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Silent or Speaking - Support during Pandemic and Protest

When the COVID-19 pandemic forced millions into a form of hibernation, many found themselves existing in a much quieter world, some even experiencing long periods of silence.  Some have found the opportunity to think and create in that unusually quiet space; others, (for most of us are social beings), have reached out on phones, FaceTime, and Zoom to feel a connection they have missed.  Not everyone has that luxury, and many are painfully isolated – often the disempowered, the victimized, the poor, the sick.

Recently, regardless of the extent to which communities have lifted some social distancing restrictions, hundreds of thousands of citizens have been impelled to march en masse to protest violence and discrimination against people of color. 

Whether in silence or in clamor, these sentinel events have emphasized the importance of listening to (and really hearing) others, and the importance of speaking up loudly for those who need support.

close-up of bright red gerbera daisy with dew, against black background

In this second installment of our series on Spiritual Care in Difficult Times, The Reverend Susan Trucksess, a Connecticut Hospice Pastoral Care Volunteer, examines the profound spiritual connection made when human beings sit in silence together, and the comfort and healing of solidarity, whether words are spoken or not.

ornate lantern lights up the dark

Reflections on Pastoral Care at Connecticut Hospice

"I am a Presbyterian minister..."

Presbyterians are wordy.  Presbyterian ministers highly value the Bible as the Word of God, emphasizing Word.  Presbyterian preachers preach long verbose sermons (Some might even say “endless.”)  Presbyterian pastors use lots of words in conversations and communications with parishioners.   (Some might even say “repetitive”).  I am a Presbyterian minister...thus I tend to be wordy.

"The power of silence"

For many years I served in church settings. Then, in retirement, I came to Connecticut Hospice as a volunteer in the Pastoral Care department doing in-home care.   I believed I had some experience to offer.  Instead I learned I had much to learn... such as about the power of silence.

Naturally, in the course of my vocation, I had spent a lot of time with people in various straits of life, including but not exclusively those who were facing death.   Now those at Connecticut Hospice who are moving toward the end of life in their homes are my “parishioners,” and our exchanges can have a different tone, a different quality, to them.

detail of early hebrew mosaic
picture of hands being held supportively
soft focus detail of ornate cover of Qur'an

"The quieter you become, the more you are able to hear"

Often I walk into a home or a care center, sit at the bedside, and find that silence will be the most profound medium between the patient and me.  Perhaps Mrs. Jones is presently too tired to talk.  Maybe Mr. Gonzales has lost the ability to speak.  Perhaps Rebecca is too angry or too sad to even look at me.  John may be in a coma.   What do I say in those situations?  What words do I use?  Of course, I can and do read from the Bible, the Torah, the Qur’an, if that seems appropriate or desirable.  I can offer prayer, a blessing, an anointing, and spoken expressions of comfort and hope.  And sometimes, sometimes, I can just sit in silence.   As the Persian poet Rumi said,

"The quieter you become, the more you are able to hear".

large Buddha statue in grove of trees
black and white portrait of smiling dark-skinned elder wearing kufi cap

"Each of us is living in the movement toward death"

At first, I have to admit, that seemed awkward.  No words, no response.  What was I doing there?  What was I offering?  Accomplishing?  Nothing fancy, nothing bold, nothing noteworthy.  It was humbling.  And then I realized that was exactly the point, that is the point. In these moments I am sharing in the very human condition.

Each of us there - the patient and I - are going to die.  Perhaps one sooner than the other, but each of us is living in the movement toward death. I am overwhelmed by a feeling of connectedness, of tenderness.

When two people (or more) know that we are in the process of being human, there is something that can happen between us. Something big, something grand, something tenderizing can take place in our midst.  A kind of joy.  All the things that normally distance us from one another become small and insignificant. 

We will not be here forever, but we are here together now, and Spirit is with us. There can be joy in the midst of suffering, and life in the presence of death, as the wonder of life, death, and the mystery of life beyond death unfolds for all of us.

small wooden boat on shore at sunset

Compassionate and Professional, the Connecticut Hospice way

This is part of what Connecticut Hospice is all about - and it comes in many forms of caring for patients and families - with words, and without.  It comes in a touch, a bandage, an injection, a bath, a warm meal, a smile, an assurance, a hope, a prayer.  It comes from nurses and doctors, social workers, administrators, chaplains, aides, volunteers who cut hair, bring art supplies, music, (or dogs), transport to appointments. It comes through in-person interactions and in phone calls.  It is soft and it is firm, compassionate and professional.  It is caring and tending and accompanying.  It is the Connecticut Hospice way.  And we would be honored to serve you should you need us.

Peace and blessing, The Rev. Susan Trucksess, Pastoral Care Volunteer.

Further Resources

To read more on Presbyterianism:  https://en.wikipedia.org/wiki/Presbyterianism

To find out more about 13th Century Persian poet Rumi's worksRumi - America's best-selling poet

Rumi's life, death and legacyRumi biography

Writings on stillnessStillness as action

Pablo Neruda on being quietSylvia Boorstein reads Pablo Neruda poem

How U.S. Representative and civil rights leader John Lewis learned to use words for changeExcerpts from 'Preaching to the Chickens'

#SunshineSongs Sunshine Concerts at 6PM Saturday, May 30

Free Livestream Concert Series to Connect an Intergenerational Audience of Isolated Patients During Covid-19

For all those isolated by illness and the pandemic, actress and Broadway star, five-time Tony Award nominee Laura Benanti has some joy to share, and we have been asked to help bring it to the Connecticut Hospice community and others who may not be active on social media and might be in need of connection during this time.

Benanti and social activist friend Kate Dieter-Maradei created SunshineConcerts, a free livestream concert series to connect an intergenerational audience.

Laura Benanti

Viral #SunshineSongs Social Media Campaign

This spring thousands of high school students across the country were bitterly disappointed to discover the musical productions they had spent months rehearsing would not be staged.  On Twitter, Benanti invited students to share videos of the performances they weren’t able to give because of COVID-19.

The #SunshineSongs social media campaign went viral with millions of people joining the virtual audience for students’ heartwarming performances.

Benanti received thousands of videos from all over the country, (her friend Lin-Manuel Miranda watched many with her), and the story was featured on Good Morning America, Vogue, People and the NYTimes, etc,.

Laura Benanti on Good Morning America – Sunshine Songs interview

Sunshine Concert Series

Benanti and Dieter-Maradei decided to turn this outpouring of expressions into something positive. The SunshineConcerts project livestreams performances by the best of the student submissions and includes performances by Laura Benanti, and other special guests so that elders and teenagers can come together in music. 

#Sunshinesongs Sunshine Concert Ticket

Watch the The Sunshine Concert livestream Saturday, May 30 at 6pm!  To make the event special, virtual tickets and playbills can be printed.

Download your SUNSHINEBILL Playbook here.

Download your Sunshine Concert ticket here.

Please share these details with anyone you know  who is living in isolation during the Coronavirus Pandemic.

Hands clasped on a lap

Pastoral Care is a core service of hospice care, an integral member of the interdisciplinary team that brings care to all hospice and palliative care patients and families.  During difficult times, many seek solace in their spirituality, while others have many questions, and plenty of doubt, about where to find spiritual support. 

It seems especially important to offer some reassurance while so many are struggling with current events.  On this page we will be posting a series on how pastoral care providers at Connecticut Hospice see their mission, and how patients and families feel strengthened by their support, whether they follow a particular faith system or not. 

Illuminated letters spelling Hope with light bulbs in dark

In the first of this series, Jamie Johnson, Connecticut Hospice Pastoral Care Volunteer, defines how she sees Spiritual Care, and describes how it is given to hospice and palliative care patients in our in-patient setting and to patients at home throughout Connecticut.

carved mosque window looking out on sunset

What is Spiritual Care?

Everyone has a worldview, a perspective on what is right or wrong, what is most important, what gives them comfort and inspiration, and why things happen. For many, their worldview is formed by their religion and faith communities.  Others look to their human connections, to nature, to service, to love, something larger than themselves.  This acknowledgement and embrace of something larger than ourselves, however you define it, is spirituality. 

Hospice Pastoral Care steps in

When crisis happens—unexpected change like losing a job, injury or illness, death—people turn to their sources of comfort and support, their spirituality, to make sense of what is happening.  Some people pray to God, light a candle, meditate, take a walk outside, speak to a friend, clergy, or a therapist, create art.  Sometimes, though, the crisis is so overwhelming they aren’t able to access that support.  At Connecticut Hospice, this is where the chaplains and volunteers of the Pastoral Care department step in.

All faiths and none

A sign in the Pastoral Care office reads:

Chaplains help create a sacred space for people of all faiths and cultural beliefs in stressful, life changing, or transitional moments to find meaning, hope, connection, and comfort by enabling them to identify and draw upon their inner strength.

Extended hands holding lights

This is spiritual care. Chaplains and volunteers offer their compassionate, calm, open presence to all people, from those in traditional faith communities to the “spiritual but not religious” and the “nones.”  They will listen and provide support based on the careseeker’s beliefs. 

Pastoral Careworkers do not preach or lecture; they do not judge or condemn.  They sit at bedsides, hold hands, and hold space for people to process what troubles them; they may also offer prayer, ritual, or readings as appropriate. 

Open Bible pages
Hebrew text
Open Koran pages

Inpatient Hospice Pastoral Support

If hospice patients or families need particular religious care, the department will contact local clergy.   A prayer room is always available for prayer and meditation.  Roman Catholic Mass is celebrated weekly, with communion available to those who can’t leave their rooms.  Interfaith services are also performed regularly. 

Help during difficult times

To support people of diverse beliefs, the Pastoral Care department works with the entire Connecticut Hospice team. 

Spiral of stained glass windows in a dome

The Arts Department provides engaging and inspirational art projects and music at the bedside.  Pet therapists bring dogs around for tender, loving care.  Social workers listen and guide. There are special, handmade blankets on each bed to surround patients with color and warmth.  Even our location on the shore of Long Island Sound offers a restorative breath of fresh air to patients and their loved ones.   

The Pastoral Care department is here to help and support you during difficult and challenging times. 

Jamie Johnson, Pastoral Care Volunteer,  Connecticut Hospice

Two men standing in a cornfield reaching out to shake hands

Further resources

For information about different religions and spiritualitiesHarvard Divinity School's Pluralism Project

For a series of inspiring podcasts on spiritual questions: Yale University's The Quadcast

To hear Yale University’s Shades of Yale perform uplifting spirituals: Amen & We Shall Overcome

To read A Prayer for Our Time, by The Rev. Frederick J. Streets, ’75 M.Div, Senior Pastor of Dixwell Congregational Church, New Haven, CT: A Prayer for Our Time

Resources on spiritual care and chaplaincy training:

Association of Clinical Pastoral Education

Spiritual Care Association

Association of Professional Chaplains

To learn more about Prayer Shawls and blessing blanketsPrayer shawl ministry

To donate new blankets to Connecticut Hospice, contact [email protected] or [email protected]

Hospice care adapts to a worldwide crisis

Elderly gentleman talks on phone to hospice patient wife through window

You'll Never Walk Alone

On a recent spring day, Sybil was brought down to the sunny lobby of Connecticut Hospice inpatient hospital in her bed.  Social Work and Arts Department staff had collaborated over several days to orchestrate what was to happen when she got there. Her view through the floor-to-ceiling windows took in more than just the lawns stretching down to the sparkling water of Long Island Sound.  On the other side of the glass, positioned six feet apart or more, were some of her closest family members.  As staff music therapist Hannah Righter played “You’ll Never Walk Alone”, a favorite family song learned specially for this event, Sybil’s brother-in-law held up a large, colorful sign festooned with hearts, that read “Happy Anniversary”. Other family members held up phones to share this special day with a daughter in Tennessee.  Her husband Don, sitting next to a vase of fresh tulips on a small table, leaned right up against the glass and spoke to her on a cellphone. 

“It is so difficult not to be able to be with my wife now.  Knowing I will see her through the window brings great joy”, he said before arriving. “I am very lucky to have such a wonderful family.  I could not ask for more.” 

As Hannah played “Five Foot Two, Eyes of Blue”, Sybil flashed a wide smile and sang along, tapping her hand.

This is how a couple who met days after Don’s return from service in the U.S. Army celebrate their 63rd wedding anniversary during coronavirus. When visiting guidelines are severely restricted by state executive orders, and parties must be made up of only a few, who cannot even hug each other, some have found a way to celebrate anyway.

Masked family member holds Happy Anniversary sign up against window for hospice patient at Connecticut Hospice to see.
Connecticut Hospice patient in bed facing the waterfront, with family member taking video of her through window, while more family sits apart.

Throughout the world, models of not only health care provision, but also basic human interaction, are being upended by the COVID-19 crisis.  

A ‘New Normal’ at CT Hospice

How is hospice care adapting to this new landscape? How are patients and families continuing to receive the type of care and support which are the cornerstones of hospice care?  In this article, we take a look at the ways in which Connecticut Hospice has adapted or transformed some of its programs both to meet patient and family needs, and to meet the challenges intrinsic to these times.

To enumerate the many changes and challenges, limitations and restrictions that have been placed on society in the past couple of months, and on health care providers in particular, is possibly redundant when the local and national news covers them almost exclusively on a daily basis.  However, the ‘new normal’ presents specific challenges in a hospice setting, where one-on-one support, touch, unlimited family visiting, pet therapy, volunteers, bereavement support groups, and art and music therapies have been integral to hospice care for decades.

But hospice workers have always been resilient, resourceful and collaborative. Their work with patients and families has always required that they find alternatives, offer resources and solutions, empathy and understanding.  This is especially true when one of the outcomes most wished for by the patients and families in their care – the cure of their incurable disease - is often beyond anyone’s capabilities.

Adapting with Resilience and Resourcefulness

So when infectious disease protocols and government executive orders limit close one-on-one contact with patients in the inpatient setting to certain staff, those staff-members must carry ever broader shoulders; they may be the only living beings patients can see for now and they must be almost all things to all people. The exception to this is when a patient nears the very end of life when hospice tenet dictates that no patient should die alone. Unlike the current policy in many hospitals, where COVID+ and other patients are not permitted visitors, at Connecticut Hospice, up to two family members may come at that time.

When patients cannot see facial expressions, now covered by masks and face shields, creative medical school students like Shayna Zanker step up to create large laminated badges featuring the friendly smiling face of each staff member.

CT Hospice Teamwork & Technology

Teamwork and professionalism under fire has allowed CT Hospice staff to pivot with agility, and to continue to offer excellent care and supportive programs to what is inarguably one of the most vulnerable populations.

The changes undertaken are not limited to emotional or psychological adaptations; technology is playing a huge role where physical contact is not possible.  Social Work and Arts staff collaborate to facilitate 'virtual' visits using Facetime, Skype, Messenger, Zoom, etc. as well as taking people like Sybil to the lobby for family visits from the other side of the atrium windows.

Tele-Chaplaincy is now a staple of Pastoral Carehttps://www.hospice.com/pastoral-and-spiritual-care/ Chaplains are praying with patients and families together on FaceTime.  For Christians, communion is not held with tangible sacraments, but is spiritual and virtual.  The advice that Reverend Warren Godbolt, Director of Pastoral Care, learned in theological school has taken on another layer of meaning these days –

“When you can’t find God’s hand, trust God’s heart”.

Bereavement support https://www.hospice.com/bereavement-program/ has been transformed by the COVID-19 pandemic as well. As in-person support groups were by necessity suspended, group members were contacted to inform them of on-line resources, including a Grief Group via Facebook by grief expert David Kessler. Group members are also encouraged to call the CT Hospice Bereavement Department for phone support any time. As on-line support is now being utilized much more during this time of social distancing, links to resources have also been added to the Bereavement page of the CT Hospice website and Connecticut Hospice Facebook page. Jennifer Stook, Bereavement Director, adds

“Every day we are learning new ways to connect to people needing grief or bereavement support and we are open to being creative while observing HIPAA regulations and privacy for those seeking assistance.” 

Home care https://www.hospice.com/hospice-home-care/ staff have faced an array of challenges to their routines and work habits.  PPE (personal protective equipment) is of course high on the priority list of caregivers who visit patients in homes and nursing homes, even in normal times.  The extra layers of protection now required have to be changed, sanitized, or discarded, continually throughout the day. Some families desire to have no in-person visits in their homes currently at all, so ‘tele-health’ and careful communication and observation by phone or internet is a new option.

More Technology Strides for CT Hospice

Home Care and Inpatient staff were already learning to navigate a range of new technologies connecting them with patients and each other throughout the past few years.  The pandemic has accelerated that process.  As Eric Smith, Information Systems Specialist, puts it:

“What was supposed to be a transition taking many months, became a transformation that has taken only a few weeks.  We’ve taken a broad leap from a traditional information technology environment to one where we can provide and support patient-centered care anywhere, anytime, and on any type of device.  We still have a way to go, but we are much, much further along in the process.”

Besides assisting patients and families to visit each other virtually, the Arts Program https://www.hospice.com/arts-program/ has digital exhibitions and music performances lined up to be broadcast on in-house bedside TV channels (for those without laptops or smartphones) until Arts staff and volunteers are permitted to return to making bedside visits.

The John D Thompson Hospice Institute, CT Hospice’s educational arm, https://www.hospice.com/jdt-hospice-institute/ hosts hundreds of interns and students in a normal year. Now, some of those students are finding helpful and creative ways to remain engaged.  Students from Yale’s School of Organization and Management are hosting training courses for staff, and Medical and Nursing students are donning PPE and helping in both outpatient and inpatient settings.

The Heart of Hospice

Perhaps the most moving example of the indomitable spirit of Hospice care has been the outpouring of generosity and involvement by CT Hospice Volunteers and the community at large.  Early in the crisis, a Governor’s order suspended volunteer activities in hospitals.  In Hospice care, volunteers serve in every discipline, and while they cannot now visit to help in person, this has not stopped them from remaining engaged on every level. 

Hand drawn note from girl saying "Dear Nurses - I hope these masks help you through this.  We love helping the community friends and family.  Stay Safe through all this!
Connecticut Hospice staff member receives donation of cases of yogurt for staff

They have made hundreds of masks, sent music and messages on YouTube and Facebook videos, written articles, made phone calls, recruited donations of food and PPE. In the community, armies of furloughed workers are using sewing machines and 3-D printers to produce much-needed PPE, restaurants are donating meals, and everyone is banding together to help each other through the crisis.

Connecticut Hospice staff receive donation of masks from a community member

The following has been making the rounds recently –

FEAR has two meanings – Forget Everything And Run, or, Face Everything And Rise”.

The first option is not in the lexicon of hospice workers.  Almost everything has changed in a few weeks.  Almost.  The mission and spirit of hospice care remain, stronger than ever.

Carrier bags of food donated to Connecticut Hospice, with hand drawn Thank You sign featuring red heart.

Bright yellow windowbox on deep
blue wall

For millions of people around the world a pandemic is a time of high anxiety and uncertainty, with reports indicating that stress levels of people isolated in their homes are higher than ever.

While perhaps more widespread now, this is not, however, a new phenomenon relating only to a pandemic. 

For a person living with a life-shortening illness and receiving care at home, high anxiety and uncertainty, fear and exhaustion, are often already familiar burdens – not only for them but also for their family caregivers.

How do we combat these feelings and stop anxiety from overwhelming us?

Each of us copes with tension, fear, and worry in different ways, and how your stress manifests itself physically, mentally and emotionally may dictate which strategies work best for you.  Some find it easiest to unwind when their minds are engaged by something other than the source of their anxiety.   Others feel more at peace when they’re getting things done, and some when they are doing nothing at all.

For many decades, the staff and volunteers of Connecticut Hospice https://www.hospice.com have observed how their patients and families cope best during these times, and have supported and empowered them to find their best strengths.  There are almost as many strategies as there are individuals, but some common themes emerge which can be helpful to all of us, especially now.

Range of blue hills fading in distance to horizon

Strategies for De-Stressing

If you are struggling with stress overload at home, consider some of the following strategies, which have proven effective for hospice and palliative care patients and families, individually and collectively, over many years.

Structure and routine

Feeling overwhelmed can feel like being caught in a state of chaos, with no control over what happens. Empower yourself by putting some structure and routine into your life where you are able.  Heighten your feeling of stability and control by setting the terms  - block out time for certain tasks, choose a rhythm that works for you and your circumstances, repeat patterns that work.

Meditate

A daily meditation coupled with yoga can help to center body and mind.  Increased mental clarity can help to stabilize you.  But you don’t have to practice formal meditation - simply concentrating your focus on one thing (a particular color, sound, word etc) can bring similar benefits.

Blue sky glimpsed looking upwards through bright yellow leaves

Nature

If you have access to nature (even without being able to go out into the world at large), try focusing on transformation, growth, and rebirth by putting some energy into nurturing plant-life. Caring for living plants can give you deep satisfaction, and while ‘grounding’ yourself in this way, you have an opportunity to think about your worries more constructively.  You may find peace and relaxation come more easily.

Ask for support

There is always someone somewhere who can and will help.  It is not a weakness to need support. Very often others are grateful to have an opportunity to help you - it makes them feel good too.

https://www.agingcare.com/

https://www.hospice.com/pastoral-and-spiritual-care/

https://www.hospice.com/bereavement-program/

Knowledge and information

Gather as much real information as you can, without fixating on the source of your worries.  Arming yourself with knowledge also empowers, and when you make decisions based on sound information, you are usually causing less additional stress down the road.

Man reads a book while sitting on bench overlooking the sea

Simplify

Keep things simple, do what you know you can and don’t feel guilt or anxiety if not perfect (see kindness to self!).

Play and escape

These don't only include structured games or traditional role-playing. Playful diversion can be healthy and relaxing (see kindness to self!)

Redefine

When you think of an anxiety-provoking circumstance in your life, try to think of a positive aspect of it - (optimism!).  Is there anything good that has come out of this?

Talk (and listen) to yourself

Observe how your mind and body are handling stress.

Share your feelings

Social interaction is vital to most human beings.  Being a home-bound patient or caregiver can sometimes be lonely and isolating, but if you can share your feelings and experiences with others, even one other person, someone else is then helping to share your load (in a good way!).  In-person conversations are usually most fulfilling, but if this is not possible, let technology be your friend.  With so many options for communicating nowadays - phone, FaceTime, texting, messaging, Skype, social media such as FaceBook, Instagram, etc. on-line support groups and more – the rest of the world is not always far away.  If you can, help a senior who may not have grown up using these media, to navigate them.

Man and cat look at the internet together

Kindness and tolerance (to others and self)

They often say that you cannot change circumstances or people outside yourself but you can learn to control your own responses and behaviors.   This is easier said than done, of course.  When you are exhausted, frightened, or angry this is especially hard.  It takes discipline and energy that may be in short supply.  One way to fuel up this positive energy is to perform an act of kindness (or think kindly and tolerantly of others) whenever you can. The rewards will last into your periods of lowest ebb.  Don’t forget to be kind to yourself – jettison the idea that you must be perfect, treat yourself to a few minutes of time alone, pursue a favorite activity without guilt.

Open book displays adage "Never underestimate the power of a kind word or deed."

Music

Experiencing pleasure in music lowers stress hormone levels, especially cortisol. Music can also cause activity in the nucleus accumbens and other reward areas of the brain that use the neurotransmitter dopamine, it can modulate activity in the amygdala, and it engages multiple brain regions involved in complex cognitive processing.  These are all science-based ways of saying that music feels good, is relaxing and is often good for you.

Woman sits on bed listening to albums on portable record player
Man draws in sketchbook at table with art supplies and coffee nearby

Creativity

Creativity is a life-force, and exploring your own can be exhilarating and rejuvenating, enlightening and empowering.  Explore your imagination and creativity as inspiration and materials allow.  Diverting your energy and focus from other worries in this way can be tremendously relaxing.  Conversely, using an expressive medium to deliberately delve into the source of your stress can be profoundly illuminating.  Processing and rendering something in your own way may render it no longer as threatening.  Not only might you see something in a completely different way, but you might also see a new solution to a problem.  https://www.hospice.com/arts-program/

Young man in white shirt laughing

Humor

Laughter is a well-known stress-reliever.  Whatever makes you laugh, try to do some of it.

Small child laughs joyfully while reaching up for bubbles

Sleep

Get as much as you can, as regularly as you can, forsaking extra stimuli right before settling down. Keep your room dark and quiet through the night.  Even short naps during the day can be restorative.

Pink neon lettering spells out "and breathe", against green forest floor

‘Plainness’, by Jose Luis Borges

The garden’s grillwork gate

opens with the ease of a page

in a much thumbed book,

and once inside, our eyes

have no need to dwell on objects

already fixed and exact in memory.

Here habits and minds

and the private language

all families invent

are everyday things to me.

What necessity is there to speak

or pretend to be someone else?

The whole house knows me,

they’re aware of my worries and weakness.

This is the best that can happen –

what Heaven perhaps will grant us:

not to be wondered at or required to succeed

but simply to be let in

as part of an undeniable reality,

like stones of the road, like trees.

(translated from the Spanish

by Norman Thomas di Giovanni)

Elderly woman looks outside through iron gateway
View into a cottage sunroom from outside, with rustic furniture and plants
Life review collage created by a Connecticut Hospice patient
Life review collage by a patient at Connecticut Hospice

Every human being's life story is utterly unique - in the history of the planet nobody has ever shared your exact sequence and range of life experiences or ever will again.  That makes your story, and every other human being's story, special and worth honoring.

Individual Memory

When people share stories of their lives with others, they may remember and speak of details that are particularly meaningful to them, whether they are the essential milestones or the fleeting insignificances. Others who shared the original experiences may remember and speak of them divergently. Memory often works in this individualizing way

Hospice patients explore the past and present

The work of the Arts Program of Connecticut Hospice draws forth abundant examples of this. Patients and their family members are offered a wide number of activities and therapies which, among many other things, encourage self-expression. Like narratives or aromas, it is well known that color and music are not only capable of evoking powerful emotions but are also redolent of deeply held memories. Many pages have been written on the power of music to help dementia patients, for instance, to connect with the past and relate to the present.

Hospice Arts Program

Whether interactions are during music therapy sessions, visual art activities, or any other modality, patients nearing the end of their lives almost universally engage in reminiscence or a form of life review.

At a point when most of their time on earth is behind them, patients inevitably draw on memory to communicate a sense of themselves. There is a need to take stock, to know that life has meant something, and that they have made, or are still making, their mark.

Life Review and Legacy

A more structured form of life review is practiced when patients actively discuss stages of life when prompted by specific questions and areas of focus. This is an important and widespread component of palliative and end of life care. Life Review at the end of life has the power to

Arts staff and volunteers at CT Hospice do not always deliberately guide a conversation in this way, but patients invariably share with Arts staff and volunteers their

Sometimes this is a spontaneous verbal conversation, sometimes it is recorded on video for family members to keep, and sometimes it may be represented in artwork or written word.

Amanda Salzano, ATR-LPC, staff art therapist, describes the aspect of legacy work she does with patients and family members as follows:

Art therapy offers opportunities for a patient to reflect upon his or her meaningful life experiences through art-making.  The creative process transforms personal memories into tangible, visual representations that a patient can choose to share with others.  For instance, a patient may choose to create personalized gifts to pass on his or her legacy and wisdom to family and friends, such as painting small rocks that represent life lessons and inspirational messages for others to carry with them after the patient has died.

Shared Memories

Family members may not always be aware of every detail of their loved one’s life, but are usually very eager to honor and pay homage to them, and they enthusiastically join in sharing family stories at the bedside. Each patient and family member remembers something in their own way, making a patchwork quilt of memory, while the stories shared allow them to connect to the person they love before and after they are gone

Memory Edit (I will never forget...)

New Haven-based artist Megan Craig has explored the themes of memory, connection and community, in her project “Memory Edit (I will never forget…)”, commissioned by Artspace for New Haven Citywide Open Studios in November 2019. This project explores the phenomenon of memory through touch, sound, and movement. The works consist of four fabric banners arranged with graphics and texts in hand-cut felt. Each banner represents memories from one of four artists in their 80s and 90s. During the weekend of Citywide Open Studios, sewing groups and individuals helped to hand stitch the felt onto the banners in a collective performance and sewing bee. These works will be exhibited at Connecticut Hospice in September & October of 2020.

"Memory Edit (I will never forget...) began with ideas about the precariousness of memory - how it slips over time.  I hoped to create a work that makes memory tactile and invites people to collectively secure things in place.  Sewing has a long history of being tied to memory communities and the production of objects and garments that safeguard memory.  Stitching externalizes the internal process of committing something to memory, stitch by stitch, until it holds.

For this project I began by interviewing four individuals in their 80s and 90s.  Each has led an extraordinary life of creativity.  We talked about their earliest memories of making things (poems, dances, textiles, music, paintings, stage sets, buildings) and about their artistic lives.  I annotated and edited the interviews to find dominant images and text.  Later, I rendered those pieces in hand-cut felt and worked together with Nick Lloyd to create a sound tapestry of their voices.

In the studio I laid out a 6-yard train of fabric for each of the interviewees in a color that resonates with something in their story.

Gerry's banner is green; she told me she had red hair when she was young and always "looked smart in green".  Alec's banner is blue for his earliest memory of crawling on the floor to trace the blue lines on a rug.  Susan's banner is red for her cherry-colored pointe shoes.  George's banner is the color of Louisiana Purple Pod Pole Beans.

Memory sits at the juncture of the individual and the collective.  We have different memories of the same things.  But memory is also built up over time, altered and adjusted, ripped and seamed.  Memories, like fabric, can be vivid and whole or faded and threadbare.  This work is about the possibilities for communal memory and the collaborative gesture of keeping memory intact."

For further reading:

THE BENEFITS OF REMINISCING
LIFE REVIEW THERAPY
LIFE REVIEW & QUALITY OF LIFE
CONNECTING GENERATIONS
ARTIST MEGAN CRAIG
ARTSPACE NEW HAVEN
CITY-WIDE OPEN STUDIOS

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