Goodbye, Grandpa

– An expert guide to talking to kids about death during Covid

By Robyn Silverman

My daughter’s questions started after a family friend got sick with Covid-19.

“If people are sick, they can just give them medicine so they get better, right?” my daughter asked with the hopeful perspective of an 11-year-old. “They can just go to the hospital so the doctors and nurses can help them?”

The questions stemmed from a positive update my husband gave about his martial arts buddy, John R. Cruz, a first responder being treated at Holy Name Medical Center in Teaneck, New Jersey.

He’s one of the lucky ones.

Not everyone is as fortunate. We’ve already surpassed 124,000 Covid-related deaths in the United States and nearly half a million dead worldwide.

For adults, these numbers are shocking. For children, they are unfathomable. Some can’t even conceptualize the notion of a single death.

It’s natural for parents to want to protect children from the feelings of worry and distress we are experiencing during this pandemic, but decades of research underscores that being honest with children is the best way to mitigate feelings of anxiety and confusion during uncertain times.

Even young kids are aware of the changes in the emotional states of adults and will notice the absence of regular caregivers, including grandparents.

So how do we talk to kids about death and dying during the coronavirus crisis? These are tough talks, no doubt about it. Here are six guiding principles, with sample prompts and scripts, to keep in mind.

Assess what’s age-appropriate

While parents should always be honest about death, the information you divulge may differ in amount and depth depending on the developmental age of your child.

How do you know where your child falls? It’s a best practice to follow your children’s lead and answer their questions without volunteering additional details that may overwhelm them. If you don’t know the answer, it’s OK to admit it.

Children between the ages of 4 and 7 years old believe that death is temporary and reversible, punctuated by the fact that their favorite cartoon characters can meet their doom and then come back the next day for another episode.

Even after you explain that “all living things die” and “death is the end of life,” it’s normal for young children to ask, “When can that person can come back?” Be prepared to remind them, kindly and calmly, that “once a body stops working it can’t be fixed” and “once someone dies, that person can’t return.”

Older children grow out of this “magical thinking” as they enter tweenhood, questioning the meaning of death during adolescence, while often seeing themselves as invulnerable to it. They may want to talk with you about why someone has died and need guidance about which resources they can trust for valid information about coronavirus and Covid-related deaths.

Ask your children, whatever their age: “What have you heard about the coronavirus and how someone might get it? What do you know about what happens when someone gets sick from it?” Clarify the difference between the virus and the disease and explain who is at the highest risk for becoming severely ill from Covid-19.

Prepare yourself

A conversation about death, especially when you are reporting on a family member or close friend, is especially difficult. You don’t want to just blurt out the news without carefully considering your words. Give yourself some time to gather your thoughts and take a couple of deep breaths.

Ask yourself: Do I want another supportive adult with me while I deliver this news? Where in my home would be best to discuss this with my child? Should my child have a special toy or comforting blanket with him or her when we have this conversation?

Even though it’s best to discuss what happened with your child before someone else tells them, taking a few minutes to calm yourself down and be present is important for you and for them.

Explain what happened

If someone in your children’s world does pass away from Covid-19, be sure to tell them honestly, kindly, clearly and simply. Experts agree that parents should avoid euphemisms such as “went to sleep,” “we lost her” or “went to a better place” to avoid confusion.

Instead, you might say; “Sweetheart, remember Grandpa got very sick and has been in the hospital for the last few weeks? His lungs stopped working and couldn’t help Grandpa breathe anymore. The nurses and doctors worked so hard to try to make Grandpa’s body healthy again but they couldn’t make Grandpa better. We are so sad and sorry. Grandpa died today.”

Then pause and listen. You may need to repeat your words a second time as distress can make it difficult to digest information.

Give room for the ups and downs of grief

In a time of suffering, it can be difficult to know what to say. Honesty about your own emotions gives children permission to be open about their own confusion, sadness, anger and fear.

You might admit: “This is all so hard to take in, isn’t it? I am feeling sad, and I’m crying because I miss Grandpa.”

Don’t be surprised if some of your child’s feelings come out all at once, while others may peek out days and weeks after the death of a loved one. Be ready for the unexpected and know that, when children grieve, they may be crying one minute and playing the next. This is normal.

“Grief is not a linear process,” said Joe Primo, CEO of Good Grief, in an interview on my podcast, “How to Talk to Kids about Anything.”

Good Grief is a New Jersey-based nonprofit organization that provides healthy-coping skills to children grieving the loss of a family member.

“Grief is like a roller coaster. It’s up, down, all around. For kids and adults alike, every single day is different. And as the grieving person, you have no idea how your day is going to unfold.”

Answer questions

Many children will ask for more information and want to know why their loved ones didn’t survive. Reiterate that your loved one had Covid-19 and the medical team worked very hard but the disease made it so the body could no longer work. You might tell your child about complications such as asthma that made it difficult to breathe even before the coronavirus.

It is also normal for your child to ask if you or others in their life will get sick or die of Covid-19 so be clear about the precautions your family is taking in order to stave off the illness.

“We are doing everything we can to stay healthy. We are washing our hands with soap and water, keeping our home very clean and staying away from others to keep from getting the virus,” you might say.

“We are also wearing masks and gloves when we are at the store to get groceries. And don’t forget, we are continuing to eat nutritious food, exercise and get good rest to keep ourselves strong.”

Provide ways to commemorate and honor

Given that social distancing is making it increasingly difficult, if not impossible, to grieve alongside loved ones as we typically do when someone dies, it’s imperative that we find a way to allow children to say goodbye and remember. Studies have repeatedly found that when children are part of funerals and celebration of life events, they fare better.

“Funerals are about mourning,” Primo noted, “and mourning is a core component of a child adapting to their new norm, expressing their grief, and getting support from their community.” Without these traditional markers, find other ways to honor your loved one.

For example, have a small home-based ceremony and commemorate the person’s life by planting a tree, doing an art project, reading a poem, eulogizing and saying goodbye. You can also collect letters, video tributes and memories from others and share them with your children. Many have used Zoom to remember those who died. Ask your children, “How would you like to honor and remember _______?”

This conversation may be one of the toughest you will have with your kids, and one that, given the numbers, will be part of many families’ reality as we cope with incredible loss from the coronavirus. It’s stressful for everyone involved — for your children and for you, too.

Continue to reach out for the support you need so you and your children can be cared for during this difficult time. Even while we must be socially distant, no one should have to grieve alone.

Complete Article HERE!

When a Grandchild Asks, ‘Are You Going to Die?’

With the coronavirus largely affecting people who are grandparent-aged, it’s a good time to talk with children about death.

By

My granddaughter was a few months past 3 years old when she first asked the question, as we sat on the floor playing with blocks.

“Bubbe, are you going to die?”

Nobody is as blunt as a toddler. “Yes, I am going to die one day,” I said, trying to remain matter-of-fact. “But probably not for a very long time, years and years.”

A pardonable exaggeration. Bubbe (Yiddish for grandmother) was 70, but to a kid for whom 20 minutes seemed an eternity, I most likely did have a lengthy life expectancy.

My granddaughter, Bartola (a family nickname, a nod to the former Mets pitcher Bartolo Colon), was beginning to talk about the deceased ladybug she found at preschool. Make-believe games sometimes now featured a death, though a reversible one: If an imagined giant gobbled up a fleeing stuffed panda, he would just spit it out again.

So I wasn’t shocked by what a psychologist would call a developmentally appropriate question. I did mention our conversation to her parents, to be sure they agreed with the way I handled it.

Such questions resurfaced from time to time, even before something she knows as “the virus” closed her school and padlocked the local playground. Though her parents talk about hand-washing and masks in terms of keeping people safe, not preventing death, even preschoolers can pick up on the dread and disruption around them.

Long before the pandemic, it occurred to me that grandparents can play a role in shaping their beloveds’ understanding of death. The first death a child experiences may be a hamster’s, but the first human death is likely to be a grandparent’s.

With tens of thousands of young Americans now experiencing that loss — most coronavirus fatalities occur in people who are grandparent-aged — it makes sense to talk with them about a subject that’s both universal and, in our culture, largely avoided.

Parents will shoulder most of that responsibility, but “grandparents have lived a long time,” said Kia Ferrer, a certified grief counselor in Chicago and a doctoral fellow at the Erikson Institute in Chicago, a graduate school in child development. “They’ve been through historical periods. They’ve lost friends.” We’re well positioned to join this conversation.

But that requires setting aside our own discomfort with the topic when talking to children. “It’s symptomatic of our society that we get nervous about what we tell them and how we’ll react,” said Susan Bluck, a developmental psychologist at the University of Florida who teaches courses on death and dying.

“But if they’re asking questions, they want to know,” she added. If we shy away, thinking a 4-year-old can’t handle the subject, “the child is learning that it’s a bad thing to ask about.”

We want kids to understand three somewhat abstract concepts, Dr. Bluck explained: that death is irreversible, that it renders living things nonfunctional, that it is universal.

We don’t need to prepare a lecture. “Only answer what they’re asking and then shut up,” advised Donna Schuurman, former executive director of The Dougy Center in Portland, Ore., which works with grieving children. “Listen for what they’re thinking. Let them digest it. The next response might be, ‘OK, let’s go play.’”

What and how much our beloveds understand depends on their ages and development, of course. Kids Bartola’s age will have trouble grasping ideas like finality.

They also tend to be awfully literal: My daughter, who knew better but spoke in the moment, once explained the Jewish custom of sitting shiva by saying that the family was going to keep their sad friend company because she had lost her father. “She lost him?” Bartola said wonderingly. “Did he blow away?” Oops, take two.

But 5- to 7-year-olds can think more abstractly. “That’s when they start understanding the cycle of life and the universality of death,” Ms. Ferrer said. And kids 8 to 12 “have an adultlike understanding,” she said, and may want to know about specifics like morgues and funeral rites.

What each age requires of us, experts say, is honesty. Euphemisms about grandpa taking a long trip, being asleep or going to a better place, create confusion. If someone died of illness, Ms. Schuurman advises naming it — “she got a sickness called kidney failure” — because kids get sick too, and we don’t want them thinking every ailment could be fatal.

Ms. Ferrer talks about a loved one’s body not working anymore, and medicine not being able to fix it. Even kindergartners know about toys that no longer work and can’t be repaired.

Nature can be helpful here. On walks, I’ve started pointing out to Bartola the flowers that bloom and then die, the leaves changing color and falling. A lifeless bird in the driveway presents an opportunity to talk about how it can’t sing or fly anymore.

Ms. Schuurman endorses small ceremonies for dead creatures. Wrap the bug or bird in a handkerchief or put it in a box; say a few words and bury it. “Let’s honor this little life,” she said. “It sets an example of reverence for life.”

Psychologists favor allowing children to attend the funerals of beloved humans, too, with proper preparation. In some families, religious beliefs will inform the way adults answer children’s questions.

The professionals I spoke with suggested some material to help grandparents with this delicate task. Ms. Ferrer is a fan of Mr. Rogers’s 1970 episode on the death of a goldfish and the 1983 “Sesame Street” episode in which Big Bird comes to understand that Mr. Hooper isn’t ever coming back.

Complete Article HERE!

How Dying Taught Me to Live

By Brad Dell 

His little ribs rose, then fell, then rose, then fell, then stayed still. The spark left his green, curious eyes — I swear it wasn’t a trick of the light. They were dull … dead.

I loathed myself for letting my first cat be put to sleep without me by her side. I swore I’d be there for my second when he passed less than a year later. I swore I’d look him in the eye, even if it meant nothing to him. And so I did.

The odd thing was that he wasn’t afraid. He was calm. He’d spent a good life of hunting, cuddling, and lounging. He knew his place in nature’s cycle. I didn’t understand that. Not then.

But my time came.

Sepsis destroyed me. As my soul ripped loose from my bones, I gasped to my girlfriend that I loved her but I would soon need to die. Then I pissed the bed. I realized that dying isn’t romantic like in the movies. I stank from rolling around in a soiled, sweaty bed, and my voice was hoarse from begging for an end.

While death isn’t romantic, it can be peaceful. In my time, I’ve known many who have passed — they’re either ready or they’re not. I wasn’t yet ready. I was ugly and bitter in my death, outraged by the unfairness of this world.

Somehow, I survived.

The paradox of death is that it teaches you how to live. The tragedy of death is not everyone gets a chance to apply what they’ve learned.

I woke up in an unfamiliar world. All details seemed illuminated and emotions felt overwhelmingly potent. I cried a lot more, hugged a lot more, prayed a lot more, loved a lot more.

Former priorities fell away; ambition, money, and comfort lost their gleam. Each day during recovery, I composed an obituary in my head: “Boy dies of cystic fibrosis. He had caustic humor, good grades, and a decent savings account.” I craved depth and vowed to thrive with passion and weave a legacy of compassion.

Did my old friend know I’m sorry for calling him fat in fifth grade? Did my sister know I look up to her? Did my parents know I regret every single time I lashed out at them? Did everyone know that I mostly only pretended to love, yet always yearned to learn its power?

I lay in my soiled bed and tried recalling instances in which I’d helped people out of love rather than for the potential of a self-serving debt. I sobbed at the realization that I’d lost myself long, long ago. In prayer, I begged for redemption, for help with becoming the Brad I was designed to be.

It’s been 47 months since that prayer. I’m nowhere close to perfect, but I’m far from who I was. Today, my joy comes from expressions of vulnerability, wide smiles and belly laughs, the bonds forged through struggle, the light in people’s eyes, the warmth of another body, the tears poured in prayers, the little acts of love and the big acts of love, the feet that tap along to music, the winding conversations over meals, the exhilaration of adventure, the richness of sharing nature and sunsets with strangers.

I am ready to die, when that time comes again, though I’d love to learn even more about life with a third pass. Death is liberating, driving me to be fully present and live intentionally for the things that truly matter.

Like my old cat, I know my place in nature’s cycle. Mine is to love and be loved in return. Maybe that seems sappy to those who haven’t yet died. But one day you’ll understand, too.

Complete Article HERE!

When is the best time to talk about end-of-life decisions with your teen who has cancer?

 
BY: Kathryn DeMuth Sullivan

A study published recently in JAMA Network highlights the need for improved pediatric advanced care for adolescents with terminal cancer. The research reveals a gap in understanding between parents and children when initiating and discussing critical conversations about end-of-life decisions.

“Advance care planning interventions are needed to improve families’ awareness and understanding of their teens’ end-of-life choices,” says principal investigator Maureen E. Lyon, Ph.D., a Children’s National Hospital clinical psychologist.

“Teens need to have a voice in their care and families are eager to know what their teens want, but those conversations can be difficult,” says Dr. Lyon. “Advance care planning interventions for parents and adolescents create a space where they can ask questions and be honest with each other.”

While families with adolescents with cancer are often spinning with the daily struggle of life, the authors say that clinicians presume that families understand adolescents’ treatment preferences for end-of-life care – and this can cause miscommunications. As has been seen not only in the pediatric setting, a lack of advance care planning is associated with increased hospitalization, poor quality of life, and legal actions.

The study involved a survey of 80 adolescent-family dyads (160 participants) from four tertiary care U.S. pediatric hospitals. From July 16, 2016, to April 30, 2019, the families were exposed to Family-Centered Pediatric Advance Care Planning for Teens With Cancer intervention sessions.

The results showed that family members’ understanding of their adolescent’s beliefs about the best time talk about end-of-life decisions was poor, with 86% of adolescents desiring an early conversation on the topic (before getting sick, while healthy, when first diagnosed, when first sick from a life-threatening illness, or all of the above), but with only 39% of families understanding this. This was particularly when it came to the topics of dying a natural death and being off life-support machines. Nevertheless, families’ did seem to have an excellent understanding of what was important to their adolescents in regards to wanting honest answers from their physician and understanding treatment choices.

The findings from the study can be found here in the article “Congruence Gaps Between Adolescents With Cancer and Their Families Regarding Values, Goals, and Beliefs About End-of-Life Care.”

Complete Article HERE!

Kids Are Grieving, Too

Parents are facing difficult moments as children confront the death of a loved one, something they may not fully understand.

By Melinda Wenner Moyer

The coronavirus pandemic has taken more than a quarter of a million lives, many of them mothers, fathers, aunts, uncles and grandparents — adults who have left grieving children behind. Many more children will lose loved ones in the coming months. Here’s some guidance on how to talk to kids about illness and death, and how to support them when someone they love dies.

Be Honest

It can be hard to know how much to share with kids right now. We want to prepare them for what might happen, but we don’t want to needlessly terrify them. Still, if a family member or friend becomes seriously ill, it’s best to be honest about what’s going on, even if you don’t know exactly how things will play out, according to Joseph Primo, the chief executive of Good Grief, a New Jersey-based nonprofit that helps children deal with loss and grief. It’s a good idea, for instance, to tell your kids that grandma has the coronavirus and that even though lots of people are trying to help her, nobody knows whether she will get better.

This honesty might go against your protective instincts, but when we share our feelings and our vulnerability, it makes it easier for our kids to open up about what’s worrying them, and our honesty builds their trust, Primo said.

If someone close to your child is sick, it might also be wise to go over what your family is doing to stay safe, according to Robin Goodman, Ph.D., a certified trauma-focused cognitive behavior therapist based in New York. You might say, “‘That’s why we take care of you, that’s why you wash your hands, that’s why we’re careful when we go outside with a mask,’” Dr. Goodman said. Eileen Kennedy-Moore, Ph.D., a New Jersey-based clinical psychologist and author of “What’s My Child Thinking?,” also emphasized honesty — don’t lie by asserting that you’re all definitely going to be fine. “You can’t give any guarantees, but you can say, ‘my plan is to be around for a very long time,’” she said.

Explain Death

If a loved one dies, it’s best to avoid euphemisms, Primo said. If you tell children that grandpa’s just sleeping or he’s gone somewhere else, they might continue to believe that grandpa will come back or eventually wake up, and not process what happened. “When we try to protect kids by sugarcoating things and not giving them the real information, they end up constructing a narrative that is often far more scary than reality,” Primo said.

Dr. Goodman said that it was best to tell your kids that grandpa died, and then make sure they understand what death means. Tell them, “Once you die, you can’t come back, that your body doesn’t work anymore,” she said. It can help to differentiate what it means to be alive versus dead — to explain that people who are alive can watch TV, brush their teeth, eat and sleep, but that people who are dead cannot.

Correct Misconceptions

Children under 5 probably won’t be able to grasp the permanence of death. They may continue to ask when grandpa is coming back. That’s normal and age-appropriate; just patiently remind them that he died and is not coming back. “It doesn’t mean they’re avoiding it, denying it, not understanding it, it’s because that’s developmentally what they understand,” Dr. Goodman said.

It’s also common for children to worry that they caused a loved one’s death, Dr. Kennedy-Moore said. “The idea that terrible things can happen ‘just because’ is terrifying,” she said. “On some level, it’s painful — but less terrifying — to think that they did something to cause it.” To ease your child’s mind, Primo advises against chiding them or flat-out telling them they’re wrong. Doing so won’t change their mind — it’ll just make them feel like they can’t talk to you about it, he said.

Primo suggested that parents engage with the idea and ask the child why they feel responsible. You want to “explore the thought, keep providing facts delicately, and give them the space and time to process it,” he said. “The kid who gets onto the other side of this thought more quickly is going to be the one who was allowed to live with it for a little bit longer — and to dissect it and to realize, ‘oh, no, that wasn’t me, that’s not how this works.’”

It’s crucial to give your children the opportunity to talk about the death if they want to — and to gently help them understand what happened and why. Dr. Judith Cohen, M.D., a child and adolescent psychiatrist at the Drexel University College of Medicine and the medical director of the Allegheny General Hospital Center for Traumatic Stress in Children and Adolescents in Pittsburgh, witnessed her sister’s sudden death when she was 6, and no one engaged with her about it afterward. “I have a strong belief that when parents don’t talk about it, children develop negative beliefs about what they should have done, what they could have done, and why it happened. That can be very difficult, if not damaging, to their understanding of themselves and the world around them,” she said.

Share Coping Strategies

Funerals aren’t possible for many families right now, so it’s helpful to come up with other ways to remember and memorialize the person who has died. (If a funeral is taking place, you still might want to give your child the option of staying home — not all children like to attend funerals, and that’s OK, Dr. Goodman said.) Maybe you plant a tree in the backyard to remember them, bake their favorite bread, watch their favorite movie or make a special photo album.

Remember, too, that grief doesn’t follow a schedule. American culture expects people to mourn quickly — to cry at the funeral and then feel a sense of “closure” and move on — but these expectations aren’t particularly healthy or appropriate. “Ultimately, the purpose of mourning and memorializing is to foster an ongoing sense of connection with the person who died,” Primo said, and that means “we can memorialize and remember as often as we want.”

It’s also OK for your kids to see you feeling sad and to engage with them about your grief, according to Robyn Silverman, Ph.D., a child and teen development specialist who hosts the podcast “How To Talk To Your Kids About Anything.” “When you talk about your own feelings about anything, it opens the door for the child to talk about theirs — it gives them that permission,” she said.

If your children are having trouble talking about their feelings, Dr. Kennedy-Moore suggested getting out a pack of index cards and asking your child to help you brainstorm various emotions, writing one emotion down on each card (and making sure to include feelings like “sad” and “lonely.”) Then, ask your child to sort the cards into three piles: A “yes” pile (for feelings they’re feeling right now), a “no” pile (for feelings they aren’t experiencing), and a “maybe a little bit” pile. Then, ask them to go through each of the cards in the “yes” and “maybe a little bit” piles, pausing on each one to explain why they believe they are feeling that way. Dr. Kennedy-Moore said that parents should try not to “fix” their children’s feelings or talk them out of having them, but just to briefly acknowledge them. This approach encourages kids to name and engage with their emotions, which “makes those big, messy feelings seem more understandable, and therefore more manageable,” she said. (Sesame Street also has online resources to help children understand and talk about their emotions when they are grieving.)

Support Your Grieving Child

Children often grieve differently than adults — and on a different schedule. They might be upset for a few minutes, and then seem totally fine, and then a few hours later feel sad again. “They grieve deeply, but they don’t hold on to those feelings forever,” Dr. Cohen said. Also, kids may not mourn all that much after they have lost a relative they only rarely saw, and that’s fine. This doesn’t mean they didn’t love them.

If you sense that your child is doing things to avoid engaging with their grief — refusing to talk about grandma or the memories they have of her — “therapy can be helpful,” Dr. Cohen said. Reach out to your pediatrician, a child therapist or a grief counselor for recommendations.

Finally, grieving children can benefit from following a somewhat normal home routine, Dr. Goodman said. This can be tough during a pandemic and especially after a loved one dies — nothing is going to feel normal at that point — but a routine can provide children with a sense of control and reassurance that everything is going to be OK. It tells them that even though things are so very hard right now, life is going to go on.

Complete Article HERE!

Anticipatory Grief Is Real,

And It’s Okay to Feel it During the Coronavirus Crisis

By

I keep having nightmares about going to Target. In these dreams, I walk through the aisles of one of my favorite places, enjoying a Saturday shop. Suddenly, as people brush by me or stand close in line, I realize my grave mistake: I’ve ventured out into a pandemic, and I’m surrounded by potentially infected people. Panic sets in. Anger at myself for somehow forgetting this new reality. Then I wake up feeling sad. I know I can’t go to Target, and I miss it. Once I can go back, will I be afraid, like in my dreams?

This is one of many minor things I mourn about our new way of life. As COVID-19 sickens thousands across the country and the world, the future we’ve all depended on is no longer a foregone conclusion, and it’s really, really sad.

Harvard Business Review named grief as the “discomfort” so many of us are experiencing, and that’s exactly true. I’ve cried for days on end, thinking about the things I thought I’d be doing. Worse, I cry when I imagine people in the near future I had neatly mapped out getting snatched away by an unrelenting illness. I grieve for those who are sick and dying, but I also grieve for my loss of autonomy, trips I’ve canceled, lost hours in the sun, and for the ideas I had about my future life that seem less tangible by the day.

I know I’m not alone. College and high school graduations won’t happen this year, leaving young people who are looking forward to a new chapter of their lives floundering. Many will miss out on prom, a pivotal coming-of-age moment for some. The going-away parties, weddings, birthdays — they’re all canceled.

Right now it seems trivial to mourn the absence of your college graduation ceremony or a school dance because of the coronavirus pandemic, particularly as dead bodies overwhelm hospital morgues. It is kind of trivial. And it’s true that it’s better to miss a milestone if it means saving lives.

But as our lives are torn apart, rendered unrecognizable by social isolation and coronavirus cancellations, it’s only human to mourn the life you thought you’d have.

“Anticipatory grief is that feeling we get about what the future holds when we’re uncertain. Usually it centers on death. We feel it when someone gets a dire diagnosis or when we have the normal thought that we’ll lose a parent someday,” David Kessler, grief expert and author, told Harvard Business Review. “Anticipatory grief is also more broadly imagined futures. With a virus, this kind of grief is so confusing for people. Our primitive mind knows something bad is happening, but you can’t see it. This breaks our sense of safety. We’re feeling that loss of safety. We are grieving on a micro and a macro level.”

It can also feel confusing because grieving a lost shopping trip, or even something bigger like a graduation, feels selfish. How can I feel bad for myself when I still have my life and, so far, my health? Ashley Ertel, LCSW, BCD with Talkspace, says ranking grief isn’t helpful.

“You may even be feeling guilty for being sad about missing out when other people are facing sickness and death,” she tells Teen Vogue. “I hope to encourage you by saying that grief comes in all shapes and sizes, and it is normal to feel all sorts of emotions when your reality does not match up with your expectations. Each of our emotional experiences is valid. We don’t compare our levels of joy, and we need to stay away from comparing our feelings of sadness. Sad is sad.”

Sad is, in fact, sad. Of course, no one would compare the grief of missing prom to that of losing a loved one, or even having and recovering from COVID-19. Everyone knows it’s not the same. Still, we feel sad, especially when the celebrations and rituals that “provide special meaning [in] our lives” are taken away, as Ertel puts it. Rather than push our feelings of grief and sadness away, Ertel recommends we allow ourselves to feel it. Acknowledge and honor your feelings, she says; then try to live in the current moment.

In this moment, I feel sad that I can’t go to my favorite restaurant on Fridays like I normally do. I feel sad that I might have to cancel my bachelorette party. I feel sad that this was supposed to be a happy, busy time in my life and it’s now marked by death and daily feelings of despair.

I also feel sad that people are sick. I worry about myself, my friends, and my family. I feel sad that people are dying, and I feel sad for their families. I feel sad that, when this is all over, we won’t know what’s normal and won’t feel familiar with the world around us. I feel sad that, more than ever, I don’t know what the future holds.

But I also feel excited for the dinner I’ll eat tonight. I feel thankful for my comfortable couch and my two adorable cats. I feel like I should brush my teeth. I feel grateful I have food in my fridge and a secure place to weather this storm. I also occasionally feel thankful for this big slowdown, for the canceled plans and postponed events. The mundane joys and discomforts of life are still here, amid all of this. Now, more than ever, I am reminded that there are things to be hopeful for, like the future trips to Target I know I’ll take. And I have hope that they will be happy, like they were before.

Until then, I think I’ll be sad — and that’s okay.

Complete Article HERE!

‘I’ve been saying goodbye to my family for two years’

Last year the author wrote about parenting with motor neurone disease. Here, he reflects on the end of life, before his death two weeks ago

Joe Hammond with his wife, Gill, and sons Jimmy (left) and Tom in 2018.

By Joe Hammond

In the beginning I was just a dad who fell over a bit and then couldn’t drive the car. Then we had a name for what was happening to me: motor neurone disease. The rest of my physical decline has taken two years and I now write with a camera attached to a computer, which tracks reflections from my pupils. I can use the same device to talk with my synthetic voice. It’s obviously slower to use, and has trained me to get to the point, in much the same way that dying has.

In the room next door, as I write, I can hear Jimmy, my two-year-old son, offering to take passengers on a bus ride to various destinations. It’s half-term and Tom, my seven-year-old, has wandered out into the garden. He’s smiling, looking back at the house, as he points out a squirrel to someone standing inside. There’s adult laughter, too. I can hear Gill, my wife, talking with one of my carers.

I’m in an adjacent downstairs bedroom, suspended in a sling that hangs from the ceiling hoist. It’s positioned over a bedpan, and my floppy neck is wedged upright between a pillow and a piece of foam. I usually stay here for a while because it also has a view of the garden. It’s gusty and leaves are twirling down from an ash tree.

I realise I’ve been saying goodbye to my family for two years. Always imagining this version of myself, without a voice or moving parts. But now I’m here, I can see that we’re all just interested in the same thing: how anxious all these squirrels are as they bury their treasure in the turf. How they keep looking back over their shoulders. And how life just carries on, until it doesn’t.

There was a moment halfway through my decline when Tom needed to check whether he would die one day. He was wrapped in a blanket on my lap as I confirmed its inevitability. He sobbed and I pulled the sides of the blanket in around him. After a few moments his tears came to an end, and five minutes later he was upside down on the sofa giggling at his toes.

Children walk past spiders’ webs all the time and see little things dying. Death is all around them; they know this better than their parents, who have often forgotten. I know I had. But children haven’t reached this stage yet. Death and dying can be known. It doesn’t stop them laughing at a fart or making an empty crisp packet go pop.

Jimmy was at my bedside a few mornings ago dispensing imaginary ice-cream. I was staring upwards, and I could hear him low down to my right. I opened and closed my mouth to show that I was eating some of the “[va]nilla” on offer but, silent and motionless, I don’t know if he noticed, and then I heard him padding away into the next room.

I can’t be active in the life of my children. I have to see what the day brings. There was the moment last week when Tom rested his cheek into my upper arm, gently twisted the top of his head upwards against my flesh like a nestling cat, then twirled away. It was a moment that must have lasted five seconds at most but I kept it with me – held on to it – for days, as if I wasn’t just making contact, but taking an imprint.

I owe these moments to materials that are both plastic and hollow. To an expanding network of tubing crisscrossing my body: transparent blues and yellows, concertinaed or smooth. The largest gauge of tubing has the central importance of the eastbound M4 heading into London. This is the one swooshing air and oxygen into my lungs, but there are other tiny subcutaneous tubes more like narrow Cornish lanes, trickling a minuscule palliative cocktail just under the skin of my bicep. The other key thoroughfare is the one delivering sticky beige nutrition through a macaroni-sized tube running directly into my abdomen.

Tubes are now a way of life and, with so many doctors and nurses coming and going, there’s plenty of spare tubing lying around. This place is like a fisherman’s cottage but with coils of plastic everywhere – in wicker baskets or hanging from hooks. A lot of it ends up in the bath with my two boys. Or it becomes part of Jimmy’s marching trumpet band.

When I was diagnosed, my heart broke in different ways, but some of those feelings have softened. It was always the tiny pieces of future that hurt. I’d imagine Gill and Tom and Jimmy unloading shopping, or just being listless together on a Sunday.

But I’m very still with this disease now: I’m an observer, sensing lives happening in other rooms. I hear bottles and cans rattling in plastic bags. I see the rain at three o’clock on a Sunday. All this detail goes by or around me and I see it working. I see three people moving and turning together – and it’s no longer breaking my heart. It’s just sad and comforting. I didn’t expect the end of my life to feel like the future.

Hammond and his family at home last month.

I see and hear my family clowning around and I want so much to be in there with them – teaching my children to brush their teeth in the style of a camel. Instead I’m unnaturally still – observing the way their bodies move to express or receive humour. The way a back curves, or a head is thrown back. Watching hands thrust out wide, or even the opposite of such movements. All the infinite expressions. But I’m not clowning around any more; I just see it going on – how ornate it is, how beautiful.

Other losses are simpler and more incremental. Sometimes they are nothing more than adaptation and sometimes, like the loss of my voice, they are devastating. I lost my swallow very quickly. There was a three-week period when Gill made sure I had lots of really nice soups, and that was it. Food was a thing of the past. I’ve never got over that loss.

I’m fortunate that my ventilator filters out the aroma of most foods, replacing them with a smell like the inside of a plastic bucket. Occasionally smells get through, like roast lamb or the mist that comes from Tom peeling an orange, but mostly I’m assailed by food memories. The most recent is of the yellow Styrofoam containing takeaway from a Lebanese restaurant. Other food memories are more permanent and catastrophic, and these are all the foods I ever made or shared with my young family.

When the boys are in bed, Gill climbs up on to my hospital bed and sometimes falls asleep. It can feel like I’ve been waiting the whole day for this moment. Watching Gill asleep always feels like such peace to me, and some of this article would have been written with Gill by my side in that way.

It’s really hard to cry when you rely on a mask for air. I use a mask that’s attached to my nose, so when I cry my mouth stretches wide open and all the valuable air gusts out, like a badly insulated letter box. And the camera I use to communicate can’t track the progress of my pupils, so crying is a form of incapacitation. It’s so much easier for Gill, who can stretch out on the bed and sob without any of these secondary difficulties. It’s not that we’re always crying together. It just happens sometimes. Recently Gill’s been reading to me from old travel diaries, written in the days before we had children. Stories of mountains and recklessness on motorbikes, other countries. The past feels so luxurious.

But now it’s the present. It’s all been leading up to this. Sad but no longer broken. Here with Gill. It’s a magical kind of sadness, saying goodbye. A bit like preparing to travel again, but no longer together.

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