misery and it’s daunting for our proxy to consider our suffering. But the talks are totally worth it. In fact, doing so will minimize our distress and give our agent the confidence they are making the right decisions — some of the hardest he or she will ever have to do.

Once you’ve identified the person you want to represent your wishes — someone who can make difficult decisions, can advocate for you, and who knows your values — it’s time to have “The Talk.”

Talking about your advanced care wishes

There is never the perfect moment to begin the conversation. And it may happen over time — in several conversations rather than one. But a good way to start with the person you’ve selected as your agent is to frame it by saying, “I’d like to talk to you about how I want to live.”

  1. Be direct.
  2. Talk about a situation that someone else, such as a friend or relative, has experienced.
  3. Speak about your values — what makes your life worth living?
  4. Discuss what brings you comfort and joy — your interests, likes, and dislikes.
  5. Talk about what health, sickness, and death mean to you.
  6. Talk about pain. Do you want to be able to communicate while being treated for pain even if it means you might still be uncomfortable? Or would you rather be sedated and pain free?
  7. Consider life support treatments and reveal where your views on them come from. Share under what situations you would want to be on life support — such as a device to help you breathe, nutrition and hydration through a tube, CPR, etc. — and when you might want nothing to be done.
  8. Make sure to address your religious beliefs, if any, regarding healthcare decisions.

Part of this discussion should also address care at the end of your life. Things to consider include:

  1. Do you want a religious or spiritual leader to visit with you?
  2. Do you want music, candles, incense, and dim/bright light in the room? Specify the kind of music you like, the candle/incense aroma, and whether the light should be natural or artificial.
  3. Do you want to know when death is approaching so you can tie up loose ends and say goodbye to friends and family?
  4. Where do you want to die (hospital, hospice residence, at home, other)?
  5. Do you want to donate your organs? Are there any limitations?

As time goes by, especially if your health changes, review your advanced care planning wishes. When you’re young, every 10 years is a good benchmark. As you get older you may want to reevaluate even more frequently. Make sure your proxy, family, close friends, and your doctor know of any changes in your preferences.

Resources

The planning you do now will be a gift to your proxy, to those in your life to whom you matter, and to yourself.

Join Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team on March 15, from 5:30-7 for a webinar, Having the Conversations & Organizing Your Info.  To register email jennifer@crcfl.net or call 607-272-0212.

*Jane Baker Segelken, MA, MSW, is part of the Social Work team at Hospicare & Palliative Care Services.

How Patients’ Wishes Can Guide Medical Decision Making

By Jane Baker Segelken, MA, MSW, and part of the Social Work team at Hospicare & Palliative Care Services

Jane Segelken, MA, MSW

With the new year upon us, one of the kindest favors we can give the important people in our lives is information on the kind of care we wish to receive if we become ill or incapacitated. Letting them know our care plans and wishes in advance is a true act of love. Doing so takes away some of the burden and stress by allowing them to focus on us without the preoccupation of making decisions we haven’t discussed with them.

For anyone over the age of 18, advanced care planning is the process that allows us to make decisions about our future health care. It is a way of providing guidance for decisions that may have to be made when we are unable to make and/or communicate them on our own. The preferences are noted on legally recognized documents; then the choices are communicated to family/friends and health care providers who are appointed to be the decisionmakers.

While we often think about advanced care planning as part of end of life, there are times when you might be unable to make decisions because you are taking medications that make you fuzzy headed or are in severe pain that prevents you from being able to focus. Regardless of whether you are needing someone to assist in an emergency or at the end of life, having someone who knows your wishes almost guarantees you’ll be treated the way you want. Without these legal documents, decisions about your care may be made by healthcare providers who know nothing about your values.

Medical Decisions: Choosing Your Proxy and Talking About Your Wishes

When thinking about who you will have as your proxy, also known as an agent, it’s important to select someone who will honor your wishes. While many people choose a partner/spouse or child, they may not be the best ones to make the difficult decisions. What is key is that the proxy be able to determine the kind of care you receive based on your wishes not theirs. Others who can act on your behalf include a friend, lawyer, or someone in your social or spiritual community. Also, name an alternate proxy. Be sure to ask the people you want to appoint as your agents in advance to ensure they are comfortable with the process.

Make sure you have a deep, detailed, and honest conversation with your appointed agents about how you want to be cared for in a medical emergency or at the end of life. Talk about your thoughts, beliefs, and values so your agent can make the kind of decisions you would if you were able. It’s also important to talk about your decisions with your loved ones and your physicians so they can partner with your proxy. The Five Wishes and My Living Voice programs are two excellent resources to help guide you through the process.

Medical Decisions: The Documents

  • A Health Care Proxy is a legal document that designates the person who will make health care decisions only if you are unable to make them yourself. Because it is difficult to know all the choices that will need to be made, it is important to appoint someone you trust and who knows your core values; make sure he or she hears details about your wishes that go beyond what you have written on the proxy form. Keep the original at home; give copy of the completed document to your appointed agent (proxy), your alternate agent, your primary medical providers, and your attorney if you have one. While some people also prepare a Living Will, it’s important to remember that is not a legal document.
  • A Medical Orders for Life Sustaining Treatment (MOLST) form outlines your wishes for the end of life in the event you cannot make this decision yourself. This form is filled out with and signed by your physician and reviewed at least every 90 days. If you do not have a proxy, the MOLST will guide medical decisions. If you do have a proxy, this document can guide their choices on your behalf.
  • A Do Not Resuscitate Order (DNR) determines what life sustaining measures, if any, you would like if your heart has stopped beating and you are not breathing. While a DNR can stand alone, it is also a part of the more comprehensive MOLST form.

Resources

If you need help connecting to resources, or ideas for how to start this process, please contact Hospicare & Palliative Care Services at 607-272-0212 with any questions or visit their website at hospicare.org.

*This article originally appeared in the Cortland Standard on January 27, 2022, as the first of a 12 column series devoted to topics relating to hospice and Hospicare called “Let’s Talk Hospice”.


UPCOMING ADVANCED CARE PLANNING EVENT

Having the Conversations & Organizing Your Info
March 15, 5:30 – 7:00 pm via Zoom

For help with advanced care planning, attend Having the Conversations & Organizing Your Info, an upcoming webinar with Dr. Lucia Jander and the Hospicare & Palliative Care Services’ interdisciplinary team and hosted by the Cancer Resource Center. For more information about this and other event, visit our event calendar.

Why I Work in Hospice (Part 5) – Sarah Nickerson, Communications Coordinator

A Special Blog Series Written by Hospicare & Palliative Care Services Staff

This November, we started a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Because we had such a positive response to the series, we are continuing it past November and into 2022. Each post features a different member of our staff as they share why they love the work they do. In part five of this series, we feature Sarah Nickerson, Hospicare Communications Coordinator.

Sarah Nickerson, Hospicare Communications Coordinator

“Hi, my name is Sarah Nickerson, and I am Hospicare’s new communications coordinator. I spent the summer helping Hospicare’s development team with Women Swimmin’ as the seasonal events assistant, and was hired into my current role by Sara Worden, director of development and community relations, in November. I am so excited to take on this role and help share the amazing work our team does and stories of the people we serve!

My relationship with Hospicare began many years ago. In my early twenties, I accompanied my mother, who was a Hospicare volunteer, to a bereavement group for children held at the residence on Kind Road. A few years later, I proudly waited on shore while she swam across Cayuga Lake as a participant in Women Swimmin’ for Hospicare. In the summer of 2018, my mother was diagnosed with a terminal brain tumor and given less than a year to live. We were fortunate enough to be able to move her into Hospicare’s residence for the final months of her life. Having my mother in care at the residence allowed us to be with her as loved ones and not caretakers, which we were ill equipped to be. Hospicare became a home away from home in those last two months before my mother’s death: a safe space filled with love, where I could be nurtured by community.

The amazing care that was given to my mother and to our entire family by Hospicare’s staff stays with me and is why I am so honored to be part of this team today. I look forward to continuing to help Hospicare provide our community with compassionate end-of-life care and grief support.”

I took this photo of my father holding my mother’s hand while she was in care in the residence at King Road just a few weeks before her death on Valentine’s Day of 2019.

***If you have a hospice or Hospicare story you want to share, please email Sarah Nickerson at snickerson@hospicare.org for more information or send a letter to:

Hospicare & Palliative Care Services

Attn: Sarah Nickerson

172 East King Rd

Ithaca, NY 14850

Why I Work in Hospice (Part 4) – Anna Osterhoudt, Social Worker

A Special Blog Series in Honor of National Hospice and Palliative Care Month

This November, we are sharing a special blog series written by Hospicare staff in honor of National Hospice and Palliative Care Month. Each post will feature a different member of our staff as they share why they love the work they do. In part four of this series, we feature Anna Osterhoudt, Hospicare Social Worker.

Anna Osterhoudt, Hospicare Social Worker

“My name is Anna, and I am one of three social workers that are a part of the Hospicare team. My role as a hospice social worker is to assess the needs of our patients, their families, and support systems and provide any assistance I can. A few examples of things that I may assist with are providing emotional support to patients/caregivers, connecting them with community resources, assisting with end-of-life planning, or just being a friendly face during what can be a very difficult time.

I have been working professionally as a social worker in the medical field for the last eight years. However, I only recently joined Hospicare & Palliative Care Services three months ago. Making the decision to join Hospicare was not a difficult one as I have grown to be very passionate about hospice work, both professionally and personally. It is truly an honor and a blessing to be on this journey and to be a part of someone’s final chapters on this earth. 

With the right support, death and dying can be a spiritual, dignified, and peaceful experience. To be able to be a part of that experience and offer support and solace to patients, caregivers, and families during that time is a privilege that I cherish. It can also be scary, emotional, and trying but what is so special about Hospicare is that no matter what the experience is, which is very different for everyone, we are never alone. As a team we support each other, the patients, their families and caregivers, other agency staff, you name it, we are never left to handle it alone.  So why did I choose to work in hospice? There is a saying ‘Find a job you love, and you’ll never work a day in your life.’ I was lucky enough to find that job with Hospicare.”

The Night You Died – a love story, a poet, and her legacy

By Jen Gabriel

It was a sunny spring afternoon and an unassuming envelope arrived in Hospicare’s mailbox. Inside, a generous check and a single piece of paper. 

“To whom it may concern,” the letter began. “Enclosed please find my final donation. I have a terminal illness and will not be further donating to any organizations. Sincerely, Joyce McAlllister.” 

Joyce’s friend and caregiver, Erin Quinn, said that this effort was Joyce’s way of saying goodbye to the dozens of nonprofit organizations she had supported. 

“Joyce had a soft spot in her heart for nonprofits of all kinds,” Erin explained. “She made small gifts to them her whole life, and when it came time to prepare for her death, she wanted to be sure that her favorite charities knew why her giving would soon stop.” 

In addition to supporting Hospicare and a handful of other local organizations, Joyce made gifts to many animal rescue organizations. 

“Joyce always said, ‘everyone always cares about the elephants and the big cats, but no one ever thinks about the donkeys’,” Erin said, with a chuckle. “She loved her donkeys.” 

Born in Ithaca in 1931, Joyce and her family lived on dairy farms in Groton, and later in Dryden. She graduated with an Ithaca College degree in drama, left the area to live in New York City for a few years, and returned to the Ithaca-area in 1960. It was then that Joyce began a 30-year career at Cornell University.   

Joyce’s strong connection and affinity for Hospicare began in 2004, when the agency cared for her husband John, first at home, and then at the residence.  

“Hospicare did everything right by Joyce,” Erin said. “She felt so supported and cared for, and that meant everything to her.” 

After she retired, Joyce turned to poetry writing. She published her first book of poems at the age of 85.  In fact, it was her 2004 experience with Hospicare that inspired her poem, “The Night You Died.” The poem expresses Joyce’s gratitude for the Hospicare nurse who had sung her husband’s favorite Irish tune with him in the moments before he died. 

A copy of that special poem is below. Joyce’s third book of poetry, published posthumously, will be available for purchase later this year.  

The Night You Died 

Afterwards, they told me  
how you sang your way 
to death, head raised high  
to catch your ever-thinning  
breath, singing melodies you  
learned in youth, forming  
words you watched parade  
across closed lids. 

The Night Pat Murphy Died  
sounded from your bed,  
moved out the door, down  
the hall; your soul followed  
with a will, anxious now to  
find that spot of green you  
knew from birth was yours  
to claim. 

They said your voice was  
resolute and unafraid,  
an Irish tenor making  
song to spend the leap  
from finished life to  
timeless death. Beside a  
stone in County Cork,  
ancestors perched  
and waited.  

End-of-Life During a Pandemic; Norma Helsper Made the Best of it.

By Jennifer Gabriel

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.”  

“I know, sweetheart,” Norma replies softly.  

They lock eyes. 

 “I know.” 

Hospice Utilization Climbs in Both of the Counties We Serve

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.

Our Hospice Angel

Post by Gail VanPatten

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.

What the Dying Need from Us

by Dr. Pat Hayes

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.

A Movement Prayer

By Mimi Quillin

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.

 

Mimi Quillin is a performer, choreographer and writer. Her original play, Dégagé (disengage) will have its world premiere at the Hangar Theatre July 20-29, 2017. Visit the Hangar’s website to learn more and to purchase tickets.

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