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

Grief Out Loud

Release Date: 03/05/2015

Ep. 172: Living After Your Child's Life Ends - Margo Fowkes show art Ep. 172: Living After Your Child's Life Ends - Margo Fowkes

Grief Out Loud

How do you go on living after your child's life ends? How do you continue to find connection, beauty, and meaning when someone we can't imagine living without dies? This is the question Margo Fowkes faced when her son Jimmy died of brain cancer at the age of 21. Margo barely had a moment to grapple with this devastating loss when just year later, her mother also died. Out of these two losses, Margo created her website, Salt Water. 

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Ep. 171: Reckoning With Grief At The End Of Life - BJ Miller show art Ep. 171: Reckoning With Grief At The End Of Life - BJ Miller

Grief Out Loud

BJ Miller is a Hospice & Palliative Care Medicine physician who works with patients facing the end of their lives. When BJ's sister Lisa died of suicide over twenty years ago, he did what so many of us do, he pushed his pain aside. It was his work, supporting patients with advanced serious illnesses, that helped him realize the importance of reckoning with his own grief. 

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Ep. 170: Grief & Identity - Alica Forneret show art Ep. 170: Grief & Identity - Alica Forneret

Grief Out Loud

We can't separate grief from our identity. Grief is interwoven with our race, gender, sexual orientation, physical ability, access to economic resources, and every other part of who we are. Alica Forneret, whose mother died in 2016, is working to ensure that people have access to grief resources that are specific to different aspects of their identity.

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Ep. 169: When It Comes To Grief, What Counts? - Shelby Forsythia show art Ep. 169: When It Comes To Grief, What Counts? - Shelby Forsythia

Grief Out Loud

Shelby Forsythia returns to Grief Out Loud to talk about her new book, Your Grief, Your Way, a secular daily devotional for anyone dealing with grief. She pairs quotes with routines and practices that people can do in any order. We talk Your Grief, Your Way, what grief means during this time of COVID and a reckoning with police brutality and racism, the effects of cumulative grief, and what’s currently helping her (spoiler alert: cue the dance party playlist).  

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Ep. 168: Giving Forward - Grief & The Foster Care System (Derrick Kirk) show art Ep. 168: Giving Forward - Grief & The Foster Care System (Derrick Kirk)

Grief Out Loud

When Derrick Kirk was six years old, he and his two sisters were removed from their home and placed in the foster care system. For Derrick, growing up in the orphanage gave him a window into a different way of life. Now a successful entrepreneur, Derrick started the Derrick Kirk Foundation and his podcast, My Thoughts With Derrick Kirk, to help other youth growing up in the foster care system. 

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Ep. 167: (Trying To) Understand Suicide - Paula Fontenelle show art Ep. 167: (Trying To) Understand Suicide - Paula Fontenelle

Grief Out Loud

Paula Fontenelle is a journalist turned therapist who specializes in suicide prevention and supporting those who have had someone die of suicide. Paula's professional interest in this work is rooted in personal experience. Her father died of suicide just over 15 years ago and his death set her on two parallel trajectories: studying everything she could about suicide and spending hours interviewing friends and family, uncovering stories and details about her father's life and the pain he carried. 

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Ep. 166: Emotions Aren't Problems - Krista St-Germain show art Ep. 166: Emotions Aren't Problems - Krista St-Germain

Grief Out Loud

Many of us grew up believing that some emotions are good, some emotions are better, and some (most) emotions are bad. When it comes to grief the list of emotions we'd like to not have can be long: guilt, anger, shame, regret, etc. What would happen though if we stopped thinking of them as problems that need to be fixed? It was this shift that changed things for Krista St. Germain after her husband was killed by a drunk driver. Krista is a life coach who hosts the Widowed Mom Podcast. 

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Ep. 165: As The Shock Wore Off - Grief's Second Year (Mira Simone) show art Ep. 165: As The Shock Wore Off - Grief's Second Year (Mira Simone)

Grief Out Loud

Mira Simone is a writer, mother, and grieving wife. Her husband Brian died of cancer in the winter of 2019, just seven weeks after a diagnosis of stage IV melanoma. When Brian died, their daughter Davida was about to turn three. Brian's death created a huge crater in their lives - leaving Mira to figure out how to live without Brian, who was the biggest love she'd ever known, while also supporting Davida in her grief.

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Ep. 164: Supporting Children & Teens In Grief - Kevin R. Carter, LCSW show art Ep. 164: Supporting Children & Teens In Grief - Kevin R. Carter, LCSW

Grief Out Loud

For the past three decades, Kevin Carter, LCSW, has worked as a clinician, administrator, and educator. He currently serves as the Clinical Director at the Uplift Center for Grieving Children in Philadelphia, PA. Kevin's work focuses on how grief and trauma affect youth, and particularly the African American children and families he works with.

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Ep. 163: Capital L Love - Caring For A Parent With Alzheimer's (Brianne Grebil) show art Ep. 163: Capital L Love - Caring For A Parent With Alzheimer's (Brianne Grebil)

Grief Out Loud

When Brianne Grebil’s mother was diagnosed with Alzheimer’s at the age of 62, Brianne packed up and moved from LA back to northern Idaho to help care for her. Many of the moments Brianne dreaded the most ended up shifting her understanding of love and what remains when we lose everything. We talk about Brianne’s book, Love Doesn’t Care if You Forget: Lessons of Love From Alzheimer’s and Dementia and the complexities of planning a memorial during the COVID-19 pandemic. 

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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 pathways@dougy.org