The Death Doula Diaries: Part One

My mom’s been living with early-onset Alzheimer’s since she was about 58 but wasn’t diagnosed until age 61.

Since then, we’ve gone through all the stages and progressions and plateaus, the aggressions, mood changes and sundowning. We’ve experienced all the ways the health care industrial complex cheats, abandons and ignores.

We’ve navigated Medicare, Medicaid, Social Security Disability Insurance, Social Security, hospices, and more social workers and health care providers than I can count, and suddenly (and since forever), I’m here helping Mom in her late-stage disease progression.

We’ve bent many walls to get to the other side, most of the time depending on social programs to support the estimated $7,000-$10,000 a month it costs to provide basic care for someone in late-stage dementia.

But when my mother was live discharged from hospice care, it felt like the wall in front of me grew a little taller, a little extra insurmountable. Completely unbendable.

Because most hospices rely on Medicare payouts to operate, they must conform with strict and antiquated rulings that can sometimes mean kicking patients off the care they need simply because they haven’t deteriorated fast enough.

In my mom’s case, Medicare and hospice determined her no longer terminally ill because she hadn’t progressed in three months.

Who qualifies for hospice care has more to do with dollar signs than signs of dying

A 2017 NPR Morning Edition segment reported that “hospices with the highest rate of so-called live discharges also have the highest profits,” with about one in five patients being live discharged overall.

It’s not really any one hospice’s fault. It’s the failure of our government health care systems to keep up with the growing need of an aging population.

Medicare pays the bills for most hospice care, “at a cost to the government of at least $15 billion a year,” according to NPR. (Before you let your jaw drop at that number, consider the federal government burns through about $2 billion in discretionary military spending every day.)

About end-of-life doulas

Since Mom was kicked off hospice, I’ve learned in these possibly final months of her life that there are few services we can depend on to help us create a meaningful, comfortable dying experience for someone who’s been sick for more than a decade.

There’s no telling when she’ll qualify once again for hospice — or if she ever will again. Or if she does qualify, whether or not I’ll take them up on their services, because the only thing they can provide at this point is a drug cocktail to be administered during active dying.

Morphine is great, but what about caring for dementia patients right in the moment, rather than anticipating their death? What can we give late-stage dementia patients during that in-between phase, when they still have life and love to give, but they’re so incredibly limited?

The answer for me and my mom is an end-of-life doula. It’s a professional service I’d read about several years ago in a New Yorker magazine. The easiest way to explain what they do is this: think about how a birth doula coaches and cares for families expecting a birth. A death doula does the same, only cares for families expecting a death.

The International End-of-Life Doula Association explains it well: “Dying isn’t a medical event. It is a human one. We have accompanied each other through the bookends of life — birth and death — since the beginning of time.”

It is the exact opposite of a hospice experience, where nurses, social workers, doctors, PAs, and other medically-trained staff poke and prod, and look for signs of dying.

Instead of looking for signs of dying, an end-of-life doula looks for signs of living.

I find that a great comfort; far more comforting than any doctor who’s sent me my mom’s most recent vitals.

Doulas are not medical professionals, and at this point in my mom’s life, I don’t think another medical assessment will benefit anyone. What will benefit her the most is comfort care, companionship, massage, reiki, music, and just listening and being in the world with another, compassionate human who is unafraid of dying and views it as a time of gentle celebration.

It’s been a month since we’ve added the doula to our care team, and here’s what’s changed

My mother’s presence in the room is stronger. Her spirit seems brighter, and she’s even more alert and smiling more often than she was before.

While there’s no chance of Mom’s condition ever improving, I do believe our doula is helping my mom get the most out of the life she has left on Earth. That is not something the medical community understands how to do.

As I bear witness to this change in my mother, I’m more at peace myself with her decade of illness. I’m also slightly less afraid of getting early-onset dementia, which is one of my biggest fears. Now, if it does happen to me, I know there are non-medical professionals who can offer me some of the greatest support, as they are with my mom today.

Hospice is great, but even greater is the power of having someone by your side who replaces uncertainty and fear with an unwavering peace, even a little joy.

PART TWO: Learn about two doulas I interviewed to care for my mother, and how I went about choosing the right one for us.