My First Year as an End of Life Doula – by Agnieszka Marek
I’m Agnieszka Marek an end of life doula who, over the last twelve months, has juggled six NHS-referred clients and a handful of private families (all names and identifying details have been changed).
The letters “N-H-S” can trigger a full-body eyeroll in some circles, but my experience has been decidedly positive. Yes, paperwork breeds faster than rabbits, referrals land when you least expect them, and the budget is tighter than last year’s jeans – but the work is still worth doing.
So, with equal parts gratitude and a daily prescription of singing-bowl sound baths and rooibos tea, let me share three stories that shaped my year. If I do this right, you’ll finish reading with a smile, a strategy, and maybe a fresh respect for the quiet power of simply showing up.
John — Advanced Dementia with a Side of Comic Relief
If you’ve never been proposed to twice before morning coffee-time, you haven’t met John. John lives in a care home with advanced dementia; for the past year I’ve been his doula, occasional stand-up partner, and unintentional fiancée.
Presence over procedure
Most visits start quietly: I sit, breathe, coach him to breathe when he’s agitated, and let him sense I’m there. On bright days he shares detailed plans for a future sailing holiday; on tougher ones I rescue his teacup hitting the floor. He can’t track the clock, but he tracks tone – soft voice, soft room, gentle playlist, open heart.
Humour as a clinical tool
John’s thoughts can loop like an old vinyl stuck on one groove. When he launches a 17-step plan to buy a cheese-powered motorbike – then suddenly remembers he’s in a care home – I grin and ask, “And so what?” He pauses, chuckles, slaps his knee: “Yeah… who cares!” Laughter cuts the frustration and plants us back in the present.
Favourite moment
John: “Can you call Julie?”
Me: “Lovely! Who’s Julie?”
John (long blink): “Oh… my ex-girlfriend—from 1962.” (sheepish grin)
Me: “She might be amused to hear from you!”
We collapse in laughter while a passing nurse wonders which of us needs the DNR paperwork first.
Serious take-aways
- Emotional memory outlives factual memory—he forgets my name but remembers feeling safe.
- Humour de-escalates agitation faster than lorazepam—and the only side-effect is laugh-lines.
- Family inclusion matters: when his wife heard the “wedding” story, worry melted into warmth. Shared jokes = shared resilience.
Paul & Ruby — Stoicism Meets Burnout
Step into Paul’s lounge and you see an 85-year-old with liver cancer insisting he’s “fine.” Step out, and he whispers, “I’m scared, what’s coming?” Bridging that gap became my real work.
Paul’s veneer
He cracks jokes for district nurses, stands taller than the IV pole, and files “pain” under “PR problem.” Our visits became islands where terror could surface without costing him pride. Permission – not pills – was his missing medicine.
Ruby’s volcano
Former partner, sole carer, three years beyond capacity. One minute she fluffs pillows; the next she threatens to sell the house if he won’t sign the Power of Attorney. Beneath the roar: exhaustion and anticipatory grief wearing a trench-coat labelled “hostility.”
My balancing act
- For Paul: Guide Advanced Care Planning, sanity-check late-night Google dives, and reassure him that quiet bravery still counts as courage.
- For Ruby: “I’m your emotional scaffolding, not the social-services hotline.” Saying it kindly turned heat into light.
- For both: Neutral, factual notes to the hospice made a safety net without alienating Ruby.
Lessons worth borrowing
- The brave face fools professionals too; a doula’s continuity peels back the curtain.
- Carer burnout often looks like aggression; naming the fatigue deflates the spikes.
- Documentation is diplomacy in pyjamas: clear notes stop arguments before they start.
Kingston Hospital Night Shift — When the Energy Isn’t Yours
Two overnight vigils at Kingston Hospital taught me more than a 200-hour meditation retreat.
On my first shift I sat with a man whose family couldn’t stay. He struggled; it was painful to witness. He died two hours after I left. The next morning his son rang reception, voice sharp: “Why didn’t you answer when I called?” Guilt drenched me. A colleague reframed it: the son’s blame might be grief – and his own guilt – wearing a louder jacket. That night’s weight followed me for weeks.
Months later an osteopath-craniosacral therapist asked, “Whose energy are you carrying?” The question rewired my self-care. Now energetic hygiene – breathwork, closing rituals, smudging, salt baths – sits beside handwashing as essential PPE.
What it taught me
- Burnout sneaks in wearing the badge “just tired.”
- A good debrief between clients empties the emotional cup before the next pour.
- Sometimes our service is absorbing mis-directed anger without flinching, so the family can keep moving.
The Backup Crew
Emma – ever-vigilant, with reflexes to WhatsApp and email alerts that could put an A&E pager to shame – keeps my sanity intact even on her days off. The End of Life Doula UK WhatsApp group is a 2 a.m. lifeline packed with kindness, clever tips, and a steady flow of compassionate encouragement. And to my mentors, who reply to my “quick question” texts with textbook-level wisdom – thank you for being the lintel above every door I walk through.
To Take Away
Across six NHS referrals and a string of private clients, one truth keeps resurfacing: End-of-life work isn’t about ushering death; it’s about amplifying life’s last whispers – sometimes with spreadsheets, sometimes with sarcasm, always with presence.
Thank you for reading. May your next difficult conversation be softened by a well-timed joke, a clear boundary, and the comforting knowledge that, even at the end, laughter still fits in the care plan.
