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Ep. 8: Living In Dying, Dying In Living: Grieving Before Death

Grief Out Loud

Release Date: 03/05/2015

We Have No New Memories - Amanda Drews & Buzzy's Bees show art We Have No New Memories - Amanda Drews & Buzzy's Bees

Grief Out Loud

Amanda Drews is the founder of , the organization she started after her son Hudson, who was 13 months old, died of SUDC (Sudden and Unexplained Death in Childhood). Amanda started Buzzy’s Bees with a mission to provide financial support to families dealing with the unexpected loss of a child. Over time, Amanda realized what families really needed and wanted was a chance to talk about their children. So she launched the where families meet with professional writers and artists who capture the essence of their child and their life in a unique piece of art.   In this episode we talk...

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Grief Out Loud

This episode originally aired in June, 2019.  What is it about dark humor and why are we drawn to it when wrestling with painful life events? Laughter, especially the kind that wells up from a shared understanding of heartbreak, can be a surprising aspect of grief. Harry Jensen's father died of stage 4 colon cancer in January of 2017. Harry turned to stand-up comedy as a way to put his grief into words that often spark discomfort and uncertainty, but also serve as inspiration for people in the audience to open up about their own grief. We discuss prompting uncomfortable laughter,...

All About The Kids - And The Adults Who Support Them show art All About The Kids - And The Adults Who Support Them

Grief Out Loud

Dr. Micki Burns, Chief Clinical Officer at and Dr. Laura Landry, Director of Evaluation & Research at the JAG Institute join us to talk numbers. They, along with the team at Judi's House/JAG Institute, created the , the Childhood Bereavement Estimation Model, which estimates how many children and teens will experience the death of a parent/caregiver or sibling before they turn 18.  For years that number in the U.S. was 1 in 14. For 2022, it's increased to 1 in 13, reflecting the rise in deaths across the country due to COVID, substance misuse, and other causes. Laura and Micki talk about...

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Grief Out Loud

Rebecca Soffer, co-founder of the Modern Loss Community, started becoming an expert in grief the moment she learned that her mother Shelby was killed in a car crash. Her expertise expanded when four years later, her father Ray died of a heart attack while traveling.  As a single woman in her early thirties, Rebecca needed to talk about her grief, and she really needed to hear others talk about theirs. It was this longing for an ongoing conversation and led her, along with co-founder Gabi Birkner, to start the .  Nine years later, Rebecca just published her second book - . It's the...

Grief Is Love - Marisa Renee Lee show art Grief Is Love - Marisa Renee Lee

Grief Out Loud

As humans, we have a pervasive desire to compartmentalize. To box up messy thoughts and emotions and “just get on with it already.” For Marisa Renee Lee, this was the approach she took to navigating grief. Grief that started when she was 12 and her mother, Lisa, was diagnosed with MS. Grief that grew as her mother was later diagnosed with cancer and died in 2008. Grief that expanded to included infertility, pregnancy loss, and most recently, a cousin who died of COVID-19.  These last three losses led Marisa to realize that she didn’t have to box up her grief and shove it to the...

"How Are Your Parents?" - Sibling Grief & Jordon Ferber

Grief Out Loud

In grief land, lots of groups are talked about as invisible or forgotten. Children, parents grieving a miscarriage, ex-partners, and siblings. For siblings, their grief often exists in the shadow of their parents – or it’s at least treated that way by others.   ran into that when his younger brother, Russell, died when Russell was 21. While Jordon’s parents recognized that Jordon needed support just as much as they did, the rest of his sphere started where most people do, with the question, “How are your parents?” Jordon is the host and creator of the podcast. He's also a...

Trauma & Grief - Meghan Riordan Jarvis, LCSW show art Trauma & Grief - Meghan Riordan Jarvis, LCSW

Grief Out Loud

Being a plumber doesn’t mean the pipes in your house never leak.  Being a landscaper doesn’t mean your own yard is magically free of weeds. Why is it then that those of us who work in grief sometimes fall prey to the magical thinking that we will somehow be immune to the heartbreak when someone dies? Meghan Riordan Jarvis, LCSW, is a trauma-informed psychotherapist with over 20 years of clinical experience who harbored the same secret wish. A wish which imploded when her mother died in 2019, just two years after her dad died of cancer. While Meghan’s training and clinical acumen...

Splintering Grief - DJ Arsene Versailles & Marked By COVID show art Splintering Grief - DJ Arsene Versailles & Marked By COVID

Grief Out Loud

Lingering. Shivering. Simmering. Splintering. These are the words DJ Arsene Versailles wrote to describe grief after his mother, Florcie Yves Versailles, died of COVID-19 in May of 2020. This grief was and continues to be layered - as most grief is - and some of these layers are specific to his mom being a Black woman who died during a pandemic, of a disease that has come to be so much more than just a medical diagnosis. DJ's mom was committed to social justice and this inspired him to do similar work in the wake of her death. After meeting Kristin Urquiza, co-founder of Marked by COVID, he...

"The Silent Third Parent" - A Family Blended By Grief

Grief Out Loud

Anne Gudger was pregnant with her first child, Jake, when her husband Kent died in a car crash. Years later she met and married Scott and they had a daughter, Maria. Fast forward to March of 2020, the beginning of the pandemic, when Anne and Maria found themselves drinking a lot of coffee and talking about grief. Those conversations inspired them to start Coffee and Grief, a Facebook group for folks wanting to connect around loss. The Facebook group grew into a series of curated readings called Coffee Talk where writers share short pieces about anything in the realm of grief.  Maria and...

"We All Crave A Sense Of Hope" - Kathryn Schulz

Grief Out Loud

There are a lot of things in life that are difficult to describe. That’s why it can feel so gratifying when someone gives voice to something that we can barely grasp for ourselves. is used to finding the right words. She is a staff writer at The New Yorker and the author of Being Wrong: Adventures in the Margins of Error. She won a National Magazine Award and a Pulitzer Prize in 2015 for “The Really Big One,” an article about seismic risk in the Pacific Northwest. Her newest book, , applies that precision to the emotional earthquakes of losing her father Isaac, falling in love with her...

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Living with an advanced serious illness


All in all, even under the best circumstances where families have substantial financial resources and savings, great medical and life insurances, medical knowledge,  access to great health care and multiple caregivers, an articulated living will or end of life directives,  and emotional/spiritual support, it will be an extremely challenging and life altering experience.


Challenges and complexities


This is not an all inclusive list, but meant to highlight only a few of the challenges:

  • High Anxiety: Research has shown that children with an immediate family member who is dying have extremely high levels of anxiety and for good reason, death is ever present; Anxiety can be manifested in many forms; restlessness, “acting out,” anger, irritability, stomach aches,  nausea,  in-attention,  “on edge,” emotional distancing or clinginess to name a few.

  • High Stress: Family members may respond to the stress with big energy and little energy or varying between the two extremes. They will also be trying to cope with the stress in various ways, sometimes those ways will conflict with each other.

  • Exhaustion: There is usually complete emotional, physical, mental, social, and spiritual exhaustion.

  • Role Conflicts: The demands of the illness almost always creates role conflicts for each family member whether that is between  the role as a spouse or the role of a parent, spouse or caregiver, son/daughter pr caregiver, employee or family member;  teen/kid or child. This is one of the greatest contributors of stress.

  • Financial Setbacks: Loss of income and increased medical expenses & secondary care expenses usually confront most families.

  • Relationship Issues:  Life with an illness usually demands drastic changes in where one can spend time and invest energy. Maneuvering through social, professional, and familial relationship can be a challenge, even in a supportive environment.

  • Ethical Dilemmas: Most families will be confronted to make decisions that they never thought they would have to make or having to decide between options that are not favorable or agreeable. There may be differences of opinion within the immediate family. In addition,  many others will offer unsolicited advice when those dilemmas arise.

So what can a family do?


  • Keep open, honest, and clear communication in all directions. This includes between adults but also between adult caregivers and children. Most often adults refrain from sharing the truth with children because of our own fears rather than because of their lack of ability to handle the truth. As long as we are sincere, open to answering questions, repeatedly at times, and keep it to their age level, the long-term benefits of sharing the truth far outweigh the immediate benefits of concealing information or misrepresenting the truth.  Never lie to a child.

  • Communicate often.  Share what you know as you know it, even if that means you need to share that you don’t know anything.  You build trust with children when you communicate often about what it is going on and what you do know.

  • Give children tasks and responsibilities to reduce feelings of helplessness. No one likes to feel helpless, even kids. Soliciting their help and offering choices to help care for the person with the illness can help foster a sense of empowerment.

  • Provide structure and routine. Children and adults both need routine, especially in the midst of the chaos that so often ensues around medical issues. Provide as much structure as you can.

  • Leave room to be a kid/teen. The person who is dying is important, but they are one aspect of the child’s and/or teen’s life. Children need opportunities to play, have fun, be loud, and enjoy the company of other children. Teens also need opportunities for independence and socializing with other teens.

  • Role model being ok with not knowing. There will be a lot of unknowns.  Children need to see that it is ok not to know everything but still have confidence that something can be done, whatever that something may be.

  • Advocate for your child, your partner, and yourself. Unfortunately, the medical system is not entirely person-centered. Furthermore, our society doesn’t handle death, dying, and grief issues well. Therefore, you may have to step outside your comfort zone and speak up for what you and your family may need.

  • Acknowledge and validate emotions including guilt, fear, and anger. There will be many thoughts and emotions that each family member will experience at differing levels and at various times. All of them are normal and ok!

  • Forgive.  Families are not perfect. When we are in relationships with others, we are bound to disappoint and be disappointed. Acknowledging your human limitations and giving yourself permission to not just disappoint others but also yourself at times, can address some of the guilt one might experience.  

  • Anticipate future needs/wants. If it is possible, this would include preserving conversations between the person who is dying and the surviving family member and keeping memorabilia.  If it is a parent who is dying this could include writing letters of memories or videotaping advice for future milestones and events.

  • Finally, find allies and peers. This might mean finding new people or touching base with people you might otherwise may not know, but surrounding yourself and the children in your care with people who understand and empathize with your situation, can be the best medicine we can think of! If there was something else, we do be pursuing that.

What can someone else do who wants to support a family that has someone dying?


  • Be open.  Take a posture of listening without trying to fix, judge, rescue, minimize, advise, or silver line.  If one can do this, and do it well, it will go along way in changing a family’s experience.

  • Take your cue from the family; Each family is unique and each family member is unique and what works in one situation may not work in another. So what may have helped you may not help someone else, so be open to doing or being whatever the family might need at the time.

  • Only offer your advice/opinion if it is asked for. As much as we might want to share with the family our thoughts and opinions, that is not what most families need or want. We may be disappointed if they don’t ask us, but we should leave the opportunity to ask, rather than for us to share.

  • Offer to help with specific tasks. Offering to transport family members, mow the lawn, care give, or go out for a cup of coffee are great tangible ways to say I care.  

  • Don’t have any strings attached when you do offer support or communicate your care. Be flexible and patient. If you are not taken up on your offer or responded to, wait a few weeks and reach out again.  A simple “ I am thinking of you” communicates a lot without any added burden or pressure for the family to respond.

  • Provide opportunities for respite and normalcy. Restaurant gift cards, coffee breaks, watching a movie/ sports, etc… whatever the family interests were before the illness will be a challenge to do in the midst of the illness. Providing opportunities to reconnect back to those things, however creative it might have to be,  are generally appreciated.

For more information about our Pathways Program or how to support a family with an advanced serious illness, please contact us [email protected]