Ep. 8: Living In Dying, Dying In Living: Grieving Before Death
Release Date: 03/05/2015
Grief Out Loud
Jessie was 21. Molly was 11. Two days after their joint birthdays, their mom, Jill, was murdered by Molly’s father. In the hours, days, and years that followed, there was little room for grief. Jessie and Molly were expected to keep going — and they did. But that forward momentum came at a cost. It’s been nearly 20 years, and only recently have Jessie and Molly begun to revisit what happened and what it’s meant to live with unspoken grief and unacknowledged trauma. As part of that process, they discovered a manila envelope packed away in storage - inside were eight...
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How do you keep your heart open to love after it's been broken apart by grief? was just 19 when her father died of a heart attack. In 2022, her partner Ian died suddenly. Then, in 2024, her beloved dog Blue died, and with Blue went many shared memories of time spent with Ian. The experience of loving and being loved by Ian opened up places in Danielle's heart that had closed down after her father's death. That openness has stayed with her, even as she grieves for both Ian and Blue. That ongoing love and connection have shaped Danielle's grief and the ways she tries to support others who are...
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Sometimes we can't really begin to understand grief - ours or anyone else's - if we don't have space to talk about the death. The context surrounding how someone died matters and can shape our grief in meaningful ways. This was true for who was a caregiver for her parents, Hal and Sylvia, for many years. They died three years apart, her dad in 2019 and her mom in 2022, and the circumstances of their deaths greatly impacted Kari and her grief. We discuss: How her parents lived - and how they each died Why their death stories matter when it comes to grief The anger and resentment in...
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In this episode, Camila returns to Grief Out Loud six years after her first appearance to share how grief continues to evolve. What began with the sudden loss of her mother at age 21 has now expanded to include the ongoing grief of caregiving for her father, who is living with dementia and Alzheimer's disease. Camila discusses the unique challenges of long-distance caregiving, the differences between sudden loss and gradual decline, and how these two types of grief intersect in her life. She also discusses navigating major life milestones—including getting married during the...
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In this deeply personal episode, Mark Chesnut returns to Grief Out Loud to share his experience of losing his sister Glynn to ovarian cancer. Glynn chose medical aid in dying after nearly four years of treatment, giving Mark and his family the unusual experience of knowing when death would occur. This conversation explores the complexity of "scheduled death," the challenges of finding appropriate language to discuss medical aid in dying, and how knowing the date changed their family's grieving process. is a journalist, editor, public speaker, and the author of: Mark previously appeared...
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When someone dies, our relationship with them doesn't just disappear. Sometimes the relationship changes in ways we never expected, allowing us to feel closer to them than we did when they were alive. This can leave us learning to grieve not just for what we had, but for what never got the chance to have with them. In this episode we talk with Never Faull about grieving for their father, who died in 2018 from cirrhosis of the liver. Nev shares how their relationship with their father was distant during his life and how they've found ways to create a deeper connection with him after his...
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is an author, executive, and healer-at-heart. She's also a grandchild grieving for her grandmother and a daughter estranged from her parents. In this episode, Daria shares the profound impact of losing her maternal grandmother at age seven and how that early loss reverberated through her life. This loss and grief exist alongside the immense healing she's done around growing up in poverty, childhood trauma, and her parents' absences, addictions, and the eventual estrangement from them. With the recent release of her memoir, , Daria opens up about the moment, decades later, that reawakened the...
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In this episode, we delve into the grief experiences of children and teens with autism. Our guest, - Director of the HEARTplay Program and a dance movement therapist with decades of experience - joins us to discuss how children with autism process grief and how parents and others in their lives can support them. Drawing on her background in both nonverbal forms of expression and grief support, Jennifer shares compassionate, practical insights rooted in her work with families. This conversation is both timely and essential, especially during , as it highlights the importance of expanding how...
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Grief often arrives without warning and changes everything we thought we knew about ourselves, our families, and the world around us. In this episode, we talk with Erin Nelson and Colleen Montague about their new book, When Grief Comes Home, a resource created from years of both personal loss and professional experience supporting families who are grieving. Erin, founding Executive Director of in Central California, and Colleen, Program Director, discuss how they came to write this book that blends memoir, practical tools, and reflective questions. We discuss: Erin's personal...
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What does it mean to lose your anchor people? In a short period of time, experienced the death of her mother, her mentor Nikki Giovanni, and her childhood friend, Charnetta. Renée shares how these experiences influenced her latest novel for young readers, , which follows 13-year-old Sage as she navigates grief after the death of her best friend. Renée Watson is a #1 New York Times bestselling author whose recent book All the Blues in the Sky explores grief through the eyes of a young person. Her young adult novel, , received a Coretta Scott King Award and Newbery Honor. Her children's...
info_outlineLiving 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:
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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.
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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.
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Exhaustion: There is usually complete emotional, physical, mental, social, and spiritual exhaustion.
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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.
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Financial Setbacks: Loss of income and increased medical expenses & secondary care expenses usually confront most families.
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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.
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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?
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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.
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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.
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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.
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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.
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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.
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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.
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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.
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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!
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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.
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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.
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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?
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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.
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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.
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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.
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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.
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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.
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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]