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

Grief Out Loud

Release Date: 03/05/2015

108 Ways To Survive Grief - Sweta Vikram show art 108 Ways To Survive Grief - Sweta Vikram

Grief Out Loud

In May of 2023, was overwhelmed with grief. In the span of three days, her father died, her father-in-law died, and it was the  9-year anniversary of her mother’s death. When she looked for information on how to survive the maelstrom of emotions, she found reassurances that she would eventually get to the other side, but nothing that showed her how to do that. So, Sweta set out to create the resource she was looking for and recently published, , a manual with 108 practical tips to survive and navigate grief.   We discuss: The overwhelm of multiple losses ...

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Embodied Practices For Tending Grief - Camille Sapara Barton show art Embodied Practices For Tending Grief - Camille Sapara Barton

Grief Out Loud

is a social imagineer who is reimagining how we define and relate to grief. As a writer, artist, and somatic practitioner, Camille is looking to create a new grief narrative expansive enough to include multiple forms of individual and collective grief, especially for queer, trans, and BIPOC communities. In Camille's book, , they offer rituals and embodied practices for feeling into and metabolizing grief.  Camille's lived experience with grieving death & non-death losses Support for grief that falls outside the traditional box Grief as a generative process Camille's learning from...

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Is There A Cure For Grief? - Cody Delistraty show art Is There A Cure For Grief? - Cody Delistraty

Grief Out Loud

is a journalist and he's also a son whose mother died of cancer. These two identities intersect in his new book, , which chronicles his quest to find a way to eliminate the pain of grief. After exploring Laughter Therapy, silent meditation, Breakup Bootcamp, and others avenues for grief expression, Cody landed where so many others do: realizing the "cure" for grief is allowing it to exist, while still engaging with life.  We discuss:  Who Cody was when his mom died How he used to define "successful" grief The secondary losses connected to his mother's death How his relationship to...

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The Ripple Effect Of Loss In Portland's Black Community - Sharice Burnett, LCSW show art The Ripple Effect Of Loss In Portland's Black Community - Sharice Burnett, LCSW

Grief Out Loud

It's impossible to speak for an entire community, especially when it comes to grief, but , knows a lot about the ripple effect of loss in the Black and African American community in Portland, OR. Born and raised in the community, Sharice is a clinical mental health therapist and consultant dedicated to naming and dismantling the larger systemic barriers that stand in the way of Black children and families having access to culturally relevant support, particularly mental health and grief support.  We discuss: Grieving the loss of an entire generation of elders...

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How To Stop Shoulding Yourself - Lisa Keefauver & Grief Is A Sneaky Bitch show art How To Stop Shoulding Yourself - Lisa Keefauver & Grief Is A Sneaky Bitch

Grief Out Loud

is a lot of things - she's a writer, speaker, educator, social worker, podcast host, mother, widow, and grief activist. She came to the last two titles when her personal experience of grieving for her husband Eric, who died of a brain tumor in 2011, intersected with her professional life as a clinician. At this intersection, Lisa realized just how grief illiterate the world is and how that illiteracy creates unnecessary suffering for those who are grieving. Lisa hosts the acclaimed podcast,  and recently published her book, .    We discuss: The gift of love from her...

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Autism & Grief show art Autism & Grief

Grief Out Loud

The is a new online platform designed to help adults with autism navigate and cope with the complexities of grief arising from both death and non-death losses. Alex LaMorie, A.A.S is a member of the project's Advisory Board and brings his lived experience with both autism and grief to this work. , brings years of both professional and personal grief knowledge to his role on the project's Development Team. The Autism & Grief Project is unique - just as grief and autism are unique - and the site provides information not only for adults with autism who are grieving, but also the people who...

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The Intimacy Of Friendship - Lissa Soep & Other People's Words show art The Intimacy Of Friendship - Lissa Soep & Other People's Words

Grief Out Loud

Have you ever heard someone’s voice in your head and suddenly you're transported to a time and place when you were with them? This phenomenon is what explores in , her book about the intimacy of friendship and how words and language keep people with us, even after they die. After the deaths of her friends, Jonnie and Christine, Lissa found comfort in this idea of them living on through their words.  We discuss: Lissa's friendships with Jonnie & Christine Grieving a sudden death vs one from a long-term illness The unique nature of friendships formed in our 20's How Jonnie &...

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Changing The Landscape Of Grief Support For Latino Families show art Changing The Landscape Of Grief Support For Latino Families

Grief Out Loud

, LCSW, Dougy Center's Director of Equity & Community Outreach and MSW, CEO of  , are committed to changing the landscape of grief support for Latino families. They bring personal and professional grief experiences to the work of ensuring that every Latino family has access to dual language grief support that honors their cultural values.   We discuss: Cristina & Melinda's personal connection to this work Why it's important now, in 2024, to have this conversation What is unique about grief & grief support in the Latino community The concept of family in the Latino...

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A Living Remedy - Nicole Chung show art A Living Remedy - Nicole Chung

Grief Out Loud

We cannot separate grief from the context in which it occurs. This is true for whose adopted parents died just two years apart in 2018 and 2020. The world of 2018 was very different than that of 2020. In 2018, Nicole and her mother could grieve for her father, together and in person. In 2020, Nicole was on the other side of the country, grieving for her mother in isolation during the early days of the pandemic. The other context that played a role in her parents' lives and their deaths is the structural inequality that exists in the U.S. economy and end of life care. Nicole chronicles all of...

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Conscious Grieving - Claire Bidwell Smith, LCPC show art Conscious Grieving - Claire Bidwell Smith, LCPC

Grief Out Loud

Maybe you're familiar with the phrase, "You can't go around grief, you have to go through it." Or, "You have to feel your feelings." If you're like a lot of people, you might cringe and also wonder, "What does that actually mean?" Grief isn't linear, and it's not something to get through - and yet, a lot of people appreciate having some sense of what to expect and what to do with it all. That's where  new book, Conscious Grieving, comes in. Offered as a framework, not a formula, Claire suggests four ways to orient towards grief: entering, engaging, surrendering, and transforming. Claire...

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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]