By RENÉ A. GUZMAN
Andrea Aycock can only sometimes look at the photos of her hands clasped with her mother’s just before she died in May. But she’ll always cherish the helping hand she got from Anna Adams, an end-of-life doula in San Antonio who preserved that personal moment and so many more for Aycock in her mother’s dying days.
“Anna came and took care of her,” said Aycock, a call center operator in San Antonio. “(She) just mainly comforted me.”
Just as birth doulas help expectant parents bring new life into the world, end-of-life doulas help the dying cope with their next journey. They help the dying and their survivors face death with empowerment and affirmation instead of fear and anxiety.
Also known as death doulas, these trained professionals provide the terminally ill and their families physical and emotional support before, during and after death, the San Antonio Express-News reported. These are nonmedical services that often include relaxation exercises, funeral planning, educating the family on their loved one’s condition and just simple companionship.
Adams sees death awareness becoming more commonplace in the United States in the way that Día de los Muertos (Day of the Dead) celebrations have grown more mainstream and that there are more calls for services of end-of-life doulas.
“Cultures like the Mexican culture that have these beautiful traditions of staying in connection with that (dying) process are so admirable and so beautiful. Doulas want to make sure that is available to all people,” said Shelby Kirillin, an end-of-life doula in Richmond, Va., and program development manager for the International End of Life Doula Association (INELDA) in Jersey City, N.J.
Kirillin sees the rising awareness of death doulas as part of what she calls a “death positive movement,” where more people are getting back to supporting their dying loved ones at home and engaging with their death more up close and personal, much as their ancestors did.
“In the last 100-plus years in our Western culture, that has been taken away from us,” Kirillin said. “How to be with someone who was dying, how to touch them. That was something that we knew how to do.”
INELDA is one of just a handful of death doula organizations in the nation and was launched just five years ago. Co-founder Henry Fersko-Weiss created the first end-of-life doula program in the United States at a New York City hospice in 2003.
Kirillin estimates INELDA has around 40 certified death doulas across the country, yet has trained around 3,000 individuals in death doula care. Many just sign up to learn more about facing death and don’t pursue death doula work, she said, while others branch off to do their own training.
Most death doula services come in three phases.
The first is planning and preparation, which involves getting a terminal patient’s affairs in order and asking some tough questions that call for honest answers. Where does that person want to die? Who do they want present for those final moments? What so they absolutely need to say or do before they’re gone?
Kirillin said that first phase often addresses the dying individual’s regrets and unfinished business, as well as any advance directives, wills, etc. Often referred to as “legacy work,” such planning makes it easier for family to understand and respect the dying person’s wishes.
Fran Morgan is in that early stage with her dying mother Rosalee, who receives hospice care at the private residence of a family friend.
“With Anna in the picture, she will be advocating for all of the things that need to happen,” said Morgan, a retired telecommunications company manager in San Antonio. “It will release me from those responsibilities, and I can just be with my mom and cherish those final moments.”
That second phase is called the vigil, usually the last four or five days of the dying person’s life where end-of-life doulas and family members spend more time at their bedside.
“I call them my angel vigils,” Adams said.
During her doula vigils, Adams, 38, often creates a soothing space for the dying with soft music and dim lighting. Sometimes she’ll add a favorite scent with aromatherapy. Most times, she just gently massages her client’s arms and holds their hands.
And in those final moments as they take their last breaths, Adams comforts them with what they most want to hear, be it Bible verses, soothing music or just someone to say it’s going to be OK.
The final phase of a death doula’s work addresses survivors’ grief. Kirillin said that involves circling back with the family a few weeks after their loved one’s death to check on their emotional well-being.
Kirillin stressed that end-of-life doulas do console families, but are not licensed grief counselors and will refer families to such resources if necessary.
When it came to caring for Aycock’s mother, Adams mostly helped with her bedside care and keeping her visiting nurses on task. Adams also explained to Aycock any of her mother’s diagnoses she didn’t understand.
Then there was that time Adams took those hand photos of Aycock and her mother. Difficult as it is for Aycock to look at those photos, much less share them, she still holds them close.
She holds Adams’s work even closer.
“It is the best help that you can get,” Aycock said. “They provide comfort not only for your loved one that is going through the transition, but for you.”
Morgan expects to experience more of that care from Adams. “I’m looking forward to the relationship that we’re going to have,” said Morgan, who started working with Adams around three weeks ago. “For now my initial experience (and) impression is she certainly has the heart for what she’s doing.”
Adams’s first experience comforting the dying came when she was 16. Fresh from certification as a nursing aid, Adams tended to a best friend’s cousin for several months at her home with bathing and conversation. That care continued when that cousin transferred to hospice care and well up to her death.
“So we just had a bonding moment. I gave her that sacred zone,” Adams said. “That kind of piqued my interest.”
Adams went on to pursue a career in hospice, then for the last four years worked as an EMS manager and dispatcher for a private company. But something pushed her back into working with the dying.
“I told my family, ‘God wants me to do this. God is keeping me in line with this,’ ” Adams said.
At the start of this year, Adams got her end-of-life doula certification. Then over the summer, she partnered with fellow certified doula Sonja Koenig to launch TX Doula Movement, an online training and certification course for death doulas, senior care doulas and doula consultants.
Adams knows of just a handful of death doulas in San Antonio right now, but she expects that number to double later this year when around five of her TX Doula Movement students complete their certification. Adams plans to launch her own doula training service next year.
Adams said the coronavirus has not deterred her from her work, save for having to incorporate more video consultations with families and masks and frequent hand-washings during visits. She has yet to provide end-of-life doula services to someone with COVID-19, but one of the hospice companies she works with takes in COVID-19 patients.
“I don’t have a problem working with COVID patients,” Adams said.
Adams said most hospitals still don’t work with death doulas, but hospice services are slowly warming up to them as adjuncts to their own care.
“It is relatively new, but we’re seeing it more,” said Rachel Hammon, executive director of the Texas Association for Home Care & Hospice in Austin.
Holistic Hospice Care is one of two hospice centers in San Antonio that works with Adams. Administrator Erica Sandoval said Adams has been a welcome bridge between families and clinical teams.
“She can get on (everyone’s) level,” Sandoval said. “And she’s very calm and very patient. And she just wins their trust and they feel very comfortable with her.”
Like Adams, Sandoval, too, sees parallels between death doulas and Día de los Muertos, such as the memory books the doulas make for their clients and the Day of the Dead tribute altars families make for their lost loved ones.
“I definitely think that there’s a good association to that because they are (both about) wanting you to cherish their memories and enjoy the last moments and everything that you can remember of the individual,” Sandoval said.
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