TB or not TB: Volunteering for a hospice

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Courage? Not Necessarily. Encourage? Yes!

 I have been volunteering with hospices for thirty+ years. Last year, I prepared a resume of my experience and was gratified by not only the enduring commitment to this work, but how far I've come in understanding its nuances. It is such rewarding work because it courageously embraces the most powerful reality of life:  our human form will reach an end point or as some term it-- a passage of transition to being without a body. Just being present to someone in the terminal phase of life and then, their active dying phase, feels sacred.

 

Passive and Active Encouragement

Honestly, I don't think 'courage' is required to be a hospice volunteer; instead, your gift is serving as a presence (listening, holding a hand, vigiling,)  and while these are forms of passive encouragement, you may recognize a need for active encouragement. Both forms of encouragement can occur whether the patient is conscious or unconscious.  When appropriate (determined by your skills of observation and intuition,) I believe a hospice volunteer is truly effective to:

Actively Encourage the person who is dying that...

• their life has been unfolding exactly as it needed to.
• they did the best they could with what they had.
• their legacy is principally about love and kindness; money and stuff are secondary.
• they can make peace with unresolved issues by simply doing so in their heart.
• it is now time to let go of this world, but they are not alone as they do so.
• the 'other side' awaits them.

Your Role with Family

A hospice volunteer often has contact with family--be it a spouse, partner, or adult child. Here again, your gift is serving as a presence: providing a respite, listening non judgmentally, quietly companioning during a vigil. Sometimes you will recognize the family member's need for active encouragement and then, keep it caring but simple. You may coach them on what is happening in the dying process with their loved one, but you are not there to counsel or give life advise. Let your heart, spirit and experience lead the way. 

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Here are ways I believe a hospice volunteer is truly effective in active encouraging:

Encourage the survivors that...

Even when we don't understand its timing, the circle of life ends.

Even if it sometimes appeared terribly difficult, their loved one lived the best they could with what they had.

During the dying process they can find peace with spoken words or a hand held; later, choosing heartfelt peace unfolds with forgiveness, acceptance, letting go.

The 'other side' awaits their loved one.

If you hear of specific concerns for a survivor's future--be it funeral arrangements, family or life matters, please pass that observation on to the hospice chaplain, social worker or bereavement support coordinator. Just say: "I think one of our hospice staff can help with that; I'll let them know."

Encouragement when you work in bereavement support

• death under tragic circumstances changes all survivors: give yourself time to grow into and past the crippling pain by reaching out for strength. It's available through support groups, counseling, clergy and spiritual care, online forums and activist groups.
• the legacy of a loved one has already been given; in time, you will find it in your heart.
• grieving is a personal journey--a nonlinear and fluctuating process of your own making and timing.
• allow yourself space, time, privacy to feel the power of this shared love, grieve its physical conclusion, and trust that in time, life will find a new equilibrium.

Before you begin service as a hospice volunteer

Be assured that you are needed! Volunteers fill essential roles and bring a unique dedication, often with a personal history and sensitivity to needs. It is suggested that you be at least one year beyond a significant personal loss before placing yourself in this type of volunteer role; the volunteer coordinator will probably ask about this. Volunteering in almost any human services setting may require annual testing for tuberculosis (TB) with a simple skin test. The Mayo Clinic notes:

 "Tuberculosis (TB) is a potentially serious infectious disease that mainly affects the lungs. The bacteria that cause tuberculosis are spread from person to person through tiny droplets released into the air via coughs and sneezes."  

So it is a mutual safeguard, along the lines of other Universal Precautions (such as thorough and frequent hand washing, use of mask and gloves at times,) necessary in patient care settings. 

Expect paperwork! 

A reputable organization will require an application, background check, and/or

 references. With the reality of Covid 19, your vaccination status and documentation will be requested. Annual flu shots may be recommended but may not be mandatory for the organization. You'll be asked for a recent photo so that a photo identification badge can be made. 

Expect your own questioning, a sense of wonder, surprise, and even fear. Accept that dying and death are cloaked in profound mystery, almost beyond comprehension; but hold faith in its universality and the fact that humans crave love and companionship-- even when we vehemently express the opposite! To find a volunteer role with hospice, simply search "hospices near me", click on sites' volunteer tab, and consider calling the volunteer coordinator to learn more about the work. 

Thank you for sharing and caring!

When You Are A Witness

 I have witnessed many people leave their bodies at death. Technically, I do not see souls--or any special effects of spirit--other than the body releasing its grip on this thing we call life. But I believe in its exit. Consistent with Unity teaching, Unity minister, Ellen Debenport, described our four essential layers of existence as being like 'Russian nesting dolls,':  (the smallest) the body+the ego+the soul+Spirit (our God essence.) The physical body and the mental ego are left behind at death, as our individualized, eternal conciousness continues its journey. 

Respectfully, I realize this set of beliefs is not universally accepted, but I hope you will continue reading. Readers may wish to further explore this topic of 'nonlocal consciousness' (the continuity of consciousness after physical death) in The Immortal Mind: Science and the Continuity of Consciousness beyond the Brain by Ervin Laszlo, with Anthony Peake.

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Perhaps you have read accounts of NDE (Near Death Experience) and can envision with me, the shift that occurs in consciousness when it is free of the body. Raymond Moody brought this to wider awareness in his 1975 book, Life After Life. It is through NDE accounts that we can even glean what occurs at death and yet, someday, each of us will have this ultimate mortal experience. 

Midday on March 19, 2022, my husband and I were driving to an event in Tucson and came upon an accident scene. Despite my professional experience, it shook me up. Now, one month later, I have found some peace and understanding. The circumstances remain very sad and more should be done to ensure cycling is a safe recreational experience. 

Witness

I am lying on the side of the road at least 

my body is. 

Is that my wife too

A few yards west

Lying on the side of the road?

There is my beautiful

full carbon Vitesse EVO

with its sexy stiffness

Its four grand float fantasy frame

Oddly crumpled near the sheriff’s suv.

I am lying on the side of the road at least

My body is.

And yes my beautiful young wife

Lies beneath a tarp 

As do I and yet

 she now takes my hand saying:

Cookie

Looks like our ride is over.

My beautiful wife

My beautiful cycle

oh my oh my oh my

Everything, simply everything

Is beautiful.

And what do you know

I feel no concern that

the dog is waiting for her midday treat or

I’ll be a no-show at choir rehearsal or

The gas bill still needs a stamp or

I wore yesterday’s underwear again today.

‘Aha!’ hardly begins to explain

What I feel see hear know

This joy-peace without emotion

This radiance without glare

This vibrance without clamor

This knowing without quest or question

All this all this all this.

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In memory of Kenneth and Gretchen Cook

Cyclists killed March 19, 2022, Tucson AZ 

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Thank you for caring and sharing...and please:

Share the road!

 

Journey of the Mind: Co-Meditation with the Dying

 Sacred Journey

Off and on for over twenty years, I’ve been a hospice volunteer and my favorite duty has been sitting with the actively dying. Tough, right? Actually, I view dying as a sacred journey--the counterpoint to the wonder of birth and thus, it’s a privilege to share that space with someone. One afternoon, I was called to visit “Cheryl,” who was quickly declining. Medications had been administered but I found her restless and distressed after a fall and painful arm injury. “I just want to go into the woods and die,” she cried. “Well, you can, Cheryl. Let’s go together,” was my reply.

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Gently stroking her hand, I described our walk from the sidewalk of a noisy Tucson street into the breeze whispering stillness of the woods.
Underfoot, the dense loam of brown leaves and pine needles hushed and softened our footsteps. Pale light filtered through the forest canopy; a squirrel darted by and unseen birds chittered now and then. “The woods smell so sweet; why don’t we sit on this big log for awhile, Cheryl.” In the afternoon stillness, our breathing slowed and words were unnecessary. We had arrived at the doorway to peace, and Cheryl left her body a few hours later.

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Freedom of Spirit

Jack Kornfield, author and a key teacher of mindfulness, calls this experience “freedom of spirit.” No matter what circumstances weigh on your physical life, your spirit--the ‘you’ behind the flesh--is always free. Kornfield reminds us, “your mind is not limited to your head,” so you need only be still and aware to enter unrestricted spaciousness. Older adults often find it easier to settle in a comfy chair, close the eyes, enjoy some full breaths and then float in awareness. The seas and breezes of your being may drift through memory and gratitude, to a place of deep peace. Some people call it a ‘practice’ and use bells and rituals to get here. Increasingly, health professionals are putting down the prescription pads and pointing to quiet places. 

Comeditation

If you find yourself with a loved one who is dying, or struggling with an illness, follow my example of introducing comeditation. It has been proven to calm physical and mental distress. It can be focused on natural, rhythmic breathing without words, but an explanation to the person you are caring for, helps them orient to the calm. It is also important to note that the dying person does not need to be conscious to benefit!

You can make a difference:  pull up a chair, take their hand, and ask: 

If you could be some place else right now, where would you go?

What a wonderful gift to offer! If their go-to place is something you can describe, do so; if they feel able to describe the journey, encourage them to be as vivid and sensory in their description, as possible. But for the fullest calming benefit, don't turn it into a dialogue. Finally, once you both have "arrived" at the place, sit quietly with eyes closed. Let the journey last for its comfortable duration. 

Read more about impermanence and mindfulness:

Impermanence: changing how you cope with change

Read more about mindfulness:

Finding pleasure and peace in slow

Thank you for caring...and sharing!

The Covid-19 Condolence Note

Begin at the beginning

Every death and every grief is a tough ration of reality. Normalcy is suspended. Extra duties pile on and most have unique challenges; still, survivors move forward. They find comfort and support in the strata of life relationships and, with time and revision, 'normal' bears resemblance to the well known.

If there is one topic all of humanity agrees on, it is that the Covid-19 pandemic has assaulted the concept of 'normal.' All patterns-- how we tend the sick, vigil the dying, gather to mourn and weave our memories into shared legacy--are torn. We are left to begin at the beginning. 

Celebrating a person's life should never be about the cause of their death.

You may feel the pandemic has taken much from you--casual freedoms, livelihood, leisure enjoyments; DO NOT let it take your memories of this wonderful person!

Beyond the Top 5 Keys for a Great Condolence Note

Now, more than ever, you need to step up with written condolence. Final embraces, funeral hugs and food-filled wakes have been put on hold (many irretrievable!) Since you may not be able to reach out with arms, reach out with words! Giving survivors something to hold and spend time with not only fills in gaps, but provides a lifeline of hope.

Years ago, I designed a bookmark to promote my eBook, but I wanted it to be useful beyond marking your place. I reviewed my writings and distilled the reams of Condolence Coaching to this:

Notice the suggestion that you only need 2 or 3 Keys for your note. Easy, right? It's a good start. And while we absolutely want to deliver good memories, acknowledging the difficult circumstances which likely surrounded loved ones' proximity to the care and death, can be done gently.

Phrasing Special Sympathies for the Hardships of Today

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In addition to selecting one of the Top 5 Keys for your condolence, give your note a sensitivity boost if one of these circumstances occurred:

• If survivor(s) were not able to to be at the dying person's bedside:
• "Trust that the love you have long-shared, surrounded ____ when you could not be at his/her bedside."
• If funeral arrangements were hasty, severely abbreviated, or a gathering was delayed to a future "safer" date:
• "Although we couldn't gather as hoped, my heart and thoughts were with you."
• "Although we couldn't gather right away, I look forward to being with you someday soon."
• Acknowledging the lack of hugs, etc. when they are most acutely needed:
• "When I heard the news, I just wanted to give you a big hug. Please know that within these words is a "raincheck" for that hug!"

Remember that, if you do not have a mailing address for the family, you can always send your card or note c/o the funeral home or mortuary that handled the final disposition. Just write "Please forward" on the envelope.

Read about Virtual Funerals, here!

Thank you for caring!

Final Conversations: Helping the dying transition from this world

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Although entering hospice is a time focused on urgent and immediate needs like symptom management, once the stresses associated with admission abate, more person-centric conversations can take place. They are always meaningful.

The Condolence Coach encourages you to be open to opportunities for these final conversations:

• Speak with the dying person.
• If you have a friend with a dying family member, you can plant the same seeds of reflection, by "wondering out loud":
• "Do you think your mother has any last wishes?"
• "I'd like to tell her how much I appreciated being invited to stay for supper when we'd play after school."
• "Would you like us to sing the old Christmas carol duet to her?"

Talking about life accomplishments is an important source of validation and peace.

Arbor Hospice social worker Rebecca Faszcza, MSW, explained:

“I try to encourage discussion about the patient’s life satisfactions and achievements. Establishing a rapport can begin as simply as asking, ‘Tell me about yourself, have you always lived in this area? What did you do for a living? (and if age appropriate) What have you enjoyed in your retirement?’

It is so rewarding when I can facilitate contented reflections for the patient, and deepen the admiration and understanding of their family. Recently, a patient opened up with fond boyhood memories of his parents. He gratefully remarked, ‘It’s so good to remember those times.’ His family delighted in stories of their heritage, saying, ‘Wow- you never told us that!’”

No matter how old we are, acknowledgement feeds our spirit. 

Say it while you can.

• “You started out with a saw and a hammer, and now the construction company has 80 employees!”
• “We’re so proud that you were a ‘Rosie Riveter’ during the war years.”
• “You raised us by yourself and never complained.”

Talking about things left undone may reveal something important.

Some things--like projects or paperwork, can be satisfied by a work session with note taking, sketching a diagram, bringing documents to a bedside and listening attentively!

• “I never got around to finishing that wiring in the attic.”

• “I hid some savings bonds in the bottom of my sewing basket.”
• “I never told you this, but …”

Talking about hopes for special experiences can be part of the end of life journey, too.

Have you asked any of your loved ones if they have a bucket list? A bucket list states actions and experiences sought before death. It may be committed to memory or paper, composed thoughtfully or on a whim. Social worker, Rebecca, likes to help patients honestly face life’s loose threads...and sometimes, there’s a way to weave them to completion.

“If they express a dream to do something that is now out of reach, I might say ‘there’s no fix for that,’ but encourage them to talk more about it, learn about it with movies, pictures, the internet. What’s most beneficial is getting it off your chest by talking about it. Patients really relax and even enjoy the ‘armchair traveler’ experience.”

• “I thought about riding a motorcycle cross country.”

• “I always wanted to touch an elephant.”
• “I wanted to take a hot air balloon ride.”

These conversations should be light, prompt laughter and imaginative musing. Pull out your computer and show your loved one some YouTube videos of those bucket list adventures.

Adults have dreams, too. 

While children in hospice are often treated to wonderful experiences through Make-A-Wish interventions, Rebecca understands that adults may have a longing for a final visit with someone.

“Many times, a terminally ill patient just wants to see out-of-state family. If physical circumstances allow it, we encourage them-with family help--to make the trip. I will coordinate with a hospice at their destination, to ensure they have support in case of an emergency. And when he or she returns will photos and lots of good memories, they are in a peaceful place.”

If a longing to see distant relatives cannot be physically managed, consider setting up video chat sessions with Skype (for Windows or Android) or FaceTime (for Mac or iPhone).

Tweak the timeline of a special occasion.

Arbor Hospice Lead Spiritual Care Coordinator, Chaplain Diane Smith, has frequently officiated at bedside wedding ceremonies. Though unofficial, the ritual enables a beloved family member to witness a milestone moment. “I support their hopes and ideas. Family cooperation is great: one bride bought a special dress, a violin was played, and mom brought and served cake.”

Is there a final conversation you can have with someone, today?


Remember that sending a note to a terminally ill person is also an option. The Condolence Coach addresses what to say in this post.

Thank you for caring!

Laughing Condolence: When Life Overflows, Share A Story

I've told readers before about my delight in accidently pouring a beverage to overflowing. Watching the liquid cascade over the brim is very therapeutic.

I am reminded that, at times, life overflows. 

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I suppose I'd save a few paper towels by observing a fountain--especially one with a satisfying spill. At the funeral home, my heart is warmed to see a circle of chairs drawn together, and stories being shared. Laughter spills from the room and it is good. It might be the younger generation swapping stories about Grandpa's girlie poster in the garage. It might be the adult children remembering Dad's standard reaction every time they had to tell him something was broken.

This is a gathering of “The Walking Wounded”

When you are one of the walking wounded, coping with the death of a person you've loved and enjoyed, hurts. Telling (and listening to) stories is a balm. 

Many years ago, I had a wonderful friendship with a gentleman I met at church. We got in the habit of having breakfast after the service; I'd show him how to peel a grapefruit, and he'd promise perfect toast from homemade bread. Leo smoothly maneuvered his scooter over to the counter, ready for the slices to pop up. A fifty year age difference made no difference. 

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The most remarkable thing about our friendship was its focus on the moment. We didn't exchange much personal history, preferring the vitality of the present:  days of fun--or funny incidents--were dubbed 'Holy Days.' We'd muse on a line from a hymn, or scripture, or a joke: 'Said the ink spot to the paper:  my dad is in the pen awaiting sentence.' From time to time we’d exchange letters by mail. It was an uncomplicated but precious camaradie.  

When Leo suddenly lapsed into a coma, his family graciously invited me to sit with him during what became his final hours. When he died, my first anguished thought was, “Who will love me like Leo?” At the vigil gathering, I was reminded that his death had left a gap for many.  That evening, laughter softened the hurt, as stories and memories were shared. 

A few days later, I wrote a condolence note to one of his adult sons, knowing it would be my expression to the entire family. The notecard I selected depicted a young child sitting amidst the lion and the lamb, an image of the peaceable kingdom described in the Bible’s Book of Isaiah. To me, Leo was the “peaceable kingdom,” and he made me feel like one of its princesses. Because my life had overflowed with something wonderful, I shared a funny breakfast story. It was a Laughing Condolence.

The Condolence Coach recognizes that, for some cultures, the room should be quiet.

I have served vigil gatherings where a large circle of chairs is utilized, but the silence is broken only by murmurs and possibly, low tones of 'angelic' music playing on the sound system. A quiet vigil provides a different type of support and contemplation of the deceased's life. This does not preclude a later condolence note containing a funny story. If you had a special relationship, your good judgement will guide you.

Thank you for caring and sharing!

Creative Condolence: Poems, Part 2

If you start looking for them, you will find that there are many poems about:

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• nearing the end of life
• the end of life
• what may be after life
• the "Afterlife"

At the funeral home, I prepare a number of keepsake items including memorial folders, and they all feature prayers, psalms, or poems. Reading them, reminds me that beliefs about death are very personal, guided by:

• life experience
• books
• movies
• gurus
• prophets
• faith-based doctrine

Will a poem that comforts and inspires you, be the right one for someone else? Let's look at an example which was submitted by one of my readers:

All Is Well - Henry Scott Holland

Death is nothing at all,

I have only slipped away into the next room,

I am I, and you are you,

Whatever we were to each other, that we are still,

Call me by my old familiar name,

Speak to me in the same easy way which you always did,

Put no difference into your tone;

Wear no forced air of solemnity or sorrow.

Laugh as we always laughed at the little jokes we enjoyed together.

Play, smile, think of me, pray for me.

Let my name be the household word that it always was.

Let it be spoken without effect, without the shadow of a ghost on it.

Life means all that it ever meant.

It is the same as it ever was; there is absolutely unbroken continuity,

Why should I be out of mind because I am out of sight?

I am just waiting for you, for an interval, somewhere very near, just around the corner.

All is well.

Henry Scott Holland was a religious professor at England's Oxford University, when he delivered a sermon in St. Paul's Cathedral following the death of King Edward VII, in 1910. What we know as the poem, All Is Well, was derived from that sermon.

The reader who submitted this poem shared that she is leaving final instructions that the poem be used on her memorial folder.

I applaud her advanced planning because this poem expresses her farewell.

I am not certain, however, that the "voice of the dead" method is well timed for a condolence note. Yes, it encourages us to not forget, to use the loved one's name, and to make our way back to a life of laughter and play. But...

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The Coach says:  do not give advice; do not cajole the grieving to 'move on;' do not share your belief system's answer on what happens after death.

If you have written a poem or essay which expresses your regard and sense of loss at the death (and does not preach,) you may have a gem to offer in your condolence note.  

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Thank you for caring!