I keep circling back to grief and loss because my world has been rocked by my losses. I think of death and loss every day. Not in a morbid way, but these losses have profoundly shaped and changed me. I reflect back on my life in terms of “befores” and “afters.” Before this person died... and after this person died... Because some things will never be the same again.
In one of my favorite books on grief, It’s OK that you’re not OK, Megan Devine writes that “loss and grief change our landscape. The terrain is forever different and there is no normal to return to” (2017, p. 63).
I have been paralyzed by grief quite a few times. Before I turned 30, I lost both of my parents. And a few months ago my little brother died. As is common with grief, this most recent loss also brought up all the heavy sadness of my other losses too... Cumulatively, these losses have been enormous and unimaginable. I feel blessed I have strong coping mechanisms and an amazing support system lifting me up.
To be transparent, it has been challenging to be a counselor in a pandemic, when so many people are grieving and I am too. I have found that it can be challenging to authentically hold space for others when you are in pain yourself.
But I know I am not the only one in this position. I am not the only grieving counselor holding space, hope, and healing in this world for those who are also struggling. Everyone will encounter loss at some point in their lives – for me it just seemed like a lot of it happened at a disproportionally young age. But in the words of Megan Devine, “if we commit to loving, we will inevitably know loss and grief. If we try to avoid loss and grief, we will never truly love” (p. 63). And I have loved deeply, and so I grieve deeply too.
Many of the losses I have gone through seemed to come on pretty unexpectedly and out of nowhere, without much time to prepare. So, I don’t have much personal experience with anticipatory grief. Today I am pleased to share a guest post by Tara Ferriola, Psy.D., author of the book Love Legacy: A Guidebook for Families Anticipating the Death of a Parent. Dr. Ferriola speaks with us about how to prepare for a parent's death when they have a terminal illness, and shares some tips for helping children cope with and understand anticipatory grief.
Tara Ferriola, Psy.D. is a licensed clinical psychologist who provides compassionate therapy to children, adolescents, adults, and families in her Delaware-based practice. Dr. Ferriola incorporates grief concepts into her work with clients as they experience loss, transitions, and death. She has over 15 years experience clinically and through volunteer work with Camp Erin.
Dr. Ferriola dedicated her dissertation work to creating the Love Legacy guidebook. Based deeply in research, the book helps families through a parent's illness and death by providing interactive activities to maintain connections, continue the parent's memories after death, and ease the transitions. This book aims to promote healthy grieving before a parent dies.
Love Legacy is a helpful workbook to use with children who may have a terminally ill parent, this workbook will help them normalize the many feelings and adjust to changes surrounding the impending death of their sick parent. Of course, we want to protect our children from pain and suffering, but we also need to let them know what is going to happen if a family member is terminally ill, so I appreciate the honesty that this book affords the reader.
I also like how this book is structured. There are activities for reminiscence and the prompts are developmentally appropriate, for example: “What is the name of the illness? What part of the body is it? What will treatment look like? What is the time frame for when the death is likely to happen?” These are such helpful questions for kids to focus on! Dr. Ferriola shares some considerations when faced with anticipatory grief work with children, below.
Considerations When Children are Faced with Anticipatory Grief
1. The developmental level of the children
Younger kids have a difficult time understanding the permanency of death. Healthy grieving occurs when accurate and age-appropriate information is provided. Take the time to learn about your child’s developmental level and how they will understand and process grief. Kara Grief provides a great summary.
2. The parent’s illness
Depending on the type of illness, level of progression, and time of diagnosis, the parent’s physical capacity to engage in this work and the time in which to do it may be limited.
3. “Maybe you should...”
There is no normal way to grieve or to engage in grief work. Grief is very individualized. In addition, all types of emotions are normal and may impact the family’s ability to face something so complicated. Some family members may want to jump into the work; others may want to avoid it at all costs. All of this is normal!
4. The family dynamics
Relationships are complicated. If the family relationship is strained, a terminal illness will highlight those dynamics. Therapy may be a good course of action if that’s accessible to the family. There are many feelings that anticipatory grief brings up and by embracing those feelings and working through them, this can help healthier grieving before and after the parent’s death.
5. “Let me know how I can help”
When that question is asked, we often don’t know what help we need. It may be beneficial to ask a network of trusted friends and family outside of the home to help the family with everyday tasks and anticipatory grief work. These adults could be responsible for helping to complete the guidebook, cooking meals, driving the kids to events, homework, grocery shopping, or yard work. This lightens the load on the parents as they manage other important tasks with the household, childcare, and healthcare.
6. Maintain routines
As best as possible, it’s recommended to keep kids in school and engaging in as many activities as before the parent’s diagnosis. This provides a sense of normalcy to the family which has been shown to help kids during this time of so many other changes.
7. After the death
Begin conversations focused on what life will look like after the parent dies. Love Legacy has a section on who will take over household chores and how to celebrate anniversaries. By starting those conversations early, it promotes a sense of safety and continues bonds with the parent.
Tara also shares the inspiration behind Love Legacy, a great workbook for kids who are anticipating the loss of a parent:
My Mom, Janet, was truly one of a kind. She knew people everywhere we went and made friends with those she didn’t know. She had a colorful vocabulary and a personality as big as the room she was in. She never turned down a good sale. My Mom also loved with every ounce of her heart - family, friend, or stranger. She embraced the role of Mom 110% and made sure that I always knew I was loved, got to have every opportunity available, and gave me an amazing life. And while I was the only one fortunate enough to call her “Mom,” she was everyone’s “Aunt Jan.” She was an amazing person - someone we all should strive to be like.
I was lucky to have had 28 years with my Mom. She courageously battled cancer for a year and during that time, we got to have many conversations about what life would look like after she was gone. I had the opportunity to document memories, look through pictures, ask questions about her life, learn how she wanted to celebrate the end of her life (she asked that we throw a big party with everyone she knew so that she could say goodbye to them herself), and identify ways in which she wanted to be remembered after her death. We also talked about how difficult it would be that she would miss a lot of my big life events.
Three years prior to her death, I completed my dissertation for my doctorate degree. I wanted my dissertation to be useful after it was finished. I decided to create a guidebook to help families anticipating the death of a parent. Little did I know that my life would be imitating art a few years later. Love Legacy: A guidebook for families anticipating the death of a parent provided me with the framework to maintain connections to my Mom and plan ways to honor her memory.
Grief is hard to talk about and even harder to feel. We tend to avoid it as it forces us to confront our own mortality. If given the opportunity to begin processing those tough feelings before a parent dies, children will engage in healthy grieving.
Love Legacy is an interactive guidebook for families to complete with the ill parent in order to work through anticipatory grief feelings. Some activities include documenting the parent’s biography and memories, writing letters for the children to have at future life events, gathering pictures, identifying who will complete the parent’s chores, and assigning different belongings for each child to keep. In completing the book, the family has opportunities to engage in hard conversations and talk about big feelings while also spending time together and beginning the transition to a life without the parent.
As I approach the 8 year anniversary of my Mom’s death, I find comfort in the conversations we had during her illness as they helped influence the ways in which I choose to remember or celebrate her. On birthdays or anniversaries, I place small balloons or flowers next to her urn, special ornaments are hung on my tree every Christmas, I wear a bracelet engraved with her signature on it and a ring that I gifted her before her death, and her famous cookie recipe is used whenever I miss her. On my wedding day, I placed a small picture of her on my bouquet so she could walk me down the aisle. These are some of the ways I continue the bond I have with my Mom and thanks to the Love Legacy guidebook, I know these are ways that she personally chose.
I’ll always miss my Mom and I think about her every day. On the day she died, my world was changed forever. I’m grateful to have had the time before her death to not only cherish our final moments together but to also help make my life today, a life without her in it, a little easier.
More Resources on Anticipatory Grief
If you are looking for more resources and interventions for working on issues of grief and loss with kids, be sure to check out these blog posts:
References
Devine, M. (2018). It's ok that you're not ok: meeting grief and loss in a culture that doesn't understand. Sounds True.
Ferriola, T. (2021). Love legacy: a guidebook for families anticipating the death of a parent.