She was shrinking. And becoming more frail. So frail. When you hugged her you felt her bones and imagined them crunching if you weren’t careful.
Once a brisk walker who prided herself on good posture, she now carefully shuffle-walked with one hand always shakily in contact with her new friend, the wall. Back hunched over and eyes trained on the treacherous floor.
Alzheimer’s disease was slowly destroying the centers of her brain that told her body how to walk and talk. Eventually, it would even creep into the deep recesses of her brain that told her mouth to swallow and her heart to beat.
Not to say there weren’t good moments. When her son came to visit at the facility, as he often did, her face lit up towards him in pleased but puzzled recognition. He was someone nice…vaguely familiar, someone she cared about…but…who, exactly…? Her late husband?
No…wait…brow furrowed…maybe her deceased brother…Johnny?
If he left during the visit to go the bathroom, she would greet him anew, forgetting he had just been there. And just who he was, precisely.
Her glasses sat slightly askew and perched a touch too far down on her nose. Taped where one arm had broken off, and with the lenses smudged. But looking in her eyes, you got the sense it didn’t really matter. Her sparse, yellowing-gray hair was pulled back so tightly in a rubber band that it pulled her forehead skin smooth.
High-water blue flannel pajama bottoms with little snowflakes, industrial (janitorial) black shoes, and an overly large faded yellow sweatshirt completed her look.
All her assorted jewelery, gifted over a lifetime by her devoted husband, gold and diamonds, pearls and rubies, packed away. Rings, necklaces, earrings. No longer worn.
She never would have allowed herself such an appearance. Proud and a bit vain, she kept herself trim, wore contact lenses to show off her blue eyes, and dyed her hair red well into her 80’s. She flirted with men half her age who flirted back, and loved being the gregarious center of attention.
Once chatty and independent, she now struggled with words and couldn’t change her own diaper.
Alzheimer’s may have destroyed her memory and stolen her dignity, but her carefully communicated end of life choices would give her back control when her time came. After all, documents had been signed, notarized, witnessed. Pricey lawyers had been consulted.
Her last moments on earth would go the way she chose.
Or would they?
It was a sparkly clear Saturday morning. Beautiful for a fall day in Los Angeles. A good day to die after a long life?
Saturday breakfast at the facility was always waffles and strawberries. The golden brown, crispy waffles smelled tantalizingly delicious. Shuffling into the dining area for breakfast, she reached the edge of her chair.
She started to greet another resident when she suddenly collapsed, falling to the dining room floor, pulseless.
Not the worst way to go. No pain. No lingering. It was her time. R.I.P.
[Tweet “Little did she know she would have to die twice”]
Panicked, someone yelled and someone else called 911. Chaos ensued. An employee started chest compressions and continued until paramedics swooped in like storm troopers to resuscitate her aged, lifeless, body.
They expertly and efficiently shocked her, intubated her, scooped her up onto a guerney, and raced her to the nearest hospital.
Her son and daughter arrived at the ED to find her on a Propofol drip, intubated, with scant dark urine output draining to a foley, and an irregular heart beat displaying on the bedside monitor.
The breathing tube was the most shocking. The invasive hard plastic tube jutting out of her mouth and heavily taped in place looked more like a tortuous gag. Her swollen, dry tongue protruded out to one side, her lips already chapped. She had spittle bubbling out the side of her mouth and down her chin.
Embarrassed for her in case she was aware of her appearance, and concerned for her comfort, the daughter asked for a washcloth and some water.
Wrist restraints securely tied to the metal bedframe kept her hands and arms firmly pinned flat on the mattress with no wiggle room. No one had ever looked more uncomfortable and helpless.
A muted, sedated, medical prisoner
The daughter hovered at the bedside, but kept looking over at the ED doc, about only twenty feet away, furtively trying to catch his attention. He was half-stting on the counter at the nurses station, arms folded, and avoiding her gaze. Clearly he knew what she wanted.
Finally she approached him at the nurses station, hands outstretched with all the official papers “Please extubate her. Here’s her HealthCare Power of Attorney. Here’s her Advance Directive. It’s what the family wants.” Dated, signed, notarized, stamped.
He had been briefed on the situation. Expecting the request, he shook his head and gave first the documents and then the daughter a dismissive look. “She’s going to be transferred to Kaiser. They can take care of it there.”
His arms remained folded, his face an impassable mask. Protesting would do no good.
Right. Why would an ED doc take a critical but stable patient who was about to be transferred, and extubate them, creating an unstable patient situation?
Hours later, she was transferred to Kaiser ICU as promised. Within a short time that night, thankfully, she was extubated. And not too long after that, she passed. Not the way she had decreed, but in the end, having received good care at Kaiser.
I am the daughter. The woman was my mother.
For more of the story, read Thank you, Kaiser West and ICU Nurse Anita for Caring for my Mother at the End
Having all the requisite paperwork does not guarantee end of life wishes will be followed at point of crisis.
I’m not sure where the communication broke down. Did a caregiver panic? Was he/she afraid and unprepared for this situation? Once the resuscitation train is in motion, it is hard to stop.
People act out of a need to help as well as out of fear of liability- doctors, nurses, aides, facilities.
A call out to facilities, please, to educate staff on end of life decisions and care, and identify residents who should not be resuscitated.
A call out for families to understand facility policies around end of life treatment.
note: I regret we did not not have a POLST (CA) It may have been more effective
Until next time,