Embracing Life’s Lessons: From Caregiver to Patient

If life is all about learning, I’ve just earned my post-doctoral degree following hospitalization. Ouch. I know. Self-serving puns aside, it was a novel experience to be IN bed instead of bed-SIDE.

For the past three decades I’ve been doing preparatory studies by caring for loved ones during their final passage of life. Among them were my husband, mother-in-law, mother, and sisters of my heart. I’ve witnessed the grim effects of stroke, cancer, heart disease, ALS, and simple, intractable aging.

With each passing I came to the same conclusion: I’m not particularly afraid of death, but I’m terrified of the health care industry. It is to be avoided at all costs.

When I made a full frontal landing on a concrete sidewalk nearly three weeks ago, my first thought was a prayer: please, no injuries requiring medical attention. 

“Nothing broken,” I announced cheerfully to the strangers who helped me up. What did I know?! I painfully crawled into an Uber for the short ride to my apartment complex, where a nurse checked my vital signs. I was alive.

“Ambulance,” he suggested.

“Nope,” I countered. “I’ll just ice my (screaming) knee and elbow. I’ll be fine.” An hour later I was on the phone saying, “ambulance.”

Once again I assumed the role of bedside observer, but this time observing myself as patient. I consciously sought a sense of detachment, witnessing my own experience as if I were someone else, watching, not judging.

I was not at all approaching death’s door, yet right there at my side were the beloved ones with whom I’d journeyed in years past. While I thought I was caring for them, they’d actually been teaching me: how to let go, how to accept, how and where to set boundaries, when to laugh, when to cry and grieve, how to bless and move on.

My husband, who died in 2007, has been especially present. A brainstem stroke left him with the unthinkable diagnosis of Locked-In Syndrome: a fully functioning mind “locked” inside a totally paralyzed body, unable to speak or eat. Yet he lived a meaningful life for another fourteen years. His presence is palpable, reminding me how he faced adversity with courage, determination and, most important, patience.

My mother sternly warns, “DON’T!” as I start to pick up a sock that fell on the floor. Mother broke her neck by falling when she stooped to pluck an errant thread from the carpet. She survived, but it was a long, arduous recovery. She ultimately died with cancer.

“Thanks, Mom,” I respond when I hear her voice. “You paid a heavy price to teach me this lesson.” I take the time to retrieve a mechanical grabber and safely pick up the sock.

When my dear friend Sharlene was diagnosed with ALS (Lou Gehrig’s Disease), her wry and playful humor rose to the top. Told the disease is incredibly rare, she declared, “I’m one of the CHOSEN.” She taught me that we are a mixed bag of emotions, all valid. She howled volubly with grief and rage every time the advancing disease robbed her of yet another function: walking, eating, talking.

When she could no longer speak, she typed jokes into her talking laptop and played them for strangers as we rode elevators at the medical center. One delighted passenger suggested she be hired permanently. She rather liked the idea.

With death approaching Sharlene spelled out her final request to me by painstakingly moving her one functional finger across the sheet on her bed: “Mary, write my obit.” I did, but I wish I’d done it better, made it more fun, like her.

I sat for hours with my soul sister, Mary Lou, who in her final weeks often resisted pain-killing but sleep-inducing medication. “I don’t have much life left,” she protested. “I don’t want to sleep through it.” 

Walking the route to humility

Our friendship had begun decades earlier when, as office colleagues, we discovered we both played piano. We began meeting weekly to play duets. Mary Lou insisted on playing “secondo” while I played “primo.” As in dancing, someone has to lead.

Thousands of miles and a multitude of shared adventures later, as Mary Lou lay dying she asked what of her possessions I wanted to inherit. I didn’t have to think about it.

“Your humility,” I quickly answered, humility not being one of my stronger suits. She had it in abundance, along with joy, grace, and a delicious sense of irony. Mary Lou shows up all the time now, her musical chuckle echoing in my ear at every pride-punching, ego-deflating event in my life.

“This is what you asked for,” she reminds me.

Appropriately humbled, I’m returning home today after two weeks in a hospital and four days of rehab. Therapy will continue at home. I’ll be aided by a walker, a leg brace, and many well-wishers from whom a river of prayer has flowed.

Healing is not a solo venture. If we think it is, we deceive ourselves. If it were up to just me, I could not, would not fully heal. Lesson learned.

Living In Denial: There’s no ‘sure’ in medical insurance

Here’s how a person without life-threatening injuries (just two fractured bones) gets to lounge in a spacious, expensive, private hospital room for two weeks. To borrow from the “Music Man’s” warning about the game of pool, my saga starts with I and ends with E, spelled I-N-S-U-R-A-N-C-E.

At the start of my recent hospitalization following a bad fall, we called to make sure of my  insurance coverage. We were told convalescent care for therapy following hospitalization and surgery would be “automatically” approved. A few days later, with no explanation, the benefit was denied.

This is a national epidemic. As I spell out my story, I’ll bet you’ll be thinking, “Well, I can top that one.” Any time I tell this tale, the listener (especially people working in health care) inevitably comes up with something even more dramatic. A study by the Kaiser Family Foundation (KFF) determined that, on average, 17 percent of “in-network” insurance claims — some 48.3 million — were denied in 2021. Some companies denied up to half the claims that came their way.

The Washington Post reported one company even has a position with the title “denial nurse.” Some companies use computer algorithms or even AI to “review” and deny benefits without having to look at a patient’s medical chart.

“[M]edicine has become big business. Now health insurance is, too,” editorialized the podcast, The People’s Pharmacy. “These two mighty industries are battling over who can make more money from our illnesses.”

Well, okay. Isn’t that the capitalistic American way? 

But wait a minute. Aren’t we good capitalists taught not to throw money away? To get the most bang for our buck?

After the order for my rehab was denied, we immediately appealed. I’ll spare you the excruciating details of the process other than to make two observations: communicating with an insurance company is as frustrating as trying to reason with a vending machine that’s taken your money and withholds your candy bar. Second, my doctor wasted valuable time on an alleged “peer-to-peer” (doctor-to-doctor) phone call. It turned out he was talking to a mere note-taker who asked a list of generic questions.

I consider myself fortunate. The hospital wasn’t about to discharge me — still too large a fall risk. There I sat, achieving little toward my goal of full recovery that I knew would come with intense therapy. The insurance company ultimately acquiesced. After a week’s delay, I finally made it to the rehab facility. It costs $604 per night. I haven’t seen the hospital bills yet, but on average, KFF says hospital stays in Washington state cost $3,843 daily. Let’s not do the math. It’s too painful.

“The system is broken,” said my doctor, shaking his head. Yet he shows up to work every day. He and more than 20 million other health care workers show up for stress-filled jobs. They tend to patients and side-step obstacles in a system that everyone knows is broken. From CNAs to surgeons, these are the folks who matter. And the bean counters?

They’re out to lunch.