Ways to help someone who is terminal–the most powerful moments of loving.
We are going to dive into a topic that at first, you might turn away from. We get it — this subject isn’t an easy one. From experience, and to soften the blow a bit, we want you to remember that at its core, we are writing about ways to LOVE. And we are suggesting that one way to face the hardest moment that you’ll have to with a friend or family member is to keep the idea of “resilient love” in front of the pain of an “impossible to bear” diagnosis. We think that February is a nice month to talk about this topic — we hope that you read to the end.
While there are many breast-cancer-focused non-profit organizations that support funding research or detection, Runway has always been singularly focused on the experience of breast cancer for families. Since a large part of our work centers around working with families who have lost a parent, and those who are still undergoing treatment, we deal with terminal diagnoses regularly, and often get questions from friends and family members asking us how they can help someone who is dying.
There’s no singular answer to this question, but we can share some helpful approaches and resources that might make supporters of terminal people feel more empowered, prepared, or comforted along the way.
1. Acknowledging death as just one part of someone’s life.
When someone is dying, it can be hard not to focus solely on their current condition — maybe its the amount of time they have left or their current comfort level or the many logistical needs that accompany death. However, many palliative care experts who have done research on patients in hospice or other end-of-life scenarios encourage us to help terminal people by trying to understanding the meaning they’ve drawn from the circumstances they are facing. Any type of ending is hard, and we very rarely practice endings, yet in the face of death, many patients worry that their passing will cause a finality to their story; that they will be forgotten. Your words to your friend can therefore focus on the fact that they will not be forgotten and then can move into talking about the other parts of their life that meant the most to them.
2. Let them tell their story and be genuinely interested in listening.
Atul Gawande, a physician who has devoted his life’s work to changing the way we think about mortality, says: “In the end, people don’t view their life as merely the average of all its moments—which, after all, is mostly nothing much plus some sleep. For human beings, life is meaningful because it is a story. A story has a sense of a whole, and its arc is determined by the significant moments, the ones where something happens. Measurements of people’s minute-by-minute levels of pleasure and pain miss this fundamental aspect of human existence. A seemingly happy life maybe empty. A seemingly difficult life may be devoted to a great cause. We have purposes larger than ourselves.”
For one terminal member of the Runway family, it was incredibly important to leave some tangible messages for her child, so we helped her capture her thoughts in a video that served as a way for her family to continue to see and hear her after her death. Whether you’re helping a friend capture their thoughts, or simply listening to some of the most meaningful experiences they’ve had, your interest about their life can help honor their contributions and legacy. And as you listen, allow the silence to fill the space and rest comfortably there. People at the end need a person to listen and also someone who can stay and acknowledge the silence. Prepare yourself to do that and know that those moments of silence are incredibly comforting to experience with someone else close by.
For more, check out Atul Gawande’s book, Being Mortal: Medicine and What Matters in the End
The most common things that we’ve heard while helping moms make their Legacy Videos’ for their children are the most simple and beautiful things to listen to someone say:
I want them to know that I love them.
I hope that they will never forget that I am their mother.
I want others to help them remember me, tell them stories, and give them hugs on the days that I cannot.
3. Say what you need to say.
For all sorts of reasons, in our everyday lives, we keep emotions and truths close to our chests, and often beat around the bush of what we actually mean. Dr. Ira Byock, another palliative care specialist, identifies four phrases — “Please forgive me,” “I forgive you,” “Thank you,” and “I love you” — as those that are the most important, but often the hardest to say. Whether or not you feel time is “running out” – take the time to say all the things you would like to say to a loved one. You are not likely to regret letting someone know how much they mean to you or how you feel, no matter what the future holds.
For more: https://www.amazon.com/Four-Things-That-Matter-Most/dp/1476748535
And in this realm, people often ask, “when do I go and visit someone” as a diagnosis can indicate weeks, months, or days. Always go then, when you feel like you most need to give the person a hug — don’t push off a visit because you think there will be more time; make it a priority to show-up the moment that you are able to. It will allow you to start to carve out the time for yourself to recognize and begin your own grief process, and people who wait often miss the chance to really spend valuable time with someone.
If you’ve made it this far, it is very clear you are well intentioned and want to help, which is an important first step. If you know someone who might benefit from our monthly Runway blog, please pass it along. And please be in touch if you think that a Legacy Video would help a friend who is living with a terminal diagnosis.