The day my mother was packed off from hospital to care center found me repeating The Story again and again. This had come to be the drill, whenever new health care providers or social workers appeared in the picture.

My mother’s health care history was not only a groaning database of doctor consults and hospitalizations, lung function tests and labwork, EKGs and CT scans, dexas and mini-mentals, pulmonary therapies tried and medications taking up two square feet on a countertop. It was also a train wreck, an obstacle course, a Rubik’s cube. It was a ruinous game of chutes and ladders tied to deep furrows of personality and habit and most of all to the tangled skein of her marriage. It was no exaggeration to say that her well-being had become hostage to her husband’s ineptitude, selfishness, and slipping mental gears–and his fury at both his burdensome wife and her meddlesome daughter.

Over and over, I tried to make sure people entrusted with any part of my mother’s care grasped the intricate and messy complexities of her life: her limitations, his hinderings; her profound vulnerability, his minefields and roadblocks. It exhausted me to keep doing it. But without either a power of attorney or guardianship for my mother, I was consistently at a disadvantage. My attempts to intervene on my mother’s behalf often came a cropper because I couldn’t whip out a duly executed power of attorney document. The ace in the hole I did have–my mother’s health care directive, naming me and my sister as prevailing decision makers in the event of my mother’s impairment–seemed to be given short shrift.

That my mother’s memory and judgment were impaired there was little doubt; every doctor who had met my mother said they would testify to that effect if I went for guardianship. Yet my mother, unaware of her misfiring synapses, continued to be treated as though she was capable of making her own decisions, with my impaired father—who worked hard, and often successfully, to fool people into seeing him as wholly functional—riding shotgun.

I wanted–needed–the doctors to get it; if I was to gain any traction in my efforts to ensure my mother’s well-being, it meant bucking not only my mother’s confusion but my father’s overt resistance. And so I kept telling The Story, the action-packed tale I referred to privately as Big Mess With Mom (the title I’d scrawled on a file cabinet bulging with mom-related folders). The Story: Of her losing battle with emphysema (with a dementia subplot) and my flailing (and often failing) attempts to slay all the dragons of hardship and misery (mostly my father’s doing) that were in the path of this increasingly frail and vulnerable woman.

With the hospital social workers, I took a deep breath. Here goes, I thought. Another attempt to shorten into a pithy and useful tale the excruciatingly steep and rocky journey of the past three years.

The Cliff Notes version would look something like this:

My father’s bad behavior, my mother’s dodgy mind, pointless pulmonary rehab, the downward spiral through missed medications and rotted food and stairway falls, the pitched battles with my father over the air conditioning he wouldn’t turn on and the accessible shower gizmo he kept taking off.

 

The Husband Run Amok: The Leaving His Wife in a Hot Car debacles, the Mismanaging The Oxygen catastrophes, the Harassing of the Home Health Aides saga, the Trying to Keep the Daughters Away chapters, the Writing Bizarre Notes to the Daughter kerfuffles, the Cancelling His Wife’s Doctor’s Appointment episodes.

 
The doctors who didn’t get it or didn’t want to get involved, the lawyers who pressed us to get guardianship but warned of balky judges, the county social workers that needed things to get worse, the urine-soaked clothing, the eventual horrifying crisis, finally the intervention from the county, the transition into rehab, the triumph of getting my mother into assisted living … and the despair that my father went with her there.

 
And up to the present: Her decline, his hostility, her cheerful quasi-lucidity, his brooding mental tangles, the reality that health care decisions would now have to happen without them, the good news that mom has a living will … and that I am prepared to do everything I possibly can to help my mother in this hardest hour of her life.

That day, circumstances required me to tell The Story (or chunks of it) to a social worker, chaplain, and hospice planning team at the hospital; and to an admissions director, social worker, nurse manager, and night nurse at the care center. My parents’ impairments had become more profound, and more obvious; still, many of those on the scene in the last few months of my mother’s life continued to put them in the driver’s seat. As evidence, I need only note that when my critically ill mother was first admitted to the hospital on the day after Christmas, the staff had initially heeded my father’s instructions that I not be notified at all.