A “vampire burial” unearthed at a Roman site in Italy is evidence of ancient funeral practices to stop corpses rising from the dead, according to archaeologists.
The body of a 10-year-old child was buried ritualistically with a stone in its mouth, possibly out of fear it would return to spread disease to its community.
Known locally as the “Vampire of Lugnano”, evidence collected from the bones suggest the child was infected with malaria at the time it died.
“I’ve never seen anything like it. It’s extremely eerie and weird,” said Professor David Soren, an archaeologist at the University of Arizona who has run excavations in the region for over three decades.
The remains are the latest unusual discovery to emerge from the Cemetery of Children, a site containing dozens of children’s bodies and evidence of witchcraft including toad bones, raven talons and bronze cauldrons.
Dated to a time in the fifth century when a deadly malaria outbreak swept across central Italy, archaeologists thought the cemetery had been set aside specifically for the babies and young children who would have been most vulnerable to the disease.
The “vampire” skeleton, which is of unknown sex, is the oldest child to be identified so far at the site.
It was one of five new burials discovered there over the summer, and was found placed underneath a makeshift tomb constructed from roof tiles.
“Knowing that two large roof tiles were used for this burial, I was expecting something unique to be found inside, perhaps a ‘double-inhumation’ – not uncommon for this cemetery – where a single burial contains two individuals,” said David Pickel, a PhD student a Stanford who directed the excavation.
“After removing the roof tiles, however, it became immediately clear to us that we were dealing with an older individual.”
The child’s open jaws and tooth marks on the surface of the stone were evidence that it had been placed in the mouth intentionally.
Similar burials have been documented from Venice to Northamptonshire, and along with dismembering bodies and forcing stakes through the heart are thought to be methods of preventing these “vampires” from returning to haunt the living.
“This is a very unusual mortuary treatment that you see in various forms in different cultures, especially in the Roman world, that could indicate there was a fear that this person might come back from the dead and try to spread disease to the living,” explained bioarchaeologist Jordan Wilson, another PhD student who examined the body.
Professoer Soren added: “We know that the Romans were very much concerned with this and would even go to the extent of employing witchcraft to keep the evil – whatever is contaminating the body – from coming out.”
An abscessed tooth, which can be a side effect of malaria, provided evidence that the child had been killed in the epidemic that struck so many of the cemetery’s inhabitants.
Elsewhere at the site, a three-year-old girl had been buried with stones weighing down her arms and feet – a practice also thought to prevent corpses from returning to life.
The researchers said these practices provide a fascinating insight into the thought processes of ancient Romans and their fears about life after death.
“It’s a very human thing to have complicated feelings about the dead and wonder if that’s really the end,” said Ms Wilson.
“Anytime you can look at burials, they’re significant because they provide a window into ancient minds.”
With much of the cemetery still unexplored, the archaeologists intend to return to the site next summer to complete their excavations.
Tom and Rosemary Ryan’s story parallels the story of Down syndrome these past 59 years.
Not only has the Orland Park couple lived the joy, challenge and learning curve that accompanies raising a child with special needs, they’ve dedicated their lives to pioneering change in governmental support, educational opportunities and societal views.
“A lot has changed over the years,” Rosemary said. “We’ve come a long, long way.”
Like many parents of special needs children, love thrust them into the world of advocacy. When there was no preschool for their son, Rosemary started one. When the concept of housing adults with Down syndrome in group homes instead of institutions was proposed, they jumped on board — landing smack in the center of a national debate and garnering the attention of ABC-TV’s “Nightline” with Ted Koppel.
And, now, as their oldest son endures perhaps the cruelest of characteristics often associated with his condition — accelerated aging — the Ryans are again at the forefront of the discussion.
Kevin Ryan is 59 but a checkup last spring revealed “he’s more like going on 70,” Rosemary said. “He’s gonna pass us up.”
Raising a child with Down syndrome is “perpetual parenthood,” Rosemary said, “if you are committed to wanting the best for them.”
Now in their 80s, the Ryans, who live at Smith Crossing retirement community, are simultaneously discussing end-of-life care for themselves and for their son.
Into the light
When Kevin Ryan was born Aug. 4, 1959, Tom and Rosemary felt the way many parents of newborns with special needs felt back then — alone. The support and advice that today are showered upon parents of babies born with Down syndrome was nonexistent then, Rosemary said.
Three pediatricians examined Kevin and agreed he had the condition characterized by an extra chromosome.
“They called it ‘Mongolism’ back then,” she said.
In those days, there were no prenatal tests to predict it, nor any way to prepare for it, she said.
“We didn’t expect an anomaly with our first baby, but it was meant to be,” Rosemary said.
The “new” thinking at the time was that the couple should take their newborn home, she said.
And that’s where the advice ended. Rosemary could find only one very dated guidebook at the library that she said was so negative, “I couldn’t get past page three.”
So she relied on her instincts and on training she’d received en route to becoming a pediatric nurse to get through the early years, she said.
“And we just kind of forged ahead,” she said.
The Ryans went on to have three more children, with their second son quickly passing his older brother developmentally. Rosemary gave up her nursing career to stay home and care for the children.
Testing had revealed that Kevin was on the border of EMH (educable mentally handicapped) and TMH (trainable mentally handicapped), she said.
Those terms have fallen from the lexicon, along with “Mongolism,” but what Kevin’s score meant, Rosemary said, was that he’d struggle in an academic program, but likely excel in a training setting. They chose the latter.
“Back in 1962,” she said, “public schools had EMH but no TMH.”
The Ryans were living in Jacksonville, Ill., then and Rosemary and another mom decided to start a school in a nearby church. They set up an advisory board with a host of professionals and townspeople, and hired two teachers.
Kevin attended for a year and a half, until Tom, who had given up teaching high school to work at State Farm Insurance, was transferred to the south suburbs.
Changing laws, changing attitudes
While Rosemary had been organizing a school in central Illinois, other parents were doing the same in Chicago Heights. In 1965, after the Ryans moved to Park Forest, Kevin began at privately run Happy Day School.
Ten years later, Public Law 94-142 mandated public school be available to all kids ages 3 to 21 (later extended to age 22), and Kevin transferred to SPEED Development Center in Park Forest.
SPEED, Tom said, “was the creme de la creme” and Kevin continued there until he turned 21 and returned to Happy Day for adult workshop.
The end of public school life often is a time of great concern and confusion for parents of children with special needs, Tom said, particularly if they haven’t planned ahead.
“Some people choose to have their adult kids just stay home,” Tom said, but that can lead to problems if the parents’ health begins to fail.
Kevin continued attending workshop at Happy Day and living with his parents until 1995.
Down syndrome is the most commonly occurring genetic condition, said Linda Smarto, director of programs and advocacy at the National Association for Down Syndrome in Chicago.
Approximately 6,000 babies with the condition are born each year in the United States, Smarto said. That translates to 1 of every 730 live births, a number that seems to be on the rise, she said.
“When my daughter was born 24 years ago, the number was 1 in 1,200,” she said.
“Eighty-five percent of (these) children are born to moms 35 years old and younger,” she said. “So it’s a great myth that (Down syndrome) only occurs to parents who are older.”
While individuals with the condition develop more slowly at the beginning of life, the end of life seems to rush at them. Not everyone with Down syndrome is afflicted with premature aging, Smarto said, but there does seem to be a precursor to that and Alzheimer’s disease.
“Down syndrome, (researchers) say, will find the cause for Alzheimer’s because (scientists are) really pushing to find some sort of a cure and learn why this is happening,” Smarto said.
The phenomenon can be heartbreaking for loved ones already wrestling with end-of-life care decisions. What to do with aging children who have Down syndrome is a huge concern, Smarto said, especially if the individual has medical issues.
But, she added, it’s the same concern for anyone with a disability. And it’s the same for elderly adults who don’t have a living child to help care for them, she said.
If a sibling or other family member isn’t available to assist, an individual may be placed in a state-run home. “Our goal is to have our individuals either live independently or with a family member,” she said.
Smarto said most of NADS referrals come from the south suburbs.
“We don’t really know why the occurrence of Down syndrome is a little more prevalent there. (Advocate) Christ delivers about 4,000 babies a year and we get a lot of referrals from there. But it’s also a higher level hospital that sees patients who need special care. And they have a special care nursery,” Smarto said.
“But it is interesting the statistics (when compared) to (Northwestern Medicine’s) Prentice (Women’s Hospital in Chicago), which delivers 10,000 babies a year and the commonality is not as much,” she said.
Smarto said much of the evolution of Down syndrome inclusion is owed to parents like the Ryans, moms and dads who’ve helped usher in change by volunteering, serving on boards and doing the work. Many of the improvements in the special needs community, she said, is credited to parental advocacy.
In the early 1990s, a group out of Galesburg came to Happy Day, now called New Star Services, and told parents they were going to start building group homes in neighborhoods, Tom recalled.
It was a new concept sweeping the country, he said, and they had found a lot on Broadway in Chicago Heights.
The Ryans were among several parents who signed on. At the time, Kevin was 31 and eager to get out on his own, Rosemary said, because his younger siblings had flown the coop.
But the city of Chicago Heights fought the idea and became “the test case for the nation,” she said.
“Chicago Heights took on the federal government,” she said. “Who do you think won?”
The battle introduced many to the acronym NIMBY (Not in My Backyard) and made national headlines. A photographer from U.S. News and World Report visited the Ryan’s home and a picture of Kevin ended up on “Nightline,” Rosemary said.
The city lost and had to pay the agency and the prospective residents, she said.
“Kevin got his check for $1,000 and we took him to Hawaii,” Rosemary said.
In 1992, the Adult Down Syndrome Clinic opened in Park Ridge. Run by NADS, the facility introduced the Ryans to Dr. Brian Chicoine, and what Rosemary calls “a world of support.”
Rosemary calls Chicoine’s book, “The Guide to Good Health for Teens & Adults With Down Syndrome,” the “Dr. Spock for parents of kids with Downs.”
Kevin continues to see Chicoine — these days for premature aging symptoms. His hearing is declining, he’s having trouble with his teeth, he walks with a cane, Rosemary said.
In 2012, fearing their son might encounter early aging issues down the line, the Ryans moved Kevin out of the group home and into Good Shepherd Manor in Momence.
“We got to thinking, if he was left in a group home environment and his physical or mental health declined, their only option is to put him in a (Medicaid) nursing home,” Rosemary said. “We didn’t want that.”
Good Shepherd Manor, Tom said, is the closest thing to a forever home. It serves 125 adults, many of them aged.
“They’re committed to lifetime care, no matter what happens,” Rosemary said. “If he gets dementia, if hospice is needed, they’ll take care of it.”
Now, Rosemary said, Kevin’s lifestyle mimics that of his parents. “We have every level of care we’re ever gonna need here (at Smith Crossing), and so does he there,” she said.
The Ryans’ other children are scattered from Maine to Hawaii, with Kevin’s closest sibling living 1,000 miles away, so, Rosemary said, “If Kevin outlives us, we’d like him to stay at Good Shepherd because that’s what he’s familiar with.”
Raising Kevin has always been about choosing the best path for him, Rosemary said.
Special needs can mean special, or additional, considerations, she said, but the condition can also bring a special kind of joy.
Their son has had many positive life experiences, including participating in Special Olympics, attending Prairie State College, serving as a church usher and holding several jobs in the community.
“He’s truly been a joy,” Rosemary said. “But it is hard watching him age. You almost forget you’re a senior citizen because you’re taking care of a senior citizen.”
Kevin, she said, “is still funny. He’s still a character. He still steals the limelight at family get-togethers.”
And, Tom said, a quiet day is when Kevin calls only two or three times on his cell phone.
“In a way,” Tom said, “he is sort of the person who ties our family together.”
Although Dr. John Langdon Down first identified the condition marked by an extra chromosome in 1866, it wasn’t until the 1970s that “Mongolism” was renamed Down syndrome.
“Some people,” Rosemary said, “like to call it ‘up syndrome,’ because the people who have it are more up than down.”
Dealing with a death as a teenager can be extremely hard. Many teens have lost loved ones, so you aren’t alone!
1 Never be afraid to cry. Crying is good for you. It helps you let go of some of the hurt or anger you may have. You shouldn’t feel weak or silly while crying. After all this shows that you loved the person and that they were important to you.
2 Talk to someone you trust. This could be a parent or guardian, your best friend or if you are religious, a pastor or priest. Talking about the one you loved can help you remember all the good memories you have had with them.
Help yourself to remember them. Listen to their favorite songs, look at pictures, read their favorite poem, plant their favorite flower in your garden. This is a good thing as it means you still have a small part of them with you.
4 Don’t blame yourself. This is a common reaction to the death of a loved one, but remember they wouldn’t want you to blame yourself.
5 If you are religious, find comfort in the fact they have gone to a better place. Remember that they are more peaceful, and there is no more hurt or pain were they are now.
Visit their grave site. This can bring some comfort as you can take care of their grave site. If you do not like visiting a resting place it does not mean you are a bad person, they would understand that maybe you don’t want to remember them that way.
Pray. Sometimes it can sound silly but if you are religious or even if you aren’t this can bring a lot of comfort as you feel closer to the person, you can talk to them and ask them to watch over you and keep you safe.
Have some alone time. Time on your own can help you get your thoughts together. Sitting in silence for a while can be quite comforting and can help you feel better.
Remember the person how you want to. Do not let other people tell you how to remember the one you loved. Remember them however you want. Your love for them could have been different than others.
Remember that they loved you. They always will and by feeling pain this shows you also loved the person.
Say goodbye. Say it however you want. Scattering the remains in a place they loved can bring some closure, also having a service can help you say goodbye.
In 1971, when I was four years old, my brother died of a congenital heart condition. Writing about this experience has prompted more responses than anything else I’ve ever written or spoken about. Untold and unheard stories appear in comments sections, strangers tell me cross-culturally consistent tales in the soft corners of conference rooms and speak about the siblings they’ve lost and how present the memories of them still are in their minds and hearts.
These stories all have one thing in common: a sense of being forgotten, left out of conversations about the dead, of rituals of mourning, and excluded from the respectful circle that is drawn around the bereaved.
One of the reasons stories of sibling loss spark so much interest is that the research literature in the area is so sparse. We still know so little about what children who’ve lived through this kind of death need as they mourn.
While the quantitative literature has explored the profound negative lifelong physical and psychological health impacts of this kind of bereavement, so many social and familial factors contribute to these impairments that it’s hard to imagine how the figures would look if families and communities were better equipped to respond to grieving children.
Part of the picture of sibling loss is that it is compounded. Children not only lose their sibling, but also the parents they knew disappear at least for a time into profound grief. This can lead to the loss of the child’s position as they try to cope with the higher expectations on their shoulders.
Adding to this complexity, the small body of qualitative research into children’s experience of losing a sibling highlights a raft of social failures. Silence about the mechanics of death, family isolation and the persistent myth across many cultures that children bounce back from grief more easily than adults are some of the most salient.
In this literature, grieving children tell us about what they wanted and didn’t get, and reading it provides some guidance on how to support bereaved siblings for anyone willing to listen. The following short list of suggestions is drawn directly from this qualitative literature.
Make genuine room for children in discussions
The evidence is very strong that grieving children of all ages need to be involved at every level in discussions about death and in the planning and performing of death rituals.
But, if we’re going to make room for them, we have to get across our own death material and be prepared to answer painful, graphic and profound existential questions about death and dying, such as:
Can you show me what a decomposing body looks like? Why are we going to burn my sister in her coffin? When will you die? And how? When will I die? Why do some people die while others keep on living? Why my brother and not someone else?
To tell the truths about death to children and to really include them in family and community meaning-making is to expose our culture’s myths of death and dying, whatever they are, to profound criticism and scrutiny. That is what we are being asked to do.
Accept that children’s grief is no different to ours
They spoke of wanting the adults in their lives to accept that their grief is no different to ours, that they are never too young to feel loss and that just because they are children doesn’t make them any more resilient than grown-ups.
They are asking us to challenge the almost universal myth that children forget, and instead to stand with them in their bereavement rather than setting them apart to take solace in their imagined innocence.
Honour continuing bonds with the dead
Our siblings play a significant role in our development, and this helps to explain some of the reasons why we are so deeply impacted when a sibling dies.
We develop our self in relationship to others, and our siblings are a kind of mirror. When they die, we lose a relationship that provided an essential reflection of who we are and who we might become. Children whose sibling has died need to have a place for their ongoing thoughts, feelings and connection to the dead throughout their lives.
For children who never knew their dead sibling, this affirmation of their connection to the lost one has a different quality but is no less important. While for these children the links are not made up of memories of a relationship, they are important symbolic representations of the self through the lens of the grief that came before.
For both groups of children, those who knew their dead sibling and those who did not, stories about the lost child help to make sense of who they are and of their place in the world.
We can all play a part in making space for children whose sibling has died to bear the unbearable – by offering solace in the form of genuine inclusion and by breaking the silence that can turn pain into suffering.
By Matt Pickles Maths, science, history and death?
This could be a school timetable in a state in Australia, if a proposal by the Australian Medical Association Queensland is accepted.
They want young people to be made more familiar with talking about the end of life.
Doctors say that improvements in medicine and an ageing population mean that there are rising numbers of families facing difficult questions about their elderly relatives and how they will face their last days.
But too often young people in the West are not prepared for talking about such difficult decisions. There is a taboo around the subject and most deaths happen out of sight in hospitals.
Pupils might have reservations about lessons in death education.
But the Australian doctors argue that if the law and ethics around palliative care and euthanasia were taught in classrooms, it would make such issues less “traumatic” and help people to make better informed decisions.
Queensland GP Dr Richard Kidd says young people can find themselves having to make decisions about how relatives are treated in their dying days.
“I have seen people as young as 21 being thrust into the role of power of attorney,” he says.
Their lack of knowledge makes it a steep learning curve in “how to do things in a way that is in the best interests of their loved ones and complies with the law”, he says.
He says the taboo around death means that families usually avoid discussing until it is too late. Most people do not know how their relatives want to be treated if the worst happens.
“So we need to start preparing young people and getting them to have tough conversations with their loved ones,” he says.
“Death lessons” could include the legal aspects of what mental and physical capacity means, how to draw up a will and an advanced care plan, and the biological processes of dying and death.
These topics could be incorporated into existing subjects, such as biology, medicine, ethics and law.
Dr Kidd says education around death would help countries like Australia, the US and the UK follow the example of Mexico, where death is an important part of the culture and even celebrated in the Day of the Dead festival.
He gives the example of Ireland, where he says wakes held after a death can be “joyous occasions”.
Introducing a culture of openly discussing death could even change where we die, according to Dr Kidd.
The vast majority of Australians die in hospital, even though many people say they would rather die at home with their family around them.
“Only 15% of people die at home but in the case of many more people, they could have died at home rather than hospital if there had only been a bit of preparation,” says Dr Kidd.
Matter of life and death
A hundred years ago it was very normal for people to die at home. but modern medical technology allows life to be prolonged in hospital, even though the patient might not have great quality of life.
“People may decide that at a certain point they want to be able to die at home in comfort rather than being kept in hospital,” he says.
The proposal for lessons in death has now been put to the Queensland education authorities and Dr Kidd hopes the message reaches other parts of the world.
“Our main aim is to get young people to start having those conversations with their parents and grandparents to learn more about how they want to die so that they know the answer when they need that information in the future,” he says.
“It should be seen as a positive and proactive thing – information and knowledge can be really empowering to people.”
So perhaps this is something to bring up over your next family Sunday lunch.
It might not be an easy conversation but it could be a matter of life and death.
My friend Jacqueline Zinn was diagnosed with glioblastoma, a brain cancer, in 2013; she died 18 months later, at age 56, leaving behind a husband and four kids. Jacquie was a triathlete who knew a thing or two about endurance, and she managed her treatment — surgery, radiation and chemotherapy — with the same skill and organization she had brought to her work as a project manager for a drug company. Once she realized that she had only weeks to live, Jacquie began planning for the next chapter: her death and its aftermath.
And so “every night for weeks she wrote letters to our children,” her husband Doug recalled. Jacquie wrote multiple letters to each child, to be opened at different life milestones. Jacquie wanted to be “present with her kids,” he said, at each of those important moments
for what I jokingly call “The End” is not for faint hearts. War hero John McCain is said to have been disciplined and firm as he planned his funeral over the past year, including the singing of the Irish ballad “Danny Boy.” But few of us have that strength. Recently divorced, I needed to rewrite my will and my medical power of attorney as well as a host of other financial and medical documents. At almost every turn, I found myself crashing head-on into the wall of denial. Just last week, my attorney begged me to acknowledge that I was at least receiving her emails, even if I couldn’t respond to them. “Yes,” I replied, tersely. All this resistance, and I’m not suffering from any terminal condition.
That’s why Jacquie Zinn’s letters to her children seem heroic to me. After all, she did have a terminal diagnosis when she sat down to write what ended up being more than a dozen letters to her children, ranging in age from 11 to 21, and she knew her time was short. I first heard about the letters at her memorial service in 2013. This past spring, working on a book about death and dying, I reached out to her second-born son, Jerry, who was writing about the loss of his mother, to ask if he’d be willing to share his letters from her. He’d already gotten two — one soon after her death and one when he graduated from college — and after some hesitation, he said okay. Now 24, Jerry will get the final letter when he marries.
“The letters my mother left me are among the most precious gifts I possess,” he told me. “She diligently took the time, the very limited time, as her life was coming to an end to sit down and think about her children’s futures.”
So one day, in perfect cursive penmanship and blue ink after her oncologist told her she had only weeks left, Jacquie wrote her first letter to Jerry, then age 19, to be opened after she died. Here is a portion of it:
“Dear Jerry, my budding film-maker,
“I know you have a lot of emotions running through you, as I did when my father died, but I was much older than you at the time, so I really can’t begin to truly comprehend what you are feeling. I am so incredibly sorry that I had to die while you are so young and I assume it sucks for you. Perhaps you can use some of these emotions and feelings in your upcoming work(s), assuming you continue to pursue film.
“Let me assure you that I did absolutely everything I could to stay alive for as long as possible. I know you realize that having been with me at many of my treatments or tests. Plus the acupuncture, tons of praying I also did. But for some reason I just didn’t make it as one of the chosen ones to be cured. But because of what I did I’m sure I lived much longer than if I hadn’t been in good shape to begin with.
“I am incredibly proud of you for everything you have done in your relatively short life. I will be watching over you every day to see what new and exciting things you will accomplish — regardless of what occupations(s) you pursue over your lifetime.
“Do your best to support Dad and your siblings, especially during this first year as it will be the hardest for everyone. I remember that from when my father died. Time will certainly help, but it takes a long time to focus on the happy memories while the sad thoughts are more immediate and closer at hand.
“I had many fantastic years on earth, more than a lot of people, hence, I have no complaints. I survived a melanoma, car accident in the mountains of West Virginia with Uncle Jerry, car accident in Durham. So I have already lived many lives and I was extremely grateful for each and every moment. Try and live your life that way and you will be a happy and fulfilled human being.
“I love more than you will ever know, my dearest Jerry.
On the day Jerry graduated from the University of North Carolina at Chapel Hill in 2016, Doug handed over letter No. 2, written with the same pen, on the same type of note paper.
“My sweet dear Jerry,
“Well — this is it — a big milestone in your life — college graduation! Congratulations. I am so incredibly proud of you no matter what your major or minors. I know you made it worthwhile and got just exactly what you wanted to out of the experience. I know you learned an incredible amount about subjects and probably an even greater amount about people.”
Jerry said that at various times during college he had considered dropping out, but “knowing that I would never receive that letter if I did not graduate was a very strong influence in keeping me in school. The letter was a motivation for which I will be forever grateful.” Knowing Jacquie as I did, I’m certain that was part of her master plan.
In the second letter, Jacquie signs off with these words: “I am watching over you all the time, or at least I hope I can do that! Congratulations, again. Enjoy this fabulous day and all the celebrations around. Big Hugs and Kisses! Much Love, Mom.”
What a gift, an eternal gift, I thought as I read and reread the two letters. More than anything, I silently bowed in amazement, understanding how Jacquie had faced her own version of “The End.” Doug reminded me that she’d written her letters while in a wheelchair, paralyzed on one side.
With Jacquie’s example in mind, I finally sat down and read the pile of documents my lawyer had sent to me, realizing that my denial served no purpose. To my surprise, I found comfort in taking care of that necessary business — once done. I’d like to think that was something Jacquie felt, too, as she sent her missives into the future.
When his grandfather died in the emergency department of a Hobart hospital, Andreas was by his side.
“I was really frightened.”
It was Andreas’s first experience of being with a dying person and it made him anxious.
“As his breathing slowed down and he was taking less and less breaths, I was worried about how I was going to feel when he didn’t take any more,” he says.
“And then he had one final really deep inhale and exhale, and it was fine.
“I wasn’t panicked at all. I thought ‘Oh, it’s not weird’.
“Death isn’t weird at all, really. It’s quite normal and kind of OK.”
The idea of sitting with someone who’s dying, particularly when they’re someone you care about, is something many of us find overwhelming.
What’s going to happen? Should you talk about the football? Ask them what they want at their funeral? How you can make granddad feel more comfortable?
We asked a range of people, who regularly spend time with those who are at the end of their lives, to share what they’ve learnt about being with someone who’s dying.
When should I visit someone in hospital or hospice?
Hospice volunteer Debra Reeves says her first bit of advice is to find out when you’re allowed to visit a hospital ward or facility.
Hospital wards often have compulsory quiet hours when no-one is allowed to visit, and those hours are often different from ward to ward in the same hospital.
Check in with a nurse, or someone who’s been there a while, to find out if the person you want to see is up for visitors. The same goes for visiting someone in their own home — always check if it’s a good time for you to be there.
Should I bring food, photos or mementos?
Again, check first. Ask what the rules are at the facility beforehand, or ask the person whose home it is.
Smells can be strongly linked to memories, so if you know your grandma, for example, always loved the smell of roses, take them in.
End of Life Doula Leigh Connell recommends not wearing strong perfumes as they can be overwhelming.
Bringing food is often one of the first things we think of as a way of comforting someone. Depending on the situation, the person might not be able to eat something you bring, but the gesture can still be appreciated.
“If you know they like the smell of mandarins, take mandarins, even if they don’t get to eat them,” Leigh says.
Meaningful photos and items can be comforting for the person, but don’t take in too many things and make clutter.
What should I say?
Not knowing what to say is one thing many people in this situation worry about.
Those who spend a lot of time with the dying all tend to say the same thing — you don’t need to say anything.
“Don’t say a lot. Let them talk,” Maria Pate from Hospice Volunteers says.
“Or let the silence be there.”
Launceston priest Father Mark Freeman says often simply being in the room can be enough comfort for the person.
“Often that presence is a reassurance to them that things are all OK,” he says.
If being silent and still is difficult, you could take something with you to keep yourself busy.
Leigh’s suggestion is to try something you know the person liked doing — playing cards or knitting. Even if you’re not good at the activity, it can make a connection.
Andreas’s advice is to be open and admit you’re scared.
“If you’re not comfortable talking to someone who has a terminal diagnosis, maybe just say, ‘I’m having trouble with this’,” he says.
Should I hug them if they look frail?
Giving a loved one a hug is often the quickest way to let them know you care.
But if you’ve never hugged your uncle before, don’t feel you have to.
Though it can be intimidating when someone is particularly frail, a gentle touch of the hand can bring a lot of peace.
Maria recommends a very gentle hand massage as a way of making connection and comforting someone.
Father Mark agrees.
“This lady was fairly well out of it, I went to talk to her, [took her hand] and she opened her eyes and looked at me — and had never met me before — and said, ‘Oh Father, thanks for coming’,” he says.
Again, it’s a good idea to ask for permission before touching someone. They might not be in the mood, or might be experiencing pain and not want any touch.
I think they’re dying now. What do I do?
Until you’ve gone through it, none us really know how we will react if we’re there at the time someone’s life ends.
Father Mark’s advice to families he visits is to “embrace the reality” of what’s happening and allow themselves to feel.
“They don’t have to panic [about the fact] that they just want to cry, or they’re so frustrated and they’re sad and hurt, and angry even,” he says.
“All those things can be a part of it.”
Father Mark says he encourages families to stay in the room if possible and be a part of what’s happening. Often what’s happening is not much at all.
Debra was with a family in an aged care facility when their loved one was dying.
“They went straight into storytelling,” she says.
“He was already unconscious. His fingers were already turning black.
“They held vigil, they talked around the bed. They used his name a lot and they talked to him.
“They gave him the most beautiful farewell. It was lovely.”
No-one is dying yet. But can I be prepared when it comes?
Sometimes we don’t get any opportunities to sit with someone before they die — death can sometimes come when no-one is expecting it or ready for it.
Spending time with strangers who are dying has given our interviewees a sense of wanting to make sure they and their families are as ready as possible for that moment.
Their advice is to think ahead now.
“I’m going to make that advanced care directive, I’m going to write that will,” Debra says.
“And I’m going to resolve those relationships so that when I am on my deathbed, I’m at peace. And my family can be at peace as well.”