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

Grief Out Loud

Release Date: 03/05/2015

Suicide Postvention - What Schools Can Do show art Suicide Postvention - What Schools Can Do

Grief Out Loud

Anne Moss Rogers never imagined she would dedicate her working life to reducing suicide risk and supporting those grieving a death by suicide. She first came to this work after her son Charles died of suicide in 2015. Most recently, her focus has been on helping teachers and school adminstrators respond when a student is struggling with thoughts of suicide. Part of that focus is also on postvention - the steps schools can take to supporting their community when a student or teacher dies of suicide.

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Grief & Money - A Legacy Of Financial Fear show art Grief & Money - A Legacy Of Financial Fear

Grief Out Loud

In the last of our three-part series on Grief & Money, we explore how fears about financial stability can be part of grief. When she was 13 and her father died of a heart attack, Shannon already had a narrative of insecurity when it came to her family and money. Even though they had access to more resources after her father died, this narrative just grew stronger. This legacy of financial fear continues to shadow Shannon, even as an adult living in a secure two income household.

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Parenting Parentless - Katie C. Reilly show art Parenting Parentless - Katie C. Reilly

Grief Out Loud

Growing up, Katie C. Reilly, hadn't thought much about grief or mental health. Then, within the span of four years, Katie's mother died of ALS and her father died of cancer. This grief sent her spinning. As a journalist and writer, Katie turned to research as a way to better understand her own experience. In this conversation we delve into being a parentless parent, grieving a miscarriage, and how complex relationships can shape our grief.

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She Was My Favorite Person - Hello, I'm Grieving & Dr. Julie Shaw show art She Was My Favorite Person - Hello, I'm Grieving & Dr. Julie Shaw

Grief Out Loud

When our favorite person dies, our entire world gets up-ended. That person was often the planet in our galaxy that all the other planets and moons orbited. For Dr. Julie Shaw that person was her big sister, Jennifer. Jennifer died of Lupus in February of 2020. In the months that followed, Dr. Shaw realized how important it is for people to have acknowledgment and connection in their grief. She started Hello, I'm Grieving, a social media account focused on bringing more visibility and awareness to grief. 

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Grief & Money - Suddenly Responsible For Everything show art Grief & Money - Suddenly Responsible For Everything

Grief Out Loud

This is the second episode in our three-part Grief & Money series. Jessica was in her early twenties when she became a full-time caregiver for her mother who was diagnosed with stage 4 cancer. At the same time, Jessica was traveling to Colombia to care for her father who had Alzheimer's. After her parents died just three months apart, Jessica assumed responsibility for their finances. All while navigating the intense shock and heartbreak of their deaths. 

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Self-Care In The Early Days Of Grief - Paula Becker show art Self-Care In The Early Days Of Grief - Paula Becker

Grief Out Loud

Paula Becker is a writer, so when her son Hunter was killed in 2017, she searched for help in the pages of books. What she found were books heavy with text. The problem was her grief made it impossible to concentrate on that text. She recently published A Little Book of Self-Care for Those Who Grieve - the book she most wished she had in those first days, weeks, and months after Hunter died.

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A Kids Book About Grief show art A Kids Book About Grief

Grief Out Loud

Jelani Memory is the co-founder of A Kids Company About, which publishes books for kids about important topics like anxiety, empathy, racism, body image, and more. These are conversations kids are ready to have, often long before the adults in their lives feel prepared to have them. That's where A Kids Company About comes in with books that help adults and kids navigate these complex concepts. A Kids Book About Grief is a collaboration with Dougy Center, authored by our Executive Director, Brennan Wood

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An Altered State - Jeff Porter & Planet Claire show art An Altered State - Jeff Porter & Planet Claire

Grief Out Loud

When Jeff Porter's wife Claire died of an aneurysm, his world imploded. As he spent time with her in the hospital and started to wander that imploded world after she died, he talked to her, carrying on a conversation they had shared for 27 years. He also started writing and analyzing his experience with grief. This writing led to the publication of his newest book, Planet Claire: Suite for Cello and Sad-Eyed Lovers. 

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Making Grief Less Lonely - Reid Peterson & Grief Refuge show art Making Grief Less Lonely - Reid Peterson & Grief Refuge

Grief Out Loud

Reid Peterson, MA, recently launched Grief Refuge, an app that enable users to access daily grief support, when and where it's most convenient for them. Reid came to this work through his personal experience of grieving the deaths of his step-father and biological father. At a time when many of us both love and hate the virtual world, Grief Refuge, makes grief support more accessible and grief a little less lonely, no matter where you live or where you are in your grief. 

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Grief Is Not The Great Equalizer - Supporting Queer, Trans, & Justice Involved Youth With Lamya Broussard, Uplift  show art Grief Is Not The Great Equalizer - Supporting Queer, Trans, & Justice Involved Youth With Lamya Broussard, Uplift

Grief Out Loud

While will all experience some type of grief before we die, the prevalence of loss and how the world responds to our grief are shaped by racism, classism, homophobia, transphobia, and other forms of oppression. Lamya Broussard, MSS, MLSP, School & Community Services Clinician at Uplift Center for Grieving Children works directly with justice involved and queer & trans youth who are also grieving.

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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]