Dating While Dying

I found myself terminally ill and unexpectedly single at 40. I didn’t know which was more terrifying.

By Josie Rubio

One night, as a friend and I were headed to a bar to see someone I had met on a dating app, she asked, “What do you tell these guys?” I pulled up my profile and handed her my phone.

“I have cancer so if you want to hang out, act now!” reads the first line.

“This is great,” she said with a laugh.

A year ago, when my treatment was going poorly and I was getting sicker, my boyfriend of 12 years took a business trip to London, where he “reconnected” with an old friend, a recently separated Pilates instructor. After he booked himself a solo trip to Europe, I overheard him talk about how much fun he had riding around on the back of her motorcycle, holding her hips. He also said he enjoyed walking around by himself without thinking about cancer. And me, apparently.

And that was it. Our relationship was over. I found myself dying and unexpectedly single at 40. I didn’t know which was more terrifying.

My cancer isn’t going away. It’s being treated as a chronic disease. I’m definitely going to die from it, if I don’t get hit by a bus. (Why do people always offer that as an alternative to dying of cancer? “You never know!” they say cheerfully. “You could get hit by a bus tomorrow!”) Doctors buy me time and wellness with treatments, injections and transfusions. I have months of wellness, if I’m lucky. But over all, probably not much time.

The truth is, I was prepared to die instead of date again. From what some people told me, I might as well already be dead as a single woman over 40.

Right after the breakup, I resisted dating. I knew I’d have limited time to spend with people I care about before I got sick again. Why would I want to meet strangers? Still, friends pushed me into it. Sometimes literally. At Octoberfest in Copenhagen, the friend I was visiting declared, “You can’t let your last experience be so awful,” as he steered me into a crowd of Danish men in lederhosen drunkenly dancing and singing to “Time of My Life.”

Back home, my resolve weakened. One night I saw my ex at a concert with the woman he left me for. I didn’t feel sad or jealous, just relieved it was her and not me putting down a credit card at the bar to buy his drinks. It was time to move on.

One friend helped me sign up on a dating app. Another — the person who would become my dating app Sherpa — helped me with my profile and photos. “This guy has a picture of himself with Bill Murray,” I noted as I started swiping for the very first time. “Tinder is full of pictures of Bill Murray,” my friend said sagely.

Since my cancer diagnosis six years ago, I’ve had poison pumped into my veins, tubes threaded into my neck, organs removed, radiation tattoos applied. I’ve shaved my head multiple times. I’ve coughed up pieces of my esophagus. Doctors have given me a spinal tap and rooted around my bone marrow with a needle. But meeting a stranger for a date filled me with dread. “I’d rather be getting a bone marrow biopsy,” I texted my friends before marching out to meet my first date in more than a decade.

But I went. And it was fine. Fun, actually. So I stuck with it and dated some more.

After one great date, I had a crushing realization: I have only the present to offer, not a hopeful future. “You don’t know that,” a friend told me.

“Because I could get hit by a bus tomorrow?” I replied with a weak smile. Within a month I had given myself a black eye, chipped a tooth and skinned my knee. That morning, I had almost stepped off a curb into the path of an oncoming van. The likelihood of meeting my end slipping in the shower actually seemed to be edging out the cancer.

“No,” she replied. “Because you could still be complaining to me about dating when you’re 90.”

As I went, I made dating rules, then broke them. I pay for myself, because letting someone else pay feels too transactional. Plus, after years of paying for myself and my ex, it still seems like a good deal. I don’t eat on first dates, because it’s an ugly scene.

Then, after a meet-up drink, someone asked me to have dinner with him and insisted on paying. I told him, as I devoured a duck breast like I was a medieval king, that I don’t eat lambs because they’re cute, and I don’t eat octopus because they’re smart, but it’s O.K. to eat ducks because I read that they can be necrophiliacs. “If you think about it,” I said, motioning with my fork to my smoked duck in soy-honey jus, “being eaten is really the second worst thing that can happen to them after they die.”

I am great at date conversations. Cancer? Necrophilia? Pick a topic.

What is someone with terminal cancer doing on a dating app? I want what we all want, I guess. I want someone to enjoy spending time with. To tell me I look nice. Only it’s all for a much shorter time. I don’t expect someone to stay with me once I get really sick again. My last relationship made me feel like a burden. In actuality, he was lucky to be with me. I know that now.

I was (and still am) also afraid of something working out and hurting someone else. It feels selfish. But when I like someone, I’m all in. People probably think it’s because of the cancer, but I’ve always been like this, since my very first date at 14 on July 4, 1992, when I sat in a wooded clearing on my first boyfriend’s four-wheeler watching fireworks from nearby SeaWorld.

I had to get home but didn’t want to leave without my first kiss. When we wished on a shooting star, I had the opening I needed. “Do you know what I’ve wanted to do all year?” I said, referring to the crush I’d had on him ever since he entered my freshman English class the first day of ninth grade wearing a Guns ’n’ Roses T-shirt.

“What?” he asked.

“Kiss you,” I said. Then we kissed under the fireworks.

When someone recently texted to see what I wanted to do on our next date, I replied, “I hope this isn’t too forward, but one thing I would like to do is kiss you someplace that isn’t a rainy street corner.” Apparently, I am still the same person I was when I was 14.

Cancer left me with scars, radiation tattoos and a Mediport, but the bad relationship left me with scars I sometimes fail to see. I apologize too profusely, like when I knocked a date’s napkin off the table. “It’s O.K.,” he said, looking at me quizzically. “I’m not going to yell at you.” I realized I had been waiting for him to scold me, like my ex would have.

The guy who made me break some of my rules made me shatter more. I found myself, at his insistence, reluctantly and badly dancing, but laughing the entire time. I’ve held his hand across restaurant tables. I steal kisses from him in public. Sometimes I don’t recognize myself anymore.

I’m so happy and so sad at the same time.

Death isn’t an abstract concept. I live week to week, moment to moment. I live fully, but I have always done that. Since the new treatment, I can even walk around sometimes not thinking about cancer. I agree with my ex: It’s nice. Since that first 1992 date, I just wanted to find someone and feel like that part of my life was settled. But from ages 28 to 40, I just settled. Period.

When my ex kissed me goodbye on the day we broke up, I thought, “This will be the last time a man kisses me.”

It finally feels good to be wrong about something.

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.

By

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!

Students learn to care for dying people

Matthew Cullen, a Union College student volunteers at the Joan Nicole Prince Home, plays cards with resident Bob Humphrey.

by Sara Foss

When I ask Matthew Cullen to share one of his favorite experiences volunteering at the Joan Nicole Prince Home, his answer surprises me.

“Giving my first bed bath,” he says.

When you give a bed bath, “you use a wash cloth to wash a patient’s body,” Cullen explains, adding, “The residents are really grateful for it. One resident told me, ‘Thank you for that. I feel much better.’

This is the third summer that Cullen, a senior at Union College, has spent caring for dying residents at the Joan Nicole Prince Home in Scotia.

His shifts are a mix of mundane tasks aimed at making residents more comfortable and keeping them company. Sometimes that involves chatting at the kitchen table. Sometimes it involves sitting quietly while they rest or sleep.

“A lot of time I’m the only person here,” says Cullen, a native of Guilderland.

Helping terminally ill patients live their final days in peace and comfort might sound like a lot of responsibility for a 21-year-old college student.

But Cullen is more than up to the challenge. The ebullient red-head speaks of his work at the Joan Nicole Prince Home with insight, compassion, even wisdom.

“It can be sad sometimes, but the great majority of the time, it’s happy,” Cullen says. “The patients are sharing their memories and stories with you, and you’re doing the same.

Cullen isn’t the only college student who spends his summers volunteering at the Joan Nicole Prince Home.

He’s enrolled in a unique summer program, called CARE (Community Action Research and Education), that sends college students to volunteer in residential homes for the dying, which provide free, round-the-clock bedside care to terminally ill patients whose families are unable to care for them.

CARE got its start at Union College five years ago, and has steadily evolved since then.

It is now offered in partnership with Skidmore College, and open to students from a handful of other schools, such as Siena College.

This summer there are 13 students volunteering at four different residential homes for the dying: the Joan Nicole Prince Home, Gateway House of Peace in Ballston Spa, Mary’s Haven in Saratoga Springs and Hospeace House in Naples.

“These students are seeing the dying process as it happens,” Carol Weisse, the Union College professor who founded CARE, told me.

But it isn’t all gloom and doom.

Far from it.

“There’s joy in these homes,” Weisse said. “For the students to see that, it makes death less frightening.”

Residential homes for the dying — also known as comfort care homes — serve a noble purpose.

The staff and volunteers at these facilities become a kind of surrogate family for residents, doing “everything a family member would do,” said Weisse, who directs Union’s Pre-Health Professions Program and is herself a longtime hospice volunteer.

Everyone deserves good end-of-life care, and residential homes for the dying ensure that people with little in the way of resources can get it. If anything, we need more of these homes — and more volunteers to keep them running.

CARE was initially geared toward students planning careers in health care.

The idea, Weisse told me, was to give undergraduates who might one day treat dying patients a better sense of how to communicate with and care for those with no hope for recovery. These days, CARE is open to any student with an interest in end-of-life care and a willingness to commit to the research project.

The Joan Nicole Prince Home is bright and cheery, with a back porch, meditation garden, living room and kitchen where executive director Amanda Neveu is baking cookies during my visit with Cullen. The home can accommodate two patients at a time, and each have their own bedroom and bathroom.

Neveu told me that residents — neither of whom are able to speak to me — enjoy speaking with younger people.

“It’s a legacy thing,” she said. “They want to share their stories and have them live on.”

Cullen is planning to go to medical school, as is Nurupa Ramkissoon, a 19-year-old Union College junior and Schenectady High School graduate who has spent her summer volunteering at the Joan Nicole Prince Home through the CARE program.

“It’s definitely been a little sad,” Ramkisson said. “The people who come here are very sweet, and you spend so much time with them. … There’s one resident who likes teaching, and she’s teaching us how to cook. It’s making her feel comfortable, like it’s her home.”

Weisse said her goal is to “cultivate a community of compassionate caregivers,” which sounds like a good goal to me.

At some point, every one of us is going to need a compassionate caregiver, and training students to step into this role could have lasting benefits.

Weisse believes she has created a program that could be implemented at residential homes for the dying all over the country.

“My hope and my dream is that this can spread,” she said.

And with any luck, it will.

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!

Anticipatory grief

Break on through to the other side

By Lisa Cole

I received news about a friend recently — his seizures have now collided into a diagnosis of glioblastoma. A strong and steady man, trustworthy through and through, reliable, and ever-so-devoted is suddenly facing a life-limiting illness. His life has forever changed; and, so has ours.

While grief will have its way with us, through feeling, caring and with gratitude, we can “break on through to the other side.”

Most often we focus on all that the patient must deal with when tragedy strikes. Yet, those of us who care about this person find that with such news, the very nature of our relationship is impacted as well.

A talk with my mother some years ago illustrates how illness changes relationships. I was so touched when she finally asked me how I was doing. For months, we’d been laser-focused on her illnesses. The energy had been going her way; not much coming back around.

I remember first becoming aware of this phenomenon with my dear friend, Trish, at dusk in her living room in Solana Beach, California, the fading backlit light illuminating her. Terminally ill, she also finally asked me how I was. It felt so good to be able to share again as we always had done in the past!

I’m sure it was only because our beloved hospice doctor, Julie, had privately asked me how I was doing. I told her how much I already missed Trish — our deep friendship before her cancer seemed buried. She must’ve dropped a hint. I still cry 18 years later.

It’s no one’s fault. It’s the nature of leave taking — in this case via illness and death. Unbinding and separating from this physical plane demands its own attention. The sick and dying still care; their focus is just elsewhere.

Perhaps it’s a way for us who will remain to begin the adjustment process — while our loved one is still with us. Anticipatory grief.

What can we do during such disruptive and devastating times to help ourselves?

Feel

Feel the confusion, the hurt, the sadness, the shock. Plans smashed to smithereens, the future now unimaginable. Get the support you need to dive deeply into the depths of this darkness; denial and distraction, while offering immediate relief, ultimately only lengthen the process. Grief takes as long as it takes.

Care

Care for ourselves while we care for others. This type of news rocks us to our very core, shocks us and bombards our entire system — psychologically, socially, physically, emotionally, spiritually.

As hard as it might be to do, we must find a way to come up for air, again and again. Take that break, delegate to another, be extra mindful when stepping off curbs and while driving . . .

Gratitude

Gratitude in such circumstances — how? We can at least rally to remember to be grateful for the present, right here, right now. For what we are becoming and being called to do, perhaps in ways we could never have conceived of before.

Carlos Castaneda recommends, “When you need an answer, look over your left shoulder and ask your death.” BJ Miller, palliative care physician extraordinaire and patient himself, in a three-minute PBS brief, observes, “In a way, it’s harder to accept the death of another person than accept your own, especially when you love that person.”

Let’s live our lives alongside anticipatory grief and maximize love, however we can. By feeling our feelings, caring for ourselves and embracing gratitude, we can be of true value.

I miss my friend already.
 

 

Complete Article HERE!