I will never forget my grandma’s last days, surrounded by people who were half shaman, half scientist, and all good

We expected Nana to die years ago. When she finally went, it was both sadder and sweeter than we were prepared for

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I knew it was coming; I had known it was coming for years. I had seen my friends go through it, and I had spent many hours thinking deeply about what would happen. Comforted by theories on the nature of consciousness, seduced by feasible rationales for an afterlife, sobered by the practical science of what was really going to happen, I was prepared. And then she died.

My nana had been ill for a long time. Her final diagnosis, chronic obstructive pulmonary disease, came 12 years before she died, although the prognosis was no more than four. She had come close so many times that we had started calling her “the boomerang”. But when she went into hospital for the last time, although in our heads we constructed logical expectations of her coming back to us, in our hearts we knew she wasn’t coming home.

Losing someone close to you is something you can only really talk about once it has happened. All the cliches about grief that I had heard over the years became my reality. Half an hour after she died, my cousin Elliot and I sat in the hospital coffee shop, exhausted, paralysed, silently delirious, while a tiny white butterfly fluttered around our heads, flew a full circle above us and disappeared. Over the next week, the appearance of white butterflies comforted each member of my family at different times in some ineffable way. Despite our wildly varying degrees of faith, that delicate symbol soothed us with an understanding that she was OK: whether she was on a cloud with her brothers and parents, united on an unknown spiritual plane with a greater force as part of a universal consciousness, or just gone, she was no longer in pain.

It was very sad, of course, and that is the best it was ever going to be. The reason I say “the best” is that, if it were not for the acutely careful preparations of us all, including Nana, it could have been far worse.

Palliative care should not be as taboo or scary as it is to many of us. I would go as far as to say that it is the ultimate in wellbeing practices, when a person’s health has failed and all that can be done is care. The word “palliative” comes from the Latin pallium, a cloak, and in many ways this metaphor is apt. In the last days, a “syringe driver” delivered her a steady flow of morphine and anti-anxiety drugs that concealed the worst of her symptoms, shielded her from their effects, protected her from the pain, and even hid her from death for a few more hours or days. If she had not had that, she would have died of hypoxia on the Thursday, gasping violently for breath as she drowned in carbon dioxide that her lungs were too weak to exhale. Instead, she went on until the following Tuesday, my auntie’s birthday, not before she had me write in her card: “Life is worth living because you’re my daughter.” When she finally passed, it was a moment of peace.

(Note to doctors: if it could be called anything other than a “syringe driver”, I think everyone would be much happier. My bampy (grandfather) in particular was unnerved by the name and was initially convinced that it was going to speed up her death.)

On the Saturday, when we all first expected her to go, we played her favourite songs at her bedside: lots of Maria Callas and Ella Fitzgerald, and (who knew?!) Hot Chocolate’s No Doubt About It, a song that recounts Errol Brown’s alien visitation. We were gifted the time to rejoice with her in what made her joyful, emotional and eccentric. As she appeared to slip away, our tear-stained faces fixed around her in uncontainable smiles, sure that the hour had come, she boomeranged back again, just in time for The Chase.

Memories of moments in her final days are precious and I am gratefully aware of how lucky my family and I are to have had them. They exist because of palliative-care specialists. What a mystically unique role: part scientist, part shaman; half doctor, half priest; with careful words held equally as important as the careful drugs. Never hard-heartedly functional, and never “compulsively positive”, it is as if they are of the same station as midwives, just on the other end. I am profoundly moved by this practice. The UK is reportedly the best in the world at end-of-life care, which is cause to be proud, and there are calls from both the International Association of Research in Cancer and the World Health Organization to declare palliative care a human right.

As someone whose first close bereavement was sort-of-sweet-sad but without regret, I support these proposals wholeheartedly. I wish that all people could be treated with such deep compassion and humanity. I sincerely hope that, when it is my time to die, my family and I will be helped to prepare in the same caring, tender way that my grandmother and family were in Llandough on a long weekend in July.

Complete Article HERE!

How to Cope with Anticipatory Grief at Work

By Sabina Nawaz

At the end of a hectic travel season, I was looking forward to a four-day weekend. Right before boarding the plane for home, my phone rang. It was my mother’s assisted living facility. My stomach always tightened when their number displayed on my phone, but usually it would quickly ease. Not this time. Instead of the routine, “Your mother’s fine; we’re calling to inform you about…” this time the nurse said, “Your mother has stopped eating.”

My mother was at the end of her 15-year battle with Alzheimer’s disease and her life. Mom, who used to be an English professor, now had a vocabulary in the single digits. I knew that her quality of life was continually declining. Yet news of her imminent demise was a gut punch. I was thankful for the break in my travel so I could be with her and offer her as much comfort as possible.

Mom and one of my best friends died within a year of each other. In each case, I knew they were going to die, so I shouldn’t have been surprised to experience anticipatory grief — a distinct type of grief different than the grief we experience after a loss. Anticipatory grief involves coming to terms with the impending event, learning how to incorporate it into our reality, and planning our good-byes.

In our society, there is little accommodation for the intensity and duration of the grieving process. The typical length of bereavement leave is three to five days. There is even less institutional support for anticipatory grief. Neither my consulting work with numerous companies nor my research on grief support has uncovered any concrete data on workplace benefits specifically designed to help employees through a season of imminent loss. There are generic family care leave policies in place at about 67% of companies worldwide. A few days of paid leave is typical; additional unpaid leave of several weeks or more is sometimes available. In the U.S., the Family and Medical Leave Act (FMLA) provides for 12 weeks of job-and-benefit protected leave for certain kinds of family care needs. It’s unpaid and restrictions apply — for example, the employer must have 50 or more employees in the location for an employee to be eligible. Other criteria mean that many people don’t have access, and even if it is available, many employees may be financially unable to take unpaid time off.

What’s more, even when a death is expected, the timing is unpredictable, and the process may be prolonged. You likely need or want to continue working for the duration but may require special considerations. Your boss and colleagues know that they’ll cover for you when you attend the funeral, but how much space will they give you prior to the death?

Each person’s circumstances and reactions are different. The death of someone close impacts our personal life and relationships in myriad ways, making extra demands on our time and emotional well-being. In response, we can feel depleted at work. But there are ways that you can better manage both anticipatory grief and your workload, so the process is less draining. The following suggestions reflect my recent dealings at work while experiencing anticipatory grief.

  • Prepare your colleagues. Many people won’t know how to respond when you announce the anticipated death of a loved one. Be explicit about what you’d prefer in your interactions to garner the support you need. After my long weekend, I was scheduled to teach an intense three-day leadership class with a few colleagues. I needed to be fully present for the class participants and my fellow course leaders. I explained my mom’s situation to one of my colleagues, Liz, and asked her to inform the others. I also said that it would help me most if no one mentioned the situation during the class or treated me differently than they normally would. Receiving their empathy when I needed to focus on work would likely make me dissolve into a puddle of tears. In a different setting, talking about an impending loss with an empathetic colleague might be both comfortable and helpful.
  • Create a plan B. You won’t know exactly when you’ll be needed at home — whether it is before or after your loss — so create a backup plan for work. How many people you ask for help will depend on how open you want to be about what you’re going through. Perhaps you choose just one trusted colleague or discuss a plan with your boss or you distribute the load by asking smaller favors of multiple coworkers. For the class I was teaching, Liz and I mapped out how she and our colleagues would divide up the session and handle breakout discussions if I had to leave on short notice.
  • Ask for a second set of eyes. There’s a lot on your mind during major life events. Give yourself space — particularly when you might not be performing at your usual high level. Ask a colleague to double check important items in your work. This could prevent a costly mistake, and your teammates will be glad to have tangible ways to support you. In the weeks leading up to my friend’s and my mom’s deaths, I found myself forgetting many things and making mistakes. In one instance, I arrived for lunch with a friend and realized that I hadn’t brought my wallet. On another occasion, I asked a colleague to review terms in an important work proposal before submitting. He found an error that would have cost me $2,000. Mistakes don’t mean we’ve quit caring about our work; it’s normal to experience brain fog during a crisis.
  • Seek support for your loved one. You may want to be with your loved one all the time, but you may also have to attend to needs at work. It’s easy to feel guilty in your personal situation and inefficient at work — an emotional toll that’s hard to sustain over time. Ask friends to stand in for you so you can concentrate on your task. Trusted friends visited my mom, held her hand, and read to her. It was easier for me to tackle pressing work when I knew loving helpers were reading Wordsworth’s “Daffodils” and Marc Anthony’s speech from Julius Caesar to Mom. And being able to give my full attention to work allowed me to complete it more quickly and return to my mother that much faster.
  • Identify permanent no’s. Expecting someone you care about to die brings your priorities into sharp focus. Suddenly, it’s easier to remove yourself from a noisy distribution list or miss that meeting you wondered why you were attending in the first place. As you say “no” in the short term, take this clarifying opportunity to say no permanently to low-impact activities that have become unquestioned habits.

Loss is inevitable in a life well lived. We accrue abundance through our relationships and experiences, but we also inevitably lose some of our treasured people. Creating space to take care of yourself and your obligations in the face of upcoming losses allows you to manifest a different sort of gain in your life: peace of mind, emotional well-being, and acceptance of loss over the long term.

Complete Article HERE!

A Unique and Affecting Memoir Combines Grief and Mushrooms

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Toward the end of Long Litt Woon’s unusual memoir, “The Way Through the Woods,” an old friend of the author chastises her for skipping his wedding to go to a mushroom fair.

Although she was one of the fair’s organizers, Long recognizes that her excuse was flimsy and slightly weird. “It had slowly dawned on me,” she writes, “that I was possibly becoming abnormally fixated on mushrooms.”

Indeed. But the larger question in this moving and unexpectedly funny book is not why Long has become obsessed with mushrooms — we have, too, by this point in the narrative — but how and why her obsession has helped her recover from the death of her husband. She makes an eloquent and persuasive case for an original thesis: that “seemingly unrelated subjects such as mushrooms and mourning can, in fact, be connected.”

Books about bereavement can be unbearably painful, like bereavement itself. Grieving is so personal, so all-consuming, so frightening; it can force you close to the edge of insanity. Immersing yourself in someone else’s anguish can feel like voyeurism, an almost obscene violation.

But Long tells the story of finding hope after despair lightly and artfully, with self-effacement and so much gentle good nature that we forgot how sad she (and we) are. Her daring decision to put mushrooms rather than herself at the center of her story speaks to the sort of person, and the sort of narrator, she is.

An anthropologist originally from Malaysia, Long met her husband, Eiolf, while visiting Oslo on a college exchange program. They lived there happily and harmoniously into their mid-50s. “The Way Through the Woods” begins when everything changed, “the day when Eiolf went to work and didn’t come home.” Long is unmoored by a death that was as instant as it was untimely. What should she do now? Should she even remain in Norway?

At a loss, she enrolls in a course called Mushrooms for Beginners, something she and Eiolf had hoped to do together. She finds herself thrust into a world of zealots for whom “talk of fungi crowds out everything else.” (She makes many “mushroom friends” throughout the book, but often has little sense of their non-mushrooming lives.) She immediately sees the humor in the subject.

The mushroom course sponsor, the Greater Oslo Fungi and Useful Plants Society, “sounded like a sister organization to the Norwegian Women’s Hygiene Association,” she writes. “To be honest, I wasn’t sure what constituted a useful plant.” Is there also a society, she wonders, for useless plants?

But “mushroom outings gave me the push I needed to get out of the house and take part in life,” she writes. She prowls the woods for hours, learning how to spot elusive mushroom colonies and to identify dozens of different varieties of mushrooms — which kinds are rare, which are tasty, which are poisonous. She is invited by seasoned enthusiasts to secret mushroom locations known only to them, spots they guard with the fierce jealousy of a squirrel with a private stash of nuts.

We learn that mushrooms considered poisonous in Finland are in some cases considered perfectly edible in France. We hear about a pioneer of 19th-century Norwegian mycology so gripped by obsession that he changed his last name to “Sopp,” which means “mushroom” in Norwegian.

We travel with Long to New York, where she takes a heady tour through Central Park with the late, legendary mycologist Gary Lincoff. They are happily picking mushrooms when a park ranger asks them what is in their basket. Lincoff tells him, reeling off the varieties in Latin.

“It is my duty to inform you that it is forbidden to pick flowers or plants in Central Park,” the ranger says amiably, bidding good-bye. “There, my job is done!”

Soon Long is so keen that she takes, and passes, the Norwegian Mycological Association’s tough exam, becoming a certified mushroom inspector. These volunteers help residents of Oslo who want to pick mushrooms, and who wish not to poison themselves by bringing home the wrong ones.

Receiving her mushroom diploma, Long feels something like euphoria. “I may have even curtsied as it was handed to me, I was so thrilled,” she says. “I think Eiolf would have been proud of me.”

Seeing Long’s capacity for wonder and even contentment in the midst of her sadness feels like seeing tiny shoots of grass peeking from the ash in a landscape stripped bare by fire. Her memoir, beautifully translated from the Norwegian by Barbara J. Haveland, intersperses the story of her mushroom education with details of her emotional journey, each informing the other. She is a fine anthropologist of both.

She describes moments of emptiness, anhedonia and emotional numbness. The moments creep along, then suddenly disappear into black holes, disregarding the rules of chronology. “Grief grinds slowly,” she writes. “It devours all the time it needs.”

We’re used to descriptions of big, convulsive, operatic heartache, but everyday loss around the death of someone you love — the thousands of little moments that are “divine in their banality” — cuts more sharply. Long thinks wistfully of the delight she and her husband used to take in sharing books. “Reading a book is like taking a walk through unknown country. It hurts to think of all the books and all the walks that Eiolf never read, never took and never got to tell me about.”

She and Eiolf loved to cook together. After he died, Long found herself sitting in front of the TV idly spooning mackerel in tomato sauce from a can, a scene that eventually gives way to a glorious chapter full of lovingly described mushroom recipes. “If it were anatomically possible, I would have said that my heart had been dislocated,” she observes. Seeing its gradual restoration to its proper place helps our hearts, too.

At its center, this book poses a familiar, awful existential question. How do you go on living when the person you loved so much — perhaps the person you loved best in the world — is gone?

Everyone must find her own answer. Long’s is as good as any.

“When forced to use my senses in different ways, I gradually ceased to observe my widowhood from the outside and slowly came to grips with my own life,” she says. “And perhaps this just shows how closely linked my two journeys have been — the involuntary excursion into the labyrinth of grief and the utterly voluntary foray into the field of mushrooms.”

Mushroom lovers, she writes, “believe that where there is life, there are mushrooms as well as hope.”

Complete Article HERE!

How to cope with grief

 ‘Give your child honest answers about death’

By Tanya Sweeney

Experts say confronting grief and being honest about loss is best for children

Between the rough and tumble of early life, we soon find that children are more resilient than we think. Yet when it comes to a hurdle as big as death, our instincts might just be to carry them away from it all and to shield them from the enormity of the loss.

Years ago, this was very much the norm if a young child experienced the death of a loved one. No doubt people’s hearts were very much in the right place, and these actions come from a protective and loving instinct.

Yet experts believe that confronting the situation head on with the unadorned truth is a better start on a child’s grief journey.

Theresa Kavanagh is a support worker at the Limerick-based Children’s Grief Centre, who provide a listening service to children and young adults experiencing the death of a loved one, parental separation or other form of grief.

“It’s quite amazing how parents feel they’re protecting their child when they don’t allow them to participate in rituals like wakes or funerals, but a child has the right to say goodbye to the person they love,” she notes. “Children need, want and deserve the truth. Children are so perceptive. It’s amazing how much they know and how strong they can be,” she says. “I’ve heard of children being told that ‘Mammy is asleep’, while another little girl was told that her granny went on holidays and never came back. The problem is that younger children go into magical thinking and make things up. If they’re sent away in the event of a death, or not talked to properly, they will always blame themselves, even if the death is from something like cancer.

“I remember one young boy’s mother died of an accidental drug overdose, and he said, ‘I thought it happened because I was bold’. That’s why it’s so important to have open conversations, and also to validate how they themselves feel.”

Often, this can be easier said than done for adults who are also forging their own journey of grief and coping with loss. Often, it can be the first time that a parent or guardian finds themselves in that situation, so it’s entirely natural that uncertainty would reign.

“If a parent can express how they feel, it’s important to say ‘it’s sad, but I’m a grown up and I can look after myself’,” notes Kavanagh. “It’s interesting, a lot of parents haven’t dealt with their grief before they come to the centre, and it’s only when they’re here that they realise that. Parents and children seeking help at the same time can really help the healing process.”

Ann D’Arcy is a Senior Social Worker and Bereavement Coordinator at Our Lady’s Hospice and Care Services, Dublin, who has been offering workshops for bereaved children and their guardians for 14 years.

She notes that the grief journey for children is very different to that of adults.

“A child can’t sustain the depths of emotional pain for the same lengths of time,” she explains. “One minute they are talking about death, the next they’re back on their bikes or PlayStation as if nothing happened. But that doesn’t mean they’re not grieving.

“A very little child may listen to this and run off, and a parent might think they either didn’t take it all in, or the conversation is done, but with a young child developmentally, they’ll find it difficult to understand permanency,” explains D’Arcy. “They’ll often keep coming back to ask the same questions over and over again, trying to make sense of it. It’s important to remember you didn’t do it wrong in the first place. They will just need to talk about it over and over again to understand. It’s important to give a child the space, and permission, to grieve however they might like.

“We need to remember that grieving is normal, and most children are going to feel sad, angry and lonely. You might find that many children will express that physically — they’ll be more tired or experience tummy pains or headaches. Some regress to a younger age,” notes D’Arcy.

“The other thing that often happens is that they are terrified of losing their surviving family member. Most of the children I meet will want to ‘protect’ their surviving family members, and often won’t tell them how they really feel for that reason.”

Death really is the ultimate wrong-footer, and for that reason, grieving children often need to be grounded with certainties.

“Children need information on what happened around the death, but also reassurance that their meals will be given to them, school will still be there, and people will still love them,” says D’Arcy.

Offering children some sense of control over the situation offers them a valuable coping skill: “For one child, talking and looking at old photos is really important, for another, it’s too much and they don’t want to have that reminder in every room. It’s about negotiating that,” says D’Arcy. “Give the child a choice on whether they would like to view the body, and how they would like the loss to be acknowledged. Do they want something said in class for instance, or would they rather it wasn’t mentioned? Will they want to participate in Father’s Day?”

When discussing death or loss with children of all ages, the expert advice to do away with euphemisms and explain the situation in clear language.

“It’s always about giving very factual information to a child, and that’s why we recommend using words like ‘dead’ or ‘death’ and to explain what they mean,” observes D’Arcy. “It’s a very abstract concept for a child. Explain to them that when a person dies, they no longer feel anything. They’re no longer thirsty, cold, hungry, in pain, sad. It may look like a person is asleep, but the body stops working and the heart stops working.

“Be very, very concrete. Coming from a faith perspective, some people will believe the soul or spirit has gone to heaven, but just remember that young children will see that as a concrete place, and will probably ask when they can visit, or why the person won’t come back.

“If a child is seeing their loved one’s body, explain beforehand that their body might feel cold, and look a little different than usual,” adds D’Arcy.

Conversations for very young children need to be similarly concrete, though it may take them more time to assimilate the enormity of the situation. “If a child is asking the questions, it’s important to give the honest answer, really,” surmises D’Arcy. “It’s better to have had that conversation from someone they love, rather than hearing it in the school playground.”

Complete Article HERE!

Bereavement doula help grieving families with pregnancy loss

“I couldn’t believe the suffering. We can’t not support these families.”

By Meghan Holohan

When Holly Wilkerson was 21 weeks pregnant with her second child, she went for an appointment to learn her baby’s gender. Instead she heard tragic news: The baby had passed away at 16 weeks. Soon after she went into labor and returned to the hospital to deliver her stillborn baby. She had no idea what would happen. Then Heather Bradley arrived.

“I was very thankful to have her navigating. I had given birth before. This was a very different experience, obviously,” Wilkerson, 32, a high school German teacher from Greensburg, Pennsylvania, told TODAY Parents. “She really helped talk us through the feelings we were feeling, kind of making sense of things.”

Bradley is a bereavement doula, a professional who supports people “through grief and loss” of childbirth. While doulas coach families through pregnancy, birth and the postpartum period, bereavement doulas help families through pregnancy loss. That means they comfort them during the labor and delivery, help them fill out death certificates, assist in making funeral arrangements, help moms when their milk comes in and coach them on how to react when people ask, “What happened to the baby?”

What does a bereavement doula do?

“It is stuff you never think you’ll need to think about,” Bradley, of Pittsburgh Bereavement Doulas, told TODAY Parents.

Bradley had worked as a doula for years, but when a friend suffered a miscarriage she felt stunned by what the grieving mom experienced.

“It was awful. Hearing what other people said to her and how other people abandoned her. I couldn’t believe the suffering,” Bradley said. “We can’t not support these families.”

She started researching bereavement doulas, sometimes called death doulas, and took some online courses and attended conferences. For the past year, she’s been offering her services in the Pittsburgh region.

“The research out there has shown what is important to these families is continuity of care,” she explained. “It is the same person who knows your story and your issues. Having access to resources and options is key.”

Heidi Faith founded the bereavement doula training network Still Birth Day, which she started after she experienced pregnancy loss and grappled with so many difficult challenges. She wondered how she could tell her husband or what it was like to be a mother to a child who did not live. She had worked as a doula for a decade, so she realized she could offer something to families going through the same thing.

“I am here to bridge the gap where birth and death meet. I am here to provide comfort,” the Kansas City, Missouri-based doula told TODAY Parents. A bereavement doula, she said, “is someone who can translate and help them move forward while they’re crumbling.”

Often family or friends of a woman going through pregnancy loss finds Faith and connect with her or another bereavement doula for support for their loved ones. Faith finds that treating the family with dignity and respect helps them mourn and celebrate their child.

“A few generations ago they thought the most prudent thing is to rush the baby out of the birth space and tell the mother just to move on,” she said. “Women in our family tree will tell you, ‘50, 60 years ago I gave birth to my baby and she died and we never talked about it. I wish we would have.’”

Complete Article HERE!

Disenfranchised Grief

When Grief and Grievers Are Unrecognized

by Lisa S. Zoll, LCSW

Grief is disenfranchised when others avoid talking to someone about a painful loss or use a cliché that minimizes that loss. When this happens, the visible evidence of the grief tends to disappear from public sight. Corr (1999) states that whether these types of responses to a loss are careless, unintentional, or a deliberate “restriction of the meaning of grief to its emotional components is an unrecognized form of disenfranchisement of the full grief experience” (p. 9). Essentially, when a loss is minimized, the griever may feel tentative or inhibited about grieving the loss publicly. Doka defines this concept of disenfranchised grief as grief that is not or cannot be openly acknowledged, socially validated, or publicly supported (Doka, 2002a).

There are three primary concepts that serve to disenfranchise someone’s grief: 1) the relationship between the griever and the deceased is not recognized, 2) the death or loss is not recognized, and 3) the griever’s ability to grieve is not recognized (Corr, 1999). This article will address these three concepts through the use of case examples. Loss, in this article, is defined as the disappearance of something cherished, such as a person or possession to which there is an emotional attachment or bond (Zoll & Shiner, 2017).

The Relationship Is Not Recognized

Through the foster system, a couple was attempting to adopt two young girls, ages one and three, who had been living in their home. During the four months of foster placement, the couple had developed a parent-child relationship with the girls. At the custody hearing, the judge awarded custody to a distant relative of the biological mother. For all intents and purposes, the couple had lost the parental relationship with the girls, a loss that felt as significant as losing legally defined “daughters.” The couple observed, for a short time, that although their loss was recognized, it seemed that the significance and depth of loss was not. The couple reported feeling a sense of abandonment by those closest to them. In their experience, “nobody understood, and nobody brought it up, so they could understand.” The response, “At least, they got to be with you for that time” (M. & J. Schwartzman, personal communication, February 11, 2018), seemed to diminish the magnitude of their grief. Ten years later, that loss was still palpable to the couple. Loss, in this case, was related to the significant emotional bond that the couple had formed with the girls.

The Loss Is Not Recognized

Many losses that are stigmatized by society as “not worthy” of grief are grieved silently and privately. Death-related losses such as suicide or drug overdoses, either intentional or unintentional, may fall into this “not worthy” category. Non-death related losses may also fall into this category, such as losses related to domestic violence or addiction. Holderness (2018), who recently publicly described the abuse that she suffered at the hands of her ex-husband, says that her ex-husband’s anger and her experience of “being subjected to his degrading tirades for years chipped away” at her independence and sense of self-worth. “I walked away from that relationship a shell of the person I was when I went into it, but it took me a long time to realize the toll that his behavior was taking on me.” Looking back on her experience, Holderness describes a loss of safety and security, a loss of relationship, loss of her independence, and loss of her self-worth. Such multiple losses are frequently associated with domestic violence (Hollinger, 2010)

Significant losses are intrinsic to addiction and to addiction recovery. Addiction is a pervasive and significantly distressing disorder that can consume a person’s life. Long-term addiction to substances or to behaviors can lead to losses that go unrecognized in the form of damage to or termination of relationships, loss of job and/or career, decline in financial status, and deterioration of health. (Mager, 2016).

Acknowledgment of a loss is intrinsic to the recovery process. To maintain sobriety, a person struggling with addiction is often asked to give up many of the people, places, and things that are associated with the active addiction. They are often asked to give up anything that “triggers” the addictive behavior. For example, in the case of alcohol or substance use disorders, related losses might include relationships with friends and family members who are associated with the use of alcohol and could include the prohibition of visiting or frequenting associated venues. Likewise, a job or career that does not support recovery efforts and the maintenance of sobriety may become a casualty and loss. Feelings of loss and subsequent grief occur with each part of one’s current identity that must be given up to achieve and maintain recovery (Mager, 2016).

The Griever Is Not Recognized

When Lynn Shiner’s two children, Jen (age 10) and Dave (age 8), were murdered by her ex-husband who then took his life, Lynn was the obvious griever. Her grief was thrust unwillingly into the media spotlight.

At the time of the murders, Lynn was in a relationship with a man who later became her husband. Her boyfriend’s trauma and grief went essentially unrecognized for, probably, several reasons. First, though Shiner’s boyfriend had a close relationship with the children, he was not their father. Second, from outward appearances, he pushed his own grief aside as he focused on being a caregiver of Shiner and her grief, though he reports he did privately grieve with Shiner. Third, his friends questioned his motives for remaining in the relationship and, on more than one occasion, suggested that he run the other way. In his love for Shiner, he remained committed to the relationship. Members of his support system were incredulous of this attitude and of his decision to stay in the relationship. Though there is no question that he had an emotional bond with Shiner’s children, and that he deeply grieved their loss, publicly, his grief was essentially invisible (P. Shiner, personal communication, January 11, 2017).

Shannon Wood, the best friend of Shiner’s murdered daughter Jen, was not aware, until after the murders, of the violence to which her friend was exposed. Wood describes herself as an indirect victim of the domestic violence in Jen’s home. Wood says that she still remembers the fear that she experienced the first year after Jen’s death, as a 10-year-old. “I didn’t like going into dark rooms by myself, because I feared Jen’s father would be there, or my dad would ‘do’ something, or that somebody would, in some way, hurt me.” The loss that was being felt by this young girl, who was grieving the loss of her best friend, went unrecognized. Wood felt isolated in her loss and believed that no one could fathom how she felt. Her proof was the silence she encountered on the topic of Jen’s death. After the funeral, there was little recognition or acknowledgment that Wood had lost her best friend. Her grief quickly became disenfranchised, her fears invisible to others (S. Wood, personal communication, February 8, 2018). It has been suggested that young children may be incapable of grieving or do not have the need to grieve (Corr, 1999). This example proves otherwise.

Recognizing Unrecognized Grief

Following a loss, an essential element of the healing process is that the loss be recognized and validated. In the cases cited above, the losses were essentially not perceived as legitimate. When treating individuals whose grief has been disenfranchised, “The goal is always the same, to enfranchise the disenfranchised griever” (Doka, 2016, p. 222). Hartwell-Walker (2018) sees the roles of therapists as “providing what an individual’s immediate social world either can’t or won’t” (p. 2). Therapeutically, it is helpful for grief counselors to legitimize and validate a client’s feelings and to assist them in identifying aspects of disenfranchised grief.

One of the aspects of disenfranchised grief to be identified by a client may be the empathic failure of others to understand the client’s experience of emotional pain and the subsequent inability to acknowledge the client’s grief (Doka, 2002b). Other factors associated with disenfranchised grief may include the individual’s own sense of shame and guilt regarding a loss with the perception that their grief is not valid in the eyes of others. Such minimalization can inhibit both the acknowledgment of a person’s own grief and the solicitation of social support from others. On an interpersonal level, others simply may not acknowledge, validate, or offer support for the grievers, as in the case of the failed adoption example above (Doka, 2002b; Hartwell-Walker, 2018). Losses associated with social stigma, such as suicide, a drug overdose, addiction, or abortion, fall into this category.

Recognition and validation of the multifaceted aspects of loss and grief should be sought throughout the therapeutic work to empower those experiencing disenfranchised grief. Beyond identifying factors that contributed to empathic failure of others, interventions might include individual therapy, narrative therapy, support and self-help groups, and the therapeutic use of ritual. It is important that interventions help provide a sense of either individual or shared validation of the experienced loss and that the grief be normalized within a safe and supportive environment.

Therapeutic rituals can include, but are not limited to, planting a tree or flowers in memory of the deceased, donating to a beloved charity of the deceased, visiting the burial site, carrying an object that is a reminder of the deceased (such as a piece of jewelry or other personal possession of the loved one), creating epitaphs or artistic expressions of love and grief, writing letters to the deceased, and/or establishing a Facebook memorial. These rituals help to affirm, either publicly or privately, the legitimacy of the griever’s loss (Doka, 2002b; Herbert, 2011; Winokuer & Harris, 2012).

Finally, social workers working with individuals with disenfranchised grief should remember the acronym LEVELS: Listen, Empathize, Validate, Educate, Legitimize, and Support the individual’s experience of loss.

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Here’s When It’s Time to See Someone About Your Grief

There’s no “right way” to handle this.

By Patia Braithwaite

In 2008 Anne Pinkerton, 46, learned her big brother died during a rock-climbing accident. She was overwhelmed by the suddenness of it all. David, who was 12 years his sister’s senior, was a radiologist with a passion for the outdoors, Pinkerton tells SELF. He died “in the prime of his life while doing some of his most rigorous athletic work,” she says. Pinkerton had never thought of David as anything other than healthy and now she had to make sense of his death.

“It seemed unreal for a long time,” says Pinkerton, who regularly writes about grief. She remembers her persistent thoughts that David would eventually get in touch with her, that his absence couldn’t be permanent. It wasn’t difficult to imagine that he was just away on a trip, she says.

“A lot of that first year was just really trying to process the fact that he was gone,” Pinkerton explains. “It took a long time to come to terms with the fact that I was going to live the rest of my life without my big brother.”

Having had the expectation that she’d grow old with David, Pinkerton’s grief included feelings of sadness, abandonment, and a bit of anger. But there was also the sense that her grief was inappropriate, she says: “Being a sibling and losing a sibling was so unbelievably painful, [but] people were not treating me as though I had experienced something huge.” This isolation “was a big part of what took me back to counseling,” Pinkerton says. “I had thoughts like, ‘Is there something wrong with me? Am I dealing with this inappropriately?’ Because [people were] acting like this shouldn’t be a big deal. And it was the biggest thing that ever happened to me.”

As awful as it feels, grief is a natural human response to losing someone close to you. The intense emotions that come with grief can all be an appropriate part of eventually helping you heal as much as possible. But there are times when grief is even more overwhelming than usual—times when it hinders your life and happiness long-term. But when losing someone has thrown your world off its axis, how can you tell what’s normal and what’s not? Here’s what you need to know about the typical grieving process, the phenomenon of “complicated” grief, and when to see someone like a therapist about your grieving process.

Grief isn’t linear, but it should soften with time.

“Grief doesn’t really go away,” M. Katherine Shear, M.D., director of the Center for Complicated Grief at Columbia University, tells SELF. But most people will eventually get to a point where “the feelings won’t have center stage the way they do in the beginning,” Dr. Shear says.

With that in mind, grief researchers have started to move beyond the Kübler-Ross grief stages—denial, anger, bargaining, depression, and acceptance—to acknowledge what you’re probably feeling after a loss: Grief is chaotic and the stages are often more scrambled than straightforward.

So instead of neatly labeled stages, the Center for Complicated Grief categorizes the typical grief trajectory as having an acute phase and an integrated phase. The acute phase occurs shortly after a loved one’s death and includes the intense feelings we often associate with grieving, like sadness, yearning, guilt, anger, anxiety, numbness, wishful thinking, and more.

During the acute phase of grief, activities like eating, walking your dog, smiling, and getting out of bed probably seem like major victories. They are. “Even if you’re just going through the motions at first, doing your routines and daily responsibilities is a good sign” that you might be working through your grief, Rachel L. Goldman, Ph.D., clinical professor of psychiatry at NYU Langone Health, tells SELF.

The integrated grief phase is a more long-lasting form of grief where you acknowledge the loss, but it now has a place in your life without taking over it. You’ll still have bad days, but in most cases you’ll start to have more OK days and even happy ones too.

“What softens grief is making progress in adapting to the loss,” Dr. Shear says. “And adapting to all the changes that come along with the loss of someone close.”

The general expectation is that during the first year of grief, you will start to move away from the acute phase toward the integrated one.

“You’re going to feel sad, but ideally you’re also starting to regain your own sense of well-being,” Dr. Shear says. “And hopefully you’re starting to see pathways forward in your life that have some potential for joy, satisfaction, and continued purpose.”

But if the pain you’re feeling doesn’t seem to be softening as time passes or if it’s even getting deeper, you may be dealing with complicated grief, which is a diagnosable medical condition that can often be treated.

Complicated grief happens when these emotions don’t subside as expected with time.

This essentially means that your acute grief is sticking around longer than it should, preventing you from learning how to live while managing your loss.

A lot is still unknown about this condition. For starters, medical professionals don’t have a clear consensus on exactly when grief becomes complicated, the Mayo Clinic says.

In the Diagnostic and Statistical Manual of Mental Disorders (DSM-5), a resource that U.S. health care professionals use to diagnose mental health issues, this condition is known as persistent complex bereavement disorder (PCBD). The DSM-5 defines it as a “severe and persistent grief and mourning reaction” that must still be around at least 12 months post-loss in order to be diagnosed.

However, the International Classification of Diseases (ICD-11), the diagnostic resource released by the World Health Organization, calls this phenomenon prolonged grief disorder, defining it as a “persistent and pervasive grief response characterized by a longing for the deceased or persistent preoccupation with the deceased accompanied by intense emotional pain.” Experiencing this kind of grief at least six months after the loss is a core ICD diagnostic criterion for prolonged grief disorder.

Though there’s some debate about how long someone needs to grieve in order for it to be considered complicated, one thing’s clear: If the grief is so severe it’s negatively impacting a person’s life in a major way, it may be more serious than typical grief. The DSM-5 lists symptoms like feeling as though life is meaningless after the loss, a preoccupation with the person who’s gone and the circumstances of their death, and loneliness. The ICD lists symptoms such as feeling you’ve lost a part of yourself and an inability to feel happy. (There’s a lot of symptom overlap between the two lists of diagnostic criteria.)

A lot of these symptoms are actually normal early in the grieving process. For instance an inability to stop counterfactual thinking—concocting alternatives to events that have already happened—is to be expected at first, Dr. Shear says. It’s natural to think, If only I had done this one thing differently, maybe the person I love would still be here. But if those thoughts become the focus of your thinking for a prolonged period after the loss, it could prevent you from integrating grief into life. Excessive avoidance is another example. It’s reasonable to avoid specific places or things that remind you of your loss early on in the grief process, but if it persists it might be a sign that you could benefit from support to help you move forward, Dr. Shear explains.

There aren’t firm numbers for how many people are impacted by complicated grief. The Center for Complicated Grief estimates that around 10 to 15 percent of people who have suffered a loss may be dealing with this condition. No one knows why a minority of people develop complicated grief while others don’t, Dr. Shear says. But there are risk factors that might make you more prone to it, like a history of depression, separation anxiety, or post-traumatic stress disorder, or a personal history of abuse or neglect, according to the Mayo Clinic. If the person you lost died unexpectedly or violently, that’s another risk factor, as are circumstances such as the death of a child, social isolation, and life stressors like money troubles.

To make things more confusing, complicated grief is often misdiagnosed as depression, according to the Center for Complicated Grief. One way to tell the difference is that complicated grief is characterized by yearning and overwhelming thoughts about the person you lost, while depression can feel like more of a sadness or loss of pleasure that blankets your life but isn’t centered so much on a death. Of course it’s possible to have both complicated grief and depression too.

Consider seeking mental health support if your grief feels all-consuming.

Pinkerton says that she was comfortable getting a therapist after her brother’s death because she’d been in therapy before. But if you haven’t been in therapy, it can be hard to pinpoint whether or not you could benefit from some extra support.

No matter where you think you might be on the grief continuum, Goldman suggests seeking support from someone like a doctor or mental health professional when you feel you have “reached the end of your personal coping mechanisms.”

Instead of focusing solely on the timeline, try to examine the intensity of your grief. It doesn’t matter how long it’s been. If your grief feels utterly overwhelming, that’s reason enough to reach out. You don’t need to think you might have complicated grief in order to deserve help.

“I don’t think it’s ever too soon to see a provider,” Goldman says. “Worst-case scenario, a therapist says, ‘This is a completely normal reaction. I would also feel sad. I would also cry.’ And that is therapeutic and powerful for someone to hear.”

If you do see a therapist within the first few months of your loss, they might tell you that you have an adjustment disorder, which can occur when you’re having trouble coping with a big life transition, according to the Mayo Clinic.

“An adjustment disorder is a way we classify anybody that has had a major stressor in their life and has [mental health-related] symptoms following that stressor,” Goldman says.

The death of someone close to you is a huge stressor that naturally can come with intense emotions and pretty significant life changes (like relocation, financial issues, and other logistical stuff). These changes and the loss itself might trigger some disorienting feelings, but it doesn’t necessarily mean that there is anything wrong with how you’re handling it all.

The important thing to note here is that adjustment disorders are typically short-term reactions to stressful life events. In most cases, talking through your experience with a therapist should help the adjustment disorder symptoms subside within six months, Goldman says. If your symptoms don’t subside and it turns out you may have complicated grief, you’ve already laid some groundwork with someone who may be able to help.

Experts typically treat complicated grief with something that’s (unsurprisingly) called complicated grief therapy, according to the Mayo Clinic. It involves techniques like retelling the circumstances of your loved one’s death in a guided format that might help you become less triggered by those thoughts or images. Ideally this treatment will help you explore your feelings in a way that allows you to better integrate your grief into your life. And if you have other health conditions such as depression you could benefit from talk therapy for that, along with medications like antidepressants, the Mayo Clinic says.

If you don’t feel compelled to see someone like a doctor or mental health professional right now, that’s OK. But support might be available through other avenues too, like the friends and family who might be desperate to help you or support groups for people who can relate.

“One of the most important things is to feel like someone else has actually been through this before and has lived to tell about it,” Pinkerton says. “If you can find other people who have experienced something similar, it’s incredibly empowering to realize that not only are you not an alien, you will survive.”

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