Washing My Boy’s Body

When a hospice counselor is called to the bedside of a child who has just died, he leads the parents through a Buddhist ritual for cleaning the body. In the process, he guides them through the fires of grief, which burn away everything but love.

Misery, 1897. Kathe Kollowitz

By Frank Ostaseski

One day, in the middle of writing a foundation grant report, I got a call from a man I didn’t know. He explained that he was the father of a 7-year-old boy who had been very ill with cancer. Some people had told him that I might be able to help him out.

I said certainly, I would be willing to help the family through their grieving process. I made some suggestions about how I might be able to support when the time was right.

The man paused. It was clear that I didn’t understand yet what was happening. He practically whispered, “No, Jamie died a half hour ago. We’d like to keep our boy at home in his bed for a little while. Can you come over now?”

Suddenly, the situation wasn’t hypothetical; it was real and staring me in the face. I had never done anything like this before. Sure, I had sat at the bedsides of people who were dying, but I had not attended the death of a young child with two grieving parents in unimaginable pain. I honestly had no idea what to do, so I let my fear and confusion arise. How could I possibly know in advance what was needed?

I arrived at the house a short while later, where the dispirited parents greeted me. They showed me to the boy’s room. Walking in, I followed my natural inclination: I went over to Jamie’s bed, leaned down, and kissed him on the forehead to say hello. The parents broke into tears, because while they had cared for him with great love and attention, nobody had touched the boy since he had died. It wasn’t their fear of his corpse that kept them away; it was their fear of the grief that touching him might unleash.

I suggested that the parents begin washing the boy’s body— something we often did at Zen Hospice Project. Bathing the dead is an ancient ritual that crosses cultures and religions. Humans have been doing it for millennia. It demonstrates our respect for those who have passed, and it is an act that helps loved ones come to terms with the reality of their loss. I felt my role in this ritual was simple: to act with minimal interference and to bear witness.

The parents gathered sage, rosemary, lavender, and sweet rose petals from their garden. They moved very slowly as they put the herbs in warm water, then collected towels and washcloths. After a few moments of silence, the mother and father began to wash their little boy. They started at the back of Jamie’s head and then moved down his back. Sometimes they would stop and tell one another a story about their son. At other times, it all became too much for the father. He would go stare out the window to gather himself. The grief filling the room felt enormous, like an entire ocean crashing upon a single shore.

The mother examined and lovingly cared for each little scratch or bruise on her son’s body. When she got to Jamie’s toes, she counted them, as she had done on the day he was born. It was both gut-wrenching and extraordinarily beautiful to watch.

From time to time, she would look over at me as I sat quietly in the corner of the room, a beseeching question filling her eyes: “Will I be able to survive? Can I do this? Can any mother live through such loss?” I would nod in encouragement for her to continue at her own pace and hand her another washcloth, trusting the process. I felt confident that she would find healing by allowing herself to be in the midst of her suffering.

It took hours for the parents to wash their son. When the mother finally got to the face of her child, which she had saved for last, she embraced him with incredible tenderness, her eyes pure reflections of her love and sorrow. She had not only turned toward her suffering; she had entered into it completely. As she did, the fierce fire of her love began to melt the contraction of fear around her heart. It was such an intimate moment. There was no separation between mother and child. Perhaps it was like his birth, when they had the experience of being psychologically one.

After the bathing ritual was complete, the parents dressed Jamie in his favorite Mickey Mouse pajamas. His brothers and sister came into the room, making a mobile out of the model planes and other flying objects he had collected, and they hung it over his bed.

Each one of them had faced unbelievable pain. There was no more pretense or denial. They had been able to find some healing in each other’s care and perhaps in opening to the essential truth that death is an integral, natural part of life.

Can you imagine yourself living through what these parents did? “No,” many of you will say, “I cannot.” Losing a child is most people’s worst nightmare. I couldn’t endure it. I couldn’t bear it, you may think. But the hard truth is, terrible things happen in life that we can’t control, and somehow we do bear them. We bear witness to them. When we do so with the fullness of our bodies, minds, and hearts, often a loving action emerges.

And sometimes they act with enormous compassion toward others who have suffered similarly or who may yet in times to come.

One of the most stunning images of this that I can recall came after the major earthquake and tsunami disabled the Fukushima nuclear power plant in Japan. A photo in the newspaper revealed a dozen elderly Japanese men gathered humbly, lunch baskets in hand, standing in a line outside the plant’s gates. The reporter explained that they were offering to take the place of younger workers inside who were attempting to contain the radiation-contaminated plant. In total, more than five hundred seniors volunteered.

One of the group’s organizers said, “My generation, the old generation, promoted the nuclear plants. If we don’t take responsibility, who will? When we were younger, we never thought of death. But death becomes familiar as we get older. We have a feeling that death is waiting for us. This doesn’t mean I want to die. But we become less afraid of death as we get older.”

Suffering is our common ground. Trying to evade suffering by pretending that things are solid and permanent may give us a temporary sense of control. But this is a painful illusion, because life’s conditions are fleeting and impermanent.

We can make a different choice. We can interrupt our habits of resistance that harden us and leave us resentful and afraid. We can soften around our aversion.

We can see the way things actually are and act accordingly, with wise discernment and love.

The Thai meditation master Ajahn Chah once motioned to a glass at his side. “Do you see this glass?” he asked. “I love this glass. It holds the water admirably. When the sun shines on it, it reflects the light beautifully. When I tap it, it has a lovely ring. Yet for me, this glass is already broken. When the wind knocks it over or my elbow knocks it off the shelf and it falls to the ground and shatters, I say, ‘Of course.’ But when I understand that this glass is already broken, every minute with it is precious.”

After being with Jamie’s parents as they bathed their son, I returned home, and I held my own child very close. Gabe was also 7 years old at the time. I saw clearly how precious he is to me, what a joy he is to have in my life. While I felt devastated by what I had witnessed, I also was able to appreciate the beauty in it.

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.

Complete Article HERE!

How to avoid regret

What a doctor wishes people knew about living, dying well

By A. Pawlowski

Here’s what really matters at the end of life and how to avoid the biggest regrets.

Life is precious because it ends one day, but death is not the enemy. The enemy is a wasted life.

It’s a message Dr. BJ Miller, a hospice and palliative care specialist in San Francisco, wants people to remember as they come to terms with their mortality. Miller’s own brush with death as a college student left him a triple amputee and an advocate for a dignified end of life.

“There’s no guarantee for tomorrow, ever,” Miller told TODAY.

“Watching my patients die helps me think about what’s important to me in my life. So when it’s my time, hopefully I’ll have fewer regrets and, along the way, I hope to have a more meaningful life thanks to their lessons.”

Miller, co-author of the new book, “A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death,” shared his findings on how to live and die well:

Avoid common and painful regrets at the end of life

Miller: There’s usually regret about having been unkind and selfish. It’s shame around having ever been a jerk to anybody, including to oneself.

One of the things dying teaches you is life goes on outside of you, too. You are a grain of sand among a gazillion grains of sand and the sooner you can delight in life outside of yourself, the better you’ll be able to handle your own death and the kinder, more forgiving you’ll be.

Life is just hard and there’s only so much we can get done in it. Forgiveness ends up being a huge theme. If you find yourself in a petty argument that kept you from re-establishing contact with someone you once loved, those get revealed to be practically almost silly at the end of life and people often regret losing contact.

Participate in your life and your dying

Miller: This is your life. Sometimes patients tell me they got robbed or that this is a huge detour or some anomaly in their life. The reminder is: No, this is your life — this is it. And because time is precious, if you don’t engage with your life on a real level, you are squandering your time.

Be an active participant in your own life in every way, including your illness and your dying, because those are parts of your life — your life while you have it. You don’t need to control everything, just participate.

Remember what people at the end of life care about most

Miller: If someone is lucky enough to have a family or a group of friends who are nearby, one thing a dying person really wants to know is that their loved ones are going to be OK. That they’re going to keep living, keep trying and going to try to love themselves and the world. That’s a really powerful thing.

So as a loved one, one of the kindest things you can do for someone who is dying is to let them know you’re going to take care of yourself. That’s not a selfish thing; that’s something the dying person will often really long to hear.

Take comfort that many people have accepted the end

Miller: In most cases I’ve been involved with, by the time death rolls around, the dying person is often really done with this body, done with this life. And whether by force or by choice, acceptance often does come because the fact of dying becomes just so obvious, it’s just so clearly coming.

Dying is often harder in some ways on the people around the dying person — harder on the people who have to keep living.

Clean out the skeletons in your closet before the end

Miller: There’s a hygiene to the process of dying. You go through life and accumulate all this stuff and all that has to go away when you die. You can leave all this emotional and physical residue of stuff, or you can clean it up and by doing so, leave less of a mess for people who are going to live on.

It’s a cleaner grief, in a way, not complicated by finding old letters with secrets in them that can be a source of torture. If you clean up your life on the way out, it can feel wonderful, it can feel very true and it can be an extremely kind gift.

Keep hope going

Miller: I honestly believe that we as a species will do better if we come to terms with our mortality earlier in life. Get used to exercising hope within the framework of life being short and precious.

If my patients come to me and are losing hope, I’ll say “OK, let’s come to terms with the hope that’s being lost. Let’s grieve that, but now let’s find what we still can hope for.”

As long as you have another breath in you, you can hope for something.

As long as you have another breath in you, you can hope for something: Peace, comfort, the well-being of people you love. It’s always a matter of framing your hope.

Simple pleasures, rather than grand moments, are appreciated at the end of life

Miller: It may be simply going outside and feeling the sun on your skin. A shower can be magical, sunlight can be magical. Just delighting in the cool breeze on your face or the sound of laughter. Very basic primal stuff.

Think about what might happen after death

Miller: If you’re around folks who are taking their final breaths, you can see life going out of somebody. You can tell the body is just a shell, something is gone now. Where does that life go? Is there a soul? Is there a spirit?

I find a joy in not knowing. I know dying, but I don’t know death. My compromise is to embrace the mystery of it all.

Complete Article HERE!

How Attending A Death Cafe Helped Me Heal After My Grandmother’s Death

I found myself opening up to strangers about death and finding a sense of comfort in the process.


On the last day of my grandmother’s life six years ago in fall 2014, I hugged her goodbye after an afternoon at my grandparents’ home in South Florida and expected to see her for lunch the following day. However, I woke up the next morning to the news that my grandmother had died suddenly in her sleep. Instead of meeting up for lunch, my family called to make funeral arrangements. I rescheduled my flight and figured out bereavement days with my job at the time. Because I was on vacation, I thankfully had time to spend with my grandmother during her last unexpected days. The shock from finding out she had died lasted through the week and well beyond her funeral.

After her death, I flew back to New York City to return to what remained of my old life. I’d wanted to leave everything I knew and loved behind and embark on an adventure to a place where I knew no one and recognized nothing. In winter 2015 I’d finally had enough courage and money saved up to visit Iceland on a solo trip for my grandmother’s belated deathiversary. I didn’t expect to find a group of Americans and road trip around the southern coast of Iceland and fall in love with traveling alone, a new part of my life my grandmother will never know.

Every year since my grandmother’s death, without fail, I panic around her deathiversary. How could I commemorate her and the impact she had on my life? In the years since Iceland, I’ve talked with family, went to yoga and stayed low-key. In 2018, four years after she died, I thought I’d go on another solo trip because I wasn’t working and had the time to travel.

However, instead of traveling, I did something different and more close to home. I attended a Death Cafe, where strangers gathered together to talk about death in a supportive environment, at a cemetery in Brooklyn on a cold autumn weeknight. I was intrigued about going to a cemetery where the topic of conversation revolved around death. It wasn’t like death was a hot topic of conversation for small talk, so I didn’t really have the opportunity to bring up death on a whim to friends and family, specifically my grandmother’s death, which happened years ago. I wasn’t sure what to expect or how much I would even talk about such an intimate part of my life with people I didn’t know. Once inside the crematory’s chapel, I noticed a small group of people gathered around trays of cookies and water bottles. The director introduced herself and the backstory of the Death Cafe and then separated us into smaller groups.

My group chose a private back room with urns lining the walls. We pulled our chairs together in a circle and introduced ourselves. The conversation started with why we were there and why we decided to attend a Death Cafe and then expanded to religion, stories of loved ones and friends and their passing and then to the beyond: What happens after we die? Is it good that we don’t know what happens? What would happen if we did? One girl asked how grief changes over time, and how grief changes people. We sat in reflective silence and I thought about the week after my grandmother died when I needed to be around only close friends and family. All of my senses had been muted. I lived life that week in quiet contemplation surrounded by familiarity, the exact opposite experience I was having at the Death Cafe: alone and surrounded by strangers.

After we rejoined the main group, the organizer shared two poems about death with us before concluding the Death Cafe. I felt a sense of peace at having talked about my grandmother to a group of strangers and keeping my memory of her alive. After my grandmother’s death, I was so angry at how she died. The director spoke of a good death and what that means, and my mom, after my grandmother died, had also mentioned that it was a good death. I’ve realized I was upset at the way my grandmother passed and, in a way, of our unfinished conversation. Never saying goodbye and never having that final lunch together.

In the years since my grandmother’s death, I needed to confront my ideas about life, death and everything in between and beyond. I needed the space to talk to people who hadn’t moved on because they didn’t have a starting point to move on from. I found myself opening up to these people and becoming more intimate the further our conversations progressed. After all, how do we talk about death when death is such a taboo topic to talk about?

My grandmother’s presence is still here, in the jewelry and pictures and memories left behind. Attending a Death Cafe provided a space of comfort and allowed me to talk openly and freely about my thoughts and feelings to strangers, and since then, family and friends, about all aspects of death in an open manner. My grandmother’s deathiversary, I’ve come to realize after leaving the Death Cafe, is another day that comes and goes with the passing of time. While my grandmother’s death came as a shock, the ending of her life came, as my mom said, as a mercy to her. A good death to a good person, and these realizations came from open conversations about death.

Complete Article HERE!

Kathy Brandt, A Hospice Expert Who Invited The World Into Her Own Last Days With Cancer, Dies

In January, Kathy Brandt (right) was diagnosed with stage 3 ovarian clear cell carcinoma and learned she had mere months to live. She is pursuing aggressive palliative care, forgoing treatments such as chemotherapy or radiation.

by JoNel Aleccia

Kathy Brandt, a hospice industry leader who turned her own terminal cancer diagnosis into a public conversation about choices at the end of life, died Aug. 4. She was 54.

Brandt’s death was announced on social media by her wife and partner of 18 years, Kimberly Acquaviva, 47, a professor of nursing and author of a book about hospice care for LGBTQ patients and families.

“I wanted all of you to know that Kathy had a peaceful death and your love and support is what made that possible,” Acquaviva wrote in comments posted to Facebook. “Our family has felt your love and we can’t begin to tell you how much it’s meant to us.”

Brandt died at the Charlottesville, Va., home she shared with her wife, their 19-year-old son, Greyson Acquaviva, and their dogs, Dizzy and Mitzi. She was diagnosed in January with stage 3 ovarian clear cell carcinoma, a rare and aggressive cancer.

For the past several months, Brandt and Acquaviva chronicled the day-to-day drama of dying in a series of frank, intimate posts on Facebook and Twitter aimed at demystifying the process and empowering other patients.

After researching her disease, which has a median prognosis of less than 13 months and often fails to respond to chemotherapy, Brandt refused drug treatment, declining what she regarded as “futile” medicine. Instead, she chose aggressive palliative care to manage her symptoms, to the dismay of some friends and family — and even her oncologist.

“If it’s not going to save my life, then why would I go through trying to get an extra month, when that month leading up to it would be terrible?” Brandt told Kaiser Health News in April.

The couple’s posts were followed by hundreds of well-wishers who donated more than $80,000 to help defray living expenses and medical costs. The essays and tweets were an unusually intimate window into the physical, emotional and psychological process of dying.

In April, Brandt described herself as a “dead woman walking” on the sidewalks of Washington, D.C., where they lived until June.

“It’s surreal trying to go about a ‘normal’ life when you know you aren’t going to be around in a few months,” she wrote.

During the last weeks of Brandt’s illness, Acquaviva tweeted about her partner’s bowels, posted photos of her sleeping and shared that Brandt was distressed about what would happen to her and to her family when she died. The frank posts prompted concern from people who asked whether Brandt had consented to have her death live-tweeted for the world. Acquaviva replied:

“My wife @Kathy_Brandt is a hospice and palliative care professional, as am I. She decided early on that she wanted us to share her dying process — all of it — publicly so that she could keep educating people about death and dying until her last breath.”

A well-known hospice industry leader and consultant, Brandt spent three decades in the field and was most recently tapped to write and edit the latest version of clinical guidelines for quality palliative care.

The willingness of Brandt and Acquaviva to share an unflinching account of terminal cancer drew praise from fellow hospice and palliative care experts, said Jon Radulovic, a spokesman for the National Hospice and Palliative Care Organization and their longtime friend.

“As she did throughout her professional career, Kathy has continued to teach the field about compassionate care and patient self-determination,” he wrote in an email before her death.

Elena Prendergast, an assistant professor of nursing at Augusta University in Georgia, wrote that she was moved by their experience.

“I have gone through this with family and with patients, but somehow you both have found a way. With your humor and raw transparency, you both make me feel like I am learning about this process for the first time,” Prendergast tweeted last month.

Brandt remained passionate about encouraging patients to consider the full range of choices when confronting terminal illness.

“If you’re ever diagnosed with a disease that will ultimately kill you no matter what you do, think through what you want the rest of your life to look like,” she wrote in a July 11 email. “Then seek out care that will help you make that version a reality.”

Acquaviva said they had worried that Brandt would not receive the care they’d hoped for in a hospice setting — despite their long efforts to advocate for better conditions for LGBTQ people.

In a post on their gofundme page, Acquaviva urged: “Do whatever you can to ensure that ALL LGBTQ+ people — not just those who know who to call or what to ask for — have access to hospice care provided by professionals who will treat them with dignity, respect, and clinical competence.”

Brandt asked that her obituary appear in The New York Times. It is scheduled to run next weekend, Acquaviva said, and it includes a final request that nods to the activism that characterized Brandt’s work on behalf of LGBTQ people and others who need end-of-life care.

“From the time that Kathy was diagnosed with clear cell ovarian cancer six months ago, she was clear with her family that the cause of death should be listed as the Trump Presidency in her obituary. In lieu of flowers, the family asks that donations be sent to whichever candidate secures the Democratic nomination, even if you really wish someone better were running.”

A memorial for Brandt will be held at 2 p.m. Oct. 26 at Friends Meeting of Washington, 2111 Florida Ave. NW, Washington, D.C. 20008.

Complete Article HERE!

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.”

Complete Article HERE!

How to Confront, Prepare for, and Talk With Loved Ones About Death

By Elizabeth Kiefer

The average life expectancy in the United States is now 78.6 years old, according to the most recent data available from the Center for Disease Control (CDC). That’s almost two times what it was a century ago, when it was just 39.

While some might believe we’re on a path toward immortality, at least for now, death remains the one certain rite of passage that arrives for everyone eventually, and Dr. B.J. Miller believes a reckoning is in order.

“It’s high time to review the very common, boring truth that we’re all going to die,” says Miller, a hospice and palliative care physician whose TED Talk, “What Really Matters at the End of Life?” has been viewed more than one million times. The twist: More open conversations about death and dying may in fact help us all get more meaning out of life.

That’s one takeaway from Miller’s new book, A Beginner’s Guide to the End: Practical Advice for Living Life and Facing Death, co-written with Shoshana Berger. Part manual for practical stuff (like how to deal with the mountain of paperwork when someone passes) and more heart-centric subjects (like personal legacy and grieving for loved ones), the book is intended as a resource for anyone who will experience its subject matter, aka all of us. Prevention spoke with him about why talking about death talk is on the rise in the wider culture—and why it’s something to start discussing sooner than later.

We’re about to be the oldest, frailest population ever.

Americans have reached a pivotal population point. “We are about to be, in actual terms and relative terms, the oldest, frailest population ever,” says Miller. “Everyone’s going to be living with chronic illness, everyone’s going to be dying from chronic illness, in numbers we’ve never seen before.” Mass migration into retirement centers and care facilities isn’t the solution—but a more open, pragmatic dialog about quality of life and personal desires could be, Miller believes.

So, it’s time to develop a “relationship” with death.

There’s a reason talking to a sick loved one or sitting down to write a condolence letter can be so paralyzing.

“We don’t have the right language, or we worry we’ll say something at the wrong time and scare the person we’re talking to,” Miller says. His solution: “Think about it like a series of conversations, not a long-time talk.”

Discussing death in the abstract with someone when their health is good can also help you understand what they may want, and need, down the line; furthermore, it can empower you to articulate those things for yourself. Will those kinds of talks potentially make you anxious? Of course. But the aim is normalization over time—and that comes with a silver lining. “There’s a secret in the hospice world: Most people who do this kind of work and are around this subject a lot will probably tell you that their lives are better for it,” says Miller.

Listen to your loved ones.

Miller has observed that patients know more about what’s going on with their health than anyone else does—or that they may be letting on. A person might hesitate to bring up their thoughts about dying because it sounds like negative thinking. “The patient themselves is languishing, not knowing how to talk about it, or they don’t want to hurt their family’s feelings,” Miller says.

His advice is to “keep an eye out. The moment dad says, ‘I’m not sure about this treatment,’ or [mom] starts talking a lot about God,” give them the opportunity to follow that thread. You can come at the conversation from a philosophical or spiritual angle, focusing on beliefs or fears, but the point is to listen and hear them out. “When they crack the window, dare to enter it.”

It’s okay—actually, essential—to talk about costs.

Miller has seen caregivers lose their jobs, drain their bank accounts, and undermine the financial stability of their own families. “It’s as though bankrupting yourself for a loved one is the currency to show how much you care, even though everyone in the mix knows the person is going to be dying,” he says. But while you can’t place a monetary value on a life, it’s okay to keep money in the conversation. “Invite this variable into the mix in a conversation with your doctor,” says Miller. “It’s not just the medication or the pacemaker. It’s the cost of living with this thing.”

Furthermore, he adds: “Our healthcare system is wired to extend bodily life at all costs, and as our technologies have improved you can prop up a body practically indefinitely,” Miller says. “As patients—as people—you have to upend the medical system. You have to disrupt it and say ‘no thanks.’ Otherwise you’ll land in ICUs with tubes in every orifice and your family has got to decide how to schedule unplugging you.”

Ask yourself: Can I afford to die?

“Our commercial world, our health and benefits—all of it shows this huge design flaw: Dying is not baked into the plan,” says Miller. “We tried to erase it and it can’t be erased.” The result: a framework, from retirement saving plans to health insurance programs, that don’t include the costs associated with death in the picture. Which means: “You need to save more than you think you do—sock away money.”

Bear in mind what’s covered, too. An experimental treatment could be entirely out of pocket, while hospice is highly subsidized. At the end of the day: “It’s about harm reduction. You’ve got two shitty options. But a less shitty option is better, and that could make an important difference.”

Think out of the box about legacy.

“Selfish people do not tend to die happy because they can’t see the world outside themselves,” Miller says. Learning to do that—to care about the world beyond your presence in it—can help us all become kinder people, but it can also help frame thoughts about what you want to leave behind.

Miller is referring to legacy, which might be the best shot we get at immortality. But while we tend to immediately jump to monetary donations, it can be any mark on the world you’ve left behind. Miller tells a story about a man who used to sit out on his front porch and wave at everyone who went by; when he passed, “the whole neighborhood changed, just because that guy wasn’t out there waving.” The bottom line: “You’re going to affect people, no matter what you do.” So try to leave behind something they will remember with a smile.

Complete Article HERE!