Anticipatory Grief: Digging a Grave

I was on a quiet morning walk when the words of an oncoming Bluetoothed walker reached me:

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"This may sound strange, but I started digging her grave in the backyard."

Pretty sure I was not overhearing a murder plot, I guessed that a dear pet was reaching her final days. While I have only once created a backyard grave, I am well acquainted with anticipatory grief.

The grief forum website WYG, what's your grief.com hosted a contributor, Litsa, who shared her experience with anticipatory grief. She explains why we jump-the-gun to begin grief's painful journey:

"Here is the thing about grief – though we think of it as something that happens after a death, it often begins long before death arrives.  It can start as soon as we become aware that death is a likelihood.   Once death is on the horizon, even just as a possibility, it is natural that we begin to grieve."

So, if I could, I'd console that walker with an assurance of normality. No matter how much you strive to be in the present moment with your dying loved one (pet or person,) this is a natural reaction; in fact, you may have experienced it during a loved one's short term illness or their serious surgery:  "what if they die?!"

Are you Experiencing Anticipatory Grief?

Harriet Hodgson, author of Smiling Through Your Tears: Anticipating Grief, explained some of the intense dynamics of "AG"in her post at The Caregiver Space. Imagine waking up each morning on a roller coaster:

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• Your thoughts jump around
• You face an unstoppable force
• Suspense and fear are part of your life
• You feel sorrow and hope at the same time

Anticipatory Grief is Not a Shortcut

I used to think that anticipatory grief gave you a "head start" and would make the post-death grieving shorter, easier. But this proved to be a naive notion. It depends...
Grief is such an individual experience-- individualized by your nature and needs, and the relationship you share. For some, anticipatory grief lengthens the miles on this difficult road. For others, it includes intense advocacy and exhausting caregiving so that after the death, the living "rest in peace," as well...for awhile.

How can we be supportive to a friend's anticipatory grief?  

"Blue Birds" Suzy St. John

• Express the reminder:  "This is normal!"
• Be a good listener. Take a moment to sit together--perhaps with a cup of tea.
• Avoid giving advice but if you've had a truly parallel experience, share a thought or two.
• Encourage self care; this can be a time swamped with caregiving.
• Simply ask: "How can I help?"

Bucket full of Love=Bucket List Opportunities

Litsa notes:  "Consider how you and your loved one will want to spend that time together.  Though what we want may not always be possible, do your best to spend your remaining time together in a way you and your loved one find meaningful."

In my post, Final Conversations, I encouraged conversations of gratitude, affirmation, and life celebration. Ask questions that will spur stories, laughter, hugs. Bucket List opportunities don't have to involve parachutes or plane tickets! Quality time together is priceless, but ask your loved one if there are destinations, social occasions, or adventures they long to enjoy. 

Ask your friend how you might help with wish fulfillment.  Your role could involve driving, research and reservations, or a respite visit. Respite visits are of tremendous value:  family can step away and the ill person may find relief in visiting with a neutral person. 

My final message to readers who want to support a friend during anticipatory grief:  Be patient.

Thank you for caring!

Condolence to Caregivers

Author photo

Over the past thirty years, I have been a respite visitor for hospice patients; for a time, I represented a church as a sacramental minister to the homebound. There were many similarities between those roles. I listened, discovering that others, too, often find it’s easier to confide in someone other than family. Thoughts on mortality, the fear or welcome of death, or private regrets can create unnecessary tension or be hard for loved ones to bear. So confidences were sacred moments shared. I wasn’t there to judge and, at this stage of life, they were not looking for advice.  Physically weak, frequently unable to carry on conversation, the men and women I visited listened to a poem, greetings in cards on their window sill, excerpts from scripture or an inspirational book.

And it was okay to simply sit quietly together. If they desired it, I concluded my visit with their favorite prayer, adding a personal word or two, and always, a touch. My role did not have me tending to things like bedding, hygiene or feeding, but caregivers who have such vital roles blended their skills with mine for the dignity of the whole person.

Caregivers: A Remarkable Companion for a Difficult Journey

A difficult journey, author photo

Chances are, you have needed-- or know someone employing--a caregiver. The Companion Care agency notes that "very few families can sustain a demanding caregiving effort." They cite "an innate sense of selflessness and empathy" as the top characteristic of a good caregiver. Roxanne is one of these special people, and, though tired at the end of a 14 hour shift, she stopped to tell me about her vocation. As a private duty caregiver, Roxanne accepts assignments in hospitals, skilled nursing facilities and senior residences. Unlike shift workers who have many patients and many duties, Roxanne sits in her client's room and cares for their needs. Her work is truly a "calling." I asked her about end of life vigiling with her patients. "I've sat with people in their final days, hours and minutes; I call it 'delivery,'" she shared.

Grief is not reserved for family

If you have known a professional caregiver who made a difference in a loved one's quality of life, consider writing them a thanks-filled condolence note when their job has been completed. A dedicated caregiver is not immune to a sense of loss. Consider including thoughts on any of the following:

• Observations about their dedication and skill
• Positive comments expressed by the loved one
• Ways in which they eased your day
• Favorite memory of their interaction 

I also encourage you to keep the caregiver informed of funeral or memorial service arrangements. Participating in this form of farewell and acknowledgement of the whole person whom they served, is a very comforting and healing ritual. Give the caregiver the option to attend.

Caregivers, Covid-19 Pandemic, Recoveries and Farewells

This post was written long before Covid-19 shadowed our lives, but the principles noted here still apply. Whether you dub them "heroes" is your choice, but remember:

•  thank caregivers, 
• acknowledge their own emotional journey and, 
• consider inviting them to a virtual funeral or later memorial gathering.

Follow the link above, to read about virtual funerals.

Thank you for caring! 

The Long Goodbye, Part 1: Alive Though Different: Anticipatory Grief During Alzheimer's Disease

This is the first in a series of posts about what it is like to live with Alzheimer's Disease, what comes after the death, and how to compassionately support a family during this journey.

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Those of us on the "outside" of a family facing Alzheimer's Disease, assume they are experiencing the 'evaporation' of a dear person. Yes, there are changes to a familiar personality, but in this post, we will learn a critical fact:

"There's is a person in there."

Responding to the common labelling of dementia as 'the long goodbye', Richard Taylor, Ph.D. mused:  "When you hear the diagnosis, you feel like you are dying; as people hear of your diagnosis, they start saying 'goodbye'. Instead, please say 'hello!' 

At the age of 58, Dr. Taylor was diagnosed with probable Alzheimer's type dementia. A founding member of Dementia Alliance International, Dr. Taylor served for more than a decade as "an advocate and global voice for people with dementia," until his cancer death on July 25, 2015.

I encourage readers to see any of his films or read his insight-filled memoir, Alzheimer's From the Inside Out.  After viewing Be With Me Today, I threw several assumptions (and a first draft of this post) out the window. Dr. Taylor's key points are:

•  "I am a whole person; I may be different but I am not half empty."
• Our assumption that someone is "a shell" of who they once were is erroneous. 
• "We flourish in a different culture. Cognitive decline is real but there can be growth and learning, too!"

• "While losing the ability to convey thoughts, sometimes behavior becomes the voice."
• We assume that behavior changes must be 'handled,' and that lessening inhibitions are a problem.
• Instead, these are doorways for new experiences if families and caregivers "partner" with the person--asking and offering the chance to dabble in singing or other self-expression. 

• "We need enablers, not disablers:  
• Allow us to be who we are.
• Allow us to have dignity and a sense of purpose.
• Look for ways to be supportive instead of punitive or controlling."

Is the family's journey all about 'anticipatory grief'?

All of the "we used to do's" and "she was so good at's" press on hearts because it's not just about the person with the disease:  your life has irrevocably changed, too. Changing roles brought on by changing abilities, affect running the household, expressing intimacy, and socializing.

The Alzheimer's Association provides myriad resources, including peer-to-peer support groups and online message boards, to help families learn and cope with the disease. Comments on this journey, shared on alzconnected.org message boards, include:

The Detour of an Alzheimer's Diagnosis

"I woke up feeling like I can not do it anymore. I pray all the time that God will give me the strength to keep going."

"No one really understands. You say 'cancer' and everyone bows their head with compassion. You say heart attack, stroke, or any other bloody thing and you get uninhibited support. But you say dementia and most of the time it's the big blank stare...It's a lonely disease filled with heartbreak that can stretch out over years and years, with no clear pattern and no predictability."

"We should be enjoying our retirement years, but this detour wasn't in our plans." 

A Compassionate Response

A compassionate response to the Long Goodbye begins as a listener. In various settings, I have found myself listening to a caregiver pour out weariness and frustration. Give someone five minutes of your time; let them vent. It helps.

Sometimes, just offering a little unrelated humor loosens tension like a deep breath:
a line from a sitcom, a cartoon from the newspaper, or one of those 'kids say the darndest things' viral emails or YouTube videos.


If you are able to provide some support during the caregiving phase:  a respite visit, chores, a nourishing treat--it helps.

Suggestions for a Respite Visit

As I continue to harvest insights from Dr. Taylor's memoir, I'd like to share a few of his suggestions for supporting the person with the disease, during a visit:

SING and HUM.  

• Anything from children's songs to hymns to well-known commercial jingles (especially those from the early years of the person (long term memory). 
• Sing out loud--loudly! "It's much more satisfying if done with all of your body instead of just between your ears."
• Richard says, "singing helps me feel that I am feeling okay and, in fact, good."
• "Humming makes your lips, mouth, and throat feel good."

LISTEN TO AUDIO CHILDREN'S BOOKS.

• During Richard's decline, he spent a great deal of time with his young grandchildren, and one of their favorite shared activities was reading books. As Richard's reading skills declined toward those of his five year old granddaughter, they shared some of the task.
• Listening to children's audio books is quite entertaining. With different character voices, music and sound effects, it is very entertaining. If possible, have the print book (loaded with illustrations, of course) to share, as you listen.

Keep in mind that individual preferences do exist--and change. And remember, this person you are visiting, IS A PERSON. Here are more suggestions from Dr. Taylor:

• Make eye contact.
• Use the person's name, often.
• Speak slowly but, unless you have been told he or she has hearing loss, do not raise your voice.
• Accentuate the positive and spend time exploring their recollections (of long term memories.)
• Listen.
• Pause from time to time and ask:  "How are you? Shall we do this some more?"
• Acknowledge responses and participation by saying 'thank you.' 
• Your expressions speak volumes; yes, this disease is confusing from the inside and the outside:  Smile!

The Long Goodbye, Part 2: The Empty Sigh After Alzheimer's Disease explores the stages of grief after a dementia related death. I will present some insights from therapists and researchers, and guidance for your continued compassionate contact.

Thank you for caring!

"You Didn't Waste Any Time" and other reactions

"You didn't waste any time," was my mother's emailed response. I'd sent a photo while on a run in a beautiful canyon-n-cacti recreation area...a place I'd just begun to call home after a 2,000 mile drive.

My packed SUV included the company of Ava, our Maine Coon mix,
who tested all possible perch surfaces during the drive: crate, center console, driver's lap, and lastly, a crevice beneath the cargo area requiring a complicated extraction at the end of each day.


After 5 days of that, why would I waste any time, once the apartment key was on my ring? I woke before dawn (the light of which starts at the top of the mountains and drops down their sides), assessed the desert chill and ran for the saguaro 'forest', waiting nearby.

An often-used accusation

While my mother's expression was loving, "you didn't waste any time" has been blurted out countless times when a bereaved person makes unexpected choices. My friend, "Trina", had mourned her husband during his terminal illness. While a caregiver observes the body's weakening, the dwindling and cessation of interests and activities, there may be a detachment.

In their 2011 book, The Caregiver's Tao Te Ching, William and Nancy Martin apply the 81 meditations of the Tao to the complicated and often unpredictable journey of giving care. Readers may have seen numerous topics turned into books with an overlay of Tao. The Martins identify these commonalities:

"Caregiving and the Tao...each ask that we show up and have a direct experience of life as it is unfolding in this moment...each seems unpredictable...each contains paradoxes that our desires and opinions cannot resolve..."

Interpreting meditation 66, "Remain Behind," the Martins advises caregivers: "help them but do not control them...the river of the Tao runs through them, stay out of the way and let that river do its work."  In doing so, peace and acceptance arrive like the flutter of a gentle breeze.

Baffling Outsiders

The caregiving experience is profound and life changing, and if that "gentle breeze" is adopted as lifestyle, choices and decisions may indeed baffle outsiders. 

When death finally took Trina's husband, she sent the gathered friends and family home, arranged for "Richard's" cremation, "and I went to bed for a week." She followed that unscripted week by opening the newspaper's community events calendar and "began filling my days."

Should Trina have been cleaning closets and crying in counseling? SHOULD is a problem word, and readers of this blog recently recalled the cruelty of Victorian era proscripts for appropriate mourning. 'Getting back into life' (a catchy jingle for an adult diaper brand) after a loved one's death is a Catch-22. Outsiders grow weary of coddling mourners yet they are also shocked by quick recoveries.

Re-attachment and remarriage

Three years after the fact, Sharlene's voice still carries stress as she describes her father, Edward's adjustment to widowhood: "within six months he was remarried." Edward is very typical. The San Diego Widowhood Project correlated "greater psychological well being" with a new meaningful relationship.

"By 25 months after the spouse's death 61% of men and 19% of women were either remarried or involved in a new romance."

This phenomenon relentlessly draws negative conclusions, whether about the competency of the widow or the motives of a new partner. Sharlene's family was so disturbed by the haste of the impending nuptuals, they had the woman (also a widow) investigated. There was no persuading Edward to slow down. Extravagant purchases and lifestyle changes were being made, but Sharlene's family was powerless to intervene. "We had to let it go. We had to restore our relationships with my Dad, for everyone's sake, especially the grandkids."

Powerlessness

Just as you are powerless to change the facts of someone else's grief, you are powerless to coach them to recovery (unless asked!) The Condolence Coach addresses this reality in Chapter 1, Page 1 of Words for when there are No Words: Writing a Memorable Condolence Note. 

It is so important to audit every sentence of condolence writing for "gremlin power plays."

You cannot fix, advise, persuade, condemn, cajole, or shame a grieving person onto the path you believe they should take. Even if you have experienced an identical loss, your expertise is not required. Share it in a support group, offer an opinion if asked, but remember it is only an opinion formed by your own circumstances. IT IS NOT AN ABSOLUTE TRUTH.

Trina reserved a portion of Richard's ashes and has taken them on all of her travels; he has joined the sea and soil of many countries. Readers may be interested to know that the U.S. National Park Service allows, by permit, the scattering of ashes from cremated human remains. There are usually no fees, but the "special use permit" should be obtained from the desired park.
She honored one son's wishes that there be a 'permanent place to visit his father,' by purchasing a double niche in a mausoleum of his hometown, where a custom designed urn is displayed. "It's a little strange to see my name on a plaque," Trina said with a smile because, in the words of Robert Frost, she has "miles to go before I sleep."

Life "unfolded" for Edward and Trina at a unique pace, with outcomes that met their needs. The Condolence Coach encourages readers to gently observe and support the flow of another person's river.

Read other posts about the time it takes to grieve:
The Myths About Grief and Getting Over It
and
Climbing Out of Deep Space: through and beyond grief

Thank you for caring!

No Man Is An Island: Condolence Poems, Part 3

My previous posts on condolence poetry explored poems that inspire, such as The Dash, and poems that express a personal perspective on death, such as All Is Well.

One reader urged me to share the poem, No Man Is An Island

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No man is an island,

Entire of itself,

Every man is a piece of the continent,

A part of the main.

If a clod be washed away by the sea,

Europe is the less.

As well as if a promontory were.

As well as if a manor of thy friend's

Or of thine own were:

Any man's death diminishes me,

Because I am involved in mankind,

And therefore never send to know for whom the bell tolls;

It tolls for thee. 

Its author, English poet and cleric, John Donne, wrote the enduring poem in 1624, as part of a larger work called Devotions Upon Emergent Occasions. While gravely ill, he composed 23 daily reflections on life, sickness, God, and death. No Man Is An Island was his 17th devotion (aka Meditation XVII.) 

    

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I chose the photo at left because the mosaic effect reminds me how a whole is made up of pieces. Each piece is important to the whole photo. The Condolence Coach invites readers to understand our mission of caring by pondering the line, "Any man's death diminishes me."  Sit a moment with that idea. Some of the 'losses' ushered in by death are subtle, but real. You may feel diminished at the death of someone who:

• encouraged you to set your goals high
• guided you
• trusted and confided in you 
• made you feel hopeful
• gave your life purpose as their caregiver, or even
• made you feel miserable

You may also feel diminished at the death of a person who influenced someone you love. Examples would be:  your spouse's best friend, your child's coach, your sibling's spouse.  

When these dynamics are present, enrich your condolence note with honest sharing about the impact the person had on your life. And it is okay to share your pain (the way you feel diminished). 

• "Without [name]'s encouragement, I'm not sure I would have stayed in college..."
• "Although it was my job to get [name] out of bed and ready for the day, the truth is that showing up at her house got me out of my own bed..."
•  "My son was never enthusiastic about doing chores, but after the Coach talked about responsibility, he asked me how he could help. Now, it's a struggle..."
• "Sis, I was there for you before you married [name], and though you're really hurting now, remember: I'm still here..."

Is there someone waiting for you to share this post?  Thanks for caring!

Doctors & Medical Practitioners: Charting Final Thoughts With Condolence

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At the funeral home, it is common to receive floral arrangements from businesses. Occasionally, flowers arrive from doctors and medical practices. 

While flowers are thoughtful and appreciated courtesies, can more be expressed to the family of your deceased patients?

Yes, condolences take time--a commodity usually in short supply for medical professionals. But let us assume that you do not regard your patients as "cases." If you have shepherded someone to the passageway called 'death'...

 your charting is incomplete without sympathy.

I asked Michigan internist, Eric J. Lerman, about his practice of condolence to the family of a patient who has died:  

"Sometimes I call, sometimes I write. The content varies depending on the circumstances."

The Condolence Coach frequently mentions being SENSITIVE to survivors. When family members companion a loved one during his or her final weeks, days, and hours, the experience is draining; self-doubt is common.  Dr. Lerman suggests that sensitivity is diagnostic. He applies the Key Comfort "balm" of recognizing and affirming the family:

"Often, I acknowledge the heroic efforts of caregivers and the deceased, in the end of life process/struggles."   

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Grief may be like walking in unfamiliar woods. Without a horizon or direct sky view, discerning direction is hard. The traveler longs for guidance.

"When speaking or writing to surviving spouses, I try to prepare them for the grieving process, letting them know that it will not be easy but that it will get better." 

Dr. Lerman prescribes that they "reach out to friends and family for support during the grieving process. I  suggest that their loved one would want them to try to carry on with life."
He may include gentle encouragement: "to try to shift gears from care taking for someone else to trying to take care of themselves."

At the funeral home, I often witness the dazed expression of former caregivers. 

Death has 'stomped on the brake pedal' and they feel a huge void. 

The mission of AfterGiving.com addresses that void, and provides a forum for conversation and support. In one interactive tool called Six Word Stories, the topic of starting over is described:

"You’re beginning again, too, in your life, after caregiving ends. These kind of starts can feel so awful because you feel like you yourself must start over. You must find a new way to fill your day, a new way to relate to others, a new way to spend your time."

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Caring, encouragement and sometimes, gentle guidance, are deeply meaningful elements of condolence notes. Taking the time to express them, matters.

To read other posts discussing leadership, professionals and condolence, please see these posts:
Sending Condolence to Clients and Customers
Ithaca College President Reaches Out With Condolence
POTUS Does It & So Should You: Condolence After a Suicide

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