Showing posts with label anticipatory grief. Show all posts
Showing posts with label anticipatory grief. Show all posts

Tuesday, February 25, 2020

My Turn to Grieve

The Growing Through Grief series

I am known to many as the one who is easy with matters of dying and death. I can discuss ways to make the end of life sacred, the paperwork of death, funeral options and military honors. I do this with the conversational tone you would use to discuss the price of organic veggies, local car repair shops, or summer travel plans. For over ten years, I’ve been known as the Condolence Coach by a world of readers, but I am long overdue for a new post, and here’s why.

Last fall, when my mother entered hospice, my zeal to discuss death’s details and grief journeys, withered. In truth, it cowered in the corner, shunning all but the most necessary social contact. Sharing the life-altering news became my daily ‘small talk.’ A dog walking neighbor might comment on last night’s wind and I replied: “my mother is in hospice.” Meeting another shopper at the grocer’s card rack, I offered, “my mother is in hospice but I think she’ll make her 90th birthday.” To my relief, people were kind.

Perhaps it’s not accurate to say I lost my 'zeal,' when the real loss was ‘innocence.’ While my experience and knowledge as a hospice volunteer and funeral professional deepened insight and compassion, it was always ‘someone else’s loved one.’ Detachment preserved the innocence of my heart. Now, this was my heartache.

Sadness Selfie

Across the country, heavily sedated with the standard hospice cocktail of morphine and lorazepam, Mother wasn’t taking birthday phone calls. I quelled the panic of her slipping away by reaching out psychically. I imagined her approval and laughter as I played dress-up with the pink paisley poncho she had sewn for me fifty years ago.
Author Image

Digging through my jewelry box, I ringed its neckline with lapel pins she’d given: quirky cat, pine cone, straw dolls, and artsy swirl. Like the young bride seeking her mirrored reflection on the morning after deflowering, I sought mine and took a selfie, seeking to preserve the transforming mystery of my profound sadness. 

Until I was called to serve at my mother’s deathbed, my vigil occurred thousands of miles to the west with intense meditations, journaling, tears, and talks with my husband. I began to trust the truth of a message I’d texted when she was still able to communicate: 
“You are a fabulous woman:  
and will always be so, with or without a body.”
Photo used with permission,
Jim Hunter, Fairbanks, AK

Sacred Grieving

I began reading Grieving- the Sacred Art, Hope in the Land of Loss by Lisa Irish. Long believing death is not a medical event but a sacred one, I embraced the idea of sacred grief. Initially stunned by what Irish calls “a swirl of painful and overwhelming emotions,” I felt validated by her words, accepting that my moments of disorientation were sacramental emotions. Irish promised that if I did not identify grief as ‘the problem’ it would become ‘the solution’ and offer me hidden gifts. 

The first gift was an opportunity to vigil at my mother’s bedside. Though I was not new to this process, the intimate ministry of care for someone I adored was as riveting as it was taxing. ‘Profound’ remains one of the few useful words for this time.
Photo used with permission,
Jim Hunter, Fairbanks, AK

In the months since my mother’s death, I have received more of grief’s gifts: peace, wisdom, and gratitude. Glimpses of siblings’ grief have proven that we all walk personal paths through loss. My long held advocacy of the value of condolence notes, was affirmed. After I shared the news of my mother’s death--along with the narrative obituary I’d composed, the arrival of sympathy cards and supportive emails became an invaluable balm. I shared most of them with my family, thus multiplying their comforting impact. As the Condolence Coach, I reversed my rigid opposition to electronic condolence; for expediency and privacy, it has a place.

Sacred grieving deepened my spirituality. I celebrate my mother’s legacy of preferences and mannerisms. I believe her soul remains within reach through love. I find that memories should be curated-- as enduring or disposable. I strive to avoid regrets-- those shoulda, coulda, woulda’s-- which only sour the sweet gift of recollections.

Am I done grieving? Deadlines and calendar pages have no place in this sacred experience. I have--and will have--days of longing for my mother. 

Author photo
In 2014, I reblogged Elaine Stillwell's article, An Emergency Kit For a Bad Day . She stressed the importance of self-care, and the value of being prepared for the unexpected "black days" that can arise after a loss. My emergency kit also includes outdoor exercise, meditation moments, gratitude for a birdsong greeting, the surprise of a heart rock in the trail, and volunteering in my community. These are the stepping stones for my inner peace, one day at a time.

Thank you for caring!


Tuesday, November 28, 2017

5 Lessons Little Kids Teach Us About Loss: Guest post by Alexis Marie Chute


Once again, Grief Digest Magazine, produced by Centering Corporation has inspired me with an excellent article. 

What are your views and concerns about how children view death? 


  • Do you feel youngsters should be protected from sad events? 
  • Do you hire a babysitter when you have to attend a funeral or memorial service?
  • Do you tell the kids you "have somewhere to go" instead of explaining the occasion? 
That's how it went in my childhood; my siblings and I did not visit a grandmother's deathbed or attend her funeral; when an uncle died in a farm tractor accident, my dad travelled alone to attend his brother's services and comfort surviving family. 

These are very common responses, but Alexis Marie Chute tells a different story. When her newborn survived only one day, her whole family faced the loss. Here is her story...


Alexis Marie Chute

 5 Lessons Little Kids Teach Us About Loss

by Alexis Marie Chute

I think it’s safe to say that our society does not prepare us for the death of a loved one, either in how to experience it when it is happening or in how to grieve afterward. We are taught to shelter the living from death as if it is an unfortunate reality, better ignored than embraced. Grieving individuals, and those that support them, often struggle for a vocabulary to talk about the loss and the resulting feelings. Instead we have a vernacular ripe with cliche that leaves mourners wanting and isolated, instead of comforted and encouraged.

I experienced all of this when I lost my son, Zachary, from a cardiac tumor at birth in 2010. He was minutes old. He died in my arms. That day was a stake in the road for me; I ceased to be my old naive self and began – what is called in grief literature – my “new normal.” As I look back on myself, I recognize that much of the trauma of Zachary’s death came from my childlike desire that we all will live forever and that everything will be okay. My parents did not talk to me about loss when I was little. I wish they had.

My husband, Aaron, and I have been honest with our living children about Zachary, what happened to him, how it affected us, and how we still miss him today. That discussion has opened the door for my children to think about death. Some of their responses have taught me valuable lessons.

1. Talk about the dead.

This sounds like something out of the Sixth Sense movie or the perfect set-up for being labeled the weirdo at the party. It shouldn’t be. Children are not predisposed (unless we teach them) to the negative societal taboos around loss. My seven and four-year-old kids bring up Zachary all the time. If someone dies, they mention Zach. If I am asked how many kids I have and I say, “Three,” I am immediately corrected. “No, Mom. You have four kids!” they say proudly. Sometimes I worry how others will respond to this behavior from my children, but then I give my head a shake. Talking about those we love, even if they have passed, should be the most normal thing in the world.

2. Accept death as a natural and beautiful part of life.

We have a cultural obsession with youth and beauty. This is one area, among many, where the cult of celebrity sets us up for heartache. We do not have public and prolific guidance to help us accept death as inseparable from life. I believe life and death are yin-yang, two equal parts of one complete whole. In contrast, our society has erected opposing notions of life and death as one being good and the other bad.

Children, however, when spoken to about death as a part of life, do not fear it as a scary monster to avoid, but integrate it into the fabric of their understanding. There are many natural parallels that children more innately connect with on this topic. The seasons are one example. Leaves fall from the trees each autumn and we have winter. Then new life grows again in the spring. A seed that is buried in the ground, just when we’ve nearly forgotten about it, sprouts and blossoms into a flower. In a short span of time a great grandparent passes and a new sibling birthed. This is all natural, cyclical, and connected.

3. Think about death and strive for personal understanding.

My older children used to go to a day-home while I worked. One day the woman who ran the home took a step closer to me than normal and in a hushed voice said, “I just wanted you to know, your kids were playing make-believe today and they said the baby-doll died. I made sure to tell them that they shouldn’t play like that.” Instead of being concerned, I was proud that my kids were working out their own personal understanding of our experience and what death means to them! They were doing that in the only way they knew how - through play. When I talked to them about it, I affirmed their actions and encouraged them to make-believe however they wanted. They were not distracting themselves or repressing their feelings on loss, like so many adults do, only to rack up steep therapy bills just to re-open their hearts in this expressive way.

4. Loss is a family matter, not only a solo experience.

The bonds between family are not severed because of loss. That is what my children have taught me. When my kids talk about Zachary, he “is” their brother, not past tense. We talk about how Zach lives on in our hearts. If we are discussing loneliness, my kids pipe up and say, “You are never alone because Zachary is right here,” as they point to their chests. I know they do process the loss in an individual way, we all do, but in mourning and celebrating Zach’s life, it is a family matter.

My daughter, Hannah, my seven-year-old, will draw a portrait of our family and, without prompting, include Zach in the picture. That is her solo action, but she immediately shows Aaron and me the drawing, and then hangs it from the fridge with magnets. As a family, on the anniversary of Zach’s birth, and death, we take the day off from work and school and bake a cake, go swimming, plant a tree, and just generally cuddle-up and spend quality time together. I believe because of this, the kids do not feel they carry their grief, or the weight of death, all on their own. It is a shared experience and therefore shared support and love.

5. Speaking of love… It never dies.

My kids often say, “I love my whole family! I love Mommy and Daddy, and Hannah, and Eden, and Luca, AND Zachary!” They talk about loving their unseen brother. They talk about missing him and wishing he was alive and with us. In these moments, I take a deep breath, pause from busyness, and feel my own love for Zachary and the throb of ache in missing him and the life I had hoped we would share together. Yes, my child died and that is my personal tragedy, but the love I have for him can never be taken from me. Though society uses phrases like “move on,” I choose to take the lead from my kids. Zachary is a part of us and we love him – present tense, and that is okay.
Expecting Sunshine, A Memoir by Alexis Marie Chute
💔💕💗  

In her memoir Expecting Sunshine, A Journey of Grief, Healing, and Pregnancy After LossAlexis shared her journey--from pregnancy and the discovery of Zachary's in-utero condition, to the family's decision to always love him as son and brother: present tense!
Click here to learn more about the book




 ABOUT THE AUTHOR:
Alexis Marie Chute is the author of the award-winning memoir Expecting Sunshine: A Journey of Grief, Healing and Pregnancy After Loss, available on Amazon and wherever books are sold. Alexis Marie is a writer, artist, filmmaker, public speaker, and bereavement expert. Learn more about her book and documentary, Expecting Sunshine: The Truth About Pregnancy After Loss, at www.ExpectingSunshine.com. She is a healthy-grief advocate educating others on how to heal in creative and authentic ways. You can also connect with Alexis Marie Chute on Facebook, LinkedIn Twitter, Instagram, Pinterest, Tumblr, and YouTube.

RESOURCES:
 Visit Alexis' bereavement blog:  www.WantedChosenPlanned.com

Condolence Coach Photo
The Condolence Coach did a 5-part series on how to understand and respond to a family facing miscarriage, stillbirth, and infant death:
  1. Angels Above Baby Gowns: Soothing a Terrible Loss
  2. Angels Above Baby Gowns: Someday I'll Meet My Brothers
  3. Angels Above Baby Gowns: Delivery at a Birthing Center
  4. Angels Above Baby Gowns: A Time to Tear and a Time to Mend
  5. Angels Above Baby Gowns: Heartbeats and Lightening Bolts
And remember that the grieving family includes grandparents:


"Punk Bird" by Suzy St.John
A widely celebrated project for kids is the creation of a memory box. Here's how to introduce the idea:  Grieving Children and the Memory Box Condolence Gift

In this season of giving thanks, I say to all readers:

Thank you for caring!

Tuesday, January 10, 2017

Anticipatory Grief: Digging a Grave

I was on a quiet morning walk when the words of an oncoming Bluetoothed walker reached me:
[Source]
"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:
[Source]
  • 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!

Wednesday, September 23, 2015

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.

Author Image

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!