What do we feel when a loved one is in the very last stage of their lives? What do people who are dying feel when they realize that their time here is nearly over? That process – emotional grief is what we refer to as anticipatory grief. It is the anticipation and grief reaction to understanding that someone or yourself are about to die. Not specifically in the next few moments, but in the months to come. In this post, we discuss anticipatory grief and the grieving process.
What is Anticipatory Grief?
Anticipatory grief is the emotional response to the pending death of a loved one. It is a very powerful form of grief and occurs both in the loved ones of someone who has a terminal illness and in the person who is suffering that illness.
This is a response to the realization that that person or yourself is going to die and that the hope of being cured has diminished. Anticipatory grief is not always about the actual loss of life. It can accompany a major change in peoples lives such as having to have a limb amputated or when a woman must have a mastectomy and feels that her femininity is dying.
What Are the Signs and Symptoms of Anticipatory Grief?
There are five stages of grief and those include:
Denial – Sometimes when faced with death, we deny that the situation is as serious as it is. We cannot accept that death is a possibility or that someone who is dying will eventually die. Instead, we might push them to try harder or resent them silently for not trying harder or resent those around them for not trying harder. “If only” statements are common. If only, I had done more… If only I had taken the time… If only I had talked to the doctor…
Anger – Anger can be uncontrollable and rage-like. It can be directed at the person who is dying or at the people caring for that person – doctor, caregivers, etc. The response is after an accusation and can be violent – physical or emotional – outbursts.
Bargaining – There is the thought that you can make a deal in exchange for something more. ” I can give you more money if you give me better medication – strong chemo, etc. The idea of death is not solidified at this point. There is still the desperate clinging to hope for things that have not yet been identified or discovered – A new drug, a new procedure, a new chance.
Depression – We understand now and the regrets of what we have said, the time we have wasted, the little things that mean nothing are now a weight that pulls us downwards. For those who are about to lose a loved one, this depression may cause us to not want to see the person, or to take the blame for their loss upon ourselves. These are darker emotions.
and Acceptance – We have accepted the fact that nobody is to blame, that there is nothing left to bargain for, and that despite our sadness we or our loved one is going to die. It is a calming of the angst that we have felt. It is often a recognizable and reconciliation period we discuss forgiveness or give permission to someone we love so that they can die. It is about dignity and hope and while sad, is an uplifting from the depressed period through which we have passed. It is a coming to terms with death and the loss and sometimes it is a deeper understanding of what death is – a part of life.
Coping with Anticipatory Grief
One of the first things to understand about anticipatory grief is that it is a very normal process. You have not done anything wrong. The fact that you are grieving means that you care.
Be willing to talk with other people about what you are feeling. In Hospice, the idea is to treat the entire family because anticipatory grief is very powerful. If hospice is not available, talk to your clergy or begin to see a therapist. There are support groups that can help and many are free of charge.
Talking is a release and grief is very much like a deep pressure that we contain until we explode. Talking relieves that pressure and helps us to see grief for what it is and to recognize why we feel what we do. Talking is good for the entire family and for the patient.
It is important to acknowledge that this is a loss for everyone involved. This is not specifically about giving up the fight, but a reorganization of your options and the tools available to preserve the quality of life and the dignity of the person who is dying. It is a way to make good use of the time that is left and to focus on being good to yourself and to your loved ones.
If you are facing a terminal illness, be sure to set up a support system for the people around you. As you move closer to death it is these people who will help you to handle the pressure and the stress. It is also wise to set up a support system that cares for the people around you. Many will carry the burden of death silently so as not to burden the person who is ill with their grief. Knowing that now, enables you to build a team that cares for all of you.
Grief is a natural part of being ill and facing a terminal illness. It can be devastating and paralyzing, but by recognizing what it is and how it works empowers you to handle it.
When my father died, I wanted desperately to know the timing of this thing. But grief doesn’t have a timeline.
By Andy Kopsa
I got a text message from my father.
My first thought: impossible — that old man doesn’t know how to text.
My second thought: impossible — my father is dead.
My dad died on Sept. 4 — a Tuesday — just a month shy of his 82nd birthday. He was a farmer, just like my grandfather, and was the hardest working man I knew.
There are four of us kids; my brother and I just over a year apart, then a five-year gap and two sisters back to back. My father took a subtle approach to parenting. This resulted in my mother screaming on various occasions, “Leo, get those kids off the top of that barn/tree/tractor/wagon!”
He lived long enough to grudgingly retire, my brother taking over the farm where we were all raised, as was always understood. Dad couldn’t stay away from the farm, puttering around in the huge back garden; planting various squash (or as he pronounced it, “skwarsh”), potatoes and tomatoes; wrangling grandkids to till, plant or pull weeds.
I always figured dad would die on a tractor or performing some other farming-related task. I looked back down at my phone, afraid to read the message because for one moment so bright and terrifying I allowed myself to think: What if?
I opened it. It was from my nephew letting me know he took over my father’s telephone number; he couldn’t bear the thought of it going to someone else. I let myself cry fully then, relieved it wasn’t my father texting from beyond and shattered because he wasn’t.
As an investigative reporter, it is my job to get to the bottom of things, to make sense out of stacks of police reports, pages of legislation, histories and patterns to produce articles — a distillation of findings and interviews arranged in neat articles hopefully interesting and easy to understand.
I started researching grief. I wanted desperately to know the timing on this thing. When would I stop dropping to my knees (out of the blue) and crying so hard for so long that my ribs hurt?
My research turned up the five — or seven, depending on the source — stages of grief. It revealed ways of grieving and ceremonies that were supposed to ease this time in my life. I was to be reassured, according to one theory, that everyone dies, that life is death, therefore grief will come to us all.
There is nothing less profound than pointing out the inevitability of dying to tie us all together in suffering.
I found out my father was dying in late April. It was still a bit chilly as I walked around my Upper West Side neighborhood that day. My phone buzzed and it was my mother, calling with results from the decisive test, though I can’t remember which one. Blood work? CT scan? Or was its ultrasound?
I answered, and my mother asked: “Are you home?” No, I wasn’t home, and no, I wouldn’t wait until I get home to call her back.
I sat on a bike rack at a familiar location down the block. I can still feel heat climbing the back of my neck to the tips of my ears, the way my gut plunged. We didn’t have the official diagnosis yet, but I knew it was the worst news. My mother told me they found something on his pancreas.
Nearly 75 percent of patients with pancreatic cancer die in the first year. Dad died within five months.
I started grieving before my father died. I learned there is a name for this: anticipatory grief. The worst thing about anticipatory grief is that no one gets it unless they have been through it.
Friends tried to understand as I raged on the phone, bawling. I got startlingly angry with people I love very much, loudly telling one friend to stop trying to relate to what I was going through and just listen, for Chrissakes. Every time my phone buzzed, my heart seized: This was the call, I just knew it. I asked to be taken off mass text chains. My nerves couldn’t take many more reply-alls.
My requests — please take me off mass texts; please, no phone calls, I don’t want to talk because I don’t have it in me; please, no cards, just please — offended some people. That reaction confused me and enraged me.
I told all this to my friend, a woman also named Andy. It made sense, she told me, because this death of a parent thing is bad and people don’t know how to respond. She said I am finding my tribe — the ones of us who watched our parents dying. This friend who knows, she said: “I laid in bed when my mother was down to 68 pounds with breath smelling like death.”
When I told my good friend Kristy about my father, she said: “Girl, let me tell you, watching your dad die ain’t nothing pretty.” Kristy knows. She watched her father waste away, dying three years ago from Parkinson’s disease.
I need these women and these women specifically. I don’t have to say a word and they understand. It saves me because I don’t have the patience or strength to try and explain, I don’t even have the right language.
In July, an EF-3 tornado ripped through Marshalltown, Iowa. I grew up in Beaman, about 18 miles northeast. Now living in New York, I watched the video footage pouring in: the clock tower sucked off the top of the county courthouse, roofs peeled back, hunks of metal turned into missiles.
As I watched shaky cellphone videos, I started to cry. What would happen to the Orpheum theater, where my father took me and my brother to movies, or grandma’s house, where we would stop after church on Sundays?
The day after my father died, my husband and I made a trip to Marshalltown for groceries. We decided to take a drive around and survey the tornado damage. It was incredible. I threw myself into our disaster tour, enjoying the destruction of other people’s things, greedily searching out the worst-hit blocks, the most destroyed buildings — I needed it all.
We turned onto Main Street to head back home, and I was talking fast to my husband in the passenger seat. I got louder; I was yelling now, driving, crying. I abruptly pulled over to the side of the road, alongside the destroyed courthouse, and I screamed and I screamed and I screamed. And then I stopped. Heaving, I accepted the Kleenex my husband silently handed me, I blew my nose, and we drove in contented silence the 18 miles home.
My father’s last day on earth was a rough one. I am convinced he overheard us talking about possibly taking him into the hospice. We couldn’t keep up the relentless pace his care required, even though we knew he wanted to stay home. I hated the idea, but we had to consider it. My mother thought so, too.
Then, my father spiraled quickly. One sister feverishly moved her flight up from London — she would be home the next day, she told my father on the phone, his face lighting up listening to her voice. My other sister, from Minneapolis, was on her way but was trapped sheltering under an overpass as tornado warnings swirled around Interstate 35.
I started a journal after my father was diagnosed. I wrote: “I just want him to feel good with the time he has left, I want him to find peace and acceptance. All I want is for him to not be scared.”
And, he wasn’t. My brother called the priest, and he was there within the hour. As he walked in, I heard my father say clearly and happily, “Well, hi Father, I was wondering when I would see you!” My brother and I knelt by his bedside as the priest gave my father last rites: three last sacraments culminating in final Holy Communion.
I lay in bed with him off and on that day. Gave him watered-down coffee through a straw — he winked, told me my coffee was better than Mom’s. I lay there, my father still warm beside me, and I looked out the window at the big tree in the backyard and told him I would remember to fill the bird feeders.
My research suggests there will be a period of adjustment as I try to find a new normal. So far my new normal has involved a variety of public and private acts of mourning. Some days my pain is like accidentally brushing fingertips across a hot iron, burning yet mercifully brief.
Other days I start crying over a bag of frozen shrimp at Trader Joe’s. Or like today, I stare out the back door at my wintry rooftop garden and think of summer tomatoes, the smell of dirt, of my father, and sob.
My phone buzzed. Another text from “Dad.” This time it was a picture of a squirrel teetering on the lip of a rusted old watering can. I laughed this time. I haven’t switched the contact name to my nephew’s yet, and I don’t know when or if I will. People may be tempted to file this under the denial phase of my grief. But they would be wrong. I know my father is dead, I was there.
But I get it. As Americans, we have been trained up to believe that grief is a process, something linear we are capable of understanding. But I am comfortable with my broken heart now after my dad’s death, comfortable even when my sadness reaches a maddening crescendo because that is when I get the gift of giving up.
There is relief for me now — not from sadness and pain — but from my own expectations of how I am supposed to feel. There is no timeline. There isn’t even a straight line, for that matter. And for the first time in my life, I am O.K. with that.
Do you laugh when someone’s grocery bag bursts? Do you find yourself stealing cabs? Have you shouted at puppies?
If you answered yes to any of these, then you may have Empathy Deficit Disorder.
For this Crowdwise, I asked you to recount some helpful things people said or did when you were in mourning — and to share some things that were decidedly unhelpful.
Your responses make it clear that Empathy Deficit Disorder (not a real condition, but maybe it should be) has reached epidemic proportions:
“After our daughter was stillborn,” wrote Wendy Thomas, “a colleague told me I shouldn’t have used the photocopy machine.”
“My first husband died of cancer when he was 35 and I was 26,” recounted Patrice Werner. “I still recoil when I think of the number of people who said, ‘You’re young; you’ll find someone else.’”
“My only child, Jesse, died by suicide at age 30,” Valerie P. Cohen recalled. “A friend wrote, ‘I know exactly how you feel, because my dog just died.’”
To be fair, knowing the right thing to say doesn’t come naturally. We’re neither born with that skill nor taught it. Our society generally avoids talking about death and grieving. Many of us haven’t had much experience with people in desperate emotional pain, so it’s not always obvious when we’re helping and when we’re hurting.
May the following pointers be your guide, brought to you by people who’ve been on the receiving end.
Rule 1: It’s not about you
Too many friends and acquaintances want to talk about how your loss affects them.
When Linda Sprinkle’s husband died, for example, she encountered many people who wanted to share their own grief stories. “They thought that it showed that they understood how I felt — but their grief is different from my grief,” she wrote. “I ended up dredging up emotional energy I didn’t have to comfort them.”
In her own mourning, Natalie Costanza-Chavez endured a parade of similarly self-focused remarks.
“Oh my God, I could never handle what you are going through!” (Costanza-Chavez’s mental reply, “Yes. Yes you could. You just do. And, you would. Don’t further isolate me with your own projecting.”)
“I didn’t call because I figured you wanted to be alone.” (Her: “Even if I did, you should always call, write, email, or text.”)
“I didn’t visit because I hate hospitals. I don’t do hospitals.” (Her: “No one likes hospitals, no one, unless perhaps you are visiting a new baby. Do it anyway.”)
“I’m so sorry for your loss to lung cancer. Did he smoke?” Or, if it was a heart attack, “Was she overweight?” (Her: “You are just trying to find reassurance that this scary, scary thing won’t happen to you. Stop it.”)
Ann Weber, a social psychologist who specializes in loss and grief, has identified another well-meaning but frustrating platitude, “Let me know if you need anything.”
“That suggestion seems like an innocuous promise,” Weber wrote, “but it’s often an exit line, just a way of escaping after the service or condolence call. And it puts the onus on the bereft person to be the one to ask for help.”
Rule 2: There is no bright side
You’ll hear many remarks that are intended to soothe you or lighten your mood. In principle, it’s a kind gesture. In reality, it’s never welcome.
When you’ve lost someone you love, you’re in a dark, raw place. Nothing anyone can say is going to cheer you up, especially observations that begin with the words, “At least.”
“At least she isn’t suffering,” was a particularly unhelpful line submitted by Beth Braker, who had to hear it. “At least you have other children,” recalled Margaret Gannon. “At least she didn’t die of AIDS,” remembered Jill Falzoi. “At least now you can have your own life,” Mary Otterson heard. (“I always had my own life,” she added. “Now I just have it without her in it.”)
And, from Emma St. Germain’s financial adviser, “At least you can move to another state now, with a more favorable tax environment.”
Crystal Hartley summed it up like this: “If you’re going to start off with ‘At least,’ just stop. It’s not going to be helpful. You’re trying to force them to look at the positive when they’re feeling terrible. Just acknowledge that the situation is bad enough exactly as it is, and validate their feelings.”
Humor, on the other hand, is tricky enough under the best of circumstances; when someone is in emotional agony, it can be excruciating. Don’t be the cousin who approached Frances Rozyskie at her father’s funeral to blurt out, “So! You’re an orphan now!”
Rule 3: Be careful with religion
Offering your beliefs about God and heaven to a nonreligious person can land with a thud, too. If the recipient doesn’t share your beliefs, you’re likely to add offense to the insensitivity.
When she learned that she had lost identical twins to a miscarriage, Donna Hires was devastated. “I ran into a friend who said words I will never forget, ‘Oh, I heard it was twins. I guess God didn’t think you could handle two at once.’ It took me years to forgive her.”
“In support groups for parents, ‘God never gives you more than you can handle’ is universally known as one of the cruelest comments for devastated parents to receive,” added Wendy Prentiss, whose 6-year-old nephew was diagnosed with a deadly cancer. “It suggests that the parents are weak for being crushed. It comes across as judgmental and tone deaf.”
Smarter Living
A weekly roundup of the best advice from The Times on living a better, smarter, more fulfilling life.
It also suggests, wrote Kathryn Janus, “that God had a hand in the death, and that’s just awful. And, P.S., sometimes the death is more than the bereaved can handle.”
Unless you’re certain that the bereaved shares your faith, then it’s best to avoid these remarks, passed along by readers like Nancy Field, Kathryn Janus and Kirsten Lynch: “She’s in a better place now,” “It was God’s plan,” “God wanted him up in heaven” or “You’ll see her again someday.”
Rule 4: Let them feel
One final bit of advice, “Don’t tell a grieving person how to feel. They may need to be vulnerable. They may need to cry for days on end,” wrote Kathryn Janus. In other words, don’t say things like, “Stay strong” or “Be strong.”
Indeed, the most helpful thing anyone said to Teresa Brewer in her time of loss was, “Whatever you are feeling, and whenever you are feeling it, it’s O.K.”
“I can’t tell you how liberating that was for me as I grieved,” she wrote. “There were times when many would think that I or my family should be somber, but we were howling with laughter. So it helps to be given permission for the feelings you have.”
What you can do, and should say instead
That list of what not to say includes many people’s go-to lines. So what should you say?
“If you knew the person, tell the mourner a story about that person — ideally in written format, because the family passes these around. There is no greater gift than a story about the loved one at the very moment it seems there will never be new stories,” Leslie Berlin wrote.
And if you didn’t know the person who died? Ms. Berlin suggests: “I didn’t know your [mom/dad/friend/sibling/child], but based on who you are, s/he must have been [nice adjective here].”
If you have only a moment to interact with the bereaved, like in passing or at a funeral, here are some of your best suggestions:
“I know how much you loved her.” — Beth Braker
“I wish I had the right words for you.” — Kathryn Janus
“I can’t imagine what you are going through, but I am here to listen if you need me.” — Wendy Loney
For Karen Hill, “‘I’m so sorry’ is still the simplest and best.”
Finally, if you really care, do something practical to help. Launch into action.
“There’s a huge range of support. A hug in that moment, bringing food, listening when the person needs to talk, checking in, reaching out during the holidays,” wrote Patrice Werner. “Just do something. You will feel worse in the long run if you do nothing.”
The key, advised Margaret Gannon, is, “Don’t offer, just do it. Show up with lunch (or dinner). Drop in and do my laundry. Take the kids out for a few hours. And most importantly, talk about the person who died. I don’t want him to be forgotten.”
Christy Goldfinch summed it all up in her recollections of her husband’s death two years ago at 57. “The main things I remember were lots of hugs, and ‘I am so sorry,’ and personal anecdotes about Frank’s intellect, his wit, his compassion, his skill,” she wrote.
“Oh, and one other very helpful thing, folks bringing barbecue and beer to the memorial. This was Texas, after all.”
“You have to tell people how to be of support to you. You can’t just expect people to be able to know and read your mind about it,” she said.
I blinked, trying to process her words. My mouth was agape because I thought I wanted to say something, anything, to refute how that statement made me feel. I opted instead to close my mouth and sit on the side of the bed, slowly sinking into the plush mattress of the hotel room we were sharing.
It was early October, and I was in Charleston for the second time that year. A few months prior, I’d been devastated to learn my best friend from graduate school had been killed in a car accident. These few days I was spending in Charleston had been needed. A welcome distraction.
Moments earlier I’d vented to my friend about a searing frustration of mine—feeling unsupported as I grieve and the subsequent drain. To keep a good face, I had to do the work to extend grace to friends, family, and other well-intentioned people who said unhelpful things to me regularly. It was work I had very little energy to do.
What’s more, being vulnerable enough to admit to someone else how this new life reality of mine felt and being told the onus was on me was the last thing I wanted to hear. At first I was sad. Then I got really angry. So angry, in fact, that by the end of the next month I stopped reaching out to this friend for months. I was so incensed it led to a seething rage. Rage that became characteristic of much during the beginning of my grieving journey.
The night I’d found out Precious had died, I was alone in a fancy hotel room in Bogotá.
Those first few hours of knowing she was no longer alive I’d spent in a transcendental daze. I paced back and forth in that fancy hotel room devoid of any warmth. I called my mother because I didn’t know who else to tell. Didn’t know who else could possibly understand. Who would know what to say in response to me being devastated about their best friend randomly dying at 30 years old?
“Well, you know, everything happens for a reason,” she said.
I paused and delicately changed the subject and then made up an excuse to get off the phone. That was the first time I remember and could identify how it felt to be angry while being held captive to grief—hands tingling like they had fallen asleep, my face blazing and on fire, my chest constricted and heavy. I’d let that instance go and buried it in my psyche. But there are so many other instances that followed in those first few months to make me more enraged.
Several friends ghosted me, not bothering to acknowledge my friend’s death. Not even a blanket “I’m sorry for your loss” uttered to me. To this day, I haven’t heard from them. The abandonment and loud silence angered me. Other friends talked to me in a business-as-usual tone, unloading what I viewed as frivolous details about happenings in their lives. I didn’t have the capacity to entertain it all. The insensitivity angered me.
And there were the friends and people who really tried, who said on the surface things that were kind and should’ve comforted me yet didn’t. The “She’d be proud of you” and “Do something to honor her” and the copious heart emojis or offers of hugs whenever I vented online.
The fact that nothing placated me was my ultimate source of rage—one I returned to time and time again until it dawned on me that perhaps my anger was showing me something bigger than I had originally thought.
Western society and culture tells you how you should grieve. It’s insidious and subtle, but the instructions and latent expectations are there. Grieve quietly and in private. Expect people to feel sorry for you and feel comforted in their sympathy. Know that people will only care up until the funeral or memorial service; then they’ll continue on with their own lives. Be gracious with people’s verbal fumblings, the empty phrases, and the Hallmark cards offered up.
There isn’t room for anything other than sadness. Especially not anger. But those who are bereaved, as I learned, can be really angry. Because I lacked the support and understanding I needed as I grieved and grieved mostly alone, I turned to online resources and message boards. I scrolled through hundreds of topics and messages daily, ritualistically, from people who found themselves in this new grieving club as I now was.
Anger was one of the things I saw talked about the most. Anger and frustration most didn’t feel comfortable feeling, let alone expressing to those around them. I felt vindicated knowing I wasn’t alone but also at a loss for what to do next.
My anger manifested in an abject form of isolation. I pushed a lot of people away. I cut others off. I wasn’t vaguely interested in making any new friends. Most of it felt warranted at the time. Other parts were grief and sadness with nowhere else to go. My rage helped me to feel connected to my friend. If I wasn’t seething about the sucky hand I had been dealt, who was I? And if I did disconnect from it, would it mean disconnecting from Precious and forgetting her? The fear of that kept me locked into being mad and perpetually ruminating on all the ways I had been wronged.
It was stumbling upon a tweet that finally caused something to break and shift. The tweet was from psychotherapist and grief counselor Megan Devine and contained a graphic with words from her book It’s OK That You’re Not OK. They read:
The reality of anger never gets any airtime in our culture.
Anger is a response to a sense of injustice. Of course you’re angry; whatever has happened to you is unjust.
Anger, allowed expression, is simply energy.
Shown respect and given room, anger tells a story of love and connection and longing for what is lost.
Contrary to pop psychology and the medical model, anger is healthy, normal, and necessary.
“Your anger surrounding your loss is welcome,” Devine wrote in the tweet. “It’s healthy. It’s not something to rush through so you can be more ‘evolved’ or acceptable to the people around you.”
I remember crying when I read those words. I felt seen in a way that I had yet to feel aside from my scrolling on bereavement message boards and grief websites. But I also felt this levity that I could accept my anger as a by-product of loss. I had every right to be angry about losing Precious and all the things I had lost as a result of her death. What human wouldn’t be mad about having to scramble to feel some sort of normalcy when their sense of groundedness is taken from underneath them so tragically?
My anger was OK. It was not some black sheep of the heart making me a shameful person. How I had been coping with grief was the best way I knew how.
Almost eight months after Precious died, I found a therapist. Having the support of a licensed professional eased a lot of my anxieties but also gave me a new perspective on viewing how angry I had been. Grief, loss, and death affects everyone differently. For me, I channeled all my feeling into rage because it made me feel more in control to cut people off, push others away, and isolate as a form of self-protection. Anger had been my way of feeling less of a mess in unthinkable, devastating circumstances.
Looking back, as I approach the second year I celebrate Precious’ birthday after her death, I see my anger now as purposeful. It was my process of getting to the heart of how loss affected me on a deep soul level. And I’d encourage anyone grieving to open themselves up to feeling the anger and befriending it. Not shying away from how strong it may be when it is expressed. Anger, like so many emotions, has something to teach us. And if you’re like me, feeling your ire just may facilitate in your healing.
From DIY funeral services to death doulas, B.C. is on the leading edge of a trend that wants to make death a part of life, and a better experience for everyone. Meet the women leading the trend.
There may be no table more full of life than the corner booth at Paul’s Omelettery on Granville Street, where a group of women are talking over breakfast about death.
Three of the women are licensed funeral directors, two specialize in end-of-life planning, one is a celebrant, another an apprentice death doula — someone who assists families before and after death, the way a midwife does with a birth.
They call themselves the D’Posse.
The name is a playful nod to the word “death,” but their aim is thoughtful and resolute: to transform the way we commemorate and bury our dead, to bring death back to life.
Glenn Hodges, manager of Vancouver’s Mountain View Cemetery, has dubbed them “the disruptors” — part of what he says is a growing number of end-of-life workers, many of them women, who are quietly, respectfully, and often joyfully, working to take death out of the hands of the corporate monopolies, and give it back to families.
Although many funeral homes in B.C. still bear the names of the families that originally established them, many of these are owned by Service Corporation International, a conglomerate headquartered in Texas. SCI owns 45 funeral homes in B.C., about a third of the funeral service providers in the province. (SCI, which trades on the New York Stock Exchange, has repeatedly tangled with consumer advocates over everything from its pricing to sales techniques.)
Funeral director Ngaio Davis spent 20 years working for a number of providers in the corporate funeral industry before breaking away to start Koru Cremation, Burial and Ceremony (korucremation.com), which she runs out of a cheerful space on Kent Avenue in Vancouver.
Like the other women at this monthly breakfast, Davis says she was drawn to the funeral industry because she wanted meaningful work. “I wanted to do something that felt worthwhile,” says Davis.
Coming face to face with death never made Davis uneasy — but the funeral industry did.
“There are a lot of wonderful, compassionate people in the corporate funeral homes,” says Davis. What bothered her, she says, was the focus on profit: “What’s the bottom line?”
Davis says one funeral home she worked for stipulated that commissioned sales staff be in every meeting with grief-stricken clients to have the “face time” to push extras. At another job interview, she was grilled on what her average sales “per call” were — this was not the work she wanted to be doing.
Lisa Hartley is a ‘celebrant’ who officiates at weddings as well as funerals.
‘What can I help you do?’
Despite decades of scrutiny, the North American funeral industry has changed little since Jessica Mitford’s 1963 expose, The American Way of Death, in which she called the funeral industry a “huge, macabre, and expensive practical joke on the American public.”
A big part of that macabre joke is the cost.
The average traditional funeral in Canada costs $10,000, according to Stephen Garrett of the Memorial Society of B.C., and GoFundMe counts funerals among its fastest-growing fundraising categories.
“From a basic cremation at about $1,200, costs range up to $15,000 or $20,000 — which is fine if it’s in line with your budget. But that’s where we get into problems with funeral homes pushing that on people,” said Garrett.
In addition to basics, such as registration of death, transportation, sheltering and disposition of the remains, costs — and funeral home profits — skyrocket once the bells and whistles are added: the expensive casket, which may be incinerated days later, embalming (not a legal necessity in B.C.), makeup, hairdressing, flowers, grief counselling, memorial, and follow-up house calls to sell products, such as future burial services, to survivors.
Five years ago, Davis decided to do something different.
Davis says her approach to death is informed by her Maori heritage. “Maori practices around death and dying are very strong. You are with your dead. You don’t just let them be taken away and be controlled by others. The family is the one who is crafting and planning what happens, and what will be the final ceremony.”
At Koru, the reception room is simply decorated with none of the trappings of a traditional funeral home: no sombre music, heavy curtains, or staff in dark suits.
Clients can plan as elaborate or as simple a funeral, ceremony and cremation or burial as they wish. Koru also specializes in green burials — biodegradable casket or a simple shroud, and no embalming — and will facilitate DIY, family-led or “home funerals.”
“This week, I’m looking after a family that wants to take their father and husband back home to his condo in North Vancouver. They want to have him there, they want to give him a sponge bath, dress him, and let him spend his last night there with his wife,” Davis explains.
Davis will transport the man and bring a special table so he can be laid out in his own home. “We will move him onto the table so it’s more comfortable for them to bathe him and dress him,” said Davis.
The next day, Davis will return with the casket, which will be placed in the condo’s common room because it won’t fit in the elevator.
“They are lining the casket with sheep wool that one of the kids brought from Scotland, and then we will go to the cemetery,” said Davis.
“His wife knows what she wants. They’ve been married for 60-plus years — they want those last moments together.”
At Paul’s Omelettery, over the warm clatter of breakfast dishes, cups and spoons, Lisa Hartley, a celebrant who officiates at weddings as well as funerals, recalls meeting Davis when her father-in-law died unexpectedly in his West End apartment.
His death had come quickly and the family was unprepared.
“We didn’t know what to do. Someone said, ‘Call Ngaio,’” says Hartley. “Her first question to us was, ‘What can I help you do?’”
They didn’t have to go to a funeral home, something Hartley was uncomfortable with.
“Ngaio came over to the apartment, and sat on the sunny balcony with her checklist, and we went through all the options.”
The family chose to keep Hartley’s father-in-law at home for a short period, and her husband decided he wanted to participate in the washing of his father’s body. “I never expected him to do something like that,” says Hartley. “But it really helped him.”
While the family gathered in the apartment, Davis completed the preparations.
“When she had him ready, she wrapped his body in a beautiful red velvet cloth, but she came to us first and said, ‘Peter is ready to go now.’”
Hartley was deeply moved by the experience, and now works closely with Davis and other alternative providers as a funeral celebrant. “My special interest is in sustainability in death care,” says Hartley. That means being more hands-on, in DIY and home funerals.
Hartley’s ceremony design process includes in-depth meetings with the client and family and friends to talk about the person. “It’s quite beautiful, and it’s often the start of the healing process. People get to tell stories about the person that has died. I recently had one person who said, ‘I feel better already,’” says Hartley.
Jennifer Mallmes is a death doula who founded the End-of-Life Doula program at Douglas College.
When death is expected, a death doula can help the family prepare for what Jennifer Mallmes, founder of the End-of-Life Doula program at Douglas College, calls “a gold-star death.”
“Planning really does help with the death and bereavement process, even when people don’t want to die,” said Mallmes. “Barring sudden or unexpected deaths, you can have some choice in how you go. Who do you want around? Who do you not want around?”
A death doula will help individuals and families faced with an illness or a diagnosis that a death is coming plan home care or hospice care, work with funeral services. They can also help with making what life is left fulfilling: “We can help with a life review, ask what are the things I still want to do? We might look at services to help them accomplish those things.”
Death isn’t just a business, it’s a way of life
Garrett said that although the funeral business is slow to change, Baby Boomers are pushing the trend toward the “reclamation” of death and dying.
“The Boomers demographic changed the world they lived in — they questioned authority, lived through the Summer of Love, built the environmental movement,” says Garrett. “We’re on our way out, and that’s going to change things, if only because of the large numbers.”
About 34,000 to 35,000 people a year die in B.C. “That death rate in the next 10 to 12 years is going to head north of 45,000,” says Garrett. “We’ve got 916,000 Baby Boomers living in British Columbia with only one way off the planet.”
Glen Hodges is the manager at Mountain View Cemetery in Vancouver.
Although Statistics Canada doesn’t keep numbers on the kinds of funerals people hold, Glen Hodges says he has seen changes in people’s attitude toward death. Part of that has been the renaissance of the city’s only cemetery.
Mountain View shut down briefly after running out of grave space in 1986, but a new master plan created more space. Mountain View built columbaria (condos for cremains) to house niches for cremated remains, and reclaimed unused graves from families — a complex and provincially regulated process that applied to plots purchased at least 50 years ago and never used by family members in that time.
Hodges says the city has also been working to re-establish the cemetery as a place for the living.
“A cemetery is not just a utilitarian place for disposal of the dead and keeping of public records,” said Hodges. “(It is also) a sacred place to remember and commemorate, and it has a larger role within the community.”
That includes family oriented community events, such as its annual All Souls Night, which draws up to 2,000 people.
“We invite people to wander into the cemetery to light candles and leave mementos for their loved ones and be in a contemplative atmosphere filled with candles and music and in a place that is safe for them to speak of the dead and talk with others.”
Mountain View doesn’t require grave liners, so green burials are possible, as well as reburials, an option that allows families to open the grave and reposition any remains still there so a new casket can be added.
Hodges regularly hosts free workshops hosted by D’Posse members Reena Lazar and Michelle Pante of Willow EOL (end of life).
The workshops, says Pante, are designed to help people figure out how embracing their mortality can change the way they live. “Our lives are limited, they are precious and finite, so we ask how does that fact affect how we live?” said Lazar.
The workshops help people explore their thoughts and feelings about death and guide them through the process of creating what Pante calls “heart wills,” or love letters for the family and friends who will survive them.
Their clientele ranges through all age groups, says Pante, although many are healthy and in the Boomer demographic.
Boomers may be fuelling the trend toward a more compassionate, affordable, personalized experience after their final exits, but for Davis and her growing network, death isn’t just a business — it’s a way of life.
Many find their way to Koru after a negative experience elsewhere, says Davis — whether it was sales pressure that shamed them into overspending, a service that didn’t reflect their loved one’s personality, or a makeup job that made them look like a stranger.
“Here was this very important moment in their lives, and they were robbed of it. It could be a special time, or it could be something you never want to go through again. So I’m just doing my little bit to change that.”
Stephen Garrett, seen here at Mountain View Cemetery in Vancouver, is the executive-director of the Memorial Society of British Columbia.
The Planner
Stephen Garrett, executive director of the Memorial Society of B.C., a non-profit society serving 240,000 members, believes that much of the expense and discomfort families inherit when a loved one dies can be avoided with good planning. To help people making final arrangements, Garrett has designed the “All Ready To Go Binder” to help with the death planning process.
“When my sons were 21 and 23, I invited them over for beer and pizza. I had the death binder in the middle of the table,” said Garrett. “They were a bit shocked — they didn’t want to think about me being dead and I didn’t want to think about it either — but as a responsible parent, this was my gift to them.”
The mood changed as he went through his wishes and let them know that he would be throwing in a family holiday: an all-expenses-paid trip to India, where he wants his ashes to be sprinkled in the Ganges River. Making a plan that’s personal, that includes opportunity for meaning, is part of what can make the process fun, said Garrett.
The binder is available on the society’s website for a nominal fee, and Garrett would like to see every family in B.C. have one.
The All Ready to Go Binder is a place for everything from your last will and testament, to advanced care directives, funeral arrangement forms, and other details such as people to call, copies of personal identification, and celebration-of-life plans.
The purpose of the Memorial Society is to help families prepare for and plan affordable services by partnering with ethical providers. The Memorial Society of B.C. offers lifetime membership for a one-time $50 fee. Members receive discounted prices of 15 to 30 per cent with participating funeral providers and access to support, advocacy and planning.
By The Numbers
$7,181: Average Cost of a traditional funeral (includes viewing, burial, embalming, transport of body)
28.6%: Percentage increase in average traditional funeral costs between 2004-2014
87%: Percentage increase in average traditional funeral costs between 1980-1989
The author’s grandmother, Marjorie Straus, with his mother, Margot Petrow, left, and his aunt Ann Youngwood.
By Steven Petrow
Last summer, six months before my mother died, I walked into her bedroom, and she greeted me with tinny hello and a big smile. She then resumed a conversation with her mother – who had died in 1973.
“Where are you?” Mom asked, as though Grandma, a onetime Fifth Avenue milliner, was on one of her many European hat-buying junkets. As I stood there dumbstruck, Mom continued chatting – in a young girl’s voice, no less – for several more minutes. Was this a reaction to medication, a sign of advancing dementia? Or was she preparing to “transition” to wherever she was going next?
Regardless, Mom was freaking me out – as well as my brother, sister and father.
As it turned out, my mother’s chat with a ghost was a signal that the end was inching closer. Those who work with terminally ill people, such as social workers and hospice caregivers, call these episodes or visions a manifestation of what is called Nearing Death Awareness.
“They are very common among dying patients in hospice situations,” Rebecca Valla, a psychiatrist in Winston-Salem, N.C., who specializes in treating terminally ill patients, wrote in an email. “Those who are dying and seem to be in and out of this world and the ‘next’ one often find their deceased loved ones present, and they communicate with them. In many cases, the predeceased loved ones seem (to the dying person) to be aiding them in their ‘transition’ to the next world.”
While family members are often clueless about this phenomenon, at least at the outset, a small 2014 study of hospice patients concluded that “most participants” reported such visions and that as these people “approached death, comforting dreams/visions of the deceased became more prevalent.”
Jim May, a licensed clinical social worker in Durham, North Carolina, said that family members – and patients themselves – are frequently surprised by these deathbed visitors, often asking him to help them understand what is happening. “I really try to encourage people, whether it’s a near-death experience or a hallucination, to just go with the flow,” May explained after I told him about my mom’s visitations. “Whatever they are experiencing is real to them.”
Valla agreed, telling me what not to do: “Minimize, dismiss or, worse, pathologize these accounts, which is harmful and can be traumatic” to the dying person. In fact, May said, “most patients find the conversations to be comforting.”
That certainly appeared to be the case with my mother, who had happy exchanges with several good friends, who, like my grandmother, were no longer living.
In a moving 2015 TED talk, Christopher Kerr, the chief medical officer at the Center for Hospice and Palliative Care in Buffalo, showed a clip of one his terminally ill patients discussing her deathbed visions, which included her saying, “My mom and dad, my uncle, everybody I knew that was dead was there (by my side). I remember seeing every piece of their face.” She was lucid and present.
Since Mom had already been diagnosed with advanced dementia, I originally thought her talks were a sign of worsening illness. In fact, current research posits that a combination of physiological, pharmacological and psychological explanations may be at play. That’s exactly what May’s hands-on experience of more than 14 years revealed to him, too.
May acknowledged that it’s understandably “hard to have empirical evidence” for such episodes in patients, but that it’s important for family members and health professionals to figure out how to respond
Last fall, another visit to Mom raised the stakes. As before, she greeted me by name and spoke coherently for several minutes before she turned to the bookcase near her bed and began cooing to an imagined baby. I watched in astonishment as Mom gitchi-gitchi-goo-ed to an apparition she referred to as “her” baby.
“My baby is very sick,” she repeated, clearly deeply concerned about this apparition. “She’s very thirsty. She’s hungry. She’s crying. Can’t you do anything for her?”
I didn’t know what to do. Neither did my siblings or Dad. I had long stopped “correcting” Mom. A year earlier, Mom had regaled me with the story that my niece Anna had made a delicious dinner the night before and was at that very moment out doing errands. In fact, Anna was away at college; also, I’ve never seen her cook, and she doesn’t even have a driver’s license. But why contradict Mom’s vision of a perfect granddaughter?
Social worker May, when asked about these sorts of imaginings, put it this way: “Don’t argue, because an argument is not what they need.” I decided to go along with the “baby” story and told Mom I was going to take the baby to the kitchen to bottle-feed her, which alleviated the crisis.
As the fall days grew shorter, Mom’s “baby” was a continuing presence at my visits, with my mother becoming increasingly distressed. I would settle things down by giving the imagined infant an imaginary bottle, or cradle her in my arms and leave the room for a while, saying I was taking her to the doctor. At one point I asked gently, “Mom, do you think the baby is you?” She didn’t miss a beat. “Yes,” she replied. “The baby is hurting.”
In fact, the largest study to date on deathbed visions reported on numerous cases when the “arrival of … a visitor appeared to arouse anxiety and intensify death fear.”
But what to do? I hated that Mom’s level of distress was skyrocketing in what turned out to be her final weeks. I simply held Mom’s hands a bit tighter and tried to distract her as best I could with family and political news. Oh, and I cooked, which she loved my doing.
One evening I made a simple dinner: spaghetti with a store-bought marinara sauce and a bright green leafy salad. Mom had pretty much stopped eating by this point, which is common as the end draws near, but she made a show of trying her best with this repast for the two of us, plus my father. It was heartbreaking to watch her try to spear the pasta, but she managed several hearty mouthfuls, saving room for a scoop of Sealtest vanilla ice cream.
After dinner, I helped her back to bed, where she exclaimed: “How did you know?” “How did I know what?” I asked. “That was exactly how I wanted my funeral to be. You invited all my favorite people, and the food was just what I would have ordered.”
She was beaming. Six weeks later, she passed – and pasta and salad were on the menu at her service.
Joan Didion’s “The Year of Magical Thinking” is a thorough, painfully poignant exploration of grief. Didion constructs this memoir with the same clarity and precision she employed in the journalistic works that brought her to fame in the 1960s and 70s. She guides the reader through her year of “magical thinking” after the death of her husband, John Gregory Dunne. While the tone of her narration is objective, she indicates her route through the spiritual and fantastical by means of the vortex in her memories that always leads her back to her living husband and healthy child.
Didion picks apart the concepts of grief, mourning and death without skimming over any explanations. She describes the history of funerals, how modern society perceives sorrow as something shameful and prolonged grief as a form of self-pity. She goes through the literature of grief and relays Emily Post’s etiquette advice in times of bereavement. She learns the medical terms that doctors use regarding her daughter Quintana’s condition, which worsens after her husband’s death. And throughout that year, Didion returns repeatedly to the night Dunne slumps over at dinner, a movement so sudden that Didion initially registers it as a joke. “Life changes fast. Life changes in the instant,” she writes. “You sit down to dinner and life as you know it ends.”
Didion’s perspective is certainly privileged — one can sense it from the places she’s been and the people she knows — but as much as that might estrange the reader, she doesn’t emphasize those specific details. If her closest friends happen to be celebrities, or if her memories take place in glitzy cities, Didion only mentions these facts and moments for context before focusing on the topic at hand: her personal experience with grief, and mourning, and the warning signs she wishes she had heeded before her husband’s heart attack on Dec. 30, 2003. In the book, Didion practices the anthropological version of “magical thinking” — she doesn’t deviate from her usual life routine, and she preserves her husband’s belongings (and therefore his presence) in the house. She’s unwilling to donate Dunne’s shoes, for example, because if she did then he wouldn’t be able to wear them if he returned. There is always this irrational but pervasive hope that if she performs the correct actions enough times, then Dunne’s death could be reversed.
As Didion studies everything she can find that’s been written about grief — not just novels, poetry and rituals, but also medical papers, psych studies and etiquette handbooks — she teaches the readers what she discovers from this process. Gerard Manley Hopkin’s poetry, which Dunne had referenced several times after his brother had committed suicide, returns to Didion as a talisman: “I wake and feel the fell of dark, not day.” She describes, with her trademark clinical style, how grief repeatedly and relentlessly strikes. “Grief is different. Grief has no distance,” she writes. “Grief comes in waves, paroxysms, sudden apprehensions that weaken the knees and blind the eyes and obliterate the dailiness of life. Virtually everyone who has ever experienced grief mentions this phenomenon of ‘waves.’” She cites Eric Lindemann, chief of psychiatry at Massachusetts General Hospital in the 1940s, who had defined the phenomenon as “‘sensations of somatic distress occurring in waves lasting from twenty minutes to an hour at a time, a feeling of tightness in the throat, choking with shortness of breath … and an empty feeling in the abdomen, lack of muscular power, and an intensive subjective distress described as tension or mental pain.’” This is a sensation that I, when grief-stricken, have been all too familiar with, yet I was still shocked to see how accurately described the emotions are on paper.
Didion has another famous essay, “On Keeping a Notebook,” in which she details her personal writing habits. For her, keeping a notebook has always been about preserving memories, both real and invented. “Keepers of private notebooks are a different breed altogether,” she declares, “lonely and resistant rearrangers of things, anxious malcontents, children afflicted apparently at birth with some presentiment of loss.” The sheer amount of documentation present in “The Year of Magical Thinking” is incredible. She and Dunne had recorded everything in writing — planners, notebooks, marginalia, kitchen books, Microsoft Word documents, a box with memorable quotes from a three-year-old Quintana. Didion combs through these records of their shared life in an attempt, almost, to resurrect Dunne through text. This gives “The Year of Magical Thinking” the intimacy of published diaries that personal essays, in their formality, seem to lack.
“The Year of Magical Thinking” is a wonderful read, objectively, but it becomes a necessary one for those who have experienced devastating loss themselves. Didion voices precisely what it feels like to lose what was once most important to the reader. When I suffered a great deal of personal loss, I experienced the same kind of magical thinking as Didion’s. At the time I kept wondering, what do I do with my life when there’s now a giant hole made freshly in the center of it, exposing my most vulnerable self to the rest of the world? How do I navigate the incident just before the loss occurred; how do I stop myself from returning to it over and over again? Didion didn’t give me answers, but she gave me her rapport, which turned out to be what I needed. This book gives the most to those who are in the process of grieving, offering not closure (“I realize as I write this that I do not want to finish this account,” Didion says) but an exploration of an experience the bereaved alone feel.
