Holding Space for Dying
By Erin Darst Hein
My son has a digestive disorder that makes it more difficult for him to process food. It is not a life-threatening diagnosis but definitely a life-altering one. Some days he cannot eat solid food. When I share this with people (usually at the table at a gathering where he cannot eat and I need to politely explain not to push him) I am floored by the responses. I wish I had $1 for every person who encouraged me to make eating more fun, or more strict, or to talk to him about how important eating is. It doesn't really matter if the person is an acquaintance or a close relative. Everyone has an idea. I even recently had someone say "I wouldn't tolerate not eating if it was my kid. I know he's different. But if it were MY kid, this wouldn't fly." At first, especially before we knew what was wrong, the comments were like blows. What was I doing so wrong that I couldn't feed my own son? It's a devastating position to be in.
Similarly, when my father-in-law was diagnosed with aggressive brain cancer in 2010, I watched him and my mother-in-law get tossed into this over-whelming world of doctors and insurance battles and decisions, SO many decisions. His speech was affected very early on, and once he could no longer participate it was left in the fierce, loving, capable hands of his wife. What a position to be in! More treatment? Less treatment? At home? In a facility? Fight? Rest? I watched her face every fork in the road with research and agony and love. And I watched as friends and family, well-meaning but not in the decision seat, had an idea or opinion about what should or could be done next.
These experiences and my experiences growing up in the funeral industry have taught me something priceless. Everyone lives differently. Everyone grieves differently. And everyone dies differently.
When you are making end of life choices for yourself or a loved one, you surround yourself with a medical and support team you trust, you make the best choice you possibly can every step of the way, you hold space for the grief and the love (and the advice) of all of the other players in the journey as much as you can, and then you bless and release that step and square your shoulders to face the next one. You will likely wonder if you took the wrong fork in the road: wonder whether you should have taken Aunt Sally's advice and gone to the center she read about in the paper. Was this or that decision the right one?
Here's the truth. Every decision you make from a position of honor, love, and respect, is the right decision. Every step you take that celebrates the best of your life with that person, is the right step forward. It's YOUR road. It's the last chapter in your story on Earth, and it's unique and complicated and important and yours.
Be patient with yourself and with all of us who want to help. It's human nature to try and offer problem-solving. Especially when we care about someone. Even when someone complains about a simple problem at the office, we often jump in with an idea, when maybe all that's necessary is a listening ear. It's 1000 times worse when we are faced with someone dying, because we aren't a society that really looks at or thinks about the dying process until we have to. We stumble over our words and our emotions, or we just pour words into the empty space but its all because we care.
When we offer an unsolicited solution or suggestion, it can sound to someone who is pouring their soul into decision-making like we are questioning them. So it's OK to ask them if they want help problem-solving or researching, or even if they simply want to talk through what they’ve already learned. We can take a dinner. We can reach out with a card or a call, without expecting a response. We can offer caregivers a few hours to themselves. We can applaud their efforts. We can tell stories and share memories with them. We can just provide companionable silence.
Be there for them. Be present. Be a good listener. Walk the journey with them without judgement about the direction or the destination. Hold space for their struggle.
And to everyone walking this path for yourself or as a caretaker: we see you. You’re doing a good job. You are braver and stronger than you know.
Darst Funeral Home is always available in your time of need. You can reach us at 281-312-5656.
Erin Darst Hein is the daughter of John Darst, owner of Darst Funeral Home. She lives in Kingwood with her husband Evan and kids Jack(6), Caroline(4) and Ian(2). She is also the owner of Blackberry Lane Photography.
You can Read More here:
Part 1: Earliest Memories
Part 2: Holidays on a cemetery
Part 3: This Little Light of Mine
Part 4: Genealogy
Part 5: The Man Behind The Magic
Part 6: No Cancer But a Dose of Perpective
Part 7: A Year Full of Yes
Part 8: Last Moments and First Steps
Part 9: Facing Fathers Day Without Your Father
Part 10: When Children Grieve
Part 11: From Velvet to Violets: Shedding New Light on Saying Goodbye
Part 12: If it Won't Open, It's Not Your Door
Part 13: Love, After All
Part 14: New Beginnings
Part 15: Not Goodbye, Just Goodnight
Part 16: Holding Space for Dying