Death and dying are not synonymous.

We tend to connect the two, but they are not analogues of each other.

My brother was “dying” when he came into my care on December 26, 2019. Diagnosed on January 1, 2020, New Years Day, with Glioblastoma, he was officially “dying.” We had six months, nearly to the day, to LIVE together. Two craniotomies, two inpatient acute rehab stays, and various “scientifically significant volunteer surgical events” notwithstanding, we had a glorious six months together in his “dying” phase.

He “lived” more fully in his last six months than he had for over 40 years of his life.

Then came the final stage of his dying, the last seven days of his life, and it was miserable: In-home hospice care, catheters, morphine, pain, anguish. Then he was gone while the hospice nurse, my partner and I sat at the dining room table drinking coffee in the dark, early hours of June 4th. A profound, pervasive quietness ensued. I washed his body and smoked the chanupa, hoping to carry his soul across in a good way.

The mortuary was notified. The van came and took him away. The DME provider from Medicaid came and took his bed and wheelchair. It was done--my brother’s life, complete before 9 a.m.

My uncle did his death march over three months, with his son creating the blessed gift of support so that he was able to die in his own home, in his own bed, quietly taking his last breath with ease on my mother’s birthday.

That same day, my mother experienced a “CVA” (Cerebral Vascular Incident) and landed in the ICU, after much cajoling for her housekeeper to call 911.

One week later, after a week of home health skilled care, my mother was found unresponsive, sitting in her own excrement. She had been on her kitchen floor for up to four days, as no one had checked on her. She ended up in the ICU again.

This time, she was not coherent. She could not speak, a lifetime skill she had adhered to vehemently--she valued her vocabulary above most things, as well as a quick and able mind--but she could no longer communicate. My mother was completely incontinent on all levels, could not eat or drink, had extensive tissue damage to her buttocks, thighs, and anus from sitting in her own effluent, and at 82 was experiencing the “dying” of her being in real time.

My mother was one of those larger-than-life people. She was the John Wayne of my world. Profoundly creative, she was a real-life boot-strapper who carved a life in this male-dominated world women can only imagine, and books and movies can only scrape the surface of.

She was also the most abusive, manipulative, violent, phobic, fear-filled person I have ever known.

Now, in this immediate moment, she finds herself 100% in my care, purely by design and with purposeful lack of empowerment or information.

I lead you down the journey and navigation of the current medical system for an individual who refused to provide adequate information for their “loved” ones or immediate family about their financial situation, their insurance coverage, or, more importantly, their wishes as they dive into the waters of their own dying.

It is at this juncture, with zero information but full responsibility as the only surviving ‘relative’ that I bring you into this story.

My mother has Medicare with a supplemental policy. I know this because the hospital told me this much.

I don’t know her Medicare number, her SS number, who she banks with, what her assets are, or what her wishes are beyond a DNR (Do Not Resuscitate) and no heroic measures requested.

I don’t know what her wishes were regarding palliative care, nor who she would trust to provide this for her, or the extent that she would want this care continued.

I have become an investigative sleuth, working blind from 1100 miles away, trying to create compassionate environments and caregivers to support her at this time.

For those who don’t understand the medical coverage for the elderly, let me break it down for you.

Medicare is a mostly mandatory government-executed health care coverage plan that we all pay into from our FICA taxes from our employment and capital gains income. It kicks in at around 70 years of age depending on personal retirement choice.

Medicare recipients can add a ‘supplemental’ insurance policy, at personal cost, to cover things like copays and pharmaceutical costs.

If a Medicare recipient, or more accurately ‘beneficiary’ (a great misnomer) is poor enough, they also qualify for Medicaid, a state-run medical policy.

In most cases if someone qualifies for Medicare AND Medicaid, they have the insurance medical health coverage golden ticket.

If, however, someone who is elderly has created enough wealth that they don’t qualify for Medicaid on top of Medicare, they are effectively screwed in the medical system.

Case in point, my brother. Thankfully, he was 63 and impoverished when he was diagnosed with glioblastoma. He qualified for state Medicaid and was fully covered for two craniotomies, two inpatient acute rehab hospital stays, home health, and then hospice.

For my mother, this is not the case. She has more assets than would qualify her for Medicaid, so she only has Medicare – which, I reiterate, she has paid into for decades from her employment and self-employment – and therefore only qualifies for a limited amount of health benefits.

Fast forward to these past two hospital stays and her current diagnosis of a CVA/Stroke with a DNR in place.

Her current hospital stay, which began with an ER assessment and admittance to ICU and Trauma care, rapidly evolved to a physician wanting to do a craniotomy (cut out a piece of cranial bone, drill a hole into the brain, and relieve the accumulating brain hematoma, then replace the cranial bone and staple approximately 30 staples into the head) on an 82-year-old woman in failing condition because Medicare would cover the procedure. The situation declined with me ultimately intervening on her behalf with her DNR request.

The resulting insurance mandate then translated into her having “nothing to treat, release to Hospice care” diagnosis and prognosis.

What this ultimately meant was that she could be released to home care, with a loved one as a primary care provider providing 24/7 care, and hospice coming to the home for TWO 45 minute service visits per week.

Understand that this woman lives alone and cares for four animals. Her nearest relative is 1100 miles away (me) and that person knows nothing of her life or lifestyle and has her own life happening.

Because my mother is relatively healthy, even though she is obviously dying and doesn’t have anything to actively ‘treat’ beyond what amounts to extreme ‘bed sores,’ she doesn’t qualify for inpatient hospice care based on Medicare guidelines.

Now, as her primary POA by default because I am the only remaining living relative, I must navigate the Medicare system, advocating from 1100 miles away. I need to make sure my mother can qualify for a SNF (Skilled Nursing Facility, aka nursing home) instead of hospice care, so that she can qualify for paid Medicare days in an environment that will adequately care for her instead of being released to her own recognizance in her own home where she cannot function at all but could receive hospice care twice a week. Crazy, right???

The system is so obviously broken.

I am blessed because I am a health care provider, albeit in alternative medicine. At least I understand the system, and I worked in Medicare Part A for several years, so I am more familiar than most with the language and the path to health care coverage.

My heart goes out to those who don’t know how to navigate this system.

It is unconscionable to me that a system would rather put an elder who is obviously on their death journey through a major surgery just to consume Medicare dollars, and to meet a system obligation to create a qualifier for “coverage of care.”

Where does Medicare, or any medical insurance coverage private or otherwise actually meet us when we are actively “dying” and require nothing more than compassionate, caring, skilled palliative care?

Why are we afraid of ‘dying’, but have systems in place for when we are dead that are more meaningful and more relevant?

As of this writing, I have been able to work with a gifted hospital care coordinator to shift my mother’s “hospice” designation to that of qualifying for a skilled nursing home, with hospice care at the ready based on her DNR wishes. To do this, I have had to navigate the hospital enacting her discharge before we even had placement for her by appealing her case to Medicare, which bought us three additional hospital days. This means that she was not discharged to her own home, alone, without care or support. It also means that she is able to stay in the room and the hospital setting surrounded by people who can care for her until we can find her an appropriate SNF/nursing home to transfer to.

Based on my own personal experiences and professional background, I have been able to push the system to help my mother. I doubt many people could have done as much for their loved ones in a similar situation, costing the families thousands of dollars and extreme stress and fear for the safety and care of their family members.

The sad thing about all of this is that my mother never opened up her personal affairs to me so that I could be more proactive about this stage in her life.