Turns out, she's really good company.
Right after Nurse Apple uttered the words "I'm sorry, your mother's not ready for hospice," she tossed a consolation prize onto the table, "but you might consider a death doula."
I replied with my usual scintillating intelligence and wit, "Uh... a what?"
A Death Doula! Can anything be more perfect for a dementia caregiver to poke her nose into at Halloween? We spend every day of the year flailing about underwater in an end-of-life flood, but 'tis the season when the rest of the world joins us in celebrating the macabre. So, equally terrified and fascinated by the visions I spun in my head of an Eyes Wide Shut-like sisterhood of spectral spinsters, I made a dinner date with one of these deathly daughters to find out more.
I was looking forward to the female equivalent of Robert Smith, decked out in ritualistic robes and makeup, scaring the bejeezus out of me and the rest of the dining establishment. But what I got was a compassionate, intelligent, well-dressed and well-spoken woman named Darci sitting across the table, knowledgeably versed in the end-of-life journey. (I know, I was bummed too.)
This is what an expert Death Doula looks like.
Disappointingly normal.
So without further ado, ladies and gentlemen, I give you...
Death Doulas: This is not your father's funeral.
(Or, you know, maybe it is.)
Most of us are familiar with birth doulas who offer emotional, physical, and educational support to a woman and her family during a baby's debut on this planet. A Death Doula (also, known by the way less ghoulish name of End of Life Doula), offers the same planning, support, and comfort to people dealing with end-of-life issues, and the family, friends, and caregivers who are seeing that person through to the final curtain call. They are a heart-centered, non-medical compliment to the work doctors, hospitals, senior-care facilities, and hospice teams provide in the active dying process, while rendering a plethora of other end-of-life services before, during, and after death.
Newly diagnosed dementia folks and fresh to the game or seasoned family caregivers can find a lot to utilize in the Death Doulas wide-range of services.
Education for end-of-life legal and medical documents based on the clients needs; Death Doulas provide planning information and offer referrals to the professionals who can execute legal documents, such as elder care attorneys.
Creating a legacy project; expressing what has been important in the life of the dying - their values, how they wish to be remembered, telling their life story, through writing, video, pictures, or even recipe books and gardens. (This sounds like a very therapeutic opportunity for a dementia family caregiver to immerse themselves in remembering the hopes, fears, and dreams of their pre-dementia loved one as they prepare to say the final goodbye.)
Guidance and support to the dying person and their loved ones through the dying process, also serving as a neutral third party to family and friends as they come to terms with death.
Education about signs and symptoms of the active dying process and imminent death as well as the grieving process, grief support, and offering referrals for additional resources if needed.
Creating a Vigil Plan with the dying person, or in the case of dementia, with family/caregivers. A Vigil Plan determines the look, sound, and feel of the last days to provide comfort to the dying and their visitors, caregivers, and family.
Information regarding green burial, home funerals, and aquamation (a rather gruesome, but environmentally friendly way to be cremated by "water.")
Home preparation of the body after death. (Prolly not something that would rock my world, but after caring for my mother for so long... I dunno, I may want to wash and bathe the body I've loved so long and hard. Gawd knows it will probably be the only non-combative cleansing she'll have had in months.)
This is but a short list of the education, advocacy, and comfort services a Death Doula provides - Darci and I talked long into the night about so much more related to death and Death Doulas. For an industry that I didn't even know existed I was impressed with the scope of services they provide at every age. For instance, some of Darci's clients are new parents with that new parent terror in their gut pushing them to make sure legal documents are in place for the kid. And people facing a serious (but not terminal) illness rely on she and her colleagues to support them through curative care. At any point in a person's life a Death Doula can provide compassionate planning, education and coaching for the end of the journey.
In anticipation of the baby boomers calling it quits by the millions many hospice services have recruited Death Doulas for their teams, recognizing the importance of their added emotional and administrative support. Doctors can write prescriptions for a Death Doula service that can be paid out of a client's medical spending account. Death Doulas are also available for private pay, and are laying the legislative ground work now in hopes of being a covered Medicare service in the future.
To find out more about Death Doulas and how they can positively impact your dementia caregiving journey check out the National End-of-Life Doula Alliance, which includes a doula directory search for the U.S. and international Death Doula providers.
In the Portland/SW Washington area you too can be dazzled by the deathly Darci Shaver and her colleagues when you contact Evening Star End-of-Life Doula Services, LLC.
As I walked away from our date, I felt a weight lifting off my shoulders that I didn't know I was carrying - when the time comes Darci's got our backs in this death business. Now, if only I can convince her to dress a helluva lot scarier...
Now that's more like it!