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

Grief Out Loud

Release Date: 03/05/2015

"I Can't Even Imagine" - Grieving Both Parents

Grief Out Loud

Mariyam was six when her father, Nurtay, died just before his 34th birthday. Now 20, Mariyam has experienced the deaths of four additional family members, including her mother, Bagitgul who died this past summer during the height of the COVID-19 pandemic in her home city in Kazakhstan. Now 20, Mariyam is figuring out how to live without both of her parents. We talk about the well-intentioned phrases like "I can't imagine what you're going through." "I could never survive" and how they feel to Mariyam. 

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Widowish - Melissa Gould show art Widowish - Melissa Gould

Grief Out Loud

When you think of the word "widow" what image comes to mind? When author Melissa Gould's husband Joel died, she didn't fit what she imagined widows looked and acted like, even if she felt like one. This dissonance led her to come up with the term "Widowish" which is also the title of her new memoir. Widowish is the story of her husband Joel, their love, and how she and their daughter Sophie found ways to grieve the heartbreak of his death. 

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The Indigenous Death Doula Mentorship Program - Chrystal Wàban Toop show art The Indigenous Death Doula Mentorship Program - Chrystal Wàban Toop

Grief Out Loud

What does it mean to train to be a death doula for your community? Chrystal Wàban Toop is the founder of Blackbird Medicines and she joined us to talk about how her early experiences with grief grounded her in the the work she does as a life spectrum doula and her commitment to helping people reconnect with traditional knowledge and cultural practices to guide individual, family, and community transitions throughout the life span. 

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Love Stories - A Griefy Valentine's Special show art Love Stories - A Griefy Valentine's Special

Grief Out Loud

Even if you don't really celebrate it, Valentine's Day can be rough when you're grieving. This year, we decided to bring you a compilation of love stories from listeners. Even though Valentine's Day is usually marketed as only about romantic love, this episode is about the love that exists in any connection. The idea for this episode came out of our conversation in episode 162 with Alesia Alexander, LCSW.

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Ep. 182: Healing Trauma, Attending To Grief - Native Wellness Institute & Jillene Joseph show art Ep. 182: Healing Trauma, Attending To Grief - Native Wellness Institute & Jillene Joseph

Grief Out Loud

Jillene Joseph, Executive Director of the Native Wellness Institute, joined us to discuss how settler colonial policies outlawing Native funeral rights purposefully cut people off from traditional practices and how that trauma reverberates today. We also talk about what it means to take a healthy risk in grief, the importance of attending to grief emotionally, physically, spiritually, and mentally, and how Native Wellness Institute is continuing to promote health and wellness with their Native Power Hours.

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Ep. 181: Ep. 181: "She's Always With Me" - Finding Peace In The Permanence Of Grief

Grief Out Loud

Molly loves her life, but she didn't always feel that way. 18 years ago, Molly's life changed in an instant when her mom died of a heart attack while driving Molly to school. Since that day, Molly's worked hard to figure out what helps her feel healthy and grounded. This includes recognizing that grief is permanent and will always be part of who she is in this world.

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Ep. 180: More Than Just A Number - Grieving When Someone Dies Of COVID-19 show art Ep. 180: More Than Just A Number - Grieving When Someone Dies Of COVID-19

Grief Out Loud

As of January 21st, 2021, over 400,000 people in the U.S. have been killed by the coronavirus. Globally, the number is over 2 million. Despite attempts by journalists and public health officials to put these numbers into context, what gets lost in tracking case counts are the stories of the people who died and their family members left behind. This is one of those stories. The story of Maria, beloved mother of four, who died this summer of COVID-19, told by Mariana, her youngest daughter.  

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Ep. 179: Sons Of Suicide - 50 Years Of Friendship & Grief show art Ep. 179: Sons Of Suicide - 50 Years Of Friendship & Grief

Grief Out Loud

This is the story of how a random encounter led to a transformative friendship that's lasted for more than 50 years. A friendship rooted in the shared experience of grieving a parent who died of suicide. David Pincus and Rick Knapp met as high school seniors. They had a lot in common, including a part of their lives that they rarely talked about. Both of their mothers had died by suicide. Their book, Sons of Suicide: A Memoir of Friendship, chronicles how these early losses shaped so much of their lives. 

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Ep. 178: Survivor's Guilt - Julia Mallory show art Ep. 178: Survivor's Guilt - Julia Mallory

Grief Out Loud

After her oldest son was killed in 2017, Julia Mallory had a sense that creativity was a place she could go in her grief. In that place, she wrote Survivor's Guilt, a collection of essays and poems about grief, joy, and the moments when they intersect.

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Ep. 177: The Relentless Nature Of Grief - Carmel Breathnach show art Ep. 177: The Relentless Nature Of Grief - Carmel Breathnach

Grief Out Loud

When Carmel Breathnach was 11, her mother died of cancer. While she felt supported at home by her father, she didn't feel that way at school. Now as an adult, Carmel’s carried this grief though graduations, moving from Ireland to the U.S.. getting married, and now through a pandemic.  We talk about the role anger played in her grief, what she needed from her teachers, how she honored her mom at her wedding, and how working on her forthcoming memoir, "Briefly I Knew My Mother," has affected her grief.  

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More Episodes

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]