Surviving the Death Talk With My Kid

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The first time death came up, my son was asking about an old photo of my dog Jupiter. Jupiter, an American bulldog I rescued from L.A. just before my now-husband and I moved in together, died just a couple of months before my son was born. For several weeks I cried, unmoving, on the sofa. Agonizing over my loss and worried that my joy about giving birth was being overshadowed by my sorrow, I was nervous that heartbreak was seeping deep into my bones.

When he asked, I was so excited to tell my son, who was 4 at the time, all about this amazing dog’s life. It turned out he was far more interested in his death.

Like so many other hard conversations we’d had before, I initially tried to be as matter-of-fact about dying as I could be. I described how Jupe had been in a lot of pain, that the doctor said he was likely very ill, and that the kindest thing we could do for him would be to relieve him of that pain as peacefully and quickly as possible. “What was he feeling when he died?” my son asked. I wasn’t sure how to answer. In that awful, quiet moment, I only knew how I felt, and I was shattered. So I told him truthfully that I didn’t know what it feels like to die, but as I’ve done a million times before with things I’m not sure of, I promised we could get some books from the library and try to find out. But I knew deep down he wasn’t interested in hypotheticals and esoteric explanations about death. He wanted to know it, to see it up close and poke at it in the same way he investigated the bugs in our backyard.

The books at the library were unsatisfying, but he didn’t have to wait long to find out what the real thing felt like. The next year for our family was anchored by death, and the “what ifs” were left far behind.

Just a few months after our conversation about Jupiter, my husband’s father died. He flew home to be with his family in the very darkest part of the morning, and I sat up waiting for the sun to rise, hoping the light would help me make sense of what was happening, both for me and for the kids. My daughter was just a toddler, but my son — he was that very curious, very aware 4-year-old who would wonder where Daddy had gone and why.< This time I didn’t feel the need to explain as much; I just let him see for himself how death reshapes the room as my grief filled our tiny home like my tears were a million heavy glass balls. Loss was no longer something atmospheric, it was grounded by this now-empty hole in my husband; it became a window through his heart that he tried to hide but couldn’t. Now that death was suddenly tangible, we started talking about it a lot more, but it wasn’t until my mother-in-law died eight months later that the real, unraveling questions about it came. “Does everybody die?” Yes. “Will you and Daddy die?” Someday, yes. “Will I die?!” Yes, but … “When?” Not for a long time. “Is there anything after we die?” I don’t know.

Those were hard. I wanted to tell him the truth — I think kids are owed at least that much. My husband actually had to stop me from answering “When will I die” with something a little too honest. I just felt he deserved at least my attempt at the full picture of what it means to be alive, of the true price of this incredible experience. That a long life is not promised, it’s only what we hope for, and when and how we die is something no one knows. That death is arbitrary and often meaningless, and how finite our lives really are. Would I be denying him something fundamental by not making all of those things clear? Or was it actually cruel to burst that bubble of innocence for a kid who adamantly believes in Santa and the Easter Bunny? So instead I told him how lucky we are that before we die we get to taste mangos and read our favorite books. That we get to swim in the salty ocean and collect smooth, green glass on the beach.

I worried a lot that first year if I’d been too forthcoming. I didn’t want him to feel burdened by this idea of loss, and I didn’t want him to be afraid. But I also wanted to offer an explanation for why it sometimes felt like the roof of our house was sagging under with grief. I remember when my own dad’s dad died, I was quite a few years older than my son, but my parents shielded my sisters and I from what was happening. All we knew was that suddenly everything felt different around the house and our once stoic dad was felled by a pain we couldn’t understand. I thought and still do think when the emotional tenor of the household changes so dramatically and instantly, it’s important to let everyone know why. Especially since the aftermath of death can feel like a punctuated silence. You’re not sure what to say or how to say it; grief can feel invisible, so naming it, talking about it is a necessary flare to send up, to be clear that this house is in mourning.

I reminded myself of what a privilege it is to watch each other grow and that in the inevitability of death is also a promise to relish life.

Sometimes it felt like he was prodding at us like a couple of worms he’d dug up, seeing which questions would make us recoil or squirm. He often recited that his grandparents had died like it was an animal fact or something he’d learned at school, as a reminder to himself that yes, something had changed this year, we really were different.

>The next summer, my son got really into space. We started talking about all the different galaxies and planets and stars, the bigness of everything around us and the smallness of us. And I told him, a few weeks after the memorial for his grandparents, that he, too, is made of stardust, that part of what’s out there is also in both of us. He loved the idea of being a part of something so huge and the thought that when you died, you might still leave something behind. I knew he’d been seeking that kind of comfort since our very first conversation about it, but I couldn’t promise him something I didn’t know to be true. In stardust though, I was finally able to say with confidence that after we die, we don’t just disappear.

It’s been a couple of years now, and we don’t talk about death as frequently. Some light has come back into our house, and I’ve noticed that my son isn’t as scared of the idea anymore. He understands how momentous death can be, but along the way, because we always answered his questions openly, honestly, and with care, it has become something normal. It’s as much a part of life as anything else, and he’s seen that firsthand now. The only thing that has really changed is that he won’t let me kill bugs in the house anymore because he says they deserve a long life too.

Complete Article HERE!

‘I see the world through corpse-colored glasses,’ says popular mortician, author and YouTuber Caitlin Doughty

— Caitlin Doughty will be in Fargo to speak at Thursday’s Humanities North Dakota event, A Brave Conversation About Death.

Author and YouTuber Caitlin Doughty incorporates humor and history to discuss death and the funeral business.

By John Lamb

When she was eight years old, Caitlin Doughty saw a child fall to its death at a shopping mall and was immediately ushered away and encouraged not to talk or think about it.

“That was a pretty defining moment of my life. I was scared of death,” Doughty says. “We didn’t have the vocabulary for it, the safe area to hold fears. I just had to deal with it.”

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Caitlin Doughty’s first book, “Smoke Gets in Your Eyes and Other Lessons from the Crematory”.

She may have not had the means to express her questions and concerns as an 8 year-old, but 30 years later she’s written three books and created a popular YouTube series all about death.

The mortician, author and YouTuber is the guest of Humanities North Dakota for a sold-out event Thursday night at the Avalon Event Center.

So what is, as the event is called, a “Brave Conversation About Death”? Doughty says she will come warm up the crowd, plant some food for thought on the topic, then leave the stage to let the audience talk among itself about death. She’ll then return to the stage and follow-up with a discussion.

“If you grew up in America, we don’t have death literacy, a safe way to talk about death. We were never taught how to do it,” she says, though she adds that over the last decade, things have gotten better.

“With the internet, people are not comfortable not knowing something,” she says.

In the mid-2000s she wanted to learn more about the funeral industry and got a job in a crematory then attended school for a mortuary science program and graduated as a certified mortician.

Her real work had just begun. Doughty saw things in the funeral industry that could be changed and started The Order of the Good Death, which advocates for reforming attitudes and practices around death, funerals and mourning.

In 2012 she started the YouTube series “Ask a Mortician,” which features her addressing questions people may have about death and funerals in an often entertaining way. The show quickly attracted a following among the general public and now has 1.96 million subscribers, thanks to episodes like “Morbid Minute: Coffins vs. Caskets” and “ Preparing Severely Decomposed Bodies for a Viewing”.

Between the YouTube videos and her books, “Smoke Gets in Your Eyes & Other Lessons from the Crematory,” “From Here to Eternity: Traveling the World to Find the Good Death” and “Will My Cat Eat My Eyeballs? Big Questions from Tiny Mortals About Death” Doughty has developed a following. She’s heard of people dressing like her for Halloween (“The hair is low hanging fruit,” she says, referring to her signature dark bangs) and even had a drag queen parody her in a video.

“I think I have such a specific advocacy that there’s not a cult of personality,” she says, adding that followers who share her stance on funeral reform are called “Deathlings”.

Still, the segments drew criticism from the old guard in the funeral industry.

“There was discomfort and anger that I’m doing it in this medium and talking about a different future for the industry,” Doughty says. “Most funeral directors believe that the way they provide for the families is the right way.”

But Doughty says changing some practices can help us have a better experience with death and mourning. In particular, she feels the family should have the option to be more involved, mostly by spending time with the deceased.

“For so long we’ve been trained to call the funeral home as soon as someone dies so they can take the body away,” Doughty says. “In reality, death is not an emergency. Your mom is dead now and will still be dead in two days. You’re allowed to take the time you need to process. Being present with a dead body is the simplest and scariest thing to do, but without fail people have an incredible experience.”

She adds that with the exception of an extremely rare case like someone dying of Ebola, “it’s perfectly safe to be around the dead.”

People may wonder what those in the funeral industry were like as kids and Doughty says she wasn’t so different from others her age, though she was a bit of a goth kid.

“A lot of funeral directors held funerals for their pets. That wasn’t me. I wasn’t morbid. I wasn’t Wednesday Adams,” she says. “I was always interested in death as a cultural thing. I see the world through corpse-colored glasses.”

So what does someone who spends all of their time talking about death have planned for her own funeral? While she’s made some plans, she’s still undecided about what will happen to her body. For years she’d wanted a simple, green, or natural burial, to be wrapped in a sheet and buried in a hole in the ground to allow for easier decomposition. After learning more about the practice of human composting, she’s becoming more interested in that.

“I definitely want people to spend time with my dead body in my own house,” she says. “Put flowers on my body, have something to eat or drink and just hang out with me.”

Complete Article HERE!

How to talk to your kids about Death

— An age-by-age guide

Talking to your child about death can be daunting, especially when you are also grieving.

By Kelly Fradin

As a pediatrician and a parent myself, I often hear from families in times of need. A child’s beloved grandparent died after a struggle, a child’s father died in an accident, a child’s teacher or friend died unexpectedly, or even a beloved pet dies, and I get a panicked call.

As parents, we want to protect our children, but we also want to raise them to be prepared for life’s realities. While talking to kids about death is hard, it’s important. And we can explain death in a way that’s developmentally appropriate while minimizing the trauma and fear our children experience.

Mom talking to daughter, both somber

Get ready to talk to your kids about death

Before diving into a discussion, consider your own emotional state. Are you feeling ready to discuss the death? Do you have all the details yet? While you will never look forward to sharing upsetting news with your child, it’s important that you feel prepared. 

On the other hand, this isn’t a talk you can put off forever. Even if they can’t explain it, a child knows when there has been a tragedy. Nonverbal communication, like body language, distractedness and tears, cannot be hidden from our observant children.

And kids have big imaginations. It’s better to tell them the truth than to let them imagine the worst.

Get help if you need it

Sometimes a grieving parent is not in a mindset to support a child’s needs. If you are in this difficult space, ask your community to step in and care for your child until you’re better able to do so. Prioritizing your own well-being in these moments is one of the best things a parent can do.

Don’t be afraid to cry

Many parents fear falling apart in front of their children and showing their grief. I think this fear is largely unfounded. We want our children to know that big feelings are okay. Crying in front of your child will not traumatize them.

In fact, allowing them to support you in your sadness can be helpful because it’s an opportunity for connection.

Choose your words thoughtfully

When you are ready to talk to your child, choose your words carefully and do not hesitate to say you’re not sure. We don’t want to use euphemisms for death like “sleeping” or “crossing a bridge” that might confuse a child.

We also want to reinforce a child’s sense of safety and anticipate that they may need reassurance that they are okay and the other people they care about are okay.

Age-appropriate ways to talk about death

As we dive into considering death by age, also remember that children develop at their own pace and children’s cognitive and developmental stage may not match their chronologic age and that’s okay.

Mom talking to daughter, both somber

Children under two or children who are developmentally pre-verbal

Be upfront, even with toddlers

Children in this age bracket may not be able to fully understand death and loss. However, when someone in their orbit dies they still deserve to know about it, particularly if it disrupts their routine. Using short declarative statements “Nana is not coming because she died” and not going into too much detail would be advised.

Consider your spiritual beliefs

When your children are young, it’s a great time to consider your values and beliefs and discuss them with your coparent. If you are religious or were raised with religious beliefs, decide if you’ll be sharing those with your child.

Talk about death in general

Little ones can learn about death through nature. Dead plants, dead bugs, or even roadkill can be relatively benign opportunities to expose children to the concept of death.

Many parents try to avoid talking about death when it’s not an immediate issue, but it’s a lot easier for a child to confront the death of a plant or even an animal than the loss of a loved one or another human being. Talking about these kinds of deaths is a good way to introduce the topic.

Children three to eight

Prepare for lots of questions

Children in this age group can generally understand death and may ask a lot of questions. Developmentally, it’s normal for them to fixate on new information they’ve learned.

This can translate to a child who never used to talk about death talking about death a lot, even up to 10 times a day. This age group will also draw pictures or play games about death as a way to process this new knowledge.

Parents often worry that an ongoing focus on death is a symptom of trauma—and it can be. But thinking about death a lot when it’s a new concept or someone you care about has died—even for weeks—is also a normal adjustment reaction.

Younger children can have magical thoughts about death, that maybe it will be reversible or that perhaps thoughts can cause death. Sometimes hearing their thoughts can help us target what information we share.

Show them that it’s okay to talk about death

Many parents find their children’s questions about and focus on death difficult, especially when grieving themselves. As uncomfortable as it is, we want to teach our children that talking about death (or any hard thing) with their parent or supportive caregiver is welcome.

We may need to discourage talking about it in socially awkward situations such as telling strangers at the grocery store, but we do not want to teach them that death and anxiety about death are totally taboo. If we do, they may continue to have questions and worries about death and feel alone.

Talk about death in general

If a child this age isn’t experiencing an acute loss, it can still be a good idea to introduce the concept of loss, both to prepare a child for the inevitable experience or to build empathy and understanding.

Look at books like The Invisible String for kids under five. For older children, many movies and books have death involved in the storyline. This passive exposure is a safe way to start the conversation. Talking to your children about the deaths in books or movies may feel safer for them because of the distance, but still may trigger a lot of questions.

dad talking to son on a dock overlooking a lake

Children nine and up

Let them seek support from friends

Children in this age group may be nearly adult-size on the outside, but in some ways, their budding maturity can make them more fragile. They are less likely to ask a lot of questions and more likely to internalize a lot of worries.

Parents of children this age who grieve should also understand that their child may not come to them for support. Tweens and teens often want to spare their parent and look to their peers instead.

Make sure they have someone to talk to

If your child withdraws or doesn’t want to talk to you about the loss, the first question should be, “If you’re not talking to me about it are you talking to someone else?” Friends, parents of friends, teachers, coaches and school counselors can all be part of the team supporting your child’s grief.

Sometimes a heads up for these important people in your child’s community can help them to be more empathetic and receptive to supporting your child. It’s best to be clear about what you’re asking, “My child is grieving a loss, so I would appreciate it if you could check in with them.

On the other hand, privacy matters to children too and taking a break from thinking about their loss can be restorative.

For some children, it may be better to say “My child is grieving a loss and has a lot of people speaking with them about it. Please don’t feel like you have to say something or check in, but I wanted to let you know in case they bring it up or if you see something that has you concerned in any way.”

Give them a sense of control

Regardless of your child’s age, after you inform them of a loved one’s death, you want to leave them with feelings of safety and agency. What that means is acknowledging that while they may feel terrible, it’s okay to be sad and things will get better. There will be happy days and things to look forward to despite your tragedy.

To encourage a child’s feelings of control over the situation, sometimes a project like a memory box or a special card or photo for a loved one who may be hurting can be helpful.

For older children, advocacy can be healing in addition to potentially making positive change in the community, connecting with others who have lost loved ones for the same reason can make them feel less alone in their grief.

Every family’s take will be different

Undoubtedly every family is unique in how they consider loss. Our own upbringing, values, religion and culture will determine the words we choose. But death is universal and an inevitable part of life. When connecting with your child to teach them about death remember that there is no one perfect way to do it.

What’s important is to be authentic and connect with your child to talk about it in a way that makes sense to you. As with grieving adults, grieving children can have an unpredictable course, with holidays, songs, places, and memories often causing more sadness weeks or months after a death. Continued check-ins and connection can help a child feel safe and supported in these moments.

Death is an ongoing conversation

If you’re not acutely in a loss and still trying to teach a child about death, just as with other topics it’s often not just one conversation, but rather a series of small conversations where your children will learn and understand more.

Great resources for teaching kids about death

Complete Article HERE!

Rise in infant deaths hits Black families hardest, study finds

Black babies experienced the highest rate of sudden unexpected deaths in 2020 and nearly three times the rate of deaths among White babies.

BY

A new federal study highlights a striking racial disparity in infant deaths: Black babies experienced the highest rate of sudden unexpected deaths in 2020, dying at almost three times the rate of White infants.

The findings were part of research released Monday by the Centers for Disease Control and Prevention, which also found a 15 percent increase in sudden infant deaths among babies of all races from 2019 to 2020, making SIDS the third leading cause of infant death in the United States after congenital abnormalities and the complications of premature birth.

“In minority communities, the rates are going in the wrong direction,” said Scott Krugman, vice chair of the department of pediatrics and an expert on SIDS at Sinai Hospital in Baltimore.

The study found that rising SIDS rates in 2020 was likely attributable to diagnostic shifting — or reclassifying the cause of death. The causes of the rise in sleep-related deaths of Black infants remain unclear but it coincided with the arrival of the coronavirus pandemic, which disproportionately affected the health and wealth of Black communities.

“Evidence does not support direct or indirect effects of the … pandemic on increased rates of sudden unexpected infant death, except for non-Hispanic Black infants,” said the study, to be published in the April issue of the journal Pediatrics.

The study’s authors, who call for further research into their findings, point out that the pandemic exacerbated overcrowded housing, food insecurity and other stressors, particularly among Black families — potentially leading to less safe sleeping practices, such as bed sharing.

Before the pandemic, overall infant mortality — including diseases, accidents and injuries, and unexplained deaths had been on a downward trend in the United States. Some of that drop can be attributed to the enormously successful campaign launched in the 1990s to encourage putting babies to sleep on their backs, as opposed to facedown when they may re-breathe the carbon dioxide they exhaled or suffocate in soft bedding.

Tracking and understanding the causes of sudden and unexpected infant deaths on a national scale has been challenging in part because of different local practices of reporting and investigating the deaths. Data based on death certificates is notoriously inaccurate, and the pandemic introduced further complications, including shortening the time overburdened examiners could devote to investigating individual deaths.

The CDC’s Division of Reproductive Health has tried to address those problems by setting up monitoring programs in 22 states and jurisdictions across the country and by working with medical examiners and coroners to standardize reporting procedures. The new study draws on that research.

“This study is using good quality data, putting what some of us have been doing on a local basis on a national scale,” Krugman said.

In addition, a shift in terminology has complicated the picture. SIDS, or crib death, refers to the sudden death of an infant under the age of 1, usually during sleep and for unknown reasons, though often related to suspected genetic or environmental factors.

That term has fallen out of favor among some medical examiners and coroners who have replaced it with the broader term SUID, or sudden unexpected infant death under the age of 1. SUID refers to the often sleep-related deaths of babies in which the causes include suffocation from being caught between cushions of a couch or strangulation beneath a sleeping parent as well as SIDS and other unknown causes. About half of SUID deaths are SIDS deaths.

>“It’s a terrible situation,” said Richard Goldstein, director of the Robert’s Program on Sudden Unexpected Death in Pediatrics at Boston Children’s Hospital. “There is so much inconsistency in what these deaths are called. That’s not tolerated in any other area of medicine.”

On average, about 3,400 U.S. babies die suddenly and unexpectedly each year, according to CDC data.

To examine racial disparities, researchers chose to use the overall SUID rate, which allowed for consistent comparisons that were not affected by the different ways medical examiners report infant deaths.

In 2020, the SUID rate was highest among Black infants (at 214 deaths per 100,000 live births), followed by American Indian or Alaskan Native infants (at 205 deaths per 100,000 live births), and nearly three times the rate for White infants (75.6 deaths per 100,000 live births).

Understanding the causes of those deaths, many of which are unobserved, is key to preventing them.

“We don’t know how to prevent SIDS,” said Michael Goodstein, a neonatologist at York Hospital in Pennsylvania, who said research is examining factors such as brainstem abnormalities and respiratory problems. “But we should be able to prevent suffocation deaths.”

Sharyn Parks, one of the study’s authors and a senior scientist at the CDC’s Division of Reproductive Health, said there are two clear messages to take from the study — the need for researchers to examine factors like poverty that make some families more vulnerable to poor health outcomes as well as the need for parents to remember the practical steps they can take.

“We want to continue emphasizing safe infant sleep practices, putting babies on their backs and removing all soft bedding,” Parks said.

Once it is available, data from 2021 and 2022 should provide a clearer sense of the role the pandemic may have played in widening disparities between different racial groups.

“We are getting more and more a sense that poverty and multi-factorial issues are really important for being able to protect children,” Goodstein said.

Complete Article HERE!

Featuring death and grief in children’s books can equip them with skills to navigate emotional terrain

— We don’t need to overload young people with everything that adults carry, but we should be as truthful as we can for their age

By Nova Weetman

When I was eight, mum read me EB White’s classic, Charlotte’s Web. We took it in turns to cry. Hers were the tears of a mother fearing leaving her babies, and mine were the tears of a kid feeling everything for Wilbur the pig when his beloved friend Charlotte died.

When I was 10, Katherine Paterson’s Bridge to Terabithia broke my heart. Huddled under blankets, I read late into the night, between gulps of tears. I had to know if Jesse would survive his grief and guilt after his best friend, Leslie, drowned in the river.

The book also grapples with class and poverty, bullying and religion. An ambitious work, it won many literary awards. It has also been banned and challenged hundreds of times in American schools and public libraries. The reasons are complex but include the fact the book deals with death, witchcraft, swearing and atheism (Leslie doesn’t attend church).

Bridge to Terabithia was my literary introduction into the idea that a girl like me could die. Yes, it upset me, but it didn’t scare me or make me wary of living. Instead, it allowed me to feel the depths of sadness, anger and acceptance that Jesse feels.

As parents, we want to protect our children from experiencing unnecessary heartache. We want them to feel safe, loved and happy. The world is grim enough without handing them books that make them contemplate death. But dying isn’t something we can shield them from. They watch films, they talk to their friends, they lose grandparents and pets and sometimes even parents, and they understand that life isn’t forever, and that sometimes people can die too soon.

I believe that death, grief and other intense emotions have a place in children’s fiction. We must trust authors and illustrators to know how to present these experiences to children in age-appropriate ways. We don’t need to overload young people with everything that adults carry, but we do need to honour them by being as truthful as we can for their age, and we can do this by leading them gently, and by giving them hope that things can change, or be survived.

Now more than ever, in the light of everything that is going on in the world, we need to equip children with the skills to navigate emotional terrain – not protect them from it. Books can help children to process emotions while feeling safe.

My latest middle grade book, The Jammer, is about a 12-year-old girl called Fred whose mother has died before the story starts. It is not about her death, it is about Fred’s journey to finding a new family of disparate people, and about her realising that it is OK to feel sad and happy and everything in-between. It is also about love, hope, friendship and joy, because those are often the feelings that accompany the grief and the loss.

We can explore death in children’s books through humour, fantasy, ghost stories and realism. And the beauty of books is that children will take what they need when they are reading. If they don’t understand something, then they’ll skip that bit or simply close the book.

In The Jammer, Fred doesn’t talk about her mum dying. She won’t discuss it with anyone, not even her dad. And then slowly she starts to let her step-uncle Graham share little moments of her grief because his mother died when he was young, and he understands what it feels like to mourn.

When my kids lost their dad, they didn’t want to talk about it. They didn’t want to be known as the kids with the dead dad when they went back to school after the lockdowns ended. So much so that six months after he had died, some of my daughter’s social group still didn’t know.

My teenage son made a new friend this year. A girl whose mum died when she was two. They never talk about death. Or losing a parent. They just understand.

I think books are like that too. Characters can seem like our best friends when we are kids. They don’t have to be the same as us. They just have to make us feel like we belong. Like we aren’t alone. Like we are understood.

Not every kid will want to read about a parent dying. It won’t happen to most children in their young lifetimes. But it does happen to some. And I think it’s important to help children understand the incomprehensible so they can be more empathic and kinder. Books are a way we can teach young people how to understand the world is not just theirs. It is not just one experience. But many.

And I think we owe it to young readers to be honest, and not to pretend things are easy just because they are children. Regardless of the genre and of the tone of our stories, books are a place children come to hide, to learn, to laugh, and sometimes even, to cry. And when they finish a book, it might stay with them and change their world, just a little, like Wilbur the Pig did for me.

Complete Article HERE!

Anticipatory grief: How to cope if you’re struggling to watch a loved one age

— Here, experts break down anticipatory grief, an under-talked-about and all-too-common experience of watching loved ones get older.

By

It can creep up on you slowly or happen in a single moment, but anticipatory grief finds its way into the lives of most adult children or caregivers at some point. And the confusing part: Most people don’t know it when it hits them. Unlike grief after loss, which gets its fair share of air time, anticipatory grief is relatively unheard of, making it difficult for folks to recognize—  and process — when they’re experiencing it.

“Anticipatory grief is a process that occurs prior to an expected loss,” explains Alicea Ardito, a licensed clinical social worker in private practice with Loudoun Adult Counseling and Northern Virginia Older Adult Counseling. “Often, anticipatory grief is associated with the loss of a loved one to death, but the definition has expanded to include many other types of losses as well.” (Think: Cognitive decline.)

Whether you’re experiencing it now or want to be prepared, here’s what experts want you to know about anticipatory grief. 

What is anticipatory grief?

A viral tweet about anticipatory grief sparked a recent conversation, but the concept isn’t new — or rare. “Anticipatory grief is a very common experience for caregivers and/or adult children,” says Iris Waichler, a licensed clinical social worker in Chicago and author of “Role Reversal: How to Take Care of Yourself and Your Aging Parents.” “It references watching the physical, cognitive, behavioral and emotional changes you witness in a loved one. In a sense, you lose them twice. Once you have seen these changes over time, and the second time is at the moment of death.”

What triggers it?

While a concrete moment, such as a diagnosis or obvious cognitive or behavioral change, can set off feelings of anticipatory grief, there isn’t always one particular event that prompts it.

“Anticipatory grief can be triggered by many things,” explains Ardito. “It may be the realization that a loved one is nearing the end of their life, witnessing the process of a physical or cognitive decline or observing the progression of a life-limiting illness.”

This moment or phase then can then take you to a place where you begin to imagine life without them, Waichler notes. “It sometimes becomes an unconscious way to prepare for their death.”

What does it look like?

“Anticipatory grief involves complicated and complex feelings similar to those feelings associated with grief after a loss,” says Ardito. While each person will experience it differently, many will have some, or all, of the following feelings, according to Ardito and Waichler:

  • Depression.
  • Anxiety.
  • Anger.
  • Sadness.
  • Disbelief.
  • Denial.
  • Dread.
  • Fear.
  • Shock.
  • Guilt.
  • Helplessness.
  • Hopelessness.
  • Numbness.
  • Dissociation.
  • Confusion. 

“There also may be other emotions involved, such as gratitude or acceptance,” notes Ardito.

“While there may be empathy for the parent as they decline in health, there may be residual feelings, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings.”
— ALICEA ARDITO, A LICENSED CLINICAL SOCIAL WORKER

For Carly Nguyen, a mom of two who runs the blog Little Voice, Big Matter, anticipatory grief presented in the form of wanting to make sure she provided closure for her father before he passed. “When I accepted that there was nothing else that could be done for my father, who was dying of cancer, I felt this great sense of urgency to let him know that we would all be OK,” she explains. “I wanted to be sure I eased any burdens he might be feeling and reassure him that he had done a fine job as a parent and a husband. I felt like I needed him to leave this world with that peace of mind.”

For adult children who have a contentious relationship with their parents, anticipatory grief can be even trickier. “It is not uncommon to feel conflicted about the relationship,” notes Ardito. “While there may be empathy and compassion for the parent as they decline in health, there may be residual feelings about the relationship, such as anger, abandonment, confusion or frustration. Luckily, there is space for all of these feelings. A person does not have to choose just one way to feel.”

Contending and actively dealing with anticipatory grief is a personal process, but here are a few ways to approach these unique and often confusing feelings, according to Ardito and Waichler:

Talk it out.

According to Waichler, regardless of whom you speak to, talking about your feelings regarding the impending loss is key. “If appropriate, and the person who is dying shares a willingness to discuss their feelings about their impending death, it can create an intimacy and environment to help both parties begin to cope,” she says, adding: “Many people feel regret for not saying all they wanted to a loved one that is dying.”

If a conversation with the aging or ill person isn’t on the table, Waichler recommends finding “another outlet to discuss tumultuous feelings.” She offers the suggestions of talking to a “therapist, trusted friend or family member, an online or in-person support group or a spiritual or faith-based leader.”

The main take-away: Don’t self-isolate and be alone. Says Waichler: “People tend to do this when depressed and it only makes healing more challenging.”

Get inquisitive.

Ardito notes that when a realization occurs that there may not be much time left, it’s a good time to inquire about their life (even if you already know). “It can be helpful to ask questions about family history or express interest in hearing a parent retell favorite stories,” she says.

This also was a recommendation when the topic of anticipatory grief recently came up on Twitter:

Get intentional with your time.

It sounds cliché, but it’s true: Quality is more important than quantity. “It can be very helpful to focus on the quality of time spent rather than the limited quantity of time left,” says Ardito. “Try to become fully present, even in difficult moments.”

In order to make the most of your time with a loved one, no matter how much is left, consider formulating a loose plan or general ideas. “Spend time thinking about how you want to spend your remaining time together,” Waichler suggests. “What can you do to help make this time more meaningful and bring quality and purpose to both of your lives?”

“Think along the lines of creating beautiful moments and memories together,” Waichler continues. “It may be a walk in a beautiful park, spending time in a garden, looking at photos of beloved family and friends and reminiscing or sharing favorite movies or music together.” 

Set boundaries, if need be.

“Anticipatory grief can jump-start long-delayed discussions about past unresolved conflicts due to the nature of the circumstances created by impending death,” notes Waichler — but this isn’t the case for everyone, and there’s no guarantee that conversations or interactions will end on a high note.

“If your relationship with the person dying is conflictual or strained and you see no room for healing, identify another person who can step in to be the primary caregiver, if you’re serving in that role,” Waichler says. “You may need to set limits on the frequency and nature of your contacts if you see them ending in conflict. Identify tasks that can be helpful to the person, but that won’t raise conflict. Examples may be helping with meals, helping with laundry or chores or helping to coordinate a caregiving team.”

“Some people experience anger or irritability towards the person who is dying. It is important to recognize and identify the source of these feelings.”
— IRIS WAICHLER, A LICENSED CLINICAL SOCIAL WORKER

Accept your feelings — no matter what.

One of the most important things you can do during such a fraught time is to “acknowledge and accept your feelings, whatever they are, without self-criticism or judgment,” according to Waichler, who notes that “journaling can be a good outlet to process your feelings.”

“Some people experience anger or irritability towards the person who is dying,” notes Waichler. “This may be because you are angry they are leaving you or because of the physical and emotional demands placed on you if you’re caregiving. It is important to recognize and identify the source of these feelings.”

Take care of yourself.

While your aging parent or loved one may be your number one priority, it’s important to “engage in self-care activities during this time,” says Waichler.

“Make time for yourself to get enough sleep, eat healthy meals and exercise,” she says. “Additionally, try mindfulness activities, such as yoga, meditating or praying to gain inner strength and calm. The stronger you are physically and emotionally, the more you can engage with a loved one in meaningful ways.”

Complete Article HERE!

End of Life Care for People with Developmental Disabilities

Why talking about this taboo subject with your loved one early on is important

Charlotte Woodward and her mom, Darcy Woodward

By Beth Baker

Planning for our own death or that of a loved one is difficult. According to a survey by The Conversation Project, 92% of us think it’s important to discuss our end-of-life wishes.Yet only one-third of us do so. 

For those with intellectual and developmental disabilities (IDD), those conversations happen even less frequently.

“Death in general is still a taboo subject,” says Dr. Kyle Sue, at the University of Alberta, who treats people with developmental disabilities of all ages. “For people with a disability, health practitioners don’t know how to bring it up, or they don’t know how much the person will understand. There’s a level of discomfort in trying to include them.”

IDD includes conditions that appear before the age of 18 that affect physical development, learning, language or behavior. Some conditions begin in utero, such as Down syndrome which is caused by an extra chromosome. Others are from a birth injury, such as cerebral palsy. One common disability, Autism Spectrum Disorder (ASD), likely has multiple causes and may not appear until after age one.

“I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it… I would flat out accept it. Maybe I’ll give my body to science.”

An estimated 1-3% of Americans have IDD conditions, according to Margaret Nygren, CEO of the American Association on Intellectual and Developmental Disabilities (AAIDD). Improvements in heart surgery and other advances have greatly extended the lives of many.

Most notably, the average life expectancy for people with Down syndrome is now 61, compared to just 25 years old in 1983. Children with cerebral palsy are also living longer. A study in BMC Neurology found that 80% of children with mild CP will live to be 58 or beyond. Although this is good news, it presents new challenges as individuals outlive their parents or other caregivers.

Diseases associated with aging, such as Alzheimer’s disease, are becoming more common, especially for those with Down syndrome. Some 30% of people with Down syndrome in their 50s have Alzheimer’s, and 50% of those in their 60s.

Having conversations about end-of-life wishes is important while the individual can communicate.

Nothing About Them Without Them

Charlotte Woodward defies stereotypes regarding people with Down syndrome and other disabilities. As is common in Down syndrome, she was born with a heart defect and has had four open-heart surgeries including a heart transplant — one of the few people with Down syndrome to receive an organ transplant.

Woodward studied sociology at George Mason University, concentrating on discrimination against people with disabilities in the medical system, and she is now only the third person with Down syndrome to be a registered lobbyist. She works to advance the Charlotte Woodward Organ Transplant Discrimination Prevention Act, introduced by Washington State Republican representative Jaime Herrera Beutler and California Democrat Katie Porter.

“Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

“I’m still in my thirties. I want to live my life to the fullest,” says Woodward, who is Education Programs Associate with the National Down Syndrome Society. Still, “I’ve thought about the end of my life. I know for a fact that I won’t be in denial of it. I won’t be angry or bargain. I would flat out accept it. Maybe I’ll give my body to science. And I would like to get my last will and testament in place and advance medical directive as well.”

Her mother, Darcy Woodward, 58, finds such conversations difficult. “There’s definitely a concern about the future among parents of children with disabilities. We’re trying to make sure things are in place to protect our children who will hopefully have long healthy lives. I try not to think about it, but I know it’s important.”

In the past, someone like Charlotte would not have a seat at the table when it came to planning her health care. But in the 1980s that began to change, explains Leigh Ann Kingsbury, a North Carolina gerontologist who wrote one of the first guides on end-of-life planning for people with IDD.

People with disabilities who receive Medicaid-funded services must have an annual plan for their care. “Up until the ’80s these planning processes were really perfunctory — professionals getting together and saying ‘here is what we think is best for Susie Jo’ in a highly patronizing, not culturally relevant manner,” says Kingsbury.

That began to change when advocates demanded that their voices be included. In the 1990s, the slogan “nothing about us without us” became a rallying cry in the disability community.

Advanced Directives

“People with IDD can and do create advanced directives for their care,” says Nygren. “The thing that’s different is they need some help discussing and thinking through the options, the way people without IDD can do it independently.”

But many medical professionals and caregivers are reluctant to include people with IDD in decision making. “I never met a person with IDD who didn’t understand the cycle of life,” says Nygren. “People aren’t automatically comfortable about it, but there’s awareness. People want autonomy and control over decisions that affect them. Actually, the most respectful thing you can do is to give them the opportunity to express their wishes.”

A person smiling at home. Next Avenue, developmental disabilities, end of life care
Charlotte Woodward

According to Nygren, the number of those with extreme intellectual limitations who cannot understand or speak is small, compared to the overall population of people with IDD. Even then, people who know them well know their likes and dislikes that can help inform care.

Dr. Brian Chicoine has been medical director of the Adult Down Syndrome Center in Illinois since 1992. The center was the first clinic to serve adults with the disability. He cautions that there is nuance about how and when you talk about death. “Our patients are so concrete. They can become so focused on the fact that they’re dying, they have trouble living,” he explains.

Many have a different understanding of time, he adds. For example, the parents of a patient bought cemetery plots for themselves and their son. “This was a very bright guy, but for the next five years we dealt with his depression,” as the young man focused on his death which was far in the future. “So we have to be careful with these conversations,” says Chicoine.

Barriers in the Medical System

Whether or not you have disabilities, having a good relationship with your primary care physician is important for having your choices honored at the end of life. But finding a doctor can be tough for those with IDD. Physicians often do not want to treat people with disabilities. An article in the October 2022 issue of Health Affairs entitled, “I Am Not the Doctor For You” about three focus groups of physicians across disciplines and regions of the U.S. found considerable reluctance and outright prejudice towards people with disabilities.

“Some participants … revealed negative attitudes … and commonly used outdated or ableist language (for example, ‘mentally retarded’),” according to the study. Some admitted that they had turned away people with disabilities from their practice. One reason is time constraints. Explaining medical issues to someone with an intellectual disability takes more time, yet doctors are reimbursed for a 10-minute appointment even if it takes 30.

“Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Pervasive “ableism” is common including in the medical profession. Many providers assume that a person with IDD has a poor quality of life. Such assumptions can have serious consequences. An article in a recent Journal of the American Board of Family Medicine entitled, “Ableism at the Bedside,” found that people with IDD had a higher risk of mortality from COVID-19 compared to others with similar medical problems.

In one case, ICU physicians repeatedly pushed for a “do not resuscitate” order to be in place for a woman with Down syndrome. Her primary care doctor and family refused. The woman went on to a full recovery.

Medical schools and residency programs offer little training to help providers feel more comfortable treating this population.

Sue begins end-of-life conversations when a patient he’s followed for years develops more serious symptoms.

“When I bring it up, I’m not saying, ‘Okay let’s talk about dying.’ I begin by asking what are they seeing? How is your child compared to ten years ago? How are things at home? For everyone who has serious health conditions, we do need to talk about planning for the future. As conditions change, it’s best to be prepared well ahead of time, rather than making difficult decisions in a crisis. I’ve found that families are quite receptive,” Sue says.

Palliative Care

If a person ends up in the ICU, communication can be very challenging. Palliative care specialists must assess their level of pain, for example, if they cannot converse. Treatment choices can be hard to determine, especially if there is no guardian or caregiver who knows the patient well. Guardians are typically family members, even if they have not been living with the patient. The staff of group homes who may know the patient best are usually not included in hospital decisions.

“No matter who the patient is, we always want to get as much information from a person based on what they do and don’t want, what they do or don’t value,” says 2021 Next Avenue Influencer in Aging, Dr. Jessica Zitter, a specialist in both critical care and palliative medicine at a public hospital in Oakland, California, and author of “Extreme Measures — Finding a Better Path to the End of Life.”

“The first principle is to try to elicit from a person the things that are important to them. Bring that information into their health care plan and medical decisions. Even a person who is very, very ill or who has a psychiatric illness or Down syndrome can say ‘Don’t do this to me.'”

Ultimately with a life-threatening illness, no matter the patient’s disability, “What we really need to be saying is, we’re not going to abandon you. We want to do what you want until the last moment. We’ll hold your hand,” says Zitter.

Supported Decision Making

Supported decision making is a process that helps people with IDD make decisions about important life issues. A team of family members, friends, neighbors, professionals or volunteers manages discussions to help the individual decide things about jobs, marriage or housing.

The process can also be used for end-of-life planning.

Darcy Woodward is exploring how to disband her guardianship and transition to supported decision making. She recognizes that Charlotte can make her own decisions. “I wouldn’t want guardianship to transfer to a stranger who would disregard Charlotte,” she says.

For parents of adults with IDD, such planning is critical, which is why The National Down Syndrome Society plans to publish an end-of-life guide. “It’s really about proactively planning for end-of-life care,” says Rachel Grimm, manager of health programs, aging and caregiving for NDSS.

“We want readers to recognize that having a backup plan and planning for the future are so important for happiness and sustainability. We’re encouraging families to find a lawyer to walk them through,” Grimm says.

Complete Article HERE!