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.

Recovering Your Creative Spirit in Grief

by Brenna Fitzgerald writer, editor, coach, and host of Creative Recovery podcast

Grief is a process that may involve conflicting emotions and can often feel uncomfortable and confusing. It’s natural to want to close down, shut off, and stop this unpredictable flow, especially in a society that expects grieving to happen in a certain linear timeframe and pathologizes anything outside of that.

Brenna Fitzgerald

I recently listened to an interview with grieving expert David Kessler, author of Finding Meaning: The Sixth Stage of Grief. He talked about the desire grieving individuals may feel to make the grief smaller in some way and offered an insightful alternative perspective to this reaction. “Rather than make the grief smaller,” he said, “we need to make ourselves bigger. Grief is love, and we don’t want it to get smaller.” He calls for a transformation of the traumatic wound into the cherished wound.

Indeed, research on grief supports Kessler’s emphasize on the importance of making space for grieving in all its forms. In his book The Wild Edge of Sorrow, psychotherapist Francis Weller writes, “if we ignore the fire, our internal life feels cold and the grief in our container congeals. Offering our attention, affection, and love, on the other hand, feeds the fire, and the gradual work of transmuting grief into gold can commence.”

My own early struggles with depression and an eating disorder as a teenager offered a gateway into investigating grief. Of course, I didn’t know it at the time, so consumed by my own suffering and unprocessed loss. It was not until I had undergone years of therapy in various forms from cognitive therapy to meditation and mindfulness practices to restorative yoga and creative writing that a deeper understanding of my inner world awakened. I realized that my depression and eating disorder were manifestations of stuck energy—of grief—from having experienced trauma in my early years and not having had the tools to process it. I began to realize the importance of practices, and especially practices of creative expression, to help move the complex energies stirred by my losses.

As Weller writes, “we are a menagerie of moods, emotions, thoughts, and selves. For the most part, we keep the unsavory brothers and sisters on the outskirts of town. Practice, however, invites these voices into the mix, recognizing in them an essential element in our well-being. We are asked to welcome the weak and vulnerable parts of ourselves in times of grieving….” I love his perspective and the emphasis on practice as an invitation into such a compassionate view of our grief.

It is through this lens that I created my upcoming workshop “Recovering Your Creative Spirit in Grief.” Grief can cause you to feel stuck, uninspired, and unfulfilled. This impacts your ability to express conflicting emotions in creative ways. In this workshop we will explore the feeling of being stuck and how it affects our inner life and outer expression. Through written reflection, group discussion, mind-body practices, and intuitive collage I will guide participants into a deeper understanding of their own blocks. Together we will create a safe and supportive container for each person to begin the process of shifting from stuck to unstuck. My intention is to facilitate awareness of and curiosity around the needs and desires of your creative spirit and to share tools and practices to help you sustain a nourishing and fulfilling engagement in life well beyond the workshop.

David Kessler says that “each person’s grief is as unique as their fingerprint. But what everyone has in common is that no matter how they grieve, they share a need for their grief to be witnessed.” Research on grief conducted by Robert A. Neimeyer, a psychology professor at the University of Memphis and a clinician, points to this same insight of the need for connection in healing. Great strength, resiliency, and compassion emerge when we can be present to our own self-expression and the self-expression of others, whether in the form of sharing stories around a fire or making collage on zoom.

This workshop is an opportunity for us to come together in community and offer space for one another’s stuck energy to flow in creative ways. May the practices we play with help you connect to a much larger sense of yourself and the world—a self that can hold, in love, the pain of your loss. As one of my favorite writers and thinkers, Audre Lorde, says: “These places of possibility within ourselves are dark because they are ancient and hidden; they have survived and grown strong through darkness. Within these deep places, each one of us holds an incredible reserve of creativity and power, of unexamined and unrecorded emotion and feeling.” I look forward to sharing healing creative space with you at “Recovering your Creative Spirit in Grief” offered virtually through Hospicare on March 3, 2022, from 6:30-8:00 p.m. May we all exceed the limits of our own self-image and awaken to the expansive being within—our inner creator.

EVENT INFORMATION

Recovering Your Creative Spirit in Grief
March 03, 6:30 – 8:00 pm via Zoom

To participate in this event, REGISTER HERE by February 28th. 

To learn about other events offered by Hospicare & Palliative Care Services, visit the events calendar on our website.

Writing Your Loss

By Jane Baker Segelken MA, MSW

Much research has been done about the therapeutic benefits of writing, something I can attest to from personal experience.

My interest in expressive writing began many years ago when I first started keeping an informal journal and wrote about some of my life’s more difficult experiences. While participating in a writing circle, I was diagnosed with breast cancer at age 41. Rather than dropping out of the group I continued, directing much of my time to writing about my journey. To my surprise, I discovered how much better I felt writing and then reading what I had written out loud. Building upon what I learned, I have facilitated numerous writing programs over the years, including several for grieving Hospicare family members.

The Value of Therapeutic Writing

Researchers James W. Pennebaker, Joshua Smyth, and others have shown that recording experiences involving traumatic events, such as illness, care giving, and loss, can help people restore their emotional and physical health. Some individuals report that even their blood pressure drops.

When referring to this type of narrative writing, various terms are used interchangeably: therapeutic writing, expressive writing, reflective writing, and writing to heal. What people mean when they use any of the terms is writing deep thoughts and feelings about stressful events.

Therapeutic writing allows us to process, understand, and resolve the traumatic experience — to gain insight into our feelings and emotions while gaining distance and perspective.

Jane Baker Segelken will facilitate this four week writing program to enable bereaved to tell their story, explore their unique circumstances and use words to heal. Wednesday, Mondays, Oct 18, 25, November 1 and 8, 6:00-8:00pm. 

The Sessions

The most important thing to remember here is that participants do not need to be “writers.” The goal is to write, and it is perfectly acceptable to explore topics other than those I suggest. To be efficacious, participants should plan to attend all four sessions.

The sessions are structured so that each may include a short guided meditation; the reading of a story, poem, or essay; 20 to 45 minutes of writing; and 20 to 45 minutes of reading out loud. Writing by longhand or typing makes no difference in outcome, and participants should write in whatever mode they feel comfortable.

So that everyone feels safe and secure, everything that is said or done in the room stays in the room — complete confidentiality is mandatory. Participants may not comment on each other’s reading other than to say “thank you” to ensure that no one receives feedback that isn’t what he or she expects to hear and that there are no negative feelings. The sessions are not designed to offer counseling.

The goal is to begin to get your thoughts on paper not to end the workshop with finished pieces. It’s a beginning … a chance to start exploring your personal experience in a way that makes sense to you in a safe and supportive environment.

Register here.

The Beauty of What Remains

By Rebecca Schillenback

What is left when someone we love has gone from our sight?  What remains when a beloved person has died?  What will be left of us, after we are gone?  Can beauty be found in what remains?

In his book The Beauty of What Remains, Rabbi Steve Leder offers a gentle meditation upon these questions.  Drawing from the lessons he has gleaned from his years as the senior rabbi of one of the largest synagogues in the world, Leder’s many miles spent walking with people ‘through the valley of the shadow of death’ have led him to understand that it is actually death that can show us how to live and love more deeply.  With great compassion, Leder approaches the loss and grief that visit us because of death, and asks us to consider what gifts and opportunities might also be found there. 

Of course, it’s so understandable to wish for a life without the losses and griefs of death.  But Leder suggests that if such a wish were granted, while we could gain time and safety to a degree that is almost incomprehensible, we would also paradoxically lose something urgent and precious that defines our very humanity and propels us to love.   In the end, Leder proposes that it is precisely the urgency of love, and the preciousness of what and who we love about living, that are an indelible quality of being human, and of the beauty of what remains when death has taken someone we love from us.

All of the great spiritual traditions wrestle with the reality of our human finitude, and give voice to our many responses to the given-ness of our mortal condition.  Many stories, songs, poems, faiths, philosophies, hypotheses, and cosmologies have been crafted by our spiritual ancestors and by our contemporaries, through the millennia and modernity, to grapple with our shared condition.  Steve Leder’s book is another lovely offering in this long tradition.  Please join us as we explore this gentle book, and use Leder’s reflections as our guide for creating and connecting with ‘the beauty of what remains.’  

Book Discussion: The Beauty of What Remains, by Steve Leder

This event will include an interactive discussion of the book, The Beauty of What Remains.  Rebecca Schillenback will lead us through an exploration of spirituality, grief and what can be learned from this book. Held via Zoom. Registration is required by September 20th. For more information contact the Bereavement staff via phone at 607-272-0212 or send an email. Login details will be provided after registration.

Wintering and Cold Water Swimming: An Exploration in Radical Self Care During the Pandemic

by Laura Ward, LMFT, CT

“When it’s really cold, the snow makes a lovely noise underfoot, and it’s like the air is full of stars.”

Katherine May

The water is completely still under a brilliant sky, layers of light beneath a canopy of dark clouds. The moon shone brightly above us.  Walking into the lake, I admire the tiny shards of shell glittering on the rocks below, each shard clear and defined in the calm water. As we swim, I can feel the cold reaching all the way to my center, reminding me to just be, to breathe deep. Walking away, I carry the lake within me, calm and shimmering.

I wrote this reflection after completing my second cold water swim in Cayuga lake with my co-worker Sara Worden, Assistant Director of Community Engagement.  Cold water swimming has been shown to have numerous physical and mental health benefits and many people engage in the practice regularly. 

I became interested in this practice after reading the book Wintering: The Power of Rest and Retreat During Difficult Times by Katherine May, which is the book featured in our upcoming community book discussion. 

In the chapter “Cold Water Swimming”, Katherine talks about the mental health benefits and comradery of cold water swimming. Many people are using cold water swimming to help them cope with the many losses experienced during the pandemic. It’s a safe activity that can help swimmers feel connected to the healing powers of nature and other humans.

Book Discussion: March 4th with Laura Ward via Zoom. Register here.

Then, while talking with Sara, I discovered that she had had just booked American ice, open water and endurance swimmer, Jaimie Monahan, to speak at an upcoming event for the Women Swimmin’ community.  After marveling at the coincidence of our shared interest and the intersection of our upcoming events, we decided to give cold water swimming a try for ourselves and committed to six swims over a two-week period. 

Virtual Presentation: March 18 via Zoom. Register here.

It has been an exhilarating experience and one that has reminded me that I need to continue to stretch out of my comfort zone and look for new ways to stay healthy and care for myself as we approach the year mark of the pandemic and social distancing. To many, this might sound like a rather extreme example of self-care and I agree. 

However, we invite you to join us in reflecting on what you might need to keep going during these challenging times.  We hope that you will be inspired by Katherine May or Jaimie Monahan as you contemplate how to answer this question for yourself.

Support through the Seasons

Tools for Navigating Grief and the Holidays during COVID

At this point it’s clear, the pandemic will change many of the ways in which we celebrate the upcoming holiday season. We usually associate the holidays with being “joyful” or “merry,” gathering with family and friends, giving gifts, and engaging in festivities and traditions. This year we will need to consider how our celebrations will need to change in order to keep ourselves and our friends, family, and community safe.  

We will naturally feel some grief as we reassess what parts of the holiday we can still create and what aspects we will need to modify significantly or discard all together.  Grief can manifest in many ways, and it’s important to acknowledge its impact on our physical and emotional health as the holidays progress.

Hospicare is providing support to the community at this unusual time. Programs are free and all are welcome! To RSVP for programs or for questions call 607-272-0212 or email events@hospicare.org.  Held online via Zoom. Login details will be provided after registration. Register for programs at least 2 days before event.

Winter Solace Community Memorial: Sunday, December 6. Join us at 7pm for fellowship and conversation and stay for a memorial service. Or come at 7:30pm for the program of remembrance. All in our community who are grieving, regardless of whether your loved one died on Hospicare’s services, are welcome to stop by for a time of remembrance during the busy holiday season.

Coping with the Holidays: Wednesday, December 9, 5:30-7pm. Holiday time can be especially difficult after the death of a loved one. Learn about ways to take care of yourself and honor your feelings as we head into the holiday season. Includes a presentation followed by a discussion and support group.

Yoga for Grief: Thursday, January 7, 5-6:15pm. Start the new year with self-care! Enjoy a gentle and peaceful yoga practice with Jody Kessler. No experience necessary.

VIDEO: Illuminations 2020

Enjoy the recording of our Virtual Community Memorial. As we navigate these uncertain times, how we define and feel grief is changing. We mourn the significant loss of loved ones in our lives, as well as the 114,000+ Americans who died as a result of the pandemic. We grieve for the turmoil in our country, the loss of “normal,” and the ways in which we have had to modify our ways of life and our interactions with one another.

(Fast forward through first 5 minutes)