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

Grief Out Loud

Release Date: 03/05/2015

How To Make New Memories show art How To Make New Memories

Grief Out Loud

experienced the death of someone close to her every year between the ages of 15 and 21. The first was her father, who died of brain encephalitis. For the next five years, Katie did what so many teens do - she didn’t talk about her grief. Until she did. Now, she's the founder of and the author of new children's book, which invites children (and adults too) to find ways to make new memories with their person who died.  We discuss:  What Katie needed when her dad died and how that changed over time  Why she stopped talking about her dad and how she learned...

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Grief Out Loud

"How do I help someone who is grieving?" This is the perennial question when it comes to showing up for people we care about after someone dies. Zack Wheat, a Board Certified Chaplain, knows more than most about what people who are grieving need - and don't need. Professionally, Zack knows about this from his work as a hospital chaplain for an inpatient palliative care team. He also knows about it from his time volunteering as a facilitator in peer grief support groups at Dougy Center. But, long before he was a hospital chaplain or a grief group facilitator, Zack learned about how to be there...

Love Is Stronger - Interrupting Gun Violence show art Love Is Stronger - Interrupting Gun Violence

Grief Out Loud

is the founder of , an organization in Portland, OR dedicated to supporting gang-impacted families and communities in building healing, accountability, and safety. While Lionel and Love is Stronger focus on interrupting gun violence, this work is also rooted in grief. Lionel's uncle was shot and killed by the police in 1975. His cousin Donald was killed in 1999 by a rival gang. His mother died of a sudden illness when Lionel was 20. In the last two years, he went to over 40 funerals, many of those for young people killed by gun violence.  We talk about: Lionel's early...

Becoming A Cultural Kinkeeper show art Becoming A Cultural Kinkeeper

Grief Out Loud

What does it mean to be a cultural kinkeeper and how does that idea relate to grief? These are two of the questions we explore with , co-founder of , a platform meant to inspire people to collect and document family stories, recipes, and traditions. When Anika’s mom died suddenly in 2019, she realized just how much she didn’t know, not just about her mom, but also about their family history and cultural traditions. Root & Seed is Anika’s offering to help others have meaningful conversations with their family members in the hopes of recording those important stories and...

The Grief Garden - Supporting Collective Grief show art The Grief Garden - Supporting Collective Grief

Grief Out Loud

As more opportunities for non-traditional grief support arise, it's no surprise that many of them are happening in historically marginalized communities who have not felt relevantly supported in those settings.  co-created by , a multidisiciplinary artist, and Tiana Zabala, the garden manager at is the perfect example of this type of offering. The Grief Garden was designed to bring people together, in relationship with the outdoors, where they could engage with rest, movement, medicine making, and sound.  Julia Mallory is a storyteller, writer, and artist who after the death of...

When I Think Of Him, Love Is The Word That Comes Up - Pierce Freelon show art When I Think Of Him, Love Is The Word That Comes Up - Pierce Freelon

Grief Out Loud

is a GRAMMY® nominated musician, author, and educator. He is also a son, a father, a husband, and an astute observer of life and grief and everything in between. Pierce was a caregiver for his father, , a renowed architect who died of ALS. He's also the author of the new children's book, Daddy and Me: Side by Side, a beautiful rendering of the times Pierce and his father spent in nature, and how Pierce is doing the same with his own son. A few hours before our interview, Pierce got word that a beloved professor from his time in graduate school, , had just died. In connection to both of...

How Do I Keep Going Without Her? Kelly S. Thompson show art How Do I Keep Going Without Her? Kelly S. Thompson

Grief Out Loud

When  and her older sister Meghan were children, they were close. Meghan was Kelly’s protector and constant as they moved around as a military family. Things shifted when Meghan hit adolescence and started using substances. Their connection disintegrated and they spent years barely in touch. When Meghan stopped using, they came back together and worked to rebuild trust and repair their relationship. Then, on the same day Meghan gave birth to her second child, she was diagnosed with a cancer that would end her life in less than two years. Kelly became her primary caregiver, going with...

We Need Queer Specific Grief Spaces - Queer Grief Club & Jamie Thrower show art We Need Queer Specific Grief Spaces - Queer Grief Club & Jamie Thrower

Grief Out Loud

is a Queer death doula, end-of-life educator, and grief guide in Portland, OR. She is also the founder of the which provides inclusive non-traditional grief support offerings for those grieving both death and non-death losses. Jamie knows from her personal experience of grieving the deaths of her parents and her daughter, Birdie, who she and her wife lost in the second trimester, just how important it is for grief support to be reflective of identity, relationships, family constellations, and community.  We get into: Grieving as a queer person right now and the importance of community...

It Affects All Of My Relationships show art It Affects All Of My Relationships

Grief Out Loud

Even though most of us know and accept that grief doesn't have an end point, it can still be surprising to witness how much it impacts almost every aspect of our lives, including our relationships. This was true for Daniel, who was two days away from his 8th birthday when his father died of a brain tumor. When he was a kid, grief impacted Daniel's relationship with a sense of safety and security. As a young adult, it affected what he was looking for in his dating relationships. Throughout his life, it's shaped who and how he feels safe and comfortable connecting with.  We discuss: What...

I Took A Year Off To Grieve - Rebecca Feinglos & GrieveLeave show art I Took A Year Off To Grieve - Rebecca Feinglos & GrieveLeave

Grief Out Loud

What happens when you take a year away from your income generating work to focus completely on grief? This is the question faced at the end of 2021. Grief wasn't new to Rebecca. She was a teenager when her mother died of brain cancer. On the same day her state shut down due to the COVID pandemic, she got a call that her father had died suddenly. In the ensuing months, she ended her marriage. So, by the time she got to the end of 2021, she was exhausted and empty and unwell. It's common to wish the world would stop and give us a break when someone dies, but we usually dream of escaping from it...

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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]