Tuesday
Sep252018

Fall Reading - Recomendations and Top Picks

EOL Committee Picks – Plus a Reader’s Choice Drawing

We are entering a time of year when curling up under a cozy blanket with a cup of tea and a good book or snuggling on the couch with popcorn for a good movie is just what the doctor ordered.  We hope you enjoy these recommendations from members of our partnership.

Hospice Volunteer Services in the MarbleWorks, Middlebury (directly across from the Addison Independent) has an extensive lending library of books and films.  All “Favorite Picks” mentioned below are currently available for sign out.  Please feel free to visit us and set up a free account!  (Read to the end for a chance to win a Reader’s Choice Drawing)

Dorothea Langevin:  The Hummingbird, by Stephen P. Kieran, is a Hospice Nurse’s journey with a patient through his end of life; a testament of the work that goes far beyond routine and transforms all - including the reader. A magnetic novel of interwoven life-stories, rich in insightful cultural context, and masterfully conducting two separate timelines into one powerful experience. “My copy of the book is littered notations of AHA moments - a true gift.”

Margaret OlsonCoco, a film by Pixar Animation Studios, uses the yearly Mexican celebration of The Day of The Dead to speak to cultural differences around grief and loss, death and dying.  The deeper focus is about family and legacy as expressed through storytelling and song.  “What I love most about this film is how the story depicts the many facets of grief and loss, as well as the life changing transformative opportunities that can happen when we feel supported and validated.”

Laurie Borden: Modoc, a biography written by Ralph Helfer, tells the story of a boy and an elephant and their fight to stay together across three continents. “This book demonstrated the breadth and depth of love and loss, and how they are woven together in our lives across cultures, beings and time.”

Brian's Song is a movie aired in 1971 that tells the true story of Brian Piccolo - a football player stricken with terminal cancer after turning pro - and his unlikely friendship with teammate Gale Sayers.  “This film taught me that anyone can die and it is okay to cry till you’re dry.”

Diana Barnard: The Fault in Our Stars, written by John Green (2012) and then made into a movie in 2014, is a beautiful story about two teenagers navigating life and love in the setting of cancer. The story explores the challenges of living with a life limiting illness - there is a healthy dose of humor as well as tears.”

“Tear Soup: A Recipe for Healing after Loss” (1999), is a lovely illustrated book that addresses the universal and deeply personal experience of grief. In words and pictures, it normalizes the process, explores hope, and shows us how to transform our sadness into healing. I've purchased and given this book to friends and patients of all ages and highly recommend it for your coffee table!”

Priscilla Baker:  Julia Alvarez and Sabra Field’s poem/picture book, Where Do They Go? captures the mystery of what happens after death.  Although found in the Children’s section of libraries and book stores, it is a reassuring book for all ages.

Kate Braestrup’s memoir, Here If You Need Me, is filled with stories, reflections and wisdom by a woman who became the first chaplain for the Maine Game Warden Service.  She is “here” for families, wardens, and her own children as they face challenges and all the curve balls life throws our way.   

Matt Wollam-Berens also says: Here if You Need Me gives a good description of end of life situations from a chaplain’s point of view, as well as that of first responders. While my experiences in a hospital, rehab, and nursing home situation are not as dramatic, the spiritual, emotional, and physical aspects to it are very similar. It’s the best book I’ve read about how chaplains deal with death and dying.”

Maureen ConradConfessions of a Funeral Director, is a sometimes humorous and always thoughtful description of the life of a funeral director whose family has operated a funeral home for generations.  Caleb Wilde writes honestly and openly about the good, the bad and things you never even thought to ask.”

Shirley Ryan:  One Wave at a Time; A Story About Grief and Healing by Holly Thompson is a favorite.  I first purchased this book for my 9-year-old grandson to help process his emotions after the death of his uncle; sadness, anger, fear, guilt or just flatness.  This lyrical story and extraordinary illustrations are tools for anyone at any age to cope and heal from loss. 

Permission to Mourn; A New Way to Do Grief by Tom Zuba is a comforting book.  It is a poetic read, an easy read with a profound message of embracing the death, telling the stories, learning to live on and giving oneself permission to mourn.

Now we would like to hear from you.  What is your favorite book or movie addressing death and dying?  Just send in your name, phone number and email with your choice and a quote telling us why it moves you to lborden@hospicevs.org before the deadline on October 30th.  Use a subject line of Reader’s Choice Drawing.

A winner will be drawn on October 31st – Halloween – from all entries for a prize of $100 in Middlebury Money! 

Tuesday
Aug282018

Summertime; Hospice caregiver planning and strategies to maximize enjoyment

 “Summer Time, and the Living is…Easy???”

 

Summer is a precious time full of anticipation for family events, travel and time to enjoy spontaneous fun. While serious illness can raise particular challenges to carefree living and travel, taking the time and effort to develop a plan for summer and travel can help minimize stress and maximize enjoyment for all.

Before starting on your trip talk openly to your Primary and Specialty providers about summer plans.  Basic items to have up to date and with you as you travel include:

- a list of Medical Diagnoses and Providers (along with contact information)

- medication lists

- copies of Advance Care Planning documents  

Explore how medical conditions will be affected. Ask if it is reasonably safe to travel? What illness related issues are likely to arise?  Is it possible to shift the schedule for tests, procedures, or treatments so that they do not interfere with special events? 

Even with a careful plan, unexpected things can happen.  If you will be traveling away from your medical home, prepare a list of available emergency services in your area of travel: 

-where is the local emergency room or urgent care center?

-If you will be near family, do they have regular medical providers available to offer urgently needed medical help or advice?

Consider modifying plans. If medical needs are very high, or if the stress of travel is too much for either the patient or care giver, consider moving the location of a special event closer to your home. If a patient requires frequent medical care, it may be time to consider moving up the date of a special event.  It may feel emotionally difficult to ask for these accommodations, but finding solutions to health challenges are what family, loved ones, and your medical team are there for. 

I’ve had families I work with celebrate birthdays, anniversaries and even weddings months ahead of schedule.  If energy and time allow, the original date can still be celebrated as well. Who does not like an “extra” party?  Do not feel limited by tradition or artificial time lines. I’ve been blessed to attend impromptu weddings in the Intensive Care Unit to assure a grandmother could see her first grandchild married. When my own mother in law was terminally ill and living far away, we moved up our Christmas celebration to Thanksgiving and had a wonderful family time together while she was able to enjoy our company. 

- Dr. Diana Barnard

 

“My mother is on Hospice and I’m the main caregiver for her at home. Our extended family is planning a reunion out of state and I’d love to go, but am feeling guilty about leaving. Besides, who would be available to Mom while I’m gone?” 

When caring for a loved-one with a serious illness, daily logistical questions often take center stage. It’s easy to forget the emotional strain of prolonged challenges - on all involved.  Emotions can run even higher when upcoming travel plans challenge the comfort of daily routines. It’s tempting to simply cancel or postpone events.  However, with illnesses and their unclear timelines, postponing a respite trip or family gathering can easily contribute to feelings of burn-out and resentment over missed opportunities to experience joy.

Having been a long-term caregiver myself, I know how easy it is to pass up on breaks that take us away from our loved-one who needs care. Feelings such as 'guilt of abandoning’, ‘no one provides better care than I do,’ or ‘running out of gas’ are normal.

In my own journey I realized I didn’t have to - and in certain situations could not - do it all alone. Truth is, we ALL deserve support, not only the patient. It’s the proverbial “oxygen mask” in the airplane safety instructions, that teaches us self-care in order to better assist others.

The Hospice team’s strength is to assist each person in their unique needs. I can only encourage you to speak to your team about upcoming travel needs and explore all available options and to ultimately follow your heart in your final decision.

 - Dorothea Langevin

 

“I finally have vacation time, but my Dad is 95 and lives alone and needs someone to be with him.  My siblings live cross-country and are too busy to visit.  Who do I call?”

It is so important for caregivers to be able to get respite from their responsibilities. If all possibilities of other family members or friends stepping in are exhausted, there are resources available in Addison County. There are individuals and agencies who are trained to provide respite opportunities.  The first place to go for information is your Medical Provider (primary and specialty care) - they are the gatekeepers to your care.  Our partnership is happy to help provide information if you still need assistance

– ACHHH: 388-7259 or HVS: 388-4111.

Monday
Aug132018

HVS Thru the Years

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Monday
Jun182018

ARCH End-of-Life Suites at Porter Medical Center

A brief Conversation with Dr. Diana Barnard and ARCH board member, Laurie Borden.

http://www.wcax.com/content/news/Inside-look-UVMs-Porter-Medical-Center-end-of-life-suites-485806901.html

Wednesday
Jun132018

The G.R.A.C.E. Model

Presenter:  Brian Joshin Byrnes, Sensei

Bread Loaf Mountain Zen Community 

 

The G.R.A.C.E. model of Roshi Joan Halifax has five elements:

1. Gathering attention: focus, grounding, balance 

2. Recalling intention: the resource of motivation 

3. Attuning to self/other: affective resonance

4. Considering: what will serve

5. Engaging: ethical enactment, then ending

You can use the following detailed description of each element as a script for your own G.R.A.C.E. practice:

1. Gather your attention.

Pause, breathe in, and give yourself time to get grounded. Invite yourself to be present and embodied by sensing into a place of stability in your body. You can focus your attention on the breath, for example, or on a neutral part of the body, like the soles of your feet or your hands as they rest on each other. You can also bring your attention to a phrase or an object. You can use this moment of gathering your attention to interrupt your assumptions and expectations and to allow yourself to relax and be present.

2. Recall your intention.

Remember what your life is really about, that is to act with integrity and respect the integrity in all those whom you encounter. Remember that your intention is to help others and serve others and to open your heart to the world. This "touch-in" can happen in a moment. Your motivation keeps you on track, morally grounded, and connected to your highest values.

3. Attune by first checking in with yourself, then the person you are interacting with.

First notice what's going on in your own mind and body. Then, sense into the experience of the person you are with; sense into what the other person is saying, especially emotional cues: voice tone, body language. Sense without judgment. This is an active process of inquiry, first involving yourself, then the other person. Open a space in which the encounter can unfold, in which you are present for whatever may arise, in yourself and in the other person. How you notice the other person, how you acknowledge the other person, how the other person notices you and acknowledges you... all constitute a kind of mutual exchange. The richer you make this mutual exchange, the more there is the capacity for unfolding.

4. Consider what will really serve the other person by being truly present for this one and letting insights arise. 

As the encounter with the other person unfolds, notice what the other person might be offering in this moment. What are you sensing, seeing, and learning? Ask yourself: What will really serve here? Draw on your expertise, knowledge, and experience, and at the same time, be open to seeing things in a fresh way. This is a diagnostic step, and as well, the insights you have may fall outside of a predictable category. Don't jump to conclusions too quickly.

5. Engage, enact, and then end the interaction and allow for emergence of the next step. 

From Frank Ostaseski, The Five Invitations.

Welcome Everything. Push Away Nothing. It is our task to trust the moment, to listen, and to pay careful attention to the changing experience. It is a kind of fearless receptivity, always entering new territory – a mystery we need to live into, opening, risking, and forgiving constantly.

Bring Your Whole Self to the Experience.  We draw on our strength and our helplessness, our wounds and passion to discover a meeting place with the other. Professional warmth doesn’t allow us to touch into another persons pain, rather it is the exploration of our own humanity that allows us to be of real assistance.   This allows us to touch another’s pain with compassion instead of fear or pity. We can’t travel with others in territory that we haven’t explored ourselves.

Don’t Wait. Patience is different than waiting. When we wait, we are full of expectations, and can miss what this moment has to offer. Waiting for the moment of death we miss these moments of living. Strategizing about the future, we miss the opportunities that are right in front of us. Allow the precarious nature of this life to show you what’s most important then enter fully.

Find A Place Of Rest In The Middle Of Things. We imagine that we can only rest when we change the conditions of our lives. But it is possible to discover rest right in the middle of chaos. It is experienced when we bring our full attention, without distraction, to this moment, to this activity. This place of rest is always available. We need only turn toward it. It is an aspect of us that is never sick, is not born, and will never die.

Cultivate Don’t-Know Mind. This describes a mind that is open and receptive, not limited by agendas, roles and expectations. Being in the open place of Don’t-Know Mind is not a place of ignorance; rather it is a characterized by openness. We stay very close to the experience allowing the situation itself to inform our actions. We listen carefully to our inner voice, sensing our urges, trusting our intuition. We learn to look and see with fresh eyes.

 

We live in a time when science is validating what humans have known throughout the ages: that compassion is not a luxury; it is a necessity for our well-being, resilience, and survival. My hope is that the G.R.A.C.E. model will help you to actualize compassion in your own life and that the impact of this will ripple out to benefit the people with whom you interact each day as well as countless others.