What Do You Actually Do?
October 23, 2024
When I started training as an End-of-Life Doula, I learned quickly that the role can encompass SO many things. My teacher Deanna Cochran repeatedly advised us to focus on just a few things and not to try to be all the things.
My website says that I focus on three areas:
Advanced planning to help people document their care wishes
Supporting caregivers with resources, listening and practical tasks
Deep support during the active dying phase
And then I started working with clients…
From the start, I learned to listen deeply to what people say they need, and to keep my eyes open for any gaps I could fill. My goal was to always ease the load of the family members and clients who are doing the heavy lifting. Often they simply need a buddy who is calm and present and resourceful.
Two years+ in, I decided to compile a basic list of activities I’ve actually done as a Care Doula** to see how it matched up with what I thought I would. I’m sharing it to help others understand the kind of help that is available from a doula like me.
Advanced Planning
Facilitated discussions with families and individuals to discuss and document their end-of-life care wishes
Notarized legal documents
Helped a client from an estranged family decide on a medical power of attorney
Provided information and listening for a client considering legal MAiD (Medical Assistance in Dying) options
Supporting Caregivers and Clients
Set up and maintained online food and care calendars
Met a bed-bound client’s basic needs by delivering food, preparing meals, and cleaning
Provided canine therapy with my dog Gracie
Searched the house to find a misplaced will and DNR order (and dentures)
Advocated for a client to hospice caregivers, even though I didn’t agree with her wishes
Notarized documents at the hospital for a terminally ill client who wanted to update his will
Helped elderly clients use social media and technology to communicate with family
Took a client to visit his wife’s gravesite
Helped out-of town family members join meetings with the hospice team through Zoom
Gave in-home respite and comfort care so the full time caregiver (spouse) could have a break
Visited a non-verbal client with advanced dementia to play music, make eye contact, and report back to her out-of-town children on the state of her care
Fed and walked the dogs when the owner wasn’t physically able
Accompanied the client to the hospital and took notes for the family during doctor visits
Toured assisted living facilities with a nervous client considering a move
Rehomed an elderly dog after their owner died
Supported a client with dementia as she moved from her long-time home to a memory care facility
Took an elder client on outings to coffee shops, concerts, and parks to break up the monotony of assisted living
Researched home health and hospice services for a client with limited financial means
Recommended podcasts and lent books to clients wanting to better understand end-of-life issues
Assisted a client in setting boundaries with unhelpful family members
Organized and labeled items for a client with memory issues
Provided visits that focused on joy during difficult times - i.e. bringing favorite activities and foods, decorating for the holidays, doing crafts, pampering pets, and playing music
Legacy Projects & Events
Helped a musician/songwriter client rehearse and present a concert, and performed with him
Helped a client write personalized goodbye letters to family members
Provided major event planning and management for a 3-day themed Celebration of Life with over 70 out-of-town guests, with multiple locations, activities, decor and catering needs
Helped a client produce a children’s book of life lessons for her grandkids
Compiled a 20+ years of blogs into bound volumes to distribute at the memorial service
Provided event management at a memorial service, including sneaking whiskey into the church and being a gentle ‘bouncer’ for unwelcome guests :)
Recorded and transcribed 20+ original songs written by a client
Organized a birthday celebration in the midst of hospice care
Wrote an obituary in the client’s own voice
Deep Support at the End
Listened deeply to client and family members’ fears, regrets, and worries
Provided phone support for family members deciding whether to turn off life support
Helped a client transfer her dad’s ashes into containers to send to family members
Stayed overnight with a dying client so family members could sleep
Prepared family members to witness physical changes in their loved one’s dying body
Sat bedside vigil with family members while the client was actively dying
Helped families talk about death in appropriate ways with children and loved ones with dementia
To sum it up, for me being a Care Doula means being willing to pitch in wherever I am needed, within my training and skill set. It requires some flexibility and a ‘yes and’ mindset, which I’ve cultivated through my improv training. It means helping the client do the things that give them purpose and meaning, or that bring them joy during a difficult time. It means finding workarounds to make life easier for caregivers. And I guess I’m suited for it because I’m happy listening to the same family story over and over. I don’t mind when someone vents their resentments about taking care of mom. I get weirdly stubborn about finding the dentures that have gone missing. And I’m deeply honored to be with my people as they say goodbye.
**Since my support and care starts long before the client is actively dying, I’ve changed my language to call myself a Care Doula instead of an End-of-Life Doula.
