Archive for grief – Page 2

Changing the Narrative Around “Bad Deaths”: Part 2–The Challenge of a Growing Field

Posted by Carla Cheatham on

March 8, 2017

As hospice and palliative care matures as a field, we will naturally face growing pains, which can be traumatic for the patients and families who fall through our cracks. In this 3-part series on Changing the Narrative Around “Bad Deaths”, I’ll look at some of the issues, how we can respond, and how professionals and lay persons can all work to make a difference.

Part 2–The Challenge of a Growing Field

As hospice and palliative care grows as a professional field, we face the same growing pains and challenges of any other industry in its relatively early years:

Our systems scramble to keep up with our growing companies

Our regulations become insanely time-consuming to keep up with

As big fish swallow up little fish and the industry becomes increasingly corporate we get the advantage of huge well-oiled machines with resources and systems along with the challenge of figuring out how to keep creativity, personalized and hands-on care, and the mom-and-pop family feel that keeps the hospice heart in our agencies.

It’s a natural part of the developmental process faced by any field. But since we only have one chance to get a person’s death right, and there are no do-overs, every moment of our imperfection has effects that linger long after the last clinical note has been written and funeral reception casserole dish has been washed and returned.

So, what do we do?

In my early career in child and family therapy and in my trauma counseling work, we’re trained to help persons manage their nightmares. When they wake from one, we teach them to decide as quickly as possible how they wish the story had ended, instead. For instance, instead of catching them, the monster chasing them turns into a cute puppy and they sit down and play with it.

They visualize what they wanted to happen and claim that new story rather than perseverate on the nightmare and wear that grove even more deeply into their brains.

Re-storying as a way of creating new meaning is a powerful tool in therapy and also in working with grief. Meaning-making can be one way we way of transforming the proverbial lemons into something life-giving, not to deny what happened or try to pretty it up, but to not allow the tragic be the end of the story.

A woman whose son drowned in a lake now devotes her life to raising awareness about the high rates of deaths in dark waters and the need for life jackets.

Adult children of parents who die of dementia become some of our most fierce and effective advocates for research and higher-quality care.

My own devotion to organ donation only increased when my sister-in-law’s heart saved another young mother of small children, around my niece and nephew’s age.

We can make a tremendous difference if we push for greater education about end of life care in medical and nursing schools, social work programs, seminaries, and nurse aid training. We can demand that legislation support rather than inhibit quality medical care and palliative support.

I’ve written before that Boomers, as the most highly educated, empowered, and well-resourced consumer cohort ever to enter end of life care for their parents or themselves, by their sheer numbers, will force us to get it right. There are numerous ways all of us can help that happen.

Dr. Ira Byock wrote a great opinion piece a couple of years ago in The New York Times that speaks to this very issue. It’s a great read about getting pissed and refusing to take it anymore by doing something about it!

We can accuse and blame, we can get defensive and make excuses, or we can use our energy of frustration and anger to make things better.

In next week’s post, I’ll share a list of ways you can take action and resources you can engage with to help make a difference in your life and in the industry as a whole. Together, we CAN make things different.

For what it’s worth.

Peace,

Carla

Learn more about Carla’s writings at HospiceWhispers.com and trainings for lay persons and professionals at CarlaCheatham.com

Rev. Carla Cheatham, MA, MDiv, PhD, TRT has served hospices as a chaplain and bereavement coordinator. She’s the Section Leader for the Spiritual Caregivers Section of the National Hospice and Palliative Care Organization and an adjunct professor at the Seminary of the Southwest. Through her Carla Cheatham Consulting Group, Carla provides training and consulting for professional caregivers nationwide. She is the author of Hospice Whispers: Stories of Life and its companion volume, Sharing Our Stories: A Hospice Whispers Grief Support Workbook. Her next book, On Showing Up with Suffering: Others’ and Our Own, is set to publish in 2017.

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Changing the Narrative Around “Bad Deaths”: Part 1–The Dynamics We Face

Posted by Carla Cheatham on

March 1, 2017

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Part I–The Dynamics We Face

As a hospice chaplain, bereavement counselor, and collector and teller of stories, I hear a lot of awful ones about bad deaths, made much more traumatic by the fact that they need not have been, for anyone involved.

My colleagues and I absolutely cringe when we hear these stories because that’s exactly what we so very passionately dedicate our lives to prevent. It drives us nuts when it happens.

Hospice and palliative care is devoted to managing symptoms and providing comfort for not only the patient’s body but also the heart, mind, and soul of everyone involved, including family and other loved ones.

When we hear the horror stories, we often want to push back against them to defend the field and our heart’s work,

“Oh, you just had a bad palliative team, most of them are great…”

“If only she had received hospice care…”

Without meaning to, we deflect their very real experience and lingering pain caused by a complicated death when we do that.

They don’t care that we, the medical community, get it right for everyone else. THEIR loved one had a crappy ending, and the complicated grief of such a nightmare of sights and sounds and smells and hours to weeks of feelings of helplessness, the lingering guilt about not being able to do more and second-guessing themselves in hindsight for not pushing more, aren’t diminished by our hasty defense of the field.

We humans do this. We don’t want someone to think less of a group of people, especially our own, and so we quickly tell the person harmed that their situation is an outlier, which can leave them feeling that their grief has been diminished, brushed aside, or skimmed over and ignored.

We’re even more quick to do this about things near and dear to us or when we feel personally attacked and accused by the person speaking their truth out of their understanding of the experience.

Certainly, there are a LOT of misunderstandings lay persons sometimes have about the dying process that can play into this whole dynamic:

No, we don’t give their grandmother morphine and kill her, we finally get her out of pain and comfortable so she can finally relax, let go, and die as her body has wanted to do for hours or days.

No, we don’t let them choke to death, since most terminal secretions are simply saliva they forget or can no longer swallow, making the loud snoring sound that can alarm families and can sound like they’re strangling when they aren’t.

No, we don’t starve them or let them die of thirst, but instead protect their bodies from the food and fluid that they can no longer process and, if forced in through tubes or IVs or spoonfuls of jello, will spoil in and hurt their bellies or squeeze around their heart and lungs in fluid overload.

A lack of education and emotional support that allows families to be misinformed in these ways can be just as traumatic, and is just as much our responsibility, as actual service failures.

But what we need when we’ve experienced a trauma, and witnessing a loved one have a complicated death IS traumatic, is compassionate listening, empathy, validation of our experience, and normalization of our feelings.

“I’m so sorry that was your experience” goes a lot further than, “Oh, it usually doesn’t happen that way”.

“That never should have happened to you guys. I so wish folks had shown up better for all of you, in the way you deserved. It breaks my heart that didn’t happen for you.”

We do not need someone to explain to us, at least at first, why we’re wrong and why what we experienced isn’t what happened. Maybe down the road they can hear possible alternative explanations to their situation, but in the acute stages of grief we’re usually not ready to hear it without feeling the other person is gaslighting us, denying our experience and pain.

We must be honest that failures do happen in our field.

And, let’s be clear, sometimes we really DO drop the ball, and badly!:

The doctor can’t say the words, “It’s time to talk about hospice” and keeps pushing with treatments that lead to more suffering, false hope, and less quality time with loved ones before the time of death.

A nurse is having a bad day or bad life and isn’t as compassionate and patient as is needed and deserved in delivering information to loved ones about what’s going on, or gets curt and rude when asked questions or defensive when challenged for more explanation or help.

A staff doesn’t provide adequate pain management or other symptom control and a person is left suffering while loved ones look on in helpless horror.

A hospice drops the ball or has their nurses and nurse aids carrying way too high of a caseload and the staff doesn’t show up, or a pharmacy doesn’t deliver the right meds or do so timely, or a social worker is on vacation and there is no backup to help with VA insurance paperwork, or the medical equipment company brings the wrong or faulty equipment, or the doctor doesn’t prescribe enough meds, or the chaplain prays according to your religion but calls the patient by the wrong name the whole time.

We screw up, we have service failures. It’s gonna happen even to the best of agencies.

Poorly-trained, poorly equipped, and flat-out dysfunctional teams that have no business being in business DO exist. Yes, they are the exception and not the rule, but to deny their existence is to deserve the loss of our halo. We only get to keep it if we acknowledge that we’re imperfect and continue to work our butts off to make our industry ever better.

But there is hope, and it’s us!

There are things all of us–1) loved ones of a patient that had a bad experience and want to see that never happen to anyone else, 2) lay persons who want to take action to make things better before they and their loved ones enter end of life care, and 3) professionals who desperately want our field to continue to live up to the halo effect we’ve carried for decades–can do to make a difference.

In the next post, I’ll share more about this whole issue and the chance to re-story the bad endings that have happened, even as we work to make certain such moments never happen again. In the final post of this series, I’ll share a list of resources and advocacy opportunities that we can all engage in to make everyone’s story better in the end.

For now, please hear me.

If your loved one had anything other than what you or they would call a good death, I’m so sorry. You have my commitment to keep working to help make sure those moments don’t happen for others; not that it makes your pain any better, but perhaps it can ease your heart just a little, especially if you can take part in making a difference, and you can. I’ll show you how.

For the dedicated men and women who are hospice and palliative professionals, or other healthcare providers, our halo is not gone just because some of our colleagues, and even we at times, fail to get it right by omission or commission.

It may have slipped, gotten a little tarnish over time, and be in need of repair, but we are still hospice angels in the best possible way who bring peace and comfort and quality of life and death to millions of persons across the globe.

With continued vigilance and effort, we will only get better with time and industry maturity, so long as we do not lose our hope or our incredibly tenacity that would make Dame Saunders proud.

For what it’s worth.

If you’ve experienced the death of a loved one, I speak to the topic of finding meaning and even sorting through the trauma of a loved one having a less than picture-perfect death among other topics in Sharing Our Stories: A Hospice Whispers Grief Support Workbook. Designed for individuals or groups, the eBook version is only $7.99 and is available through Amazon.

Peace,

Carla

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No Shame in Grief: Letting Go of Facebook Perfect Suffering

Posted by Carla Cheatham on

February 22, 2017

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By Carla Cheatham (a 4-minute read)

You may have heard the term, “Facebook perfect”. It’s the idea that, as wonderful as social media can be in connecting persons and providing the immediate sharing of information across the globe, it has a downside.

How often do you clean your house before someone comes to visit? I’m sure I’m not alone in straightening up before the housekeeper comes! In fact, I often joke that I pay her not so much to clean my house but to keep me accountable for decluttering and putting things away. I’m about to turn 46, but there’s still a young part of me that objects to cleaning my room.

We do something similar when we share ourselves publicly. Even before walking out the door we shower or at least put on a baseball cap to cover our bedhead.

When we share on social media, we cannot help but follow the same model. Our mothers instructed us to put on clean underwear before traveling in case we were in an accident and to suck in our guts so our bellies wouldn’t show. Some things stick with us.

How many of us hurt ourselves, with aching backs and restricted breathing, by walking around with a way too tensed up torso trying to hide that our muffin top exists?

Before group pics go on Facebook, Instagram, or Snapcha, we get our friends’ approval, because someone always thinks their chin or eyes or hair isn’t just right. We put the best of our smiling lives out there for everyone we know to see.

We don’t share our angry faces when someone almost runs us off the road or post the ugly things we yell things at them from the relatively safe anonymity of our cars. We don’t post our snarking fights with our partners or nagging of our children or their rolled eyes and pouting lips in response. We don’t write about the one more date that was a dud or the loved one that relapses, again.

We don’t share that we’re terrified about keeping our jobs or paying our bills or wondering if we’ll ever be as happy as the smiling Facebook perfect lives of our friends that scroll on our newsfeeds. In fact, increasingly research tells us what many already instinctively know—comparing ourselves with what we see of our friends on Facebook can leave us feeling depressed.

Anytime we compare ourselves with others, especially with the reality we think we see on others’ public faces, we set ourselves up for judgement of ourselves.

Based on her research about shame and vulnerability, University of Houston School of Social Work researcher and professor and speaker of TED Talk and Oprah fame, Brene Brown, has a LOT to say about the dangers of comparison. Check out her incredible book, The Gifts of Imperfection: Let Go of Who You Think You’re Supposed to Be and Embrace Who You Are.

We want to share the best of ourselves and, please hear me, there’s nothing wrong with that! Of course we want to put our best foot forward. Of course we want to present our best selves. It takes courage to show our belly and air our dirty laundry, and many folks, in their own sense of shame, don’t want to see it, either.

But that’s the issue—shame (something else Brown writes and speaks quite a lot about!). Shame holds us back from vulnerability and authenticity, and when we avoid these two things, letting people around us know how we are really REALLY doing, we rob ourselves of the support we need and deserve during tough times.

Certainly there is great wisdom in carefully choosing to whom we bare our soul or expose our belly. We protect ourselves, out of deep wisdom, from sharing our tender selves with those who have not yet earned that sacred right. Each of us has our own story about trusting the wrong person and winding up on the receiving end of their own deer-in-the-headlights abandonment, judgment, shame, or other betrayal.

But trying to pretty-up our grief and make it Facebook perfect does not serve us well.

Thinking we have to put on a brave face so others comment about how strong we are only sends grief underground, and tells others they have to suck in their emotional muffin top, too, as if it’s something of which we should all be ashamed.

Do we really want to send each other that message?

I’m not saying we want to emotionally vomit all over everyone on social media. I’m not necessarily suggesting you have to bring the phone under the covers with you as you eat a half-gallon of ice cream and show everyone what’s really going on all the time.

We are allowed to be judicious with our sharing and protective of our grief process. We MUST be mindful about whom we invite into our shrunken and shaken world when in the midst of acute grief.

But there’s a balance to strike here so that we don’t send grief, our own or others, underground with the message that it has to wear clean underwear and have no double-chin or bedhead to be worthy and acceptable or loveable or supported.

We must stop telling ourselves and each other that grief has to be “brave”, stoic, or Facebook perfect.

Real bravery in grief is to feel it, experience it, express it, and let it be what it needs to be without fear of shame and without judging ourselves.

If being demonstrative or expressive isn’t your way, if you’re more private and guarded and are more likely to process things internally, that’s okay, too, so long as it’s the result of what you need for your process and not because you don’t feel like you’re allowed to let it be seen.

Let other people own their own judgments about your life; don’t take them on because they aren’t yours. Let them wrestle with their own misguided beliefs about how grief is supposed to act. Let them face their own internalized shame about expressing what get labeled as negative emotions. It’s good for them to have to deal with their own judgments and it’s bad for us to take others’ shame in as our own.

Find safe places to let your grief be seen, really witnessed, and cared for. Sniff out the people in your circles who get it and are able to sit with their own discomfort well enough to be with you lovingly in yours.

Let us all learn from each other that there is no shame in grief; that when someone we love dies or when the world as we know it or thought or hoped it to be falls apart in some other way that it’s natural to have a reaction, and a strong one that involves snot and yelling at G-d and cussing masterfully like a sailor and confusion and regret and situationally appropriate short-term depression and flat out not having it all together.

My friend and writing mentor, Spike Gillespe, does a beautiful job of not giving much of a crap about others’ judgments and shares her grief, from extreme trauma, and her resulting bouts of severe depression with the world through her public posts.

She also writes beautifully about the role a dedicated meditation practice has had in the last several years in significantly improving her depression and ability to manage it in her book Sit, Stay, Heal.

During one of these recent bouts she shared daily on social media, she noted that some were really worried about her and wanting to fix her pain rather than let her be with it, experiencing and caring for it as she needed to. We chatted about our thoughts and experiences with this phenomenon of others’ reactions that can take the focus off of our pain and make it be more about them and their struggles with our emotions, and how all of this can be an invitation to suck it up and tuck it in.

But we know that we simply can’t.

Silenced grief can sometimes be just as or even more destructive than the original source of our pain itself. We can’t afford to send grief and suffering underground or hide it behind fake smiles.

We have to lift the veil and help teach each other that grief need not be prettied up, hurried up, airbrushed, edited, or silenced.

There is no shame in grief. You can share your own grief story with others through my forum at http://hospicewhispers.com/forum/ to help each other learn from the hard-earned lessons grief teaches us.

For each of you who takes the brave step of letting your grief be seen, thank you for giving others of us permission to be real and give our grief the space it needs to breathe and move, and find healing over time.

For what it’s worth.

Peace,

Carla

Read more about coping with and owning your grief in Sharing Our Stories: A Hospice Whispers Grief Support Workbook available through Amazon and wherever books are sold.

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When the Tree Just Wont Come Down: Creatively Holding Onto Memories

Posted by Carla Cheatham on

February 15, 2017

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When the Tree Just Won’t Come Down: Creatively Holding Onto Memories

They got her home just in time for Christmas. It was her favorite holiday.

She loved nothing more than to see the decorations and lights glisten on the tree, with memories shaped like 5-year old’s handprints and sports figurines. Each one had a story, of the 42 years she had with him until 3 years before, and of their 4 kids and 8 grandkids.

My friend was exhausted from long weeks at the hospital until the doctors said it was time to go home with hospice care, but she was determined to get the tree up for her mom. She was too tired to say “no” when we showed up to help.

As her mom slept off the ambulance ride home in the next room, with a baby monitor on her bedside table, my friend directed us in putting together the tree, covering it with twinkling lights, and making sure the favorite ornaments were front and center.

The durable medical equipment company arrived and set up the oxygen unit and other equipment in the living room, with the hospital bed sitting in the middle of all the activity, directly facing the tree. After the nice young men left, we worked together to get her mom into the electric bed where she could be adjusted to both her comfort and that of those caring for her.

She was too weak to do more than smile at the dazzling display in front of her, but her eyes caressed each story hanging from metal hooks and yarn loops and glistened with love and pride for those whom she loved.

One last time, she enjoyed the sounds of her family’s laughter and delighted squeals ringing out over the crumpling paper and once-a-year songs and holiday specials. She absorbed all of this with her eyes now closed, lifting her nose to catch wafts of freshly popped corn, dressing, spiral-sliced ham, and pumpkin pies brought and shared around her by family and friends.

Three days later, more nice young me came in and carried her mom gently from her bed, as the family quietly wept and walked her out to the dark van.

The medical equipment and unused supplies were packed and moved. The bed went last. But the tree still stood.

“Not yet…”, my friend said.

“Not yet.”

“I just can’t.”

“I’m not ready.”

We understood.

Her beloved had an idea, and invited our help. From a box in the attic, construction paper hearts cut carefully by small pairs of stubbed scissors and two generations of tiny hands over the course of 40 years came down. Macaroni necklaces on red yarn, and other valentines, found their way to dangle amongst the twinkling lights of the tree.

We carefully wrapped Christmas on February 13^th, putting the boxes not too far away just in case this was too much, too soon.

When she came home, she stopped where her mother’s final bed had been, facing the tree. Too full of emotion to speak, her eyes caressed each story hanging from metal hooks and yarn loops and glistened with love and pride for the memories of the mom whom she loved.

“It’s perfect”, she said.

For a full year, family and friends in various groupings would come take part in this ritual of re-decorating the tree for holidays, anniversaries, and birthdays. With each one, there was more laughter, fewer tears.

The bitter never left, but there were fewer cracks left for it to dwell amongst the loving memories that kept her alive in and among them, glistening so vibrantly inside that the outside ornaments finally weren’t needed anymore.

The tree eventually went down after one more Valentine’s Day. They were ready. It was time. And it was all perfect.

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Let Grief Lead You by Your Finger

Posted by Carla Cheatham on

February 8, 2017

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By Rev. Dr. Carla Cheatham, 4-minute read.

I have been spending a lot of time with a child in my life, recently, and the experience has given me a bit of a different perspective on the way we interact with our grief.

My early career was in child and family therapy and my time in parish ministry meant I was constantly around children. I’ve always had the joy of being “Aunt Carla” to a lot of my friends’ kids and grandkids. I’ve been a baby-rocker and even children’s coach at times in my career. I understand the developmental stages children go through to develop a strong sense of self and security within their world.

I’ve spent the past 10 years working at the other end of life, supporting patients and loved ones in the face of a terminal illness. My professional focus, therefore, has been largely on grief and psychosocial-spiritual healing.

Last week, something clicked between these two worlds of mine in a way that is still sinking into my heart and mind.

The child with whom I’ve been spending time is clearly in the stage of developing autonomy and beginning to initiate more within her little world. She frequently clasps her tiny hand around my forefinger and tugs with all her might, as she leans the full weight of her slight toddler frame in the direction she wants me to go. In her lilting voice, insistent with excitement, she tells me, “M’ere”.

If ever I hesitate even for a moment, or move too slowly for her taste, she becomes even more demanding, “M’on!”, and puts both hands around my fingers to pull harder.

She takes me to where she wants to go and shows me what she needs me to see. She tells me all about whatever treasure or trouble is consuming her focus and commanding her attention, just as she commands mine.

On one recent trek, being led on her latest urgent adventure, I smiled at the preciousness of this moment. I could see this young human developing before my eyes and finding her way to a sense of calm interdependence in this world, neither needing others too much nor being isolated behind a guard of total independence.

I heard in her voice how crucial this locust shell, or whatever she needed to show me, was to her. I felt how much it meant to her building psyche to know that she could influence a grownup to come with her, and count on them, on me, to see and understand what was of the utmost importance to her in that moment.

I knew it wasn’t about the dead butterfly she was leading me to stoop over and examine, or the favorite book she wanted to lead me to so she could plop into my lap while I read to her. It was about the connection, about creating a sense of safety that her voice had power, that she could trust herself to find what she needed, dare to ask for it out loud, and count on others to respond when asked. She needs to know that what is important to her will be important to others, if for no other reason than because she is important to them.

She needs to know she has safe space within which to explore and practice; that there are boundaries of containment that will not let her go too far and a finger to cling to that will not let go until she’s ready; that she is not a nuisance or too much or too needy or too shameful to scoop up and snuggle and be held until she’s ready to move on her own, once again.

Here is what we know from developmental psychology—that if a child’s initiative is squelched, controlled, or punished, the child will come to feel insecure and guilty, as if they are a nuisance. This will prevent a child from feeling safe within the world, and within their own skin.

They will shut down in shame and out of self-preservation, since there is no one there to respond to the protestations expressing their need. They will learn not to trust or feel hope. Their creativity will be squelched and their spirit will get small, even as their body grows.

Creativity, hope, and trust are important elements in grief. As we seek to build a new life without the one who (or thing or ability that) is no longer there, we need to have a sense of self, of trust, and of hope in other connections to ground ourselves in this world. As we revise our narrative to find meaning and make sense of our loss, we need to be able to creatively re-imagine our world, lest we become stuck in our former one.

As this tiny human being earnestly pulled me with her on her journey, I caught a glimpse of grief personified. When I have allowed my grief to take me by the hand, lead me where she needs to go, tell me what she needs me to hear, pause to sit and reflect on memories as colorful dead butterflies, plop down in a beanbag to hold her gently with the comfort of a good book, she trusts me and moves freely without shame exactly where she needs to go.

As I rest when my grief tells me she needs to rest, eat when I know that it is time for that to be important, listen intently to both her words and her silence, bring her into the light of safe connection with others or sit with her as she hides for a time in the cool darkness of a blanket fort, I’m telling my grief that I do not see her as a nuisance or too needy or too much.

I sweetly tell her that she is valuable and worthy and even normal and that the way she feels is completely understandable; that bullies who do not understand or who lash at their own fears of grief by lashing out at or shaming her have no room in her world, so we are to avoid them out of self-protection.

I let her know that she is not alone, that I will not abandon her, and give her the hope that someday she will feel the fullness of safety and love and belonging once again. And until she does, I am with her.

When I allow my grief to lead me by the hand, its innate wisdom knows exactly where to take me. By following it, I give it the space it needs to safely develop to a new and even healthier place.

Of course, a healthy parent makes room for a child to lead and explore and initiate while also providing boundaries for a sense of safety. Bedtimes are needed. Good food must be taken in. Personal grooming is important. Chores must get done.

But I never again want my grief to feel as if it has no room in this world or that I resent it. I do not want to set either of us up for it to shut down in shame or push back hard on me in rebellion.

I want it always to tell me what it needs me to know, to feel seen and heard, shown up and well cared for, and to have hope that, over time, peace will outgrow fear and despair.

For what it’s worth.

Peace,

Carla

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The Dance of Trauma and Grief: Day 30 of #31DaysWithGrief

Posted by Carla Cheatham on

January 30, 2017

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31 Days of Walking with Grief: Others’ and Our Own

Day 30—The Dance of Trauma and Grief

This is a month-long series to support persons grieving and those who love them. It includes content from “Sharing Our Stories: A Hospice Whispers Grief Support Workbook” available through Amazon and wherever books are sold.

On Day 6 of this series, I wrote about The Many Faces of Grief. As this 31 Day series draws to a close, I want to say a bit more about the intersection between Trauma and Grief.

Grief related to loss is an expected part of our lives. We know that we and others age and that changes will come, including the death of others and even our own. We don’t like to think about it and, though on some level we know to expect it, it still stinks and causes sadness, distraction, and other symptoms that usually pass within weeks or months to a couple of years.

Trauma is not something we naturally expect. Traumatic experiences or events that cause physical or emotional harm can overwhelm our capacity to cope and the effects can be lasting, leaving us terrified and feeling vulnerable, powerless, and unavoidably distracted.

When speaking of the interaction between trauma and grief, we’re still working out the details.

Some grief experts believe that all loss results not only in grief but also trauma, as the loss is traumatic in and of itself. Others disagree and believe loss may involve and/or lead to trauma, such as a death in a car accident, but not all loss meets the criteria of traumatic loss. Therefore, not all grief will contain trauma but some grief could be traumatic.

More agreement exists that the experience of trauma will naturally result in grief in addition to traumatic distress. Trauma often involves a lack of trust, safety, feelings of normalcy, and it challenges our existential beliefs about how the world should be. Those losses contribute to grief that must be mourned in addition to the trauma from which the person must recover. Therefore, most agree that all trauma involves some form of grief.

Teasing out the relationship between trauma and grief is important because the treatment interventions differ between the two.

Grief support typically involves reminiscence and other means of helping the person accept the absence of the deceased while creating a new way of connecting to the person’s memory and moving on with life in a new way.

Trauma is most often treated using cognitive behavioral and/or physiological interventions designed to help the person feel safe once again and cease the intrusive replays of the traumatic event.

When both are present, the key is determining how to treat both and in what order. In some cases, treating the severe distress of trauma must come first so the person can feel safe enough to do any further work. There seems to come a point, however, when the person must grieve the losses resulting from the trauma before they can let go and continue healing.

I spent a great deal of time healing from a traumatic event and was doing pretty well, but then deep grief arose to which I had to attend. Once I did, I achieved an even deeper healing and freedom than ever before. It profoundly impacted my professional work by giving me a greater perspective and more profound respect for the importance of the role of grief in trauma.

In the Day 26 post in this series about the Myth of Moving On, I shared William Worden’s Tasks of Mourning. There is a general agreement amongst grief experts that a combination of factors influence the depth and severity of our grief and Worden’s model is one those most frequently used.

There are many ways these factors may combine, or collide, to result in traumatic grief. If the death was the result of an accident, natural disaster, crime, or sudden and unexpected illness, for example, the seemingly capricious nature of the death can significantly complicate our grief. A grandparent’s death from a long-term illness can be much easier to wrap our heads around than a drunk driver crossing the yellow line and killing a child.

Losing support from someone on whom we depend financially, physically, and/or emotionally can pull the rug out from under us and can be experienced as traumatic as it threatens our security. The death of someone similar to us in some way can also hit too close to home, leaving us feeling unsafe in the world and experiencing the loss as traumatic.

I once performed the crisis debrief for student medics who were the first responders after a significant tragedy at a campus. These students performed beyond admirably, earning the respect of the “professional” responders who showed up to relieve them as rescue efforts continued.

Many were already fairly seasoned as paramedics and EMTs, but seeing their classmates who looked and dressed like them, whom they even recognized from campus and classes, was just way too much. It blasted past their natural defenses, the mechanisms that protect us from being constantly afraid of something happening to us, and made them come face-to-face with the uncertainty of life.

That, as much as anything, was what they struggled with as they mourned their classmates and dealt with the trauma of the tragedy.

Whatever our story, whatever loss we’ve faced, it is important to recognize any trauma that may be involved, complicating our grief. I, like others, resist the use of the word “abnormal” grief, because we do not wish to pathologize an understandable response to inordinate circumstances. If trauma has been a part of your experience, it is worth seeking support for the grief related to the losses that accompanied the trauma.

Getting the proper type and amount of support is important, and certainly understandable and well-deserved. I hope you find what works best for you and your unique situation.

Peace,

Carla

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Living with the Misunderstanding of Suicide: Day 29 of #31DaysWithGrief

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January 29, 2017

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31 Days of Walking with Grief: Others’ and Our Own

Much of the poetry in Sharing Our Stories was written and graciously offered to the workbook by my friend, Janie Cook. I thank her for agreeing to open her tender heart, once again, and share it with us. You can learn more about Janie and her story at the end of this post.

Day 29—Living with the Misunderstanding of Suicide

by Guest-author, Janie Cook

To lose a loved one to suicide creates a uniquely complicated grief – one that is often deeply misunderstood, because to take in why someone would die this way requires opening up to their immense psychic pain. Society wants to avoid facing that pain, that fear, and in so doing creates a stigma around suicide that shrouds it in secrecy and isolates those who grieve in silence.

Stigma reveals itself in the language society has adopted to describe a death by suicide. The common phrase we hear is that someone “commits suicide “– similar to the way we talk about “committing” a crime or a sin – instantly labeling that person and negatively characterizing their death. Add to that, the judgmental facial expressions, the shame cast upon your loved one and the walls that go up around you as you try to live with this loss and you see the obstructive and destructive impact stigma can have.

Our family has tried to be patient with these comments and see them as a misunderstanding. We try to remember and have compassion for the fear behind them and then, with as much kindness as possible, offer our words of love in describing who our son was and the lethal impact of his acute, untreatable depression.

There is a Hebrew word that has helped me immensely to deal with this part of my mother’s grief. Part of the Jewish Passover Seder ritual ,called the Haggadah, is the word “dayenu” (which means “it is enough” or “it is sufficient”). “Dayenu” is repeated as the refrain in a Passover song that celebrates each one of God’s liberating acts as though it alone would have been enough to bring peace. This song strikes me as a powerful celebration of any one of the moments in our lives when we recognize Love’s gifts as whole and complete.

So, when the stigma of suicide announced to me that Matt’s death was inappropriate to talk about, not worthy of being grieved and therefore woefully misunderstood, I heard healing in this word, “dayenu”, and wrote my own verse to the song:

Matt lived his life in love,

Dayenu.

He gave himself away for those he loved,

Dayenu.

He is remembered with deep-hearted kindness and gratitude,

Dayenu.

He left this life loving us,

Dayenu.

And if we are the only ones who understand,

Dayenu.

More About Janie’s Story, from the Introduction to Sharing Our Stories:

Many of the poems were contributed by friend and colleague, Janie Cook, and are shared with her gracious permission. Janie and her husband have two children—a son and a daughter—and live in Austin, Texas.

Their son, Matt, died of depression through suicide that claimed his life in 2007. They experienced the sudden death of a child and the complicated grief that persons experience when society heaps stigmas born of ignorance and fear on the families of those who make this choice.

It broke their hearts, but also broke their souls open to greater compassion, love, and understanding. It led Janie to begin working as a facilitator of grief groups and to share her experience with others who are mourning, especially after the death of a child, through her blog at livingwiththelossofachild.blogspot.com.

Again, many thanks to Janie, and others, whose words are shared throughout this text.

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Is There Space for Gallows Humor: Day 28 of #31DaysWithSuffering

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January 28, 2017

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31 Days of Walking with Grief: Others’ and Our Own

Day 28—Is there Space for Gallows Humor?

In the midst of our discomfort with death, we may deflect away strong feelings of grief through the use of humor. This can be a challenge for us if it leads us to avoid either our feelings or those of another.

Other times, however, humor can be a very effective tool for coping as it provides some distance from the pain and reminds us that more still exists to live for beyond our grief. It can be hard for some to feel free to engage in or express humor, fearing doing so in a way that is offensive or hurtful to others.

We’re wise to be mindful, yet it is also important to not rob ourselves of the fullness of life, even as we life in the face of death and other loss.

I’ve shared elsewhere, through Hospice Times, an excerpt from Hospice Whispers: Stories of Life that speaks to this through a story called, “I’m Trying to Die Here”. After reading this story, you may explore the related reflection questions that are published in Sharing Our Stories: A Hospice Whispers Grief Support Workbook, and which I have also shared here for you, below:

I’m Trying to Die Here

Reflection Questions from Sharing Our Stories: A Hospice Whispers Grief Support Workbook

1) Where did you or your loved ones find humor in the midst of your sadness or grief? What was that like for you? For them? Is it helpful or disturbing for you?

2) When and why might humor not feel good to someone who is hurting?

3) What is your reaction to my shock at the dark humor of the therapy team I worked with in my younger years, as described in the beginning of the story?

4) Where do you believe the line is between irreverence and humor? Does that line change for you at times?

5) I mentioned in this story that most often we healthcare staﬀ get to answer the same questions multiple times. When we experience grief, our thoughts and feelings can be quite disorganized as much of our inner physical and emotional resources are going toward coping with the stress.

What types of forgetfulness or fuzzy-headedness did/do you experience? How do you find gentleness for yourself during these times?

6) What diﬀerences are/were there between the ways you and other family members grieved and dealt with the stress of facing the death of a loved one? How do/did you navigate those diﬀerent ways of grieving and handling stress?

ACTION PLAN:
Memories or thoughts arising from this story to hold onto…

Memories or thoughts arising from this story to let go of…

What action steps might I take to encourage my journeys of grief further along?

What might I need to take time to simply sit with?

What lessons or insights did I gain through remembering my own, or hearing of others’ journeys?

——————————-

My hope is that this excerpt and the entire series will lend a little insight to let you know that you are not crazy, you are not alone, and that you will find your way, perhaps even with the tool of humor at your disposal.

I’m glad you’re with me on the journey.

Peace,

Carla

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Tags : #31DaysWithGrief, bereavement, caregiver support, carla cheatham, counsel, Death of a loved one, end of life, grief, grief counsel, Grief Workbook, Hospice, hospice whispers, humor, Loss of a loved one, palliative care, series, sharing our stories, support

Am I Stuck? Depression and Grief: Day 27 of #31DaysWithGrief

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January 27, 2017

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31 Days of Walking with Grief: Others’ and Our Own

Day 27—Am I Stuck?

We’re not sure we know how to do this…

“Am I stuck?” This is one of the most common questions I hear from those who are bereaved. Having never done this before, and living in a society that is still struggling to catch back up in our willingness to discuss death and grief, we’re often lost at sea and wonder whether we’re doing it right.

We are bombarded by others’ ideas about what our grief should look like, how we should handle it, and how long it should last. The good news is that, statistically speaking, you’re probably doing it just right! Only about 10-15% of cases turn into what is known as Complicated Grief that requires more professional intervention and support.

Other times, a piece of grief can linger, popping up from time to time, but in a way that is only uncomfortable for a moment and does not truly hold us back from working, sleeping and eating, having relationships, and mostly enjoying life. In those latter and more severe cases, clinical help is a must. But even those periodic and momentary gut punches deserve a space to be processed and healed.

A loved one died years ago. It was complicated for me by the fact that we held a difference of belief that was significant enough for her to choose to distance herself from me. That piece was already a source of huge sadness and grief, but it became even more so when any chance for reconciliation and repair died along with her.

It comes up for me from time to time, and I’ve been working with it to find even more healing. Though it has not been severe enough to interfere with my daily life, I attend to it because any rocks on my path can slow me down, hold me back, and cause an unnecessary ache in the toe I keep stubbing on it.

An excerpt from Sharing Our Stories…

Sometimes, grief can be even more complicated, like the story from this section of Sharing Our Stories: A Hospice Whispers Grief Support Workbook:

One woman contacted me after reading Hospice Whispers, asking for my help. She said she didn’t know what was wrong with her, but that everyone was telling her she “should be over it.” When I asked her what SHE thought, she replied,

“Well, I should be, shouldn’t I? But I’m just not, and I can’t make it happen. Then I feel guilty and ashamed and even more alone and angry and misunderstood, which pisses me oﬀ even more!”

“Find places where people can let you just be. When you find that, and don’t feel rushed, I’m pretty certain you’ll notice something loosen inside of you over time. ‘Wallow’ as long as you need to. In fact, roll around and nest in those feelings as much as you need. When you’re done with them, you’ll know. Life usually doesn’t allow us to stagnate too long, and if we’re stuck, we’ll eventually know it instinctively from within, not because others are rushing us to move on their timetable.

Feelings need room to move and breathe. When they feel pushed back against, they tighten. When they are given space, they can relax and shift as they need. It will happen naturally, without pushing, from you or anyone else.”

Certainly, there are cases in which people do get stuck and the natural grief process stalls. In others, the naturally intense feelings of grief can become so magnified that it leads to dysfunction. The body can get caught in a pain loop and need outside assistance, and there is no shame in getting support from a counseling professional when such complicated grief arises.

Places like The Center for Complicated Grief through the Columbia School of Social Work (https://complicatedgrief.columbia.edu/) and others can provide more guidance and resources on this topic.

I heard back a few months later from this woman who struggled with her grieving process. She had joined a special yoga class for those who had experienced grief. She laughed, “I thought it was ironic that you encouraged me to find a place to let my feelings move and breathe, and then I stumbled into this yoga class completely by accident. I didn’t have to explain myself to others in the class because they were there for the same reasons. I could just go in and, well, be!”

I could hear in her voice the very relief she described. It was beautiful. And according to her, it worked to help move her to a new place. And THAT is exactly what I hope this workbook will provide you—a safe space for your feelings to just be.

(Sharing Our Stories: A Hospice Whispers Grief Support Workbook, pp 8-9)

What I did not take the time to share in the workbook is that I did assess her level of functional impairment—questioning to see if she was eating, sleeping, grooming, paying bills, working, engaging in relationships, etc. She was. But she was still angry with God and could not bring herself to attend religious services or celebrate religious holidays with her family, and they were concerned it was time for her to move on.

She wanted to do so, but pushing and forcing was not the answer. Also, as I wrote in yesterday’s post about the factors that can mediate the mourning process, some circumstances can make it more or less complicated and hard to endure. In this case, there were some circumstances I’ll not share in order to protect her identity, but that significantly complicated her grief, and would have for ANY human being.

Given the complicated circumstances, her grief was completely understandable and just needed more time than would most, but it also needed support! As she found safe spaces to give her that time and freedom to move, it did.

Is it grief or depression…or complicated grief?

Now, for those cases that are complicated in severity and/or duration, it is important to seek professional support because the natural grief process is either overwhelmed by the severity of the circumstances of grief and/or the natural process has stalled. Normal grief can mimic depression but is not considered to meet the clinical definition until it has lasted longer than 6 months.

Freud is often quoted for his distinction between grief and depression, “…after a loss, the world looks poor and empty; while in depression, the person feels poor and empty.”

When any 3 of the following last for at least 6 months, we consider the person to be experiencing Complicated Grief: thoughts and feelings of grief that are intrusive, leave a person feeling numb and/or in disbelief about the death, empty and purposeless, meaningless, irritable, and poorly functioning in their work, relationships, etc. If that is the case, then there is a need for an intervention.

There is no shame in this. Usually, there is a reason the grief is complicated that can be tended to with support. When an infection invades our bodies, our natural immune response kicks in to help us heal and recover. Sometimes, that infection is more than our system can take on and we need antibiotics to support our immunity. That is not weakness. That is not “crazy”. That is life and it happens, especially when complicating factors super-size the germs or hinder our immune response.

To be clear, grief doesn’t need to be complicated to seek support! Grief counselors and groups are always ready to walk the potentially scary and overwhelming road with someone who is in mourning and deserves an extra dose of support.

Whatever your circumstance, continue to be patient, be gentle, avoid shame at all costs, and find the support that your grief deserves.

Peace,

Carla

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The Myth of Moving On: Day 26 of #31DaysWithGrief

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January 26, 2017

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31 Days of Walking with Grief: Others’ and Our Own

Day 26—The Struggle of Moving On

I love lists and formulas. I’m a good student. Tell me what to do and I’ll do my homework and check off the list and be done!

If only life, and grief, was quite so neat and tidy.

Having patience with our grief is often hard, and of course we want to hurry up and not feel sad, angry, lost, scared, overwhelmed, distracted, and exhausted anymore. I think this lack of patience with our own mourning is part of the reason we struggle to be present with others in theirs.

So, for everyone’s sake, let’s look at this concept of moving on.

The “it takes a year” thing is a myth…

One of the great, enduring, and completely erroneous myths about grief is that it takes about a year. Some research shows the acute stage of grieving can be over for many in 3-6 months while for others it can last much, much longer. Many factors can contribute to this variable timeframe.

Grief expert, William Worden (2002), proposed 7 Mediators of Mourning, including:

relationship to the deceased (spouse, co-worker, etc.)
nature of the relationship (secure, dependent, ambivalent, etc.)
cause of death (natural, traumatic, unknown, etc.)
history of other loss (unresolved family dynamics, personal and familial struggles, etc.)
other stressors (financial, familial, work, etc.)
individual factors (age, gender, culture, personality, esteem, coping, etc.)
social factors (support, engagement in activities, other relationships, etc.)

Each person’s unique circumstance can strongly influence how hard and deep and long their acute stage of grief may be. There is no shame in any of this. It is meant only to help understand and even predict what a mourner might expect and the type and amount of support they may need.

It is not a set formula, but an invitation to see each loss as unique. One might ordinarily expect the acute stage of grief, which is a period of distraction and likely disturbance of sleep, activity, work, etc., to be resolving around 6 months (though that does NOT mean that the grieving is over!) However, if there are other factors that come into play, this resolution of acute grief may take longer.

For instance, if a death involved an autopsy that left loved ones in uncertainty for months about the cause of death, this may delay the grieving process and open it anew when answers are finally received. The circumstances are complicated, but this does not mean that the grief process being a bit longer is in any way inappropriate, given those circumstances.

“I was surprised to find the second year was actually, in some ways, harder…”

Some persons are often caught off guard when they experience the grief of the first year and feel ready to begin moving on with life, just to find that the second year is actually harder, in some ways. No matter how much we understand about grief, that blasted year time-line gets stuck somewhere in our expectations, and sets some up for a shock.

But it’s more than that. Past the anniversaries, we move into “firsts” without our loved one there. The pockets of grief that arise with this are often not anticipated or even noticed by persons around us, so we have even less support than we did in the first year.

One woman shared:

“I thought I was good! I passed the one-year anniversary, which was hard as I remembered the sights and sounds and smells of the season and in some ways relived what I had been doing the 365 days before and how painful it was. But I was mostly okay! And then…

It was the first year of my adult life that he wasn’t a part of. I went to my first party without him by my side, received my first holiday cards addressed only to me, had persons asking me if I was ready to date which was something I hadn’t even considered in over 20 years. Triggers were everywhere that second year, and I wasn’t prepared for it.

I started moving even further into a life without him. As much as I wanted and thought I was ready for moving on, it was like I had to grieve letting go of my grief, which was one of my few connections left and another way of having to let go of him, if that makes sense.”

Another friend, during the recent holidays, commented on January 1^st about how stunningly hard it was to move out of 2016, the last year in which he had his husband with him. By going forward into 2017 alone, he said it was just as painful as if he had moved out of the home they had shared for their 48 year relationship. It was the first year in his adult life without the love of his life by his side, and it was surprisingly hard to make that one more step away from him.

There’s nothing wrong with you…

You may not experience this. But if you do find that each new step forward also has its own moments of grief, please know that there is nothing wrong with you. It is an understandable part of the process. If you’re stuck in your grief, which only happens about 10-15% of the time, you’ll usually know it. I’ll write more about that in a future post in this series.

For now, please hear this as a gentle reminder to be gentler with yourself and each other than you think you might need to be as you move into a fresh new start. As sweet as the new often feels, it is a new that is coming without the one you still wish was available to see and touch and hear, and the bitterness of that can easily dampen the moment.

When others do not understand this, it can send this part of your grief underground, leaving it disenfranchised. That which goes underground and is borne in solitude, can sometimes gather a sense of shame around it, even if cognitively we know that shame is not warranted.

Find safe places, other people who will understand or at least try, to share these bittersweet moments with. Just as your loved one is worthy of being remembered by you, still, your pain is worthy of being supported and cared for.

Peace,

Carla

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