loader from loading.io

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

Grief Out Loud

Release Date: 03/05/2015

Interviewing Grief - Caitlin Garvey & The Mourning Report show art Interviewing Grief - Caitlin Garvey & The Mourning Report

Grief Out Loud

Caitlin Garvey's mother died in June of 2008, the summer after Caitlin's freshman year of college. Many years later, Caitlin decided to interview a series of people closely tied to her mother's illness and end of life. Those interviews, interspersed with Caitlin's memories and reflections, were recently published as The Mourning Report.

info_outline
Grief Doesn't Stop When You Clock In - Supporting Employees In Grief show art Grief Doesn't Stop When You Clock In - Supporting Employees In Grief

Grief Out Loud

Leslie Barber is back for another episode! When Leslie's husband Steve died of cancer, she had a lot to figure out. How to live without the love of her life, how to raise their daughter on her own, and how to manage working while grieving. Leslie's company, Grief Warrior, trains business leaders, managers, and human resource departments to become more grief inclusive.

info_outline
Anger & Grief  show art Anger & Grief

Grief Out Loud

Keyana was 9 when her dad died. He died of suicide, but at the time her mom just told her he was gone. Eventually Keyana learned the truth and wrestled with all the emotions that come with having a parent die - confusion, overwhelm, sadness, and most of all for Keyana - anger. Anger at her dad, her mom, and the circumstances. As an adult, Keyana realized she needed to learn more about this anger and find ways to express it that didn't cause harm to herself and her relationships. 

info_outline
When Grief Goes To Camp - Brie Overton show art When Grief Goes To Camp - Brie Overton

Grief Out Loud

Grief might not be the first thing you think of when it comes to summer camp, but there are thousands of children and teens who take their grief with them as they get to know bunkmates, play soccer, and make crafts. We talk with Brie Overton, Chief Clinical Officer for Experience Camps, about how she and her staff work to create connection and understanding for the children and teens who attend their camps across the country.

info_outline
Widowed By COVID-19 show art Widowed By COVID-19

Grief Out Loud

Sandra McGowan-Watts is a mother, a physician, and a widow. Her husband Steven died of COVID-19 on May 8th, 2020. She and their daughter have spent the past year trying to figure out how to live without a husband and father who did so much to support them. As of April 29th, 2021 over 575,000 people in the U.S. have died of COVID-19. What gets lost in these numbers are the actual people who died and the family and friends left behind. 

info_outline
Superhero Grief - Dr. Jill A. Harrington show art Superhero Grief - Dr. Jill A. Harrington

Grief Out Loud

Dr. Jill A. Harrington grew up surrounded by superheroes. As a parent and a professional, she turned to superheroes as a way to connect with her children and clients around loss, grief, and transformation. She recently teamed up with Dr. Robert Neimeyer to publish "Superhero Grief: The Transformative Power of Loss" in an effort to bring superheroes into the limelight of grief support – offering a cross generational, cross-cultural way to help all of us become more grief informed. 

info_outline
I Had A Brother Once - Adam Mansbach show art I Had A Brother Once - Adam Mansbach

Grief Out Loud

Just weeks before Adam Mansbach's wildly popular book, Go The F**K To Sleep, was published, his brother David died of suicide. In interview after interview promoting the book, Adam worried that someone would ask about his brother, would catch him off guard with a question about the grief that was raw and painful. Now, almost a decade later, Adam's newest book, I Had A Brother Once, is a memoir in verse about David's life, death, and the confusing aftermath when someone dies of suicide. 

info_outline
Find The Helpers - Fred Guttenberg show art Find The Helpers - Fred Guttenberg

Grief Out Loud

On Valentine's Day, 2018, Fred Guttenberg rushed his two children, Jaime and Jesse, off to school. He had no idea it would be the last time he saw Jaime, who was murdered later that day in the Parkland School shooting. Jaime was killed just a few months after Fred's brother Michael died of as a result of being exposed to toxic substances when he ran into the World Trade Center as a 911 first responder. In the aftermath of Jaime's death, Fred dedicated himself to saving lives through ending gun violence.

info_outline
Caregiving For A Parent - Priya Soni & The Caregiving Effect show art Caregiving For A Parent - Priya Soni & The Caregiving Effect

Grief Out Loud

One day while driving between visiting her mom who had just had knee surgery and caring for her dad who had a progressive illness, Priya Soni wondered, "Where are the others?" By others, she meant the other adult children caregiving for parents and family members. Years later, this question would lead her to start The Caregiving Effect, an organization dedicated to bringing adult children caregivers together through stories, support, and mentoring. 

info_outline
Grieving While Black - Breeshia Wade show art Grieving While Black - Breeshia Wade

Grief Out Loud

Breeshia Wade's new book, "Grieving While Black: An Anti-Racist Take on Oppression and Sorrow," puts grief into a wider context. The context of our relationships and the larger systems that shape who has access to resources like time, power, and the space to grieve. Breeshia is an author, end-of-life caregiver, and grief coach. 

info_outline
 
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]