When someone dies at home, everyone in the family is affected. Looking after a relative who is at the end of their life can be enormously rewarding, but carers have many unmet information and support needs. This can take a toll on their physical and emotional health.
Here are some tips if you are looking after someone nearing the end of their life.
1. Look after yourself
Carers looking after someone with a life-threatening illness have higher levels of emotional distress, including depression and anxiety, than the general population. It’s important you look after yourself.
Self-care might mean finding time to take a break from caring by signing up for yoga classes where calming breathing techniques are practised, or seeking counselling or support groups.
Caring can be very rewarding for both the carer and the patient. Research shows caring can make people feel closer to those they’re caring for. Carers often feel proud that they have been able to look after someone in their last years, months or days of life.
It can be a positive experience to think about the rewards of caring, like spending more time together or knowing you’re making a difference to a loved one at a difficult time.
It’s important you look after yourself.
2. Get informed
Caring for a relative at the end of life is likely a new experience. Many carers are learning on the job and often don’t feel practically or emotionally prepared for the task. Research consistently shows carers want to know how to safely carry out practical caring tasks, like moving the person in and out of bed, preparing suitable meals, and giving medication.
Emotional tasks might include listening to the patient’s worries and helping the patient write down their preferences for care and treatments in an advance care plan. When patients have an advance care plan, carers report less stress because key decisions have already been made and documented.
Palliative care services often have support groups or information sessions, which help carers feel more prepared and better informed. Such groups help meet carers’ information needs. They also increase self-efficacy (the belief of being able to personally succeed in caring tasks).
Recently, distance learning has been offered to carers and evidence shows this helps them feel more prepared to carry out their duties.
A carer’s emotional tasks might include listening to the patient’s worries.
3. Ask for help
Many current approaches to supporting people nearing the end of life involve working with whole communities. Known as compassionate communities, these approaches are based on the concept it is not just up to an individual carer, or the health service, to look after people approaching the end of life. Support can be everyone’s responsibility, from pharmacists, librarians and teachers to employers and colleagues.
Apps, such as Care For Me, and websites can help co-ordinate help from friends, family and the community. The website Gather My Crew offers a way for carers to list tasks they need help with, to take some of the pressure off themselves.
4. Talk about it
When someone is critically ill or dying, family members often decide not to share their worries with each other. Psychologists call this protective buffering. People do it to try to protect their family and friends from worrying more.
Although it is well-intended, protective buffering can make people feel less close. It’s OK to share worries with each other. Being able to talk about feelings means being able to deal together with the difficult things like pain or fear.
Talk about your anxieties.
Using the “d” words (death and dying) can be difficult, and is an outright taboo in many cultures. Find language that suits you: be direct (death), or use metaphors (pass away) or less direct phrases (getting sicker) so that you can talk about worries together.
5. It’s OK to think about the future
It’s hard to balance feeling positive and feeling sad about the person approaching the end of their life. Many family members and carers say they feel guilty for thinking about the future or making plans for after the person has died.
But research in bereavement has shown it’s normal and healthy to move between focusing on the here and now, and on the life after the caring role ends. This might be reassuring if you’re the kind of person who doesn’t always want to face emotions head on – distracting yourself by thinking about the future is actually a natural and healthy thing to do.
Grief is one of the most human of all emotions. At some point in our lives, it is something we all go through, probably multiple times, and it is never easy. This list of books to read when you are grieving won’t cure you of your grief, but it can help you make sense of it. Some of the books on this list will help help you through the beginning stages of grief, while others will help you make sense of some of the things you are feeling. There is a daily mediation on the list and many different perspectives on grief that are sure to be help you cope through such a difficult journey.
1. Grieving: A Beginner’s Guide
Jerusha Hull McCormack’s Grieving: A Beginner’s Guide is exactly what it sounds like – a good book to read when you are experiencing grief and loss for the first time.
2. It’s OK That You’re Not OK: Meeting Grief and Loss in a Culture That Doesn’t Understand
We live in a society that isn’t comfortable with grief and grieving and Megan Devine’s It’s OK That You’re Not OK is the antidote you need when you’re grieving and the world doesn’t understand. According to Devine, “Grief is simply love in its most wild and painful form. It is a natural and sane response to loss.”
3. Modern Loss: Candid Conversation About Grief. Beginners Welcome.
Rebecca Soffer and Gabrielle Birkner, the founders of the Modern Loss website, bring us this honest take book on grief, letting us know that it’s okay for grief to be messy, complicated, sad, and complicated.
4. Healing After Loss: Daily Meditations For Working Through Grief
Now considered a classic, Martha Whitmore Hickman’s Healing After Loss is a daily meditation that you work through a little bit at a time. It’s an on going recovery book and something to keep with you as you journey through the grieving process.
5. Bearing the Unbearable: Love, Loss, and the Heartbreaking Path of Grief
Joanne Cacciatore’s Bearing the Unbearable is a 52 chapter that “opens a space to process, integrate, and deeply honor our grief.” A bereavement educator, Cacciatore creates a book that is perfect for those grieving, therapists, and anyone else.
6. Tiny Beautiful Things: Advice on Love and Life from Dear Sugar
Known for her memoir Wild, Cheryl Strayed, who experienced the loss of her mother and her marriage, brings forth a lot of advice on grief in Tiny Beautiful Things.
7. Anxiety: The Missing Stage of Grief: A Revolutionary Approach to Understanding and Healing the Impact of Loss
Only a few months old, this new book takes a different approach and delves into an often overlooked aspect of grief: anxiety. Packed with advice on how to cope and strategies to get you through grief.
Dying doesn’t disappear at Christmas. For those who know death will come soon but don’t know exactly when, the festive season, when the air is thick with “joy”, can be particularly unsettling.
As a psychotherapist working in palliative care, I often see distressed patients in the lead up to Christmas. Patients can find decorations and carols being played in shopping centres particularly triggering, reminding them this may be their last Christmas.
The dying person may often face an inner struggle. They may want to be involved in activities but may not have the physical and emotional capacity to deal with the heightened stress and stimulation. Some may prefer to sit quietly and watch proceedings without necessarily being amongst the action, but still feeling like they are a part of things.
Regardless of the the type of life-threatening illness, and whether an infant, child, adolescent, young, middle or older aged person is dying, both the patient and their family members may experience deep distress. You may feel the impending death, and your family the anticipated loss. These gloomy or morbid feelings might clash with the celebrations of Christmas.
Whether it’s you or a loved one facing dying at this time of year, there are some practical tips available that draw from a wealth of research and experience.
If you are the one dying
Where possible, plan ahead how you want to spend your Christmas festive period so you don’t place additional pressure on yourself. Think about the most comfortable arrangements for you. Where and with whom do you want to spend Christmas Day? Which is the best time of day for you to manage different activities? Let people close to you know your thoughts.
The process of dying is unique to each individual. It may be quick or slow, spread over weeks or days. Palliative care specialist at Stanford University, Dr James Hallenbeck wrote:
For those who do die gradually, there’s often a final, rapid slide that happens in roughly the last few days of life — a phase known as ‘active dying’. A person may begin to lose their senses and desires. First hunger and then thirst are lost. Speech is lost next, followed by vision. The last senses to go are usually hearing and touch.
We have an ideal perception around death, that a dying person wants to be surrounded by family in their final hours. But some people in the active phase of dying may actually prefer to be alone. And while this may be difficult for family members to hear, you can give yourself permission to ask for whatever you would like.
Studies indicate some dying people may feel they’re a burden to their family. Other people have difficulty saying “no” because they don’t want to disappoint or hurt others, or they may fear conflict. Know your limitations and don’t push beyond these to simply please others.
Many dying people feel they may be a burden to their families.
Have kind consideration for yourself. Remember you are a person before you’re a patient. And remember it’s OK to say “no” and forgo invitations.
If you’re caring for a loved one who is dying
Essential care demands such as helping the person you are caring for to feed, go to the toilet, and clean themselves, will not disappear at Christmas. If your loved one is dying at home, they may require unrelenting attention.
Be realistic with your expectations. This can be a different and simpler Christmas than others. Allow for spontaneity. Try not to be a martyr and delegate and ask others to help. Doing so enables others to feel they’re included and contributing in special ways.
Listen to the person who is dying. Let them speak if and when they can. Gauge their mood and be guided by them. There is value in being present with the dying person without talking.
Heightened noise and activity, which often go hand in hand with the holiday season, can create distress for a terminally ill person. Ask family and friends to roster their visits over the different days of Christmas so as not to tire, overwhelm or stress the dying person.
People can think children don’t understand death and wouldn’t be able to cope with the concept, so often they may protect them by hiding it. But children are attuned to the family emotional dynamics. They know something is happening and they need their feelings validated. It can be helpful to get children involved in taking care of someone who is dying.
Research shows children do manage themselves well in the face of dying, when adults support them to deal with their responses.
Expect things can change quite suddenly. Have a backup plan ready. Keep emergency contact details readily on hand always.
When dying is happening at Christmas, it’s best to allow all feelings to be expressed rather than simply putting on a brave or smiling face. Feelings are a natural response to suffering and what may be a stressful situation.
It’s mostly important to remember not to hide your needs and feelings but to speak and communicate with your loved ones. Especially when dying may be imminent.
If you think telling your child Fido, Fluffy or Feathers has “gone to live on a farm” is a good strategy when the family pet dies, think again.
Involving your children in your pet’s death helps them grieve.
By Kellie Scott
You’re likely missing an opportunity to help them grieve and learn about death, no matter their age, according to the experts.
But what you tell them and how involved they should be is dependent on developmental stage and personality.
Being prepared is an essential part of helping your child through the pet grieving process.
We spoke to a child psychologist, vet and mum-of-two who experienced the loss of a family pet for advice.
Why lying about a pet’s death won’t help
“Pet death is a very big opportunity to learn how to talk about death and how to cope with future death, like extended family, for example,” says Elizabeth Seeley-Wait, clinical psychologist and principal of a children’s psychology clinic.
Children who ask the most questions are usually worriers.
Dr Seeley-Wait says the modelling a parent shows around processing and coping with the death will go “a long way for their children”.
“Everyone is different in their coping style, but what parents at least want is to be honest about what is going on, and as open as they can be in the process of feeling sad and going through those emotions over time.”
After all, she says, children will often catch you in a lie.
“And if not, they will figure it out later and feel pretty uncomfortable with that.”
What to do when your pet dies
Whether your pet dies naturally, in an accident or is euthanased, kids will have questions.
How you answer those questions will depend on their developmental stage and personality, says Dr Seeley-Wait.
“The younger the child, the more simple terms you should use, and you probably want to be more general,” she says.
When children reach the pre-teen and teenage years, naturally they are going to want more information, warns Dr Seeley-Wait.
“Parents should use their best instincts on that, because they will have a sense of whether their child can handle details.”
She says the children that ask a lot of questions tend to be worriers.
“Kids ask a lot of questions, but they also ask questions they can’t handle the answers to.”
What should be consistent through all the ages, she says, is children being involved in some way to grieve properly.
When Kasey Drayton decided to put down her 16-year-old dog Max, her daughter and son, aged nine and 11 at the time, knew it was coming.
“He had been sick for some time, so we were hoping he would pass away naturally, but that didn’t happen,” she says.
“We explained he was possibly in pain, and it was the kindest thing to do.
“There was a bit of resistance in that they didn’t want to lose him, but once they understood it was better for him, they were fine.”
How to decide if your child should attend the pet’s euthanasia
The younger they are, the less they need to see, recommends Dr Seeley-Wait.
“To be honest, there would be some teenagers who don’t really need to see that.”
Sydney vet Sandra Nguyen says in her observations, including children in the euthanasia can help them process the death.
Being prepared is an essential part of helping your child through the pet grieving process.
“I feel it’s hard for a kid to understand that their pet has gone to the hospital and won’t come back,” she says.
“I’m relatively comfortable for kids to be there if we are putting the pet down — not all vets are the same.”
Kasey included her children in Max’s passing, something she says was a beautiful experience.
“On the day, we explained the vet will come here and it will be quite quick,” she says.
“We all took turns in holding him and saying goodbye. Tears were flowing.
When children are present for a euthanasia, Dr Nguyen keeps her language around the process as simple as possible.
She explains the euthanasia process as an injection that is an overdose of anaesthetic.
“I do tend to use pretty frank language, but I soften my voice,” she says.
“A friend of mine who is a childcare worker said not to say ‘put to sleep’ as kids can then associate sleep with dying.”
Dr Nguyen also prepares parents for how children might react.
“I’ve seen kids absolutely sobbing … but as they are leaving the pet hospital they will turn to Mum and Dad and ask for a new puppy,” she says.
“The parent can get quite upset that the child doesn’t seem to be mourning the loss.”
But ultimately, Dr Nguyen says having your child attend a euthanasia is a case-by-case situation.
“Some parents don’t want their kids’ last memories to be of the pet dying, and that is the same with adults — some people decide not to be there for the euthanasia themselves.”
How to deal with the aftermath of a pet dying
No-one grieves the same way, explains Dr Seeley.
In Kasey’s experience, her two children dealt with Max’s death differently.
“My daughter put a little shrine up in the bedroom and kept his collar and his old dog toy,” she says.
“She still refers to him and keeps his spirit alive, and that was her way of grieving.
“My son grieved quite differently. They both felt it acutely, but very different.”
Rituals like burying the pet or planting a tree are worth making time for, Dr Seeley-Wait says.
“Do something that commemorates the life of the pet,” she says.
Max has a headstone in the backyard of Kasey’s property.
“Those moments are pretty special and memorable. And at least really model to the child that you should take a moment out of your busy lives to commemorate the passing of someone important.
“Talk, remember their pet, share stories, and let them feel a part of the process of the ritual of letting a loved one go.”
In Kasey’s home, Max lives on.
His body was cremated, and his ashes are in an urn in the backyard with a plaque.
“We still very much talk about him. That sort of helps.”
When somebody dies in the Catholic tradition, people generally know what to do. There’s the saying of the Last Rites at a dying person’s bedside, the vigil for the deceased — also known as a wake — and, often, a formal Mass of Christian Burial.
In the Jewish tradition, there’s the practice of sitting shiva: the week-long mourning process during which the family of the deceased remains at home, and friends and relatives call on them to pay their respects.
In the Islamic tradition, the deceased’s body is ritually bathed and shrouded in white cloth before Muslims of the community gather to perform the Salat al-Janazah, the customary prayer for the dead.
But what happens when you die and you don’t follow any faith tradition?
When Iris Explosion — an entertainer and social worker who prefers to go by her stage name — was widowed unexpectedly at age 28, she and her friends had to create the memorial service for her husband, Jon, from scratch.
Explosion and her husband were not conventionally religious — she describes herself as a “lax Jew,” while her husband, a queer man interested in alchemy and other occult practices, often felt alienated from the born-again Christianity of his parents. The memorial service her friends created a few days after his death, she says, contained a blend of traditions and practices individual to Jon.
A Jewish friend recited the Mourners’ Kaddish. The group told stories — some reverential, some “bawdy” — that reflected all aspects of Jon’s personality. They played an orchestral rendition of the theme song to Legend of Zelda, Jon’s favorite video game. Friends from out of town dialed in on Skype to share their stores. Numerous friends gave Explosion rose quartz, a stone associated in some New Age and occult traditions with heart healing, as a gift.
The memorial service — as well as a second funeral service, which took place a few months later, and was similarly eclectic in style — focused on Jon’s personality and interests rather than being constrained by a specific set of traditions.
Explosion is just one person among the 24 percent of Americans who identify as religiously unaffiliated. For the religious “nones,” the issue of what happens when you die is an open question in more ways than one. According to a 2008 American Religious Identification Survey, the most recent year for which data is available, 29 percent of Americans do not anticipate having a religious funeral, for whatever reason, and given the steady increase in religious “nones” over the past decade, that number will likely only rise.
But what do secular funerals — or death rituals more broadly — look like? What can they provide that religious death rituals can’t? What are the challenges involved in putting them together?
And as secular funerals become increasingly individualistic, tailored to the preferences and needs of the deceased, rather than a given religious or spiritual tradition, what does that mean for the sense of community engendered by ritual?
Secular funerals are part of a wider “unbundling” of religion
It started with weddings.
Scholar and psychologist Philip Zuckerman, author of Living the Secular Life, suggested in a telephone interview that secular funerals are just the latest iteration of the secularization of major life stages overall.
Its genesis, he said, lies in the proliferation of secular weddings in America. In 2017, just 22 percent of American weddings took place in houses of worship, a nearly 20-point drop from 2009, according to data from the wedding website the Knot.
“The first thing we saw was zillions of people going online and registering with the Universal Life Church,” said Zuckerman, referring to an organization that virtually automatically ordains people over the Internet, “so they can perform their own weddings for friends and family, so they can still make it sacred but not under the auspices of religion.”
Different states have different laws about the extent to which Universal Life ordinations are legally valid for performing weddings. Funerals, however, have no such restrictions.
Zuckerman posits that among the people he’s interviewed for his book research, the desire to have a secular funeral isn’t just about not wanting to affirm the existence of a God or an afterlife that the deceased may or may not believe in. Rather, he says, it’s also about wanting to preserve a sense of the deceased’s individuality.
“They just don’t want fairy tales. They don’t want to be told, ‘So-and-so’s in a better place now,’ or, ‘So-and-so is now suckling the bosom of Jesus’ — they can find that talk annoying,” Zuckerman said. “We want to curate our own Facebook page. Why wouldn’t we want to curate our own funeral?”
More and more, Zuckerman said, he sees people choosing their own music and their own speeches that they want to be read after they die. “I think that is part of our growing individual and less of this care of tradition … more and more people want to feel the idiosyncrasies of the dead person and the specialness of the dead person.”
This attitude, he said, is particularly prevalent in the United States. “We all like to think in the United States that we’re special. Why wouldn’t we want our funerals to be special too?”
Certainly, for Iris Explosion, commemorating Jon’s life in a way that felt true to his personality and character was a priority. From sharing Jon’s favorite Spotify playlists with his friends to curate the music selection for the services to working in references to My Little Pony — a show Jon loved — Explosion and the couple’s friends created a memorial for Jon that fit his character.
By contrast, Explosion said, she declined to attend other memorial services, like one hosted by Jon’s family in his home state, that had a more Christian focus, instead circulating an email to attendees of that service asking them to donate to Planned Parenthood, which she felt better reflected her husband’s values.
Explosion’s experience dovetails with a phenomenon called religious “unbundling.” A term coined by Harvard Divinity School researchers Casper ter Kuile and Angie Thomas, who have covered how phenomena like CrossFit and Soulcycle function similarly to religions for their participants, “unbundling” refers to the way both the religiously unaffiliated and the religious alike are increasingly willing to pick and choose elements of spiritual traditions.
Someone might, for example, be a committed Christian but also practice Buddhist meditation or yoga, or be an atheist but attend Jewish family holidays and read tarot cards. In a pluralist landscape, in which people are used to gathering information and ideas from multiple sources (not least through the internet), a more individualized approach to religion and life rituals is all but inevitable.
As a culture, we still haven’t figured out what secular death rituals should look like
Even for those of traditional faiths, death is a phenomenon that defies easy answers. But for the religiously unaffiliated, processing and dealing with death and its aftermath can be an especially loaded task.
Brad Wolfe is trying to help them do that.
Wolfe is the founder of the week-long Reimagine End of Life festival. The singer-songwriter and author was inspired to work in the end-of-life space after watching a close college friend’s struggle with terminal cancer. The festival, which takes place in New York and San Francisco, partners with community centers and artists to curate a 300-strong series of events — from talks to workshops to performances to museum displays — dealing with the subject of death.
“Death is often the central coalescing element around which many religions are formed,” Wolfe told me in a phone interview. “As we’ve become more secular in some communities … there’s an increasing hunger for that space … to come together and explore this topic.”
The New York festival, which took place around Halloween, featured a range of explorations: a class on how to write your own obituary, doctors talking about dealing with their patients’ deaths, live musical performances exploring themes of loss and bereavement.
Participants speak at the the Nocturnists storytelling event where doctors from Mount Sinai, New York University, Columbia, and other local hospitals share their personal experiences with death.
What connects each event is a sense of intentionally: that people are actively setting aside time and space to deal with a weighty topic.
Both Wolfe and Zuckerman identify similar elements of what that “coming together” looks like. Ideally, both say, it involves elements of ritual, community gathering, and a sense of meaning: How do we conceptualize a person’s death as part of a bigger picture?
Wolfe suggested that we might be better off looking at this “coming together” not as a nonreligious event but as an expansion of the definition of what religion means. At least two Reimagine events are, fundamentally, immersive theater performances. In one, participants are invited into a phone booth to have conversations they wish they’d had with somebody who has died.
In another, participants role-play members of a fictional bereavement support group. Speaking about these events, Wolfe argued that the lines between art, ritual, religion, and performance are deeply blurred.
“The boundaries between art and religion are more porous when it becomes a practice explored with intention,” he said. What matters is the sense of significance shared by participants: “Having a practice, a shared system, allows us to connect in ways that give us a sense of comfort and something we know we can turn to.”
The idea or combining artistic creation and end-of-life ritual is far from new to Janie Rakow, president of the International End of Life Doula Association. As a “death doula,” Rakow works in hospices, helping those facing the end of their lives develop rituals and practices around their death. While she works with patients from a wide variety of religious backgrounds through the hospice, she tailors her work and approach to the individual in question.
One of the most important parts of the end-of-life process, she says, is the act of creation. She helps her patients develop what she calls “legacy projects”: individual artistic works, from a memory box to audio letters.
“Everyone has a legacy,” Rakow says. “So [I ask myself] what kind of legacy project could we possibly create with this person to really leave behind a sense of who they are or were?”
Next, she asks patients to help plan their own death — where they would like to be? What music they would like to be listening to?
“There may be some ritual work done around that,” she says, even if it’s “as simple as surrounding their bed, holding hands, saying a prayer or saying poetry, reading something to them, [or] lighting a candle.”
The point is to help dying people take an active, creative role in the story they leave behind.
Doula Craig Phillips pauses before entering the room of a person who is near death at the Gilchrist Hospice in Baltimore on June 6, 2016.
Often, Rakow says, these rituals are tailored to individual passions. She gives the example of one man she worked with, who was dying from ALS, a degenerative neurological condition that prevented him from being able to move. With his wife, Rakow created a series of guided visualizations for the man, who loved hiking, “so we would bring him with his eyes closed on the most detailed and specific hike that we could from the very beginning to hiking all the way through.”
She’d walk him through ”smelling the forest and feeling himself walking up the hills and hearing the birds chirping and looking over at the crystal clear lake. And the more descriptive we could get, we were able to bring him back into his body that he wasn’t able to use through his mind.”
Secular rituals present their own set of challenges
One of the most difficult parts of creating secular death rituals is compensating for the lack of built-in community, or built-in structure, that often accompanies more established religious traditions.
Zuckerman pointed out that the secular bereaved don’t necessarily have a clear road map, or community support, to help them deal with the pragmatic aftermath of a death.
“One of the biggest problems for secular culture [is that] you have to cobble together and make it yourself. If you want your kid to have a bar mitzvah, it’s all taken care of. You want your kid to go through confirmation class in the Episcopal Church? Boom, they’re enrolled. If you want to do a secular version of that? Good luck. You’re on your own. You have to figure it out, explain it to people, rent the space, find people, figure out how to write up your own program. … It’s a lot of effort.”
The lack of intentional secular communities, Zuckerman said, only intensifies this problem. “With religious communities,” he said, “not only is the structure of the funeral in place, but there are going to be people who are going to immediately sign up to cook dinner for your family for a month and they’re going to deliver food to your doorstep and they’re going to help you get your kids to school and they’re going to do a lot for you. And when you’re secular, you don’t have those kinds of resources.”
Pallbearers escort the casket to the altar during the funeral for Watertown firefighter Joseph Toscano at St. Patricks Catholic Church in Watertown, Massachusetts, on March 22, 2017.
For some secular Americans, the idea of having a “chosen family” — a close-knit network of friends — helps fill in the gap. Just as Friendsgiving has become a phenomenon among urban millennials, friendship networks more broadly have become an increasingly vital part of social cohesion, replacing both extended family structures and traditional organized religious communities.
That was certainly the case for Explosion. She cites her friends’ involvement in making the service possible at a time when she didn’t feel capable of planning herself. “I needed camaraderie and community,” she said, and I feel like I had it.”
At the same time, she says, she had less of a blueprint for how to cope with the next stages of grief after about six months.
“People go back to their own lives,” she said. “And it was hard to feel that sense of community. Without a church or synagogue to bind us together, it maybe felt like it dissipated. People missed their friend and their co-worker. But for me, it’s like, I miss my husband who lived with me, and it was hard to feel that sense of community after time had passed.”
The next step forward might be intentional secular communities
Explosion’s story points to a wider tension in the world of secular funerals and the creation of secular culture more broadly. On the one hand, the benefits of the “unbundled” religious landscape, for many secular Americans, lie in the opportunity to create truly new, individualistic rituals and experiences. We have the opportunity to curate our identities and public personae event after death, creating experiences that feel unique to us.
On the other hand, what risks getting lost in the process is precisely that feeling of collective identity that demands subsuming our individuality in a wider whole. Religious rituals and language, from Catholic ceremonial liturgy to the Salat al-Janazah, may not feel fully and uniquely “us,” but they nevertheless define and orient a wider community and give us a sense of shared values.
The 19th-century sociologist Émile Durkheim saw religion primarily as a shared construction of identity; in his seminal 1912 work The Elementary Forms of Religious Life, he wrote, “The most barbarous and the most fantastic rites and the strangest myths translate some human need, some aspect of life, either individual or social.”
As more and more Americans leave organized religion, the next question is whether, and how, many of them will gather together, and how an increasingly individualistic conception of identity can be reconciled with the real, human need for group belonging. As secular funerals and death rituals become the new standard, we may see some of these rituals become more group-centric.
For Explosion, for example, the process of grieving led her to an unexpected new ritual. During her husband’s life, she said, she often played a video game called Destiny with him, looking up the location of objects hidden in-game and giving him hints to find them. While she never particularly got into the game, she said, she enjoyed playing it with him. After his death, she started watching YouTube videos of people playing the game, or its sequel, to remember the time they’d shared. Then she decided to buy the game’s sequel to play it herself.
“I’ve been playing this game I wouldn’t have played if he hadn’t died. And it’s been meditative for me. Finding the little things, like doing these things we used to do, felt like a pilgrimage in a way,” she said.
Sometimes, Explosion communicates with other players in the game online. While she’s only told a few of them about her personal history with the game, she’s nevertheless found a community that can accompany her in a time of grief.
“When we do a big quest or a raid together, there’s always a moment for me of, you know, okay, he would have done this. He did this in the old game. Now it’s me kind of picking up this mantle.”
The secular funeral liturgies we see in the future may transition from being individualistic to being based on other nonreligious elements that bring a community together. They may involve the music of My Little Pony or the playing of video games.
Ultimately, they’ll represent two fundamental human needs. First, to make sense of a beloved’s death. And second — and just as importantly — to not do it alone.
Grief, as you might have sadly discovered, is like a river that takes us where it wants us to go. We can’t stop those heartbreaking reality waves of anguish but we can learn to once again drift with purpose. Getting there is rough, because no matter how many well-meaning friends tell you “time heals all wounds,” there are just some losses we get “through” but we never get “over.” No grief is like your grief because no relationship was quite like yours.
Grieving the loss of a loved one is horrific enough, but it is even harder when you’re a member of the LGBTQ community. I know. I’ve felt this disenfranchised grief. Gay grief is marginalized. Many of us, depending on where we live and what kind of network we have, are excluded from experiencing society’s mourning process.
My girlfriend of 14.5 years died five years before same sex marriage was made legal. While I was the health care proxy and caregiver, I’m haunted that I was not able to file a wrongful death suit regarding medical malpractice because I was not an “immediate family” member. I was not invited to the funeral hosted by her family. And compared to many of my gay sisters and brothers, I got off easy.
There are thousands of members of our community who cannot even tell their employers that the love of their life has died for fear of losing their job, and much worse.
We’ve made significant inroads in the past decade. But despite legislation on same-sex marriage, a push for tougher anti-hate crime laws, and the World Health Organization’s declassification of transgender people as ‘mentally ill,’ the prejudice has not gone away.
The current administration has unleashed a culture of hate that is once again stacking the deck against us. They have erased LGBTQ terminology from various government forms. Beautiful families with same-sex parents are scrambling to lock down their rights in the event that rulings are overturned. Many are forced to conceal their true selves for fear of harassment. This dread and anxiety, especially among our trans family members, is making access to proper healthcare a terrifying experience.
Homosexuality is illegal in 73 countries. While not criminal in the U.S., there is a menacing climate present that ranges from wedding cake controversies to harassment and beatings.
If you lose your precious love, you might be denied a proper grieving process. This grief is forceful, commanding and unpredictable. We must grieve the loss of our loved one and the person we became with our love by our side.
If a long-term illness is the ultimate cause of death, will the medical staff be considerate and respectful of your relationship? How will you manage the discussions with the funeral home and cemetery arrangements? Will it be difficult to deal with your dear mate’s family? Are you afraid to tell your boss and co-workers about your relationship? These are questions straight people never have to ask.
Gay grief is often not taken as seriously as the bereavement process is for a hetero relationship. Co-workers, neighbors, and so forth, might not have any gay people in their circle of friends and don’t know what to say. They might not even try to console you. You might be completely ignored.
It’s important to stick close to like-minded people, your LGBTQ family, friends and straight allies. The good kids on the block. If your gay community is small or non-existent, reach out to online resources including the Human Rights Campaign, The Trevor Project and Parents & Friends of Lesbians & Gays (PFLAG) to make connections.
Look for a place to put your pain. Create a memory box with notes, cards, mementoes and souvenirs of your love. Write a letter and say all the things you wished you had time to say. Schedule a grieving session with yourself every day or week until the rushing river begins to subside a bit. Consider joining a grief group, but wait for the loss to really settle in — that could take four to six months.
Finding a gay grief group is, of course, the optimum situation. Talk about your grief with caring people. Reminisce. It helps.
A naming opportunity offers much solace. Find a charity building a walkway or other structure and buy a brick, for example, with your loved one’s name on it. Contribute to a program that places park benches in your town inscribed with your loved one’s name. If this is not an option, plant a flowering shrub or tree to honor your lost love. Watch it flourish and blossom every spring.
Plan holidays and special dates of observance in advance so you won’t be alone or succumb to last minute plans with callous people who don’t, won’t or can’t acknowledge your loss.
Join organizations, get involved. You might be able to help someone who is also grieving this traumatic death of a love.
Above all, be grateful for the time you spent with this cherished partner. Your life was better for having them in your world. It changed you, it shaped you. Take the golden moments with you. Grief is a war, but you are a survivor.
‘They say you’ve got three months to live.” These were the words I spoke to my then-fiancé when I was 23 years old after learning that his cancer – malignant melanoma that spread to his liver, lungs, pancreas and brain – was likely to be fatal.
At the time, my only experience of “the end” was watching my parents disappear into a room where my grandparents were lying, and of seeing an empty rabbit hut at the end of our garden after the loss of a pet.
When I was 17 years old my father was paralysed from Hodgkins Lymphoma but, after a stem cell transplant, he defeated the odds and made a miraculous recovery. So, I had faith in the power of modern medicine over mortality.
However, not this time.
I was practically still a child when a doctor ushered me into a private room, whilst my soon-to-be husband, Eoghan, was in a chemotherapy session, and revealed his prognosis. I asked if I could be the one to tell him, and they readily agreed.
Perhaps, even doctors will do anything to avoid saying the T-word. Terminal.
In the next three months, I had a crash course in end-of-life conversation: the jargon, the euphemisms and the social awkwardness.
I froze with fear when I walked into the chemo ward and heard another patient ask my partner, “Have you ever thought about euthanasia?” But, in a way, that was better than the wall of silence.
After my husband died three weeks after our wedding day, even my closest friends evaporated or became stiff in my company. In the next few months, as I rebelled against my grief – drinking too much and becoming promiscuous – nobody dared challenge me or raise the topics I ached to discuss.
What on earth are you doing?
Do you really think this is helping you?
How does it feel to marry a man who is dying?
…Do you want to die too?
Do you know what to say when a friend’s loved one dies? Have you thought about the day your own parent, partner or best friend may no longer be visible? How would you discuss it, in a way that would be supportive, constructive, and even light-hearted?
If you don’t know the answer, you’re not alone.
A new study from the Royal College of Physicians in the UK has urged medical professionals to improve their bedside manner when it comes to discussing death, after identifying that “timely, honest conversations” about patients’ futures are not happening. However it’s not only doctors who need to become more comfortable with these conversations.
It’s been suggested that millennials are the generation most fearful of death, unlike our grandparents, raised through world wars, who learnt that life can be short. As medicine advances and life expectancy increases, we prefer to think of death as our “future self’s problem”.
But is postponing the inevitable increasing our terror of it?
As psychologists report a rise in young people presenting with anxiety linked to death, it’s time for honest, open, educational conversations about loss of life, and how it can look. Its not enough to be aware of Facebook’s ‘death policy’, warn experts.
“Death is still a certainty even if people are living longer,” says clinical psychologist Renee Mill from Sydney’s Anxiety Solutions CBT.
“When treating anxiety, exposure is what works and avoidance increases the problem. Talking about death or visiting a dying person will decrease your fear of death and make it easier to accept that it is a part of life. Every funeral we attend, no matter how hard, actually helps to reduce anxiety in this way too.”
And, it’s never too early to think about the end. “Planning in life is important,” says Mill. “We plan our careers, we save, we want to buy property – end-of-life is another part we need to plan. It means we get our wishes fulfilled and gives guidance to our loved ones who otherwise have to pick up the pieces.”
In a good way, change is happening. Since 2017, the multimedia project We’re All Going to Die has encouraged people to embrace their immortality and use it to empower their lives, through educational films and festivals.
The award-winning podcast, GriefCast, hosted by comedian Cariad Lloyd whose father died when she was a teenager, sees entertainers speak with startling honesty – and surprising humour – about death, from the logistics of palliative care and funeral plans to the long-term effects of bereavement.
When we can talk openly about death, we may also increase our chances of reducing suicides. To help people to help each other, Lifeline offer an online course in QPR – the equivalent of CPR for people experiencing a suicidal crisis.
As part of the training – which only takes an hour and costs $10 – people are urged not to tiptoe around the conversations. Instead, be direct: “Do you feel like you want to die?”
In our social circles, we need to discuss worst-case-scenarios. Do you have a will? Do you have death insurance? Are you an organ donor? As an Australian immigrant living 16,000 kilometres from my parents, I always have enough money in my bank account for an emergency flight home. Because, nobody lives forever.
It’s confronting but it’s necessary
During my book tour, I cried on stage for the first time whilst discussing my journey from a 23-year-old widow to a 34-year-old wife and mother of two. Because, for the first time in a decade, I have reached a place where I can talk about my experience of death – and really be heard.
I shared the reason I light a candle in my bedroom every evening and say a prayer: help me to act from a place of love, not fear.
“If my dad’s cancer comes back, on that day I will light that candle,” I said, “If my husband, who is here with my newborn, dies and I am widowed again then I will light that candle to remind myself to act from a place of love.”
We need to talk about death to be active participants in the full spectrum of life: so we can decide who to be when a doctor pulls us into a private room, when we answer the phone to bad news, when we say goodbye for the last time.
We are so scared of death, we don’t discuss what an honour it is to watch someone die; to be present – really present – when someone takes their last breath, to lean in and breathe them in, to put your head on their chest as their heart stops beating and kiss their skin as it transforms.
